Tori's web blog - condition update
Ok, I am starting this for two purposes.
#1 to allow everyone to be able to get an update on my condition on a web site and
#2 to keep a log of my condition and feelings
Note: There is a link to previous months Blogs below
Thursday - July 1 - Well today was not very good. I got up at 11am, got ready, went to the doctors office and asked them to fax the documentation to the STD company and to get me a note for work (I did not ask them to fax that since I had to fax my original documents three times before they managed to get them so I will fax that one) I went to Wal-Mart to pick up kitty food and milk and such. I made it back home about 3:30 and fell asleep about 4 or 4:30. I woke up about 7 or 8 and I am going back to bed. I am going to try another steroid in the morning. Since I think they keep me up when I take it at night.Oh well, bedtime.
Friday - July 2 - Today was ok, not good, not bad. I got up about 11am, got ready, went and picked up my papers from the doctors office for my STD extension. I took a nap from 6:30 till 9 or 10, did the dishes, cleaned up the kitchen a bit and made tea. Bed time now.
Saturday - July 3 - Today, again, was ok, I got up at 6am. Went outside about 8 and put a few nails in the plastic roof over the porch that kept popping up when the wind blew and a few nails in the siding that was pulling away from the house (The HOA mentioned those problems). After I took a shower and crashed. I slept till 2pm then got up. Dave came over about 5 and we had dinner, worked on my puzzle (yes I am so board out of my mind that I started a puzzle.) then we napped together until 9:30. It is 1:30am now and I am off to bed. I am getting very depressed. This is so hard to deal with. I just want to be back to my old self again. I am beginning to wonder if that will ever happen. I feel helpless I have seen so many doctors but none seem to be able to find a cause. I am just not sure how much longer I can cope. What if this is permenant? There are days I lay here and cry. I do not think I could cope if it is permenant. I do not want to have to go on long term disability. That to me would be admitting defeat. I feel like it would be the end of my life. But right now, there is no light at the end of the tunnel.
Sunday - July 4 - Ok, well, hmm not sure what happened but nothing saved last night. So i am oing to have to find another way to do this. Well, happy fourth of July everyone. Lets see I do not remember the details of today (Monday) so this should be fun. Lets see I got up early sunday and looked for the paper (not there) and fed the cats. I piddled around for a bit and had breakfast (don't ask I can't remember I think it was a hot dog). I went back to sleep till about 11, read the paper. ummm. my ex boss stopped by about 2 then I watched a movie, the lord of the rings, return of the king that strongly effected me emotionally which I was not expecting. I guess there were too many goodbyes at the end. I do not know why but I cried a lot and it made my "bad" feelings very strong. Anyway, I had to crash after that. I woke up in time to watch the fireworks from DC on TV. Then I went out and saw a few of teh Hagerstown fireworks, came back in and Watch some of the NY fireworks. Oh, I had promised the kids I would scrub their litterbox, So, I did the trash and scrubbed the litterbox out on the porch, then I took the hose and watered my plants. Well, there has been a cat hanging around here and living under my porch hissing at me. Well, when I was watering the plants, I heard a cry. I came in, got the flashlight and found three little kittens (I am guessing less than a week old) under my porch. They are about 3 inched long, eyes closed, cute as hell. I do not know what I am going to do about them yet.
Monday - July 5 - well, I got up sometime this morning. I think about 9, took a shower, I do not remember what else this morning. I may have slept, I may have just watched tv, I can't remember. Anyway, I had lunch about noon. Dave came over a little while later. I made him lunch. He took a nap while I watched TV. We laid around and napped all afternoon. Then I made dinner and we took another nap in bed for a while. He left a while later. I slept on and off all evening now I am in bed. One other note. I must have made Mamma cat mad. She moved the kittens. Not far though. When I went out and popped open the cat food can she came and ate soon after. So they are close.
Tuesday - July 6 - Today was a bad day. I slept till 3pm for all intents and purposes. I did get up and feed the cats but otherwise I was asleep until 3. I forced myself to get out of bed (Though I could have easily just went back to sleep), ate, got ready, and went to the radio club meeting, came home, took a shower and now am back in bed.
Wednesday - July 7 - Today I had to get up early and go to GBMC to see the surgeon. Everything is ok, I just have to work on it for a few weeks then if I do not make any progress, then we decide if I am going to do another surgery to fix it. I met Linda for lunch. Came home (I just barely made it about 1:30) and crashed hard. I woke up about 7. I did my thing. I managed to do a little I think so I think I will be ok in a few weeks and maybe I won't have to go back for surgery for that. It did hurt but I expected that. oh well does not sound like much but it killed me. Bedtime now.
Thursday - July 8 - Today was another bad day. I am getting worse I think. Today everything hurts. headaches mostly behind my eyes, my body hurts all over. I slept until 1:30. Dave took me out for dinner. now I am in bed again. I am beginning to wonder if I am going to survive this whatever it is. I seem to be going downhill and I do not know what to do. I hope tomorrow is a better day. Maybe I am just paying for Wednesday. Hopefully that is the case. Not sure what else to write.
Friday - July 9 - A little better today. I slept till 11 or so then managed to straighten up the house, do a load of laundry and the dishes. I took a nap from 1:30 till 4 then Dave and I met Terri and Gina for dinner. We made it home about 8 and we took and after dinner nap for an hour or so. Dave went home. I fed the cats and am going back to bed. My body aches are better today but my kidneys hurt bad. Which may confirm my assumpion about adrenal problems or not who knows anymore? Dave and I are off to DC tomorrow night and Mom is taking me to Ocean City on the 19th and 20th. I am scared to go. I am worried about the heat and just what the trip will do to me. How long will it take me to recover from that? I am tired. so tired. There are times I think it would be best if I just didn't wake up. Oh well, enough for tonight.
Saturday - July 10 - (entry added Tuesday) I do not remember much. I slept most of the day until I had to get up and get ready to go to DC with Dave. We left about 4:30 and had a good time. I actually was feeling pretty good and I drove home. We made it here about 1:30. Dave went home and I went to bed.
Sunday - July 11 - (entry added Tuesday) I managed to get up early (about 8). It is early for me. I got dressed and went and got breakfast at AC&T (chipped beef on biscuits) and went to church. I stopped by the market to pick up milk and bread and made it home about 1:30. I crashed then until now (5pm). I am thinking about what to make for dinner. I fell asleep on the couch while thinking about what to have for dinner and woke back up about 10. Ate dinner, fed the cats and went to bed.
Monday - July 12 - Lunchtime update - I wanted to put down a few things before I forget. Pain - all over, Behind my eyes, my ears feel like there is a pimple in both of them. Kidney pain as always, arms and legs hurt like I did too much work. More later. (added tuesday) hmm, I remember going and getting my prescriptions refilled then back home, I ate lunch and crashed but I do not remember times.
Tuesday - July 13 - horrid day - slept till 4 then forced myself to get up and eat dinner. I then fell asleep from 6:30 till 9:30. I got up, fed the cats and took a shower. I also managed to do the dishes. I also realized today that I have been editing these some. I have not put in some things like that I cry myself to sleep most nights. I know I am depressed about this whole thing. I am out of ideas of what could be wrong and who to see.
Wednesday - July 14th - (entered Thursday) I forget - sorry I just remember it was not a good day. Dave came and took me to dinner at 5 other than that I basically slept.
Thursday - July 15th - I did not sleep well last night. The pain in my back was awful. I finally fell asleep about 4am and slept till 11. I got up, went and paid my car insurance and switched to monthly payments for a while. I also went and got my oil changed (long over due). I came home and fell asleep waiting for Dave to come. He called about 2:15 and showed up about 2:45. We went to lunch at burger king and came back here and spent some time together. He left about 6 and I went to sleep until 10. I am now exhausted and an going to bed.
Friday - July 16th - I got up about 11, got ready and drove to see the endocrinologist. He told me I was not crazt and that it is possible that my adrenal or pituitary glands are failing. So he gave me a prescription for hormonal tests but he wants me to wait till next month to be sure the steroids from my crainiotomy are completely out of my system. I came home and crashed.
Saturday - July 17th - I have paid dearly for the trip yesterday. I have slept most of the day and I feel dizzy and weird. I am not sure how to explain it. I had decided last night that I was going to have to go back to work but days like today make me worry that I won't be able to go back. Oh well, I have to try. I may not be able to update this for a few days since mom is taking me to the beach for a few days.
Sunday - July 18th - (early morning update) - I lay here and my head is thumping (stabbing pain in the right temporal region). My back hurts and as usual I am exhausted. I have not slept much last night. It just hurt too bad and no amount of Tylenol has touched it (I just took three more. Oh did any of you know that Tylenol, etc causes kidney failure if you take it regularly?). Besides, It does not matter if I sleep or not I am always exhausted. More and more I believe I am going to die. I am not afraid of that. I think I would actually welcome it now. I do know that I do not think I can take this much more. If one of these doctors does not give me something to help soon, well, I will have to take matters into my own hands. (more later (maybe))
Finally, an update: August 9th, 2004 I went back to work on July 29th, 2004. (I had no choice basically.My PCP did not want me to go back but, if I did not, my short term disability insurance would have run out and so would my insurance) I did ok Thursday and Friday and most of the next week. (I came home and crashed most nights and my legs felt like I had climbed a mountain even though I sit at a computer all day but I did ok) I "hit the wall" Thursday, August5th at about 3:00PM. My brain fog returned and was exhausted. I had hoped that sleeping both days this weekend would revive me but sadly, it did not.So, here I am at work on Monday, Brain fog and all, feeling like I could sleep for days not being very productive. I saw my neurologist today. She said "No" to MS (no lesions on the MRI) and said I passed my neruo exams (aka road side sobriety tests) so sheis sending me for a sleep analysis. She thinks I am missing REM sleep. I do not agree with either. I told her I know that MRI'S are only 80-90%effective and it is not unusual for there to be no detectable lesions inprogressive MS. She at least agreed with that and when I told her about hitting the wall Thursday and my legs and such, that is when she did the neuro tests. I think I failed the neurological tests and I think I dream(Ok I can not say for sure but I think I do) which only happens during REM sleep. I have another MRI tomorrow and go to see my neurosurgeon at Hopkin's on Thursday. I am going to beg my neurosurgeon to send me to someone at Hopkin's. Surly there is someone at Hopkin's who can figure this out.