Pretty in Pink

I usually write about my struggles with MS and how it's affected and changed my life over the past four years. While multiple sclerosis is a major health issue I deal with from day to day, but I'm "lucky" in a very unlucky way.

October is one of my favorite times of the year, but not because of halloween like most people. October is breast cancer awareness month and as someone who has a slight obsession with pink, I get excited about all the products that come in pink. Over the years I've collected quite a lot of pink items during October like pink knives set, a pink coffee pot, pink/black Northface jacket, and so much more!

Until four years ago, I supported breast cancer awareness because of all things pink. But, after a CT-scan of my abdomen showed a shadow it changed. The radiologist really felt that the shadow needed to be checked out so I underwent a sonogram of my right breast looking for any masses. Prior to having the ultrasound so many people told me it was nothing and not to worry. 

I really wasn't worried about the ultrasound, I was actually glad I didn't have to have a mammogram. The technician did the ultrasound and left the room for about 10-15 minutes. I was feeling like I was in the clear because she didn't measure anything. But, then she came back and went to a specific area, where she started measuring. 

I can't read ultrasounds, but I had enough knowledge to know there wasn't anything she should be measuring in my breast. At that point my heart sank because I knew they saw something on the ultrasound and the shadow they saw on the CT scan was that mass.

Again, she left the room and said she'd be back in a few minutes. This time it seemed she was out of the room for a very long time. Then, all the sudden several people came in the room. The technician, nurses, and the radiologist all came in the room. 

The radiologist proceed to tell me that she was very worried about the mass because of it's shape. She also said it would need to be biopsied but she didn't feel comfortable doing it because it was so deep. There was only one other radiologist that could do the biopsy and he was only at the hospital on Tuesdays and Thursdays. 

Oddly enough, I was overly calm and numb over the situation. I scheduled the biopsy and prayed a lot. The day of the biopsy I was very nervous and anxious. 

The nurse took me into the room and talked me through what would happen. I was told they would give me lidocaine shots and they would use the ultrasound to guide the biopsy. The radiologist would take between 6-8 samples of the tissue mass.

I'm usually a huge fan of lidocaine, but when injected in the breast it was extremely painful. Then, I could feel the needle going in, but I didn't say anything because I wasn't sure what was worse -- more lidocaine or just praying for it to me over. Since it was so deep, the radiologist had a difficult time getting the needle to the area. After taking 2 samples he decided that was all he was going to get because the risks were high for a punctured lung or other complication. 

The worst part of the ordeal was waiting for the results. While I waited I prayed a lot and asked my guardian angels to watch over me. Then, I finally got the results and it wasn't cancer! That was the best news I could have ever asked to hear. 

I don't think I could have handled cancer and multiple sclerosis. It took me awhile to come to terms with the MS diagnosis, I appeared to be okay but when I was alone I was still struggling with that. I have dealt with several health issues throughout my life, but I really struggled with MS the most. 

My "new" normal....

If there's one thing I've learned about MS over the years it's that multiple sclerosis is unpredictable! I never know if I'll wake up with half my body numb or maybe today is the day the symptoms will get better. Despite the diagnosis of relapsing remitting MS, I've found that after each relapse my body doesn't bounce back to exactly where it was before the relapse. 

The worst relapse I had was probably the one that came on Christmas day 2013 after being in the hospital with a spinal hematoma for a week after Thanksgiving. That relapse lasted two months even after I did the three day dose of high steroids and physical therapy. To make matters worse, my right arm was completely paralyzed I could only move my hand which being right handed dominated made it even harder. 

Unfortunately, since then I have had several mornings when I woke up to find my arm paralyzed. It has happened 4-5 times since I got full use of my arm back in mid-February. The paralysis also struck  my left arm but since it didn't lasts for 24 hours some of the time there wasn't much I could do.  

Before something that be considered a relapse the symptom has to be constant for 24 hours. The first 24 hours are always full of anxiety and makes me nervous. Since mid-February every time I had an issue the first thing I did was check the clock. 

It became unusual because I started getting MS symptoms along with coughing up mucus. I was fairly certain that the mucus was infected, but I wasn't having a runny nose nor was it bronchitis. The first two times right when I was going to make an appointment with my ENT and the cough along with the mucus was gone. The first time not only was my arm paralyzed, but there was shooting pain from my neck down my arm if I moved a certain way. 

I had gone for blood work (normal labs I already had scheduled to check my CBC and iron levels) the day the pain got worse and my hematologist was concerned that my white blood cell count was high. After telling the hematologist about the random coughing events, she ordered the blood work to be redone and an x-ray to check my lungs but the other tests results (5 days after the first blood work). 

My arm slowly got better, but it was slow progress. I had talked to my doctor about high dose steroids, which is pretty much the only "treatment" for MS, but I wasn't fired up about taking them again. Steroids can be great, but there are also many dangers you have to be aware of when making a decision. As long as I was getting better I was okay without steroids I was okay with it.

A month or so passed and then MS hit me hard! I had gotten up in the middle of the night and realized my leg was weak and I couldn't walk without assistance. From that moment I was in shear panic mode! I realized I couldn't walk to get a glass of water (which was my attempt at  getting up), luckily I found water close to my bed so I didn't have to wake anyone up. The next morning (a Sunday thank goodness!) I realized that I hadn't gotten strength in my leg yet so I called our house phone from my cell. 

I was terrified, filled with anxiety, and calmly asking my mom to come help me. At first she didn't understand why I needed help,  so as calmly as I could I explained to her that my leg was weak. Luckily we had crutches from a knee surgery I had years ago, but I still made a request that took every part of me to ask: I asked my mom if should could go to CVS and get a cane. Of course she said she would, it still killed me because I'm 26 years old and shouldn't need a cane. But, we both knew it would make it easier to get around. 

The week progressed and I developed more MS symptoms. My left arm was paralyzed, my left leg was weak, the right leg was numb and the cough was back. This time the cough and infected mucus was back fast. I also called my neurologist who offered IV steroids, but I have horrible veins. The week this happened was my last iron infusion, which took more than one IV to get it in. 

My neurologist was also out of town, so I talked to the nurse who did say I could have steroids if it was something I wanted to try. I pushed it back, but finally went to the ENT about my cough. It turns out I had an upper respitory infection, but it hadn't turned into bronchitis. I was given antibiotics for two weeks, once I told the nurse that she said it would be a good to take the antibiotics for at least the weekend and then reevaluate if I still needed steroids.

I am so lucky!!! I took the five doses of the antibiotics and I was already starting to feel better. While I was still experiencing symptoms they were slowly going away. So now, my I had to worry about the 24 hr rule AND that a small infection can cause an array of MS symptoms. 

The more I "know" about this disease the more I don't get how it all works. I have had two brain MRIs this year (in January and July), but neither one showed an active lesion in the area that one "should" have been with the issues I've been having with my arm(s). The MRI I have in January was during my relapse with my arm, but there was not a lesion in the area. However, at that appointment I remember the doctor telling me that I was obviously in a relapse because I couldn't move my arm. Right now it just adds to my confusion and I have a "new" normal that includes my arm issues. 

No matter what happens this little guy will always have my back. He doesn't care if I have to use a cane, a wheel chair, etc. Snuggles is always with me and he's what keeps me going when I'm having bad days.

Gotta have Hope

Since being diagnosed with multiple sclerosis, I've turned to God a lot. In my darkest days, the days the pain was so intense I pray. I know that there is a reason I have MS and that God has a purpose for me and that He'll be there to help me. God gives me the hope that I need to continue this fight, hope is a powerful thing and once it's lost there won't be a reason to fight. It's the smallest amount of hope that keeps me going sometimes, but I always have some hope. 

That being said, lately I think my prayers are getting lost in translation, plus I need to make a conscious effort to be careful what I say. Every time my right arm has given me problems since my last relapse (December) I've said I wish it was my left arm. Well, this morning I woke up and my left arm is completely numb and I'm unable to move it. This is exactly how it started with my right arm in December, now I am praying that it goes away on its own and I don't have to take steroids. 

Unfortunately my right foot is also numb and swollen. Sunday morning I woke up and tried to get out of bed and realized my right leg was numb. I was unable to walk unassisted, which has never happened to me before. I've had numbness in my right leg before, but never like this. The numbness in my right leg is numb where I can't feel it at all, which thus makes walking very hard. Sunday even when I had crutches to help give me support, I accidentally twisted my ankle when walking. Luckily besides the pain right away it didn't cause any other issues, but I had to be super careful when walking from one place to another. 

This is how I feel today!

Until being diagnosed with MS I never knew there could be so many definitions of the word numb. Before MS I defined numb as the tingling, pins and needles feeling when my foot or hand fell asleep and was starting to wake up. Now, after living with MS for over 4 years numbness means so many things. Of course, I still use it to mean that pins and needles feeling when the blood flow starts coming back to my hands/feet. It also means not being able to feel anything at all, like my right foot. Also, I have numbness where you can't really feel what's going on from the inside, but when I touch the area from the outside then I feel the tingling feeling. For example, my left arm is numb and I don't feel anything until I touch it with my right hand. When my right hand touches my left arm I get a tingling sensation, which I consider a type of numbness. 

Since being diagnosed with MS a lot has changed, not just my vocabulary but also my passions. Finding out that I had MS was very difficult in the beginning, but now that I've come to terms with this disease I've also become passionate about MS awareness. It started off with joining the MS Walk committee and raising money for MS. Then, last fall I started my mission with our speciality license plate for MS which passed!!! (It is in the process of being designed then it'll be sent to marketing and then out to the public. No worries, I'll definitely announce that!)

Through everything, I still have hope. In my darkest hours, the hope was still there. I think my work with MS and the MS Society has helped me too, it has given me hope too. Sometimes I wonder if God gave me MS because He knows I'm fierce and fight for things I want. It started when I was little, I'd convince my dad I needed things (like Snuggles, my beetle, my pool, a bigger bed, etc). I know the things I convinced my dad I needed were materialistic, but it helped prepare me for this journey. I'm now fighting for MS awareness and legislation that will help others with MS not just me. 

Life with MS

I mentioned in my last post about my bum arm, well my doctor fit me in yesterday to see me and there were more questions by the time we left her office. Here's the situation: my right upper arm is weak and for whatever reason I cannot control it like I should be able to. This happened in December,  but I was unable to move my right arm at all! This time I can move from my elbow to my wrist and to make matters worse I'm having sharp pains going down my arm from my shoulder/neck. The pain medicine I'm on for my back pain should help with this pain too, but it's not so that's scary!

During my appointment Tuesday with my neurologist she watched me walk, looked at my eyes, checked my reflexes, and a few other fun things they do during a neurology exam. Then, she said this wasn't "textbook" MS and she's wondering if it's related to my MS at all. Since it's such a specific place and nothing else has been affected it could be a pinched nerve, an infection, or nerve damage. If it were due to MS it would probably affect a larger area because the brain and spinal cord control all the nerves in the body so when there's a lesion it affects several areas because the nerves are bundled.

I go for an MRI Friday afternoon of just my neck to see if I have an active lesion. If it is MS she said it would have to be a nerve in the spinal cord. I do have lesions in my c-spine (the neck), so from my research I could have more lesions in the spinal cord. Either way, it doesn't really change how they are going to handle the situation because there's not much they can do. The main treatment IF it is MS would be steroids, but I did the 3 day steroid treatment in late December and would rather not take that route if I don't have to.

All I can say is welcome to my life, I'm the one who is the difficult patient. I'm the patient that is in the small percentages. Turns out (I learned after the fact) that 3% of patients who get the spinal cord stimulator trials have bleeding once it's removed, yes 3% so I fall in that category! My doctor told me later that I was only his 2nd patient to have this problem and he does trials all the time. I always say I'm only lucky when it comes to bad things. Can I win the lottery or be in 3% who score big at the casino.... of course not! But, this is my life so it could be MS or it could be something else with my arm, only time will tell.

I'm not sure what lesson I'm supposed to be learning BUT since I've been diagnosed with MS I've become more patient, learned that God listens to our prayers, and that I pray most when things are bad and I need that little ray of hope. I always get a sign, my little ray of hope at the right time, but it doesn't mean it's easy. I've learned a lot about myself since getting sick and I've learned to be careful when I pray, this journey is definitely an obstacle course and I'm not in control. So for now I will just try to go with the flow and do the best I can with what I'm given.

But, no matter what happens at the end of the day I have the cutest little boy who absolutely loves me and gives the sweetest kisses! He hates wearing clothes, but this morning he let me put this super cute shirt on him that I just ordered from Ralph Lauren. Yes it's pink, BUT it's for the MS walk he needs something pink/green to show his support!

Snuggles Alexander Summers 

Summertime Woes & Worries

This month marks 4 years since I was diagnosed with MS and in October it'll will have be 7 years since my first clinical isolated syndrome, but was misdiagnosed as pinched nerves and carpal tunnel. Over the past 4 years so much as changed, my life has taken a new path. When I was newly diagnosed I got caught up in all the negative emotions that come with any disease. That wasn't never a good place to be because it wasn't helping anything and probably made some things worse. 

One of the biggest issues I have is dealing with the summer heat. Since I was little I always loved summer because it's a more relaxed time and beach vacations are always on the top of the list! Some of my favorite childhood memories are from different activities we did during the summer. But, the year I was diagnosed with MS I never knew it would completely change my favorite time of the year. 

People with multiple sclerosis have problems when it comes to heat. When I get overheated that's when I have an MS flair up, but in order for it to be considered a true relapse the symptoms must last over 24 hours. The last few summers haven't been really bad, usually it consisted of numbness in my hands, arms, legs, or feet. For many summers the main time I'd have numbness was when we traveled, because it's hard to keep the car at a temperature where I can stay cool. 

I'm not sure why, but this summer as been really hard on me with the heat. Plus, the heat intolerance episodes this summer have been more serious than having a numb hand or foot. Since my last relapse that decided to come for Christmas, my right arm has continually given me problems. The initial relapse paralyzed my right arm (it seemed stuck to my right side), I was only able to move my hand. As time went on I was able to move my arm from my hand to my elbow, it eventually took 12 sessions of occupational therapy and over two months to totally regain the strength in my arm. 

Unfortunately more and more I wake up unable to use my right arm or have limited usage. This has to be one of the worst parts of MS, going through heat intolerance is always nerve wrecking. This morning was one of those days I woke up to find my arm was very weak and then I couldn't stop coughing. Right now I have to be hopeful that this is heat related and that tonight or tomorrow morning I'll be able to use my arm like usual. As I try to stay positive and convince myself that it'll get better in the back of my mind I always wonder if this time will last longer. 

Through my relapses and other issues with symptoms of MS, I've learned about myself and it has changed my life. I'm not saying that MS made me a different person, but I have learned to live for the here and now. Today, I woke up frustrated because of my arm so I knew it had to be a low key day. Days when I feel great I've learned to seize the moment and take advantage of those days, probably too much. 

While I usually don't think of MS as a "gift" I will say it's changed me; I don't stress over the small things that don't mean anything and I spend my time wisely. Since I have good days and bad days, I try to do whatever I can. I have become so involved with the MS Society volunteering at different events, I serve on the MS Walk committee, and this year I became a MS advocate. Due to my amazing parents and crappy immune system I'm able to continue my education while spending my "free" time doing whatever I can for the National MS Society. 

If you had told me 4 years ago what I'd be doing today I wouldn't believe it! At first I wanted nothing to do with MS, it was something I only told people on a need to know bases. I have grown a lot since them and now I tell anyone and everyone about MS. My family even helps hosts a golf tournament to support the National MS Society and this year will be our 4th annual tournament. 

Be careful what you wish for......

When I was little I wished and asked for so many things and was told to be careful what I wished for. At the time I had no idea why it was such a big deal because I never wished for anything bad. I wanted normal things like a puppy, at one point I wanted a baby brother or sister (but later realized that wasn't something good to wish for, being the "baby" of the family suites me well), and a list of other things.

Over time I've gotten pretty much everything I could have wanted more, but with the good came the bad. Now in my twenties I know why making wishes can sometimes end up completely different than you plan. If someone would have told me when I was younger that I'd eventually get a puppy, the VW beetle I wanted since I saw them, not being forced to live in a dorm my freshman year of college, and so much more I'd have think I would have hit jackpot. Unfortunately it came with so much more, things I'd never imagine or wish on anyone.

One of my biggest "wishes" was getting my masters. I remind my senior year of high school and freshman year of college my dad and I had several conversations about college. It always ended the same, no matter how hard I tried and how much I tried to work my magic (which had worked for me several times in the past) about getting my masters. His response was always the same, they would pay for me to get my bachelors but anything more I would have to pay for. Really, I was lucky they paid my way through college, while I had a few part-time jobs it wasn't nearly enough to pay for anything.

By the time I started my sophomore year of college I gave up on the fight, it was clear this was one thing I wouldn't win or so I thought. I went through the rest of my college career and was slowly having more health issues so getting my masters was really the last thing on my mind. 

The summer before my last semester (student teaching) of college I was diagnosed with MS. My last semester there were days I thought I wouldn't finish my degree because I was in pain, on so much medicine, and was so fatigued I mostly went to school and slept. The day I graduated (which happened to be my 23rd birthday) was the best day ever because I made it and there were days we didn't know if I would. 

After I graduated things went down hill and that's finally when I found a new doctor and slowly weaned myself off the medicines that weren't working. It was definitely hard, getting a job wasn't even an option at that time because I was going to the doctor so much. It turned out I had more issues than just MS so I slowly added new doctors over a six month period and had so many tests run from blood work, x-rays, MRIs, and so many others. I probably saw some of those doctors in that six month period than they saw of their own families. 

That summer I was finally turning the corner, I was getting the support from the doctors that I needed. These doctors were listening to me and validating my complaints, I wasn't told that my symptoms weren't MS related or that I doctor wouldn't treat me because I had MS! Believe it or not, those living with MS can actually have other health issues which my previous doctors never looked into. 

Once I started feeling better I went to Barnes and Nobles and got a GRE study book. For the first time in about 3-4 years I started thinking about getting my masters again. This time when my dad and I talked about getting my masters he said I should continue going to school until I felt well enough to get a job. This is exactly what I had wanted for so long. 

I had know when I was 17 or 18 years old that getting my wish would come with MS and years of chronic pain I definitely wouldn't have pushed so hard for it. I'd trade everything to be pain free and have a job, even one that I didn't like. It's been a very tough 4 years there have been many highs and lows, but I feel like I'm at a point that is better than it was 4 years ago. 

I'm finally in a place where I have some great doctors who are creative with treatment. I get botox in my back every 3 months, go to a pain management doctor monthly, and I've had countless procedures in hopes that one day I can have a job and be pain free, or at least less pain. 

I started working on my special education certification first because that was only five classes. I still have one left, but after everything that happened at the end of last year and the beginning of this year I needed to take time to get healthy again, plus the class I needed got cancelled due to lack of enrollment. I guess they weren't all about having a class for one person, although last semester I was in classes that only had 4 or 5 people. While the need for special education teachers has probably gotten higher, there aren't many people getting their certifications. 

Better late than never?!?!

Update on "My" MS license plate bill:

Wednesday night (May 14) I got an e-mail that the MS license plate bill passed in the House 87-0, so now it awaits Governor Jindal's signature and then we can start taking orders!!! I was really excited, it's something I've been working on and researching last summer. I didn't really mention it to anyone, besides convincing the members at the MS Society that I already had it taken care ;). 

Also, another big piece of legislation this session for the MS society was the MS tax check-off is also waiting for Governor Jindal's signature, although if it hasn't been vetoed or signed by Sunday it'll automatically go into effect. This had to be renewed because it was original passed under the Louisiana Chapter of the National MS Society, in recent years the society has gone more regional. Since technically it's not the same it had to be renamed, but nothing else changes. The money from the tax check off will still stay in Louisiana. 

I had some amazing teachers throughout the years, but I've definitely learned more about government in the past few months than I ever did in school. During one of my first visits to the capitol, when I actually meet Senator Gary Smith, my dad came with me and he LOVED it. At one point he told me he should run for office because he could totally do that, which I'm sure he could.

I had to do that little update first, because becoming an MS advocate is something I can do right now. a BIG reason I'm able to spend the time being an MS advocate, being a part of the MS Walk committee, and fundraising for MS is because my parents are very supportive! I know I'm a week late on mother's day, but I did want to write about how amazing BOTH my parents are. 

Happy Mother's Day and Father's Day (I'm a little late and a little early)

Since I was a baby, I've always been the "sick" one. Until I was about 12 or 13 I had chronic ear infections, at some points I saw my ENT more than I think his family did. When I was 6 years old it was my mom who fought to get me a home health nurse instead of going to the hospital because I had to get a hep-lock after fighting an ear infection for 6 months. The hep-lock had to stay in for about 2 weeks and my mom learned how to give me the medicine so I could spend Christmas at home with my family instead of having to spend Christmas at the hospital. 

When I was about 15, my mom completely believed me when I started having intense pain with my period. She didn't just tell me to suck it up, she forced me to go to the doctor. A month before my 16th birthday I was officially diagnosed with endometriosis, which got very intense while I was in high school. Both of my parents were supportive through all the surgeries I had for endo. My dad even, during a moment of weakness, agreed to letting me get a puppy the summer between my sophomore and junior year of high school. 

Finally, as I entered my 20s I thought my life was finally getting better. The ear infections were a distant memory, the endo pain had finally gotten better after several surgeries, one that I regretted every day during the summer of 2008. Once I recovered from the last surgery I was finally feeling better and my life was going great! 

It wasn't until the fall of 2009 that I started having pain, but this wasn't my usual pain it was in my upper back. The pain come on slowly, I would have really bad upper back pain and then it would go away. As long as the pain continued to go away I was okay, I could handle that but it was when the pain started to linger that I couldn't handle it. 

For starters, I was told I had gallstones and needed to have my gallbladder out. The GI doctor was convinced that was the cause of my back pain, but I still wasn't convinced that it as all due to my gallbladder. I feel like that was just a lucky guess, either way I did have it taken out and still had back pain.

My mom came with me to all the doctors appointments and supported me. In the spring of 2010, I was diagnosed with fibromyalgia. After going to this doctor for about six months he finally started yelling at me and telling me it was "my generation," we couldn't tolerate medicine. It was my mom who stood there and raised her voice at him that maybe if he'd have actually helped me any I would feel better. We both left the doctor that day knowing there was NO WAY either one of us would EVER step foot in that doctor's office again! 

But, that was a blessing in disguise I just didn't know it at the time. At the time I was furious and still in pain, but my mom was there to support me and never once entertained the idea that I was crazy and it was all in my head (at least she didn't out loud!). I found a new doctor and again she was there to support me and try to convince the doctors that something was wrong. 

Two weeks after seeing that new doctor, my mom got the call from the doctor that I actually had MS. Bridget and I were on our way home from the beach with friends so my mom was picking us up from one of their houses. I can't imagine how hard it was for my mom, I know I HATE when something is wrong with Snuggles, but when I called her to tell her we were close I asked if the doctor called she told me we'd talk when she picked us up. I knew in that moment something was wrong, my mom isn't the best liar and I usually pick it up but saying we'll talk later that was a BAD sign.

When we got home, my dad was already home because my mom called to tell him and I remember just holding Snuggles and going to my room sobbing. I felt my mom sit next to me telling me we'd get through it and I looked up to see my dad and sister in the doorway. 

Since then my parents have both always been supportive, both finically and emotionally. After graduating from LSU and moving back home (6 months after my diagnosis), my mom and dad realized how bad everything really was. I was on such a high dose of anti-seizure medicine that I slept roughly 75-80% of the time. After going to my ENT (the one mentioned above who has be the best doctor, he's taken care of me since I was 3 and referred me to countless doctors when the ones I have aren't helping) for a sinus infection, I was at my breaking point and he could see it. That's when he told me I needed to find an MS specialists and he was pretty sure there were some in the New Orleans area. 

In all honesty, I don't know why it never occurred to me but once I got home I went to the internet. During my search one of the first doctors to come up was at the Mayo Clinic in Minnesota, so my dad said if we went there he'd contact the people who worked at the same company he did (at the time) in the area. But, during further searches I found a great neurologist in New Orleans who happened to just be coming of maternity so I was able to get an appointment within 6 weeks. 

My dad hasn't come to many doctor's appointments over the years, if he did we would have been in bad shape, anyway the first time I went to my current neurologist it was the three of us. I was nervous, even though I already knew I had MS my previous neurologist had told me MS wasn't a pain disease and that most of my symptoms weren't related to MS. Even though I was nervous it did help have my two biggest supporters there, to ask the right questions. 

Throughout all of my different alignments there as been a great deal of stress. With the diagnosis of MS came VERY expensive drugs, the person I talked to told me my copay would be 20% of the total cost. I was on Copaxone which is about $5,000 a month!!! As I was crunching the numbers in my head I was sure I'd have a heartache, but my dad just kept saying it is what it is, we'll make it work. Luckily, the first guy was wrong and my copay was $50 for a 3 months supply. They really shouldn't do that to people, seriously I know I'm not the only one who freaked out! 

Having MS is very expensive, more expensive than so many other chronic diseases. I remember student teaching and looking for jobs, I was so overwhelmed because I knew I needed health insurance and money to pay for everything. There were so many times I cried on the phone or anytime we talked about post graduate life, my dad assured me that no matter what they'd always be here for me in any way. 

It's been nearly 4 years and my parents are both SUPER supportive! When we started doing the MS walk my dad jumped in and said let's plan a golf tournament, this September will be our 4th ANNUAL golf tournament! Over the last four years our team has raised over $20,000! 

Plus, I've still be dealing with the pain, the pain that never truly left. My mom and dad have said they would do whatever humanly possible to help me, especially with the pain. That's why we have this amazing pool (that I've wanted since I was little!), it was referred to as "Tara's pool," during the entire planning and construction phase. It wasn't until AFTER my dad got in it for the first time last summer that it became HIS pool! Either way, the pool is great for all of us and during the summer it helps my back without getting me too hot causing MS symptoms to appear.

Our pool, yes it's pretty big, my dad never actually went outside with a measuring tape, he used his feet and  estimated!

This year when I registered to become an MS advocate both my mom and dad were excited for me. Plus my dad came with me one time and my sister took off two days to come to the capitol with me! My mom would have come, except she has taken several days off school to be with me. 

When I went in the hospital on Black Friday it was my mom that finally made me go after continually getting worse from Tuesday morning until Friday afternoon. She waited with me in the ER while they ordered tests, gave me fluids, gave me pain meds, we waited for the anesthesiologist, and then we waited for the on call radiologist so I could get an MRI. We were in the Ochsner Kenner ER for about   5 hours or so. My sister dropped my dad off when we found out I had to be transferred to main campus Ochsner, my mom and I went via ambulance (NOT by choice) and my dad followed us. Then, my mom stayed at my side for FIVE nights sleeping on a couch-ish "bed." I felt so bad, I knew she wasn't comfortable and I told her I'd be okay if she wanted to go but she insisted on staying, and I'm not going to lie I liked having her with me.

My mom did come home Saturday to get both our medicines and some extra clothes, meanwhile my dad and I were at the hospital. Sunday my dad and sister came to spend time with us. Once the work week started my dad came to visit us for lunch and bring my mom something to eat. I know those days we spent in the hospital weren't easy for any of us, I kept telling my mom she could come home but she kept saying she wanted to be with me. I'm sure everyone knows when you're sick, especially in the hospital it's nice to have loved ones around. 

I know this post is ALL OVER the place, but I'm where I am because of my parents. They have been there for me in good times and bad. They've seen me at my absolute worst, when I was on the verge of giving up but they wouldn't let me. I think I even told my mom once I can't do this anymore because it is HARD handling pain all day and having doctors write you off. BUT, now I'm in a better place because we've found some of the best doctors. 

If I hadn't had both of my parents there I don't know if some of the doctors would have realized how bad things were. Even though I'm in my 20s, my mom has fought for me a lot, she deserves more than just a day. My dad also supports me, he supports me in different ways but at the end of the day I know both of them are there for me and will help me fight this crappy disease! I don't know that I've expressed it enough, but when I was diagnosed with MS it affected our entire family. I may be the one physically fighting it, but I'm sure it's hard for them watching me go through this and worrying about my health.

My amazing family. My mom, dad, Bridget, Snuggles (who wasn't interested in our photo booth that was AMAZING), and me! God knew exactly what he was doing when he picked my parents, my mom has always fought for me and my dad is always supporting from the sidelines (and in some cases front and center).

3 Down 1 to Go

April has been a busy month with doctors appointments, trips to the capitol, and of course Easter. April 15-16 Bridget and I attended Louisiana Public Policy Conference as part of the government relations committee with the National MS Society. It was definitely a positive experience and being someone living with MS made a bigger impact on the legislators than some of the other members giving facts/figures.

The first day it was a small group of us, so they tried to break us into groups having at least one person who had been before with new members. They also tried to have one person living with MS with each group. I planned to sit back and observe the first day so I'd be prepared for the second day. For as long as I can remember I've been very observant, it's something that comes natural to me and in some situations you can learn a lot by taking a step back and watching everything that's going on. 

We were standing outside the senate meeting (I think it was the senate) there was a group of four of us and we had folders that had information on MS, along with the different bills the National MS Society was supporting. The lady in our group had given the senator the folder and was telling him about MS and the bills. While she was talking, I don't remember what she said but I remember telling him that I had been diagnosed with MS 3.5 years ago. 

Then, without really thinking about I added that my first symptom was 3 years before I was diagnosed and early diagnosis is important because between my first episode and being diagnosed I developed several lesions. A big issue with MS treatment is that it's only proactive not retroactive, therefore all the lesions I have that cause symptoms I have to deal with until there's a new treatment. 

I just said what I said before I really said it, but it was amazing. At first he had been looking at all four of us, but at that moment he was keeping eye contact with me. Apparently the others noticed it too, the lady mentioned that she thinks he may not remember much from what he heard but he'll probably remember me and those words. 

I think that since people think I'm younger than I am when I tell my story they can imagine their daughter, sister, or someone going through what I'm going through. I don't want people to pity me, but I do want people -- especially legislators to listen and think about what different pieces of legislation affects people like me. By people like me, I mean people with any chronic illness that not only affects my daily life but also my family. I think we, everyone who came to represent the National MS Society, were very successful in getting legislators to listen to us, that's all we can do.

More exciting news the MS license plate bill has passed unanimously in the senate small committee, the senate floor, and most recently the representative small committee. I actually was able to attend the house of representative small committee meeting and tell them how much getting this license plate would mean to me and why I called Senator Gary Smith to sponsor it. It's amazing how supportive they all were, one said he had worked for some MS fundraisers. Another representative agreed with how amazing it would be because of the awareness it would raise.

Initially I was thinking about how much MS has affected my life and figured why not call and ask, worse case scenario is I'd be told no. But, it's a bill that is easily passed and it would raise awareness for MS plus the money raised would go to the National MS Society! It's a win/win in my book and apparently others agree. Now, we're just waiting for it to be put on the agenda to go through to the house floor.  

Here are some pictures:

The first is Senator Gary Smith and I with the official bill. 

Here is Representative Gregory Miller, myself, and Senator Gary Smith. During our two days at the capitol the first day I was observing and taking mental notes. The second day the house of representatives didn't meet until the afternoon and I had a scheduled meeting with Senator Smith. Anyway, we were unable to meet with Representative Miller, once the bill made it's way to the house of representative we needed someone to take the bill over and Senator Smith recommended Representative Miller. With a stroke of luck, Representative Miller was down the hall in a small committee Monday morning too, so Senator Smith went and got him so Crystal (the head of the GRC with the National MS Society) and I could meet him. We happened to be near the state seal so she took a picture near the seal for us! 

MS Fighting is MY Passion

The MS Walk this year has been a huge success. This was our fourth year walking and I think it was one of the best. The weather was amazing, not too hot, and no mud puddles. Our team raised exactly $7,000, there was only one team that raised a little more than us. The National MS Society is still taking donations until late April, so it's not official but I still think it's pretty amazing. Over the last four years we have raised over $20,000! Last year we also raised $7,000. 

I appreciate everyone who has supported me in anyway since I've been diagnosed. When I was first diagnosed I only disclosed the information to some really close friends (I still remember e-mail one of my best friends because I knew I couldn't call her without breaking out in tears, and I knew she'd ask how the MRI went.) Over the years I've become more open, it's also become easier and a HUGE part of that is because I've gotten nothing but support. I don't think I can ever thank those who've donated money to our team, played in our annual golf tournament, and my special friends who even though I can't always keep plans we make have still stayed by my side. 

Now we're in April and it is going to be a busy month. For the first time I will be attending the Louisiana Public Policy Conference with others from the National MS Society as an MS advocate. I've already sent e-mails to my senator and representative asking if they would meet with us so I can share my story and how MS has affected my life. I'm nervous as hell, but my sister will be with me along with some amazing other people who either have MS or have been affected by it in some way. 

Then, the Monday after Easter I'll be getting facet injections. I've been debating if I want to have them done since the last procedure I had (the spinal cord stimulator) ended horribly. I had that procedure on a Thursday, then it was taken out on Tuesday morning, but Monday afternoon I started getting lower back pain. I was so ready to get it out Tuesday and by that night the pain had gotten worse. By Wednesday I had developed a headache and by Friday I was unable to lie on my back, sit up, or even get out of bed by myself. I really hate going to the ER, but it was to the point that my mom wasn't giving me a choice. I ended up having blood in the epidural space and the doctors were concerned I'd develop an infection so I was transferred from Ochsner Kenner's ER to the main campus. I spent a day in the neuro ICU and then transferred to a different room for five days. 

After that I've been really worried about having any injections, but after talking to the PA, the pain doctor, and my pcp I feel like I have to try it. Plus, this time there won't be anything left in my back (the stimulator placed leads in my back). So, I'll be going to an outpatient surgical center and my pain doctor will inject steroids (maybe other medicine too, not 100% sure what exactly it will consist of) into the joint. It's similar to an epidural but instead of the medicine being put around the nerves it'll be it the joints between the vertebrae, he'll probably do it on a few different joints. I'm praying this helps because if it does then he can do a procedure to make it last long. Also it may be able to take the place of my Botox.

 While the Botox helps and I've had done every three months for about 2.5-3 years. But, since my neurologist has done the Botox (instead of the pain doctor) she connects the syringe to wires that make various noises depending on the muscles. The first few times she could tell my muscles were very tight and in February when I had them done we could hear my muscles spasm. This at least answers the question that the pain is coming from my muscles, not the nerves and is a big reason medicines that help with nerve pain weren't very effective. If the muscles are tight or spasming due to inflamed joints in my spine the injections should work. Right now they aren't sure exactly why the muscles are spasming. 

I do have muscle spasms often in other places, so it may just be due to MS or could be a combination. I'll just hope and pray these injections work because the more procedures I try that fail the less hope I have. Sometimes the little glimmer of hope is the only thing that keeps things going, especially when I'm in a lot of pain. BUT, the National MS Society is continually doing research on pain and MS. In their latest magazine (they publish quarterly magazines) they are doing different research with MS and pain. They actually posted an article that they are injecting a certain protein in the backs of mice with MS and it seems semi-promising. It is still at the very beginning stage, but it's hope that maybe one day it'll be something to help me and others suffering from pain with MS. 

Our 4th MS Walk 2014

Saturday approximately 1,000 people and I will be at the MS Walk at Audubon park. This will be my fourth walk. It's amazing how much has changed in the four years since the first year we attended the walk. 

At the end of 2010 my sister asked if I wanted to create a team for the MS Walk, which was March 26, 2011. My immediate answer was no, I didn't know how I'd feel about being around so many others with MS. I was still trying to figure out how to deal with the disease myself and I didn't know how I would feel emotionally seeing people at all different stages of the disease. When I was originally diagnosed I only knew one person who had MS, that person was diagnosed before there were any medicines to treat the disease. After really thinking about it I gave in, and decided that if I couldn't handle it we would leave. Plus, my family was going to be there and they've always been very supportive, helping me through the dark days.

I really didn't have many expectations that year, except that if we were going to do the walk, we'd do it in style of course! At that time Bridget was all into tutus, which we had worn for the red dress run in August of 2010. After thinking about it we decided we'd wear pink and lime green tutus (my favorite colors) and that's when Tutu Cute Fighting MS was born! When I was diagnosed with MS I said I always had to look cute, to hid the fact that I wasn't feeling good at all. Also, I joked that if I ever did need a wheelchair I'd start wearing my heels again because no matter what I'd always stay stylish. 

That year we didn't fundraise much, I sent e-mails to my close friends and family and figured we'd go out there and just have a good day. Well, that year we ended up raising $1500, I was in shock because I never expected to really raise that much money. Of course after that my competitive side wanted to raise more money the next year. 

Over the past four years our MS walk team has raised nearly $20,000!!! This year we are holding strong as the #2 team with $6, 480 and not to brag, but I'm currently the New Orleans #1 individual fundraiser!!! If someone would have told me 4 years ago that I'd do whatever I can to raise money for MS and spread awareness I wouldn't have believed it. 

There are times where I feel as though I haven't been successful since I haven't had a full time job because of the chronic pain I struggle with and how sick I was once I graduated from college. But, if nothing else I've raised a lot of money for the MS Society (with the help of my amazing support system of family and friends) and I've also raised awareness. When I was first diagnosed I went through a period where I was very emotional over the diagnosis, wondering why I had to deal with this after struggling with other chronic illness growing up, it wasn't fair. But, now I realize maybe God knew I'd do everything in my power to raise money and awareness for MS. Even though our team hasn't raised as much as some teams, we do a lot of fundraising throughout the year and every dollar counts. 

Since July 2010 when I was diagnosed, the FDA has approved 3 new ORAL medicines to treat MS (which is huge since all the others were injections or infusions). Each year the society funds new research to stop disease progression, restore what has been lost, and end MS forever. 

Second Chances...

It's not a big secret that I SUCKED at keeping up with this blog, but today I'm going to start new and try to really keep up with this! There were no real reasons for the lack of blogging, but now I'm becoming more open and involved with the National MS Society and I have more to share.

Recently, I registered online to become an MS advocate. I've gotten e-mails from the National MS Society for years about becoming an advocate. The first time I was really excited about signing up until I realized I had to watch a video, which was fine the issue was I was on my way home from the beach that day. To be honest, I didn't contact anyone or really do anything to see if I could work it out, I just let it go. Over the years since I've been diagnosed, I have slowly become more open about my disease and able to talk about it without fighting tears or tears just streaming down my face without being able to control it.

I felt that this time when I got the e-mail about becoming an MS advocate it was just time. I filled the questionnaire out and submitted it, not putting too much thought into it. Well, let's just say if I had known what I was actually getting myself into I may not have pressed send. Unbeknownst to me, in order to become an advocate there was a process that involved discussing me and my involvement among the top members of the Government Relations Committee and an interview.

I'm not much for public speaking, I have done it, but it's not my favorite thing to do. (Just FYI I don't consider teaching to be public speaking, that's totally different. Although I would sometimes try my jokes on them, almost all teachers are hidden comedians). I've really only spoken about my MS story once before in front of a group of people. It was in August 2013 at a mix and mingle event hosted by the MS society in order to bring the members of all the events together. Everyone said it went well, but I felt I sounded nervous and it seemed really quick.

Even though I do get nervous about public speaking, I've agreed to tell my story again, but this time it'll probably be a bigger audience. Over the summer, after getting my car I started looking into the different speciality license plates. Of course my first thought was an LSU one, but I started looking at the different plates and saw how many organizations had speciality plates. Louisiana didn't have a National MS Society license plate, so I went to google to look and see if other states had them. Once I found that a few other states had MS license plates, I asked the two people who handle the government relations in regards to MS.

I wasn't the only person who wanted or had wondered about an MS license plate. Once I realized that speciality license plates had to be passed as a bill I called my local senator. His secretary was very helpful and he gladly said he'd write the bill for us! Then, I sent all the information to the head of the government relations committee. That was in August, now that Congress is in session we're in the process of getting it passed. Here's where the public speaking comes into play, since I started this they want me to give "testimony" and tell them why I wanted this license plate. I'm pretty sure it doesn't matter too much what I say because seriously why hate on something like that? But, it spreads awareness to more people which is one of my main goals.

Since being diagnosed with MS it's been a big part of my life. My sister and I have been a part of the MS Walk committee for three years, participated in the walk for four years, and volunteered at the Vintage Affair (formally the Renaissance Fest) for two years. Once the MS license plates are in production, it'll be another source of fundraising and it'll raise awareness at the same time. Raising awareness for MS has become my goal and raising money helps the society with it's continued research.