Its been a rough few weeks. Everything has gone out of whack and on a daily basis I am not sure what is going on - its very worrying. My diabetes is uncontrolled and my blood sugars are exceeding 10, not good for me. My weight just keeps going up - its so frustrating. The other day I put on half a stone over night!! My cheeks are still bright red and I just feel so tired all the time. Last week I had to take some time off of work because I felt like a truck had hit me and what caused me the most
It me again I am still searching for that person who knows what i have been through. Being Inflickted with this sice I was 18 months old. Dealing with migraines, breast cancer, lung cancer, chest wall sarcoma, depression, mood swings , non existant sex drive wanting a baby and being told it's not likely to happen. and I'm only 38yrs old. been in more comas as a child can't even count them all kidney stones 3 times so far. Severe cellulitus, which turned into an addrenal crisis. thank you
I am new to blogging. Please excuse me if I make some mistakes along with way.
First I want to get this straight..I am not a whiner. But, lately, that is all I seem to be doing. I am totally miserable and uncomfortable. I have read through some of the blogs out there and I must admit, I am suffering the same symptoms that most of you are going through. The buffalo humps on the neck, shoulders, back, arms, legs, I even have them on my face...I sometimes refer to myself as gargoyle. I
Hi My name is Kelly and I have been living without adrenals for 37years. For most of my life I thought I was the only one out there . I am just starting to see that I am not. I would love to chat with anyone who can actually say they know what I have delt with growing up with out adrenals. as far as I know I was the youngest to ever have the surgery. Which is great because it paved the way for others to be able to get treated. but It is still lonely never knowing or talking to anther person
I got my test results back from the one doctor. I have a 362 cholesterol level. Not much else showed - low sodium, high platelets, high WBC, High RDW, and low MPV. From what I understand some of this is caused by the Tegretol. I think they are taking me off of it soon. I'll know more after we go over the EEG.
Well I finally found a Doctor that thinks something is wrong with me beside being overwight. I had my first appointment on May 2, 2008 at MUSC with Dr. J. Fernandes. I found out about her from Dr. F"s website from Cal. He recommends her for people would cannot and does not have the opportunties to go to California.
I through at first my appointment was doomed, because we went out to the car that morning from the motel and our battery was dead. We found a person from motel and we jumped it o
Well the 5 days in the hospital was pure hell and I don't think the video EEG will answer anything. I am glad to be out. I am in the process of doing my first UFC. Maybe I'll finally get some answers. My PCP says I've got the highest cholesterol levels he's ever seen. That and the high blood pressure and low creatine and they are still trying to tell me it is psychological. Go figure.
Well they found me a bed yesterday afternoon. I actually slept last nigh and had about a half an hour of plain speech before I couldn't talk right again.
Well, the EEG technician came in and spoke with me. He did not see any evidence of a seizure but tonight we are not going to be taking the Tegretol and see if it comes out different.
He had an idea of what it could be. He said you can have a stroke so small it doesn't get detected on an MRI but if it hits the right area of the brain can
Well I was up all night as usual and I'm about to go to sleep. Idk yet if the hospital has a bed available today. Everything is hurry up and wait.
I still can't speak and feel a little dizzy and I have a litle bit of chest pain. I took an aspirin. I hope that does the trick. I am not as sore yet this morning and am in a calm mood.
I'll update again later.
I wish everyone has a great day. I know with us they are few aand far between.
I had an unevntful day and not as sore but my speech is still out. I didn't do much today. Cooked dinner and did dishes and played on the computer. I was so exhausted all day. I felt like something was sucking all the energy out of me.
I hope the hospital has an open bed for me tomorrow.
Sometimes I question is this all in my mind? Is it mental illness? Am I getting fatter because I am lazy? I didn't think mental illness could physically hurt so bad. Maybe it's my fault in some way.
I slept from 8AM to 2PM today. I am still very sore and can't talk again.
The hospital called and said they don't have a bed ready again. So I have to wait. This was set up months ago. I did my part. So much for hope. I don't think I really need a video EEG but this could have been an outlet for further testing. Idk.
Everything's a struggle anymore.
April 29th, 2008
Well I went to sleep around 10:30 AM and woke up around 4PM. I woke up talking fine but boy am I in pain. The back of my neck hurts and my left hip - every time I step on that leg I see stars. And my left shoulder hurts and I have a slight headache like pressure behind my neck.
The good news is I am finally speaking fine and I actually have a some energy. I don't know how long it will last. I usually only get a couple of hours.
I have to pack for my video EEG. I
I maybe dozed off for an hour last night and was woken up by the pain in my feet and my left hip. I don't know why doctors don't acknowledge that I am in pain. I stayed up the rest of the night watching tv and eating just like every other night. I had a hell of an appetite last night.
This morning the only things I can speak come out as total gibberish. I really hate this. I pray that they find an answer soon.
I go into the hospital today. I hope this isn't a waste of time.
That didn't last long. It is now 6:16 and my speech is slurred again. I got really tired out of the blue and my speech started slurring. That's the way it usually works. I knew it was coming I could feel it.
I am so damned sore. I feel like I've been hit by a truck. My feet feel as though if I step down too hard they would break at the ankles.
Don't mind me I am just keeping a log in case I need it to help with a diagnosis.
This is my first blog here. I usually post on myspace but I think this is a more appropriate place to post how I am feeling and what's going on with my doctors.
I didn't sleep again last night which is not unusual for me. I went to the neurologist and am up another three pounds since my primary weighed me last week. Today I go in for my first test for Cushing's and some fasting bloodwork. Since I usually only eat at night this was hard for me. I am really nauseous and can't wait for it to be
I don't have time today to do an entire history but the short version is......
Went to work one day (I own a hair salon) and the girls were teasing me about being pregnant. I was going along with it because I did look pregnant. After a few days of looking (and feeling) this way, I took a home pregnancy test, took a pic of the negative results with my cell camera, and sent it to everyone so they would know for sure that i wasn't.
This was funny only because my husband has had a vasectomy
OMG, I?m blogging now!!! What next? I never thought I would be putting my inner most thoughts on the web for people to see. Actually, I doubt anyone will read this but it helps to think someone might. Its OK to scream into the darkness as long as you think someone might hear. The screaming into your own head is what messes you up.
I have this rule about talking with my family:
20% about me
20% about my husband / son or whoever I am talking to
10% about family
50% about anything
Well another day down, I spent the biggest part of the day as a vegetable. I ached all over and had a headache and a cough. Just my usual cough, nothing fancy. On the upside I spent it in my jammies, and I always enjoy that!!!
My daughter Elizabeth is still looking for a job, I hope she gets one soon. She needs one for her self esteem, let alone to help with the social anxiety. I will be glad when she starts back to college, but I wonder if she is picking the right career. Oh well, I have to
I sometimes wonder if I will ever get an answer to my questions about my health. I also wonder if I will ever feel "good" again. I am just so sick and tired of being sick and tired.
I was a little disappointed in my husband last night, I told him that if this is Cushings, that I wanted him to read up on it so that he knew what I was dealing with. He didn't understand why he would need to do that, that it wasn't like he was sick!! Then he asked if after they got a diagnosis an I am "cured" w
Well I guess this is the first step. I was diagnosed with PCO last year but they did the ultrasounds and the fert specialist said that it was mild cause he couldn't see any cists. I came back with high androgen lvls.
I have had difficulty with weight since I was a teen.. I developed the hump in middle school some where between 13-15... all I remember is a peer pointing it out and fankly can't forget the embarrasment... I just turned 29 and I am wanting to start a family. Only one problem I d
What she said:
It sure has been a long year and our journey is far from over as anyone dealing with Cushing?s knows. Claudie and I have been busy with working, school and moving. I wanted to stop by give everyone a quick update. It is hard to keep up it because things her are never conclusive and always changing.
After surgery Claudie?s health progressed slowly. I can say she is not going down hill anymore. I pray that gives hope to everyone suffering for this strange and horrible disease. Her
What she said:
Yesterday Claudie came to me and said mom look at this. She lifted her arm and showed me spits; .like knife slices along one her big stretch marks. This stretch mark goes from the front of her shoulder under her arm and down the side of her breast, it is 6 inches wide. It is like the skin sloughed off and left slice holes in the skin about 1/2 inch deep.
It looks like the skin is lifting away from the underneath skin like this whole chunk could be lifting off. There are grey spo