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.
Friday, April 4, 2014
Thursday, March 20, 2014
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.
Tuesday, March 18, 2014
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.
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.
Wednesday, October 31, 2012
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.
Wednesday, September 12, 2012
"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!
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!
Monday, September 10, 2012
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.
Monday, August 20, 2012
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!
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!
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