It's a year later after my last relapse and it's a time for reflection. For those of you who have been wondering where I've been, I've been swept up in work, school and a bunch of family situations, so I'm apologizing now for not updating nearly enough.
I met with Taft, for my six month visit. Of course, given the release of the latest pill, Gilenya, for MS, I was full of questions. He said there are just too many long term side effects (heart and respiratory), that he wouldn't be putting me on it and that I could never take it if I wanted to get pregnant. His word is enough for me and I'm satisfied with his explanation. What does this mean? It means I go back to doing my rebif injections twice a week and just deal with the side effects and site reactions.
I also asked him about the latest research and findings involving the narrowing of neck veins and it's relation to MS. Frankly, there hasn't been enough research to know exactly *what* this means and secondly, there have been a multitude of complications and even death, eep! But, he said I shouldn't discount it yet but also not to take the first road trip to Buffalo to sign up for the treatment.
I have to say, I am a bit sad though. As of Nov. 1st he is leaving to take a teaching position up at St. Joe's. While this is a great opportunity for him, I feel a bit sad because it's a shame to be losing him. He is a rare breed in the medical field, you can tell he's a person that really cares about his patients and takes the time to learn all he can in order to answer our questions and provide us with the most up-to-date and accurate information. I'll personally miss him because he has a great bedside manner, is charming and really makes me feel at ease, so much so that I can be incredibly honest with him.
How have I been? I've been doing just fine. I, for the most part, have completely bounced back from my last relapse and don't need a walking device for assistance, well other than for times when I'm walking a lot. I've been so incredibly busy with school it's almost consumed all of my free time outside of work but I've only got 16 credits to go, so it's all worth it. Besides that, I've decided to go on to grad school in order to get my J.D. and become a disability lawyer and advocate, especially for patients with MS and those who have been discriminated against by their employer (despite protection from the FMLA Act).
So, here's my question to you all, how are YOU doing?
Tuesday, October 5, 2010
Monday, October 26, 2009
Updates
It's been quite some time since I updated. I've been busy with online classes and physical therapy appointments.
I was starting to feel like my old self again until two days ago. I woke up extremely cold sensitive on my right side and my balance is a bit off which is the usual sign that something is about to go wrong. Thankfully I have an appointment with the Shuk on Tuesday.
I'm getting nervous because I was thinking I'd be going back to work on November 2nd but this might set me back a bit. At least I'm able to breath again though.
Blah!
Maybe something is trying to tell me I shouldn't return to work. I may have to get that number for the lady who helps with disability.
We'll see!
I was starting to feel like my old self again until two days ago. I woke up extremely cold sensitive on my right side and my balance is a bit off which is the usual sign that something is about to go wrong. Thankfully I have an appointment with the Shuk on Tuesday.
I'm getting nervous because I was thinking I'd be going back to work on November 2nd but this might set me back a bit. At least I'm able to breath again though.
Blah!
Maybe something is trying to tell me I shouldn't return to work. I may have to get that number for the lady who helps with disability.
We'll see!
Thursday, September 24, 2009
Shedding a little light on the subject
I wanted to take this opportunity to share with you some images. I'm not an expert on reading MRIs and I'm really not sure what I'm looking for. When I received my first series of MRIs (the old fashioned prints) I really wanted to be able to see what the doctor was talking about. I asked him to point the lesion out to me. Now, this is an MRI image off the disk they gave me the last time (9/10). This is the only lesion I can positively identify because it was my very first.
It is located on my c-spine and it's the bastard that started all my troubles!
I wanted to show you images of the lesions on my brain but I'm really not sure what they look like. I think for the sake of research and to be completely knowledgeable I will have to harass Taft into giving me a play by play. These lesions are the most important for diagnosis. In order to have a confirmed case of multiple sclerosis there has to be lesions present on your brain (the first flare-up only presented an image on my c-spine, but they treated me for MS because if it looks like MS, feels like MS, more than likely you've got MS).
The reason I'm having a hard time recovering from this last flare-up was because of the size of the lesion. I know nothing about how lesions on the thoracic spine presents itself. I can only assume based on my c-spine lesion that it's that giant white mass staring back at me. I can also assume that that's why I'm having such a terrible time with the dreaded MS hug!
When I find out more from Taft at my next appointment (in October) I'll be sure to ask him to explain to me exactly what it is that I'm looking at. I think in order to truly understand this disease you have to be a sponge! You have to absorb as much knowledge as you can in order to truly be able to take a stand against this disease!
It is located on my c-spine and it's the bastard that started all my troubles!
I wanted to show you images of the lesions on my brain but I'm really not sure what they look like. I think for the sake of research and to be completely knowledgeable I will have to harass Taft into giving me a play by play. These lesions are the most important for diagnosis. In order to have a confirmed case of multiple sclerosis there has to be lesions present on your brain (the first flare-up only presented an image on my c-spine, but they treated me for MS because if it looks like MS, feels like MS, more than likely you've got MS).
The reason I'm having a hard time recovering from this last flare-up was because of the size of the lesion. I know nothing about how lesions on the thoracic spine presents itself. I can only assume based on my c-spine lesion that it's that giant white mass staring back at me. I can also assume that that's why I'm having such a terrible time with the dreaded MS hug!
When I find out more from Taft at my next appointment (in October) I'll be sure to ask him to explain to me exactly what it is that I'm looking at. I think in order to truly understand this disease you have to be a sponge! You have to absorb as much knowledge as you can in order to truly be able to take a stand against this disease!
A Play By Play
I met with Taft, Shukri's PA and it was a very informative appointment.
By far the most important thing we discussed was the option of hand controls for my car. I told him how I had talked to the physical therapist and I wanted to look into getting hand controls for my car. He said that it really isn't something they just put in your car and send you off on your own. He is putting me in contact with Rochester Rehabilitation Center which works with the DMV and trains you on how to properly use assisted driving devices and how to deal with a disability while out on the road. I've looked at the website and it looks like a great program so I look forward to hearing from them and getting started on the road to driving freedom.
He mentioned that this particular lesion was very large and that's why I haven't noticed any improvement as of yet. He wants me to continue the prednisone until it's all gone and also continue on the rebif injections. He remains optimistic that the rebif should begin to work soon (he said it takes about an average of three months for it to begin to be effective).
I brought up the returning back to work and he pretty much agreed that I'm not going to be ready to return on the first. He wanted me to stay out an additional TWO months! I told him I'd meet him half way and he'll reevaluate my condition towards the end of next month and decide how much longer I need to stay out from there. He feels that between the fatigue, leg symptoms, the fact that I haven't had any physical therapy yet and the breathing issues it's a bad idea for me to return to work so soon. So, my dear friends, it looks like you'll be stuck with my constant updates for a bit longer while I continue on the road to recovery.
He asked me how my bladder was doing and I immediately began talking about the lack of bowel movements (I know.. I only heard what I wanted to hear). He gave me a sample pack of amitiza, a drug used to treat chronic constipation in adults. I don't know if it's working yet as I just took the pill but we'll see shortly!
Another interesting thing we discussed is the issue of health insurance reform. He thinks I should become an advocate since I know first hand the type of hoops you have to jump through just to get a condition treated or to get the medication I need. It's an idea but with everything else that is going on, I just don't think I have the time or am in the right frame of mind to deal with that right now.
Other than that I spent the rest of the afternoon with my dad, Kel and my parent's Boston Terriers, Pepper Anne and Tabitha. We rode around in my dad's new vehicle and it was nice to get out and about for a while. The only problem now is that I'm exhausted and needing a nap!
By the way, I'm starting physical therapy next week, not this week. My bad!
By far the most important thing we discussed was the option of hand controls for my car. I told him how I had talked to the physical therapist and I wanted to look into getting hand controls for my car. He said that it really isn't something they just put in your car and send you off on your own. He is putting me in contact with Rochester Rehabilitation Center which works with the DMV and trains you on how to properly use assisted driving devices and how to deal with a disability while out on the road. I've looked at the website and it looks like a great program so I look forward to hearing from them and getting started on the road to driving freedom.
He mentioned that this particular lesion was very large and that's why I haven't noticed any improvement as of yet. He wants me to continue the prednisone until it's all gone and also continue on the rebif injections. He remains optimistic that the rebif should begin to work soon (he said it takes about an average of three months for it to begin to be effective).
I brought up the returning back to work and he pretty much agreed that I'm not going to be ready to return on the first. He wanted me to stay out an additional TWO months! I told him I'd meet him half way and he'll reevaluate my condition towards the end of next month and decide how much longer I need to stay out from there. He feels that between the fatigue, leg symptoms, the fact that I haven't had any physical therapy yet and the breathing issues it's a bad idea for me to return to work so soon. So, my dear friends, it looks like you'll be stuck with my constant updates for a bit longer while I continue on the road to recovery.
He asked me how my bladder was doing and I immediately began talking about the lack of bowel movements (I know.. I only heard what I wanted to hear). He gave me a sample pack of amitiza, a drug used to treat chronic constipation in adults. I don't know if it's working yet as I just took the pill but we'll see shortly!
Another interesting thing we discussed is the issue of health insurance reform. He thinks I should become an advocate since I know first hand the type of hoops you have to jump through just to get a condition treated or to get the medication I need. It's an idea but with everything else that is going on, I just don't think I have the time or am in the right frame of mind to deal with that right now.
Other than that I spent the rest of the afternoon with my dad, Kel and my parent's Boston Terriers, Pepper Anne and Tabitha. We rode around in my dad's new vehicle and it was nice to get out and about for a while. The only problem now is that I'm exhausted and needing a nap!
By the way, I'm starting physical therapy next week, not this week. My bad!
Wednesday, September 23, 2009
To the Shuk's and Aqua Therapy
Tomorrow is my first day of physical therapy. We're starting off with aqua therapy in the shallow end of the pool because I'm still experiencing the MS hug. My consult with the physical therapist was Tuesday and although the therapy looks promising his thoughts weren't. He told me I want to look into getting hand controls for my car in the event that I may never be able to drive again in the traditional manner. Are you kidding me? First off, I hear it's expensive and secondly, what, what, what? I'm sorry sir but I have more hope than that. It is getting a little tiring depending on other people to take me here and there though. I miss the freedom of hopping into my car and driving off into the sunset if the mood strikes me. Life with MS, I will never get used to this.
I also have an appointment with the Shuk's PA tomorrow and we're supposed to reevaluate how I'm doing and whether I will be able to go back to work on the 1st. I'm a little apprehensive about going back, I just wish I had a little bit more time to do some more physical therapy first. In the house I'm okay walking a little bit without my walker, although I'm still a bit clumsy on my feet but walking more than 10 feet and my legs are dragging behind me, I can't breath and I just want to take a nap. The fatigue is going to kill me. My dad is going to the appointment with me tomorrow and I might ask him to sit in the waiting room because I'm afraid I won't be honest with the Taft if he's there. I'm afraid he'll be ashamed of me if I tell the doctor I need more time before I'm ready. It's bad enough that I had to up my baclofen because the spasms are so bad when I wake up in the morning.
I've barely left the house since I got out of the hospital. The first day I was free I ran some errands with Kristen but since then I've really only gone to the Christmas Tree Shop twice (to pick up a couple sets of curtains since my neighbor's grandkids have taken to peeking through the sheers in my living room) and spent two days hanging out on Kristen's couch so I haven't really had the opportunity to gauge how I'm really feeling.
TMI time! I'm still having issues with constipation, which is another thing I will have to address when I meet with Taft tomorrow. It's an embarrassing issue and I hate having to bring it up with him but I've read the complications online and it's a bit scary. I used to be pretty regular, up to twice a day, now I'm lucky if I go once every four days. I feel like I'm incredibly bloated and it's an awful feeling. Blah. We'll see what he has to say. Sorry if that grosses anyone out, just trying to keep it real. Besides, my hope is that this blog may be helpful to someone else who may be newly diagnosed and not really sure what to expect. I know what that's like, being frightened and not really sure if what you were feeling or going through is because of the MS. Just so you know, you aren't alone. <3
Tomorrow I wind down to three prednisone pills a day and I'm feeling like I'm not where I should be at this point. Usually by this time I'm dancing around, feeling full of energy and almost back to my old self. Not this time. More and more I'm beginning to feel that most of these symptoms will be permanent. I know it's because of the location of the lesions this time but it absolutely sucks! I want to feel normal again. I want the MS hug to go away and I want to be able to walk. When I was out in public the other day some little boy laughed at me because I walk funny and I'm using a walker. I had to resist the urge to find the boys mother and slap her silly for not teaching her child not to laugh at the disabled. I can't say my feelings were hurt, because they weren't, I know children are cruel, I just thought it was inappropriate. I see people who stare and give me weird looks but I don't take it to heart. People gawk at what they don't understand. If this disease has taught me anything is it's okay to cry, it's okay to feel sorry for yourself, at first, but eventually you have to wake yourself up and be strong because it's the only way you are going to get better!
I also have an appointment with the Shuk's PA tomorrow and we're supposed to reevaluate how I'm doing and whether I will be able to go back to work on the 1st. I'm a little apprehensive about going back, I just wish I had a little bit more time to do some more physical therapy first. In the house I'm okay walking a little bit without my walker, although I'm still a bit clumsy on my feet but walking more than 10 feet and my legs are dragging behind me, I can't breath and I just want to take a nap. The fatigue is going to kill me. My dad is going to the appointment with me tomorrow and I might ask him to sit in the waiting room because I'm afraid I won't be honest with the Taft if he's there. I'm afraid he'll be ashamed of me if I tell the doctor I need more time before I'm ready. It's bad enough that I had to up my baclofen because the spasms are so bad when I wake up in the morning.
I've barely left the house since I got out of the hospital. The first day I was free I ran some errands with Kristen but since then I've really only gone to the Christmas Tree Shop twice (to pick up a couple sets of curtains since my neighbor's grandkids have taken to peeking through the sheers in my living room) and spent two days hanging out on Kristen's couch so I haven't really had the opportunity to gauge how I'm really feeling.
TMI time! I'm still having issues with constipation, which is another thing I will have to address when I meet with Taft tomorrow. It's an embarrassing issue and I hate having to bring it up with him but I've read the complications online and it's a bit scary. I used to be pretty regular, up to twice a day, now I'm lucky if I go once every four days. I feel like I'm incredibly bloated and it's an awful feeling. Blah. We'll see what he has to say. Sorry if that grosses anyone out, just trying to keep it real. Besides, my hope is that this blog may be helpful to someone else who may be newly diagnosed and not really sure what to expect. I know what that's like, being frightened and not really sure if what you were feeling or going through is because of the MS. Just so you know, you aren't alone. <3
Tomorrow I wind down to three prednisone pills a day and I'm feeling like I'm not where I should be at this point. Usually by this time I'm dancing around, feeling full of energy and almost back to my old self. Not this time. More and more I'm beginning to feel that most of these symptoms will be permanent. I know it's because of the location of the lesions this time but it absolutely sucks! I want to feel normal again. I want the MS hug to go away and I want to be able to walk. When I was out in public the other day some little boy laughed at me because I walk funny and I'm using a walker. I had to resist the urge to find the boys mother and slap her silly for not teaching her child not to laugh at the disabled. I can't say my feelings were hurt, because they weren't, I know children are cruel, I just thought it was inappropriate. I see people who stare and give me weird looks but I don't take it to heart. People gawk at what they don't understand. If this disease has taught me anything is it's okay to cry, it's okay to feel sorry for yourself, at first, but eventually you have to wake yourself up and be strong because it's the only way you are going to get better!
Sunday, September 20, 2009
A Rebif Tweak
I had a bit of a tweak out this evening when I went to take my rebif. I had convinced myself it was going to hurt really really bad. I'm not even sure where this thought came from. Maybe it was because both Kel and Kristen were watching me. I hyped myself all up. I had originally planned on injecting it into my arm but the fear of that quick pinch freaked me out so much that I ended up injecting it into my belly. I don’t know what the fuss was all about- I didn’t even end up feeling it! Maybe it’s the collective sucking in breath by those around you that gets you going!
There’s still no real progress from the initial symptoms, except that the band around my waist doesn’t feel as tight, or perhaps I’m just getting used to it. I still have trouble breathing if I bend over or if I’m in the bathroom with the shower running (heat). I’m using my walker out in public and I’ve noticed that for about ten minutes my walking is okay (better than what it was) but after that it all goes down hill and my left leg begins to drag behind me.
When I stand up I tilt to the side. I think it’s because of the tightness in my midsection. It keeps me from really getting comfortable!
Sorry for the fragmented post. I’m exhausted but the fear of waking up with muscle spasms again has me quivering in fear. I can deal with pain in normal circumstances but any MS related pain has me calling foul!
That odd symptom I seem to only get when I’m on solumedrol came back in full force today! The last time I went to the endocrinologist I had mentioned to her that I seem to only get my period after I’ve had a round of IV steroids and sure enough after this round I’m at it again! There HAS to be some connection between the two (adrenal fatigue? Cushing’s?) but everyone just chooses to ignore it. It’s just odd that with everyone else the solumedrol makes their period go MIA and it makes me have it (and it’s the only thing that works too, otherwise I’m barren!). Maybe I should get a second opinion. The body is an interesting piece of work and I can’t help but think that the MS, the PCOs and this whole solumedrol/period thing are all related! I’m sure there can be one main cause for everything and as soon as I figure out what it is I’ll be cured and I can go back to living my life!
There’s still no real progress from the initial symptoms, except that the band around my waist doesn’t feel as tight, or perhaps I’m just getting used to it. I still have trouble breathing if I bend over or if I’m in the bathroom with the shower running (heat). I’m using my walker out in public and I’ve noticed that for about ten minutes my walking is okay (better than what it was) but after that it all goes down hill and my left leg begins to drag behind me.
When I stand up I tilt to the side. I think it’s because of the tightness in my midsection. It keeps me from really getting comfortable!
Sorry for the fragmented post. I’m exhausted but the fear of waking up with muscle spasms again has me quivering in fear. I can deal with pain in normal circumstances but any MS related pain has me calling foul!
That odd symptom I seem to only get when I’m on solumedrol came back in full force today! The last time I went to the endocrinologist I had mentioned to her that I seem to only get my period after I’ve had a round of IV steroids and sure enough after this round I’m at it again! There HAS to be some connection between the two (adrenal fatigue? Cushing’s?) but everyone just chooses to ignore it. It’s just odd that with everyone else the solumedrol makes their period go MIA and it makes me have it (and it’s the only thing that works too, otherwise I’m barren!). Maybe I should get a second opinion. The body is an interesting piece of work and I can’t help but think that the MS, the PCOs and this whole solumedrol/period thing are all related! I’m sure there can be one main cause for everything and as soon as I figure out what it is I’ll be cured and I can go back to living my life!
Friday, September 18, 2009
All that’s missing is some progress.
I just wanted to type up a quick update before I hobbled off to bed.
I woke up this morning with muscle spasms in my left leg (charlie horse), one right after the other. I was alone and it was the most dreadful thing I’ve experienced in quite some time! Literally as soon as one would die down enough for me to breath the next would come and I’d have to start the process all over again. If you’ve never had one, you’re lucky, because they are the most painful things you will ever experience.
This went on for about a half hour (not exaggerating) and finally subsided after twisting my leg this way and that, finding the right combination to end the flow of tightness.
Other than that there really hasn’t been any changes. I am trying to take it easy, I spent most of the last two days at Kristen’s house, watching TV. I’m resting, it’s what the doctor wanted, it’s the least I could do!
I woke up this morning with muscle spasms in my left leg (charlie horse), one right after the other. I was alone and it was the most dreadful thing I’ve experienced in quite some time! Literally as soon as one would die down enough for me to breath the next would come and I’d have to start the process all over again. If you’ve never had one, you’re lucky, because they are the most painful things you will ever experience.
This went on for about a half hour (not exaggerating) and finally subsided after twisting my leg this way and that, finding the right combination to end the flow of tightness.
Other than that there really hasn’t been any changes. I am trying to take it easy, I spent most of the last two days at Kristen’s house, watching TV. I’m resting, it’s what the doctor wanted, it’s the least I could do!
Subscribe to:
Posts (Atom)