Explosion or Implosion?

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.....

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

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

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

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)

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

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!