Keep Smyelin

It's been awhile, over the past month a few things have happened. Our golf tournament was a HUGE success, we made over $4,000 which considering we didn't do as much as we had anticipated and the fact that the weather wasn't great I was excited. Actually, thrilled, once  the forecast started showing rain I was devastated because I assumed it would be a blow out and no one would show. Well, it did rain, not horrible, but a steady drizzle yet we had pretty much everyone show up! I was amazed when people started showing up it also made me feel good because I know they were there to support me and MS.

Several people ask about the money, we don't need financial assistance right now so the money goes directly to the National MS Society Louisiana Chapter. The MS Society is a HUGE resource for people with MS, whether newly diagnosed or someone who has been living with it. I'll admit at first I didn't want to deal with it, but after coming to terms with the disease I agreed to at least go to the MS walk. Our first walk was in March 2011 and I really didn't expect much. Actually I only expected it to be my family and a few friends, but it turned out to be several friends. Well, the competitive nature in me had to go back the next year and do better. Now, we not only raise money for the society, but help with the walk! (Which the cutest t-shirt/team spirit was our idea...and we won!) Anyway, the money the society raises goes to a variety of places. They give some money to the MS programs in Louisiana, which is something I just recently learned but is amazing! Individuals who need help with medicine, tests, wheelchairs, or other assistant devices to make their lives easier can sometimes qualify for help from the society. Plus, nationally the society helps fund research studies/trials for MS.

Bridget and I are also going to volunteer at the 2012 Renaissance Party which is another fundraiser for MS. We wanted to see what it's all about, so we decided what better way than to volunteer to help for the event! That's in a few weeks so hopefully it'll be fun. Also, the MS Walk site should be up and running soon which means we'll get to start registering people to join our team! This year the MS Walk is February 23, which is earlier than usual, but hopefully we'll have good weather! It actually works out though since Easter is late and close to when the walk is usually held.

October has been a crazy month for so many reasons! The Botox injections I got in my back in July started to wear off, so that meant the pain come back. Then, if having the pain come back wasn't enough, the illnesses spreading like wild fire came to visit. So I was fighting that for a little over a week, and the cold weather didn't help me at all! It did throw off my appointment with the hematologist too because she's a hematologist/oncologist so we called and decided it would be best for me not to go since I was sick. I truly didn't want to get anyone else sick, especially someone whose immune system is weaker than mine. So in the next month or so I have to make that appointment again to check my iron, B12, vitamin D, and all my platelets, blood counts. Hopefully my iron is still good, it's been almost two years since I had to get iron infusions and that's not fun!

But, the past two days have been productive. Monday I went to the pain doctor and got more Botox. This time it was much easier, I'm not sure if it was because I was prepared or what but I had minimal flu-like symptoms. I made a point to take a little flu/cold medicine right after the Botox and then yesterday AM I took a little more to avoid it from getting worse. It takes a few days to fully take into effect, but we're in the right direction. Also, after talking to the doctor, he made a point to make sure my next Botox injection is in exactly 3 months which I'm very thankful about! Being the little girl that hated needles and would try to talk my way out of getting a shot/IV/anything with a needle (and sometimes being successful), I never thought I'd say this but during the Botox part of me wished I could do it myself! I guess after two years of giving myself shots daily (sometimes two a day), I like to be in control of it. Plus, I am the type that likes to go fast and get it over with. During the process the injection/needle didn't bother me but the Botox burns so I just wanted it to go super fast.

Yesterday I went to my neurologist, which was uneventful for the most part (which I'm NOT complaining about!). The main issue we discussed was my muscle spasms, tremors, spasticity in my hands and legs, which was good because before it was always pain. But, apparently tremors in the hands and muscle spasms in the legs are caused by the spinal lesions. They could be from the lesions I have in my C-spine (neck) which have been there since I was diagnosed with MS two years ago, or it could possibly be new lesions in the spine. She said that sometimes the spinal lesions cause spasticity to get worse over time even though there are no new lesions, which is good. Basically, all this just means they will look closely at the spine during my next MRI in January. Since it's been almost two years since I've had an MRI on my T-spine (upper back) they are going to do that in January as well. The first time they did the T-spine I didn't have any lesions which is good, but that was in March 2011. If there are no lesions on the t-spine this time she said she just wants to do the MRI every other year there.  This means that my MRI will probably be between 2-2.5 hours, but I guess we'll just grin and bear it because it was that or break it up to two days which may be worse since they use contrast which has to be given via IV (which even though it doesn't bother me as much, they still have issues finding veins so I'd rather just do that once).

Right now that's pretty much it except that I finally submitted my application to go back to school. Although, I took the easy way out and decided to just get an add-on certification instead of getting my masters. It is a lot faster and is 5 classes that all relate to special education rather than taking extra classes. Then, after that I can decide if I want to pursue a masters degree. Then, I can get my additional certification in special education and a masters in something else. So we will see what the future holds. I did get my way though, I only applied to LSU which is funny because when I started asking around about getting a special education certification EVERYONE said UNO was the only Louisiana college to offer it. Being the LSU alumni that I am and wanted to go back there I e-mailed the professor I had for the special education course I took and she gave me the information on who to contact. I actually had several conversations with that professor before any of the other universities replied.

"Be the heroine of your life, not the victim"~Nora Ephron

Multiple sclerosis is a very broad disease that can effect different people in entirely different ways. All multiple sclerosis means is "many scars (lesions)." In order to be given a diagnosis of MS the person usually has to have two separate isolated events where you experienced numbness, vision disturbances, and symptoms along those lines that last more than 24 hours. When I was diagnosed, as I said before it wasn't what then went in looking, I had only had one true relapse BUT the MRI scan showed several places on the brain are already having effects. I'm not sure if I've mentioned this already, but I have lesions in several different areas of the brain as well as on my cervical spine. The cervical spine lesions made me worry because some research has shown people who develop any spinal lesions early on may development more and farther down the spine.

Anyway, to get to the point I was going to make, because of MS I have a ton of random symptoms that seem to have nothing to do with one another. One of my biggest complaints is sleep or the lack of sleep. I have been up for just shy of 24 hours and even though my body is physically exhausted and all I want it to SLEEP it doesn't always work out. My brain just won't shut down. It's like the computer that has to reboot after updates are downloaded and the computer takes FOREVER to restart, that's my brain! The big issue though, I can't hold down a button and force my body to go into sleep mode. Basically it has become where I rarely fall asleep naturally, I have to take some type of sleep aide. There is only one over the counter medicine that helps me a little and other  than that I have to try different prescriptions. It usually takes me forever to fall asleep and then I'm LUCKY if I get 3-4 hours in a row. 

Although it seems as if I can't win because last Spring (2011), I was on so much medication that it caused severe fatigue so I was always sleeping. My neurologist would always ask how my sleep habits were and she was amazed at how much I slept. Just getting up to go to the doctor and come sucked the energy out of me. Then, we decided that it was time to for me to start weening myself off the medication because I had a bunch of negative side effects and it wasn't even helping me. The medicine was a seizure medicine, so I have to come off of it very slowly so I didn't have a seizure or develop withdrawal symptoms. Even though sleep has become harder for me to come by, I have to say I feel so much better than when I first started seeing my neurologist. 

I'm still looking for a job, I have sent e-mails/resumes to principals that I've heard may be looking to hire soon. Prior to Hurricane Isaac I had planned on taking the GRE this week sometime, but I feel like I still have a little more studying to do before I feel confident. Plus, I've been debating what I really want to go back to school for, special education, gifted, or look into getting a totally different bachelors degree. Since being diagnosed with MS, I have started really getting involved in volunteering as well as fundraising. I also find that I'm now in a good place and able to handle it better and try to get others involved as well. Right now I feel like my ideal job would be a patient advocate. 

I've been through so much over the past three years that I learned the hard way that you have to fight for yourself and stand up to doctors. It's the patients responsibility to make sure you get doctors to understand how you feel, no one knows your body better than you. Plus, I also learned before taking any new prescriptions it's a good idea to look into it and make sure it won't interfere with any other medicines. Again, that's something I learned the hard way because even though I disclosed ALL the medicines I was taking the doctor I was seeing gave me a different medicine that was similar to one I was already on and they should NOT have been taken together. 

It's also important as a patient to find doctors you're comfortable with and feel you can discuss practically anything. If you don't like your doctor it's totally okay to change doctors! I'm a firm believer in the fact that things happen for a reason and while I was going to the rheumatologist I was so overwhelmed. He diagnosed me with fibromyalgia and at the time I was so frustrated and the search for a new doctor wasn't easy at all, but it was the best decision I ever made. I was able to see a pain management doctor within two weeks of leaving the first doctor. Had I not  ended up with that pain doctor I have no idea how long I would have gone without knowing I had MS. He was the first doctor in a very long time to do a neurological exam that didn't go "normal." Don't get me wrong, it took me a long time to come to terms with MS and what it would mean for my future, but once I got over the initial shock and started reaching out to others with MS in their 20s/30s I came to peace with it. Once I went through a grieving type process I realized I have angels that take care of me the best they, I just need to stick with my instincts too because no one else knows what you're dealing with better than yourself. 

That's pretty much everything going on right now. That's another thing, while being proactive in finding a job I've also kept reminding myself that there is a job out there that's perfect for me, I just have to find it! Plus, not to sound negative or pessimistic, over the past 18 months I've been through so much had I had a job I would have missed a lot of days and that's not ideal as a new teacher. I feel like once people know I have MS, I have to work twice as hard so I don't come across lazy or uninterested. I know when I student taught I was always trying to go above and beyond so my mentor teacher didn't think I was lazy or unmotivated. 

Lastly, I have to say that over the past three years or so I've learned who my true friends are because they have stuck by my side. I hope all my friends and family know how much their support means to me! I have found that I am stronger than I thought, but there is NO WAY I would be in the place I am now without the love and support of my closest friends. I know that no one knows what it's like for me, even others who have MS because it is different for everyone. But, it's nice to just have people listen sometimes and not judge me. I saw something on Pinterest that said You don't lose friends, you just find out who your real friends are. It's so true, I have some amazing friends that are supportive and I've also made some new amazing friends through my journey! 

After a hurricane comes a rainbow

Hurricane Isaac was the first big hurricane that has effected us since I was diagnosed with MS. It was a tough week, but I survived it and didn't lose any shots! The medicine I take for MS can go a month without being refrigerated before it starts to go bad. BUT, that's at room temperature which is considered no warmer than 76*, which in south Louisiana is not always the case. Luckily, after Isaac hit it stayed relatively "cool" in our house. Then, by the time it warmed up my dad borrowed a generator so we could put the shots in the refrigerator. We are so lucky that the shots didn't go bad because I get 3 month supplies at a time. With insurance the shots are only $50, but if I had to get more without insurance it would cost around $15,000 and there are so many other things I'd rather spend that much money on! One good thing that came from this is that my dad finally decided we needed a generator because as of right now it doesn't seem like I'll be changing medicines anytime soon. 

The rest of the month will be pretty busy for us. This weekend coming we are going to celebrate Bridget's birthday, which I'm planning and I must say it's going to be a kick @$$ party!!! Then, the next weekend is Bridget's actual birthday and we will be tying up loose ends for our golf tournament. Our golf tournament is September 29, all the proceeds will be donated to the National MS Society, the New Orleans chapter. Last year our team raised over $5,500 which FAR exceeded my expectations. If anyone would like to donate/play in the tournament please let me know. 

Just a little information about  the MS society. The MS society funds research projects including new MS medicines, ways to treat symptoms, and so many other great projects. They are currently looking into ways to regenerate the nerves and damage caused by the disease. I recently found out that they also give money to neurologist that work specifically with MS. Since the neurologist I go to gets extra funding they are able to spend time with patients, and if I ever call their office I usually get a call back within a very short period of time. I much say I love my neurologist because she takes the extra step to do a thorough neurological exam each visit, she lets me know what's changed and what the changes mean. Plus, she awesome time management, I've never had a doctor who was so good with appointments. I usually get called back within minutes of getting into the office, talk to the nurse and we go through the usual questions, concerns, etc. Then, the doctor comes in and she takes her time and answers any/wall my questions. She even walked me through my MRI showing me where the different lesions where and which lesions were the cause of my relapses. 

Other than the hurricane and our busy September, on the health front is pretty low key. I have an appointment next week with the primary care doctor, so that should be fairly easy. I don't actually know the full point of going to the primary doctor because I have so many specialists that I usually look to them first (if I have a sinus infection I call the ENT). But, my neurologist sent me to them so I just go, I need to talk to her about sleep though. One horrible effect of MS is that I cannot sleep. When I mean I can't sleep I mean the other day I was up for about 36 hours straight because I couldn't shut my brain off. It's the worst feeling in the world because I am so physically, mentally, and emotionally drained/exhausted yet my brain won't shut down to let me sleep.  The other issue is I need to sleep in order to allow my body to rejuvenate, especially with my back pain rest is essential. I can definitely notice a difference during the day if I got a good night's sleep or a bad night's sleep. When I'm well rested I am able to do more in the morning. 

That's all I have for now. I can't/shouldn't really complain because I am very lucky. I know there are people who are worse off than me, but that's why I've become so active in the MS society. Right now I am able to organize fundraisers, participate in Walk MS, and other fundraisers throughout the year. I hope I never need assistance from the society, but they help people who need wheelchairs, walking aides, and other aides to help people with MS live as "normal" (whatever that is these days) of a life as possible. A recent statistic found that it costs on average $69,000 annually for people living with MS. Overall, it costs the US economy $28 billion dollars a year. So not only does MS affect the emotional, physical, and mental state of a person but also is a very expensive disease to live with. I am truly blessed that our health insurance provider is amazing, but with all the doctors' appointment and medicine I need it does add up, especially since I have so many doctors that I have to see fairly often. 

Shocking Facts about MS  

Back to School...Again

The schools around here went back last Monday, August 13. Since it was the first week of school there wasn't a huge need for subs. Plus, at the end of last week I had an episode where my blood pressure dropped tremendously when I'd stand and I'd almost black out. I'm not 100% of the cause, but it's gotten better, so hopefully it was only a one time thing. Either way, it would be HORRIBLE to happen in a classroom full of students. Hopefully I'll be able to start scheduling some days toward the end of this week/beginning of last week.

Right now since I'm not teaching or subbing as much as I'd like/should. So the other day during a minor pity party I decided to create a list of things I would like to accomplish before the beginning of the year. This have been my goals for awhile, but until recently they were not physically do able with the amount of bad days I was experiencing. In order to stay realistic I only came up with a few, but I'm still not 100% yet and experience days of great pain. Here is a list of my goals until the end of December:

1. Study for the GRE! I started studying last Spring, but I didn't stick with it. Then, this Spring I started from the beginning. I have gotten through a lot of the material that will be on the test, but I still have a ton of vocabulary and math cards I got to help me prepare. I don't want to walk in there and feel unprepared. This has been one of my work in progress goals, but I don't feel like I can confidently take the test and receive a respected score.

2. Schedule the GRE! While this seems easy enough, I keep putting it off. I need to decide where I want to take it, what time (either 7am or noon), and what date I want to schedule it. I'd prefer taking it at LSU because I am familiar with the campus and know where I'm going but it's a nice commute. Also, if I did choose to take it at LSU I'm guaranteed to hit rush hour traffic, either first thing in the morning or at night because it says the test ends near 5pm. UNO also offers the test, but I know nothing about that campus. So there are pros/cons with each testing taking site. I think I'm going to take it in the beginning/middle of September though.

3.Fill out the grad school application. Most of the universities allow you to work on the application online in stages. I've already started working on the general parts of the applications. Most applications are due sometime between October-December which is why I need to take the GRE in September because it takes 7-10 business days to get the scores. Plus, I am still looking into which University has the best plan to work for me right now.

4.Finally, I really need to get in and sub more in different schools. In the past I didn't sub that much because when I signed up they said once you commit to a job, if you have to cancel principals take notice. Once this happens three times you're out. I totally understand this rule and it makes total sense, but I was still having more bad than good days. When I can't predict how I'll feel from day to day makes committing to jobs VERY hard! I didn't want to give myself a bad reputation because of something like that. Since my last Botox injections I've been having several good days, but I'm still cautious jobs too far in advance. I'm looking nightly for jobs the next day. Plus, I have friends at various schools that said they'd let me know when substitute positions are open. One of my good friends is a para at one of the elementary schools so I told her I'd appreciate if she could give be a heads up if one of them are absent. Since I'm leaning toward my masters in special education it would be perfect to start working with those classes when I can!

The Month of Doctors Visits

I'm really bad at updating this blog, but I promise to try to get better. But, my old computer finally died. So now it's time to work on getting my mac! I have spent much of the summer convincing my dad (my mom was already on-board) we need a pool! Actually, a pool would be very beneficial for us, mostly me and my MS, but I'll get to that later!

Anyway, at the beginning of July I went to my pain management doctor. I was supposed to go at the end of June, but for some reason I was postponed (I think it had something to due with my insurance, but wasn't 100% sure about that). I got the botox injections, which was 20% more botox than the last time I had it done. The first week after the injections I was amazed!!! It helped A LOT, we made a trip to Gulfport to visit a good friend and went to the outlet mall. I was able to walk around most of the mall without hardly any pain. But, over the past few weeks the pain is slowly coming back. I think that was always my fear though, the botox lasts 3 months, but it doesn't just stop working over night. As it wears off the muscles become tighter. So, we'll see how it goes, my next Botox appointment will be at the end of October.

Then, I had my appointment with my neurologist. It wasn't a big appointment, just a general check-up because I haven't had an MRI or any other major tests since January. I went in assuming we'd just see how my neurological tests went and see if there was any changes. (For those who haven't been through the neurological tests, it's basically checking all my reflexes, timing how fast I walk, measuring sensation in my feet, my ability to move my hands/fingers/eyes, and small things like that). Anyway, my arm reflexes are fairly normal, but when they hit my knee my leg kicks up fairly high. This isn't anything new, BUT afterward my doctor mentioned that since I started seeing her (which was in February 2011), she has been seeing more and more patients with similar symptoms as me. She said some of my reflexes, walk times, and sensation tests are similar to those of someone who may have had spinal cord injuries. Then, she said she's pretty sure that my pain is coming from having very tight muscles. After feeling those in my back and my left leg they are both fairly tight. That diagnosis would make a lot of sense it also makes me hopeful that they get the right dosage of botox it would truly help!

It turns out that the appointment I felt would just be a general check up with information I already knew was pretty informative! Plus, it came up that I was working on getting a pool and she thinks it's a GREAT IDEA! Exercise is important with MS, but with the heat of the summer it's hard to do too much outside. For some unknown reason, heat makes MS symptoms intensified, so of course doing anything where I get too hot gets to be too much. It only took a few times getting overheated and feeling like crap to reevaluate going outside and getting overheated. But, a pool is the PERFECT answer! I can sit in the sun, which helps my back because the sun relaxes this muscles, BUT then before I get too hot I can get in the water and cool off. The pool doesn't just offer a way to cool off but also a good place to exercise. In the water there's no resistance so it makes exercise easier and less painful. Anyway, with some convincing and making a few deals (which if you know me, you know I am always trying to make a deal!!!) I think I've gotten my dad as excited as I am!!!

Then I went to the hematologist/oncologist, which it turns out that most oncologist are hematologist. I have been going to her since about the same time I switched neurologist because my blood work came back SUPER bad! Anyway, she checks virtually everything including my vitamin D, vitamin b12, and iron. Luckily, my iron has been fairly stable so I don't have to have infusions yet. It's still on the low side, maybe even a little below the "safe" zone, but iron pills are very hard to take/digest without a bunch of side effects. My vitamin b12 has been low since day 1, but we have decided that I have to start doing injections twice a month. Over the past year and a half I have been one various vitamin b12 regimens from daily, to weekly, to monthly, and then twice monthly, and back to monthly. It turns out that in order to keep my levels up I have to do it at least twice a month! It sucks, but I do it myself so twice a month I take two injections instead of just one.

The best news of all is that I'm graduating from seeing doctors every 4-6 weeks, to every 2-3 months, and now I go every 3-4 months with most of my doctors! I know for most people going that often seems unheard of, but in the Spring of 2011 I was going to the doctor almost every week, different doctors, but doctors none the less. Even though I know I didn't do too much, I feel accomplished only going to see them 3-4 months. The main issue is the doctors I see the most often all fall in the same time period so in October/November I'll get to do this all over again.

Two Years and Counting....

It's been two years since the doctor first mentioned that I had MS. Multiple Sclerosis was never one of the diagnosis I had discussed with the doctors, so it definitely came as a shock when the MRI results came back. It was July 8, 2010, it's a day I remember all too well. Bridget and I were coming home from Destin with some friends and I knew the doctor was supposed to call with the test results. I kept texting my mom asking if he had called, and she kept delaying me with no, not yet, or I called, but they haven't called back. Then, I called to let her know we'd be at our friends house in about an hour so she would come pick us up. Of course I asked again, but on the phone she's not as good of a liar and I could sense that something was wrong. I'm pretty sure that was the longest hour, at that time I was worried I had a chiari malformation.

When I was in the doctor's office that's what we had discussed. Based on prior blood work that ruled out lupus, lyme disease, and a number of other diseases and my neurological exam he sensed that there was an issue. So I had of course googled that and looked into the symptoms and treatments. I'm sure that diagnosis isn't wouldn't have been any easier to handle, but at the time I had researched it and was familiar with that. The MS diagnosis was something that came out of the blue and was never mentioned to me by any other doctor. Well, I take that back, the doctor who ordered the MRI did put MS as the reason for the MRI, but as he handed me the prescription he said he was fairly certain I didn't have MS. Apparently from his perspective I wasn't experiencing those symptoms.

Anyway, once we were at our friends house I was pacing outside waiting for my mom to come get us. We put all our bags into the car and my heart was pounding as I waited to get in the car. Once I got to the car Snuggles immediately gave me kisses and was being so sweet, I'm sure he sensed my anxiety. And that's when she finally said that the doctor was pretty sure I had MS and I had an appointment with a neurologist the following Wednesday. But, by the time we got home the neurologist's office called and said they could fit me in the next afternoon. It was another month before the diagnosis was "official" and I started taking medicine to prevent (or help) more relapses.

It's amazing how in that moment everything changed. Pretty much everyone has experienced numbness, your hands/feet go to sleep, at some point. Which, until I was diagnosed with MS I thought nothing of it. Actually, there are several symptoms I never thought much of until the MS diagnosis. But, now anytime something is out of the ordinary or my hands/feet go numb I look at the clock to see what time it is. Then, I try to work it out. Anytime it take something goes numb I become anxious because it could be a relapse.

The first relapse I had was actually nearly five years ago when the right side of my body went numb. That lasted about a week before it finally subsided. Since then my other relapse was with the nerves affecting my hearing which also lasted about a week, but was more frustrating because all the sudden the ringing in my ears was so intense I couldn't hear much. Anyway, that has been awhile. Then the morning we left for Florida my right hand was numb when I woke up. Usually I don't let get to me, and it usually comes back within 30 minutes. But, as we were packing the car I was trying any/all the tricks I usually do to help my hands gain sensation. It was nearly 5 hours before the feeling was finally back in my hand. (To be considered a relapse it usually lasts at least 24 hours). Even though it wasn't a true relapse, it still makes me worry anytime something is abnormal.

It's funny how something so little that nearly everyone experiences can cause so much anxiety. Once I learned more about MS and the symptoms I was able to find a specialist in the New Orleans area and have learned to tell her even the smallest details. I was amazed how a lot of the symptoms I was experiencing could be traced back to MS. Most of them I had ignored thinking it was "normal" or that I needed more potassium since I was experiencing muscle spasms often.

The past two years have changed me a lot. It was definitely a shock and took time to adjust to the diagnosis and what it meant. When I was first diagnosed I knew very little about MS, I just knew of one person who had MS. She was diagnosed before all the medicines were available. Now MS is treatable, not curable, but with all the research I'm sure it'll come sometime in the future, hopefully sooner rather than later.

MS Walk 2012 Pictures

I know this is late, but here are the pictures from the MS Walk 2012. I'm very grateful for everyone who attended or supported me in any way, shape, or form over the past two years. When it was all said and done we raised over $5,500! I am super proud of our team.