Sunday, August 31, 2008

So much going on.......

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.

Tuesday, August 26, 2008

Been feeling.....

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.

Sunday, August 17, 2008

No Rhyme or Reason

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!!

Thursday, August 14, 2008


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

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 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.

Wednesday, August 13, 2008

Daily Prayer Sent From a Friend

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.

Monday, August 11, 2008

No news is Good News Right?

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!

Tuesday, August 5, 2008


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.

Saturday, August 2, 2008

What a day!!

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!

Friday, August 1, 2008

Too Many Pills!!

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?

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.