Before I was diagnosed with MS, I only knew of a few people with MS. The people I knew were diagnosed before there were any treatments for MS. Since there weren't any treatments the disease progressed faster than for people like me who started treatment right away.
Multiple sclerosis effects everyone differently so no two people will have the same symptoms. When I was diagnosed with MS I was upset because I assumed I'd be in a wheelchair. But, over time I realized that not everyone with MS will need a wheelchair. Plus, I also decided if I have to use a wheelchair I will wear all my cute heels that I haven't been able to wear often ;)
Woman with MS can have babies and have a completely normal pregnancy. The only issue a mother may have is that once having a baby some women experience a relapse. Plus, there isn't any research that MS is past down from mother to child. There is a small percent chance that if you are related to someone with MS that you can get MS but it isn't that high of a possibility.
Everyday I wish I could have my old life back. When I first went to my new neurologist (a doctor who works solely with MS patients) told me that I was "lucky" because I was young (even though I thought otherwise) and that I was female. Women are more likely than men to develop MS, but women tend to do better than men with MS. Plus, just because I have MS doesn't mean I can't live a full and great life.
I'm not sure why, but people with MS tend to have low levels of vitamin D. When I first started seeing doctors they did blood work and my vitamin D levels were really low. I was given a prescription to take 50,000 units once a week for at least a month. Now I get 5,000 units of vitamin D daily.
There are four different types of MS: relapsing-remitting (which is the most common form and the type of MS I have), primary-progressive, secondary-progressive, and progressive-relasping. To monitor the symptoms and lesions of the brain yearly or sometimes more MRIs.
There are several disease modifying drugs on the market today. Plus, the best news of all is there are several pills. When I was first diagnosed I was given a daily injection Copaxone. Copaxone was very acidic so when I first started taking it it would burn so bad. I still have whelps from where I did the shots were done. Since I wouldn't let anyone help me with my shots I was limited to where I could do them because when I was first diagnosed with MS I was finishing my last semester at LSU so I had to do them myself. Then, once I moved home I was so used to doing them myself so I wouldn't let anyone help me. Luckily after 3 years I was able to switch to Tecfidera one of the pills and I love it some much!!!
Friday, January 2, 2015
Thursday, January 1, 2015
Ablation Procedures
In April 2014 I had a facet injections in my upper back. It helped more than I could have expect, but it was supposed to last for 3 months and for me it only lasted for about a month or a little more. Since the facet injections so they scheduled me to have the ablation (they burn the nerves near the vertebra).
But, BCBS denied the ablation because even though it's FDA approved they consider it "experimental." It was so hard because I've been in chronic pain for years and every other procedures I tried didn't last too long. I have been getting Botox to relax the muscles but again it was supposed to last 3 months and usually it would last for about 2 months or so.
It is very hard being so young and in pain for so long. There comes a point where it's so bad being so young and being in pain for so long. There are times when I worry that I'll never be pain free. I also worry about what will happen after I get when I get older I hope I'm able to get relief from the pain. I'm not even out of my 30s and I've been in pain for so long I don't know the last time I was pain free, even low pain days.
Finally I talked to the PA about paying for the procedure with cash. They do the procedures in two parts they do one side and then 2-3 weeks later they do the other side. The first one was on December 8 and the second was on December 29. The first procedure went over really well but the second one I done I was in more pain afterward. Now I have to see how long it'll last because the doctor told me it could be anywhere from 6 months to 2 years. I doubt it'll last 2 years, I can never get that lucky. That being said, I tend to have an issue with procedures they usually last on the shorter side.
I am bitter because if I hadn't been misdiagnosed I probably wouldn't have to deal with chronic pain. I have gone to some crazy doctors who told me I shouldn't be in pain because MS isn't a pain disease. That's completely untrue! The National MS Society did a study and it showed that many people living with MS do experience pain. It amazes me because doctors say these things and don't have real evidence to back it up.
But, BCBS denied the ablation because even though it's FDA approved they consider it "experimental." It was so hard because I've been in chronic pain for years and every other procedures I tried didn't last too long. I have been getting Botox to relax the muscles but again it was supposed to last 3 months and usually it would last for about 2 months or so.
It is very hard being so young and in pain for so long. There comes a point where it's so bad being so young and being in pain for so long. There are times when I worry that I'll never be pain free. I also worry about what will happen after I get when I get older I hope I'm able to get relief from the pain. I'm not even out of my 30s and I've been in pain for so long I don't know the last time I was pain free, even low pain days.
Finally I talked to the PA about paying for the procedure with cash. They do the procedures in two parts they do one side and then 2-3 weeks later they do the other side. The first one was on December 8 and the second was on December 29. The first procedure went over really well but the second one I done I was in more pain afterward. Now I have to see how long it'll last because the doctor told me it could be anywhere from 6 months to 2 years. I doubt it'll last 2 years, I can never get that lucky. That being said, I tend to have an issue with procedures they usually last on the shorter side.
I am bitter because if I hadn't been misdiagnosed I probably wouldn't have to deal with chronic pain. I have gone to some crazy doctors who told me I shouldn't be in pain because MS isn't a pain disease. That's completely untrue! The National MS Society did a study and it showed that many people living with MS do experience pain. It amazes me because doctors say these things and don't have real evidence to back it up.
Wednesday, October 29, 2014
Pretty in Pink
I usually write about my struggles with MS and how it's affected and changed my life over the past four years. While multiple sclerosis is a major health issue I deal with from day to day, but I'm "lucky" in a very unlucky way.
October is one of my favorite times of the year, but not because of halloween like most people. October is breast cancer awareness month and as someone who has a slight obsession with pink, I get excited about all the products that come in pink. Over the years I've collected quite a lot of pink items during October like pink knives set, a pink coffee pot, pink/black Northface jacket, and so much more!
Until four years ago, I supported breast cancer awareness because of all things pink. But, after a CT-scan of my abdomen showed a shadow it changed. The radiologist really felt that the shadow needed to be checked out so I underwent a sonogram of my right breast looking for any masses. Prior to having the ultrasound so many people told me it was nothing and not to worry.
I really wasn't worried about the ultrasound, I was actually glad I didn't have to have a mammogram. The technician did the ultrasound and left the room for about 10-15 minutes. I was feeling like I was in the clear because she didn't measure anything. But, then she came back and went to a specific area, where she started measuring.
I can't read ultrasounds, but I had enough knowledge to know there wasn't anything she should be measuring in my breast. At that point my heart sank because I knew they saw something on the ultrasound and the shadow they saw on the CT scan was that mass.
Again, she left the room and said she'd be back in a few minutes. This time it seemed she was out of the room for a very long time. Then, all the sudden several people came in the room. The technician, nurses, and the radiologist all came in the room.
The radiologist proceed to tell me that she was very worried about the mass because of it's shape. She also said it would need to be biopsied but she didn't feel comfortable doing it because it was so deep. There was only one other radiologist that could do the biopsy and he was only at the hospital on Tuesdays and Thursdays.
Oddly enough, I was overly calm and numb over the situation. I scheduled the biopsy and prayed a lot. The day of the biopsy I was very nervous and anxious.
The nurse took me into the room and talked me through what would happen. I was told they would give me lidocaine shots and they would use the ultrasound to guide the biopsy. The radiologist would take between 6-8 samples of the tissue mass.
I'm usually a huge fan of lidocaine, but when injected in the breast it was extremely painful. Then, I could feel the needle going in, but I didn't say anything because I wasn't sure what was worse -- more lidocaine or just praying for it to me over. Since it was so deep, the radiologist had a difficult time getting the needle to the area. After taking 2 samples he decided that was all he was going to get because the risks were high for a punctured lung or other complication.
The worst part of the ordeal was waiting for the results. While I waited I prayed a lot and asked my guardian angels to watch over me. Then, I finally got the results and it wasn't cancer! That was the best news I could have ever asked to hear.
I don't think I could have handled cancer and multiple sclerosis. It took me awhile to come to terms with the MS diagnosis, I appeared to be okay but when I was alone I was still struggling with that. I have dealt with several health issues throughout my life, but I really struggled with MS the most.
Saturday, September 13, 2014
My "new" normal....
If there's one thing I've learned about MS over the years it's that multiple sclerosis is unpredictable! I never know if I'll wake up with half my body numb or maybe today is the day the symptoms will get better. Despite the diagnosis of relapsing remitting MS, I've found that after each relapse my body doesn't bounce back to exactly where it was before the relapse.
The worst relapse I had was probably the one that came on Christmas day 2013 after being in the hospital with a spinal hematoma for a week after Thanksgiving. That relapse lasted two months even after I did the three day dose of high steroids and physical therapy. To make matters worse, my right arm was completely paralyzed I could only move my hand which being right handed dominated made it even harder.
Unfortunately, since then I have had several mornings when I woke up to find my arm paralyzed. It has happened 4-5 times since I got full use of my arm back in mid-February. The paralysis also struck my left arm but since it didn't lasts for 24 hours some of the time there wasn't much I could do.
Before something that be considered a relapse the symptom has to be constant for 24 hours. The first 24 hours are always full of anxiety and makes me nervous. Since mid-February every time I had an issue the first thing I did was check the clock.
It became unusual because I started getting MS symptoms along with coughing up mucus. I was fairly certain that the mucus was infected, but I wasn't having a runny nose nor was it bronchitis. The first two times right when I was going to make an appointment with my ENT and the cough along with the mucus was gone. The first time not only was my arm paralyzed, but there was shooting pain from my neck down my arm if I moved a certain way.
I had gone for blood work (normal labs I already had scheduled to check my CBC and iron levels) the day the pain got worse and my hematologist was concerned that my white blood cell count was high. After telling the hematologist about the random coughing events, she ordered the blood work to be redone and an x-ray to check my lungs but the other tests results (5 days after the first blood work).
My arm slowly got better, but it was slow progress. I had talked to my doctor about high dose steroids, which is pretty much the only "treatment" for MS, but I wasn't fired up about taking them again. Steroids can be great, but there are also many dangers you have to be aware of when making a decision. As long as I was getting better I was okay without steroids I was okay with it.
A month or so passed and then MS hit me hard! I had gotten up in the middle of the night and realized my leg was weak and I couldn't walk without assistance. From that moment I was in shear panic mode! I realized I couldn't walk to get a glass of water (which was my attempt at getting up), luckily I found water close to my bed so I didn't have to wake anyone up. The next morning (a Sunday thank goodness!) I realized that I hadn't gotten strength in my leg yet so I called our house phone from my cell.
I was terrified, filled with anxiety, and calmly asking my mom to come help me. At first she didn't understand why I needed help, so as calmly as I could I explained to her that my leg was weak. Luckily we had crutches from a knee surgery I had years ago, but I still made a request that took every part of me to ask: I asked my mom if should could go to CVS and get a cane. Of course she said she would, it still killed me because I'm 26 years old and shouldn't need a cane. But, we both knew it would make it easier to get around.
The week progressed and I developed more MS symptoms. My left arm was paralyzed, my left leg was weak, the right leg was numb and the cough was back. This time the cough and infected mucus was back fast. I also called my neurologist who offered IV steroids, but I have horrible veins. The week this happened was my last iron infusion, which took more than one IV to get it in.
My neurologist was also out of town, so I talked to the nurse who did say I could have steroids if it was something I wanted to try. I pushed it back, but finally went to the ENT about my cough. It turns out I had an upper respitory infection, but it hadn't turned into bronchitis. I was given antibiotics for two weeks, once I told the nurse that she said it would be a good to take the antibiotics for at least the weekend and then reevaluate if I still needed steroids.
I am so lucky!!! I took the five doses of the antibiotics and I was already starting to feel better. While I was still experiencing symptoms they were slowly going away. So now, my I had to worry about the 24 hr rule AND that a small infection can cause an array of MS symptoms.
The more I "know" about this disease the more I don't get how it all works. I have had two brain MRIs this year (in January and July), but neither one showed an active lesion in the area that one "should" have been with the issues I've been having with my arm(s). The MRI I have in January was during my relapse with my arm, but there was not a lesion in the area. However, at that appointment I remember the doctor telling me that I was obviously in a relapse because I couldn't move my arm. Right now it just adds to my confusion and I have a "new" normal that includes my arm issues.
The worst relapse I had was probably the one that came on Christmas day 2013 after being in the hospital with a spinal hematoma for a week after Thanksgiving. That relapse lasted two months even after I did the three day dose of high steroids and physical therapy. To make matters worse, my right arm was completely paralyzed I could only move my hand which being right handed dominated made it even harder.
Unfortunately, since then I have had several mornings when I woke up to find my arm paralyzed. It has happened 4-5 times since I got full use of my arm back in mid-February. The paralysis also struck my left arm but since it didn't lasts for 24 hours some of the time there wasn't much I could do.
Before something that be considered a relapse the symptom has to be constant for 24 hours. The first 24 hours are always full of anxiety and makes me nervous. Since mid-February every time I had an issue the first thing I did was check the clock.
It became unusual because I started getting MS symptoms along with coughing up mucus. I was fairly certain that the mucus was infected, but I wasn't having a runny nose nor was it bronchitis. The first two times right when I was going to make an appointment with my ENT and the cough along with the mucus was gone. The first time not only was my arm paralyzed, but there was shooting pain from my neck down my arm if I moved a certain way.
I had gone for blood work (normal labs I already had scheduled to check my CBC and iron levels) the day the pain got worse and my hematologist was concerned that my white blood cell count was high. After telling the hematologist about the random coughing events, she ordered the blood work to be redone and an x-ray to check my lungs but the other tests results (5 days after the first blood work).
My arm slowly got better, but it was slow progress. I had talked to my doctor about high dose steroids, which is pretty much the only "treatment" for MS, but I wasn't fired up about taking them again. Steroids can be great, but there are also many dangers you have to be aware of when making a decision. As long as I was getting better I was okay without steroids I was okay with it.
A month or so passed and then MS hit me hard! I had gotten up in the middle of the night and realized my leg was weak and I couldn't walk without assistance. From that moment I was in shear panic mode! I realized I couldn't walk to get a glass of water (which was my attempt at getting up), luckily I found water close to my bed so I didn't have to wake anyone up. The next morning (a Sunday thank goodness!) I realized that I hadn't gotten strength in my leg yet so I called our house phone from my cell.
I was terrified, filled with anxiety, and calmly asking my mom to come help me. At first she didn't understand why I needed help, so as calmly as I could I explained to her that my leg was weak. Luckily we had crutches from a knee surgery I had years ago, but I still made a request that took every part of me to ask: I asked my mom if should could go to CVS and get a cane. Of course she said she would, it still killed me because I'm 26 years old and shouldn't need a cane. But, we both knew it would make it easier to get around.
The week progressed and I developed more MS symptoms. My left arm was paralyzed, my left leg was weak, the right leg was numb and the cough was back. This time the cough and infected mucus was back fast. I also called my neurologist who offered IV steroids, but I have horrible veins. The week this happened was my last iron infusion, which took more than one IV to get it in.
My neurologist was also out of town, so I talked to the nurse who did say I could have steroids if it was something I wanted to try. I pushed it back, but finally went to the ENT about my cough. It turns out I had an upper respitory infection, but it hadn't turned into bronchitis. I was given antibiotics for two weeks, once I told the nurse that she said it would be a good to take the antibiotics for at least the weekend and then reevaluate if I still needed steroids.
I am so lucky!!! I took the five doses of the antibiotics and I was already starting to feel better. While I was still experiencing symptoms they were slowly going away. So now, my I had to worry about the 24 hr rule AND that a small infection can cause an array of MS symptoms.
The more I "know" about this disease the more I don't get how it all works. I have had two brain MRIs this year (in January and July), but neither one showed an active lesion in the area that one "should" have been with the issues I've been having with my arm(s). The MRI I have in January was during my relapse with my arm, but there was not a lesion in the area. However, at that appointment I remember the doctor telling me that I was obviously in a relapse because I couldn't move my arm. Right now it just adds to my confusion and I have a "new" normal that includes my arm issues.
No matter what happens this little guy will always have my back. He doesn't care if I have to use a cane, a wheel chair, etc. Snuggles is always with me and he's what keeps me going when I'm having bad days.
Tuesday, August 12, 2014
Gotta have Hope
Since being diagnosed with multiple sclerosis, I've turned to God a lot. In my darkest days, the days the pain was so intense I pray. I know that there is a reason I have MS and that God has a purpose for me and that He'll be there to help me. God gives me the hope that I need to continue this fight, hope is a powerful thing and once it's lost there won't be a reason to fight. It's the smallest amount of hope that keeps me going sometimes, but I always have some hope.
That being said, lately I think my prayers are getting lost in translation, plus I need to make a conscious effort to be careful what I say. Every time my right arm has given me problems since my last relapse (December) I've said I wish it was my left arm. Well, this morning I woke up and my left arm is completely numb and I'm unable to move it. This is exactly how it started with my right arm in December, now I am praying that it goes away on its own and I don't have to take steroids.
Unfortunately my right foot is also numb and swollen. Sunday morning I woke up and tried to get out of bed and realized my right leg was numb. I was unable to walk unassisted, which has never happened to me before. I've had numbness in my right leg before, but never like this. The numbness in my right leg is numb where I can't feel it at all, which thus makes walking very hard. Sunday even when I had crutches to help give me support, I accidentally twisted my ankle when walking. Luckily besides the pain right away it didn't cause any other issues, but I had to be super careful when walking from one place to another.
Until being diagnosed with MS I never knew there could be so many definitions of the word numb. Before MS I defined numb as the tingling, pins and needles feeling when my foot or hand fell asleep and was starting to wake up. Now, after living with MS for over 4 years numbness means so many things. Of course, I still use it to mean that pins and needles feeling when the blood flow starts coming back to my hands/feet. It also means not being able to feel anything at all, like my right foot. Also, I have numbness where you can't really feel what's going on from the inside, but when I touch the area from the outside then I feel the tingling feeling. For example, my left arm is numb and I don't feel anything until I touch it with my right hand. When my right hand touches my left arm I get a tingling sensation, which I consider a type of numbness.
Since being diagnosed with MS a lot has changed, not just my vocabulary but also my passions. Finding out that I had MS was very difficult in the beginning, but now that I've come to terms with this disease I've also become passionate about MS awareness. It started off with joining the MS Walk committee and raising money for MS. Then, last fall I started my mission with our speciality license plate for MS which passed!!! (It is in the process of being designed then it'll be sent to marketing and then out to the public. No worries, I'll definitely announce that!)
Through everything, I still have hope. In my darkest hours, the hope was still there. I think my work with MS and the MS Society has helped me too, it has given me hope too. Sometimes I wonder if God gave me MS because He knows I'm fierce and fight for things I want. It started when I was little, I'd convince my dad I needed things (like Snuggles, my beetle, my pool, a bigger bed, etc). I know the things I convinced my dad I needed were materialistic, but it helped prepare me for this journey. I'm now fighting for MS awareness and legislation that will help others with MS not just me.
That being said, lately I think my prayers are getting lost in translation, plus I need to make a conscious effort to be careful what I say. Every time my right arm has given me problems since my last relapse (December) I've said I wish it was my left arm. Well, this morning I woke up and my left arm is completely numb and I'm unable to move it. This is exactly how it started with my right arm in December, now I am praying that it goes away on its own and I don't have to take steroids.
Unfortunately my right foot is also numb and swollen. Sunday morning I woke up and tried to get out of bed and realized my right leg was numb. I was unable to walk unassisted, which has never happened to me before. I've had numbness in my right leg before, but never like this. The numbness in my right leg is numb where I can't feel it at all, which thus makes walking very hard. Sunday even when I had crutches to help give me support, I accidentally twisted my ankle when walking. Luckily besides the pain right away it didn't cause any other issues, but I had to be super careful when walking from one place to another.
This is how I feel today!
Until being diagnosed with MS I never knew there could be so many definitions of the word numb. Before MS I defined numb as the tingling, pins and needles feeling when my foot or hand fell asleep and was starting to wake up. Now, after living with MS for over 4 years numbness means so many things. Of course, I still use it to mean that pins and needles feeling when the blood flow starts coming back to my hands/feet. It also means not being able to feel anything at all, like my right foot. Also, I have numbness where you can't really feel what's going on from the inside, but when I touch the area from the outside then I feel the tingling feeling. For example, my left arm is numb and I don't feel anything until I touch it with my right hand. When my right hand touches my left arm I get a tingling sensation, which I consider a type of numbness.
Since being diagnosed with MS a lot has changed, not just my vocabulary but also my passions. Finding out that I had MS was very difficult in the beginning, but now that I've come to terms with this disease I've also become passionate about MS awareness. It started off with joining the MS Walk committee and raising money for MS. Then, last fall I started my mission with our speciality license plate for MS which passed!!! (It is in the process of being designed then it'll be sent to marketing and then out to the public. No worries, I'll definitely announce that!)
Through everything, I still have hope. In my darkest hours, the hope was still there. I think my work with MS and the MS Society has helped me too, it has given me hope too. Sometimes I wonder if God gave me MS because He knows I'm fierce and fight for things I want. It started when I was little, I'd convince my dad I needed things (like Snuggles, my beetle, my pool, a bigger bed, etc). I know the things I convinced my dad I needed were materialistic, but it helped prepare me for this journey. I'm now fighting for MS awareness and legislation that will help others with MS not just me.
Wednesday, July 16, 2014
Life with MS
I mentioned in my last post about my bum arm, well my doctor fit me in yesterday to see me and there were more questions by the time we left her office. Here's the situation: my right upper arm is weak and for whatever reason I cannot control it like I should be able to. This happened in December, but I was unable to move my right arm at all! This time I can move from my elbow to my wrist and to make matters worse I'm having sharp pains going down my arm from my shoulder/neck. The pain medicine I'm on for my back pain should help with this pain too, but it's not so that's scary!
During my appointment Tuesday with my neurologist she watched me walk, looked at my eyes, checked my reflexes, and a few other fun things they do during a neurology exam. Then, she said this wasn't "textbook" MS and she's wondering if it's related to my MS at all. Since it's such a specific place and nothing else has been affected it could be a pinched nerve, an infection, or nerve damage. If it were due to MS it would probably affect a larger area because the brain and spinal cord control all the nerves in the body so when there's a lesion it affects several areas because the nerves are bundled.
I go for an MRI Friday afternoon of just my neck to see if I have an active lesion. If it is MS she said it would have to be a nerve in the spinal cord. I do have lesions in my c-spine (the neck), so from my research I could have more lesions in the spinal cord. Either way, it doesn't really change how they are going to handle the situation because there's not much they can do. The main treatment IF it is MS would be steroids, but I did the 3 day steroid treatment in late December and would rather not take that route if I don't have to.
All I can say is welcome to my life, I'm the one who is the difficult patient. I'm the patient that is in the small percentages. Turns out (I learned after the fact) that 3% of patients who get the spinal cord stimulator trials have bleeding once it's removed, yes 3% so I fall in that category! My doctor told me later that I was only his 2nd patient to have this problem and he does trials all the time. I always say I'm only lucky when it comes to bad things. Can I win the lottery or be in 3% who score big at the casino.... of course not! But, this is my life so it could be MS or it could be something else with my arm, only time will tell.
I'm not sure what lesson I'm supposed to be learning BUT since I've been diagnosed with MS I've become more patient, learned that God listens to our prayers, and that I pray most when things are bad and I need that little ray of hope. I always get a sign, my little ray of hope at the right time, but it doesn't mean it's easy. I've learned a lot about myself since getting sick and I've learned to be careful when I pray, this journey is definitely an obstacle course and I'm not in control. So for now I will just try to go with the flow and do the best I can with what I'm given.
But, no matter what happens at the end of the day I have the cutest little boy who absolutely loves me and gives the sweetest kisses! He hates wearing clothes, but this morning he let me put this super cute shirt on him that I just ordered from Ralph Lauren. Yes it's pink, BUT it's for the MS walk he needs something pink/green to show his support!
During my appointment Tuesday with my neurologist she watched me walk, looked at my eyes, checked my reflexes, and a few other fun things they do during a neurology exam. Then, she said this wasn't "textbook" MS and she's wondering if it's related to my MS at all. Since it's such a specific place and nothing else has been affected it could be a pinched nerve, an infection, or nerve damage. If it were due to MS it would probably affect a larger area because the brain and spinal cord control all the nerves in the body so when there's a lesion it affects several areas because the nerves are bundled.
I go for an MRI Friday afternoon of just my neck to see if I have an active lesion. If it is MS she said it would have to be a nerve in the spinal cord. I do have lesions in my c-spine (the neck), so from my research I could have more lesions in the spinal cord. Either way, it doesn't really change how they are going to handle the situation because there's not much they can do. The main treatment IF it is MS would be steroids, but I did the 3 day steroid treatment in late December and would rather not take that route if I don't have to.
All I can say is welcome to my life, I'm the one who is the difficult patient. I'm the patient that is in the small percentages. Turns out (I learned after the fact) that 3% of patients who get the spinal cord stimulator trials have bleeding once it's removed, yes 3% so I fall in that category! My doctor told me later that I was only his 2nd patient to have this problem and he does trials all the time. I always say I'm only lucky when it comes to bad things. Can I win the lottery or be in 3% who score big at the casino.... of course not! But, this is my life so it could be MS or it could be something else with my arm, only time will tell.
I'm not sure what lesson I'm supposed to be learning BUT since I've been diagnosed with MS I've become more patient, learned that God listens to our prayers, and that I pray most when things are bad and I need that little ray of hope. I always get a sign, my little ray of hope at the right time, but it doesn't mean it's easy. I've learned a lot about myself since getting sick and I've learned to be careful when I pray, this journey is definitely an obstacle course and I'm not in control. So for now I will just try to go with the flow and do the best I can with what I'm given.
But, no matter what happens at the end of the day I have the cutest little boy who absolutely loves me and gives the sweetest kisses! He hates wearing clothes, but this morning he let me put this super cute shirt on him that I just ordered from Ralph Lauren. Yes it's pink, BUT it's for the MS walk he needs something pink/green to show his support!
Snuggles Alexander Summers
Saturday, July 12, 2014
Summertime Woes & Worries
This month marks 4 years since I was diagnosed with MS and in October it'll will have be 7 years since my first clinical isolated syndrome, but was misdiagnosed as pinched nerves and carpal tunnel. Over the past 4 years so much as changed, my life has taken a new path. When I was newly diagnosed I got caught up in all the negative emotions that come with any disease. That wasn't never a good place to be because it wasn't helping anything and probably made some things worse.
One of the biggest issues I have is dealing with the summer heat. Since I was little I always loved summer because it's a more relaxed time and beach vacations are always on the top of the list! Some of my favorite childhood memories are from different activities we did during the summer. But, the year I was diagnosed with MS I never knew it would completely change my favorite time of the year.
People with multiple sclerosis have problems when it comes to heat. When I get overheated that's when I have an MS flair up, but in order for it to be considered a true relapse the symptoms must last over 24 hours. The last few summers haven't been really bad, usually it consisted of numbness in my hands, arms, legs, or feet. For many summers the main time I'd have numbness was when we traveled, because it's hard to keep the car at a temperature where I can stay cool.
I'm not sure why, but this summer as been really hard on me with the heat. Plus, the heat intolerance episodes this summer have been more serious than having a numb hand or foot. Since my last relapse that decided to come for Christmas, my right arm has continually given me problems. The initial relapse paralyzed my right arm (it seemed stuck to my right side), I was only able to move my hand. As time went on I was able to move my arm from my hand to my elbow, it eventually took 12 sessions of occupational therapy and over two months to totally regain the strength in my arm.
Unfortunately more and more I wake up unable to use my right arm or have limited usage. This has to be one of the worst parts of MS, going through heat intolerance is always nerve wrecking. This morning was one of those days I woke up to find my arm was very weak and then I couldn't stop coughing. Right now I have to be hopeful that this is heat related and that tonight or tomorrow morning I'll be able to use my arm like usual. As I try to stay positive and convince myself that it'll get better in the back of my mind I always wonder if this time will last longer.
Through my relapses and other issues with symptoms of MS, I've learned about myself and it has changed my life. I'm not saying that MS made me a different person, but I have learned to live for the here and now. Today, I woke up frustrated because of my arm so I knew it had to be a low key day. Days when I feel great I've learned to seize the moment and take advantage of those days, probably too much.
While I usually don't think of MS as a "gift" I will say it's changed me; I don't stress over the small things that don't mean anything and I spend my time wisely. Since I have good days and bad days, I try to do whatever I can. I have become so involved with the MS Society volunteering at different events, I serve on the MS Walk committee, and this year I became a MS advocate. Due to my amazing parents and crappy immune system I'm able to continue my education while spending my "free" time doing whatever I can for the National MS Society.
If you had told me 4 years ago what I'd be doing today I wouldn't believe it! At first I wanted nothing to do with MS, it was something I only told people on a need to know bases. I have grown a lot since them and now I tell anyone and everyone about MS. My family even helps hosts a golf tournament to support the National MS Society and this year will be our 4th annual tournament.
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