Well, I was officially diagnosed with a 2nd reccurrance a week ago and on Monday 8th October 2007 I go into hospital for 5 days as an in-patient for 'investigations'...on my most recent MRI it looks as if the recent pituitary appoplexy episode has caused my residual tumour to collapse into itself and has shrunk. By all intents and purposes after 2 surgeries and radiotherapy I should be heading for a cure but I am not and they are all baffled by it hence the tests. It could still be a pituitary s
I know that with me that there is a fighing soul that won't let me quit. God is on my side and he will direct me to the right Doctors and he will show them what to do. If I wrote a testimony you would see how far I have came.
Life sometimes is what you make it. We have the freedom of making choices with our life. There are many valleys and a lots of hills but I grow everyday. As God has told me he is not finished with me. I now see this. There is a lots that has to be done before I go.
OK, I totally get that as a Cushie my powers of concentration and memory are somewhat less than reliable. But c'mon...forgetting to get food for my family?! And yet, that's exactly what I did! Since my husband (and caregiver) was hospitalized for a month back in May, we've been ordering every week from 'Meals-on-Wheels'. Neither of us is well enough to shop or cook, so the once-a-week delivery of frozen meals is how we're managing. The kids don't care, as long as there's food on the table. It
I saw my Endo for the first time in the hospital (thats one way to see them sooner, but I would not reccomend it) and yesterday I got to see the Endo for the first time in his office, and once again I almost burst into tears. It was probably one of the most positive if not THE most positive experiences I have ever had in a Dr's office.
Not once did he call me crazy... not once did he say I was just fat and anxious... hypochindriac was never even hinted at... nope. What he did say was "th
As this is my first posting, I thought perhaps a little history would be in order. Here's the 'me-in-a-nutshell' that I posted on my Facebook page:
Previous to 2002 I was the stereotypical busy Mom. I worked full-time at a job I loved, commuted 3 hours a day, tried to raise my 3 youngin's the best way I could, took care of Hubby, and spent time with friends whenever possible.
Then, in October of 2002, at age 39, everything fell apart. I was diagnosed with Polymyalgia Rheumatica and h
Today I get a call from the Hospital... my lab tests have come back (the ones from the ER) and my fractioned metanephrines and a cortisol test both came back at 3x normal range... chances are my Endo will take these results with a grain of salt since there was some stress involved at the time of testing (being in the ER and admitted with chest pains)
Where to start where to start...
I am currently being tested for Pheochromocytoma and Cushings, my Endo (who I was supposed to see for the first time on Oct. 1st but saw instead while admitted to the hospital) seems to think that I am just super lucky and have BOTH of them... story of my life it seems because I have always been on the low side of the percentages.
Low side of percentages? (My own lil explination for the weirdness that is me)
If something has a very low percent chance
I didn't pass my EKG. My surgery's on Oct. 1st (this Monday). I need "Cardiac Clearance". I'm about to see the Cardiologist now. Will return with more details.......
I've been getting very tired alot lately - the weight is still creeping up and its quite worrying. I am past my maximum ever weight. I start a diet and exercise class tomorrow - bought myself some new trainers at the weekend in preparation. I desperately want the appointment on Thursday to be positive - no sign of a Cushings return, but I am not holding my breath as I do believe it is back. It makes me incredibly sad. I just so wat a normal life again - I had it for a brief time recently and it
Earlier this week I went to the doctors again. And I can honestly say that I actually left the doctors office with a smile. I had to meet with both Dr. Fleseriu and then the surgeon.
First I met with Dr. Fleseriu. She informed me that I have Full-Blown Cushing's. Whatever that means I'm not quite sure. She wouldn't give me a script for sleep because she doesn't want me to be on very many medications prior to surgery. She also told me that I will HATE her after surgery along with the rest of
I've been feeling out of sorts for the past week and a half...really, really fed up really and not knowing why. I have been incredibly grumpy and feeling tired and a bit rough - I do worry that the signs of Cushings are starting to surface again but quickly put that thought to the back of my mind and try not to think too hard. My cheeks are so flushed right now and the hump is very prominent - its so frustrating. I seem to be running around like a headless chicken right now too - trying to do so
It's been a bit of a rollercoaster the past few months...getting to grips with juggling everything and the prospect of facing more testing. Work has been great and I am working with a very supportive group of people who have become good friends and have brought some much needed laughter and light relief back into my life. Despite still having loss of vision in my left eye and not feeling 100% I have managed to do the work and got a good appraisal.
I was a bit shocked when I was told my corti
I posted this as my bios (although it hasn't been published yet), and thought I'd go ahead and share it now. It's kinda rant-like because this disease brings up a lot of issues for me.
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The old me: I used to be very energetic, I used to be able to swim for an hour non-stop without taking a break, I used to be very alive socially, I used to enjoy being around people, I used to work very hard a
Well I'm very proud of myself. I went in and had the CSS Procedure done without being knocked out. I was originally scheduled for an IPSS Procedure but then on Thursday they called and said that they wanted to do the CSS Procedure instead. They didn't say why exactly the change but who cares, at least I'm getting somewhere.
The procedure itself wasn't all that bad. All I really felt was when they put the numbing stuff in my leg (which burned just a little) and then I could feel them moving t
Today I could not get out of bed. I felt bad because my wonderful husband ran all my errands. I just couldnt get up and showered. My legs have been crampy all day I have been really swollen again. I dont know how much more I can take. When I went out for medicataion today I had to pull the car over twice because my eyes were having muscle spasims first it was just the left eye then both eyes. I had to stop and hold my face for a while. The sweating is getting bad too I feel so embarrased when I
Ok so my doctor wanted me to keep track of my day to day progress.
So I thought I would start with how I felt last night. I was having some really bad leg cramps and a fever, I am not quite sure if it is from the lower dose of steriods, but I started my period last night and I always get pain in my legs and calfs when I menstrate. I was really happy it was on time this month since I had my baby I have been pretty regular I was a week late last month but I cycled 28 days later with last nigh
Once again I'm a victim of insomnia. Damn it I was really liking sleeping like NORMAL people. You know going to bed one day and waking up the next, but now I'm going to bed one day and waking up the same day. And that's only if I'm able to sleep at all because when this happens I only sleep a little bit and not very restful either.
Since I've been keeping track of my sleeping patterns I've noticed that everyday it's getting later and later before I'm able to fall asleep and the amount of tim
I just can't find any answers of where I am, what I should expect or the best Doctors, so I will blog I guess.
I think that the more I think about what can be the matter and not knowing which way to go just depresses me. I know there is a lots of people a lots worst than me and I pray that they will find the help they need. I just wish I could understand me and then maybe I could help others too. I know God has left me here for a reason and a purpose because I tried to leave this body when I
Yesterday was probably the worse Cushing's day I've ever experienced so far. It all started out with sleeping a lot. I pretty much spent the entire day asleep.
Once I finally woke up I woke up with a terrible headache (scale 1 to 10 - probably a 9). And my entire body was so sore, I was literally unable to get out of bed. I tried unrepeatable to watch a movie but feel asleep each time. It was just a horrible day in general.
It was so bad that my dad even brought me home dinner and brough
I think that waiting for answers to medical problems is very hard. I am going to Endo. Sept. 6, 2007 and don't know what kind of test will be done. I know that my body is not like it should be and that I am carrying around an extra person with my weight. I Know that I have a empty sella and that I am missing part of the Pituitary gland. I have been told that Endo Doctors do only basis testing so just what am I too expect? Who is a good Neuroendo. Doctor? I am willing to travel and what tes
Well, things have been quite good. I don't know if my new puppy has anything to do with it, but she sure does bring som brightness into this dark life of mine. She is a reason to get outside, even if it's only for a short time.
I haven't been having the joint pains since I last posted and that alone feels great. I have had energy to do a bit and have tried not to overdo it like I usually do, when I get this way. It's so easy to fool yourself into beliving that you can do everything you used
I know that apart of this terrible disease is depression and I've learned to deal with that for the most part. But what am I suppose to do when I feel so secluded from everyone?
In the beginning I was pretty much secluded from my friends and people that wanted to be around me but now I'm just secluded by everyone in general. In the beginning I was secluding myself by choice, well not exactly by choice but I had the opportunity to join in conversation and stuff like that with other human bein
