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.