The past few years have been extremely hard and trying with the diagnosis of MS and finding ways to treat my pain. Monday I went to my pain doctor to discuss more treatment options. For the first time in over three years I am finally able to see the light at the end of the tunnel. I am very optimistic right now that things will soon get better, but I know it won't happen over night. I know it won't be easy getting to the light, but I feel that right now I have a little bit of strength that can help me get through this. For me just feeling that I am close to handling the pain and moving on with my life is HUGE! It's something that I haven't felt in awhile because I never had a good treatment plan that I felt I could work with.
It is also the first time in awhile that I'm starting to think about my future again. Since I graduated I lived day to day and week to week, I never planned anything too far in advance. With the pain and other symptoms of MS it's hard to plan anything too far in advance because I can feel great one day and the next day I'm miserable. Living this way has definitely taken a toll on me and some friendships. I can't make plans too far in advance to hang out and sometimes I have to decline going out because I know my limits. That is probably one of the hardest parts of having MS, I can't always go out and have fun like other people my age. Plus, sometimes I think some of my friends don't realize how bad it is and think I'm just blowing them off. At the end of the day, there's NOTHING I'd rather do more than live a carefree and fun life that most people enjoy in their 20s. It has gotten to the point where one night of fun and going out equals two-three days of feeling miserable afterward. I still go out and try to stay connected with my friends, it just isn't as much as I'd like.
Another issue that has been put on hold because of my pain is a job. I look back and wonder how I even got through my student teaching because after I graduated I basically crashed. Last year at this time I was always sleeping and had a hard time doing anything. But, that was partly due to a medication I was taking that I have sense stopped, so I am not as fatigued. When I think back to student teaching and being in the classroom I do remember how intense the pain was and how exhausted I was. Those memories give me a little anxiety about getting back into the classroom, but it's the next step I need to take. Last week I attended teacher interview day with St. Charles Parish, but at that time they weren't sure who they would need to hire and what grades. There are several rumors going around that there will be teachers leaving and retiring, but I just have to keep my fingers crossed that I get an interview. Even though I am trying to get a job, I am not going to stress over it. Over the last few years, through the good and bad, I've learned things really do happen for a reason. I know when it's time the right job will come along, even though I think now is the right time I also don't know what God has in store for me in the future. Plus, I know I have lots of family members watching over me.
Lately I've also been considering going back to school to get my masters. I've decided that if I don't get a job this year I will apply for grad school and at least be working on something. The main problem with grad school is that right now I'm not 100% on what I would go to grad school for. I looked into it last year some, but I wasn't ready to get back to the classroom yet with the pain and other issues. Stress is one thing that can cause more intense MS symptoms, so right now I'm just trying to lead as stress free of a life as possible.
I know it's been awhile since I blogged, I should get better about that! Anyway, this year the MS Walk was very successful. Our team had about 30 members and we raised over $5,500 which I was thrilled about. I am truly grateful for all my friends and family that have supported me through everything, both with donations and just being there. It's almost been two years since I was diagnosed and there is no way I would be who I am today and where I am today if I didn't have support from friends and family. I know this is cliche but I also know who my true friends are because they are the ones who are always there. Next year I hope we're able to raise even more money for MS. We are already starting to plan our golf tournament for this year and Bridget and I are trying to host a drinking/painting class over the summer. If you would like to come to one of our events, help us, or have any other ideas I'd love to hear about it!
That's pretty much it until June. In June and July I'll have my next round of doctors appointments. Somehow I go see most of my doctors then. The last round of appointments went fairly well, so I'm hoping there isn't much difference this summer. Plus, I will be getting another dose of Botox to help with the pain. When we went Monday he said that during my next visit we would increase the Botox by 30%. Last time I got Botox it helped some, but it wasn't the perfect solution. Hopefully this new dose will be more effective. It's just frustrating because I can only get Botox every three months and when doing Botox in the back/spine it needs to be done carefully because too much Botox can cause the muscles to become so weak. If the muscles are too weak then I won't be able to stand/walk until it wears off.
Thursday, May 17, 2012
Friday, March 9, 2012
March is MS awareness month!!!
It also marks a year that I've been with my "new" doctors. While I'm not where near 100%, I am much better than I was last year at this time and I have hope that by this time next year I will be even better. It's hard to believe that it's been four years since my first relapse. Sometimes I wonder where I'd be today if I had been diagnosed then rather than three years later. But, I know that playing the "what if" game never gets me anywhere.
Earlier this week I went to the hematologist (I was supposed to go in September but had to cancel), but she wasn't able to give me too many answers since the blood work was done earlier the same day. Iron and vitamin b 12 take a few days to come back. She was able to tell me that my platelets were good and that the red blood cells were a good size, which is good. When the red blood cells are smaller than they are supposed to be it indicates that there is a lack of iron. I've been trying to get more iron in my diet so I don't have to go through another iron transfusion.
Tuesday morning I will be heading back to the neurologist for a check up. Hopefully this visit is less eventful than the last visit. I did get results from my EEG and they came back normal! That was the biggest relief I could have asked for, but I still have to be cautious with medicines I take. The ultram is the pain medicine that was most likely to cause seizures, but there are a list of other medications I need to steer clear of to avoid another seizure. I also had an MRI and those results were stable, which means that the Copaxone is helping which is also promising! Since Copaxone is the mildest disease modifying drug, the longer it helps the better off I am long term. The other drugs used to treat MS can be harmful on the liver and other organs.
My last doctor appointment this month is with my pain doctor in a little over a week. During my next visit, fingers crossed, I'm supposed to get Botox to help with the back pain. I really hope it works because I am beyond frustrated with the pain. I've been on a variety of different regimens and none of truly helped me feel pain free. To be honest I can probably count on my hands the number of days I've been pain free (or in minimal pain) in the past four years. Sadly, two of the times that I was actually pain free it was from lidocaine used to numb my back before my epidural and lumbar puncture. The main problem is that it wears of fairly quickly and isn't a long-term answer.
When I switched medications in December the doctor said he had other treatments we could try if this didn't work. Hopefully we can talk about some of these when I go next time. I have not been able to live my life to the fullest because of the pain. When I do get bouts of time that are limited in pain I do as much as I possibly can, but then I always regret it later when the pain is intensified. I'm ready to get a job and live a "normal" life, but when I think of teaching/working I get overwhelmed.
During student teaching I was constantly in pain and always tired, I look back wondering how I was able to manage it. There was a drive in me, like I knew I had to push through it to get to graduation, but when I sub or look at jobs online I know that if I were to start working now it would not end well. I am trying to avoid a situation where I get a job and then have to take sick days because of the pain and fatigue. I don't want to put myself in a situation where I am taking off so much that the school thinks I am not serious or something like that. Even though I am still not in a position where I'm comfortable getting a job, I know I can't hold it off for too much longer.
That's pretty much everything that's been going on lately. I am super excited for the walk coming up, this year our team is bigger and we've raised close to $5,000. We still need about $400 but I have faith we can do it!!! Plus, the support I've received from friends and family is overwhelming and reminds me that I'm not alone in my fight. Also, MS is such an unpredictable disease and raising money is something I can control. By raising money now, it helps fund research and the society uses some of the money to help people living with MS. Since I am able to raise money now I feel like I owe it to others with MS who need assistance, plus one day I may need help from the MS society.
Tuesday, February 14, 2012
Happy Valentine's Day
I'd like to start by wishing everyone a Happy Valentine's Day. Since today is a day about love (not just for our spouses/partners, but also for our friends and family) I'd like to tell everyone that I'm sorry I may not have been the best friend or family member over the past month and half. I do appreciate all my friends and family that have supported me and stuck with me through these hard times, not just the past month or so, but through the whole diagnosis process. It hasn't been easy for me, and I'm sure it hasn't always been easy for everyone else! I honestly hate having to cancel on friends at the last minute or have plans adjusted for me. At the same time, I hope everyone realizes how much I DO APPRECIATE it though! Without my friends and family I'm not sure I'd be coping as well as I am right now.
Anyway, since things have been crazy and intense lately and I've been horrible about updating I'll give you a glimpse about what's been going on in my world causing me to cancel or try to reschedule. First off, winter has not been my friend. I know many of you are thinking, well it hasn't even been a bad winter, which trust me I know! But, I'm not sure what's worse the constant getting cold, warming up trend we've been having or if it had been cold non stop. Basically, every time we get rain, it gets cold, and then changes again my back pain gets worse. I'm not sure why, neither are the doctors for that matter, the weather has been causing increased pain in my back but every time the weather changes I can tell you without even going outside or watching the weather. Once it warms up a bit I usually get a little better, but then rain/cold comes through and it starts all over again. I'm keeping my fingers crossed that this summer may be kinder and I may finally be able to do everything I love again.
All of this brings me to late January, when we were having crazy weather and my back was hurting fairly badly. I was on a pain patch, but it didn't take away the pain 100%. I called the doctor, he suggested I add Ultram to the patch to help with break through pain. Prior to this I had been on the patch, and had taken Ultram in the past to help with the pain. Neither one really did away with all my pain, but frustrated and willing to try anything I agreed. I started added the Ultram to my long list of medicines on a Tuesday. By the time I took it Wednesday afternoon I was starting to feel better, it was actually one of those times I just sighed and thought maybe this is the pair of medicines I have been looking for. Well, of course I cursed myself, it's one of those things once you think it things turn around and you think back at that point.
I took my final dose of the day Wednesday right before dinner. Bridget had made us some pizza and I was about to make a salad to add to my pizza. Everything was going fine, I had started making the salad and all the sudden the next thing I know I was lying on the floor with a pillow under my head. While to anyone that would seem abnormal, lying on the kitchen floor with a pillow, I was so confused and out of it I just thought everything was okay. I couldn't have been further from the truth really.
As I was on the floor Bridget was on my right side and my mom on my left, they were both talking to me, but I was only catching part of what they were saying. They told me how I just had a seizure and we had to go to the hospital. I just kept saying no, no, no, and trying to close my eyes because I was so tired. In my head, I thought I told them I didn't want to go to the hospital and I was fine, but apparently the only word coming out was no. I vaguely remember my dad asking my mom and sister questions (he was on the phone with 911), and my mom said I was breathing but it was very labored. It was the strangest feeling because while I was the one going through everything, it didn't feel like that.
Shortly after I work up the paramedics were in the kitchen, one asking my sister and dad what medications I was on, and a short medical history while the other was checking my blood sugar to see if it was high or low. They also asked which hospital I would like to go to but I was so insistent that I didn't need to go to the hospital, but I lost. So we ended up going to one of the Ochsner hospitals since that's where most of my doctors are now.
I was pretty out of it and confused until we got to the hospital. The paramedic continued asking questions but I just couldn't remember no matter how hard I tried. Also, I didn't remember any of the seizure, I was also have difficulty even remembering what I was doing prior to the seizure at first. While at the hospital they ran several test to see if there was any reason for the seizure that needed to be taken care of ASAP. It took forever for them to get an IV in me due to dehydration, all my veins were so deep. They did blood work, a neurological exam, an ekg, a chest x-ray, and a ct-scan. The doctor wanted to make sure I hadn't injured myself during the seizure. Luckily, the test came back normal and about 4 hours after the seizure I was able to go home. Even though I didn't have to stay in the hospital, that didn't mean the ordeal was over. Leaving the hospital I was instructed to not drive, come back if I had another seizure, and not to shower if I was home alone.
The next morning I called my neurologist to tell her what had happened and she set me up for an eeg and mri as well as making sure I discontinued both of the new medicines, that less than 24 hours ago were my "miracle" drugs. The first EEG was done on a Friday morning and took forever! A test that I was told would take about an hour ended up taking 3 hours (which I later found out was due to the fact that I was given a trainee)! Then, Monday I went for an MRI, which also took approximately 3 hours because we had to follow the seizure MRI protocol and then the MS MRI protocol and the contrast. Let's just say by the time I went to see my doctor Tuesday morning I was so sick of hospitals, doctors, and tests! She said that the seizure was most likely medically induced and hopefully if I stopped the medicines everything would go back to normal. Unfortunately, the EEG was pretty abnormal (probably because the patch was still in my system) so I was going to have to go through that AGAIN! I also have to be careful with certain medicines and check to make sure in the future that these medicines that are more likely to cause seizures are avoided. Since I've had one seizure from medicine the chances are higher for having another medical induced seizure.
Last Thursday, I went for my second EEG, but luckily this one only took a little over an hour! I was so happy when she said we were done and I looked at the clock. I am still waiting for the results though. To me waiting is almost as bad as getting the test. I'm most anxious about the MRIs because they will tell me if I have developed any new lesions. While I sometimes feel that the symptoms have gotten a little more intense, noticeable it may just be that I am more aware of them that I previously was. Hopefully I will be hearing from the doctor soon so I'll know how much my MRI has changed over the past year. Although it's good to know, it's also hard because besides taking the medicine daily there is little I am actually in control of.
Last Monday I also went to the pain doctor who gave me some shots in my back to help with pain. So far it's helped some, but I still need extra medicine to truly handle the pain. He did say he'd rather just keep me on the medicine I'm on for pain since the seizure. I really think the seizure scared/worried the people around me, doctors that work with me more than it did me. I have the advantage of not remembering any of it. It's my family that has the imagine of that horrible night. I'm sure it'll be harder for them to move past and I truly feel bad about that! I'd never want to intentionally worry them. I have been trying to add humor to it so they know I'm okay. At the end of the day MS isn't a disease that solely affects me, but it affects everyone around me.
After all that negativity, I'll end with something happy! We have about a month and a half until the MS Walk, March 24! So far this year we have raised over $4,500. That far exceeds any expectations I had after last year. Working with the MS society to put the walk on and making our team amazing is one of few ways I feel I can help myself! There is little I can physically do to fight MS, but raising money is one way I can help. There are so many research trials being done right now, in order for them to be successful they need money. Also, the MS society helps people who need financial assistance with modifications to help make their lives a little easier.
Anyway, since things have been crazy and intense lately and I've been horrible about updating I'll give you a glimpse about what's been going on in my world causing me to cancel or try to reschedule. First off, winter has not been my friend. I know many of you are thinking, well it hasn't even been a bad winter, which trust me I know! But, I'm not sure what's worse the constant getting cold, warming up trend we've been having or if it had been cold non stop. Basically, every time we get rain, it gets cold, and then changes again my back pain gets worse. I'm not sure why, neither are the doctors for that matter, the weather has been causing increased pain in my back but every time the weather changes I can tell you without even going outside or watching the weather. Once it warms up a bit I usually get a little better, but then rain/cold comes through and it starts all over again. I'm keeping my fingers crossed that this summer may be kinder and I may finally be able to do everything I love again.
All of this brings me to late January, when we were having crazy weather and my back was hurting fairly badly. I was on a pain patch, but it didn't take away the pain 100%. I called the doctor, he suggested I add Ultram to the patch to help with break through pain. Prior to this I had been on the patch, and had taken Ultram in the past to help with the pain. Neither one really did away with all my pain, but frustrated and willing to try anything I agreed. I started added the Ultram to my long list of medicines on a Tuesday. By the time I took it Wednesday afternoon I was starting to feel better, it was actually one of those times I just sighed and thought maybe this is the pair of medicines I have been looking for. Well, of course I cursed myself, it's one of those things once you think it things turn around and you think back at that point.
I took my final dose of the day Wednesday right before dinner. Bridget had made us some pizza and I was about to make a salad to add to my pizza. Everything was going fine, I had started making the salad and all the sudden the next thing I know I was lying on the floor with a pillow under my head. While to anyone that would seem abnormal, lying on the kitchen floor with a pillow, I was so confused and out of it I just thought everything was okay. I couldn't have been further from the truth really.
As I was on the floor Bridget was on my right side and my mom on my left, they were both talking to me, but I was only catching part of what they were saying. They told me how I just had a seizure and we had to go to the hospital. I just kept saying no, no, no, and trying to close my eyes because I was so tired. In my head, I thought I told them I didn't want to go to the hospital and I was fine, but apparently the only word coming out was no. I vaguely remember my dad asking my mom and sister questions (he was on the phone with 911), and my mom said I was breathing but it was very labored. It was the strangest feeling because while I was the one going through everything, it didn't feel like that.
Shortly after I work up the paramedics were in the kitchen, one asking my sister and dad what medications I was on, and a short medical history while the other was checking my blood sugar to see if it was high or low. They also asked which hospital I would like to go to but I was so insistent that I didn't need to go to the hospital, but I lost. So we ended up going to one of the Ochsner hospitals since that's where most of my doctors are now.
I was pretty out of it and confused until we got to the hospital. The paramedic continued asking questions but I just couldn't remember no matter how hard I tried. Also, I didn't remember any of the seizure, I was also have difficulty even remembering what I was doing prior to the seizure at first. While at the hospital they ran several test to see if there was any reason for the seizure that needed to be taken care of ASAP. It took forever for them to get an IV in me due to dehydration, all my veins were so deep. They did blood work, a neurological exam, an ekg, a chest x-ray, and a ct-scan. The doctor wanted to make sure I hadn't injured myself during the seizure. Luckily, the test came back normal and about 4 hours after the seizure I was able to go home. Even though I didn't have to stay in the hospital, that didn't mean the ordeal was over. Leaving the hospital I was instructed to not drive, come back if I had another seizure, and not to shower if I was home alone.
The next morning I called my neurologist to tell her what had happened and she set me up for an eeg and mri as well as making sure I discontinued both of the new medicines, that less than 24 hours ago were my "miracle" drugs. The first EEG was done on a Friday morning and took forever! A test that I was told would take about an hour ended up taking 3 hours (which I later found out was due to the fact that I was given a trainee)! Then, Monday I went for an MRI, which also took approximately 3 hours because we had to follow the seizure MRI protocol and then the MS MRI protocol and the contrast. Let's just say by the time I went to see my doctor Tuesday morning I was so sick of hospitals, doctors, and tests! She said that the seizure was most likely medically induced and hopefully if I stopped the medicines everything would go back to normal. Unfortunately, the EEG was pretty abnormal (probably because the patch was still in my system) so I was going to have to go through that AGAIN! I also have to be careful with certain medicines and check to make sure in the future that these medicines that are more likely to cause seizures are avoided. Since I've had one seizure from medicine the chances are higher for having another medical induced seizure.
Last Thursday, I went for my second EEG, but luckily this one only took a little over an hour! I was so happy when she said we were done and I looked at the clock. I am still waiting for the results though. To me waiting is almost as bad as getting the test. I'm most anxious about the MRIs because they will tell me if I have developed any new lesions. While I sometimes feel that the symptoms have gotten a little more intense, noticeable it may just be that I am more aware of them that I previously was. Hopefully I will be hearing from the doctor soon so I'll know how much my MRI has changed over the past year. Although it's good to know, it's also hard because besides taking the medicine daily there is little I am actually in control of.
Last Monday I also went to the pain doctor who gave me some shots in my back to help with pain. So far it's helped some, but I still need extra medicine to truly handle the pain. He did say he'd rather just keep me on the medicine I'm on for pain since the seizure. I really think the seizure scared/worried the people around me, doctors that work with me more than it did me. I have the advantage of not remembering any of it. It's my family that has the imagine of that horrible night. I'm sure it'll be harder for them to move past and I truly feel bad about that! I'd never want to intentionally worry them. I have been trying to add humor to it so they know I'm okay. At the end of the day MS isn't a disease that solely affects me, but it affects everyone around me.
After all that negativity, I'll end with something happy! We have about a month and a half until the MS Walk, March 24! So far this year we have raised over $4,500. That far exceeds any expectations I had after last year. Working with the MS society to put the walk on and making our team amazing is one of few ways I feel I can help myself! There is little I can physically do to fight MS, but raising money is one way I can help. There are so many research trials being done right now, in order for them to be successful they need money. Also, the MS society helps people who need financial assistance with modifications to help make their lives a little easier.
Tuesday, December 6, 2011
All I Want for Christmas is a Cure!!!
WOW I suck at writing this!!! haha I guess I need to try harder, but when I feel good I like to utilize that time and when I'm not feeling good I seem to stay in bed/sit in my oh so comfy chair and not do anything. So here's a quick update from the last time... I had my first set of Botox shots at the end of October, it seemed to help somewhat, but definitely NOT the miracle I was hoping and praying for. It's gotten worse as time goes by, but with the crazy Louisiana weather each time a cold from moves through I feel miserable!
But, there may be a light at the end of the tunnel, but it could also be a another train. At this point I've learned to not put all my eggs in a basket. It's easier to be pleasantly surprised rather than blind sided by effects I wasn't expecting. Yesterday I had another appointment with my pain doctor, which I feel is FINALLY moved in the right direction. I got a steroid injection in my back, so far it's helping some BUT again, I'm not putting ALL my faith in it. I also got pain medicine to help and an appointment with a Muscular doctor at the end of the month. Round 2 of Botox is also supposed to be done in February. I just hope that something gets better and changes soon!
Some really EXCITING news, our first golf tournament was a success! So far we have raised over $3,000 the only downside is writing Thank You notes to everyone who helped/donated. I try to make each thank you note special and fun, but after writing 20 I was running out of new phrases to use. But, that's definitely a good type of problem.
Right now it's crazy to think that in less than two weeks is my birthday which also means it's been a year since I graduated from LSU and still am not able to get a job! While it's been nice to have a year of little/no stress and being able to focus on me and my health, I know long term I need a job and means to support myself. I keep saying when I get better I'll start looking more, but the reality is I have NO IDEA how long it will essentially take to get to that point.
I've been studying for the GRE on/off but have yet to reschedule the test, I think I got super nervous because it's intimidating and there are certain parts that I haven't dealt with since high school! Plus, I'm still on the fence about what I want to study because EVERYONE has an opinion, but looking back sometimes when I follow their advice I sometimes regret it later. Although, I've become a firm believer that everything has a reason and purpose.
Looking back through all of this pain and hardship, I have been dealt some pretty good outcomes too. I am (as funny as this sounds) greatful that the first doctor I went to was a complete ass hole! If he had been effective and helped me, I have NO IDEA how long I would have gone without being diagnosed. While it's not the most ideal situation, at the end of the day I am glad I was able to start the medicine instead of it continually getting worse. Also, for insurance purposes it was a blessing in disguise that it took my 4.5 years to graduate from LSU because of the Obama law and allowing me to stay on my dad's insurance. Right now I'm so blessed to have great insurance, so many people don't and having a disease like MS can get very expensive with the continual MRIs, medicine, and other needs that need special attention. While I can't say I'm thankful for my health, I can say that in such a bad situation I have had a "good" experience. I find it's good for me when I step back and think of all the good things have come from this and I also know who my close friends/family are via their support.
That's it for now. I'll TRY to continue to keep updating, I have two more doctor's appointments this month, the one I've crossed off went well, so we just need to keep up the momentum!
Tara
But, there may be a light at the end of the tunnel, but it could also be a another train. At this point I've learned to not put all my eggs in a basket. It's easier to be pleasantly surprised rather than blind sided by effects I wasn't expecting. Yesterday I had another appointment with my pain doctor, which I feel is FINALLY moved in the right direction. I got a steroid injection in my back, so far it's helping some BUT again, I'm not putting ALL my faith in it. I also got pain medicine to help and an appointment with a Muscular doctor at the end of the month. Round 2 of Botox is also supposed to be done in February. I just hope that something gets better and changes soon!
Some really EXCITING news, our first golf tournament was a success! So far we have raised over $3,000 the only downside is writing Thank You notes to everyone who helped/donated. I try to make each thank you note special and fun, but after writing 20 I was running out of new phrases to use. But, that's definitely a good type of problem.
Right now it's crazy to think that in less than two weeks is my birthday which also means it's been a year since I graduated from LSU and still am not able to get a job! While it's been nice to have a year of little/no stress and being able to focus on me and my health, I know long term I need a job and means to support myself. I keep saying when I get better I'll start looking more, but the reality is I have NO IDEA how long it will essentially take to get to that point.
I've been studying for the GRE on/off but have yet to reschedule the test, I think I got super nervous because it's intimidating and there are certain parts that I haven't dealt with since high school! Plus, I'm still on the fence about what I want to study because EVERYONE has an opinion, but looking back sometimes when I follow their advice I sometimes regret it later. Although, I've become a firm believer that everything has a reason and purpose.
Looking back through all of this pain and hardship, I have been dealt some pretty good outcomes too. I am (as funny as this sounds) greatful that the first doctor I went to was a complete ass hole! If he had been effective and helped me, I have NO IDEA how long I would have gone without being diagnosed. While it's not the most ideal situation, at the end of the day I am glad I was able to start the medicine instead of it continually getting worse. Also, for insurance purposes it was a blessing in disguise that it took my 4.5 years to graduate from LSU because of the Obama law and allowing me to stay on my dad's insurance. Right now I'm so blessed to have great insurance, so many people don't and having a disease like MS can get very expensive with the continual MRIs, medicine, and other needs that need special attention. While I can't say I'm thankful for my health, I can say that in such a bad situation I have had a "good" experience. I find it's good for me when I step back and think of all the good things have come from this and I also know who my close friends/family are via their support.
That's it for now. I'll TRY to continue to keep updating, I have two more doctor's appointments this month, the one I've crossed off went well, so we just need to keep up the momentum!
Tara
Tuesday, October 25, 2011
MS = A huge life change
Sorry for the delay, it's been over a month. So much has happened in the past two months. Due to the weather, it's been a long two months. But, Thursday is Botox day and right now I'm putting all my hope/faith into that being the key to helping me feel better! I'm haven't thought about what I'll do next if that doesn't work, so it better work!
Over the past two months I've been busy working on our Golf Tournament. It's set for November 12, at noon! I was worried about participation and if we could get enough players and support. Well, we only have two "official" teams, but others have verbally committed! But, what really has been amazing is the amount of people giving us money to sponsor a hole or cart. Having all these people come together to help me raise money for multiple sclerosis research is overwhelming! I can't believe how many people have donated money, time, and items to help. It makes me feel good that they are helping support me too. I hope everyone knows how much I appreciate all the support and donations, because this money will help fund research to help find other more effective treatments and possible a cure.
Having MS has meant a lot of different things for me in the past year and a half. For me, having MS means that I have to take a shot every night, that I have to take so many pills throughout the day to help minimize my symptoms. Sometimes MS causes me to miss out on fun and a good time. I am always in and out of doctor's offices, I've lost count how many doctors I have now, I have one in almost every field. Living with MS is definitely a hard battle, but it is something that I must take one day at a time. Having MS has taught me that I can't stress over the future or follow a plan. I now go with the flow more, from one day to the next I never know what symptoms I will have to tackle or if I'll wake up with numb limbs. It can definitely be overwhelming if you dwell on all the things MS can do to the body, so instead I would rather educate people on MS and raise money to help fund new research. The last ten- twenty years, doctors have made huge strides in MS medicines, so it is my hope to see that in the next ten to twenty years they come closer to a cure. Maybe one day people won't have to live in a world with MS.
Over the past two months I've been busy working on our Golf Tournament. It's set for November 12, at noon! I was worried about participation and if we could get enough players and support. Well, we only have two "official" teams, but others have verbally committed! But, what really has been amazing is the amount of people giving us money to sponsor a hole or cart. Having all these people come together to help me raise money for multiple sclerosis research is overwhelming! I can't believe how many people have donated money, time, and items to help. It makes me feel good that they are helping support me too. I hope everyone knows how much I appreciate all the support and donations, because this money will help fund research to help find other more effective treatments and possible a cure.
Having MS has meant a lot of different things for me in the past year and a half. For me, having MS means that I have to take a shot every night, that I have to take so many pills throughout the day to help minimize my symptoms. Sometimes MS causes me to miss out on fun and a good time. I am always in and out of doctor's offices, I've lost count how many doctors I have now, I have one in almost every field. Living with MS is definitely a hard battle, but it is something that I must take one day at a time. Having MS has taught me that I can't stress over the future or follow a plan. I now go with the flow more, from one day to the next I never know what symptoms I will have to tackle or if I'll wake up with numb limbs. It can definitely be overwhelming if you dwell on all the things MS can do to the body, so instead I would rather educate people on MS and raise money to help fund new research. The last ten- twenty years, doctors have made huge strides in MS medicines, so it is my hope to see that in the next ten to twenty years they come closer to a cure. Maybe one day people won't have to live in a world with MS.
Saturday, September 10, 2011
When it rains, it pours....
I finally took the time to go to Central Office and sign up to be a sub. I really didn't think it was that big of a deal, just a TON of paper work. But, I had already done majority of it when I signed up to teach community education classes. Well, of course my hands were very shaky that day and I had to get my finger prints taken. The lady doing my finger prints definitely noticed my shaky hands, but I just laughed it off. She then asked if I was nervous or cold. I'm pretty sure she was thinking I was worried/nervous that something would show up on my record when they ran my finger prints.
I had gotten over that situation, and was more conscience of my hands while I completed the rest of my paper work. Then, I got to the worker's compensation pages. The first page was fine, but then I got to the page where it asked about medical history I began getting nervous. It listed several diseases and conditions of course multiple sclerosis on the list so I had to check it. It was like I have been keeping this "secret" so that it wouldn't prevent me from getting a job, but I had to disclose it now. I know it shouldn't effect my chances of getting a job, but I feel like once people are aware of the disease I have to prove myself.
I have been trying so hard since I started feeling bad and in pain to not use my health as a crutch. I've always tried to make sure that in school/work I put in 110% so people didn't think I was making it worse than it was or that I was just being lazy. Then, last summer when I finally got the diagnosis it came right before I was going to start student teaching. I struggled for a while trying to decide if I should tell my mentor and adviser. In the end I did, but it was the same situation. I felt that I had to go above and beyond so no one thought I was using multiple sclerosis as an excuse to do less work or put in less effort.
I also feel that by putting in so much effort, people don't notice that somethings wrong. I tried every day to just grin and bear it once I leave the house. It has become a coping mechanism that helps me deal, I don't let people see how bad the pain or other symptoms are. But, when people can look at me and seen that something is wrong, I get frustrated because that's something I can only do so much to hide. When I'm out with friends, no one knows I have MS, because it's an invisible disease that only those closest to me know about. When people can look at me and see something is wrong, I feel like it's no longer in my control over who knows and who doesn't (probably the only thing I can actually control right now.)
Right now there are so many things are out of my control. I don't have control over my symptoms, I can only handle how I deal with these symptoms. I basically have to wake up every day wondering what symptoms I will experience. It's like every morning I wake up and going through a mental check list to see if I can feel all my arms, feet, legs, and anything else. Anytime my arms or legs "fall asleep" in the back of my mind I am thinking about how long it will last, minutes, hours, or days.
I had gotten over that situation, and was more conscience of my hands while I completed the rest of my paper work. Then, I got to the worker's compensation pages. The first page was fine, but then I got to the page where it asked about medical history I began getting nervous. It listed several diseases and conditions of course multiple sclerosis on the list so I had to check it. It was like I have been keeping this "secret" so that it wouldn't prevent me from getting a job, but I had to disclose it now. I know it shouldn't effect my chances of getting a job, but I feel like once people are aware of the disease I have to prove myself.
I have been trying so hard since I started feeling bad and in pain to not use my health as a crutch. I've always tried to make sure that in school/work I put in 110% so people didn't think I was making it worse than it was or that I was just being lazy. Then, last summer when I finally got the diagnosis it came right before I was going to start student teaching. I struggled for a while trying to decide if I should tell my mentor and adviser. In the end I did, but it was the same situation. I felt that I had to go above and beyond so no one thought I was using multiple sclerosis as an excuse to do less work or put in less effort.
I also feel that by putting in so much effort, people don't notice that somethings wrong. I tried every day to just grin and bear it once I leave the house. It has become a coping mechanism that helps me deal, I don't let people see how bad the pain or other symptoms are. But, when people can look at me and seen that something is wrong, I get frustrated because that's something I can only do so much to hide. When I'm out with friends, no one knows I have MS, because it's an invisible disease that only those closest to me know about. When people can look at me and see something is wrong, I feel like it's no longer in my control over who knows and who doesn't (probably the only thing I can actually control right now.)
Right now there are so many things are out of my control. I don't have control over my symptoms, I can only handle how I deal with these symptoms. I basically have to wake up every day wondering what symptoms I will experience. It's like every morning I wake up and going through a mental check list to see if I can feel all my arms, feet, legs, and anything else. Anytime my arms or legs "fall asleep" in the back of my mind I am thinking about how long it will last, minutes, hours, or days.
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