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My Life with Cushings Syndrome

Entries in this blog

June 1st 2010 almost 4 months since my surgery

Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable.   Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests.   I'm so tired of all this, and my weight loss has stopped. How discouraging.   Going to post on the forum see if I can get any
Marisa

Marisa

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April 29 2010 - 11 weeks post op

Well once again its been a while since I posted.   Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides.   I stopped tak
Marisa

Marisa

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March 29th 2010 - 7 weeks post op

Well as you can tell it's been a while since I have blogged.   I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps.   On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day.   Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So f
Marisa

Marisa

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Monday 22, Feb 2010

Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...?   Just had to share the good news.    
Marisa

Marisa

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Sunday Feb 21, 2010

Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness
Marisa

Marisa

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Thursday 18th Feb 2010

Well last night was a terror. I could not sleep all night, and had pains that I guess were from not enough hydro. Although I did keep check on my bp and it was fine. today i took lorazepam and had a couple of naps.     Trying to keep from getting sore....sometimes I wonder if I am healing or not?   Is it my not being patient again????     Going crazy here..
Marisa

Marisa

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Feb 17, 2010

Well so far so good I think. I did notice something special today! From the cushings I had a very red neck and chest, like a v-shape, before I knew it was cushings I thought it was a sunburn. Well guess what!!! It's gone! My skin is all the same color now. I was so shocked and happy. Yes I know it is one little symptom of cushings but its gone. I have lots of pains in my muscles in my chest, from coughing and possibly picking up stuff I should not. But I had this prior to surgery but its wor
Marisa

Marisa

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Post Op 02-14-2010

I'm back. Glad the surgery is behind me. The surgeon looked like he was so happy to know he did a good job. ? He was proud of himself.   Was in intensive care from 2-9 to 2-11 then moved that evening to a regular room, then the surgeon comes in late that night and asks if I want to go home. Yes of course. So I was out three hours later. NO wheelchair either, I had to walk to the car right out of the hospital.   Today is Sunday, last night I started having a fever, I know I have to stress
Marisa

Marisa

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Got a pre op date

They called me back, and schedule another pre op for Feb 8th. So I go there and stay there until the next day for surgery. I hope that nothing spoils it this time. I kept them up to date on what changes were happening to me and they never said anything. I hope the high and low bp wont affect things and the ekg, I had last time they didnt like so they gave me an echo, and I am guessing everything is fine to go. At least it was back then.   Hopefully it will be again.
Marisa

Marisa

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Monday morning woes....

Well thought about it this past weekend about my pre op I had done on Dec 17th. Surgery originally scheduled for Jan 6th, but was messed up by the hospital oversight in no putting my name on the list for surgery that day. I had to go back home. New date for surgery is Feb 9th, next Tuesday....so I call the surgeons office and ask if the date of Dec 17th pre op was ok for a Feb 9th surgery. OH NO she says, certainly not. Well why didnt anyone reschedule me?????? Did they forget I exist???? Such
Marisa

Marisa

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Dissappointed in Dr.s and their Assistants

When I got home yesterday from work, I had a message on my phone from the surgeons assistant. First of all over a week ago I emailed the asst. with info on my crazy bp and blood sugar number...I had a few questions and never got a reply.   This past Wednesday I called and asked to speak to the same assistant I email and they gave her my message which was: I wanted to know what the medic alert bracelet is supposed to say. Next I wanted to know where to obtain the emergency kit with hydro, or
Marisa

Marisa

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TGIF

Well it's Friday today. I have one more week of work to go and a Monday before my surgery. Friday's are the most difficult, as all week I never get the sleep I need, and this morning I had a bad sinus headache. Had to stand in the hottest shower I could tolerate and make my headache go away. The changes in temperature here in Florida this year is so varied, everyone is having allergies and sinus problems as well as upper respiratory infections. I go around and spray our offices in our department
Marisa

Marisa

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Thursdays

I have to go to work everyday because I have to build up my time for time off for my surgery. I will still have to take Family Leave Medical Act for my time off as it will be without pay. But I will still have a job to come back to. Mondays are bad enough, but I have gained a bit of strength during the weekend when I get to take a little nap in the daytime. Nights are horrible as the cortisol levels are so high I wake up every hour on the hour or half hour, and get no rest.   By the time Thu
Marisa

Marisa

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Found my PCP

Called around and found my primary care physician. She is originally from Burma and is interested in Cushings. I met with her and showed her all my results and explained about the surgery date of Feb 9th, and that I will need assistance in weaning off the steroids. She was eager to learn about Cushings. She said she took her exam a few months ago, to renew her license, and they had many questions about Cushings on the exam. She said she was very interested and would learn a lot from me. Well nee
Marisa

Marisa

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My Bio for starters

Well I am a 52 year old female. I have had problems all my life from not having but 3 periods a year, difficulty getting pregnant, I do have two sons, ages 29 and 19. In between them I had 3 miscarriages. The 19 year old was a twin and one did not make it. Early in the pregnancy the twin's heartbeat stopped.   The doctors tried clomid which did nothing. I was told I was overweight, needed to lose, but I was not overweight. It was suggested I see a dietitian which I did and she put me on a 120
Marisa

Marisa

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