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?