I'm a little scared that I haven't had any sign that my vision may recover. What makes it worse is when I look on the internet and read all the stats about the recovery chances at this level of progression. I know.. that someday I'll probably be completely blind, since with each flare-up I manage to get optical neuritis, but I'm not ready for it yet. Please, don't let it be now. I'm so fearful that I'll never be able to see out of my left eye again and that I won't be able to drive.
Chrissey would say I worry too much, but I think in this matter, I have a right to worry. What can I do if I go blind? How depressed I would be if I could never gaze on beautiful works of art or some cinematic piece? I know it happens to people, but after 27 years of seeing, I don' think I could cope. It would more than likely mean flushing a lot of my dreams down the toilet. There's one dream I don't think I could ever give up though. I think, despite it all, even if I was blind and unable to function with my own limbs, I'd still try to go for my dream of being a disability lawyer. I want to help people like me. I want to help others inflicted with MS so that they may have the chance to live a better life than I ever could have! I want to make sure that these people are treated fairly in the workplace, unlike I was by certain higher ups that I won't mention here. No one should ever feel like they aren't good enough because they were born with a disease like MS.
I think the real problem lies in the fact that someone knows at least one person with MS. They then say, oh yeah, my Great Aunt Shirley had MS and lived a long, healthy life. Hunny, I'm not your Great Aunt Shirley. The thing with MS is it affects people differently. You can't group all MS sufferers into one large category and expect the definition to fit. It doesn't work like that. For me, I have to keep my immune system weak because the moment it gets too strong I know I'm in for a relapse. Therefore, I catch every germ you bring to the office. I catch every bug that goes around. I'm a connoisseur of sickness! Mention what's going around lately and more than likely I've had it, far worse than you will ever get it.
But, I don't think I'm jaded. Although, I will say, I do shrug it off a bit as if it were my lot in life that I have to face. But beneath that shrug, I'm terrified. Terrified of where I will be in five years, in ten years and if I'll make it another twenty years. I know that if I ever find myself stuck in a bed, using a respiratory to breathe and just existing I will not allow myself to continue that way. Never. I don't think that's anyway to live. That's one of the reasons I moved to Oregon is because I know it's a state that allows assisted suicide for those who are capable of doing it. I want to be able to have that option! The option of choosing to live my life how I want to, not how the government says I am to live.
I didn't mean to go into such a dark place with my thoughts, but this is what I think about when I'm given a moment alone. A moment of self reflection like I had so much of when I was on the road. Sure, I want to be like everyone else and have the freewill to do anything I want, but unfortunately, I'm not able to at the moment. The thought brings tears to my eyes that I'm so bound by this disease. When will I ever get my chance of freedom? I thought moving to Portland was my chance at discovering myself and my freewill but how quickly that all can change in a day or two.
Bah, perhaps I'm just being foolish or throwing my own pity party. It's not like I mean to, but this just happens to be the place where my mind wanders too. I also desperately want to wash my hair and take a shower, but with this IV in my arm, it's not the easiest of chores. Therefore, I'll stick with being scummy!
Scummily yours,
Desiree
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Saturday, January 22, 2011
Tuesday, October 5, 2010
A Year Later...
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?
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?
Thursday, September 24, 2009
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!
Monday, September 14, 2009
Last day in the hospital...
Today's my last day in the hospital and I'm somewhat relieved but at the same time I'm a little apprehensive about going back to my real life. My doctor has decided he wants me out of work for two weeks so nothing will get in the way of my physical therapy and outpatient care (they like to call me a non-compliant patient because I never do follow-up visits or physical therapy because I'm usually rushing back to work). I have the paperwork signed for temporary disability parking and I will be getting a prescription for a walker as soon as my discharge paperwork is set in motion.
I hope I've been a good little hospital patient. I'm not used to being waited on and I have a hard time turning that control over. A lot of the nurses like to joke with me that I do a lot of their work for them. I just explain to them that I know there are patients who are worse off than me so I'm okay with being independent. I've got to master it all on my own for when I go home anyways so it's great practice.
I'm still having issues with the MS hug, especially when walking so the walker will be a great improvement, this way if I lose my breath I'll be able to clutch the walker for support instead of falling into the wall or grabbing the nearest object. Physical therapy is a bit annoying, but it's a necessary evil if I want to be able to walk normal again. I've noticed some improvement since doing my laps even though my left foot is still dragging.
I dropped my course load for school down to twelve credits instead of fourteen in the hopes that I will be able to concentrate better. I'm almost tempted to contact most of my professors and let them know that I may be experiencing a bit of MS brain fog over the next few weeks while I taper off on the prednisone but I'm not sure if I should share that information. What would you do?
The good news is my blood glucose readings were far better than they have been (152) despite Kelly sneaking me in some sugar yesterday. This might be on the verge of TMI, but the only really bad side effect from the solumedrol is the constipation! I have yet to go and I have been here since Friday morning. I feel like I'm going to explode. Despite the constipation the scale down the hall that I passed last night while doing my laps says I've lost some weight so I'm really excited about that. I wish I could tell if my pants were loose but I can't right now because of the hug everything feels tight. I plan on sneaking over to the scale in a few minutes just to get a final weigh in before I boot scoot out of here.
I looked at myself in the mirror today and my face is red, I mean really red, but I don't seem to have any puffiness going on, which is a good thing, who needs a moon face when you are already fat!
I have to say that out of all the times I've been on solumedrol this has to be the easiest time I've had. Maybe it was because of the hospital stay. I was able to be comfortable, I didn't have to constantly get up and take care of things around the house and I was just able to get well. I think I prefer this method, despite my obvious lack of being cooped up. It was also nice not to have to worry about cleaning, pets, cooking, bills, etc. I just wish I had a copy of my budget here with me because I have no idea what bills I'm supposed to be paying in the next two weeks. I guess I will just have to play it by ear and see what happens. Doing it all by the seat of my pants! That's the way to live life with MS I suppose!
I hope I've been a good little hospital patient. I'm not used to being waited on and I have a hard time turning that control over. A lot of the nurses like to joke with me that I do a lot of their work for them. I just explain to them that I know there are patients who are worse off than me so I'm okay with being independent. I've got to master it all on my own for when I go home anyways so it's great practice.
I'm still having issues with the MS hug, especially when walking so the walker will be a great improvement, this way if I lose my breath I'll be able to clutch the walker for support instead of falling into the wall or grabbing the nearest object. Physical therapy is a bit annoying, but it's a necessary evil if I want to be able to walk normal again. I've noticed some improvement since doing my laps even though my left foot is still dragging.
I dropped my course load for school down to twelve credits instead of fourteen in the hopes that I will be able to concentrate better. I'm almost tempted to contact most of my professors and let them know that I may be experiencing a bit of MS brain fog over the next few weeks while I taper off on the prednisone but I'm not sure if I should share that information. What would you do?
The good news is my blood glucose readings were far better than they have been (152) despite Kelly sneaking me in some sugar yesterday. This might be on the verge of TMI, but the only really bad side effect from the solumedrol is the constipation! I have yet to go and I have been here since Friday morning. I feel like I'm going to explode. Despite the constipation the scale down the hall that I passed last night while doing my laps says I've lost some weight so I'm really excited about that. I wish I could tell if my pants were loose but I can't right now because of the hug everything feels tight. I plan on sneaking over to the scale in a few minutes just to get a final weigh in before I boot scoot out of here.
I looked at myself in the mirror today and my face is red, I mean really red, but I don't seem to have any puffiness going on, which is a good thing, who needs a moon face when you are already fat!
I have to say that out of all the times I've been on solumedrol this has to be the easiest time I've had. Maybe it was because of the hospital stay. I was able to be comfortable, I didn't have to constantly get up and take care of things around the house and I was just able to get well. I think I prefer this method, despite my obvious lack of being cooped up. It was also nice not to have to worry about cleaning, pets, cooking, bills, etc. I just wish I had a copy of my budget here with me because I have no idea what bills I'm supposed to be paying in the next two weeks. I guess I will just have to play it by ear and see what happens. Doing it all by the seat of my pants! That's the way to live life with MS I suppose!
Sunday, September 13, 2009
Final Evening in the Hospital
It's 11:30 pm. and I'm partially awake. Kel and I got into a little tiff today at the hospital, I don't know if it's the roid rage or just the frustration of still being here. It could also be the restricted diet they have me on. I'm having the worst cravings for sugar and caffeine but unfortunately the solumedrol is causing me to have really high blood glucose levels. Yesterday I clocked in at 232 and today it was 181! Despite my PCOs my glucose levels are usually pretty normal (fasting glucose is in the low 80's) so I'm kind of shocked by how the steroids have really affected my body.
I guess that's why it's good that I'm in the hospital because it's opening up the possibility of getting to the root of all my troubles! Too bad there's only one more day left.
My head is swimming right now. Kel snuck me in something with sugar and now I've got a serious headache so I'm hoping this isn't some diabetic shock symptom. Blah! I don't know what to do.
There is some form of silver lining.. I think I've managed to lose some weight! I guess restricted hospital diets aren't too bad, just not my cup of tea. I've never managed being told what to do very well so maybe it's just an act of rebellion.
In other news I have several people, the Shuk (my neuro) included, telling me my best bet would be to go on disability now that I have two new lesions on my spine and that because it's a progressive disease I really need to cut the stress out of my life. Unfortunately my biggest stressor in my life is my job. Who knows what I should do?
I guess that's why it's good that I'm in the hospital because it's opening up the possibility of getting to the root of all my troubles! Too bad there's only one more day left.
My head is swimming right now. Kel snuck me in something with sugar and now I've got a serious headache so I'm hoping this isn't some diabetic shock symptom. Blah! I don't know what to do.
There is some form of silver lining.. I think I've managed to lose some weight! I guess restricted hospital diets aren't too bad, just not my cup of tea. I've never managed being told what to do very well so maybe it's just an act of rebellion.
In other news I have several people, the Shuk (my neuro) included, telling me my best bet would be to go on disability now that I have two new lesions on my spine and that because it's a progressive disease I really need to cut the stress out of my life. Unfortunately my biggest stressor in my life is my job. Who knows what I should do?
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