just call me a guinea pig

Since my last post I got the blood results back and I am thankfully JCV Negative which means I am test dummy positive.

After further testing, including a full neurological exam, cognitive tests, and several different types of eye exams I was approved for the Tysabri Clinical Trial.

I had my first infusion in the beginning of November of it went well. it takes 2 hours, one hour for the actual infusion then I have to hang out for another hour to watch for reactions. thankfully it doesn't hurt and the nurse did a fairly good job getting the IV in my arm, usually that is a challenge since I have baby veins.

I go back for my next infusion in a few weeks, which I hope will go just as smooth.

The struggles I'm currently having, is my dang car... I can barely drive it around town without it breaking, let alone into another state. My mom has been great about taking me to and from appointments but I know it wears thin on her too :( With all my other medical bills I doubt I will be able to get a decent vehicle any time soon, but I guess that's the price of being an adult and being forced to make adult decisions...

On a happier note, this semester is almost over and it's Christmas time!!!!! MY FAVORITE!!!!!

the next step

This video pretty much sums up how I've felt about clinical trials for MS Drugs. I've always been leery of that option especially since there are always commercials for law firms saying "have you taken *insert drug here* in the last 2 years,have you experienced *insert horrible side effect or death here* call this 1 800 #"

I met with my new neurologist yesterday. I began the appointment meeting with the nurse. We went over my complete history so they could have an accurate account of my ms. I spent over 3 hours with the nurse and the neurologist and had things explained to me that no one has ever done before. Not only did they explain things but they explained them in "dumb people" terms. Nothing has made me more mad then when i would ask a doctor a question and get a response in doctor terms

We went through my MRI's one by one from the very first one. I was ab;e to actually see them and see where the lesions lie. Unfortunately, that also allowed me to see I REALLY am gaining new lesions every MRI :( This progression is aggressive and that is very scary.

Because of my MS's aggressive behavior, they once again want to change my medicine. This concept has always seemed to derail my life, however this time the thing that made me feel uneasy was the words "clinical trial"

After I swallowed the lump in my throat and got to here more about it... well.... i guess You can just call me a guinea pig.

The drug is called Tysabri, it's a once a month transfusion which beats the 3 times a week shots. It's actually been FDA approved since 2005 they just want to do some further tracking so it's no different then just being prescribed the drug. They will just want to track my tests, and the biggest plus is all my infusions, tests, and MRI's of the brain will be paid for. The next step is some blood work.

This new drug comes with some new risks, including contracting PML. A brain infection that can lead to death. Luckily there is a blood test that can check if I am positive or negative for the JCV Virus. the outcome of that tests will determine how high or low my risk of PML is and if I'm eligible for the trial.

I finally feel that I am with a doctor group that is going to care for me, and that makes the risks of Tysabri easier to stomach. Also on a side note, I was already getting tired of 3/week injections. And I know Mr. wonderful is getting tired of giving me shots in the butt.

We should have the results of the blood test in a few weeks so that will determine the next step.

An Update

 An Update: It has been far to long since my last blog, so here I am writing just for all my readers hehe :)

I first want to apologize for my last blog, it was a bit whiny and scatter brained, but I guess that's what you get when you write immediately after receiving upsetting news while the emotions and feelings are still raw.

Since my last post, I have seen a new neurologist in town Dr. T. who I'm still not thrilled with. However, I think i finally found a specialist to see me in Colorado. My first appointment is tomorrow which I am very excited about, but also nervous. The doctor and her staff came very highly recommended, but I'm trying hard not to get my hopes up.

I feel like my last two doctors didn't know how to treat me so they just kept giving me more and more steroids. the solu-medrol and prednisone make me feel worse then just going through the ms symptoms, and leave my looking like a junky with track marks up and down my arm since they can never get an IV in me easily.

I no longer work as a floral designer too, but my job at the NMSS is going great! I couldn't of asked for a better job. I'm meeting lost of new people; co-workers,  other MS'ers, and even some co-works who are also ms'ers :)

Lets see, what else? Mr. Wonderful still refuses to let me dump him, which is a good thing now that i need him to give me shots in my butt once a week :D That and the fact that I love him, among other reasons of course.

As far as symptoms go: everything is pretty much the same except I did have a spurt where the whole left side of my face went numb and I couldn't talk or close my eyes correctly. that was fun! I looked more drunk then ever! Also (Warning: Next bit of information may be TOO MUCH Information) I've been having issues holding my bladder, I swear I'm running to the bathroom 20 times a day. Like a pregnant women who is carrying a water hose for a child. i am now the proud consumer of what i like to call my "pee pills" so I can make it more then 10 minutes without having to make a mad dash to the facilities.

And on that lovely, very personal note; It's bed time for this girl.

i will do my best to write more often.

and again, things change

I am so tired of the inconsistency in my life, between changing medications, working 2 jobs, school and handling life I cant handle any more, and yet i find out my doctor is no longer in practice today with know warning. i got turned down by every doctor in this town when i was first diagnosed for lack of insurance and this Dr is the only one who would see me. I didn't always like her  and sometimes i wanted to change doctors as soon as that was an option but over time i started to respect her and feel she truly cared about me and my health. Now I am forced to try finding another practice or picking a new DR in the office she was in. Just pick a new doctor... this is completely easier said then done and so many factors go into this decision. It is a BIG choice!!!! so what i just pick? The office won't tell me where she went or why she is gone. Was it a personal choice or something else? they said they don't know IF or WHERE she will be practicing and can't talk about it legally. i don't know what that means...

So what now? i just pick a doctor... eeny meeny miny moe right. it's that simple to pick the person who will be in charge of my health and life: present and future. Due to not having insurance my options are limited.  once again I am left feeling insecure, vulnerable, lost, and confused.

Bike MS

I know it has been awhile since my last post. I have been very busy and dealing with a few challenges since then. I have started a new job at the National MS Society (I am still working as a Floral Designer too), moved into a house with Mr. Wonderful, had a few fight’s with my doctor (I will explain another post, another time) and started school.

Working at the NMSS has been wonderful! I just adore my boss and I get the opportunity to learn things that also benefit me personally and help others. This last weekend we trekked 5 hours to South Dakota to work at the Bike MS Fundraiser. Participants rode 150 miles on their bicycles to raise funds and awareness for MS. While working at this event, I met so many amazing people. Eight riders even had MS, and one rider was blind. Hearing all the positive stories encouraged me so much. I felt privileged to be a part of this group and was inspired to keep moving forward and not let MS ever hold me back!

 I worked with a great crew that made me feel like part of the team from the get go and definitely considered my limitations without making me feel bad. I definitely left this weekend with a few new friends!

I worked my ass off through the weekend and had the greatest time doing it. Mr. Wonderful even came along and helped too. Many people were very impressed with not only his hard work but also the way he is there for me. I am very fortunate to have such a great man in my life. I am very thankful for him.

The day we got home, I had to start school. I have never been concerned with telling people I have MS but as I drove to school, I started to panic, what if the teacher asks for introductions. Should I share? Should I not? I realized I never was scared to share before because I was sharing with people Io already knew and trusted Pre MS. These people are new…. I was very insecure about sharing my MS with strangers. The problem never arose since we were not asked to make introductions, but I am sure eventually I will start to meet new people in class, and I suppose as that begins to happen I will begin to share about my life.

Fear Monster

One thing about having MS means never knowing what will come next. One day you can be fine, the next our not fine at all. Living with the constant fear that your MS will take over again is enough to drive any one crazy. It's a fear that no matter how good you feel or how positive you are, it is always, and I mean ALWAYS on the back of your mind.

For the last few weeks I have not been feeling so hot. I don't know if it's from being stressed or maybe the heat, I don't know, but what i do know is Pre-MS (not to be confused with PMS) I'll say I was at a level 10 on feeling healthy. Then my big ms flare hit and i dropped down to like a 1. well after my treatments I never felt back at a 10 again so well call it an 8. during the last few weeks i feel like I dropped back down to  a 5. I have constantly been afraid of waking up one morning and ending up in the shape I was before (1)

I'm still learning how MS is going to effect me and when a new symptom is something to be concerned about, or write off as a part of the life. I finally sucked it up and called my neurologist and she thinks I am in the beginning stages of another flare.

Good News: I can do another series of solu-medrol (steroid) infusions to hopefully stop it it it's path.
Bad News: even though i have done these already, I am freaking out!!!

Good News: My neurologist wants to see me immediately. so I will do another MRI ASAP!
Bad News: my neurologist wants me to think about starting a new drug instead of the one I have been taking. Because of this, I am also, FREAKING OUT!

I like the drug injections I have been doing. For those who have not read my previous blogs. I do weekly injections of a drug call Avonex. I love this drug as much as you can love something that requires stabbing yourself in the leg every week. I handle the side effects very well, I know how to do the injections, and I just don't want to change! (insert foot stomp and pouty face here) i feel like I have only been on the drug for 2.5 months and they say it takes about 6 months to know if it's working so I just want to stick with it. However, I want something that works and obviously something is not working...

I climbed my mountain!

I am a very stubborn person! Whether or not that is a good thing i don't know, but i am a very stubborn person. Do not tell me i can't do something cause i may just kill myself trying to do it.

I was recently told i could not go on a 3.4 mile hike near Encampment Wyoming. it would be too hard and too long for me. I know the person telling me this was trying to help, but all it did was make me mad at said person and not let anything stop me from doing the hike. i felt the person should of been more supportive and less negative. MS does not mean i can't accomplish things, It just means i may need more time and assistance to complete it. Whether it's climbing a mountain or just doing the laundry, i can do it!

I had my mind made up. I was going before i even knew i had someone to take me. So come Hike Day, we got our lunches ready, water packed and headed out to the Green Mountain Falls. My dad, Mr. Wonderful, and I started up the trail and everything was going good. I had found myself a walking stick and most of the trail was shaded. The problem was the trail was made up of steep inclines and declines as well as covered with rocks and roots to climb over. The further into the national forest we got the slower i got. A hike that usually takes an hour to complete took us 2 and a half hours. I had to take several breaks along the way, more then i anticipated at least. There were even several points I worried, if I couldn't move any further, what would the plan be to get me off the mountain. Several times i thought about giving up, or regretting my decision to go, but the thought of letting MS win, and proving the person wrong motivated me to keep going. The last portion before the top of the hike I almost gave up. I was so hot and tired and in pain i just wanted to sit down an cry. Thankfully Mr. Wonderful was their to help me.

 I would not of been able to complete even a portion of this hike with out the help from Mr. Wonderful. He kept me from falling on several occasions and kept encouraging me to keep going when he could tell i was getting to my breaking points, as well as forcing me to take regular breaks; And my dad, I wonderful trail guide!

We finally made it to the top and found a place to eat our sandwiches and watch the rushing river. I felt so accomplished. Unfortunately, the waterfall was not as big and beautiful as it had been in the past, which was disappointing, and I will probably never do this hike again! I'm glad I went. I had to do it for me.

Now all we had to do was get back down the mountain and go home! Today (the day after) I am dealing with what I like to call an MS Hangover. I feel very imbalanced, like i haven't slept in week; even though i slept all night and most of today, and i have been dealing with headaches off and on all day. Even though I feel pretty crummy today I would not change yesterday for the world. Except for maybe the person who told me i couldn't do it being there and seeing it. ;)

Me at the top of the mountain!