Exacerbation Progress 8-24-2010 to 9-7-2010: Audio Journal Translation

NOTE: the following journal entries consist of text translated from my audio journal. Do not expect proper grammar! I typed it just the way I spoke it.

 You are about to read my translated audio journal which covers between August 24 of 2010 and September 7 of 2010. I am really glad that I kept this audio journal because it allows me to look back and see how much progress I’ve really made, especially when for the longest time I was personally belittling what little progress I’ve made. I now see that I was making great progress the whole time!
August 24, 2010
Today I start my steroid IV treatment and yesterday I had my spinal tap, I currently have severe hiccups and it is annoying as Hell! The spinal tap was not as painful as I thought it was going to be, I actually got a little worked up about it because I decided it would be a great idea to watch some spinal tap procedures on youtube before I had mine and of course the ones that I saw were probably way outdated because the needles were all huge and apparently mine was not that big, I didn’t see obviously but that is what I was told. It seemed like the local anesthetic was actually more painful than the spinal tap itself. It did feel like my neurologists might have touched a nerve or something because for a moment there was a really weird tingly sensation shooting down my right leg. I would compare it to the feeling of electricity. No big deal, like I said the local anesthetics were more painful than anything else.
Luckily they were able to get my steroid treatment scheduled pretty quick considering I start today. I will spend about two hours in the hospital hooked up to an IV pumping steroids in to me. I have actually never been so excited to go to the hospital especially when it involves needles. The sooner I can get this thing over with the better because I’m so sick of these symptoms!
Right now I’m obviously still dealing with the numbness on the right side of my body from my lower foot to my lower back shoulder blade but that symptom is hardly noticeable compared to everything else. What is frustrating about this right now is the loss of fine motor control in the left side of my body because I really can’t do much, I can’t walk anymore, and my left hand is pretty much useless.
On top of that, these hiccups are getting on my last nerve! I have not had hiccups in for ever! I have also lost my sense of taste in most my tongue… There is one tiny portion on the right side of my tongue that can still taste certain things but nothing tastes the same. In the last couple of days my vision has also been deteriorating. It didn’t start off too bad, just a little fuzzy and yesterday it got a little bit worse and today it is much more blurry or maybe even double visioned. It’s getting really hard to read certain things especially if the text is small. For example, if I’m watching TV from the couch I cannot read the TV Guide. If I strain my eyes and focus really hard I can read what it says but it’s not comfortable and it’s not natural. It’s as if my eyes are not focusing properly so I feel somewhat sick when I walk around too much which is why I am so glad that I am starting my steroids so soon because if I had to wait the additional week and a half I thought I would have to wait, I feel like I would probably go blind which would be the worst considering right now all I can literally do is lay around and watch TV all day. So if I couldn’t even do that I have no idea what I would do with myself.
Anyways, I haven’t been doing such a good job at keeping a journal like I should have been since this whole thing started because everything is so difficult right now, I feel like crap, I can’t see the computer and I can only type with one hand so it’s really frustrating! So now, I am going to start recording my journal on a tape recorder so that later on I can convert it all to text, that way, I will not forget when certain things happened. I will probably record a little bit more when I get back from my steroid session But for now that’s it.
Wednesday, August 25, 2010
It is 9:25 in the morning: my first steroid treatment went well, I pretty much just sat there for two hours with an IV in my arm while Cyndi read to me. It’s the next day and I don’t feel any different but I think I read an article that said something about the side effects possibly going away as soon as three days of treatment to around two months. I’m really hoping that I see some immediate effects with this treatment… They told me of course that the steroids might prevent me from sleeping, especially because I am taking them so late in the day. Yesterday my appointment was around 2:30 PM and today I go in at 4:00 p.m. But luckily I slept pretty well last night. I actually felt like I slept better last night then I have Throughout the week so we will see if that changes in the next couple of days. Again, I’m just hoping, in the next few days I’ll start seeing some results. I am mostly hoping for at the least some improvement in my vision, that would be great. I also have had a headache that feels like a result of my vision but it may be from my spinal tap, I am not sure. But I would really like my vision back so that I can read and start typing even if it’s just with one hand. So we will see how it goes, I am just really eager to see progress. I am so sick of laying around the house and doing nothing all day!
Wednesday, August 25, 2010
This is my second recording for today, it’s about 11:00 AM, I just wanted to make a note on the hiccups. Hiccups started around 9:30 AM. Yesterday they lasted about three hours. I had about a half an hour break before they started back up for at least an hour. I did a little research and found that hiccups are among some of the rare symptoms recorded by MS patients. I really hope that this is only temporary because it is really annoying! Each episode lasts about three or four hours and I hiccup about every three seconds so I can’t catch a breath. So we will see how the next couple of days goes… I am definitely going to bring it up to my neurologist because I have tried just about every home remedy that I have heard of. I have tried drinking water upside down, holding my breath, placing peanut butter and sugar at the base my tongue, plugging my ears and tilting my head back while drinking water, and nothing has worked so far. Looks like I am just going to have to wait this one out Unfortunately…
Wednesday, August 25 2010
This is my third recording for today, just thought that I would throw an additional note out there, it’s about 2 PM and I have noticed that my hiccups are gone. If I had to guess, I would say they stopped a little bit after 1:00 PM. I cannot remember off the top of my head what time they started, hopefully they do not start back up but I just wanted to update my journal.
Wednesday, August 25, 2010
This is my fourth recording today, looks like I spoke a little too soon on the hiccups… Right after I stoped my last recording my hiccups started right back up so I got about a 10 minute break between my last recording and this one. As funny as it sounds I would say they are pretty violent. They are not helping my headache so I really hope they go away soon because I’m extremely frustrated right now. I’ll update later.
Thursday, August 26, 2010
It’s about 3:30 AM and it looks like I’m finally feeling the effects of the steroids… They are finally preventing me from sleeping like they said because I am wide awake. So I decided to just get up and throw some Tyson chicken in the oven for a little midnight snack. Another side effect of the steroids is an increase in appetite so I’m feeling that one too obviously. I really wanted to to do a recording to note that I may be feeling some other positive effects of the steroids. It seems as though my balance may be getting better. It’s nothing drastic, but I was able to make it to the bathroom from my bedroom without the use of my walker. I probably should have still used it but I was able to make it without it… Also when I get out of bed, usually I have to kind of sit up in bed for a while to collect my balance before I get out of bed or else I tend to lose my balance immediately. If I don’t let my balance settle before I stand I’ll feel so dizzy that I can barely even stand in one place and this morning I did not seem to have that issue. I was able to pop right out of bed and walk straight to the bathroom. This is after two doses Of steroids so we will see how it continues to progress.
Also, this might be all in my head, but it seems like my vision might be a tad better But it’s really hard to tell. I will be sure to update during the day.
Thursday, August 26, 2010
It is about 4:35 AM, woke up with hiccups about five minutes ago.
Thursday, August 26, 2010
Woke up at the crack of dawn and made a quick recording so this is technically part 2. Not sure what time hiccups went away last night but I am assuming it took at least half an hour for me to fall back asleep. Woke up at 9 AM and at about 9:05 AM my hiccups started back up. Starting to get a headache already…
Thursday, August 26, 2010
It’s about 3:00 PM and my hiccups have stopped.
Friday, August 27, 2010
It is 8:45 AM,had a horrible headache after last infusion yesterday but I think it was a result of my vision and hiccups. Woke up with a headache today and I think it may be from the vision as well, because I haven’t done much else today. In about 15 minutes I’m leaving to my optometrist appointment and I’m really hoping that I can get some glasses today that will help.
Saturday, August 28, 2010
It’s about 11:00 AM, and again I have woken up with a huge headache. I’m not sure if it’s from the glasses or just my eyes. Either way, I am sick of these headaches, they are killer! Anyways, yesterday was my fourth infusion of steroids, and I can’t necessarily say that I’m getting much better but I am noticing some changes. For example, the skin on the right side of my body is once again becoming really sensitive to cold. My balance may be getting slightly better as well. Other than that my body still feels pretty useless.
Saturday, August 28, 2010
Balanced is definitely improving, I have been getting around the house without the use of a walker. Vision is still horrible so it feels as though the balance doesn’t make much of a difference because the loss of vision is canceling out whatever progress I’ve made in balance… So if I could see better, I would say that I was definitely doing much better at the moment. I have been in bed almost all day because as soon as I open my eyes and move around my headaches come about.
Sunday, August 29, 2010
It is 9:30 AM, and once again I’ve woken up with a headache. I am still convinced that it is related to my vision though I have no way of knowing for sure. I have also noticed, that my gate may be improving slightly but again I feel as though my vision is canceling the positive effects of my improvements in walking… At this point I feel like I have to walk with my eyes closed because my head just hurts so bad! Today marks Day three of no hiccups, hopefully it stays this way!
Sunday, August 29, 2010
Just wanted to add another note: my skin sensitivity has once again greatly increased to the cold. Just as an overall note, my skin went from sensitive to numb and now it seems like it’s going backwards considering I’m back to sensitive. Also sensitive to light touching: for example, a small string being dragged across my skin would normally tickle but instead I experience sensations of pain. I suppose moving backwards is better than nothing.
Sunday September 5, 2010
It’s been a while since my last update’ so I’m going to try to catch up. In the last week or so my walking has been getting much better. My progress is slight, but there definitely has been some progress nonetheless. I would compare it to the hair on my head: every day I know it’s growing but how much I couldn’t tell you… Either way it seems as though I can pretty much get around the house without the use of a walker, I may have to brace myself against the wall but it’s better than nothing. Vision does not seem to be getting any worse, but it is not getting any better. Glasses seam to help a little bit, but the difference is faint. Speech seems to be a little slurred in the last couple of days although everyone says they can’t tell but I on the other hand can definitely tell that words are not rolling off my tongue the way they normally do. The reason people probably don’t notice is because I am making a conscious effort to choose words that feel easier to say. So again, overall I would say I am making progress, not the best, but progress is progress. So I’ll take it.
At this point I’m still trying to decide which medication to try out. So far, I have reviewed the information for Avonex and Copaxone and I kind of like Copaxone with the exception that it’s a daily injection. I would still like to review the information for Rebif because you only inject three times a week. I like the three times a week thing much better but it still looks like Cpopaxone might win this one, just seems like a better medication all around…
Monday, September 6, 2010
Signs of improvement are definitely increasing, mainly my walking. At first I would have said that my hand was not any better, but this morning I managed to clip my keys to the back of my pants with one hand which is something I couldn’t do before. It wasn’t smooth but I still did it. As far as my eyes are concerned, they seem to be adjusting to my glasses finally but vision still sucks. I am at least adapting to my lack of vision so it hasn’t been as frustrating.
September 6, 2010
Quick side note, this is more personal but in my books is definitely worth a note. Yesterday I listened to music for the first time since all this mess started up. Because my eyes are adapting to my poor vision I was able to find my way around my computer well enough to get some music playing. The first song I played is called “The Story” by Brandie Carlile. I think she has a great voice and because I appreciate music so much I thought it would be nice to listen to some great vocals instead of my typical rock music.
Tuesday, September 7, 2010
It seems as though I’ve not been on top of my journals, but now that I have this voice recognition software it will be much easier to stay on top of things. After reviewing my journal recordings I realize now that my progress has been great so I’m really glad that I recorded those journals for me to look back on. I have not been mentioning how well my walking really is.
Yesterday I went to target with my mom and I did not use the wheelchair. Instead, I just used a shopping cart to help keep my balance. My legs ended up feeling kind of weak so for Best Buy I had to use my wheelchair but for the most part I don’t really need it right now. Today we went to breakfast and we did not even bring the wheelchair!
I’m really hoping that over the next week or two I will be very close to my remission. Also, I decided to go with Copaxone because overall it seems like the best medication for me despite the daily injections…
Another thing that I forgot to mention is in the last three or four days I have been dealing with severe restless leg syndrome. The worst I have ever had, for example, I have been going to bed around 8:00 PM and I won’t fall asleep until around 3 or 4 AM. I finally sent an e-mail to my doctor requesting some kind of medicine to help because no home remedy seems to be working and I am exhausted due to my lack of sleep.

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