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.
Subscribe to:
Posts (Atom)
