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!

Supoort

I am absolutely amazed and grateful to many people who have stepped up and have helped me through this process. Not only physically but emotionally. Those that are close to me as well as those not so close. Many people have been readily available through Facebook with a positive note, or when I run into those that know out and about I am always encouraged.

One person in particular; a boy who grew up across the street from me, Landon. Landon was more my brothers friend then mine since he was older, but was always very kind to me. He would let me, the annoying little sister tag along when all the other boys said no. We have kept in touch over the years thanks to Facebook but very rarely actually talk. He will be sacrificing his time and lots of energy in August to partake in a Bike MS fundraiser. Over a  2 day period he will ride 167 miles for those that cannot ride for themselves. Landon let me know he will be riding in mine and 2 other people he knows honor.

I was very touched by this act of kindness from a person I've only somewhat known over the years, and am thrilled he is putting such great effort towards helping "the cause".

If anyone is interested Landon's goal is to raise $1000.00 for the National MS Society to help those in need and for further research. You can donate...

HERE

The ride will be held August 18th and 19th in Sundance Wyoming for those also interested in donating their time.

Normal ish...

This past Monday I went back to work. I was very nervous to do so. I had been gone for over a month. What if I forgot how to design? What if I couldn't handle the hours? What if...?
For this of you who don't know, I am a floral designer for a local flower shop. I only work part time, which I do for school. Its just a bonus now with MS.
Since I have been back I have loved every minute of it... well most minutes, it is still a job. I work mornings which is good for my energy levels except I've noticed everyday, when there is about an hour left on my clock I tend to get very tired. Currently our building is very small and hot. It also has scary cement steep stairs I go up and down several times a day. Thankfully we will be moving to a new building hopefully within the month. The new place is larger and is all one level.
So aside from going back to work, I have been fighting with the college trying to organize my school work and financial aid since there was some confusion with my paper work.
All in all I feel like I'm getting back to a semi organized normal ish life, and it feels good.

It's OK

Every day I realize more and more what my limitations are and how different things affect me. Recently Mr. Wonderful and I were asked to help his brother and sister-in law move some furniture so they could put new flooring in. as they were all moving things around I wasn’t helping very much since my numb hand and such doesn’t allow for it but I started to feel guilty. I thought his family must think I’m lazy. Well at one point his sister needed help moving a coffee table just a few feet over so I jumped right on in to help! I don’t know if it was because the table was a bit heavier than I expected, the act of shuffling to the side which I know from my physical therapy I’m not very good at, or I would like to blame it on my cute strappy little sandals getting caught on  the carpet, but my hand gave away. I lost my balance, practically threw the table and myself right into the edge of it, leaving my knee very sore and bruised and my ego hurting worse. Everyone just stared at me. I panicked and stammered out, “it’s just my…stuff.” I don’t know why I didn’t just say I have MS. These people are practically family and I should not be embarrassed to tell them the truth but for some reason I didn’t. I think I just hate to seem whiny or like I’m using MS as a crutch.

While in Saratoga, during this weekend’s trip to Encampment Wyoming I had a bit of a meltdown. You know those obnoxious Snickers commercials with the burly construction workers or the cute young college co-eds and one of them is a grouchy old person who doesn’t seem to belong. Eventually they are handed the candy bar and told they don’t act like themselves when they get hungry, so they eat the snickers and that person turns “normal”? Well that is how I feel. I used to very rarely eat breakfast or lunch then would eat dinner and call it good. Now I’m finding if I don’t eat regularly it really affects me.

Now imagine you are in the grocery store in an aisle with a mom and her very cute 4 year old who is insisting they NEED the toy they just found. Mom keeps saying no and to put the toy away so they can finish shopping. After going back and forth a few times they 4y/o makes one last feeble attempting by planting herself right there in the middle of the floor refusing to move until she gets the toy! I feel like
I have taken lessons from that stubborn little kid deep down inside me once I get tired. It’s like hitting a wall. Like my temperature there isn’t much of a warning before I get to tired or too hot. I just hit that point and there is no turning back. I am just too tired to pick myself up off that store floor. Along with not wanting to move when I get tired, I lose my motor skills. The later at nigh it gets and the more tired I become the less my mouth seems to work. I tend to say things like, “Nood Gight” instead of Good Night and “I Ceed Noffee.” As well as my balance gets a little questionable. I’d make a drunk proud. When I get hot I feel like I can’t breathe and I’m going to pass out. It doesn’t take much heat to push me to this point, and once I’m there it take a lot to cool me down. Now add being hot, hungry, and tired all in one and I suggest you not talk to me because unfortunately my filter also goes.

 Now I know I have MS, I understand for the most part what that means, and have accepted it. There is no doubt in my mind that that this is true. In fact all of my tests were very clear. However, I have these occasional feelings of denial. Although I can track the disease back a few years it still feels like it came out of nowhere. It is hard to wrap your mind around it. Things I was doing just a few months ago I can no longer do. Previously on any given night you could find me sitting in the hot tub. I would be out there for hours. Now a measly 3 months later while in Saratoga I can’t even enjoy the mineral hot springs. I really wanted to go do some hiking over the weekend and that never happened either. Every day is a learning experience for me and those around me. What I really need to learn is to let it be ok. Be ok that I can’t do the things I used and handle simple things like running errands all day like I used to. It’s ok to say I need help and it’s ok to take it easy if it means putting my health first.

My orange has a drug problem...

Thanks to many dedicated people out there and advancements in technology there are several Disease Modifying Drugs (DMD) available for those with MS. Before you would basically just get sent home and told to come back when it got worse. It was commonly accepted that those with the disease would eventually be immobile. Fact is, today only 1/3 of MS patients end up wheelchair bound. The DMD's currently on the market do not ease or alter the symptoms that go along with MS, but effect your body on the inside in hopes to slow down the disease progression, and exacerbations. (attacks or flares) By the mid 1990's the first 3 DMD's were approved by the FDA, these treatments became known as the ABC drugs due to their names: Avonex, Betaseron, and Copaxone. In 2002 an equally productive drug called Rebif was released. By 2010, 4 more drugs were approved and today their are 3 more treatments that should be approved in the next few years.

When it came time for me to go over my drug options with my neurologist I expected her to just pick one for me. However, I was sent home from her office with 4 large books/DVD's full of information on the ABC drugs plus Rebif. I was to do my own research and pick a drug my family and I felt was best. This was the same day I was diagnosed and i went home with an information overload. I had 2 weeks to make my decision and I must say I hardly opened her material but got online instead. The drugs were all very similar, all of them were self injections they just differed on how often and location. They also all shared the same main side effect of flu-like symptoms. As well as they all had similar pricing. Unfortunately that pricing is between 3-4 thousand dollars a month! After lots a reading, and a homemade flow chart my English teacher would be proud of, I chose Avonex.

I chose Avonex because, well, first of all you only inject once a week whereas the others were everyday day up to every 3 days. Also the percentage of people who experienced the side effects was significantly lower compared to the other drugs. After getting my doctor's approval, and playing phone tag with the drug company I finally scheduled for a nurse to come train me for self injections. I also very, very fortunately found out I qualify for financial aid from the drug company.

I never really had any reservations on giving myself injections. Now don't get me wrong I'm not exactly excited about the idea. I just understood and accepted this was something I had to do. I received a whole kit in the mail with my needles, syringes already fill with the medication, a sharps container, and a booklet. I never felt nervous until the night before my nurse was to come I went through the booklet and actually looked at the needles. They next day Nurse Kim came over to train my mother and I. We talked about side effects and needle safety among many other things. Then it came time to practice. Nurse Kim brought out a nice looking orange that I got to pretend was my leg. I learned how to remove the excess medicine since my first month is a titration period where I start with a lower dose and work my way up. I also learned how to assemble the needle to the syringe clean my skin and stab my orange.
1...2...3! I let that poor orange have it! I was very surprised at how easily the needle went into the orange. I wondered how similar my skin could actually be to that. Next was Mom's turn. I didn't pay too much attention to how she did, I probably should have in case she needs to do it for me some day. Then before I knew it, it was time for me to actually do it to myself for real. I had a small moment when I thought about panicking. If I could just delay it, but what's the sense in waiting longer? It would just give myself a chance to worry more.

I very carefully rolled up the right pant leg to my capris. I very carefully squirted out the extra liquid. I very carefully layed out my now assembled injection, alcohol swab, gauz, and bandage. I then very carefully cleaned my skin held my skin tight. Took three very slow and careful deep breaths. 1.... inhale 2... exhale 3... inhale and while I exhaled that last time I pushed that needle down into my leg. Almost like I used to force of my breath to push it in. And in it went. If I didn't know better I'd of thought I was stabbing the orange again. I was so shocked how easy it was. Then I had to release the meds and remove the needle. Although I was very careful, that did sting a little. And there it was, all done. My mom then got very excited she couldn't believe it went that quickly. Now I just had to wait to see how the side effects would hit.

I pre-medicated with ibuprofen before, after the shot, and before bed to combat the flu feeling. I ached all night and woke up feeling like a train ran over me. My head hurt,  my body hurt, I was in a fog. I had a fever for most of the night going from burning to freezing. I slept in till almost noon. Took some more ibuprofen then just stayed in bed. Thankfully by about 2 i ate some soup, showered and felt much better. Besides being tired I was back to as normal as I get. All in all I think I will handle this medication just fine. Or at least for the first month till I get the full dose and an auto-injector pen.

And so it began... PT2

The day after I was in the ER I called the neurologist I was recommended to see. I left a message, then waited: I never heard back. I called again, left a message, then waited. Rinse wash repeat. I called a few more times until one day a familiar voice met me on the other line telling me, "this number is no longer in service... " I called the hospital then to find out what was going on and was informed that Dr. NoLongerInService works out of Texas and was only temping here for a few days. I took finding a neurologist into my own hands at that point. I approached this task like I had options. I researched the doctors in Cheyenne, asked others who they liked, and made a fairly educated decision who I wanted my doctor to be. I called to schedule an appointment immediately, unfortunately the not so nice receptionist declared I wouldn't find a neuro in this town that would see me without insurance. After being turned down by a handful of others for the same reason I began to feel helpless. I had to get a neurologist to pick me, I didn't get to pick them. The only thing we could think to do during this time was go see my general practitioner. (gp)

During all the time I wasted playing phone tag and losing hope I was researching everything I could about MS and Lyme disease. during my research I had read that many people with MS are heat intolerant and should not take too hot of showers, spend too much time in the sun, or sit in hot tubs. Well it was a few days after I was in the ER and feeling a little blue. Normally I would go take a nice long soak in the hot tub. Now i knew the risk, but I did not have MS. so I enjoyed a very relaxing evening with Mr. Wonderful in the hot tub. The next day I had the worst day I have had with symptoms. I woke up and was unable to get myself out of bed I was very weak and felt like i was burning up. very similar to the flu but like a flu I never experienced before.I don't remember much about that day, I was incoherent for most of it, I just remember being carried to the bath by Mr. Wonderful and was stuck in a cold bath, I wasn't even able to hold myself up, I had to be propped up in the tub by sitting width wise instead of length wise and had to be held so i didn't topple to the side. I slept for most of the day.

*side note: Before MRI Technology one way doctors tested for MS was to record the patients strength, stick them in a hot tub for 20 minutes, then test the patients strength again. If MS was the cause the patients strength would have declined dramatically*

After my hot tube extravaganza and lots more research I began to realize I probably did have MS. As my family and I processed this possibility I got the opportunity to watch others reactions. My mom kept hugging me and looking at me like I was dying. My brother hadn't called me a nasty name in a few weeks. My dad reacted just as I expected him to by not reacting at all, My sister did exactly what I didn't expect her to do, and wasn't really helpful at all. My grandma felt she was being punished cause I was sick. And I began to hate God.

My mom taught me not to put all my eggs all in one basket. So why should I trust all my eggs to my "savior" if he just broke them. The longer it took to find answers the worse my health got, the more I blamed God. I know I was being irrational, but being able to pin the blame on someone or something seemed to help since I couldn't get any answers. I also went through a bout of depression where i decided to quite school since I'll never be able to be a teacher anyway, I had to sell my car since I;ll never be ab;e to drive again, and I had to dump Mr. Wonderful because this was unfair to him. I even planned my break up speech. Thankfully I never did any of those things, especially break up with my honey.

I never quite recovered from the hot tub attempt. Walking was getting harder and harder, my coordination was on vacation, and i began to experience all sorts of new symptoms. I was getting regular burning sensations in my legs, and going to the bathroom was becoming an event all in itself. many people in town began to find out something was wrong and i received several texts from people who heard rumors that I was in a wheelchair from a car wreck.

We finally got in with my gp who had my ER records sent over. She was able to explain in stupid people terms about the white spots and their locations. She had a friend who was a new neuro in town trying to build her clientele so my gp gave her a call and before I knew it I was scheduled to see Dr. K. My first appointment with Dr. K. was not quite what I had hoped for. I was sitting on the itchy paper covered bed when the doctor came in. She barely got out an introduction before she started poking and prodding, literally. I was being poked with what seemed like an over sized push pin, hit with a rubber hammer, constantly being asked, "can you feel that now?" I felt like i was in a cruel cell phone commercial "Can you hear my now?" At the end of the exam, due to her ethnicity my mother or I could hardly understand a thing she said with her accent. We both walked out confused, again.

The next week I was let go at work temporarily until i could figure out what was going on. I think it's cause i was so unstable I was a liability. I could barely walk. I was forced to use the electronic carts or a wheel chair whenever i went anywhere. Many people in town began to find out something was wrong and i received several texts from others who heard rumors that I was in a wheelchair from a car wreck. I was also forced to use a shower chair since i was unable to stand for any length of time. Over the next few weeks I had another MRI, a ton more blood work, and a spinal tap. (my life was based off a hurry up and wait philosophy) When I saw Dr. K. to get my test results. she was much more personable. In fact she was a very pretty woman once she smiled. I'm not sure if she was just having a bad day during my previous appointment, or if she felt  uncomfortable being forced to tell me I had MS. That was the day I was officially diagnosed. almost a month after my initial ER visit. A month that felt like an eternity. This is where my blog began.

By the end of all my tests i have found that I have lesions (white spots) all the way down my spine which is not a good sign, however my doctor is still unable to determine what type of MS i have. Only time will tell. (I will explain the different variations of MS in a future post.) We have also picked a drug treatment which I will be starting later this week.

And so it began... PT1

I was at lunch with my mom quite a few months ago, before ms was even a word in my vocabulary. I was trying to explain to her how something was wrong with me, but without a fever, runny nose or any other sign of sickness she only saw her very healthy and over dramatic daughter sitting across from her. I couldn't explain what was wrong with me I just knew something wasn't right. Unfortunately I had no insurance and my money tree just wasn't growing so there wasn't much I could do about it. I knew my coordination wasn't as good as it used to be, I would constantly trip and fall for no reason. My legs would always feel restless at night. I was also developing a sensitivity in my legs to cold temperatures. As well as vertigo.

I had had quite a few falls during this time and the coming months, I usually tripped over my own feet, or my knee would give out on me for no reason. My left foot wouldn't always move when I wanted it to move. I was scared to even attempt running or jumping of any kind. Then I was sitting in a meeting in February when I noticed my left hand was tingling a little. It was like when your hand falls a sleep and you have to wake it up, however no matter how much a rubbed it and shook it it would not stop. Throughout the next month the numbness had worked it's way up my arm down my side, leg, and into my foot. It seemed the more I tingled the weaker I got. Work was becoming more and more difficult, as was just getting around. By March I had not gotten any better and my mom encouraged me to cal my doctor. When asked why I needed the appointment I explained what was going on and was told to hang up the phone, go immediately to the E.R. do not wait. So naturally I waited until the next morning to go in.

During the 7 hours I was there, the hospital ran a series of tests including a CT Scan, and blood work. All my tests were coming back normal and I was starting to get frustrated thinking I wasted a whole day, missed work, and will have to pay out a ton of money to still know nothing, when my Brain MRI results came back. The doctor came in and said there were white spots in my brain then walked out. I was left very confused and very angry. She later came back to further explain that I probably either had MS, Lyme Disease, or this may just be normal for me. I asked her where the spots were exactly and reverted to doctor talk and I didn't understand a word she said. We left the ER that day with a lot of confusion and a referral to see a neurologist.


This was the beginning for me.




 

Education and Understanding

I am writing this blog not so i can whine and cry about my life, but in hopes to help others learn about MS. Learn about how it effects the body physically, but also emotionally.

First off i have to add a little disclaimer: I am learning everyday how this disease works from a first hand experience and i don't know everything by any means, so we will have to learn together. MS is very hard to diagnose due to not every case is exactly the same. What i am experiencing is not the same as another MS'er but only similar.

I feel the best way to start is by explaining what MS is because many people have no, or very little knowledge of it, and I am learning Knowledge Is Power. So please bare with me through this very dry material.

I'll start by defining Multiple Sclerosis. (MS) Multiple meaning more then one. Sclerosis meaning scar or lesion. MS is a chronic, often disabling disease that attacks the central nervous system (CNS), which is made up of the brain, spinal cord, and optic nerves. Symptoms may be mild, such as numbness in the limbs, or severe, such as paralysis or loss of vision. The progress, severity, and specific symptoms of MS are unpredictable and vary from one person to another. The body’s own defense system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue. (sclerosis) When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.




Most Common Symptoms Include:
Fatigue; Numbness; Walking, Balance, and Coordination Problems; Bladder and Bowel Dysfunction; Vision Problems; Dizziness and Vertigo; Pain; Cognitive Dysfunction; Emotional Changes and Depression; and Spasticity.


Less Common Symptoms are:
Speech Disorders; Swallowing Problems; Headache; Hearing Loss; Seizures; Tremor, Breathing Problems, and Itching


Many misconceptions about MS are that is is fatal, contagious, and there is a cure. MS in neither of these things.

Facts about MS:
Heat makes your symptoms worse. (no more hot tubbin for me)
Women are twice as likely to get it then men
MS usually starts to show itself in 20-30 year old people
There are over 2 million people in the world with MS, 400k of which live    in the US.

Alright i know that was a lot of info to take in. I'm sorry to put it all out there but i hope it will give you a good base of knowledge for if you choose to stick with my blog and join me in my journey.

Roller-coaster of Emotions

That is exactly what I feel like I'm on: A roller coaster. I am coming on 3 weeks since I was diagnosed and have been more emotional then I was when I was a pubescent teen. I started out feeling a sense of relief and joy, just knowing I wasn't crazy was good news! I went from a hurry up and wait history with my doctor, to being at the hospital everyday for a new test or treatment. I began a 3 day regiment of steroid infusions (solu-medrol) the day after diagnosis and it was like a miracle drug. I was up and walking by the third day and beginning to feel functional again. I also started physical therapy right away and was told by my doctor I needed to research my drug options. I relished in being so busy. It allowed me to ignore the fact that I have MS.

Now that life has slowed down again I've had the chance to really let that sink in. It still sounds weird to say, like I'm speaking a foreign language when i say "I have MS." What does that mean? I understand what MS means in the physical aspect. I've done more research on that then i ever did towards my studies. But what does it mean to who I am? A day doesn't go by when i don't think about it, life seems to be a constant reminder. Its not any big struggles that i have problems with, it's the everyday little tasks i can't complete that constantly remind me: getting ready in the morning has become an event in itself, I'm usually too worn out to do my hair and make up. (i chopped my hair off because of this fact) I can't stay out late like a normal 22 year old unless i want to spend the whole next day in bed. Every time i find a new task i can no longer do, or do to my standards i feel like a part of the old molly dies and I'm forced to turn into this new person. Whats scary is i don't know who this new molly is going to be. I find myself laying awake at night wondering and crying when i should be resting.

Having MS makes me feel guilty. Guilty i can't live my life like my friends. I feel like I'm holding Mr. Wonderful back and it's unfair to him. I feel guilty to not be working, and being too tired to keep up on the household chores. then i feel guilty for feeling guilty. It is an awful cycle and I'm only 3 weeks in. What does my future hold?

Today is the first day of the rest of my life

I always hated that saying,I thought it was cliche' and lame;  until today.

       Today I was diagnosed with multiple sclerosis (MS). Now I know this is not the end of my life or a death sentence or anything like that, however it does change a lot of things. This diagnosis didn't come as a shock to me, I was well prepared and educated in MS since the first point of that being a possibility. However that doesn't mean I'm any less scared. I am laying in bed with Mr. Wonderful snoring away next to me, and I can't help but worry about all the "what-ifs." Damn what-ifs will always ruin a good nights rest. So here is my list of what-ifs, in no particular order...

1. What-if I can't walk down the aisle on my wedding day.
2. What-if I can't dance ever again. (not that I'm good at it)
3. What-if I am a horrible mom cause I'm too tired to play with my nonexistent babies.
4. What-if I can't have a career. (I want to be an elementary school teacher)
5. What-if I'm a burden to others.
6. What-if I never go to church again.
7. What-if I'm too tired to cook and bake.
8. What-if I can't afford my medical bills.
9. What-if my medications make me worse.
10. What-if no one ever reads my silly blog.

I also wonder how this will effect my relationships with family and friends. Lucky for me my friends are few so that's not a big deal. However, I did post it on Facebook for all my closest  acquaintances to see. I struggled with whether or not to post it for quite awhile. I didn't want to seem all "whoa is me," trust me, that "my thoughts and prayers are with you" gig got very old very quick. I also didn't want to keep who I am a secret, cause whether I like it or not this is now a part of who I am. It also seemed necessary to share, seeing as how I live in a small town and people already knew something was wrong due to me walking like a 90y/o everywhere I went. So alas, I made a post. I don't know if anyone will read it or care, but I thought long and hard how to phrase it so I didn't sound pitiful or dumb. 

"So, I was diagnosed with multiple sclerosis (MS) today. It's alright though, it just means I have to be stronger and kick more ass."

That is what I came up with... I know it's not brilliant or thought provoking but it is what it is. Just like I am what I am. not that I know what; or should I saw, "who" I am, but that is what I intend to find out through this crazy thing called life. (There I go with the lame phrases again.)