"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