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
Yesterday (Saturday) I slept most of the day again. I can not remember exact times. From what I emailed Dave, I slept till noon, got up, ate lunch, went out and picked raspberries, came back, took a shower and went to sleep at four until 6pm. I go up, got ready and we went out until 1am.
Today, I slept until noon. (I did get up at 8am when Ally was biting my feet for breakfast), got up, ate lunch, slept until 3pm, got up tried to accomplish something today so I thought I might put new carpet on the kitty condo. Well, I managed to get two pieces of the old off then I had to sleep again from about 6 till 8:30. I got up, made spaghetti for dinner, ate, did the trash and am now back in bed (its midnight).
So that is about 15.5 hours of sleep today. This is not a good sign. I felt good for about a week now it is like before and I am worried. I could add depressed and scared too. I do not know what will happen if I do not get better. Oh well, off to bed, Tiggy just arrived to join me.
Monday, June 21 - Well, today I slept till 7:30, was awake for 1.5 hours then slept till 11:30. I managed to stay awake until 4 then I slept until 6:30 when the neurosurgeons office called me back. The nurse, Irene, said my sleepiness could be from stopping the steroids and they want me to say on he anti-seizure drugs until I see the Neurosurgeon again which will be about a week after my next MRI which is supposed to be about two months after my craniotomy surgery. She also is setting me up with an appointment to do a cognitive function test. Which will tell us if I have lost anything. I also heard from the other surgeon. My other surgery is now scheduled for Wednesday at 10:00am. Today I also noticed that my tremors are back and I am sweating a lot (inside in the air conditioning). It is 7PM and I need to go to Wal Mart for kitty food and milk. I will try to update this again tonight.
Tuesday, June 22 - Sorry I did not get to update this on Tuesday. Between problems with my cable modem (I bought a new one), the cable company having trouble and trying to get ready for surgery I just did not manage to get it updated. Ally woke me up at 6:30 for breakfast. I got, got dressed, and went to the bank (at 8) and to staples for a new modem. I came home and installed the new modem. Slept from 9:30 till 11. Got up, and went to Tony's to meet Debi and Brandy for lunch. I came home and Vacuumed the house then rested for a half hour. I got up when Gary and Janet arrived. I typed his resume for him and they left about a half hour later. I slept for about two hours, got up and then finished doing things to get ready for Wednesday. (did the dishes, laundry, made the bed, etc) Dave and I went to bed about 11pm.
Wednesday, June 23 - Not much to say here. We got up at 6am, got ready, drove to GBMC, I had my surgery, they took me back about 9am, and the surgery started about 11am. I woke up in recovery about 12:30 and they took me to the cafeteria about 1:30. I got a hot dog (GBMC has 1/4lb all beef hot dogs that are great. Kind of like the ones Ron's deli used to have. We came home (about 3:30pm after a stop at Walmart for my pain medication), Dave put me to bed and I just woke up (7:30pm). The pain is not too bad. Mostly it feels like I have a few hairs caught in my underwear. But, at times it hurts a lot. I will be on percocets for 7 days. I feel dizzy, tired and a bit well, high from the anesthesia and pain medicine. I am going to try to get a bite of dinner and feed the cats. Right now it is kind of burny down there.
Thursday - June 24th - Not much to say again. Most of the day was spent sleeping. I can not remember if I took a percocet this morning or not. I did take one a few minutes ago. I got up at 7, went and had my mammogram. (Not as bad as the horror stories lead one to beleive). came home, ate some lefover potato soup, went to bed, other than waking a few times for bodily functions I have slept all day. I got up at 8pm or so and ate the rest of the potato soup. now I am back in bed. Other things I have noticed but have not written here is muscle pain. I think it was Tuesday I noticed my shins and upper arms hurt very bad. It was definatly muscular and not joint pain. today my right jaw muscles hurt. (That may be due to sleeping on it for so long since I still have to sleep on my right side since the left side still hurts from the crainiotomy.) I am also alternatly hot then cold like I have a fever but I am not running a temperature. I am just so tired of being sick and sleeping all the time. This is no life at least not one I want. I am not sure how much longer I can deal with this. 19 more days till I am supposed to go back to work and I am no better. I am definatly depressed. Don't worry yet, I am not planning anything at least not yet. I am going to at least wait till my second surgery heals enough so that I can use that part. Maybe that will make me feel better. Oh well, enough for tonight. **** update - I just looked up percocet on the internet. It is contraindicated for people with brain injuries because it can raise ceribro-spinal fluid pressure. So I am definatly going to stop taking it. Maybe that will make me feel better. I can not believe that the doctor would have prescribed that for me exspecially after they were so concerned about my crainiotomy. oh well.
Friday - June 25th - Interesting note. Since I started this site I know what day it is *L*. I am not sure what to write today. My mind is not working well. Both cats are sleeping with me right now and Ally has slept with me since this afternoon and she never sleeps with me. It alwas scares me when they do something different like this. Do they know something I don't? Am I going to die? Probably not but they freak me out when they do weird things. I heard from Hopkin's today. The cognative function test costs $1700 minimum and they do not take insurance. So I am going to call my neurologist Monday. I also think I am going to call the shrink I saw before. I do not know if he will see me since this is not his area of expertise but if not maybe he can refer me to someone. Let'e see, I did not sleep well last night. I guess because I slept so much yesterday. My body now hurts all over where I come in contact with the bed. There is not much I can do about it since I can only sleep on my right side due to the crainiotmy. I finally fell asleep good at 5:30 am and slept till 10:30 or so. I got up for a while and just refused to go back to bed. I am sick of laying in bed all the time. Dave stopped on his way back from his mom's and dad's house about 12:30 and we watched "interview with a vampire" (ok I admit I think Brad Pitt looks awesome in that film. Probably why I like it so much *L*). He fell asleep on the couch so we moved to the bedroom. He slept while I watched the movie. We went out for dinner at Tony's about 4pm and I just barely made it home. I had to sleep after that. I slept fitfully for about two hours then slept well till 11:30. I acomplished nothing today. I usually like to do at least one thing but lately I can not even manage that. (There is some stupid bird outside my bedroom door singing at the top of his lungs at 1:18am. grr). I honestly do not know what to do next. Doctor's do not seem to know what to do. I know I don't. What do I do next? I am almost convinced I have CFS (Chronic Fatigue Syndrome). I do not know how I can deal with that. I know you all know this but to go from a type A personality to nearly bedridden in less than a year is very difficult to deal with. Oh well, enough rambling for tonight.
Saturday - June 26th - Well, hmm I can not remember what time I fell asleep last night. I woke up about 10:30. Fed the cats breakfast, read the paper, made creamed chipped beef, ate that for lunch, went back to bed about 1pm. I set the alarm clock for 3:30. I got up just before the alarm rang, took a shower and made macaroni and cheese, got dressed just in time for Dave to arrive. We went to the radio clubs field day event at the leitersburg ruritan. I enjoyed it and suprisingly, so did Dave. We made it home at 8:30pm. I knew I would pay for that and I had to sleep after that. I woke up at 1:30am, made tea, took my medication and did the dishes now I am back in bed. I am trying an experiment. I took one of my extra steroid pills I want to see if I am dramatically different tomorrow. If so then I need to discuss that with my doctor or neurologist. I know I do not want to be on steiroids the rest of my life but, it may help them find out what is wrong with me. oh well, tiggy is here, time for bed
Sunday - June 27th - Quicky, I neglected to do this yesterday so I am doing it Monday. I went to sleep last night about 3am. (obviously the experiment worked.) I got up about 9:30, and fell back asleep until 1pm. I got up, got ready and went to Dave's to go out for dinner. After dinner, I felt really tired and came home. I could not sleep I did not fall asleep till 3am again. So, steroids obviously help a lot.
Monday - June 28th - I woke up this morning feeling ok, not back to myself but better. I got up about 10am. but by 1pm I think the steroids wore off and I crashed. I slept from 1pm till 5pm. I got up and took another steroid. I am just so sick of laying in bed I have to do something. I made appointments for the follow up for the second surgery and an endocrinologist appointment for the 16th (two days after I am supposed to be back at work). I tried to make an appointment to see my pcp but the first availale was the 26st. The girl told me to call back in the morning at 8am to get one of the emergency appointments. Hopefully he can help with getting my std extended. I managed to stay up from 5pm till now (almost 1am) but I need to go to bed to get up to call the pcp.
Tuesday - June 29th - Today I set the alarm for 7:30am and got up to call my PCP. I made an appointment for 4:15 and went back to sleep till 1pm. I got up, ate lunch, took a shower and went to my appointment. He wants me to have a spinal tap to check for MS. I have to call in the morning to make that appointment. He also said he would send whatever was needed to my STD insurance and the company. Which is good news. He did the normal roadside sobriety checks. I thought I passed but apparently not. The worst part now is that if I have MS, it almost hase to be progressive. The prognosis for those cases is not good. But I am not going there yet. Worst case it is the malignant form of MS. But I do not think so because That one can cause death in a few months. The other, 5 years or so seems common. I just don't know anymore. I am tired physically and mentally. I am tired of laying in bed all the time. I do not think people realize what it is like. To not have the energy to do anything. I got up today, took a shower, ate lunch, went to the doctor, met Dave for dinner, came home and Dave and I talked for a while. I paid for that with a 5 hour nap (8:30 to 1:30). I got up, made tea and now am in bed. The more I exert (physically or mentally) the less time I have before I crash and the crashes are not something I can stop or control. I have woken up in some pretty strange positions having just fell alseep when I pushed myself too far but most of the time I manage to make it to the couch or bed. I also just realized, rereading the above, that it takes me a long time to do things. I got up at 1:30 and it took me till 3:30 to eat, take a shower and get dressed? granted there was quite a few phone calls in there but still that is a long time. All I know is this is not the life I had planned. It is not much of a life at all. I want to do things so badly. Something, anything really. There is so much I want to do but I just can't. Oh well, bedtime tonight since it is 4am now. (took me 2.5 hours to make tea, read my mail (oh I got the bill for my crainiotomy from Hopkin's (roughly $14000, so far, my part is $54 and change), potty, check my email and write this.) oh well.
Wednesday - June 30th - Today was a good day. I probably should not put this on a public site but I took one of the 4mg dextrometasones (SP?) that I had left over from before surgery. I have been awake for 12 hours! I admit that I have not been able to do much, dishes, trash and a load of laundry but I am awake and did not have to spend all day in bed. Of course, the bad part is I do not have enough of those left to last till I see the neurologist. But I do have enough left till I see the endocrinologist. I am not going to take one tonight to see what happens tomorrow since this is supposedly stays in your system for 2 - 2.5 days. That reminds me I have not taken any of my bedtime meds yet. Not sure what else to say. I am going to my PCP's office tomorrow to request the paperwork to extend my STD. I do not see my neurologist until August 9th. The endocrinologist on the 16th of July. If I extend my STD the full six weeks that would be the 24th of August. If by some miracle they manage to fix me before then I can always get a return to work slip and go back early. Oh well, Meds then bedtime. I just hope and pray tomorrow is as good as today was.