Monday, April 27, 2009

And I just finished #7!!

Well, it has been an interesting couple of weeks. Seems they messed up MRI #6 so I got to go back in this morning for a retake... yeah that makes #7. Wasn't so bad though they got me in and out pretty quick.

Yesterday was my Darling Daughter's birthday party. We all had a great time, my house is trashed I will be spending all day cleaning up but it was worth it. The whole family came out, even the adopted/extended family. My ankles started protesting last night since I was on my feet all day.

So here is the deal.... my vision has returned to normal, I have no numb spots, no more lightening bolts down my spine, no more back spasms, I am actually sleeping at night time, and I have not been on ANY meds in over two weeks. I feel like I have my body back. Other people are noticing too. There is color to my face again I can walk in the middle of my rooms where before I was always within reaching distance of a wall. My daughter and I are enjoying the warm weather and playing outside and walking and I can see/feel to drive. I no longer feel like a prisoner in my own house.

I spoke to the pharmacist about the Rebif. He tells me that only 3% of people who take it develop thyroid disorders. What about the people who have already been diagnosed with thyroid problems?? How does it effect you then? For that I am told to consult my neurologist before starting the drug. The more I think about it the less I like the idea of being on this drug. So I have made the decision not to take it, which is something the neuro and I will have to discuss when I follow up with her next week.

One other note... The latest MRI showed the giant lesion in my brain is active again. Not that it really makes any difference seeing as there is no drug to effectively treat it or stop it from growing.

For now I have decided the doctors know plenty about this disease but it is true that it effects each person differently so when it comes to my individual case they are clueless. Symptoms were unbearable before I started the Copaxone... the new symptoms and increased intensity of all symptoms I got from the Copaxone and the steroids was enough to make me want to give up. Had I known how much worse it would get I would have chosen to live with the symptoms I had to begin with. You see the symptoms were unbearable when i started the Copaxone because I had no idea they could get worse.

Hindsight is 20/20 and I can say the "unbearable" symptoms that started all of this was nothing compared to the person I became over the 4 months I was pumping my body full of useless medications that did nothing but make it worse.

I also know that this is not a disease that is just going to go away and to think I will never be on meds again is ridiculous to say the least. I know that it is going to come back I know that it could be worse than ever before. But I also know that for now, I need to do what I feel is best and that does not involve injecting myself with a drug that will make me feel sick.

Wednesday, April 22, 2009

And another MRI!!

Man I am starting to fear walking into my kitchen because I am scared the utensils will start flying at me! This is MRI #6 since October. This time it was to look at my optic nerves and my brain. Doctor is concerned now about the ON which is of course going away now that I have stopped the Copaxone. I feel like me again!

The neuro wants me to start Rebif.... I am having a really hard time with this decision. I am feeling so much better now that I have stopped all of the meds and now she wants me to start another one which has had nothing but poor results to go along with the negative side effects. And the side effects are astounding! I really don't think I want to put my body through all that for something that has a 35% success rate. If they printed that it has a 65% failure rate nobody in their right mind would try it.

So I am looking into more holistic approaches to this disease. You see before I had MS I was able to treat any illness or insomnia or ache with a simple tea therapy. The only time I ever went to the doctor was when I had strep throat. It's the only thing I couldn't cure on my own. Even the majority of my pregnancy was treated herbally.

I don't know. I ramble. But there has to be a better option.

Tuesday, April 14, 2009

Wow, you look great! Of course I do I stopped taking Copaxone!

What bad could come from an MRI you ask me? Normally I would tell you nothing. It's the least painful procedure I have ever had at a hospital. Yeah, I get a little tensed up after more than an hour in the machine, but it's really not that bad.

My fiance on the other hand, tells a different story. He went in to have an MRI of his leg done. Should have been a simple thing. After waiting for hours for the Army doctor to get him in the machine, he was finally surfing the tube. Mind you, he has a steel rod in this leg from a previous injury. He comes home in pain and says his throat hurts.

So begins the case of walking pneumonia. His MRI was on a Saturday evening and by Sunday afternoon we were in the car on the way to the emergency room. Two EKGs, a chest X-Ray, Bloodwork, mouth swabs, nasal swabs.... We were there for 6 hours! He didn't care they had given him morphine for the pain, he was out like a light. I was finally able to take him home with a diagnosis of bronchitis or walking pneumonia and a z-pack.

Of course by Monday night I was getting the yucks and by Tuesday morning I was a mess. I ended up calling my mom to come take me to the doctor and take my DD to her dad's house. Hey wouldn't you know? I have walking pneumonia says the doctor. Awesome! I also had a fever of 103 and wanted to kill any living being that came within a 200 yard radius of me.

Fortunately the antibiotics seems to be working, even thought I am still not "cured" of the crud. During my fever induced psychosis I managed to skip a few doses of my Copaxone. I was about to inject myself one day and decided that my body had enough stuff going on and it didn't need anything else to fight it off. I made the decision to stop the Copaxone until after I finished the antibiotics. Tomorrow is my last day of the antibiotics and today is my follow up appointment with my neuro. Boy is she going to be happy when I tell her I stopped taking the Copaxone and I don't intent to start again.

Since stopping the C I have regained feeling in my feet, I no longer have lightening bolts flashing down my spine every time I bend my head. I can lay in my bed without my back spasming, and I can actually fall asleep before 3 AM. I still have numb spots in my legs, and I am still having Optic Neuritis issues, but I am feeling better than I have in months. Now I know this could be a coincidence that after eight months this "flare-up" is finally subsiding but I don't think so. I think it was the copaxone making it worse.

Wednesday, April 8, 2009

I finally found a perk to this dang disease!

Actually I found 2 perks.

One I got a really cool t-shirt. Reminded me of the fight I had with my ex when he told me "well, you don't look sick" My response of course being that he didn't look like a Moron, but looks CAN be deceiving. I was playing online the other night and ran across a T-shirt on zazzle that says "I may not look sick but you should see my MRI." For some reason at 4 a.m. this gave me a case of the insomniac giggles and I decided I had to have it. I even customized it and added a pic of one of my MRIs it's a really cool shirt that my mom thinks is completely sadistic, so see even more oolness points there.

And perk number two... Well, not so much a perk as a ha ha I win! My fiance went in to have an MRI on his leg (you know, the one with the steel rod in it) Can't imagin why that hurt so bad. So he comes home and proceeds to get sick, and sicker and sicker until Sunday afternoon when i put him in the car and drove to the ER. An IV of morphine, 6 hours and about 20 tests later... He either has really bad bronchitis or walking pneumonia. Well wouldn't you know it started kicking my butt on Monday. I ended up at the doctors office on Tuesday begging for death to claim me now before it gets any worse. yes, me with a 103 fever makes a sick pathetic girl. He gives me a different antibiotic than the fiance and he decided another course of oral steroids would be in order. well it seems to be doing the trick aside from a sore throat i feel fine. Poor fiance can't get out of bed without getting dizzy. He is headed back to the Dr tomorrow. So ha! Sucker you give me your crap and I will get over it before you.

So yes those are my two perks... better drugs and t shirt.