I take Adcal D3 (effervescent) night and morning and, although over these last few years my level has improved and it’s a while since it was tested, I guess it is still at the low end of normal, as I still have stinging bone pain.
Yes it’s so sad you’ve had to suffer all these years, you do get to a stage where you think, ‘what’s the point?’ as far as doctors are concerned. I don’t get it, to become a doctor you need a higher level of intelligence and a certain level of ‘staying power’ to undergo such lengthy training in the first place, yet having achieved this accolade of worthiness, when faced with a complex case, difficult to unravel, many of them just can’t be bothered – have they used up all of their conscientiousness during their training, or is there just no incentive for them to deal with it ? They get paid anyway and they get paid well enough, it’s a pity their pay is not performance related, now that would sort out the real wheat from the chaff. What happened to all the ‘House MD’s’ of this world ?
For now, we have to be our own advocates and Look, Listen and Learn, as they used to say at school. No doubt you will have developed coping mechanisms along the way, like many of us, that have helped you get by, we all need to share these and read, as others publicise theirs and make the necessary adjustments to lifestyle for maximum comfort.
I know it’s so difficult when you’ve children to look after and my heart goes out to all of you in this position. So, if this is you, try and get your children involved, look for little ways to make chores fun, like see who can pair the most socks and silly stuff like that, or something they may be curious about or like doing, like ‘weighing’ out the ingredients for a cake, or rewarding, like once they’ve changed their bedding they can make a fancy ice-cream sundae, etc. If you can ‘offload’ some of the menial energy consuming tasks, so all you are doing is supervising, hey your kids are learning to look after themselves and you are getting (a little more) rest.
Thanks again Barbara. I appreciate your help. It has to be the middle of the night in the UK. It is so cool to be able to talk with others in far off places. I work in the medical profession and for years taught medical students, residents, fellows, and medical technology students. It is said to say that the next generation of doctors do just what they need to get by. Very few go the extra mile. Probably close to 85 per cent could care less about being a good a doctor but more about the status and the money. The sad thing is a good doctor does not make a lot of money for the amount of work involved. As it is said what do you call a doctor that finished last in medical school? Doctor! Whether you are first or last you graduate. It does not look good for the school if their pass rate is low. I have gotten better at picking good doctors, but even if you have a good eager doctor in the beginning the real trick is if they stay that way. I just went back to my rheumatologist last week and it was a 180. She was a great doctor the first time I saw her and this time she was awful. A complete waste of time and money. I left in tears.
I think in some ways I am to blame for doctors not diagnosing me. I can’t possibly bring up all my symptoms in one visit. Because of my age and my lax ligaments I went to a dozen orthopedic doctors before I found one who wanted to help me. The rest saw me a huge liability and a risk. After all they don’t want to be sued and they could tell I was not an easy case. I started eliminating things from my medical history so I could get seen. For example I never mentioned my orthostatic intolerance, my heart murmur, irregular heart beat, chest pain, or that I had extensive orthodontic and periodontal surgery. I never knew that my flexibility was abnormal. I did show my orthopedic some tricks after he mentioned how lose I was. His mouth almost dropped to the floor. However, no one has looked at my abnormal scaring or lose skin along with all the other signs. The biggest problem I think is you go to one doctor for dermatology, one for pain, one for orthopedic, etc. Therefore, no one doctor looks at the big picture of your overalls health. Doctor are always running late always overbooked, so therefore pass you one to the next doctor. No one doctor stops and says “hey! let me be the one to help this patient “. They assume the next doctor will do that instead.
I do put my kids to work. Although my son is the only one that helps much. My other kids are 1 & 2. Their helping is different! 🙂 and not always helpful. They keep me going. I have to be here for them. Even though it is in a quite limited state.
How long have you been disabled? Do you have kids? Do they have EDS too? I am sure my kids do. I meet with a genentist in August so I hope she can help me and my family decide what type(s) we have, and what other defects we have.
I have EDS, orthostatic intolerance, asthma, severe degenerative joint and bone disease, depression, heart murmur, gall bladder disease and removal, hernias and hernia repair, had a brain bleed and other bleeding problems/ brusing, TMJ and other orthodontic and periodontal problems, arthritis, GERD, poly cystic ovarian disease. So maybe what you mentiond about HRT would help. The PCOD affects my hormones and I have had problems since I was a teen. Most symptoms became worst as a teen. As you see the list is long and there is even more. It is overwhelming to say the least.