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.

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.

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.

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.

Contemplating egg donation.

I got the results of my MRI. As i suspected they were not good. The radiologist used the term progressing three times and considering it has only been 5 months since my last MRI it is a little scary and I am a little freaked out.

Started Baclofen to help with the back problems. So far no luck it works for about 20 minutes then wears off. Did I mention my body hates me??

I emailed the head of MS studies at Johns' Hopkins today, something I have been putting off for some reason and today I discovered that reason. I was waiting for more time to pass to see which direction the disease would take with the treatments we had tried. I sent him what seemed like my entire life story and begged him for help. I am waiting to hear back from him.

I am also waiting for my neurologist to come back from vacation. And I am waiting on the repair man to come fix my sink and my light in the kitchen. Seems my entire life has become one big game of waiting lately. I am not a patient person, waiting makes me over analyze any and everything.

Back to my title, while I was on the JH webpage I managed to find the page to sign up to be an egg donor. I am wondering if I can donate eggs for research, or if they would even want my eggs seeing as I have the whole MS monster attacking me right now. But, how great would it be if I could donate my eggs for something useful that could potentially save lives as opposed to sitting here mourning the fact that I am not going to have any more children? I made this decision a while ago, that if I am able to do it, i will. Even if it doesn't help me, if it can help someone else it seems worth it.

Baaa Baaaa balck sheep and Good bye NT I will miss you.

So I have pretty much been banned from NT. Which sucks and was the one place I actually found some sort of balance. Unfortunately there is a certain moderator who has it out for me, and no it's not all in my head.

I even posted a goodbye to everyone telling them they can find me on myspace or yahoo and that message was also yanked by said moderator. Apparently I am not allowed to say that the reason I am leaving is because I am tired of having my hand slapped every time I post something. It seems I am too offensive for the MS community.

So for those of you still allowed to post on NT, if you could please pass the word I am still around on yahoo. Legzzalot there too. Same name on myspace.

Today's temporary moment of insanity brought to you by The T Cell Mafia

Spent two days getting new MRIs. Resulting in massive bruises and more blown veins. You know, it's kind of funny. When I was in High School I really got into body piercings. I had 3 holes in each ear, an eye brow ring, a nose ring, cartlidge pierced on one ear, a belly button ring and even the little skin between your thumb and forefinger. Of course I had the platinum blonde spikey hair and neon pink bangs with cotton candy pink highlights throughout to go with all my metal. When I turned 18, I got a tattoo. Yup, I thought I was a real badass!

Now I give myself daily injections and every time I so much as look at a nurse I blow a vein somewhere. Nowadays if I want to rebel and be hardcore I leave my house without my giant bag of prescriptions. Driving to the grocery store is now an adventure and the highlight of the week. I find myself agreeing with the republicans and wanted to hold teenage boys down and cut their hair, and buy them pants that fit!

Last night was a fun adventure. My back started killing me. And by killing me I mean I can feel my spinal cord rubbing against my spine. So I decided to bite the bullet and take the percocet. Which I hate doing, I have always hated drugs and up until being diagnosed we didn't so much as own a bottle of asprin. But last night I simply couldn't take anymore pain. Percocet is a brilliant idea in theory.... unless in a pain riddled half blind from the Optic Neuritis moment of insanity you take a water pill instead.

I realized this mistake about an hour later as i got up to pee for the 5th time. It is now 3:00 in the afternoon and I am still awake. I think the water pill finally wore off. I moved my laptop upstairs to my bed and have been trying desperately to fall asleep since 11:00 this morning.

2 percocets and 4 ibuprofins later... my stomach is doing somersaults and I am having more hot flashes than a 50 yr old woman.... And my back is still spasming. I get my MRI pics monday. Doctor has decided we are going to try the IVIG since the steroids only managed to make me sick and aggravate the symptoms I was having.

Oh yeah I am adding pics from the two IVs they did for the MRI. So you can imagine the thrill I am experiencing at the idea of anoter 5 days of IVs every month.
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I'm alive! That is the good news....I think.

Hi everyone! I know I am MIA again. I promise I am not ignoring everyone. I did my 5 days of IVSM and I have been tying to recover ever since.

The good news is this round wasn't as bad as the last one. Doing it at home was a lot easier, but I did have some issues that will probably prevent me from doing it at home again. The bad news is, all of my symptoms are worse. I have been in my house for a week and today was the first time I was home without a babysitter.

This one unfortunately is going to be short I am trying to type with one eye closed and squinting out of the other. My right eye decided to go kuput since it's been over compensating for the left one since Dec. Balance is actually worse, but I was able to high five my best friend the other night in celebration of the fact I have not fallen down the stairs in over a week.

I even got to deal with my old company for two days while I was in the midst of steroid rages. I paid my Cobra payment and THEY didn't pay the insurance premiums. (I am not surprised) They have a habit of not paying their bills, I am so glad I don't work there anymore. Took me threatening a lawsuit and about 30 phone calls to get all of that settled.

Tomorrow I have the back to back MRI scheduled for the spine pictures and then I get to go back Friday for the brain. Now seeing as I cannot see clearly or feel the pedals to drive, I get to rely on my mother again, which makes me feel a little pathetic, but I am glad she is here.

Ok, I am going to go get some sleep...Well you know what I mean, I'm gonna go drug myself with enough muscle relaxers to tranquilze a horse and hope it stops the spasming long enough for me to get the 3 hours of sleep I need to prevent me from becoming dillusional.

IVSM Survival Kit!

I am starting another 5 days of IVSM today. Which reminded me to go to the store before the nurse gets here and pick up all of the things I remember needing from the last time I did this. And then I thought I should share this for anyone who is about to go on IVSM. These are things my doctor didn't tell me I needed.

1. Gatorade! Lots and lots of gatorade!You will need all of the electrolytes you can get.

2. Hershey's chocolate bars!Big ones! Why? Because the IVSM causes your blood sugar to go haywire and they best solution is a little bit of chocolate to help regulate it.

3. Cranberry juice. The last time I was on IVSM I ended up on water pills because I was retaining fluid so bad. i gained 7 lbs in 3 days! You need to be able to pee to flush some of this out.

4. Mints. IVSM leaves a horrible taste in your mouth. The mints help you to make it thru the infusion without being nauseated.

5. True Lime water flavoring packets. These are very strong and normally don't taste very good. If you are not hydrated it increases your chances of blowing a vein. My last 5 day round resulted in 6 blown veins. I couldn't drink water because of the taste from the IVSM. The true lime is very strong and helped to override that taste so that I could drink water.

6. Excedrin. Migraines normally hit me when my blood sugar starts spiking and falling. Excedrin helps.

7. Make sure all of your prescriptions are refilled. You are not going to want to leave your house to go get medications if you run out.

8. Movies. I rented a bunch of movies this morning because I know I am going to be home alone and not feeling like moving.

9. Fruit, Veggie, and Cheese trays. I buy the little ones. It helps to be able to eat a little bit every few hours. These are very filling, they help settle your stomach and regulate your blood sugar. they are also a lot more nutritious than popcorn or candy while you are zoned out watching movies.

I am sure there are more things to add to the list, but these are the ones I remembered today. And if anyone else has any suggestions please feel free to comment. Input is always welcome.

Met my new neuro today.

And I get to look forward to 5 days if IVSM again! BLAH! And I am scheduled for next
Thursday for spinal MRI and I get to go back Friday for another brain MRI. She wants to see how many new lesions are there and/or if the existing ones are growing. She did use the p word today. Fortunately she's not ready to sign that death warrant just yet.

She did agree that my last doctor was a moron for giving my the medrol dose pack and hoping it fixed the Optic Neuritis, and for not doing anything else when two tries with it didn't work. Or, as she put it "like putting a band aid over a bullet wound" I am seeing 60/80 out of my left eye....with my contacts in! That's a little freaky. I can see perfectly out of my right eye.

The good news is, I should be able to do the IVSM at home this time instead of having to drive to the hospital every day, go thru registration, and go to another building for IV therapy where they still managed to blow up all my veins.

The new doc seems pretty cool, even if she is a lot younger than expected. I don't know why I have a prejudice against young doctors, I guess I see them as inexperienced. But on the plus side she is not too far out of med school so hopefully she is a little more up to date than Dr. Idunnohaveanotherpainpill.

Oh and the weird electric current going down my spine when i bend my head is not me going crazy it is apparently a rather ordinary symptom in most MS patients. See I'm not as crazy as I look.

We are taking bets on the MRI results. So far the pot is up to $50. I am betting there are 5 new lesions. Some bet more, some bet less (they obviously have no idea how this disease works) and one person is betting no change. Let's see who's right.