Main » November 2004
November 19, 2004
No rest for the wicked
I'm so tired of being tired. 11/2 I had a Dr.'s appointment. I went in with the same old same old symptoms. I also gave him a list of 9 blood tests that I wanted to run. (These should be done every 3 months and haven't been.) Within 2 days I get a call telling me I'm severely anemic and the Dr. wants me on iron and folic acid (B9). I was not surprised with all the flooding (bleeding) I have done for the last 3 months. At any rate about a month ago my GYN put me on birth control pills to correct the bleeding. (They still don't know if the estrogen caused the bleeding or not. I have been off it for 2 months and the flooding was as bad as ever.) It looks as if there might be a god after all. I think the bleeding has stopped. (Yea, no more messy accidents to clean up.) But I am putting on weight that I don't need due to the BC pills. I am still so very very tired. The lack of motivation and drive and concentration seem to follow me no matter how much sleep I get, which is alot. My blood pressure is still high and causes even more mental confusion than I already have. I have tried the Providgil for the sleepiness and it put me in a fowl mood so it looks like we are at the end of options. It looks like this is as good as it gets. Living with Addison's and all the side effects is a very hard act to follow. I had to discontinue the Vioxx due to the recall. I am taking Celebrex in it's place and find that it gives me gas and doesn't work as well , but oh well.
I have a dentist appointment today and hope that they don't cancel it due to my blood pressure being too high like they did last time. It takes me 3-4 months to get in so a cancelled on due to HB sucks. I have a tooth that broke off and I want it fixed before it starts to hurt. I don't want to have to start doubling up on Hydrocortisone if I don't have to.
It seems that alot of Addisonians have this same brain fog lack of concentration no motivation thing going on. I just wish I could get a handle on it. I'm tired of feeling like an idiot. Sometimes it will take me many many many tries to get this post done so you can understand me. It sucks. Oh well , I'm off to the shower so I can go to the dentist.......
Posted by Angie Noah at 09:44 AM
November 11, 2004
Oh god I bearly servived
Oh god, I barely survived another day in the life of an Addisonian. This weekend was the last game for Ron's nephew. His game would be held at home (Arcata California) 5 hours from us and 10-12 for the majority of the other family members attending the game (20 total).
Let's start with Wed. the 4th. I needed to take down my Halloween decorations down from the outside of my apartment today. I painted a huge spider web on my front door so I was going to have to hose it down with the hose and some soap. It was pretty cold out and then add the cold water and you have on fatigued Addisonian. I was outside for 20 minutes before I had to go in and lie down. I was instantly zapped. This was at 5 pm. I didn't wake up until the phone rang at 8 pm. I should have taken an extra dose of hydrocortisone to compensate but I couldn't even think to do this. I was OUT.
I then dragged myself to the van, and drove to Eugene !/2 hour away from my house. Once I get there I load up the van so we can just wake up and go in the morning. I then made shirts with the #14 on them for support when at the game. Ron's dad is comming with us as well as his daughter. Ron's dad stresses me so this 5 hour drive should prove interesting. Mind you that I am still bleeding and clotting heavily and it looks as if there is no end in sight. This will be month 3. I have been on the birth control pills for 1 month now and they don't seem to have an effect on the bleeding. I had some blood work done on the 2nd and it came back stating that I was severely anemic. Folic acid and iron pills were prescribed. Now I really do have more pills than Carter.
At any rate I have a few hours to rest before Ron's sister and mom get in. They get in around 2 am and we don't get to sleep untill 5 or 6 just to be up by 8 to shower and cook breakfast. We had to be in Arcada by 11:30. Game time 1 pm. The game was 4 hours and very disappointing. I was so fatigued but held on. We (20 family members) then went out for dinner putting us home around 9 pm. I was so tired, wouldn't you know it the first time I take the iron and it upsets my stomach so I can't sleep. I have never had indigestion soooooooooo bad before. I finally get to sleep around 2 am.
I have to be up at 8 (I normally get up around 12 pm) to cook breakfast so we can go to the beach and do some beachcombing before we head back to Oregon. I love beachcombing so this was supposed to be fun for me. We found this one beach that was down a very large bank. There was a long and step staircase that led you down to the beach. I made it down 1/2 way before I started having balance problems and my blood pressure was shooting sky high. I was sweating so much my poor head was dripping with sweat. It was running off my nose and getting in my eyes. I managed to make it to the bottom and walked the shore line looking for beach money (sand dollars). I was starting to have problems breathing and my coordination was real shaky. This beach didn't have much in the way of shells so we decided to head back up to the van. I managed to get about 1/3 of the way up the staircase before I had to stop because I was so weak I couldn't lift my legs. I was having trouble breathing and the fatigue was overwhelming. I started to cry because of the frustration that goes with not being able to do such a little thing like walking up a flight of stairs. Physical exertion should not be a problem but it is. I finally made it to the top with the help of my boyfriend. The fatigue had hit me hard by then. I was crying uncontrollably and could barely stand up. The first thing I did was head to my purse and take some hydrocortisone. I was mentally on my way out. I wasn't sure whether I was going to pass out first or go brain dead first.
At any rate we went back to the room, loaded up the van and headed home. I was out the entire trip. Then wouldn't you know it 1 hour from home I am hit with flooding that has soaked my pants and the seat. The closest rest area is 40 miles away and I can't stop the bleeding. God, I was really stressing now. What in the helll is causing the bleeding? No wonder I am so tired all the time. My body is busy replacing all the blood I have lost over the past 3 months.
We finally find a rest area and get home in one piece around 9 pm. I shower and go to bed. I was out for 3 days. I have another big weekend coming up and don't know if I'm even going to participate in it. I 'm no fun to be around when I get like this. I hate not being able to enjoy myself. I feel like I drag everybody else down. They kind of understand but not really. Well, I'm off to bed now that I have gotten rid of the heartburn. Take care and be happy. LOL
Posted by Angie Noah at 08:28 AM
November 01, 2004
The day in the life of an addisonian
It's been a while since I've written. My computer has been down. I am at a friend's house and thought I'd better update my diary.
Since the last time I wrote a lot has happened. I have a lot going on. May, June, and July I did not have a period. Aug. 4th I started my period and it has lasted for 3 months. I have been flooding to the point I can't leave the house. In July I saw my GP and requested some androgen gel to increase my poor sex drive. He was uncomfortable with this so he prescribed menest (estrogen). At the same time he prescribed an antidepressant to address my constant sleepiness and my lack of focus and the brain fog as well as the poor motivation and lack of drive. (This is the 3rd antidepressant he has put me on. I don't feel that I am depressed and that's why they are not working. I guess alot of Addisonians have this kind of problem.) 6 weeks go by and the bleeding is bad, the antidepressant is doing nothing. What was causing the bleeding? I looked up when I started the menest and found it was 1 week prior to me starting my period in Aug. The side effects cautioned breakthorough bleeding.
So I stopped taking this as well as the antidepressant. For one it was not doing any good and for another I was going to see a new Endocrinologist Aug. 19th and would be addressing the same issues with him and wanted to give any drugs he RXed a chance. It was also at this time I made an appointment with my GYN to discuss my periods and get a pap smear. Her office made an appointment to have an ultrasound done as well as check my hormone levels. She agreed with me about the Menest causing the bleeding. She told me it was good that I stopped taking it and it may take several months to straighten my periods out. At the same time the new endo addressed the brain fog and lack of motivation and focus an well as the sleepiness by playing with my steroids. I take 40 mg of hydrocortisone for my Addison's a day. He put me on 7 1/2 mg prednisone once a day. This is equivalant to 30 mg hydrocortisone. After 3 weeks I phoned his office and told them that I was not handling my stress very well and my face was breaking out. For 8 years my face was one big raw sore that hurt and never healed up. It wasn't untill I was put on 40 mg hydro that it cleared up and had been for the past 3 years. The change in steroid dosage was to blame.) And I thought that my steroids needed to be increased.
The nurse took the message and said she would get back to me. 2 weeks go by and I have not heard a thing, so I call again and tell them the same thing again and am told the same thing. A week goes by and my face is really bad and I can't deal with any stress I'm a mess. So I call the office and insist that he either increases my prednisone or I wanted to go back to 40 mg hydrocortisone. I was told the doctor was out for the weekend. It has been 3 weeks since my initial steroid change and I was not given a follow-up appointment. None of my calls had been returned. As it turns out instead of putting me on an equivalent dosage of prednisone he put me on 10 mg less than what I was use to. The nurse told me that she had given the doctor my messages and that he would get back to me . I was so upset I told them to put a note in my chart that I was going to go back to 40 mg hydrocortisone (I could not and would not ever have my face in this condition again. It seems that cortisols role is not only to deal with stress it is also responsible for healing. Since I had no cortisol for 8 years my immune system was not allowing my face to heal. Once The 40 mg hydrocortisone was started it allowed my face to heal up and it has not broken out in over 3 years or not untill they played with my steroids. ) So I was pretty put out with my endo's office. I called my Gp and had them give me a RX for hydrocortisone.
2 weeks go by and my endo's office calls and tells me that the doctor wants me to cut my prednisone down to 5 mg. ????????? What about the note in my chart stating I was going back to the Hydrocortisone? Nice documentation on their part. I explained why we made the change in steroids to begin with and was told that I should try Providgil. I told her that my GP had mentioned it before but we hadn't gone that route because it is an amphedamine and I didn't want to do that. She told me she would get back to me. A week and a half go by and she calls and wants to know if I want to try the Providgil or not. I told her yes, so she wants to know what pharmacy to call it in to. So I tell her. I go to pick it up and it's not there. A prior authorization has to be done if OHP (Oregon Health Plan) will cover it. They may not. And I guess it is quite expensive.
Then to add to the mix I am dependant on VIOXX to keep my RA in check and now it has been pulled off the market. OHP didn't cover it ($100 mo), but I was given about a years worth last Christmas (leaving me 3 months worth left) by a drug rep. Celebrex is the next best thing but OHP will not cover it so I am screwed. I can't afford the Celebrex so I'm going to finish taking my VIOXX and then I guess I will just have to cross the pain bridge when I get to it. I don't ever want ot have to deal with the pain and depression that went with having RA.
So that's where I am at this moment. My face is better, I'm handling my stess better and my periods have been OK this past week. (That's due to the birth control pills my GYN put me on 2 weeks ago). So that's whats been going on with me.
Posted by Angie Noah at 11:42 PM | Comments (1)
