My Story of Life with Lyme and MS

2011 - another year already...

2011-01-02T11:49:00.000-06:00

Times flies when you are having fun, huh? Or even when you are not I guess....it seems as we get older the time just starts to fly by faster and faster. I sometimes wonder where it all goes....

The last week has been a ton of time spent in the car bouncing from home to home of family and framily (friends that are like family). We drove from Texas to Oklahoma to Texas to Georgia to Texas and around Texas some more.....I feel a bit like a pretzel in a knot. I am not sure if it spasticity and just tired from being in the car but I have been in some strange pain in my lower legs for days and it is not going away.

Once again we start the new year in insurance limbo - but what is new? I hate having to deal with this every time we change insurance or roll to the new year. I do not understand why this cannot be a smoother transition. I am already worried about when my next treatment will be and how long it will be before I get my port flushed again. I will start down that road tomorrow sometime to see what happens this go round.

As for the holidays, we had a good visit with all the family and our framily! Although part was cut short - I love them all! Here's to a Happy New Year to everyone - May God bless you all!

End of the year creeping up......

2010-11-28T19:27:00.002-06:00

and the insurance gets messed up - again. Who goes and makes major changes to your medical insurance plans November 1st? Well, my husband's company chose to this year.....and it does not benefit us - for sure! Just another sign of what is to come with Obamacare in the near distant future. I am blessed to have medical insurance I know, but now my rates are higher, my plan is less coverage, the benefits switch soon causing more out of pocket costs right before the year end, thus causing more costs at the beginning of the new year as well. I just do not understand why things need to be messed with all the time. Fortunately the company did make a change in carriers and I will be back on my old insurance carrier come the first of the year. YEA! It will mean another move for infusions, but I will be back under my old center but in a new office and with my old nurses who are soooooo awesome! I can't wait until it takes effect. Seriously, if members of congress had to live with the choices we do on medical decisions, living with longterm illness, they would rethink the way they vote.

HEEEELLLLLLOOOOOOO

2010-11-06T22:31:00.003-05:00

I have not been in a mood to blog for the longest time - but here I am. I have been feeling pretty good so that has been a blessing. We have been busy, busy, busy, so feeling good is a good thing for sure! I am starting to feel a bit run down and I think it may be tied to my B12 levels. I will know more about that next week when I get my blood work back. I think I will be going back to the B12 shots and taking the supplements by mouth as well.

My MRI shows nothing??

2010-05-28T19:04:00.002-05:00

Well, nothing new on the MS side I guess.....but I now have bulgin discs in the L-2 & L-3 along with the L-4 & L-5 I already had! My back is so shot.....I am sure my back doc would be all for surgery now if I went in to see him. I think I will stay away. ;)

A multitude of doctors and still

2010-05-06T13:57:00.003-05:00

in the same place? I guess that is not a bad thing, but it is also not a cure. :) The new doc I saw about CCSVI said he did not think I had CCSVI. He also said he did not know alot about it but he just did not see enough there to say I had any blockages like he would think they would be looking for.....

I also had my 3 month with the neuro. She is sending me to have a full MRI set done. Things are not as good as they have been in the past and I am not sure if this is from new stuff or possibly from no longer taking Betaseron. She did not want me to start back on the shots yet, and said to wait until we see what the MRI shows. Some days it all feels like we are starting back from day one with this crazy disease. I know I could be so much worse off, and I am blessed that I am not, for sure! Wonder if they will ever find out what it truly is.....speaking of, Ken rode the Bike MS Frisco to Ft. Worth this past weekend and he rode 85 miles. The weather was perfect! We thought it was going to storm but it passed around and turned out to be so nice. He had planned to ride 75 more miles on the next day, but I had to leave town for a funeral and his knees were bothering him as well. All in all the ride was very successful - he made it 30 more miles than last year.

Upcoming appointment...

2010-04-23T19:30:00.003-05:00

Wednesday, with the NEW doctor to see about the CCSVI or possible CCSVI and what he thinks of my MRV. They called me today to set up the appointment and told me they did not think there would need to be any further testing done at this point. I am hoping this is a good thing in the sense that they have all they need and he can see everything clearly. Otherwise, I feel like maybe he is bringing me in to just tell me there is nothing there and to give me back my discs I took to him. Hopefully they would have just mailed them back to me if that we the case. Anyway, I guess in a few days I will see.

Add another one.....

2010-04-18T11:10:00.003-05:00

to the growing list of doctors. Does it ever stop? I guess when the insurance runs out, huh? I am blessed to be able to go see these doctors when I need to though! This past week I saw the new rheumatologist and had more bloodwork done there. No real change in info compared to any other rheumatologists I have seen. He was a bit more personable though. Basically, I have an elevated ANA, which is a soft sign for Lupus/SLE (and possibly other things). I have low blood counts, both red and white, which is another soft sign of Lupus/SLE. I have hair loss (been experiencing this for a year now) but I am not going bald, which is a bonus. I have some other minor symptoms but nothing that he can make a 100% diagnosis for, or against Lupus. He wants to continue to watch the levels and see me back in 3 months. Basically I am where I was before.....but with another doc to add to the list and another part of town to visit in the future. This one is in far south Irving.

I saw my vascular surgeon(who I think is AWESOME) finally in regards to my MRV I had done. He seems to think there is something to the MRV to be looked into in terms of CCSVI. The neurologist looked at it and said all is normal - but she is looking at it based on info pre-CCSVI research. She has basically said she personally has not looked into CCSVI and seemed pretty dismissive about the whole possiblilty. I personally think that if there is something out there that could be a cause/issue/resolve for my MS patients (if I were a doc) I would be looking into this further and seeking more info to help them, especially when they are seeking it out through you and doing this research themselves already. Needless to say, the vascular surgeon even made the suggestion that it may be time to look for a more proactive neuro. I think I am in agreement on some levels. I just hate to mess up my treatment as it is at this point. Although, now may be the perfect time as the treatment (IVIG) is actually going through a whole new doctor whom I have yet to meet......hmmmm......time to contemplate some things.

Anyway, I ran my the MRV/MRA discs to yet another doctor that I will (hope to) be adding to the growing list of practitioners. He is a vascular specialist who is seeing patients with MS, looking into CCSVI. He is actually at UT Southwestern, which is a trek, but closer than anyone else at this point. I am very interested in seeing what he has to say. He was out of the office some last week, and I hope to hear more from them this week. I want to get this on the move, as I have been trying to get anywhere with it for months now. I have yet to hear anything from the Buffalo research and who knows if I will ever.....

Possible....

2010-03-15T12:28:00.002-05:00

L'hermitte's sign again......random tingle in my middle fingertips and some numbness in the hands when I move my head downward. Been a while since this has happened and it started again last night. Hmmmmm.....

My neuro visit today....

2010-03-10T19:47:00.004-06:00

So I went to the good old neuro for a follow up today and as most times it was a long wait. It was a quick visit and we covered lots of info rapidly. My WBC & RBC are still low, I am pretty much anemic at this point for some reason. I have to folow up with the Hematologist again to see what he thinks is going on. My B12 levels are low....way low....so she started me on a 4 week series of shots to see if that would help. We decided for now I will stay on IVIG as I have been and keep watching the blood counts monthly.

My ANA levels are still high so she wants me to see a Rheumatologist [again] even though I have been to several over the years and it has seemed to be a waste of time really. I am not totally on board with the idea but I guess I will go for the sake of getting her to stop bothering me about it. At least this way, I can say there, I saw one.

I have had a headache for 3 days straight now - no fun I can tell ya that much! I am not sure where this one is coming from either, but there is nothing that is touching it. She gave me a steroid prescription today so hopefully that will help.....I have to feel well, the cruise is around the corner!!

Ken was reading something the other night that the Wheelchair Kamikaze had written and it touched a little on Lyme Disease. I have not really mentioned much about LD lately on my own dealings, but I have been discussing it on the flip side in Facebook and email world with several people who have found me through this blog in the past few months. It {what Ken was reading} made me wonder, as every once in a while it comes full circle, LD TO MS, and makes me start thinking about the possiblities once again of WHAT disease(s) DO I HAVE? Many people think that MS is linked to an infection like B. Bergdorferi (spirochete) going untreated longterm thus causing the issues many of us deal with later in life, and are eventually diagnosed with MS. Some people are never diagnosed with LD, but could it be that they were never tested correctly? It may be that we will never know....AND it may be a wild and weird coincidence. I have both diseases, unfortunately, but I deal with the day as it comes for the most part. I am blessed - and I know things could be worse, even if they could be better!

Well, I got the MRV back and I am not sure what it shows. I do not think there is enough info on it for my doc that was interested in looking into this further. I have put my name in for another study in Buffalo to see if I can be looked at there. Maybe it will get things moving....I am interested to see if there is any weight inthe CCSVI theory on my part for MS. Here is one of the scans.....

Gearing up....

2010-03-08T21:50:00.003-06:00

for a busy Spring. We are about to head for a cruise!! Yea!! I cannot wait. We have not had a family trip in a while so it should be a good time. Also it is finally starting to warm up some around here and we are able to get out of the house a little bit. Looking forward to some field trips for the girls for school and we will all be glad when pool season is back in swing this year!

Today I have been dealing with a major headache. I hav experienced a few lately and I am not sure if it is the weather or that I finally started back on IVIG and my body is just not used to the meds since I had been off them for a little while. I do not like having headaches, it makes it hard to even look at the computer screen which really messes with my Facebook time as well as my work, and some homeschool stuff we need to do at times. Priorities, right?

The new infusion center is not my most favorite place in the world. The are understaffed and slow. The place is one giant room with many chairs in it for everyone to sit around and stare at each other for hours. Totally not my cup of tea. I miss my old place where I was generally in a private room and had to only deal with the ocassional nurse. I do appreciate my headphones and wireless internet - and working from wireless connections. I can immerse myself in hours of that or watch TV online and not be bothered by anyone really. Usually I work as I can do lots of this while there, and get paid while paying the docs. It really is no where near an even trade I tell ya!

Well if you are reading this and want to check out another MSer's blog that has a very different perspective then I do, check out www.wheelchairkamikaze.com. He has somepretty interesting stuff on his site!

Oh Yeah, Ride for My Bride 2010 is around the corner..... if you feel led to donate to my hubby for this year's Bike MS 150 Frisco to Ft. Worth, please click the link above and send a little cash his way! He is trying to obtain a leader's jersey this year so every dollar really helps!

Diet/Cleanse

2010-02-14T11:30:00.003-06:00

OK, so this week should be pretty interesting for my love and myself. We are going to attempt a 7 day diet/cleanse that is pretty much all fruits and veggies. Check this out.....GM Diet. I do not think I will have too much of a problem with it, I almost did the same thing after my Gallbladder was removed just because it was all I felt like eating. We know someone who did this and they lost 18 pounds and have kept it off!! I would like to lose about 10 at least, as a boost, We are getting back to our workout this week after being sick all of last week as well. If all goes well, I may do this once more before we leave for our cruise in March. I will try to keep up on the blog daily to track my progress. I just ordered a new dress for the cruise.......hopefully this will help how it looks when it comes in! :)

I am off to go shopping for loads of produce today as our house is bare.....gotta make some wonder soup as well. Go veggies!!!

February 2010

2010-02-08T16:47:00.002-06:00

is off to a wunnerful start! I have gotten sick.......a cold has finally done it. I have pretty much been WELL, not ill, without sickness, sans illness,.......HEALTHY......until now since last June when I started doing my IVIG treatments. This was great! It seemed like every time I turned around I was getting sick from something prior to that, and it would take forever for me to shake whatever it was. Finally the IVIG gave me that boost I needed and I got over the immunity issues....until New Years rolled around. Happy New Year to me......new insurance and difficult to deal with companies cause issues in continuity of treatment [when there should be no issues]. So I have been without my IVIG treatment, that I would normally receive every 2 weeks, since December now. This is what has contributed to me getting sick. I was scheduled to start back up with a new infusion center tomorrow but due to getting sick, I have had to put off this treatment until Friday. I hope everything works out fine with this new infusion center and there are no problems going forward.

Tomorrow I also have an MRV scheduled in Lewisville. This is in hopes to find out something relating to CCSVI (or not) and maybe get an idea if this is something worth looking into anymore or being done with altogether. Right now I am still on the list for the study in Buffalo but those people are so backed up, who knows when it will ever come around if it even does.

My bloodwork is still all over the place. My white blood cells are still low......and I have limited my meds to the bare essentials to see what that will do, if anything. I am beginning to think this is not related to the meds.....but I am not sure. I will have a new set of labs drawn right before the treatment this week and we will see how things look from there.

Upcoming Neuro visit this week.....

2010-01-24T19:10:00.002-06:00

and I have loads of questions for her! She may not be very happy with me either! I have not been able to receive my IVIG treatment but I have found out it is their fault and nothing much I can do about it. They accept my insurance, but are not willing to accept the negociated rates on the treatments. What is that all about?? She is the one who was pushing this treatment. I don't know if I want to go back on it now.....I think I have been feeling pretty good since I have not been on it, but I may just want to do it once a month instead of 2 times a month like they had me on it before if I do go back on it. I still have not been on the Betaseron since around Christmas. I had bloodwork drawn last Friday so I will see this next week what my labs look like being on the minimal meds I have been on for the last month. I have a feeling things are going to look pretty decent.

I am also planning on asking her about getting an MRV done on me since that is about the only test I have yet to have done and I am not hearing anything from the vascualr doctor at this point. i had really hoped he would be the one to follow though on this for me. I really like him and think he would be a great doctor to do work with CCSVI patients.

I think I may have cracked my tailbone yesterday at a skating party. I am in pain and think that will be mylast attempt to skate. I am way to old and uncoordinated to do that like a teenager any more! My rear end HURTS!! I also tried to take out my left knee cap and bruised it up pretty well falling straight on it. It is a little swollen today.....hopefully I can get back to my treadmill walking tomorrow without any issues!

To treat or not to treat.....

2010-01-18T17:36:00.002-06:00

is that the question?? I have been off all of my MS treatments since 2009....sounds like a long time, but only since the end of December. I have not started taking my shots again, and I have not been back to IVIG due to issues with insurance. I reduced my meds in all and I only only taking meds to avoid my migraines, those that keep me sane, and the thyroid meds. I have actually NOT had a headache and I have felt pretty decent! I have only experienced a little fatigue but that is almost always there. I did just start trying to go to the gym and walk the treadmill every day (well 5 days a week at least) and so far I have increased my distance by 1/4 mile a day and added a little more speed and incline to the workout. I did 2 miles today....not bad since I have done NOTHING as far as working out in the past year or so.

We are going on a cruise in March - I am ready as we are going to Roatan, Honduras. I have been wanting to go there and we finally booked! WOOOO HOOOO!!! We did not get to really do a vacation this past year as I had the 2 surgeries and it was just a lot going on with the IVIG starting too. I am ready to go - hopefully it will be a great family trip!

CCSVI....(cue the music)

2010-01-02T20:09:00.006-06:00

CCSVI, No, NOT CSI.......it is not a new crime show on the TV. It is a medical problem I have been looking into recently that may be a root cause or source of problems for MS sufferers. There is a study going on in Buffalo, NY, that I have signed myself up for in the hopes of looking further into the problem of venous narrowing in the drainage to/from the brain and if there is any possibility that this could be part of the MS experience I am having. I have suffered with migraines that have no source for so long, that who knows, maybe just maybe this could be "IT". I sent my vascular surgeon a message and some info on CCSVI asking him to look into this and see if he would be interested in testing or helping look into this further. He told me he would look into it some more but I have not heard anything back from him yet. Every day there is more and more in the news about the research and possibilities and it looks promising - this could change the whole MS world. I do not think "pharma" world is ready for that.....whatever would the money hounds do? I mean IVIG treatment are 100K a year my insurance is paying, and the shots are 30K....not to mention all the doctors who get money from the frequent visits. WOW!

In the meanwhile I am also waiting on another series of bloodwork results. After seeing the hematologist, he suggested that I had been exposed to Hep B. I have never had any Hepatitis serology done that I know of, so this was news to me. He did not ask if I had ever been vaccinated for it, which I had been, back in the days of being a nurses aide....years ago. So I went in to see my GP, Dr. V, as he is more familiar with my history of low WBC and things of late and I wanted him to see this latest bloodwork series. He decided to run another series as part of what he would look at was missing from the hematologist and he did not think there was enough info there to make a diagnosis of infection. I am still waiting on the results from that. He said it could take a couple weeks to receive that info. He aslo said he would not worry about the ANA titers and that the levels were not that high to cause worry to him.

I have taken myself off Betaseron for a few weeks to see if it may be a main cause of the WBC being low. One of its side effects is "possibly" lowering the WBC. So, I decided I would stop the shots for a few weeks and let my system clear out and see if that made any difference in my bloodwork. I have been off the shots for about 3 weeks and when I did my last bloodwork it had been about 2 weeks. It will be interesting to see if there is any change......I would love to not take a shot every other day again, but not because it is causing my body problems. I would rather it be due to a cure from the CCSVI or something like that! :)

Explosion or Implosion?

2009-12-09T16:43:00.005-06:00

I do not know what is going on with my body right now but I do not appreciate it for sure. I have had a headache for days now and it still continues. Driving yesterday was strange to say the least. I literally had to call Ken and ask him where something was because I could not remember. That is so not me....I do not get lost or have problems with locations or directions. I had to stop and rethink about where we were actually going after we had been driving for a while as I had totally spaced it and did not remember where we were going. It took a minute but it kicked in and I was fine......I kinda got spooked for a minute thinking about the "what if's" that could happen, but I had to get past that and continue on with what we were doing. I was all over Dallas all day yesterday as well. I had to go from Aubrey to Sachse, to Carrollton to Lewisville, to Irving, back to Carrollton, then to Denton and finally back home. I was mentally exhausted by the time we got home because I was focusing on the task at hand.

I still have not heard anything on the MRI. I hate waiting on these things. I am sure I will hear about the newest blood work in a couple days.

On a good note, we had family pictures taken over the weekend and they turned out really well. My friend Tori did a great job! http://www.recollections-photography.com/

My head is swimming.....

2009-12-07T16:22:00.003-06:00

but I feel like the rest of me is sinking. I am sluggish and tired. I want to crawl in bed and stay there.....I think I would if I did not have things to get done. I literally feel like the old commercial that was for a cold medicine...."medicine head".....where the balloon was lifting off the cartoon head. I feel like that but it is not a cold. I wish it were so easy.......

I just got a call from the neuro's office. They want me back to get more blood - VAMPIRES. My ANA titer was off - which it has been in the past, but she is worried about it, as she has never seen it, only my other docs have. I have been looked at for SLE or "Lupus" before with no positive diagnosis only "possible" multi-connective tissue disease. Auto-immune stuff really sucks......this past week has been for the birds, I tell ya! I am not supposed to do any more IVIG for now as my WBC was lower again this last time and the doc is telling me to hold off on any more treatments. I still have to get my blood looked at every week once again to see if there is any change, and once I make it in to them, we will see what the hematologist has to say about all of this. As for now, the neuro will run a full ANA panel and we will see what that comes up with.

Until then, peace up, peace in, peace out....

Slacker Update

2009-12-05T13:42:00.002-06:00

Well, I went to the neuro and she decided I have been in an Exacerbation or that is what it sounded like with the brain fog and fatigue I have been dealing with lately. She thought it would be best to start a three day dose of Solumedrol (IV Steroid) which I have never done before and never really wanted to start doing, but this time I conceded. I figure I will try it at least once and see if it benefits me at all. I think I was freaked out by the thought of what it could cause my Lyme to do in the past, but I think I am out of the woods in the case of LD now. So I did the first dose of IVSM in the office when I had infusion on Thursday and it went fine. They then arranged for a Home Health agency to come to the house an deliver the next 2 doses to me and show me how to administer the next treatments myself. We left an access needle in the port overnight and I did the final dose today and removed the needle after it was finished. I have seen this done several hundreds of times now so it was really nothing new to me - I just actually had to do the Heperin lock on the port line myself rather then the nurse doing it like after my IVIG treatments. No problem there! I also had another round of MRIs run yesterday to see how they compare and see if there is any new activity. I do not know when I will hear anything back on them. I do not have an appointment for follow up with her until the end of January.

I also made the appointment to see the Hematologist, but cannot get in to them until Dec. 22. The neuro took about 8 vials of blood for her own tests the other day to compare and see what the hematologist has to say when they look into the blood as well.

We are also looking into CCSVI and possibly going to have me tested for this as a possible cause or problem leading to some of my symptoms. I sent some info to my vascular surgeon and I hope he will be interested in looking further into this and helping me out - but I have also listed myself as a candidate for the study. I would have to fly to Buffalo to do the testing but I am willing to do that! It sounds pretty promising! Anything to advance research right.......

Call Me Slacker

2009-12-01T19:06:00.002-06:00

I have not blogged in so long. I have not felt like it. I am not sure why really but I just haven't. I guess it could be the obsession with Facebook competing with my bloggin time. What ever did I do with out Facebook in my life?? How did I ever get along? I am sure I was more productive but felt less "connected". Why is that?

Anyway, I have been doing pretty good I guess. There has been nothing huge in the medical department which is a good thing, right? Well, we have been watching my White Blood Cells play like a yo-yo and go up and down constantly for months now. I maintain a relatively low average count anyway, but it is staying lower than normal now. I will be seeing a Hematologist soon - made a call to one I am familiar with today. I have a follow up with the neurologist in the morning. I have had some brain fog the past couple weeks. I seem to have some short term memory loss, more than normal, scatterbrained like - where I would not normally do silly things. I have been brushing it off (to busy-ness) but Ken mentioned it tonight so it is noticable to others. Great!

Invasion of the swine

2009-10-21T00:43:00.002-05:00

FLU anyway. Well, it hit our house this week. My youngest caught it, but not sure where from. She started running the high fever, then the cough and runny nose came on pretty fast as well. She has been a lump on the couch for 2 days now. We went to the doctor this morning and he gave her and me some Tamiflu. Hopefully it will do it's job for her and cut things short, and prevent the flu from settling in with me! I do not want to deal with it myself! I have been feeling a little rough on and off for the past few weeks anyway and not really gotten sick, but just been achey with headaches. I have been a little more run down feeling lately and tired but hopefully it is nothing. We have been running and doing quite a bit!

My Baby Kennedy (TMI.....for the weak)

2009-09-29T22:50:00.004-05:00

It is hard to think of anything serious being wrong with your child. I have friends with children that have a range of diseases or illnesses or conditions, but my kids have always been the healthy ones really(we thought). I guess that has been a blessing since I am the one who is always getting sick or having something going on medically. Last week we wend in for along overdue and needed "well-child" check up with our pediatrician. Kendra was overdue on a couple of vaccinations and so we caught her up on them - nothing too major. Kennedy on the other hand, well, I had many issues that we have discussed over the years that we needed some follow up on. Mainly - her bowel issues. Since birth she has had BM problems and it has never really been an easy one to resolve. She produced meconium for longer then she should have after birth, and since then she has had issues going poop. We initially switched from breast feeding to formula, then to lactose free formula and that helped a little but she struggle to go poop all the time. It seemed painful! We went through Karo in the bottles to Miralax. Once she started on table food, we tried lactose free milk when she quit formula. After she turned 3 or so, she quit drinking milk, but loved yogurt, and cheese and all dairy. Since then we have had issues with getting complete potty training down. It has been a battle of wills at some points, other times it is just a sheer volume issue. The kid can back up a toilet like nobody! Now she is my daughter and she is stubborn, but I played with things some (in her diet) and notice a difference when she is not eating dairy....but it is still not "right". She is not in control of things the way an almost 6 year old should be......So the pediatrician referred us to the GI doc and we saw her today. She took xrays of the belly (which showed a large amount of stool in the bowels), did a rectal exam and noticed the hard-ness of her poo, took 3 vials of blood to run tests for Celiac disease, thyroid issues (which is in the family big time) and allergies - so hopefully we will find out something from this. If not, she will see us back in a couple weeks, and we may have to do a scope and take some pictures of her insides. We are also doing in process of a bowel cleanse with magnesium citrate to "clear" things out. I know TMI....

Just another exciting day in the Ballard household.....what's next??

Blogging Limbo

2009-09-16T12:17:00.002-05:00

I seem to have been in a blogging limbo lately. I have not felt like doing it. I have been pretty busy.....we are back in school now and I am also working. This is also our busy time of year, from September to January. I am pretty healthy - just doing infusions right now. Been losing weight and since this time last year have lost 40 pounds so that is great!

Ken was recently asked by one of the heads of the local MS chapter to blog for the next 6 months while he fundraises for the MS150 in May and gets ready for the ride. He saw one of his videos on You Tube that he made about me and MS last year. The guy just thought the video was awesome and wanted to link to it on his You Tube tab as well. Ken makes some pretty cool videos, but then again I am partial to his work.... :)

Our nephew, Geramy, and his band, American Lab Rat, are doing a show to benefit MS, Dallas Rockers 4 MS coming up on the 25th. This is pretty hard metal music, but it is also pretty good if you dig that type of music! Check them out, and come out to support the cause! It is so strange to think that Ken got him into guitar when he was 13 and now he has a band that is making a name locally for themselves and doing things for the community at the same time. I am pretty proud of him - he kept himself out of trouble in his teen years by taking the music route and when many people did not believe in him, we have always supported his love. I would love to see him go far, he is a pretty great guitarist!

School's in Session

2009-08-25T20:18:00.002-05:00

We started school the week after my surgery. I had to do something and I was motivated and we went full on into it......and it was good. We have been on a regular schedule and so far there has not been too much of a melt down, or struggle but a little slow walking by the eldest child. Some days she makes school an all day task. Today was a good day and we had fun....we need more of those days! Other than that I have been planning the year's field trips and outings and trying to get our schedule locked down around my various appointments and work.

I go in on Thursday to have the Power Port put in so I will not be bruised up anymore when nurses cannot locate my poor little veins. I am bruised on both arms from last weeks infusion where there was three misses before the vein was found. I look like a addict who shoots up.....yuck! Anyway, I should not have any issues with that after Thursday afternoon, God willing.

"Parts is Parts"

2009-08-07T09:16:00.004-05:00

And I have a couple less inside me then I did yesterday. I had my gallbladder removed and some tissue around the colon that had twisted up and died. Dr. McQuaid took loads of pictures taken of my insides for the Gyno. to take a look at. He found signs of Endometriosis and more cysts on my ovaries along with a part of the abdominal wall grown over on itself, that he detached while he was in there. The gallstone(s) were gone so they had passed but the gallbladder was inflamed and did not look good so it was a good thing it was being removed anyway, and I will not have more issues there. I feel like I was kicked in the gut and the side and the back. I think 2 c-sections were less painful than this surgery! It was laproscopic but they blow you up with CO2 so they can see and have room to move and work and there is 4 incisions - one being in the belly button.....that one is where they remove the parts through. I am very sore there today. I will be going back to the doctor's office today to have the dressing changed on the belly button as it is still oozing and tight now. Fun stuff right.....? I have been blessed with many prayers and calls and friends offering dinner or making dinner and offering to take the girls so I can rest. Ken is off until Monday so hopefully I will be much better by then!

Another Sunday night....

2009-07-28T13:42:00.003-05:00

in the ER for me. We came back from a nice little overnight trip to OKC to visit some friends and I had been experiencing some pain in my side for a few days and it was getting worse. I started running a low grade fever as well and we were worried that I might have appenicitis. We headed for the ER about 6:30 and got in pretty fast but that was all that was fast about the evening. Ken and I sat and sat for hours waiting on things to happen. I finally had a CT scan around 10pm, then after midnight the radiologist finally read the results and they decided it was NOT appendicitis. They could see I had a rupturing cyst on my right ovary and also happened to find out that I have gallstones - fun stuff! At least it was not just gas! At his point I have multiple bruises up and down my arms from infusions, blood draws and IV attempts/misses, and look like I was beaten or do drugs one. I have an appointment tomorrow with a surgeon to see about removing the gallbladder. My regular doctor said it was probably the best thing to do since I have so many other things going on right now and we have already met all out of pocket costs on the insurance. The surgery will be laproscopic so it will most likely be a day surgery. Who knows, maybe the doctor will be able to do the port at the same time??

I hate getting stuck....(warning for weak stomachs)

2009-07-24T11:52:00.003-05:00

with these dang IV needles every two weeks (and more with random blood draws). I have the smallest little veins and they are so finicky and like to roll and run away from the needle once it has penitrated the top layer of skin. I do not have the typical normal elbow area veins where most people would have and IV or blood taken from, those are almost no existant. I had an IV for 4 solid days during the induction of the IVIg 2 back in early June that was on hte mid right forearm and it is still bruised and the vein is still weakened. They tried to give me the IV there uesterday and it seemed to be working fine for about 30 seconds, then it blew the vein about 3 inches from the insertion point. My nurse, Sharla, was just shocked at where it blew as she had never seen that happen before. It makes a nasty bubble under the skin, then it bruises nicely. I bruise so easily anyway thes type of things do not help! After that happened, she moved up to my upper arm close to the armpit and found a pretty good vein there and we got the infusion going. Allwas fine through the 3.25 hours - I even slept about 2 hours of the time curled up in the chair under a blanket listening to Pandora. Once it was time to pack up to go, I guess I pulled the IV some and caused an infiltration (where it pulls out of its place) and the last 10cc's fed into my arm under the skin instead of in the vein. This med is actually designed as a subqutaneous treatment so that is not a problem - EXCEPT it hurt, itched, burned and caused a huge knot on my arm when the meds were sitting. It looked like I had an extra muscle on my inner arm -HA! I came home and put the heating pad on it for a couple hours and the area went away, so all is good now. I do have a bit of a bruise in the area and it is a bit tender, but what do you do?

So when all of this was going on, the nurses were asking me why I did not just get a port (portacath) put in for these infusion. I spoke to the doctor about that in the beginning and she did not persue it. I have such issues with my veins I think it is something I will be looking into further. i know my brother hated his, when he got it for cancer treatment. I also think that he was dealing with alot of pain associated with his cancer ravaging through his body at the time. I am tired of being dug on and bruised for weeks at a time and sore from the needles. I have to do this treatment every two weeks now and give blood often for testing. This would make all of that so much easier!! I think I will let the nurses look into it.

This coming week I will be having the first MRI since I started the IVIg. I hope and pray there will be some improvements on the lesions showing that this treatments is doing something for the MS as well as the immunity issues I have been having.

Infusion bills, insurance, government.....blah!

2009-07-17T23:18:00.003-05:00

The MS medication industry is right up there in the way of costs with the cancer field. My first week of infusions were outragious - well, the insurance billed amount was. I just had my second round last week, and I will be taking them every two weeks now. This is a lifelong treatment....or until something better comes along. Until then, we have about 7 years, bar no big emergent bills, before the lifetime max on the insurance is reached. Wow, I will just be a little over 40 then......what will we do then?

Day 4 = $9,919.05

Day 3 = $9,619.05

Day 2 = $9,919.05

Day 1 = $9,969.05

Total = $39426.20

The hot question lately is about government run health care or mandatory minimum health care benefits for everyone.....stay out of my business, I say. I now live with several life-long health issues and I cannot imagine not having insurance, but it cannot be forced onto us in the way the government is wanting to do. It will fail....

Post Infusion [15 days]

2009-06-23T15:44:00.003-05:00

I am 2 weeks from the start of my first IVIg infusion and I feel really good. I have NO more sinus infection....it finally went away!! Big benefit of the IVIg there in itself! My energy level has been pretty good as well. I think I have had pretty good days overall and not really any bad days to speak of since the last day of the infusions. I go back on July 9th for the next round of infusion and then i will start going every 2 weeks. I will go back in mid July for another MRI to see how the lesions are doing and follow up with the Neuro shortly after that. Right now I have to go and get bloodwork done every couple of weeks to watch my white blood cell counts and liver and kidney levels.

I have been receiving hits on the blog quite a bit here lately from the web. I enjoy talking to people about LD and being able to help them if I can. It also lends to those who think they can give advice yet wish to remain anonymous.....often they tend to not know my situation and what applies to me. I love meeting new people and talking about these diseases, be real and honest with me and I will do the same with you! Otherwise, there is no need to even take the time to send a comment to me!

Summer Time Fun

2009-06-19T21:44:00.002-05:00

Well, last years pool frustrations have finally paid off.....and the kids want to be in the pool ALL the time. They are having a blast and we are swimming alot. This one is turning into the snorkle queen, and she picked it up on her own. She is pretty good at manuevering the whole pool with the snorkle and mask now. They stay on their tiptoes in the pool so much that they break the skin on their toes open all the time from rubbing on the pool plaster. We are going through the bandaids...I need to get them some pool shoes. Even their little finger tips are getting blistered from rubbing the walls. But they do not care!! I think they would swim 24-7!!

Infusion Day 1

2009-06-08T10:21:00.003-05:00

So here I sit, having my first round of IVIg infusion and will be here for another 2 hours. The IV was not too bad......Sharla, the infusion nurse, is really nice and did a good job. After about 10 minutes of the IV, I started to feel a little light headed and loopy. It only lasted for a few minutes and then it passed.

It's a GO!

2009-06-03T16:47:00.002-05:00

So next Monday I will be starting the IVIg infusion treatments. The infusion nurse called today and said that the insurance approved the treatments. WOW! I was surprized! Next week alone is a cost of around $20000.oo dollars for 4 days worth of induction, and then I will go back once a month for an infusion and it will cost around $10000.00 a month I believe. Our insurance will cover the complete cost after we meet deductable(already there) and $3750.00 out of pocket. We are about $2800.00 shy of the out of pocket right now.....BUT then I will be covered 100% on everything else for the rest of the year. WOOOO HOOOO......you know you are getting old when you get excited about meeting your medical deductables and out of pocket expenses..... Sad! :)

I went back to the ENT today and he is changing my antibiotic again. I still have a sinus infection but it is migrating all around now. He seemed excited about the IVIg treatments. He seems to think I will feel much better after the treatments and will see great improvements in my infections and allergies. He thinks it is a great thing so that we can avoid surgery!! YEA!! I was not looking forward to sinus surgery at all!! The more I read on it, the better the benefits are sounding to the infusions.....I am just kinda nervous about the IV part now. I hate being stuck and dug on because my veins are so little and I bruise so easily.

What will be the next step for me?

2009-05-29T14:32:00.005-05:00

In my MS treatment.....that is. I am working on figuring that out at the moment. After my MRI last week, I learned that I have apparently had some silent lesions working although I have been physically feeling well lately (besides the pesky sinus issue). I have some lesions that have enlarged and a couple new areas with lesions that were not previously there. In total I am looking at 4 places that have grown or become active since last August when my last MRI was taken and I had been showing improvements. I was shocked and almost in disbelief when I first heard the info. After a while I worked it back into my head that I know there can be progression with out symptoms....it is a fact of this disease. Many people will go undiagnosed for years with silent lesions then one will hit in just the "right" spot and bam....they do an MRI and tons of them will show up and eveyone will be surprized. It is almost like 2 steps forward and 10 steps back, or it feels like it anyway. The doctor talked to me about the options....or lack of, really. This is MS, there is NO cure. Steroids are pointless really as we do not know when this happened, and so what would that help, nada? Switching interferon meds.....well, same sort of meds may not really be any more effective, as the one I am on is one of the best, and why beat a dead horse(still taking it, not changing)? The other form of med I chose not to go with, as she also choses not to use, Tysabri, due to the extreme side effects and deaths it has caused. The other option is the IVIG treatment option she has talked in the past a few times. There seem to be many benefits to the treatment the more I read about it. I have decided I will do it, if my insurance covers it. It is not cheap by any means, even with insurance I will be paying alot of money out. I just want to feel good and get through this sinus stuff....I thought I would be good once that was done. I go back in 8 weeks for another MRI to see if anything else has happened in the meanwhile. I am currently waiting for the insurance to verify the request on the IVIG treatment and then we will go from there.

It's the Debil Bobby.....

2009-05-26T18:38:00.002-05:00

I tell you the internet is the Debil! And it sucks me in....being that I am a self-taught graduate of ER's medical school and can diagnose myself with the help of WebMD and PubMed.......no problem.

Seriously though, I can let my mind get away from me sometimes when I get calls from the doctor about MRI's that are not what you expect them to be. Tonight at dinner the doctor's assistant, Matt, called to tell me that my blood work from last week all came back normal. That is awesome, my liver and kidneys are all ok it seems. I then asked huim about the MRI as I had not heard from anyone on that yet....oh yeah, Dr. Cantrell made notes on that here, she says.......(uh, um, if I can read her writing...) um, hang on.....ok, the MS lesions are larger it looks like and active so she wants to make an office visit to discuss treatment options. When can you come in?

That is not really what I was expecting to hear. I mean I have been feeling fine....not any symptoms really lately. I thought I would see vast improvements by now on the Betaseron. It makes my mind race and wonder. I want to have the reports and MRI cd right here so I can look at it on my own. I have gotten pretty good at reading them and comparing them for myself over the past few years. I am glad I get to go in tomorrow and do not have to sit and wait around for too long to stew on it. That would push me over the edge I think. I am already frustrated that the new antibiotic does not seem to be doing what is hould and I and supposed to be going back to the doctor for that on the 3rd. I guess he will be able to look at the new MRI and see what he needs to see there as well.

Prayers - I need them right now - for peace of mind and health of the body & mind!

When do we really become old?

2009-05-21T00:30:00.002-05:00

I mean it??? I have never really had an issue with actual age. No birthday has affected me like 30th might, or the dreaded 40th as it does some. I think I have honestly never had any problems with my age at all. I am however beginning to think that, mentally anyway, age might be becoming an issue. I feel more overwhelmed by things in such ways that they might have never bothered me before.....I am not having regrets about my life, but looking back at friendships from the past and wondering what happened to them. How do they drift away, or fade like they do? Why does it seem like it was only yesterday that we spoke to someone but it might have been 20 years since we saw them? Seriously.....I think Facebook has done this to me......

I tend to be a deeply caring person, once you are a friend, you are usually more like family. I adopt people....I love them, hurt for them, and with them. I would do anything for someone like this I was close to.....even if it has been 20 years (give or take a couple). It is getting harder to reconcile the pictures in my mind with the reality of today, sadly. I know and understand people change and may not have the memories of yesteryear that I do, but it is still hard to wrap my head around at times. Can you ever really go back and pick up where you left off with an old friendship? I have a few friends that I have been blessed to be able to do this with.....very blessed. I wish I was able to be closer to a few more old friends........maybe in the future?

Conservative or Liberal....

2009-05-17T19:54:00.003-05:00

Are these really just 'labels'? I mean if we are truly Christians, shouldn't we just be Christ followers? Wouldn't we want to "do the right things" and live a life according to what the word of God as written in the Bible? The book is the one living book, so it speaks to us all differently each time we pick it up. We each have to draw from it what we can.

I was recently reading a book called "Do the Right Thing" by Mike Huckabee and he had some wonderful insights on this theory. It was not just a political book of rhetoric but also an 'in your face wake up call' for some. I think many people have really forgotten what general caring and care-giving actually are, when it comes right down to people. We tend to get so tied up in the necessities of the "laws" and ideas what others are doing, we forget to remember the grace and love we are meant to show each other. I think that is what God truly meant for his people. We are born sinners, every one of us - we have to train our children to be "good" and we must chose between the good and bad daily. God gave us this gift of free will and His gift of grace but we must be able to discern what to do with both. I find that in all reality it is not a hard decision to reconcile. I know I do not have to agree with everything that everyone does, as they do not have to agree in turn with me, but I can also love a person for being the person they are, knowing that God made them, and they are special and here by the same grace that I have been shown. This may be a more difficult task with some than others, but I think this is the test that God has given us all in our life. Difficulties, love, compassion, grace, forgiveness......we are all truly blessed, even on our worst day. I firmly believe that one bad day with Christ is far better than an eternity without Him!

Taking a step back....

2009-05-17T18:10:00.002-05:00

for a while. I am going to stop most of my large group interactions and extra things I do right now for a little while. I have been sick for about 2 months now with an ongoing sinus infection and decided I needed to get over it! I went to and ENT and he agreed that I probably never got rid of the infection that sent me to the ER in March. I have a sphenoid sinus infection, which can get to be pretty bad if it goes untreated or gets to bad. It is close to the brain and can cause infection in the brain as well. FUN, not. Anyway, after my 3rd round of antibiotics that were not doing anything, he switched me to Levaquin and a decongestan and another steroid pack. I go back to see him in 21 days to see how I am doing after the new treatment and we will go from there. I saw the neuro the following day and she was good with the course of treatment but wanted to do a new round of MRI's (will be done on Tuesday) to compare to the last set as the CT scan made mention of some white mass she was not sure of. Great.....really I am not too worried about it as I have been doing really well on the MS front. I have been feeling good (other than the sinuses) and do not have any MS symptoms that I can notice for the time being really. I just hope this works and I get to feeling 100% better - I am tired of feeling bad! I do not look forward to the possibility of major surgery either.

Blogging Blahs

2009-05-07T11:50:00.003-05:00

I have started a few blogs lately then been sidetracked or just not felt the need to post them or even complete them. I have had the blogging blahs I guess. I have had a lot going on but not much to say about it maybe.....or maybe I have not know what to say about it.....I do not know. In April we made a trip to Atlanta to see my best friend, Ginger, who moved there in January. What a beautiful place they bought! It was a wonderful, but quick weekend! We got to celebrate Arden's 3rd birthday while we were there and just hung out and enjoyed each other's company - no running around seeing the sites on this trip - it was just about seeing friends! I tell you I will fly next time I go though - that is a long drive and I am not up to that much time in the car! :)

We kicked off the Adventure Kidz Band at church in April also - kinda like a Grounded part II as most of the old band is back together playing now. I have ending up being sick pretty much most of the time since we started back up so I am not much good to the group. Since I had my trip to the ER at the end of March I have not been able to shake this sinus thing in my head. I am on 3rd round of antibiotics and still not feeling well. No rest for the wicked either.....

Ken road in the MS150 Frisco to Ft. Worth this past weekend. He actually road 50 miles - which ended up being 1/2 of it as it was called due to the weather. He hurt his knee in practice a while back and had not practiced in a while. After he road about 40 miles he was pretty much done....the knee was gone. He had to call me to come get him in Sanger and then the rain set in and the ride was called later that day for day 2. He did so freaking awesome! I can't even imagine doing 3 miles.....he rocks - and he did it all for me! I love that man! The ride had over 4000 riders this year. It was amazing to see so many people doing this for MS and people with MS.

I have decided to go see an ENT as I keep having sinus infections and cannot seem to shake them. I have been sick since late March pretty much when I made that trip to the ER and never really cleared up 100%. I am so tired of feeling bad. I want to have a clear head and no drainage!! I read that the deep sinus infection can be fatal.....that is great! Something to look forward to.....

Stolen...

2009-04-14T18:23:00.003-05:00

I had to "steal" a link to this blog as it touched me and I wanted to share it! Heather is a friend of mine and is so amazing - she has made me cry a couple times this week with her writings...and I am not that emotional of a gal!

Check out Heather's Blog here. I hope this resonates with even one person as it did with me....how wonderful and beautiful this old book is. I will be on the look out for it now! :)

Rock & Worship

2009-04-04T21:26:00.003-05:00

I was in a room full of people last night who came to see a few bands at a little show call The Rock & Worship Road Show at the American Airlines Center in Dallas. It was a walk up show, no presales on tickets, and you paid at the door, only $10 a ticket- and it SOLD OUT the AAC. The bands were Addison Road, Hawk Nelson, Tenth Avenue North, Jeremy Camp and Mercy Me......it was a great show! I had never heard of Tenth Avenue North, but they are a really good band I will be checking out more - the lead singer had a great voice and I really enjoyed their music.

A few years back I went to this little free lunch concert on a parking lot in Lewsiville that Mercy Me did and there was a few hundred people that showed up for it (and I got to meet them and get their autographs), and it is just wild to see the following that they have amassed since then!

Been slacking on the blog...

2009-03-22T18:52:00.004-05:00

lately but who notices? :) I have been pretty busy with my new job and trying to keep up with homeschooling the girls as well. We have all been sick on top of that and trying to do things around the house and still have a life as well. Really, that all is life, right?

Well, this weekend we tackled the beast of a backyard with the dog run finally getting taken care of! Yea!! I talked Ken in to the gate and he made it happen. I now have control over the backyard again and the dog is not the winner - I am! We moved stuff around and started working on the landscaping. Ken planted some ground cover and a few Karl Forester grass plants and the girls and I worked on the front yard all during the week - it was horticulture week at Icthus Academy. We planted tomato and strawberry plants in containers, weeded the yard, bought a hibiscus and a standing pot for it for the front yard and I got it planted today. Found a new place called Laguna Madre in Pilot Point that has cool Mexican import stuff for yards I really like. I want to get some more planters from there for the deck once we get a few more things taken care of. I ordered some caladium bulbs and cannas last week so those should be in here soon and I will get to start planting those. I will also be ordering a couple upright elephant ear plants. I am excited that the pool is starting to evolve and the yard is not just the pit any more. The spring weather is nice and I am enjoying the warm up so I can take advantage of the patio FINALLY!! Anyone want to come hang out??

My weekend

2009-03-18T00:38:00.003-05:00

was a little rough. I started out with a headache on Thursday and it got a little better Friday. Late that night Friday night it kicked in full force and was horrible. By Saturday I was in bed most of the day in extreme pain. As Sunday rolled around I was in the fetal position and trying to just be able to move as I could not hold my head up. I took a shower thinking it might make me feel better but I could barely hold myself up in the shower. I made it out and just fell to tears with the pain I was in. Ken asked me if I was going to the doctor on Monday and I told him I did not think I could possibly drive myself nor should I be driving in this state. I could not handle lights, or sounds at this point but no meds had been able to do ANYTHING and I was beyond my breaking point. Ken shuffled the kids over to our neighbors and they watched them while we made a trip to the ER. Once we got in the ER, they started an IV on me, gave me a shot of Benadryl, Regulyn, and Valium and I dozed for about 20 minutes. We were waiting for them to come take me for a CT scan. They asked me on a level of 1-10 where this headache rated 10 being the worst and I said a 10. I have a pretty high pain tolerance but this was out there! I wanted to rip the back side of my head off - If I could have physically done it, I might have! :) The shots brought things down to a 7 which was tolerable so I was a little better. The CT scan showed that I had a deep sinus inflammation in the middle part of the brain. I was showing no signs of sinus up front - no pain, was not stopped up, nada. I tell you this was the worst sinus thing I could ever imagine going through - do not want to do it again! They sent me home with a strong antibiotic for the sinus, a steroid which helps with the inflammation and headaches, and another migraine med that I have used before. I slept most of Monday while Ken stayed home with the kiddos and today I feel like a normal person again. Can't say I would want to go through that one again EVER!!

A friend of mine

2009-03-10T22:10:00.002-05:00

had a stroke yesterday. I cannot believe it! She is only 38 and has 2 girls close to the age of ours and we homeschool and go to church together. I went and saw her at the hospital today and God is already healing her! She needs prayers still, but she is already doing so much better and feels better. Her daughters were with her and had to call for help when she was having the stroke and were able to - thank goodness! What a good thing to be sure and teach your children....just in case! I have always run throught the what ifs with ours since we live far from town and since I have health issues of my own. I hope I never have to encounter this type of situation but I pray if I do that my kids will always be ready and able to help if needed. If you have kids, make sure yours are taught emergency skills as well!

Direction?

2009-03-01T15:16:00.002-06:00

I am trying to figure out some direction in my life these days. After dealing with the past year and a medical diagnosis that changed my life, I started looking at things differently. Somewhere along the way I became a soccer mom......but I will not ever drive a mini van! Kendra starts playing soccer for a Christian soccer association in a few weeks so that should be interesting. I started reading a book to help me better understand the path my church is on and has been taking. I have many questions, but I do not know where to turn with out seeming like I am up heaving everything in my path. My little one started a one day a weeek enrichment program for homeschoolers and she loves it. They will both be in it in the fall an that is going to be awesome! Fridays are getting to be pretty calm and peaceful around here with only one child here, what will it be like when they are both gone? They need something like this and I need a little break from them to keep us on the course of homeschooling. They have PE, Music, Spanish, Science, Art and Bible.....things we do not always get to, so that is fun for them as well as educational. On top of that I have been working 15 or so hours a week now from home with about 1 day on average in the office if I get the chance to go in. So as for direction, I am going in many right now! :)

I quit...

2009-02-23T20:50:00.003-06:00

I am not taking meds for Lyme any more. I technically have not been for a while as I had seen improvements and no symptoms I could 100% point to the Lyme anymore. My LLMD and I agreed until I have a relapse that I can see old symptoms reappear or new ones of extreme severity that antibiotics are no longer a necessity. I discontinued supplement useage a while back when I felt an overload of medications taking hold of me, but I think I will start back on a vitamin therapy to help boost my immune system some. I have been sick a couple time this year already with mild colds and it seems to be happening very easily. Fortunately it has not become anything more serious which is usually what happens and I then end up with bronchitis or a severe upper respiratory system.

I know doctors have a part in our overall health direction, but I firmly believe that I know and understand what my body is going through, and especially after the past few years, understand and know what I feel like I can tolerate and what is too much. I do not like to overload when I do not see a clear reason for doing something. I do not have the extensive pharmacy I once had in my cabinets. I no longer use a pill organizer like I once had to in oder to keep track of what I was taking and when I needed to be taking them. I am down to Morning and Evening meds and my every other day shot and that is enough!!

Neuro Appointment

2009-02-19T23:33:00.002-06:00

So I had an appointment with my neuro on Wednesday and it was not a very good one in the aspect of length of time spent there! I waited (with 2 kids) in hte waiting room for more than 1 hour before they called me back to the room, and then sat there waiting for the doctor for about 30 more minutes. i tell you I was not a very happy camper and the kids were not too pleased as well. It was a 12:15 appointment which I go there a little early for just in case they could get me in, but nope....I heard other in the WR comlaining about their own waits. The kids did pretty weel for the biggest duration of the wait, but they were getting really hungry. My kids are pretty programmed to eat at certain times and it was way beyond their window of lunch time. I normally would not have gone with out something for them to snack on but we were supposed to meet a friend for luch after the appointment. Good thing we did not have to pick them up from the airport since it took forever to get out of the doctor's office. When she did make it in, she knew I was not in the best of moods and she did not mess around. It was short and sweet and too the point. Things seem good, no problems, keep on taking my meds like I have been and get my blood work done, see me in 12 weeks, thank you and drive through. If it was not such a drive to get there and then an investment I had already made waiting in the office that day, I would have walked out and rescheduled. I can't stand to wait on overbooked offices that are behind and seeming to do nothing about it.......

Anyway, I think I am getting a cold. I have been running around and going and doing a ton of things and my body is feeling it. I am getting sick I hope it is mild and does not get too rough......I am going to bed!

13 years? Yep.....hard to believe it!!

2009-02-17T21:41:00.002-06:00

I have been married to the same man for 13 years now. We have offically been married for 13 years today....we met in December of 1995 and got married 2 months later in on the 17th of February 1996 and here we are.....both still standing. :)

I am blessed to have a wondeful husband who has always taken very good care of me and our family. I knew within hours of meeting him that I would marry him and even told someone this (although they thought I was CRAZY) and I never doubted it because I just knew. We have been through a lot of things together over the years and see lots of struggles within our own friends and families. We have brought two beautiful daughters into the world together, and seen many family members pass on from this world as well. We have both come to Christ together and even work together now. What a path we have taken over the years. I cannot wait for the next 13, or 30, or more......

I have a date in 37 years (or so) with this guy I met back in 1995......

Sharps Disposal Part Deux

2009-02-15T15:39:00.004-06:00

Ok, back when I first started taking my every-other-day injections, I was really bothered by the way I was told to dispose of my needles. read here A few weeks ago I was contacted by a gentleman from a company called Sharps Inc. when he came across my blog regarding the problematic disposal of said syringes. We had a nice conversation about the issue that plagues many patients that begin taking injectable medicines and he told me about the website and their product, a mail drop sharps disposal system that is medical waste regulated. This is something that is a product all patients should be offered through their insurance companies or the companies that provide the medication they are using. My meds come with a complete set up for use, and immediate disposal, but not long term disposal. Many states are not fully regulated in this field yet, which presents the problems I was faced with back when I started taking the shots. I know many others have come across the same issues and I hope this company can be of some relief to them - I know it has been for me! I know they are doing the RIGHT thing with this medical waste, and it is not ending up in a landfill where people can be affected/infected, where it will sit for many years to come as it is not biodegradable, and possibly end up in the hands of people looking for used needles to further their drug usage. I urge anyone who needs help with this matter to look into this company and ask your medical insurance company to do the same.

Busy Busy Busy

2009-02-14T15:50:00.002-06:00

I started WORKING this past week. I have not worked for a paycheck in 7 years......since I had our oldest daughter. I was asked to train for a position to work from home part time and so I started that training this past week. I spent three days in the office training and learned a ton of new systems to do the job. I was beat at the end of the week. I spent the day today in bed catching up on some zzzz's and slept through church (which I did not want to do) but I slept until 2 pm so I guess I needed the rest. I cleaned my house all day yesterday as it needed the attention - it was a mess - Happy Valentine's Day :) ! I am so out of the habit of working, cleaning, running the kids around, and doing everything else.......hats off to everyone who does it daily! I keep telling my friend who fosters 4 babies (who are all medically fragile and constantly at the doctors or in therapy), has 2 teenagers and homeschools, that she is superwoman - and I am serious about that!! God Bless Her!! I have another busy week ahead and know it will be a good one again - my best friend will be in town and I am so excited to see her! I cannot wait!

A busy schedule?? 8 months ago it would have been impossible!

2009-02-02T18:13:00.007-06:00

So here I am about to start working from home....a real job, not stuffing envelopes.....or something hinkey like that. I will be working a schedule of my own but still a real job. I begin training on Monday for that and we will go from there. I am a little nervous, but I know it will be all right! My mom will be keeping the kids for a few days during the week while I do the training, so the house will be pretty quiet in the evenings! Suzie (the dog) with not know what to do.

I will also still be homeschooling the girls, and have been working on getting a connection going at church for our homeschoolers there. I will be launching something in April and I pray it is something that really takes off and we can grow in the church from there. I will still be volunteering at our church like I have been, or maybe a little more within the Early Childhood as we grow into our new building over the next few months.

I am trying to get more involved in Pastoral Care, We had dinner last night with the Pastoral Care pastor and his wife and daughter from our church tonight. They are such a nice family, I am looking forward to getting to know them better! This is a ministry I have had a heart for since I lost my brother in 2005 and did not have the support of the church I was a part of at the time.I think great things can happen, and I look forward to working with Larry in the future!

I could possibly also be doing some music with my hubby who is going to be leading up the new music ministry for the Early Childhood at our church. There are loads of things going on in the house of Ballard at the moment. We are still in the process of learning all about cakes too. Ken has been making at least one every week....honing the skills. I research the recipes and have become the official tester....not a bad job, just can't say I eat much else.

I have been dealing with some nasty migraines this past week. I had been feeling really good, and no serious symptoms other than a random tingle in my face ever once in a while, until the past week. I have had 3 full days with full on Migraines that meds are hardly touching. I think I will be calling the neuro and see what she thinks. I do not like these feelings, and most meds are not doing the job to stop them or keep them away so something is going on.....we will see I guess.

So, I have become quite the busy lady here lately.....and I am just glad to be blessed and able to do it all!

Frisco to Ft. Worth 2009

2009-02-02T13:15:00.002-06:00

My husband is so freaking awesome!!

Check this out....

http://tinyurl.com/cr3ohh

What is Peace?

2009-01-26T22:21:00.003-06:00

I do not know that I truly know what peace is....I sat in a discussion at a homeschool meeting tonight on this and I really felt God talking to me. Actually the topic was on peacemaking or making peacemakers (within your children) in your home....Going to scripture, James 3:13-18 13Who is wise and understanding among you? Let him show it by his good life, by deeds done in the humility that comes from wisdom. 14But if you harbor bitter envy and selfish ambition in your hearts, do not boast about it or deny the truth. 15Such "wisdom" does not come down from heaven but is earthly, unspiritual, of the devil. 16For where you have envy and selfish ambition, there you find disorder and every evil practice.
17But the wisdom that comes from heaven is first of all pure; then peace-loving, considerate, submissive, full of mercy and good fruit, impartial and sincere. 18Peacemakers who sow in peace raise a harvest of righteousness. To me this meant you first need to have peace within.....it has to come from a steadfast faith in Him and through obedience in Him and to His word. Romans 5 speaks of this and it is overwhelming in such a beautiful way. I was in tears on the way home tonight just thinking of how Good God is! I have been praying for Him to do work in me and through me and I feel it happening - it is very powerful. I see it happening around me, and I am awe-struck. I cannot say I know how to process it all, but I am trying. I know I have to learn to not be easily offended - to really live and show the fruits of the Spirit (Gal. 5:22). I need to be more Godly, more Christlike. I want this, I pray for this, I need this. Pray for me, will you?

I am a music driven person, scripture resonates through song with me, and there is so much wonderful worship music out there today that speaks to me.....one of the scriptures mentioned tonight talking about peace was Hebrews 11 which makes me think of the song by Jeremy Camp, Walk By Faith. It is one of my favorite snip-its from the bible, for we walk by faith...faith in the Lord, for we cannot see Him, but we believe He is there! This has been my foundation in Christ as I am sure it is most Christians, it's just close to home in that verse if that makes any sense. I think one verse that really spoke to me tonight is Hebrews 12:14 - 14Make every effort to live in peace with all men and to be holy; without holiness no one will see the Lord. 15See to it that no one misses the grace of God and that no bitter root grows up to cause trouble and defile many. I want to have peace like God wants us to know and have. I don't want to live in strife and struggle with my kids or my spouse or my daily life. I want God's peace and will for my life.I want to show God's love to people and I know I need to start with forgiveness and love. I am praying for all of these things and it may take a life time, but I am working on it and I know God is working on me!

Why yes, ..............Size Does Matter!!

2009-01-20T23:07:00.006-06:00

Recently Betaseron changed the gauge needle it used for the injection I have to take every other day. The size became smaller and more like a needle that diabetics use when giving multiple shots daily. It is a very small and short needle and really is much different than the one in the old Beta set up. I used the first box from the shipment of the new needles as I was excited to check them out, and I still had one box left from the old sized needles. Last week I decided I needed to go ahead and start using the old box of needles to get them used up and out of the way before they expired and so forth. I will be glad when those needles are gone. You can see and feel the difference when giving the shot as well as see and feel the marks left after the shot. I am so ready to get through these needles so I can go back on the smaller gauged needles. I personally think that size does matter when it come to dealing with certain things, like needles, diamonds, and winning lottery tickets!! I tend to bruise easy and with the larger needle, I end up with a huge and somewhat painful reddish purple welt that lasts sometimes up to two weeks. I hardly notice the marks left from the new sized needles, a little pinkish, but not painful and no real bruising to speak of like the ones previously mentioned. It is a much appreciated improvement!! Thanks Betaseron!

Complete Book Review Coming

2009-01-18T14:24:00.003-06:00

I am always interested in the different ways people have of dealing with chronic lyme as both my husband and I were diagnosed back in 2004-2005. Last week I was approached through my blog by a fellow Lymie (Bryan Rosner) whom I have come across on You Tube and over the net many places over the past couple of years about reading his newest Lyme book. I told him I would read it and review it on my blogsite once I was done. I am giving it a little "preview" now I guess. The book is not only about medical treatment, but also alternative therapies and the combination of the two. I have started looking it over and it is an interesting format for the reader, although I have not gotten into the meat of it yet, I identify with his experiences with searching for treatment and dealing with doctors who are not knowledgable about Lyme Disease. I will add more as I get further into the book so check back if you want more info. If you are interested in looking into this book for yourself, it is called "The Top 10 Lyme Disease Treatments" by Bryan Rosner and you can find it here : www.defeatlyme.com.

Blogging here lately....(and timing)

2009-01-11T13:11:00.005-06:00

has happened, but then not happened. I have blogged, but it has not been published. I start to blog about something and then either get sidetracked or the thought flees my mind (imagine that) and I never get back around to finishing that particular post. I have 5 or so old blog posts sitting in the edit section waiting for me to come back and finish them, and I have tried a couple times on a couple different ones, but it seems the meaning (or time) has been lost since I did not get it done right when I was thinking about it. I guess this is all leading to timing. We all having issues with it....I have punctuality issues. I like to be on time, well actually early for things. Early is on-time, On-time is late, and late well, we all know late is unacceptable although sometimes unavoidable (especially when we have kids). I have friends that tease us because we are usually at lease 15 minutes early to everything, and we are almost always, ok we are always the first people to show up for anything. Even when I try to be late for the sake of not being the uncomfortable first person to show up to something, I am still the first person there. Go figure?!?!

I wonder how much of this is intentional as part of God's plan? I know he has a plan for everyone right? And there are reasons for the way things turn out right? And.....it all has to be part of the larger scheme of things. I know sometimes being in the "wrong place at the wrong time" gets people in trouble often, but it has also helped people being in the "right place and the right time". I was blessed today and able to be there for someone in a rough time of there life and felt (still feel) awesome in just being able to pray for them and with them. I am not normally serving in church during this time and was in the "right place at the right time" today, a door opened (both figuratively and literally) and I was able to minister to someone and just love them. I hope I have made a new friend as well, because I did not really know this person (other than in passing before) but I want to get to know them even more so now!

Been reading....

2008-12-27T21:48:00.002-06:00

a few books over the Christmas holidays. Stephen Baldwin is quite a good author and has some great views on Christianity and spreading the Word to the youth of today. I enjoyed reading his book "The Unusual Suspect" which is all about his coming to Christ and his current ministry as well as his beliefs and moreover, his opinions on the current state of America's youth when dealing with ministry. I am in agreement with a lot of what he said in this book! I would suggest reading it to just about anyone.....I was not even really a fan of his prior to this, I just saw him on Huckabee one night and decided I would pick his books up. I also read his first novel, "The Death and Life of Gabriel Phillips" which was a murder/mystery/faith story. I was sucked in and did not want to put it down. I read both books in 2-3 days...and wish I had more to read. I think I will follow him and read more of his books if he continues writing.

Check out his ministry http://www.livinit.com/index.php.

Life is Good

2008-12-22T12:32:00.002-06:00

It really is....I have a wonderful family, some great friends, a nice home, and God in my life. What else do I need? Nothing......I may WANT, but I know I NEED nothing. I am well provided for by the Lord, and my dear husband. My kids give me plenty to keep up with, and my health has greatly improved since the first of the year - so that is definitely a blessing that was the work of God! I am blessed by many people in my life and try to be a blessing to others when I can.

I hope everyone has Merry Christmas and will be blessed in the New Year - God Bless!

So no chase.....unless the neuro thinks I need to....

2008-12-17T00:40:00.002-06:00

I saw my PCP today and he looked over my blood work (some going back to 2004) and did not think my low white blood cell count was anything to be too concerned about. He said that all of my other counts were at good ratios and nothing was out of whack in comparison - so he did not want to start messing around with anything. He pulled out his 4 inch think book of medical info and and showed me a study where Betaseron (my MS drug) lowered patients white blood cell counts by 15% or so. I could not find that info on the web before the appointment but I wondered if it was the meds doing it - looks like it could be. He checked me out for signs of any other issues like lymph nodes being swollen and talked about the other meds I am taking, but did not seem to think anything else would be the culprit. He told me the neuro probably would not want to go beyond this, but if she did want to send me to a hematologist, he could only see the next step being a bone marrow test. No thank you.....no signs of anything else at this point right now, no need for bone marrow testing for me. He said it would just be more pain for me than worth in his opinion. I have to agree......now is it Christmas yet??

A New Chase?

2008-12-15T10:46:00.002-06:00

So the blood work I spoke of in my last post came back Ok for the most part. My white blood cell count is low....it has been for a few months now, since August. The neuro wants me to follow up with the PCP so I will be going in to see him tomorrow. Low white blood cells can mean a host of things and some of them are not to pleasant to think about so I will just wait and see what happens tomorrow I guess. I have looked into some of my meds to see if that could be a cause and so far I have not found any. MS is a possible cause.....no one really knows for sure. Sometimes I feel like the medical issues will never stop. I guess that is the life of immunodeficiency.....how did this happen? I have a friend with a young baby who was born with serious ID problems and I feel so bad for him as I know what I have gone through recently, and I cannot imagine growing up with constant illness, and having to worry about everything you come in contact with, or everyone. I pray he grows out of it and can have a normal life and can play hard with all the other kids with no worries one day!! As for me, another day will bring more tests I am sure, more questions and more stuff to ponder and investigate as I do. Sometimes the internet is my friend, and sometimes it is a scary place!! :)

Neuro Follow Up

2008-12-11T19:04:00.003-06:00

I had a follow up with the neuro today and all seems to be good. She was pleased with my status and how I seemed to be doing on the meds so far. I do not have to go back to see her for 3 months now unless something comes up between now and then. She did send me for blood work so I will see how that is in a few days, but I think it will be ok. I have been sick this past week with bronchitis, sinusitis and an ear infection so I am loaded with more antibiotics. I have been on the go most of the week though and I am feeling run down today. I am pretty tired so i think we are going to start our Christmas vacation from school and start relaxing and getting ready for our trip to the mountains. I am so ready to go to the cabin in Arkansas!

Feeling Really Good

2008-12-01T11:19:00.002-06:00

I have been feeling really good lately. I saw the LLMD last week, and I have lost some of the weight I put on with the Lyrica....about 6 pounds since last month when I was in there to see him....not bad with Halloween in there and the hubby making cakes every other day around here. (he is into cake decorating now so we are the testers). I have had more energy, and been able to scale back on the meds which I am all for. I pretty much stopped taking all the supplements....I was not really seeing much of a difference with them, and now without them either. I am now only on my shot for MS, my Lipitor for cholesterol, my happy pills 'cuz no one wants me without those, Topamax for the headaches, and a sleeping pill on occasion. I switched taking my shot to morning time instead of before bed time as I was having super bad horrible insomnia on those shot nights.....anxiety I guess. Now it is like a little extra juice for running around on those days I take it in the am. Most of my symptoms from the Lyme have gone away, as well as most of the things I was experiencing from the MS (which many can overlap). I still have some tingling and numbness in the legs (mainly the left one) when I overdo it, sometimes I will have the odd tingling in the lower half of the face at weird and random times, headaches pop in and out (but are mostly under control with meds), I have not had any weakness issues like falling or standing problems in a while (thank God) and for the most part I have had a pretty high energy level - much more than I had back over the summer for sure! All in all, I have seen a big improvement in the past few months which has been a blessing. Hopefully I will stay at this level or continue to improve....I know it can go the other way, but I just try not to think about the possibilities or what ifs.....I know God will take care of it all no matter which way it goes!

Aunt "Mc Margaret"

2008-11-21T23:45:00.004-06:00

Death, It is inevitable right? We all hope it comes in our old age after many years of a wonderful life.....or something along those lines. We lost a family member this week, my hubby's Great Great Aunt Margaret.....who was 95 I think. She was such a neat lady and I just loved to talk to her....although I must confess we have been a bit wrapped up in our own lives for the past couple of years while she has been living in a nursing home. She will be laid to rest tomorrow and Ken will be overseeing the service in her honor. He is becoming versed at doing these type of things for the family....it all started with playing trumpet for Poppa's funeral, then he did the service for Grandmother's funeral in march, and now Aunt Margaret's. I am saddened but I think because the last memories of her were funny comments she always made, it is so much easier to handle. She lived a long life, most of it was good I believe....albeit tough, I think she was a happy woman. She was loving and kind, and funny, witty and sharp!! She was a vibrant lady until she went to the nursing home.....and I do not know her from that point, sadly. For this, I will remain sad, but I know she is on to meet our Lord, and she had many people on this earth who loved and adored her! Farewell sweet lady!

PLM

2008-11-12T11:30:00.002-06:00

If you find my blog off of PLM, please leave me a comment and let me know.

I do not try to give any direction or ways to change your life or cures for MS, or Lyme. I write about my life. I gripe, I complain, I cry, I pray, probably complain some more and maybe tell a funny (well funny to me) story here and there. This is my life....it is not always upbeat, it is not always positive or always PC, it is what it is when I put it down on the blog. Take it or leave it, I am a pretty straight forward person. I believe in God, and that there is a purpose for all of our lives. I am blessed to have a handful of really good friends and I consider them family. Once you make that status, it is hard to get out! :)

Prayers

2008-11-07T11:54:00.005-06:00

With the election over, many people have switched modes; Prayers now being for the new 'president elect'. As we go through personal transitions in life we often seek prayer or support in these transitions from friends and other people we know, of like minds. Often we lean on church members or small groups, or close friends for strength in tough times, but who do you lean on when you do not have those things in your life? I cannot imagine not having some one to turn to throughout my life during the rough times! Last night I heard of a woman who had learned to trust again recently from one of my best friends just ministering to her child and being there to serve when she needed that in her life. This brought me to tears.....mainly because I know how giving my friend is and that this is from her heart. I am brought to tears as I type just thinking about this again as I know she will probably be moving to another state in the next few months and that saddens me. I love her dearly, she is my sister as well as my friend and I will be lost with our her! I ask you pray for her because she needs this move for her family and it will be a blessing for them but pray for me as I will be seperated from a big piece of my life - my best friend! I love you my dear sweet sisterfriend Ginger (oh yeah, and my manfriend/brother Mark)! :)

Blogging, Voting, and Headaches

2008-11-04T20:29:00.004-06:00

Oh so here is my conversation in the car with the 6 year old the other day.....

6 YO: so mommy who are you going to vote for?
me: well, I still am not sure, who do you think I should vote for?
6 YO: I think you should vote for John Mc Cain, Barack Obama should not be president.
me: So why should Barack not be president?
6 YO: Well, he will "make" girls marry girls, and boys marry boys.
me: oh, well, not exactly.......but I think I am voting for John Mc Cain for sure. I went on to find out where she got this info and it was a rather funny story but probably only to me.

She did not really want any other details or questions answered about this situation though. (Good as I am not ready for that detailed talk yet) Days later she did say that if she married a girl she would have lots of kids, and I asked how that was and she said well, if 2 girls were married, both would have babies when they were old enough and they would have lots of babies. Sex, obviously not discussed yet....she (innocently) thinks that kissing begets babies......well not exactly I said. I told her God's plan was for a man and woman to be married and then they would have babies after they were married. (no further questions here either)

Anyway, I am just sitting here listening to the election results, and my headache is intensifying so I thought I would blog a little...... :)

Weakened Immune Systems

2008-11-03T11:20:00.002-06:00

I think having a weakened immune system is one of the most unfun things to deal with, especially when you have kids, or work with kids. I had bronchitis 3 times in the first 6 months of the year, which hung on the last time for more than 2 months. It was not fun!! I have been pretty lucky since, not to catch anything too serious considering how much I am around kids......and loving on babies at church. I feel like I am getting sick now though. My 6 year old had a viral infection last week and ran a fever for a few days. I made sure not to share anything with her for the largest part of it, but I think I thought she was really throught it all...and got careless. Hopefully I am just run down as we had a very busy week and weekend running around to parties and doing yard work. It does not help that I did a number on my back just bending over wrong to bathe the kids and then aggravated itmore doing the yard work. Som he I sit, trying to get some things done that can't wait another day and trying NOT to be sick, and trying to nurse the back as well. But the parties were fun, and I have a flower bed of pretty flowers...and part of the yard around the pool is done........

Birthday fun!

2008-10-30T17:27:00.002-05:00

Today is my 34th birthday. I had a Halloween party with 18 kids and 7 or so other moms there and we had fun...the kids played a few games, ate way to much junk and we did a few crafty things. My wonderful friend Ginger baked me a cake that was awesome - thanks Ging!! All in all a nice day. I am about to go to dinner on a date with my hubby to Jinbeh and Nanna Betty is watching the kiddos for us - thanks Betty!! She is so awesome!!

I have been experiencing a new weird little symptom for some strange reason......my nose and top lip started tingling like when you come out of the dentist and the numbness is going away. Well, this has happened a few times on and off then goes away....today it has "spread" and it pretty much the whole inner part of my face including my apples of my cheeks, nose, upper/lower lip, inner eye/bridge of nose and the mid forehead. Weird stuff I tell ya!! We will see how long this one stays around!

Been a few weeks....

2008-10-23T17:16:00.005-05:00

since I last posted. I have been taking Topamax for my headaches and it seems to be working fine. I also remember the name of that other drug, Treximet, but I do not think it is for me. I took it once I felt a headache coming on and it seemed to make it more painful! That was not a fun day!! We were at my nephew's birthday party and had toleave early as I was just no good that day - probably should have stayed home but the kids were sooooo excited as it was a costume party and they got to wear their Halloween costumes for the first time. I should just go back to Migrin/Midrin, as it was cheap and I know it worked! Back to Topamax, one of the wonderful side effects of it is that some people may experience that the taste of carbonated beverages tend to go flat. I love my Diet Coke....it was like my coffee!! It now tastes like Diet Pepsi with lime, which to me has always tasted flat. So now to get some caffeine in me, I have gone back to a little morning coffee with some Splenda and Fat Free flavored creamer. I guess this will have to do since I would rather not have the headaches all the time. Unfortunately it also has the same effect on frost adult carbonated beverages as well. Go figure right????

It is gearing up for our busy time of year; from Thanksgiving on we often break from our normal school schedule and do field trips and fun stuff until the first of the year. It seems this is all starting a little earlier this year.....I am going to have to play it by ear though. I actually have a full cirriculum this year where as is the past I have always kind of done mmy own hodge podge thing. The next few weeks are really busy with parties and loaads of running around to do!! I love the fall!

The pool construction MIGHT come to an end this week. We began this adventure in August, yes, August; when we thought we would be able to swim in a pool for a while yet, since we live in Texas (right? nope this year we will actually have a Fall and no Indian Summer)......well, mishap after misunderstanding, after gaff, after @#!$ (enter explicative here) another......and mismanagement of this whole project by said pool company and we are still waiting on this whole process to be finished. Today the decking was torn out to be replaced as the first round was done incorrectly and poorly (I guess that was assumed huh?) so tomorrow they will be out to repour the concrete and we will see how that goes. I really wished I spoke and understood more Spanish. So much for those 6 years in elementary school I had to be in Spanish classes.

MEDICAL UPDATE

2008-10-10T17:11:00.003-05:00

Well, I had the breathing test done and the docs all say I have better lung function then most of my peers. Who the heck knows what is causing the wheeze, but I am not going to worry about it any more. My GP said he just did not see where I could be classified as having asthma and so he said to just let him know if it continues to bother me and we would go from there.

Also, I went to the neuro and the last MRI was very good!! Praise God - no new lesions and shrinkage (yeah, shrinkage) of the old ones.......which means the Betaseron shot is doing what it needs to be doing!! She still wants me to consider doing IVIG therapy but I do not think it is covered on the insurance. I asked her to look into it, but for right now, I thought I would just keep things the way they are......seems what we are doing is working. I will get my own copy of the MRI as I did not actually see it, she had compared it to the old ones I had though and said it looked better. I want to see it myself though.....I have learned how to read the reports and MRI's as well!! They did claim one lesion was totally gone, but I do not think that it could be, as it is what causes the L'hermittes sign, and I still have that......so I think that radiologists are all different and the reading of an MRI can be subjective......especially id they did not see the earlier ones.

All in all, this is all great news!! I have been feeling pretty good the past couple months. My biggest problem is fatigue and headaches now. She is putting me on Topomax for the headaches since I have gained so much weight from the Lyrica (or the defunct thyroid or the sedentary life I lead, or....who knows - 16 lbs. in 2 months is too much!!). She also gave me another sample of something to help when I get the full on Migraines.......can't remember the name of that though.

Just Wheezy........

2008-10-03T12:49:00.002-05:00

I had to go to the GP today and have him take a listen to my lungs. I have had a wheezy crackle for months - thought it was left over from 3 bouts of bronchitis earlier in the year. I had to go get an Xray taken and drop it back off at the office (just down the hall) and I am waiting to hear back from the doc. He said he was perplexed since I do not have any coughing going on, and do not have asthma(not currently diagnosed). He said he will look at the Xray and decide from there if I need to go for another test called a Spirometry test. Guess I will know more later on this.

Not feeling so good......

2008-09-30T15:11:00.002-05:00

since Sunday. It is that time of year and my feeble immune system is just hit hard with temperature changes and handling loads of babies in the nursery at church. I love "loving" on those little ones, since I am NOT having any more, but then I tend to pay for it later! I have been running fever since Sunday afternoon and felt like I was getting a full blown respiratory infection. So far, the fever is lingering but I have not really gotten "sick". My system is fighting something off....today I have felt kinda puny all day and feel a migraine setting in......echhhh!

The pool is finally moving along. The guys are here today and the tile edging is complete. They will start the coping (top edge of the pool) soon. The electrician is finishing up his part in hooking up the lighting and the pool equipment. Tomorrow the decking people should be here to get my patio done!! I am excited about this as I have had this house for 5 years and never had real patio furniture until last month (bought on clearance!!) and it has been sitting in the garage all this time begging to be used on some of these cool beautiful nights!! I cannot wait!! I could possibly be sitting out under the stars on Friday or Saturday - THIS WEEK!!!

Pray for my sweet friends, Tana & Lori as they are dealing with sick kids and very worn out and down!! Pray for peace, strength and rest for the, plus the improvment of the health of the kiddos! Pray for my best friends as they are still looking for a job and direction in which the family should go....(selfishly) I hope no where!!

Update on LLMD visit

2008-09-26T18:38:00.002-05:00

Well, today went well. I have been feeling pretty good here lately so there was that to report to him. We looked at my health survey and thought it looked pretty decent, better than the last time I was in his office. He is happy with the results of my Neuropsych eval and thought that was good to have. We are going to check my CD 57 levels to determine on-going antibiotic treatment. He said if the levels are really good and up there (in the 100-200 range) that he will let me stop all treatment. This is great news!! I have to say that I think most of my symptoms have been MS related lately and not really LD (or coinfections). I have put on 13 lbs since I was in there last and he thinks it is Lyrica causing this as I started it about 2 months ago as well. He wants me to talk to the neuro about switching to something else as it has many side effects (I was not aware of) and that might take care of the other small issues I have been dealing with. I do have a wheeze that I have been dealing with since February, and I thought it was from the 3 bouts of bronchitis I had in 2 months but he thinks it is reactionary to possible allergies. I do notice it is aggrevated on heavy ozone days or when I am outside alot running errands or in and out of the car. I had to make an appointment with the GP to see him next week and get this looked into.

All in all, today was a good appoinment. I did get rather sick this afternoon - think it was a full blown migraine that came on suddenly and made me so sick to my stomach and head pounding, eyes throbbing......not fun. I came home and crawled into bed from 2-5pm and still feel a little "off".

Appointments

2008-09-26T08:21:00.003-05:00

I have an appointment today with the LLMD. I do not know which direction we will be going in next. I have been experiencing less symptoms in the past month or two which has been nice. I have upped my antidepressant (with his approval) as I felt I needed it - we have been adjusting the dosage for a while. I am sure I will have more blood work done today as it is time for a liver function check and Thyroid level test. I feel like I may need to up the thyroid meds as I do not feel there is much going on with that.....guess the blood work will tell. Pray for me as I feel a bit like I am on an emotional roller coaster this week.

I have my follow up with the neuro on Oct. 9th, I am looking forward to that visit as I have not heard anything about the last round of MRI's yet. Hopefully that means something good.

The pool is moving along. We now have a big concrete hole in the backyard and they may start prettying it up today or over the weekend. Just in time for a cold front if I heard the weather man right last night.......at least I will be able to sit out and enjoy the patio some before our small but usually icy winter gets here

Pray for Ken (hubby) if you feel led, for peace and patience. These financial issues in the banks are really worrying him as he is the sole provider for us. Pray for Tana and family as they begin planning for a BIG adjustment in bringing home a very sick baby. Pray for my best friend's family as they face a big job decision and possible move - (I hope they can stay here, but pray for what is best for their family).

Living with.....

2008-09-21T00:33:00.002-05:00

a disease is so surreal at times. I have moments of clarity then I have moments of sheer fatigue that I (almost) cannot function through. Luckily here lately I have been feeling pretty good - thank GOD!! I just (yesterday) read about a little girl from my home town that is the daughter of someone I went to school with and has passed away. She was 11 years old and has been fighting cancer since she was born practically. I cannot imagine what her family is feeling or going through. I hurt for them, but know that I cannot console them in anyway, but I will say a prayer for them. I have mentioned before about the friends I have that are dealing with sick children - again, I ask you to pray for them, even if you do not know their names. God knows and will hear you if you ask him to!!

I will be saying an extra prayer for all of my friends, and their sick children tonight - and for the newly wed couple Ken married today, Emily & Houston. May the Lord be with you all!!

The pool process......

2008-09-19T00:03:00.002-05:00

If you care to check it out, Ken set up a family site and it photo blogging the process.

http://theballardlife.shutterfly.com/

It is a very interesting process to watch step by step! I am totally amazed at what a skilled gunite person can do.......just look at the pictures!

Anyway, If you are reading this, please say a prayer for my friends Lori and Todd, whose son is extremely ill and the family is seperated due to jobs and specialist locations. We need healing for Caed, and strength peace and rest for the family as they deal with a life long medical situation and horrible thing for a 5 year old to go though!!

I did not realize it was 9/11......

2008-09-11T23:05:00.002-05:00

I saw flags at half mast and wondered if I missed a passing on of some political person. Then I got home and saw something on yahoo. What a sad day for loads of people today is....bittersweet for me as that was the day I was confirmed to be pregnant with my first baby - who is now 6. Wow how time flies!! God Bless all those touched by 9/11.

As far as my health, not much going on here lately. I have felt pretty normal with a few bouts of extreme fatigue kicking in every once in a while. Nothing a little (or few hour) nap won't resolve usually! :) I still have not heard anything on the last MRI's from a few weeks ago. I am assuming no news is good news.

We have been waiting on the weather to have our pool construction started. The hurricane season is not conducive to pool building. And I only thought that I would be affected if I were on a cruise out in the ocean since we do not live seaside......go figure. Pray for everyone that is!!

If you read this, please pray for my friend Lori as she has a very sick little boy Caed, and they have had to "relocate" to Nebraska for a while to receive some very specialized medical care at a facility in Omaha I believe it is........

Pray for my best friend as they are dealing with job-loss and the uncertainty that come swith that.....

Pray for Tana and her sick baby Kensley......I only know of then thru Lori from above, via the internet....

So much going on.......

2008-08-31T19:22:00.002-05:00

around here and none of it has been related to my health - yea!!. (well, 2 days of MRI's this past week, but I do not know anything on those yet.) We are in the process of building a pool in the backyard. We closed on the loan on Friday and we are waiting out Gustav (the hurricane) to see what the weather is going to be like so they can start the actual construction. We are also getting ready(for Ken) to ceramic tile my master bathroom, and get new carpet in the living room and in my master bedroom. The carpet will probably wait until the pool is complete since there will be loads of dirt and mud in the back for a while. Once the pool is done, and we get the backyard settled down, I guess we will get the carpet changed out.

Been feeling.....

2008-08-26T00:15:00.003-05:00

pretty normal here lately. I have a few symptoms that are going to be with me forever I guess. Nothing really painful, just annoying more than any thing. My hands and feet go in and out of varying degrees of numb or tingling. It just depends on how much I do. Also, I can be just fine one minute and fatigued the next and to the point where if I do not sleep immediately, I could fall straight over. I have been able to go a little more and longer without worrying about needing a place to crash out for a while. I am just dealing with the cards as they are dealt. I have been dealing with a messed up back for several weeks now and it is starting to get better.

No Rhyme or Reason

2008-08-17T22:51:00.005-05:00

I have learned that MS has no rhyme or reason in the short time it has been since I was diagnosed. I have had more good days lately which I thank God for the blessing, but when it is a bad day, it can be really nasty. Sometimes it is just a fatigue thing, which is hard to explain to someone who has never experienced this type of fatigue. I have been an insomniac for many years and prayed for sleep to come, but this is so much more then that kind of tired. I have days (like today) when I can't not sleep. It comes to a point where it feels like I can no longer hold my eyes open and my head has suddenly gained 10 pounds. It is so hard to explain to a 6 year old why you sleep so much. If I only had a bit of their energy, it would make the hard days soooo much easier!! I feel bad some days because I have no energy to do simple things with the kids like we used to - it hurts to have to say "no" or "maybe" all the time. I know I am doing better than I was 2 months ago, again, Thanks to God!! I would love to go into a total "remission" (I am considered to have aggressive relapsing remitting MS) and not have a single symptom for a while. I do not know if I would recognize what feeling like normal again would be.......scary thought as that is!!

Sickness......

2008-08-14T23:42:00.002-05:00

Is it really everywhere?? I mean I know so many people who are sick with a major life altering disease. Is it because I am one of those people that I notice it more now? Is it like when you get a new red car that you notice all the red cars around?? I do not know, but I think God placed these people I know in my life on some level not only for myself in a manner of support, but also to help teach me things I have not yet learned.

I have an old friend who is FIGHTING colon cancer and has been for years now. She was only 30 when she was diagnosed. It has spread some and she is still fighting it. She has 3 kids and has been single and raising them for a long time. She is so strong and facing yet another of a multitide of chemo and experimental treatments to deal with this bout - her strength is amazing!!

I have another friend who has been dealing with a very sick child for the past 5 months and has not even been to her own home for more than a week in that time. She has shown me such grace and faith in our Lord through her family's ordeal. She is a strong Godly woman, and I can't wait to see her and hug her!!

I also have a fellow church member who is just winding up her own chemo treatments for breast cancer. She has faithfully blogged to keep people up to date (and often smiling and laughing) on her goings on. She has had such candor and strength and a good sense of humor through it all. She is determined to FIGHT and has such a beautiful and wonderful group of friends and family by her side. She is truly blessed!

Sometimes I am overwhelmed by the things I hear about and the people I know dealing with illness in their lives. Now that I have been diagnosed with this disease (and for like many others there is no cure....) I know I am blessed in many ways though! I have learned alot from the people I know who are sick, as well as those who have sick family members. My faith in the Lord is as strong as ever, I have a wonderful family and blessed with some really good friends. Please do as I do if you are reading this, and say a prayer for the ones mentioned above, and for the many people out there who do not have the support of family and friends like we are blessed to have!!

Neuro Visit

2008-08-14T20:22:00.003-05:00

Well today I saw the neuro today and she had all my test results. The EEG, Evoked Potentials, MRA and Neuropsychology tests all came back with good results. I was even cleared by the Psychologist - I am NOT CRAZY!! :)

I will have to go in the next week and get another MRI series. This one will be from the head to the lower back. She also wants me to have IVIg infusions. I am not sure about this though. I am kinda freaked out by it!! I looked on my insurance and I do not think it is covered anyway, so that is also a factor......it is really expensive to have it done. You go for 1-2 weeks of daily infusions then you go 2 times a month after that.

Last week I saw the LLMD and he changed my meds, and I no longer take Doxy and Ceftin for Lyme. We are working on the other co-infections now with Flagyl and Azithromiacin. I guess we will see how that goes in a few weeks.

Daily Prayer Sent From a Friend

2008-08-13T23:33:00.000-05:00

For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do. Ephesians 2:10

Lord, thank you for creating me on purpose with a purpose. And I thank you that not only does my life have purpose, but you have created purpose for each of my days as well. Please focus my affections on you, on the people you place before me and on the good works that you have prepared in advance for me to do because I don't want to miss out on you today! In Jesus Name, Amen.

No news is Good News Right?

2008-08-11T00:57:00.002-05:00

No news around here....waiting to go this week for my final baseline tests, neuropsych evaluation is on Wednesday and I have my 6 week follow up with the neurologist.

Oh, I did have a strange reaction to my Betaseron shot Friday night. I usually take advil with it and a muscle relaxer, but for got the advil. About an hour later I started feeling like my hands and arms (to the elbow) were contracting or something. It was a very painful couple of hours. I finally took some more meds, and laid with a heating pad over my hand and arms for about 30 minutes or so. Ihave never had this type raction before. I did not forget to take advil tonight before my shot!! My hands still ache some and have been a little swollen since then, but most of the pain went away. Thank goodness!

Headaches

2008-08-05T20:45:00.002-05:00

Since Sunday I have been experiencing these weird headaches. I am getting a sharp pain either behind my eyes or in the back of my head and it feels like an ice pick is being shoved through to my eyeballs (graphic right?). If I move my eyes in any direction, my right eye is really feeling a strain like a muscle pull, but severely intense. I have read about Optic Neuritis which is an MS problem some people experience and I do not know if this is what I have now or just some random pains. I go see the neuro next Wednesday and hopefully will know more about this before then.....I left a message today and have not heard back yet.

What a day!!

2008-08-02T23:56:00.002-05:00

I had an awesome day Saturday. I think it was the most normal (feeling) day I have had in a long time!! I got to catch up with some old friends and celebrate my oldest friend's parents' 40th anniversary. What a blessing to see people I have not seen in YEARS and to feel like it was just yesterday in many ways. I loved seeing my friend's siblings all grown up(which is weird in itself), and her parents who have always meant a lot to me - so sweet and caring!! I met her new love and re-met all of her boys who are also so grown up now - like a flashback but with new details if that makes any sense!

Too Many Pills!!

2008-08-01T12:56:00.001-05:00

A friend shared this poem on a website I frequent.....I do not know who wrote it but it is great!!

Too Many Pills
A row of bottles on my shelf,
Caused me to analyze myself.
One yellow pill I have to pop,
Goes to my heart so it won't stop.
A little white one that I take,
Goes to my hands so they won't shake.
The blue ones that I use a lot,
Tell me I'm happy when I'm not.
The purple pill goes to my brain,
Then tells me that I have no pain.
The capsules tell me not to wheeze,
Or cough or choke or even sneeze.
The red ones, smallest of them all,
Go to my blood so I won't fall.
The orange ones, very big and bright,
Prevent my leg cramps in the night.
Such an array of brilliant pills,
Helping to cure all kinds of ills.
But what I'd really like to know...........Is what tells each one where to go!

New Symptoms or side effects?

2008-08-01T00:16:00.002-05:00

I am up to full dosage on my shot I take every other day now. I had a shot tonight and did my usual stuff and I feel like I have literally been run over. I have a sudden onset migraine and my right side is having issues in the arm and hand, feeling like someone is pounding on them with a metal hammer, my right chest/rib cage feels like someone is slightly kicking it, and my right foot and leg are tensed up and throbbing, and both legs are really weak.

I coughed all day today. I went to do some errands and the heat and humidity gets me to hacking some and I STILL have congestion from the bronchitis I had in May. My throat is pretty raw and scratchy feeling tonight, and I have finally stopped the really bad coughing I was doing.

Guess I will be making a phone call in the AM if this is still going on to see about getting into the neuro earlier then the 14th.

What is in the Future?

2008-07-31T21:16:00.002-05:00

No one can really say....I mean this is a broad subject, right? I am looking into the near future and hope to see a pool in the backyard. Will it happen? Who knows??

Also, I am looking a few weeks down the road to the next neurologist visit and think she will want to have another set of MRI's done as I have fallen 2 times in the past month, but who knows if it will show anything new or better/different.

I try to remember that I need to live for today and enjoy it while I can, but in our short-sightedness, as humans, that can often be hard to do. God designed us knowing this, but also gave us a mond to be able to choose what to do with our time here on earth. I just pray He impresses his will on me enough that I do what he wants and in the end, that is all I can ask for....

Neuropsych Cognitive Evaluation

2008-07-22T15:10:00.002-05:00

The doctors finally got approval to do this through the insurance at the in-network price. He was talking to me and saying how much the insurance usually allows.....$1500-$1700 to pay for these tests.....YIKES, what the heck is my part going to end up being? I think this will be my last test until I have MRI's done again. Hopefully I can get this one done before the 14th when I go back to see the neuro.

EEG Complete

2008-07-21T15:30:00.002-05:00

I went and had the EEG done this morning. What a strange little test that is!! She hooked 23 electrodes up to my head after scrubbing the 23 spots with liquid sand paper. Then I had to lay on the bed and the test started. First she had me close my eyes and lay there for a minute, then she asked a couple of easy questions, then she flashed a strobe light at my eyes (while they are closed) for about 3 minutes. It was strange because you "see" red and green colors and some weird patterns caused by the strobing whinle you eyes are closed. Next she had me breathe rapidly to hyperventilate as she monitored my brain and heart. Then she has me relax for 10 minutes as it read the brain waves, aksed me a few simple questions again, and then the test was done. I will not know anything on this test until I go to the neuro on the 14th.

2 weeks and 2.....

2008-07-20T22:12:00.002-05:00

Falls for me. UGGGHHHHHHH - what is next????????

This time I was at my mom's house eating dinner (mom, hubby and stepdad sitting were there). I was getting up to go into the kitchen, and the left foot (I thought was going the right way) was not. Some how I tried to walk on the top side of my left foot or something like that and the right foot kept coming as I was standing up and the chair slide out from under me. The bar we were eating at caught me, thank goodness, or I would have been flat out on my face sprawed out on the kitchen floor!!

My legs seem to not be getting all the messages from above when I try to get out of chairs for some reason. I think my lower half has got a short in the wiring from the upper half.....this is getting frustrating. I think I may have broken my little toe on the left foot and bruised the rest of the foot.

Syringe Disposal

2008-07-20T11:53:00.002-05:00

Since I have been taking shots every other day, I have built up a collection of used needles. I have sharps containers like the have at doctor offices just smaller for the home. The nurse that came out to do my training told me that by Texas law, all I have to do is to duct tape the top of the container when it reaches the fill line and toss it in the trash. I still can't believe this.......I am having a hard time with the idea of doing this. First of all, these things are NOT biodegradeable and will be in this container FOREVER (unless it gets opened) second, I can't imagine there is no problem with people who are looking for needles to use......they would have a hayday at the dump since we can just toss them in the trash, thirdly, why can't a hospital, pharmacy or doctor office allow for drop off of these items to be disposed of the way they should be??? I just have issue with this on so many levels and do not know what I am going to do. I think I will make some calls myself this week and see what can be done about them.

Uneventful I guess

2008-07-19T11:05:00.002-05:00

is best to explain the past week. Nothing has really been going on here so nothing much to report. I go Monday to have an EEG done, where they are testing the brain waves to see damage done by the lesions on the brain. Guess more later......

More Tests Done

2008-07-15T20:46:00.003-05:00

Well, I went to Baylor Irving today and had the Evoked Potential tests.

The visual test is about 10 minutes long looking at a small TV screen with electrodes on the forehead, and a couple places on the back of the head. They scrub each spot with "liquid sandpaper" so the spot is good for connectivity. The you sit there and stare at a spot on the middle of the screen while a checkerboard pattern flashes back and forth. They are recording the brain waves to see how fast you transmit the signal.

The hearing test was about 10 minutes on each ear. You lay down and they put headphones on you after scrubbing more spots for electrodes. There is static in one ear while the other has a series of clicks, much like the sound you hear in an MRI (of you have had one). It plays on for the whole time and they record how you perceive the sounds. This is done on the other side as well.

The next two tests were somasensory where they test you from the wrists to the brain and the ankles to the brain. They put electrodes on each wrist and one on the forearm and stimulate the nerves. It makes the thumb twitch while the test goes on for about 10 minutes on each hand. They put some electrodes on each ankle and behind the knees, and at the base of the neck and on the back to see how the nerves transmit to the brain from the lower half of the body.

All in all it took about 1.5 hours. The tech said in normally took about 3 hours, but we just got it done!! I do not know how I did, the tech said I did wonderful, but I think that was in regards to the process as opposed to the actual tests. I probably will not know how the scores were until the 14th of August when I go to the neuro again.

Evoked what???

2008-07-14T12:51:00.003-05:00

Evoked potentials........the tests I will be having in the morning at the Baylor Hospital in Irving. Here is some info from Web MD:

Evoked potential test for multiple sclerosis

An evoked potential test measures the time it takes for nerves to respond to stimulation. The size of the response is also measured. Nerves from different areas of the body may be tested. Types of responses are:

Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.

Auditory brain stem evoked response or potential (ABER or ABEP), which is when hearing is stimulated by listening to a test tone.

Somatosensory evoked response or potential (SSER or SSEP), which is when the nerves of the arms and legs are stimulated by an electrical pulse.

Each type of response is recorded from brain waves by using electrodes taped to the head. The visual evoked response (VER) is the most commonly used evoked potential test in the diagnosis of multiple sclerosis (MS).

Conducting gel and electrodes are applied to the scalp. The location will depend on the type of response being recorded. For example, when VERs are recorded, the electrodes are applied to the rear (occipital region) of the scalp over the brain areas that register visual stimuli.
Stimuli are delivered:
For VER by a strobe light or a screen with a checkerboard pattern.
For ABER by clicking noises or a tone sent through earphones.
For SSER by an electrical pulse at the wrist or knee. This pulse is a mild electrical shock.
Responses from the electrodes are recorded. The time between the stimulation and the response is called the latency, which indicates the speed at which the nerves pass a signal.

Why It Is Done:
This test may be used when MS is suspected and a neurological examination alone does not provide enough evidence.
For a clear diagnosis of MS, the doctor has to find evidence that multiple parts of the central nervous system are affected. When there are symptoms clearly caused by MS lesions of the spine but no visual symptoms, the visual response may be tested anyway. Abnormal results in such cases mean that there are also areas of damage (MS lesions) on the brain.
Results
Findings of this test may include the following;
Normal
The time between the stimulation and the nerve's response is within the normal range.
Abnormal
Some people who are free from symptoms in the nerve area tested will still have abnormal responses in that area. Abnormal response times can also be associated with other neurological diseases or with damaged optic nerves and eyes.

My Meds.....

2008-07-11T22:41:00.005-05:00

This is a photo of the shot set up that I give myself every other day. It includes the vial of powder, the syringe and needle, and 2 alcohol pads. It is called Betaseron, and is considered a "Disease Modifying Drug". It is supposed to help with the progression of the MS lesions. I was told that in 1 year I should not seen any more lesions on MRI and a possible reduction of the existing ones if I respond to the medication.

This is a shot of my daily pills.

The ones on the left are the morning dose, and the ones on the right are the night time dose. There are a couple meds that are not in the shot as they are "as needed". I take 2 different antibiotics for Lyme, an antidepressant -(guess what for??), Synthroid for Hypothyroidism, Lipitor for high cholesterol, Grape Seed Extract, Magtabs for Magnesium, probiotics for digestive help, multi-vitamins, and as needed, a muscle relaxer and sleeping pill. I recently stopped taking 4 other supplements and have 1 prescription I am waiting on to be filled.

Medication/Insurance Costs

2008-07-09T16:15:00.003-05:00

Until you experience a trauma, injury, or major illness, I guess most people do not think of the ramifications of not having medical or prescription insurance. It is really amazing what insurance will cover and what they fight you on. Right now I am dealing with trying to get a nerve med that I have been on in large doses in the past, and now they are fighting with me over a very small dosage and withholding the medicine until they get the "proper prior authorization" validated with the doctor who wrote the freaking presccription. Didn't she give that "prior authorization" by writing the dang prescription?? I mean c'mon really???? I just do not understand it......they will send my MAJOR meds out with no questions asked, and overnight them free...(well I am sure it is built into the cost).....which I just found out(whoa Nelly) is $2000 a month they are charging the insurance....I only have to pay $50.00(looks like every 3 months). I am fortunate!! Now I know I gripe about prices and the cost of these things mainly becuase it is a shock to the system, and pocketbook, but I know how blessed I am to even have the insurance I do. I cannot fathom the thought of living without it.....what would we do?? I know there are places that will help with the cost of prescriptions for those who need it, but if you are in between those areas of can't qualify and over qualified, it has to be soooooo hard. It is just someting that makes me angry these days....I feel so sorry for those who have to deal with this situation day in and day out!!!

MRA Today

2008-07-08T18:25:00.001-05:00

I had the MRA today which is much like an MRI. They are looking at the blood vessels in the brain to see how things are moving in there. It only lasted about 5 minutes and I was done. I have to go in for more blood work tomorrow and see how my liver is doing. Maybe the Synthroid will be doing something by now and the Thyroid levels will be starting to come down.

Falling over.....

2008-07-06T21:13:00.003-05:00

in a crowd is not fun!! I was at the neighbor's house at a pool party, and I was trying to get out of a canvas camping chair and fell out of the chair, well, the chair came with me as I fell to the ground. I was trying to balance and stand, and the legs were not in synch with the upper half of the body, and there you go. I was almost flat on my face, but thanks to the knees, I only did a partial plant. This is the first time I have really had something like this happen where I felt my body being so weak and not being able to do much about it. This just sent me into a tail spin last night and I lost it all!! I guess I finally hit a low for myself and had an emotional break down and freaked a few people out in the process.

All day today I have had a hard time getting up and out of any chairs in the house. I just feel very weak in the legs and in my lower back. Hopefully things will get better over the next few days. I have also been noticing alot more tremors in my hands the past few days. Typing has become a little harder, and takes more editing because the tremors tend to cause me to put extra letters in or random ones that were not needed. I am constantly having to go back and change things due to this!! What is this MonSter doing to me??

Happy Fourth

2008-07-05T07:48:00.003-05:00

We spent most of the day at home. I had a horrible headache and Ken has been dealing with a hurt neck. We finally got moving about 5pm and went to a friend's house for dinner and then off to fireworks. The kids played, we all ate and played some dominoes. Around 9 we headed out to go watch Frisco's fireworks. It was a pretty good show. When we came home, we had a pretty good show going on in the neighborhood. I can't believe how many people were setting them off in our area last night. It was almost as good of a show as the Frisco one!! All in all it was a good day! Going nextdoor for a BBQ at the neighbor's today - they just had a pool put in.

Good grief.....

2008-07-03T21:09:00.003-05:00

I think I am in the anger stage of grief with this whole MS thing. I have been doing pretty good, I post on a forum of MSer's and get most of it out, and then I have this blog. Today has been rough though. I felt horrible all day, and was in bed most of the day.....then I got a call from the new neuro's office. Matt, her PA, called me about my blood work from last week. He told me my thyroid was up to 9.526 which is higher than it was before.....and that my ALT liver function is extremely high at 88 and the normal range is not supposed to be over 40. Of course I get this info on a holiday weekend, so I cannot talk to anyone (Dr.) about it. I looked back at my bloodwork from 5/21/08 and the ALT level was 23, so it was good then. I am pretty sure the Betaseron is what is causing my levels to be elevated. I just received a 3 month supply of the medicine today delivered by FedEx. I can just see that the doctor will tell me that I have to switch meds now that I have received this shipment. You cannot return it once it is shipped to you......guess I could EBay it......hahahaha

Then I ask him about the Thyroid tests that my other doc requested on the lab form, and he said it was not there. I guess they did not read the whole form and did not run the tests, and the techs even took extra blood to be sure and have enough. It was trying to as they popped one vein, stuck me in 2 other spots and could not get a vein, then finally did, and it stopped bleeding half way through, so they had to go to another spot. Finally they got enough blood.....I hate going to do blood work as it is always a pain for me. Literally! Either they do not listen as I try to warn them about my small veins, or they suck as a phlebotomist, and dig on me. Not fun!!!

Anyway, I just feel like every time I turn around there is something new going on, kinda like my body has turned against itself!! I feel pissed, ticked, angry, mad, upset, shocked, freaked, did I say mad, or angry??? What the heck is going on??????? I think I have been holding in a lot of stuff about it, as this all seems to have been going so fast and I have just been rolling with it. Today I feel like crying and screaming....but I do not want to freak anyone out. Sometimes being the strong one is not such a good thing......