I haven't been to good at keeping up with the blog thing. I should, cause its a good way of keeping track of stuff. Anyhow, here is my update since last time:
The fatiuge thing is hanging on there this time. I can't seem to get rid of it. I've been sleeping since easter...
My doctor has put me on blood pressure medication. Actually I am taking a pill that is both a water and blood pressure pill. I started it about a week ago and the water is almost all gone! I no longer have problems be
It's 8:30 PM and I should just go to bed. I am totaly wasted and "staring into space" as MelanieUK put it in my "whining" post today. Someone chewed on me and spit me out again.
My muscles are weak, and my back is tense. I have terrible pain under my feet everytime I try to walk and I am itching like someone pays me to do so. I am also having nice body twitches. No idea what it is, but I feel something in my stomach. Almost like when I was pregnant and could feel the baby moving around ins
Briefly:
what we already knew and confirmed -
prolactin elevated
still have pituitary tumor (4mm x 3mm)
Becky is weird
new info:
sounds like ***Cushings***
sounds like ***PANhypopit***
starting replacement thyroid
increasing GH
starting HRT
more testing to determine whether pit tumor and/or adrenals need to be excavated
There were several midnight serum cortisols that were elevated - up to 13.5 - and he said over 5 is Cushings territory
Said my thyroid level is 'rock-
Today is a better day. I had a low run that lasted about a week and I'm starting to come out of it. I was up until 3:30am this morning. It's funny that during my highs where I get little sleep, I feel better than when I get tons of sleep in my lows. I've had a problem with anxiety lately. I can feel it coming on early. I get pressure in my chest and become very aware of my breathing. I get really concerned that I'm not getting enough air or that I'm wheezing when I'm not. No wonder I've been lab
Hmm. I didn't get a call all day long while at work. So I called and left a message wondering if I was going to hear from the doctor. I get a call back that I will hear from him today (Tuesday).
It's after midnight my time and I haven't heard from him yet......its' so hard to be a patient patient when others are getting their answers and they saw the same doctor at the same time or after.... I've already been doing this so long. I just want to feel better
Waiting sucks! I was told I would be called with information/results yesterday. I waited. And waited. I had sent an email as requested to remind to call me. Still, no call.
Today, I called and left a message that I am anxiously awaiting a response.
By the time I get home for lunch, there is a response to my email that I will have a call telling me that I will be called next week.
This afternoon, I get a call telling me I will be called Tuesday.
Back to waiting......
I saw my therapist today and told her all about yesterdays conversation with the endo. She wasn't surprised that he mentioned bi-polar and actually thought he'd say something sooner. She explained to me what bi-polar is- how people have these "highs" (mania) and "lows" (depression). She said that bi-polar disorder can also mask as other medical conditions and how he shouldn't be making this kind of diagnosis without ruling out the medical issues. She then asked me several questions and did a scr
I've been on this site since October and am starting to really get into it. It's the most amazing site and I don't know what I'd do if I didn't have it. Thank God for it! I've been tracking my symptoms and charting as much as possible, but I'm not really journaling and thought that it would be a good idea.
Today was a bad day. I was very angry with my endocrinologist who had the nerve to tell me not to go to see Dr. F as it would be in vain. He shared with me today that he thinks I'm bi-pol
Its been a while since I posted to my blog and so, so much has happened. I had my radiotherapy and had no real side effects apart from a bit of soreness. I have seen a remarkable improvement in my general health and well being. I have lost 2 stone in weight to date since August last year and I feel great. I am wearing smaller clothes and can actually start shopping in normal stores as I have hit that top end of the clothes size. Fabulous - still a long, long way to go, around 5 stone still to lo
I am sooooo excited! My brother, whom I previously mentioned in an entry, is definitely coming with my sister-in-law to look at homes in the area. They'll be flying in on May 26th! PSYCHE!
No news from the insurance company. That REALLY ticks me off! But I do believe that the Lord has His own time, and it does not often go with our time frame. After reading about Monica and her success, although as difficult as it was, it is encouraging to the rest of us who are in limbo. No, not th
Wow! I guess I haven't been on the boards for 2 weeks or so I see that I have dozens of PMs to read, many emails to check/answer and I missed at least one person who had ordered an Awareness Bracelet that I never sent
My Monday appointment with the surgeon went ok. He took blood/urine and was going to send me for CT scans. That day, as I recall was very cold here with a wind chill of something like -7o
I came home and taught my piano students, as usual.
Tuesday morning I woke up a
Hello Everyone!
WOW! It's been almost five monthes since I've written here. I was going through a VERY tough time. Depression took hold of me due to the fact that I have been in limbo regarding moving forward to see Dr. Ludlam. He is now out in Seattle Washington at Swedish Medical. My primary did finally give me a referral but now we wait for the insurance to decide whether it will pay for the visits and testing. If they won't pay all, we could probably manage 80 % but no less.
Judy asked to have a bit of our history and my turned into a book so I'm putting it here.
I'm not sure about posting my history, but here goes. As a child I loved to draw, In high school art was of course my favorite class. In 1972 I started a community college with my major being art. I had very little support in this. I think that my Mother thought community college was a safe place for me to be until I got married. For her generation of thinking a woman got married for safty, support an
In 2001 I was a active 16 year old 5'8 and very happy. The only health problem. I had was
AdHD which to an extent I had out grown. I weighed about 137lbs. I was happy and doing fine in school.
At the time I was a sophmore. My freades were great and I had a boyfriend. The around october everything changed. I got really sick. My liver and spleen swelled up I had gotten mono, but unlike normal people, who it didn't phase it knocked me off my feet. At the same times my immune system bombed I start
It is 4:32 in the morning I am losing so much sleep over the last three days I couldn't have slept more then four hours a day and I can't seem to go to bed before five in the morning it is driving me crazy. I would love to sleep. Especially tonight or today what ever it is because my hubby doesn't work tomorrow and it would be nice to wake up to him next to me instead of him waking me up going lets go at 5:45 in the morning. Today I get to sleep in if my body will let me. I am making myself
End of November/December has been taken up with my radiotherapy treatment - here is the link to a thread I made about my treatment:
http://cushings.invisionzone.com/index.php?showtopic=18634
Its now the end of December and a New Year is dawning...I am facing it like I have each previous year and that is with optimism and hope but there is a difference this time - my hope is stronger and I feel good about the year to come. I think it will be filled with new beginnings and new challenges t
Hi there! :biggrin:
I hope everyone has a Happy New Year!
I see my pcp in January to discuss the results of my urine free cortisol test that came back elevated in December. Unfortunately, this points to a recurrence of my Cushing's disease. My pcp had a suspecion when I saw him in October because my blood pressure was elevated like it was before surgery. :frown: I did a stress test during this visit, and during the test, my blood pressure became really erractic. The good news is my h
I'm so pleased with myself. This morning I just did a local "Turkey Trot", just the walking part, but I made it 2 miles and didn't need the extra cortisone I brought just in case.
This event benefits the local Life With Cancer center where I take some classes. It's such a neat feeling to be out there with 4,000 others, all running/walking/trotting/pushing strollers/walking dogs for a common cause. This event today took in over $250,000. Amazing!
My son and husband ran (one way faste
Since I had surgery for kidney cancer May 9, 2006, I've been looking around for somewhere to read and talk about this with other survivors (hopefully!) I haven't found anyplace I'd like to visit or feel comfortable with yet, so I decided to make a new blog here.
I'm sure that my recovery will be much the same as for any other major abdominal surgery, although I'd like it to be faster
Before my surgery, I didn't have time really to consider that I had cancer, and what it meant for my lif
This will have to be brief as I am just about to take little one to school. Life is so busy right now. We moved to our new apartment a couple of weeks ago and I am loving it there. It is very convenient for everything and it's our own place !! We are starting to make plans again and that is good.
I started a part time evening job at a local store four nights a week and fell so good to be back at work and amongst people. The customers are great and I get to have a good laugh and have made s
Yesterday was my breast clinic appointment. The results were all clear. Finally, a result I wanted! I went to see my doctor today and she is going to look into the endometriosis. She says the neuro isn't prepared to see me for the raised intracranial pressure. He is determined his diagnosis of migraine was correct, and won't budge. It is a very sad state of affairs that he won't even discuss it with me. Oh well. Back to the drawing board. I have to find another way to get tested. And I will f
My sister told me she found out she has breast cancer a few days ago, and I was the first phone call she made. I was devastated. She is my big sissy. She also has a pituitary tumor, rare yes I know. Hers thank God was only prolactin, and is treated with a weekly pill. I live in California and she lives in Texas, and I flew to see her in May and while I was there she had a mamogram that came out clear, so her cancer is very early. She says that is a good thing. I have only had bad experiences whe
