Over 10 Years of Support For Cushing's Patients!
I hope you have some time to read this as its a long story. It has been a very traumatic stage of my life that has affected all of us as a family.
Try never to sink into self-pity tho. I have my moments but fight it off and don't stay there long and move on. Usually I'm a positive person, always smiling and laughing around people [love laughter and a sense of humour!]. Made a decision a long time ago not be miserable 'AND' sick.
I was diagnosed with auto-immune deficiencies. Been very ill since I was around 20yrs old [maybe earlier around 15yrs - but cannot exactly pinpoint it so we go by the age I was when I had to have part of my thyroid removed as I was given 2yrs to live then]. But no-one really knew what was wrong with me for many yrs.
By the time I was diagnosed a lot of damage had been done to my body and I was almost completely bed-ridden, I could not even remember my husband or childrens names.
Over the next few years after exhaustive tests I was diagnosed with diabetes, Spondylitis, Hypothyroidism [I had no thyroid at all it was destroyed by a disease called Hashimoto Thyroiditis, which can cause deafness too as I was deaf for a little while], may even have Lupus but need some tests for that. All this had resulted in my cholesterol going off the charts, oedema, high blood pressure, no female hormones [had to have HRT - Hormone Replacement Therapy every 5-6 mnths] and the one I detest the most - obesity, the weight began to slowly pile on! But its not by being out of control its all thru multiple illnesses which forced me to live a secondary lifestyle.
I was also forced to rest for one whole year. I was not allowed to even do any light housewrk or garden wrk, I had been told that my body & internal organs had been thru a war zone and it would take up to a year or more before I would feel normal again. I had to exercise my brain by doing jigsaw puzzles every day, and that was 'ALL' I could cope with at the time.
Even though I gradually grew stronger, I have never been as strong as I used to be. So I had a year of rest, then a year of trying to regain my body strength [joined weigh-less once again, & went to gym 3x's a week], but I pushed it too hard and began to slow down rapidly.
By this time I knew the symptoms and went back to specialists for more tests, said I had to rest for 'ANOTHER' year as my body & organs were still weak, everything was low again.
My doctor then, could not understand how I was able to be sitting in front of him and talking as my whole body's vital signs were almost on zero - that means I was almost dead!! I was NEVER asked to go in hospital!
I had to let a lot of things go in my life, like hsewrk - could not cope with housewrk at all, still cannot do it, tried many times but it was so frustrating & extremely exhausting. If I tried to vacuum our lounge carpet I could only do half of it and had to lie down for the rest of the day. When I wanted to iron, all I could do was iron 3 shirts and that took me the whole day as it was an extremely physical & mental ordeal for me.
When my husband, Ian, came home from wrk I would sometimes cry thru sheer frustration, pain & exhaustion after I shared with him how I tried to cope with my day, because I so wanted to be a normal wife and mother, but could not do simple tasks that other people took for granted.
We had no help whatsoever and it was very difficult for my husband and son’s - who had to take over all the tasks that they should not have been doing. It did not help them school-wise and they did not do well at school. It wasn't easy for them to have a very sick Mom at home and I always felt so guilty abt it all. I even felt guilty about being so ill, kept blaming myself for them not doing well at school and doing all the hsewrk! Apart frm home they had no support at all and no empathy or sympathy frm friends or family, which contributed to their decision to live in England! I don't think they even talk abt it 2dy!
I eventually was forced to give up trying to go to gym & weigh-less as I had to rest again for another year. Never had any visits or visitors frm anyone. The love and support I so badly needed came frm my husband and son's at home.
Unbeknown to me at the time - Ian went around friends to find someone to do my housewrk [as I kept refusing, felt too guilty about not coping and wanting to do it all myself - but I was not coping at all!]. But, after many hours of discussions with Ian, I had to get rid of my pride and give housewrk up.
When I decided to do that quite a lot of guilt & condemnation was lifted from my shoulders and peace took over - it was wonderful and a hugh relief to all of us!!
My husband, bless him, has always been so gentle, kind, extremely loving and understanding thru it all. He copes with most things, even cooking. In the first yrs of cooking a few nights a week he never moaned or complained, and so enjoyed it, but this became a burden eventually, so we hired someone who is a friend who desperately needed some finances, to cook for us every night [that’s how weak I have become!!]. She loves cooking for us and she’s so grateful for the job. She is a wonderful blessing and so easy to get on with and agreeable with most things. I told her she’s an angel from God!
I am mostly housebound now and there has been many highs and lows, with few friends staying and many other friends leaving, there were days when I have felt that there was only me & God left!! But eventually that was ok with me.
I started Walk/Run for Life last year, so enjoyed it, [both my husband and I went], but this year I cannot even cope with that!
As to the question “Are you seeing an endocrinologist?” [from grandular-mass], well, that’s another long story:
I have seen many, many doctors and specialists here including two endocrinologists [which were the most awful so-called ‘specialists’ I have ever met! And I am very scared of going to another one as the ones I have seen had no respect for their patients, they were extremely abusive and downright rude, as well as being very cruel!]. The first one practices at our local hospital “Arwyp” called Dr. S. [recommended by our local GP] – my husband was with me and we went to talk to him about my thyroid [as I had been so ill], he talked for over 15mins non-stop and over-road anything we tried to say. This man seemed so nervous of us, he paced up and down, did not even give us a chance to tell him why we were there [we actually said NOTHING, jst Hi & bye] and all he could talk about were things concerning my weight [I did not even go to see him to ask about my weight, but about the fact I was feeling so ill, he just PRESUMED that I was there for a weight problem!!!], saying that I would never lose weight, I would always be fat, that it was a waste of time going to other doctors for all they will do is give me more pills and send me home. He said that I should never have had a thyroid operation in the first place [as if I’m the expert on that, I was so ill in my early 20’s that when the “specialists” eventually found I had a very over-active thyroid ‘Hyperthyroidism’ or Graves Disease, I was given 2yrs to live if I did not have 3 quarters of it removed. So I jst put my trust in them and had the operation. Amongst other symptoms I was sleeping 12hrs a day by then. A few yrs later my thyroid went the opposite way and I became very under-active – Hypothyroidism.]
He carried on in this kind of way and inbetween his sentences he would use foul language, often the 4 letter word!! My husband and I were shocked, puzzled, confused, and disgusted. When we were outside I burst into tears and my husband was fuming!! We went straight to our GP and he saw how upset we were, he listened to our story and was also very shocked over this man’s manner towards us. He said he would not refer anyone else to him.
A few years after this visit, [yes, it took YEARS again!!], I was eventually told I had hashimoto thyroiditis and it had completely destroyed the rest of my thyroid – I now had no thyroid at all!!
I related my story to someone a few months ago who’s a paramedic there and he said, “that is typical of Dr. S, he’s very professional and straight!” I said, “WHAT!! That is NOT being “professional” or “straight”, that is being downright rude, abusive, and cruel!! NO ‘true professional’ would treat their patients that way or talk like that. What came out of his mouth was very UNproffessional and he should not be allowed to practice with that bad attitude!”
Then I had severe back problems and I asked my diabetic surgeon at the Centre for Diabetes and Endocrinology, if I could visit an endocrinologist at the Centre [all the surgeons there are also endocrinologists except the one I had!]. So he made an appointment for me to see a lady endocrinologist, Dr. B , her office is right next to my diabetic surgeon. So as soon as I was seated she started a tirade, a prolonged outburst of vehement speech against my weight [and I only went to ask if my thyroid problem can cause any severe back pain!!!]. She just told me that its an absolute fallacy that having thyroid troubles causes weight problems, that she has never come across any proof yet for this [I thought what on earth is wrong with this woman, she had no idea what I had been thru for 20yrs, she did not ask what was I there for, or what my name was or even shake my hand, she was almost spitting at me with disgust!!]. I should have walked out then but I was so fatigued and confused over her attack that I was just glued to my seat! She did ask a few questions about my health history and when I wasn’t too sure on some of them she started another tirade about why haven’t I written all this down, that I should have all my medical history with me [first time I have heard of this!! Never knew you had to carry all your medical records around with you from the time you had your tonsils out since you were a little girl!!].
She carried on with her bullying and hate speech and said, Why haven’t I been to a gynaecologist, I am fully responsible for my health [so I thought - well, what am I doing here then!! – and she gave me no time or respect to reply to anything she said!], she just kept on about my weight!, and that I had no excuse and I must exercise and eat right, and I MUST try harder ………. So she went on and on and on ……… she was not kind about any of this at all. There was no encouragement coming from her. When she examined me on the exam bed she lifted up part of my tummy and said, look at this! This is disgusting and you should be ashamed of yourself!
When I came away from there I felt shell-shocked!! I was so numb from her attack and just did not know what to make of it all. My father-in-law had taken me there, he took me home but I did not say anything to him. Later in the evening when my husband came home and he asked how it all went, I just sobbed. He was so concerned and just held me. When I was able to tell him about this woman, he was so annoyed that the next day he phoned my diabetic surgeon who advised us to complain in writing about her to the clinic management.
We never did! As nothing would be done about it anyway!! In this country we don’t have a leg to stand on and no support, as all the so called ‘professionals’ stick together.
Another year or so later [after this last episode with such a nasty piece of work] never went to her again, I was diagnosed with Spondylitis [I now know the reason for the back pain!!]
I know this is a long email - I hope you don't mind? Just wanted to explain this side of my life to you as it really is a long story.
But I have had this very large hump on my neck for years. I first noticed it when I was about 22yrs old and it was small then. I did see one doctor many yrs ago who said I had the Buffalo Syndrome, with all the deep stretch marks, weight around the middle of my body, and hump. Said it was caused by a tumour on the brain or lung. He took blood tests, waited for 2 wks [my husband and I were so worried about it all], then was told it was nothing after all. Now I’m experiencing even more health problems, very weak in my muscles, can hardly get up from a chair sometimes and I once again wondered about this huge hump on my neck. So I decided to do a search in yahoo and look for ‘buffalo hump’. So many things came up about Cushing's disease, and Cushing's syndrome, and I checked out the symptoms – I have nearly all of them! Then I came across this forum and decided to join. So after a very loooooooooooooooooooong story – here I am and wanting answers. I hope I find them.