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!
Monday, October 26, 2009
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!
Wednesday, September 16, 2009
Musings of the day..
I'm not sure how I feel today.
In the past I've realized that by the last dosage of the solumedrol I'm usually feeling pretty good. That's not the case this time. I've come to the realization that some of these symptoms might be for the long term. This scares me.
I've come to acknowledge the fact that if these symptoms are now permanent for the rest of my life I will be forced to change my life in so many ways. I know that working might not be an option since the high doses of medication I'm on just to get me through the day make me so dizzy and hazy I'm no good to anyone (you should have seen me trying to do my homework earlier). I know that I will become a burden on everyone I love and hold dear. I may never be able to drive again, which, I can't even fathom that right now without feeling this horrible ache inside my stomach. I have to get real with myself. I've been in denial for so long and all it got me was a stiff wake-up call and a tumble in the office earlier where I couldn't get up without almost breaking something. I have to face the facts. I have MS, and it's a progressive disease and the fact that this is my second flare-up in a year is an indication that something is NOT right in my life. I just have to figure out what that is!
I'm stuck on the couch for right now. I really scared myself earlier when I fell and there was no one here to help me up. When I went to stand my legs were awkward and in the wrong position and I could have broken something, where would that have left me? I would have been stuck there, in pain (if I even felt it), on the floor, waiting for someone to notice that I didn't answer a phone call or I didn't answer an incoming text. This is my reality. This is something I have to come to terms with.
I'm not used to depending on other people. It's killing me. I have this urge to pick up and straighten up around here but every time I stand my legs sway and I'm forced back down into my seat. I can't deal with this. I never pictured at 26 I would be contemplating going out on disability, permanently, and looking into getting a Help Link System installed in my home (thankfully because Kel works for the company they said we could have it for free). I'm torn. I feel if I go out on disability I will forgo so much and Kel and I will have to scrape by for the rest of our lives. That's not fair. I also feel if I do that then there will be so many people who will be disappointed with me. You have to earn a living, you shouldn't live off the system. I don't want to be one of these fat lazy slobs sitting home on disability with no hopes for the future and no real indication of what they want to do with their life. This wasn't the plan. There is a monkey wrench shoved into the middle of it and I need to come up with an alternative solution.
There are two things I know for certain: I have to get counseling and I have to have a serious sit-down with someone who knows all about the way disability works and weigh all my options. As I said, there is a true chance here that I may never fully recover use of my legs, or they may surprise me but either way, I HAVE to be prepared! I wish there was a chance I could work from home, this way I could sit in my living room, a few feet from the bathroom and type, type, type in the comfort of my own Pjs and still be an asset to the company. If only, if only, it were that simple!
In the past I've realized that by the last dosage of the solumedrol I'm usually feeling pretty good. That's not the case this time. I've come to the realization that some of these symptoms might be for the long term. This scares me.
I've come to acknowledge the fact that if these symptoms are now permanent for the rest of my life I will be forced to change my life in so many ways. I know that working might not be an option since the high doses of medication I'm on just to get me through the day make me so dizzy and hazy I'm no good to anyone (you should have seen me trying to do my homework earlier). I know that I will become a burden on everyone I love and hold dear. I may never be able to drive again, which, I can't even fathom that right now without feeling this horrible ache inside my stomach. I have to get real with myself. I've been in denial for so long and all it got me was a stiff wake-up call and a tumble in the office earlier where I couldn't get up without almost breaking something. I have to face the facts. I have MS, and it's a progressive disease and the fact that this is my second flare-up in a year is an indication that something is NOT right in my life. I just have to figure out what that is!
I'm stuck on the couch for right now. I really scared myself earlier when I fell and there was no one here to help me up. When I went to stand my legs were awkward and in the wrong position and I could have broken something, where would that have left me? I would have been stuck there, in pain (if I even felt it), on the floor, waiting for someone to notice that I didn't answer a phone call or I didn't answer an incoming text. This is my reality. This is something I have to come to terms with.
I'm not used to depending on other people. It's killing me. I have this urge to pick up and straighten up around here but every time I stand my legs sway and I'm forced back down into my seat. I can't deal with this. I never pictured at 26 I would be contemplating going out on disability, permanently, and looking into getting a Help Link System installed in my home (thankfully because Kel works for the company they said we could have it for free). I'm torn. I feel if I go out on disability I will forgo so much and Kel and I will have to scrape by for the rest of our lives. That's not fair. I also feel if I do that then there will be so many people who will be disappointed with me. You have to earn a living, you shouldn't live off the system. I don't want to be one of these fat lazy slobs sitting home on disability with no hopes for the future and no real indication of what they want to do with their life. This wasn't the plan. There is a monkey wrench shoved into the middle of it and I need to come up with an alternative solution.
There are two things I know for certain: I have to get counseling and I have to have a serious sit-down with someone who knows all about the way disability works and weigh all my options. As I said, there is a true chance here that I may never fully recover use of my legs, or they may surprise me but either way, I HAVE to be prepared! I wish there was a chance I could work from home, this way I could sit in my living room, a few feet from the bathroom and type, type, type in the comfort of my own Pjs and still be an asset to the company. If only, if only, it were that simple!
Monday, September 14, 2009
A curious case of the ‘why me’s?’
Now that I’m home and everyone has gone home or gone to bed I really feel the need to have a bit of a breakdown, if I may.
I’ve had to wear a brave face for the doctors and nurses and family and friends and really all I want to do is cry! My physical therapist told me today that it’s great to see someone who is so optimistic but in reality I’m screaming on the inside!
I have to stay strong for Kel because I don’t think he could really handle the thoughts inside my head; I have to stay strong for Kristen because up until recently she didn’t know that this is a progressive disease and I’m going to get worse. I have to stay strong even for those family members who still deny something is wrong even though they have heard it straight from my doctor’s mouth.
Where is the source of my strength!
I’m constantly stuck between two people who I love deeply but hate each other. Causing me stress. I have family members who are in denial. Work just doesn’t understand. I don’t even think I truly understand the severity of my situation.
I just want to pack up and head out to where no one knows me and no one can find me and lock myself away. I think that’s truly the only way I am ever going to avoid stress.
I know for a fact that Kel aggravated the situation with the little stunt he pulled last week and I know even now I’m much worse since I came home from the hospital. If they can’t listen to the doctor telling them I need to avoid stress then I really don’t know what will work at this point. How do I decide between the people I love and my health?
I don’t think any of this is really fair. I don’t think any of this is even right.
I have to bring myself to the point where I stand up in my big girl pants and say ‘enough is enough! I won’t let you drag my health through the mud any longer!’ I’ll do that just as soon as I find a pair in my size…
I’ve had to wear a brave face for the doctors and nurses and family and friends and really all I want to do is cry! My physical therapist told me today that it’s great to see someone who is so optimistic but in reality I’m screaming on the inside!
I have to stay strong for Kel because I don’t think he could really handle the thoughts inside my head; I have to stay strong for Kristen because up until recently she didn’t know that this is a progressive disease and I’m going to get worse. I have to stay strong even for those family members who still deny something is wrong even though they have heard it straight from my doctor’s mouth.
Where is the source of my strength!
I’m constantly stuck between two people who I love deeply but hate each other. Causing me stress. I have family members who are in denial. Work just doesn’t understand. I don’t even think I truly understand the severity of my situation.
I just want to pack up and head out to where no one knows me and no one can find me and lock myself away. I think that’s truly the only way I am ever going to avoid stress.
I know for a fact that Kel aggravated the situation with the little stunt he pulled last week and I know even now I’m much worse since I came home from the hospital. If they can’t listen to the doctor telling them I need to avoid stress then I really don’t know what will work at this point. How do I decide between the people I love and my health?
I don’t think any of this is really fair. I don’t think any of this is even right.
I have to bring myself to the point where I stand up in my big girl pants and say ‘enough is enough! I won’t let you drag my health through the mud any longer!’ I’ll do that just as soon as I find a pair in my size…
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?
Saturday, September 12, 2009
Hospital Day Two
Again with the brain fog! If the solumedrol wasn't helping I would be cursing it to the high heavens. The good news is I can breath, except when I start moving around.
I had a little physical therapy today and could barely get down the hallway because I'm so stiff! I hate this. They have me on a restricted diet (if you can even call hospital food, real food), it's so disgusting. I'm just ready to go home now. Is it Monday yet? I'm so bored and lonely and I miss my fur kids -.-
Blah. Now the tears start.
My doctor came to see me today and he said for some reason my glucose levels are through the roof, even though my readings last month were normal. I really can't help but think there has to be some relationship between the MS, PCOs and these readings they've been getting.
I'm also dying for a diet pepsi, would someone like to come and sneak one in to me, I'll give you my first born!
Kelly left hours ago to attend to some things at the house and I really wish he hadn't left me here alone. Depression+alone= disaster. This sucks!
Give me some caffeine and sugar already or I'm going to turn into one grumpy girl!!
I had a little physical therapy today and could barely get down the hallway because I'm so stiff! I hate this. They have me on a restricted diet (if you can even call hospital food, real food), it's so disgusting. I'm just ready to go home now. Is it Monday yet? I'm so bored and lonely and I miss my fur kids -.-
Blah. Now the tears start.
My doctor came to see me today and he said for some reason my glucose levels are through the roof, even though my readings last month were normal. I really can't help but think there has to be some relationship between the MS, PCOs and these readings they've been getting.
I'm also dying for a diet pepsi, would someone like to come and sneak one in to me, I'll give you my first born!
Kelly left hours ago to attend to some things at the house and I really wish he hadn't left me here alone. Depression+alone= disaster. This sucks!
Give me some caffeine and sugar already or I'm going to turn into one grumpy girl!!
Friday, September 11, 2009
At the hospital
I'm at the hospital for a few days.
I woke up yesterday and felt the cursed MS hug! I felt like there was an 800 pound elephant on my chest and I couldn't breath. My walking had also become more difficult to the point where I needed help. I called my PA and he told me to go straight to the emergency room. I went, had a horrid experience with a horrible doctor and was given the wrong instructions.
I was called by my doctor this morning and he yelled at me, wondering where I had gone because I guess I was supposed to go back to the ER after I had my MRI. I went to the doctor's office and he told me I had two new lesions on my thoracic spine and that's why I was having the trouble breathing and walking. They admitted me into the hospital today and now I'm hooked up into the IV steroid, so hence the 'roid head fog! More updates later on....
I woke up yesterday and felt the cursed MS hug! I felt like there was an 800 pound elephant on my chest and I couldn't breath. My walking had also become more difficult to the point where I needed help. I called my PA and he told me to go straight to the emergency room. I went, had a horrid experience with a horrible doctor and was given the wrong instructions.
I was called by my doctor this morning and he yelled at me, wondering where I had gone because I guess I was supposed to go back to the ER after I had my MRI. I went to the doctor's office and he told me I had two new lesions on my thoracic spine and that's why I was having the trouble breathing and walking. They admitted me into the hospital today and now I'm hooked up into the IV steroid, so hence the 'roid head fog! More updates later on....
Monday, September 7, 2009
Day Seven
So far the prednisone is doing nothing to correct the lack of feeling in my legs. I'm not sure what to do at this point.
To further describe how numb my legs really are: I'm not very good at balance and coordination right now and I managed to fall back and step on a sharp corner of my dog's crate, I didn't even feel it! I didn't even realize I was injured until I felt something wet drip and slide down my other foot! It's missing a whole chunk! I'm sure I could break a toe and never even realize it, scary!
I've gained back the weight I lost due to some unplanned barbecues over the weekend. It's okay, I've started over already.
To further describe how numb my legs really are: I'm not very good at balance and coordination right now and I managed to fall back and step on a sharp corner of my dog's crate, I didn't even feel it! I didn't even realize I was injured until I felt something wet drip and slide down my other foot! It's missing a whole chunk! I'm sure I could break a toe and never even realize it, scary!
I've gained back the weight I lost due to some unplanned barbecues over the weekend. It's okay, I've started over already.
Saturday, September 5, 2009
Day Four
I drop down to five pills of the prednisone instead of six. I'm a little concerned because I'm still experiencing severe numbness in my legs and walking is very difficult for me. I know that I won’t let this disease get the better of me but it’s all a bit frightening.
My husband isn’t helping matters any either. I know it’s difficult for him to see me like this but he seems withdrawn a bit more than usual and he’s picking silly fights with me for no apparent reason. I don’t know how much more I can take. Where was the man that took care of me? I really need his support and comforting right now.
I started taking two 500MG Metformin yesterday and this morning my stomach is dearly paying for it. I know part of it is because I went out to dinner last night with a friend and Kelly and I ate a bit more than I should of. We had a blast though so I don’t mind dealing with the repercussions this morning. Life’s too short to yell at yourself for having a good time.
It’s Saturday and the Farmer’s Market is open. I desperately want to go because I’d love to take some pictures of the brightly colored produce and perhaps pick up some freshly cut flowers to perk the house, and myself, up. Unfortunately Kelly is still in bed and I’d rather not go by myself, considering my current state. Ah, what is a girl to do? I hate that this disease limits me so!
My husband isn’t helping matters any either. I know it’s difficult for him to see me like this but he seems withdrawn a bit more than usual and he’s picking silly fights with me for no apparent reason. I don’t know how much more I can take. Where was the man that took care of me? I really need his support and comforting right now.
I started taking two 500MG Metformin yesterday and this morning my stomach is dearly paying for it. I know part of it is because I went out to dinner last night with a friend and Kelly and I ate a bit more than I should of. We had a blast though so I don’t mind dealing with the repercussions this morning. Life’s too short to yell at yourself for having a good time.
It’s Saturday and the Farmer’s Market is open. I desperately want to go because I’d love to take some pictures of the brightly colored produce and perhaps pick up some freshly cut flowers to perk the house, and myself, up. Unfortunately Kelly is still in bed and I’d rather not go by myself, considering my current state. Ah, what is a girl to do? I hate that this disease limits me so!
Friday, September 4, 2009
Day Three
It's 3:30 p.m. in the afternoon and I have yet to take my prednisone. I slept in until about 2 p.m. which is crazy because I never ever do that! Just goes to show my body really needed it. I went to the store with Kristen to pick up another movie tonight since I'm pretty much confined to the house until my legs get a bit better.
MS update: Legs are still crap.. Webbles wobble but they don't fall down, unless they are me!
PCOs update: Metformin still, don't know if it's working. I pigged out yesterday while having a "poor me" attitude so I probably set myself back a bit. Today's a new day!
MS update: Legs are still crap.. Webbles wobble but they don't fall down, unless they are me!
PCOs update: Metformin still, don't know if it's working. I pigged out yesterday while having a "poor me" attitude so I probably set myself back a bit. Today's a new day!
Thursday, September 3, 2009
Fear
Tomorrow my rebif should be delivered to my house and I can't help but feel a little scared. When I was on copaxone I had the most horrible side effects and I don't know if I'm ready to go though something like that again. I'd love to hear from fellow MSers to learn about your experiences with rebif.
Update, day two on prednisone
Metformin update: I've managed to lose 4.5 pounds since last Friday and I can't help but think it's all thanks to the Metformin. Hope this is a sign of what's to come.
Worked a full day today and I'm exhausted. I took my prednisone around 10 a.m. and managed to hold off on the hot flashes and sweating until about one. I haven't noticed any other side effects yet but I'm sure they will make themselves known to me on my fourth or fifth day.
The numbness hasn't died down yet and I'm wondering how soon it will go away. I really need my legs back thank you very much.
It's hard not to let yourself get discouraged. I just have to remember that I was a normal person before both of these diseases and I'm still that same person, if not just a bit stronger. My heart and thoughts go out to you fellow PCOsers and MSers. It's a tough world, we just need to remember to stay strong!
Worked a full day today and I'm exhausted. I took my prednisone around 10 a.m. and managed to hold off on the hot flashes and sweating until about one. I haven't noticed any other side effects yet but I'm sure they will make themselves known to me on my fourth or fifth day.
The numbness hasn't died down yet and I'm wondering how soon it will go away. I really need my legs back thank you very much.
It's hard not to let yourself get discouraged. I just have to remember that I was a normal person before both of these diseases and I'm still that same person, if not just a bit stronger. My heart and thoughts go out to you fellow PCOsers and MSers. It's a tough world, we just need to remember to stay strong!
Wednesday, September 2, 2009
Enter the sweats
I took the prednisone when I came home today from the doctors office and now I'm sweating up a storm! I swear, I've soaked through the outfit I'm wearing! How do you fellow MSers cope?
Bad news
I went in to the doctor's and I am indeed having a flare-up, fortunately it's not a bad one so I'll be able to take oral prednisone, a high dose for three days and then begin to taper off. I’m worried about the side effects. Last time I was on prednisone it brought back my period and made me get moon face and really bad breakouts, let’s hope this time is different. Thankfully tomorrow is my last day of work before a four day weekend and I’ll be tapered off the high doses before I go back to work. Hurray for small miracles.
My doctor also gave me a prescription for Vitamin D because my blood test revealed my levels were really low.
PCOs update: I have been on Metformin since Friday and I’ve actually begun to lose a pound here and there which is great because I’ve been in the same weight range for the past three years or so. I can’t really complain about any side effects yet because so far they have been pretty easy to deal with but then again I’m only on 500MG once daily and will be starting on two 500MG pills a day starting Friday. I imagine that’s when the side effects will come rolling in.
My current MS symptoms are: Tingling, pins and needles feeling in my left side and right foot. It’s almost split down the middle of my body and my left side feels like dead weight.
My doctor also gave me a prescription for Vitamin D because my blood test revealed my levels were really low.
PCOs update: I have been on Metformin since Friday and I’ve actually begun to lose a pound here and there which is great because I’ve been in the same weight range for the past three years or so. I can’t really complain about any side effects yet because so far they have been pretty easy to deal with but then again I’m only on 500MG once daily and will be starting on two 500MG pills a day starting Friday. I imagine that’s when the side effects will come rolling in.
My current MS symptoms are: Tingling, pins and needles feeling in my left side and right foot. It’s almost split down the middle of my body and my left side feels like dead weight.
To the Shuk!
I called in to work today because it's beginning to get very painful to move. The numbness/tingling is traveling up my right leg now and I'm terrified that if I wait one more day it will also be in my whole right side as well. I have a 1:30 p.m. appointment with my doctor and I'm very scared at what he is going to say. Wish me luck you other MSers!
Tuesday, September 1, 2009
Ah, relapse, how I loathe thee!
I went to my primary physician today because over the weekend I had taken it upon myself to move some particularly heavy furniture, by myself, no less and on Monday morning I awoke to my entire left side asleep! Currently I am extremely cold sensitive and am experience the pins and needles sensation through my upper back down to my toes. After my doctor examined me she said that there was no way it was caused by an injury and stated I needed to get to my neurologist's office as soon as possible.
I have to call their office in the morning.
They aren't going to be happy with me.
I have to call their office in the morning.
They aren't going to be happy with me.
There always has to be a beginning...
Genetic predisposition.
I curse those words.
Somewhere along the line I managed to not only inherit Poly-cystic Ovarian Syndrome but also Multiple Sclerosis! Just goes to show I come from a fantastic gene pool!
All sarcasm aside there was a point in my life when I was carefree and didn't know I had either of these problems. I was 13 and I was waiting anxiously for my rite of passage into womanhood. All of my friends were already blessed with aunt flow and here I was not a tampon in sight! Suddenly, as if my prayers had been answered I got my period for the first time... and only time... at least until I was put on birth control at the age of 17 when a nurse practitioner told me I had baby boobs and spoke the words that would forever change my life, well, at least until I received my confirmed MS diagnosis, I had PCOS. The ultrasound confirmed I had cysts on my ovaries and at the time I probably had convinced myself I would die from this awful sounding disease! So here I was at 17, a pimply senior in high school armed with birth control and sanitary pads, I was finally a woman!
Fast forward a few years.. about five or so give or take a few months. I had just finished up a horrible horrible argument with my husband when I began to notice a tingling almost burning sensation in my left arm. It was a horrible sensation and one that seemed to be spreading day by day. Finally after convincing myself to go to the doctor's (after I had found one in the area) he had decided it was a pinched nerve and shrugged me off. After several different referrals he decided that there was truly something wrong as now my eyesight was beginning to dim and my walking impaired and I could no longer feel most of my body. I was finally referred to a neurologist who at first, after discovering there were no lesions on my brain, said it was not MS and thought it was Devic's disease. After several more tests and several more MRI's he located the lesions on my spine, did a spinal tap and discovered it was not Devic's that it truly was MS, it was just in the beginning stages.
So enter now. After seeing my OBGYN (my beloved nurse practitioner was no longer with the office) I was told there was nothing they could do for me and I was on my own to battle the PCOs. I knew they were wrong! I knew that there were more options available to me! I spoke to my primary physician, a wonderful woman, and she suggested I see an endocrinologist. Her office set up the appointment and after having several pints (I swear!) of blood I have been placed on metformin to see if it will bring back my MIA periods and help me shed some weight along the way.
Update on the MS, since my diagnosis in January of 2006 I have had one flare up in May 2009. Currently I am not on any medication other than baclofen for the spasms and provigil for the tiredness, which I only take as needed. I was taking a copaxone injection daily but the side effects were to severe. Right now I'm in touch with a company called MS Life Lines and I will be starting Rebif as soon as I receive it, hopefully I have better luck with this drug than the last.
I curse those words.
Somewhere along the line I managed to not only inherit Poly-cystic Ovarian Syndrome but also Multiple Sclerosis! Just goes to show I come from a fantastic gene pool!
All sarcasm aside there was a point in my life when I was carefree and didn't know I had either of these problems. I was 13 and I was waiting anxiously for my rite of passage into womanhood. All of my friends were already blessed with aunt flow and here I was not a tampon in sight! Suddenly, as if my prayers had been answered I got my period for the first time... and only time... at least until I was put on birth control at the age of 17 when a nurse practitioner told me I had baby boobs and spoke the words that would forever change my life, well, at least until I received my confirmed MS diagnosis, I had PCOS. The ultrasound confirmed I had cysts on my ovaries and at the time I probably had convinced myself I would die from this awful sounding disease! So here I was at 17, a pimply senior in high school armed with birth control and sanitary pads, I was finally a woman!
Fast forward a few years.. about five or so give or take a few months. I had just finished up a horrible horrible argument with my husband when I began to notice a tingling almost burning sensation in my left arm. It was a horrible sensation and one that seemed to be spreading day by day. Finally after convincing myself to go to the doctor's (after I had found one in the area) he had decided it was a pinched nerve and shrugged me off. After several different referrals he decided that there was truly something wrong as now my eyesight was beginning to dim and my walking impaired and I could no longer feel most of my body. I was finally referred to a neurologist who at first, after discovering there were no lesions on my brain, said it was not MS and thought it was Devic's disease. After several more tests and several more MRI's he located the lesions on my spine, did a spinal tap and discovered it was not Devic's that it truly was MS, it was just in the beginning stages.
So enter now. After seeing my OBGYN (my beloved nurse practitioner was no longer with the office) I was told there was nothing they could do for me and I was on my own to battle the PCOs. I knew they were wrong! I knew that there were more options available to me! I spoke to my primary physician, a wonderful woman, and she suggested I see an endocrinologist. Her office set up the appointment and after having several pints (I swear!) of blood I have been placed on metformin to see if it will bring back my MIA periods and help me shed some weight along the way.
Update on the MS, since my diagnosis in January of 2006 I have had one flare up in May 2009. Currently I am not on any medication other than baclofen for the spasms and provigil for the tiredness, which I only take as needed. I was taking a copaxone injection daily but the side effects were to severe. Right now I'm in touch with a company called MS Life Lines and I will be starting Rebif as soon as I receive it, hopefully I have better luck with this drug than the last.
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