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
Tuesday, December 6, 2011
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.
Tuesday, August 30, 2011
Two steps forward, one step back
It seems once I get hopeful that things are turning around, something bad happens. Yesterday I went back to the pain management doctor. We discussed my options to help ease the pain, we ended up just upping my dose of one of my medicines and planned for the other one to stay the same. Well, today and last night after taking the pain medicine, I itched EVERYWHERE! I felt as though I just wanted to pull my skin off to scratch everything. This has happened before, but I just assumed it was related to the MS. Now, it's looking more like I may be allergic to the medicine.
When giving the diagnosis of multiple sclerosis, I was a little optimistic because it meant I'd get answers, treatments, and start feeling better. Well, I was WRONG on so many levels. Instead of bringing answers to me, it brought more questions. Numbness can be defined as abnormal sensation, therefore itching may be a symptom OR a side effect. As far as treatments, it is mainly used to treat symptoms which can be incredibly hard. I feel like I am ALWAYS taking medicine for this or that.
Better news, today Bridget and I went to our first meeting to help with the MS Walk 2012. This year the New Orleans walk will be held on March 24. So far we have come up with several ideas and ways to make the walk more enjoyable for everyone! We are looking into having games and competitions. Of course, if you want to win ya'll join our team, Tutu Cute!!! We will definitely win several awards. The website should be up later this week or next week so we can start registering.
Today has been a super long day and exhausting day. I am still not sleeping well at night, and horrible nights usually lead to even worse days! I fight all day to stay awake and still don't sleep at night. Anyway, today I went to Baton Rouge to have lunch/shop with my friend. Then, I came back to NOLA took a rest and finally went to the MS walk meeting. To many people my exhausting day is a walk in the park. But, for me it takes more energy and when I don't sleep good all of this just intensifies. Now I am at least able/willing to leave the house. There was a time earlier this year when it took all my energy to get out of bed and get out the house.
I wish people around me could understand what a typical/normal day is for me. I never would wish this disease on anyone! But, I feel like people who are uneducated are less likely to understand or even try to understand. When I wake up, I never know what the day will bring. When my hand, foot, arm, or leg is numb I never know if it's temporary or if it will stay for a week or more. While I always keep it in the back of my mind, I can't let myself become absorbed in the MS possibilities. On a daily basis I struggle with memory problems, shaky hands (which can make the easiest task much more complicated), balance problems, and muscle spasms.
Tomorrow will be another fairly busy day, well a busy day for me. I finally signed up to be a substitute. I have to go meet with the man from human resources. I am glad I have put my name in, but I'm definitely scared about subbing. The main benefit is that I can pick and choose what days I want to work. I'll be able to slowly work my way up and continue to get more subbing jobs. My main fear right now with getting a job is that I was miserable for so long with back pain and this summer it's FINALLY gotten better, the light at the end of the tunnel is becoming more obtainable. I worry that once I get back into a job and working 5 days a week teaching and spending majority of the day on my feet.
Prior to being diagnosed with MS I was a practicing Catholic, but didn't fully accept everything into my life. Immediately after being diagnosed I felt betrayed by God and lost some of my faith. In the past few months, I realized that God didn't cause me to get multiple sclerosis, but he's there to help me. I have had days where everything was going on and I was ready to give up. Whenever I feel like I can't fight anymore God gives me more strength and courage to continue. I now know that God is here helping me and not trying to cause pain/suffering. Now that I have found God I feel more at peace and I now that when I am ready to give up and have lost all hope, God is there to give me the strength to continue.
Monday, August 29, 2011
Help find a cure before MS gets on my LAST nerve!
In October of 2007 I ended up in the emergency room with the right half of my body completely numb. I was told by my general doctor to go to the hospital since it had been numb for over 36 hours. Completely terrified, my aunt came and picked me up to bring me and my mom raced to meet us there. Three/four hours later I was told I had carpel tunnel, given pain medicine, and an arm brace to wear. I was told to go to an orthopedic as soon as I could to get checked up. At that appointment I was told it wasn't carpel tunnel and I had a pinched nerve somewhere, well more than one since it was the entire right side!
The numbness went away within the week, so it became a distant memory of the time I waited in the emergency room petrified! While I didn't experience numbness after that, the next couple of years were fairly rough. I had a major surgery that I had my doubts if I'd ever heal from, and gradually this upper back pain starting taking over my life. Of course everyone has some type of back pain at some point in their lives, I carry around lots of heavy books. At first it was just a nagging pain that would come and go so I didn't worry about it too much. Over time the pain continually got worse until I was at my witts end and could no longer handle or manage it with over the counter pain medicines.
I had already been to an orthopedic about my back pains, so my general doctor told me that a rheumatologist would be the next route to take. At the beginning of 2010 I finally made an appointment to see one, optimistic that this was an easily fixed problem. After extensive blood work and physical exam, I was diagnosed with fibromyalgia. I was given three different medicines: a muscle relaxer, ibuprofen, and something to help me sleep. The muscle relaxers definitely helped, but it made me sleepy all the time so I was unable to take it as needed. We went back to see him and discuss other treatment options. The second round of medicines, similar to the first but different drugs in the same class. Those didn't help either since and my stomach was on so much medicine I was always sick. At this point six months had passed and I was no closer to any relief. The last medicine he tried me on was a pain patch, but since the pain was so deep that didn't help at all!
At the time, I felt that I would never get relief or find a doctor that would help me. Looking back, I know my guardian angels were looking out for me and were guiding me to see another doctor. I went to a pain management doctor, who reviewed the blood results and ordered an MRI. I have hypersensitive reflexes and other problems that are common among people who've had trauma or spinal injuries. I didn't really fit that description, but it had to be done.
I knew as soon as the MRI was done that something wasn't right. The man who went in prior to me kept asking the nurse when/how he'd get the results of the test. But, once I was finished the nurse asked me several times, like 3-4, when I was going back to the doctor and then told me to make sure I called his office in about a week. I just had this gut feeling that something wasn't right. Luckily, it was right before fourth of July and my sister, some of her friends and I went to the beach.
A week after the MRI my mom called the doctor for me. My sister and I were on our way home from Florida and I kept texting my mom asking if she'd heard anything. When we were about an 1/1 hr and a half from getting home I called her. She answered and finally admitted the doctor had called back and we'd talk about it when I got home. That was the LONGEST hour of my life, because I knew if it was normal she would have told me that.
I spent the rest of the ride wondering what they found on the MRI. As soon as I saw my mom she told me that the MRI suggested that I had multiple sclerosis. At the time, I knew very little about MS, but I know people who've been effected by the disease. I pretty much lost it, it was not the diagnosis I was prepared for and I just kept seeing pictures of some people with MS and how debilitating it can be.
I will say that the doctors moved super fast to confirm/start treatment. A neurologist was able to fit me in the next day when we scheduled a spinal tap to confirm the disease. Once those results came in I got calls from everywhere! The month went by so fast and I felt like I was drowning, but once I did some research and the doctor started the process of getting my shots (they are ordered from a special pharmacy) I slowly began to feel like I could get my life back to semi normal. Multiple sclerosis is a very frightening disease with so many unknowns, but I always have several nurses, pharmacist, and other people specialized in MS are just a phone call away.
I feel as though once I was diagnosed I entered a whole new world, one that I never knew existed. So many people reached out to help me and convinced me that I am strong enough to fight.
The numbness went away within the week, so it became a distant memory of the time I waited in the emergency room petrified! While I didn't experience numbness after that, the next couple of years were fairly rough. I had a major surgery that I had my doubts if I'd ever heal from, and gradually this upper back pain starting taking over my life. Of course everyone has some type of back pain at some point in their lives, I carry around lots of heavy books. At first it was just a nagging pain that would come and go so I didn't worry about it too much. Over time the pain continually got worse until I was at my witts end and could no longer handle or manage it with over the counter pain medicines.
I had already been to an orthopedic about my back pains, so my general doctor told me that a rheumatologist would be the next route to take. At the beginning of 2010 I finally made an appointment to see one, optimistic that this was an easily fixed problem. After extensive blood work and physical exam, I was diagnosed with fibromyalgia. I was given three different medicines: a muscle relaxer, ibuprofen, and something to help me sleep. The muscle relaxers definitely helped, but it made me sleepy all the time so I was unable to take it as needed. We went back to see him and discuss other treatment options. The second round of medicines, similar to the first but different drugs in the same class. Those didn't help either since and my stomach was on so much medicine I was always sick. At this point six months had passed and I was no closer to any relief. The last medicine he tried me on was a pain patch, but since the pain was so deep that didn't help at all!
At the time, I felt that I would never get relief or find a doctor that would help me. Looking back, I know my guardian angels were looking out for me and were guiding me to see another doctor. I went to a pain management doctor, who reviewed the blood results and ordered an MRI. I have hypersensitive reflexes and other problems that are common among people who've had trauma or spinal injuries. I didn't really fit that description, but it had to be done.
I knew as soon as the MRI was done that something wasn't right. The man who went in prior to me kept asking the nurse when/how he'd get the results of the test. But, once I was finished the nurse asked me several times, like 3-4, when I was going back to the doctor and then told me to make sure I called his office in about a week. I just had this gut feeling that something wasn't right. Luckily, it was right before fourth of July and my sister, some of her friends and I went to the beach.
A week after the MRI my mom called the doctor for me. My sister and I were on our way home from Florida and I kept texting my mom asking if she'd heard anything. When we were about an 1/1 hr and a half from getting home I called her. She answered and finally admitted the doctor had called back and we'd talk about it when I got home. That was the LONGEST hour of my life, because I knew if it was normal she would have told me that.
I spent the rest of the ride wondering what they found on the MRI. As soon as I saw my mom she told me that the MRI suggested that I had multiple sclerosis. At the time, I knew very little about MS, but I know people who've been effected by the disease. I pretty much lost it, it was not the diagnosis I was prepared for and I just kept seeing pictures of some people with MS and how debilitating it can be.
I will say that the doctors moved super fast to confirm/start treatment. A neurologist was able to fit me in the next day when we scheduled a spinal tap to confirm the disease. Once those results came in I got calls from everywhere! The month went by so fast and I felt like I was drowning, but once I did some research and the doctor started the process of getting my shots (they are ordered from a special pharmacy) I slowly began to feel like I could get my life back to semi normal. Multiple sclerosis is a very frightening disease with so many unknowns, but I always have several nurses, pharmacist, and other people specialized in MS are just a phone call away.
I feel as though once I was diagnosed I entered a whole new world, one that I never knew existed. So many people reached out to help me and convinced me that I am strong enough to fight.
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