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!