Doctor Can You Help Me? My Body Sucks!

 

I am seeing the endocrinologist this week. I hope I can get more help and someone who listens. My testosterone is high, my face looks very mannish. Some years ago, I was forced off my androgen blocker due to kidney problems and medication. It did make my weight go up somewhat, I was in the mid 400s though I was able to be stabilized ending up in low 500s.

 Digging out 20 plus year old medical records was weird and triggering, they got so much wrong. I was constantly in the hospital from cellulitis infections, that's how I spent my late 20s and 30s, and some of those would put me in the hospital for weeks and weeks and leave me ill for months. I had mild feelings of being pissed about that, I should have been enjoying my youth and building a life and career instead of being constantly ill. Undiagnosed Lipedema and other problems ravaged my life. I lost out on so much. 

The constant asthma attacks and diagnosis of "chronic bronchitis by my 20s also led me to where I am today.. There was weird other diagnoses, like "purigo nodularis" when my entire body broke out, which I believe was vasculitis today. It was definitely a sign of autoimmune problems gone amuk. They were doing ANA tests back then citing "inconclusive", but I should have been at a rheumatologist very early on. 

I've made these records very comprehensive for this doctor and have a pictorial "weight history" even of recent weights. Some pictures are utterly shocking, including circa 1997, my face is a giant moon, my stomach has ballooned out, my legs are swelling, I'm wearing one of the last pair of pants that will ever fit but not for long. I'm standing between Aunt Confused and my father. I look BAD, later that picture would make me angry, because they just sent me back to Chicago to live in poverty instead of offering any help. Some may say well you were already an adult, but it seems if a family wants you to stay alive, there may have been different choices. It's a disturbing picture. Of course my father was so sick, I understand being put on the backburner somewhat, but I was a person too.

 I also have the pictures from when I hit peak weight, 700lbs, may down a little bit from that, around my wedding. There's times I get angry thinking why didn't anyone put me in a hospital? I used to beg them to, doctors and all.

I then include pictures after the 250 weight loss where I got down to the 400s and those of the last 20 years. One can see my legs swelling, one picture from 2001, they are like giant columns, that picture is a shocking protrayal of Lipedema doing it's thing. There's a 2005 picture of my legs grown huge, by then I was going to a clinic 30 miles away from my house for some wrapping but I was still almost 10 years off from diagnosis. 

There's old medical records I included including all my tests with high cortisols, high ACTH, etc. I even enclosed my order for a pituitary MRI I never could get done. It sucks, I tried going to places 150 miles away, sitting MRIs, but was too fat to sit, but I couldn't lay flat in the few MRIs I found. My adrenal scan which was successful but negative is included as well. There reports about "metabolic syndrome" included too.

One neurologist report points to my multifocal tic disorder, but I hadn't realized she wondered about me having full Tourette's as well. I do have tics all the time. A lot of people with autism have Tourette's. There's an embarrassing part of that report because I said sometimes in extreme anxiety, I would cuss and feel unable to hold it back. I learned to hide tics all my life, I move in a way to hide them, but at home I do fully tic and this includes some vocalizations. It's weird I got so many problems, I rarely mention this one to doctors. She told me at the time my tics were more subtle, but especially with the constant facial tics, a trained eye could see them. Sometimes I would sit in a group of people and say "yeah", without wanting to but would cough to cover it up. 

I just list what I want from the doctor, it's easier then talking. I started doing that years ago, not wanting communication lost in my deafness and autism. I list what I want. Having two different kind of kidney stones is scary, that alone points to problems. My kidney doctor gave me the referral. He was in shock at adrenal results I got from 25 years ago. I'm glad he was able to find old records. My old doctor in my small town I think is still in practice though he's probably near retirement age. I put in the letter announcing I have Lipedema stage 4/lipolymphedema, so doctors realize this is an official diagnosis. I have more records with more details on my Lipedema.

I am hoping I don't get the you're fat, lose weight run around, I probably have grown too old for weight loss surgery. Even if I made that choice I want the full monte--the dudodenal switch, where there's no chance of regain. One major issue is I am short on all vitamins now and have to supplement. Hopefully Tammy Slayton's doctor's got her that one her obesity is so severe. If she just got RNY, a regain is in her future, but on the show they said they were removing a third of her intestines, so it probably was a DS weight loss surgery. I noticed her weight loss even being in that rehab for over a year seemed minimal, there was some. It is weird for me to watch that show because I almost did go to that rehab around 10 years ago. I'm more mobile [well barely] than most of the fat people there. 

My metabolism sucks and I'm not going down the 3 year road of early weight loss and then all the fat roaring back. Age seems to be diminishing my appetite somewhat, but then the metabolism is probably dropping along with it.  I have to cook all the time to have anything edible.  Eating still remains a science project of "What will make me sick or not." Food seems more disgusting, I think with supply chain problems and more, even lightly processed foods have suffered from a quality drop. 

I'm on tetherhooks with my UU, Covid ruined my participation there, but since husband wants to stay and I am still going to some services and meetings on Zoom. I plan to garden again this year. Hopefully they will allow me the opportunity. Seeds were bought yesterday at the Dollar Store.

 I'm thinner under the fluids anyhow then people know. I got my new Flexitouch machine, it took over 10 months of paper work, phone calls, bugging doctors, but I got it.  I use it twice a day now, my legs have shrunk down, there's more fluids coming off.  This was something I put work into because I know I need the machine to stay alive. It stopped the endless leg infection gauntlet, I still get a rare one, but nothing like things were before where the infections were getting to the point they were destroying everything else.  

They will need to test my parathyroid, I've had parathyroid problems in the past, and with kidney stones and other problems, that's definitely something to look at. I'll see how it goes. I may discuss in-patient help and other options too for more loss. I'm wary of weight loss drugs I am on so many medications and one can cause thyroid problems but will see what's on board. 

One shock is I dug out more of my father's old medical records, I had gotten them trying to figure out what was wrong around 15 years ago. I plan to include a new set of them and give them to this doctor and kidney doctor because the latest careful reading, I was in shock to learn he had psorasis too, and well I knew about a connective tissues disorder and lupus, but this set of records says he had high uric acid. I hadn't realized that. Was his high uric acid from Lipedema too? Obviously this is another reason to see the endocrinologist, my extreme high uric acid.

 Another shock, is in this particular report, is he has hearing loss, hoarseness and dry eyes. The hearing loss, I simply didn't know about. It obviously wasn't as severe as my own. He has signs of Raynaulds--which I have too. His pericarditis is outlined too and the surgery he needed as a result of it. I am glad I have these records because if they ever try to mandate the clot shots, the family history of pericarditis and related disorders are in these reports. He also had severe hyperpigmentation where he grew very dark, that the doctors never diagnosed.  My father most likely had Lipedema which shows different in males. He had the darkened legs that go with Lipedema in males. 

I do wish my father had rethought having children. Yes I wouldn't have existed but maybe my soul would have gone to a more suitable body.  I do think what I could have done with a decent body, I had art and intellectual talents, that I could have taken further. I'm still trying to use these talents but the body is a pain in the ass. 

Nature elected for him not to have them, but treatment for hypogonadism, made it possible. I do have empathy for him, in that he was so sick, but sadly the household with my narcissistic mother, all pain and problems were to be hidden, and she put that pressure on him. He also had his own narcissism where showing weakness was verboten.  Keeping us kids clueless didn't allow any development of support or help from our end either.  I didn't even know he had lupus until I read these reports 15 years ago. We all knew he was sick but never had the whole picture. 

No one was allowed to be sick and you were supposed to work until you dropped. I think in this case this made for a very shortened life span. I think she pushed her second husband into an earlier grave though that one lived into his 80s from constant household projects, work and no rest time. I did like that guy, he was a narcissist to a point too but at least a jovial talkative one.

My father was disabled by his early to mid 40s even though his weight never got high as my own, he hit the mid 300s. Remember when I wrote about the seizures they hid, that are in these reports too? This kind of mode of life destroys things for children, in which you are not allowed to form any resilency or realize how hard life can get. Everything is about appearing perfect and health problems shoveled under the carpet. 

My pain has increased lately. I know the doctors want me on Planequil but being almost completely deaf I can't risk the harm to eyes. My father warned me as I have said never to go on it. It did stuff to his eyes. It's hard to walk and I am stiff and my joints and muscles are having problems. Yesterday I picked up something and my wrist hurt so bad, I dropped it. It's scary to be old and fat with "other health problems" that probably would knock the stuffing even out of a thin person. 

I've felt sick a lot lately, the fatigue has gotten bad, a lot of my life seems lived through a haze of sheer exhaustion and "pushing myself". I always feel overwhelmed which is not a good feeling to have, where you just even doing my medical duties seems tiring. My husband has been very helpful and has stepped up in keeping up with things but I worry for him too. Hopefully the doctors can help me more and figure out what is going on. 

My worries about declining health have been serious, I am working hard trying to stay out of the nursing home at this rate. A lot of women with stage 4 Lipo-lymphedema end up with very bad health problems. I've lost so many friends including another friend who was bedbound for 6 years. She was an online friend and we recently had grown more close. That was very hard too. So many have died so young.  I'm hoping I will be listened to. 

Update, this endocrinology office cancelled my appointment in October and gave me a date in March, and just now I went on my online medical chart to double check the time I was supposed to show up and they wrote me about 2 weeks ago and told me the appointment was cancelled and I needed to call them back claiming the doctor wasn't seeing people on Mondays anymore. I'll try and reschedule tomorrow.