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~secret code stuff~

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Currently (2020) my most updated blog is pinkfeldspar.

Spaz is a useful side blog for sorting other stuff out.

Tuesday, October 1, 2019

what the hell, just throw it out there

I think I came back to this last summer... Not done yet, probably won't finish, not even sure now what the point was, but I kinda feel better now, lol.

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Started working on this about a year ago. Before we go on, I'd like to note that I'm not nearly so miserable as ten and even five years ago. Untangling all this information over time has been extremely beneficial to my overall health, and I believe that it's important to understand our chronic states in order to live well or at least better with them. That being said, it's been a rough ride...

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I've had the opportunity to talk to quite a few people privately over the years about the emotional challenge of getting a new diagnosis, the impact it has on the psyche, both subjectively and objectively, and the difficulties that come up attempting to discuss these feelings with friends and family who have never received a similar diagnosis themselves.

Part of the overload is all the new information itself, finding and studying all the sources (medication information in particular is daunting), and then running into 'bad day dumps' in medical forums that can scare the living daylights out of a person.

Since I'm so experienced with 3 decades of diagnoses acclimation under my belt, I am in a fairly good position to share quick takes on how these jolts affect communication between subjective patient and objective family and friends. Right off the bat, even if we're not really alone, no one can cross that very personal bridge of raw experience with us in our heads, and it's hard to understand how supportive people react adversely while they're feeling frustrated or overwhelmed themselves.

My mess started out very complicated and took years to untangle, and more years of trudging doggedly through searches for better treatment. It wasn't until I created my own medical team and my own self care plan that I began to see positive change, and I had very little emotional support doing it. Blogging has helped fill that void, and also helps me filter words through the emotions so I can more easily share what needs sharing with my family and friends. In my experience, bravely holding back the tears while attempting lengthy explanations is a mistake. Keep it simple, let the stabs of emotional pain bring a tear while you talk, and you will hopefully get that breakthrough to the empathy you need.

💗

Since I've had 30+ years to acclimate and basically talk about one or two things at a time, and since several people have let me know how comfortable they feel talking with me about all their own scary stuffs, I probably need to create a context area with ALL MY STUFF in one place. One of the ways I've survived is by looking at the whole body holistically. Every system in the body affects all other systems, every limb and organ affects all other limbs and organs, every brainwave and experience affects- you get the idea. Basically, freaking out makes everything seem monumentally worse and there isn't much you can do about that part except stay busy and distracted until your adrenaline surge filters back out.

These are my official noted health issues with occasional links to information, and my own comments with relevance to the anxiety many people feel with each diagnosis.

Underactive thyroid, dx'd in late 20s. When I hear people say "I don't want to have to take a pill the rest of my life" and they seem very upset about the idea that they could 'die' if they don't live like that, please allow me to reassure you that taking a thyroid pill for the last 3 decades has saved me so many other more complicated health issues if I had decided not to live my life taking that pill every day. My thyroid crashed one year to the point of serious lethargy, intense joint pain and brain fog, and failing health when one doctor in particular failed to monitor or send me to a specialist when asked. You absolutely cannot get better in any other capacity, be it mental or physical, unless your thyroid problem is carefully compensated, and that alone will help you solve all the rest much faster. When thyroid fails, all else fails, point blank. When in doubt, check TSH first, even for mental states. All that being said, I understand how difficult it can be to get a primary to send you to endocrinologist. You can see from my own test results graph what a difficult time I had with one particular primary for awhile. This graph goes back to 2008, which I have blogged about before being the year I finally put together my own health plan and care team and started talking to my doctors about health goals, with my psychologist helping me learn better communication with my doctors. Even then it was three years before I got real help from a much better primary who listened and followed through on my requests to see specialists.




Irritable bowel syndrome. I spent ten years across my 20s and 30s with severe abdominal cramping and urgent bathroom needs, to the point of getting out of jury duty 3 times. This was well documented with tests galore. In the end, very long story short, that all changed and WENT AWAY when I stopped eating potatoes and anything with flour in it. Turns out I apparently have a terrible time digesting starches and overloads of simple sugars, and my body carried on like I was poisoned every time I ate cookies, pie, cake, rice, tempura, cereals, giant loaded potatoes, potatoes and gravy, etc. I blamed it on everything else for years. Guess what, I'm still eating all the raw veg and fried food I want just fine without a problem. All I had to do was eliminate refined flours and sugars, and no more suffering. AT ALL. In the meantime, whatever is triggering yours is extremely disruptive, and I know it's crazy scary thinking about the horrors of being so young with a colostomy bag. I assumed I'd wind up like that, so it was a real surprise when I didn't. I'm finding out this is not that uncommon for young people, nowadays likely winding up with a Crohn's diagnosis, and it's debilitating in so many ways, not to mention utterly embarrassing. My body finally just had enough and I started having hard and fast airway problem reactions to foods to the point where I was forced to strip my diet down and do the slow add back, keeping a food diary, and starting over again every new time it happened. I can confidently point to cashews (and related nuts), all citrus, and definitely wheat in all forms (not just gluten) as being my arch enemies. Once I purged my house of all these (all were separate very scary incidents) and stopped 'carbing out' in general, my IBS ceased to exist. My life is sooo much better now. I haven't had regular bread or pasta since 2014, and that did more to lift severe brain fog than any other change I made in my life. And I say this as an ex smoker and drinker, too. Wheat and sugar was my nightmare, and every bit as addicting as narcotics and alcohol, in my opinion. I wish you all the best if you decide to purge these evils from your life, as well.

Fibromyalgia, dx'd so fast in my 20s that heads spun because it was so bad. They checked me for *everything* and have watched me for MS for years. Fibro sucks, and I went through every conceivable bah humbug from family and doctors galore for years. Know what? It's a confirmed nerve system disorder now. Mine is so bad that I have to go through regular fascia shredding all over my body just to be able to self care around my house. This is an extremely depressing diagnosis to get, and you have my permission to enjoy visualizing punching people out who give you crap about it. Btw, I have the costochondritis kind, which is continually mistaken for heart attacks, pleurisy, one doctor even thought I was describing a broken rib. This has greatly impacted many other diagnoses and treatment until I finally just figured it out myself. Not one doctor has ever offered me treatment or relief for fibromyalgia of the chest wall, and no one I know understands what a drag it is to say I have chest pain and immediately be flung into ER for 6 hours just to rule out heart attack and pulmonary embolism. Fibro flares are very costly, and I finally just stopped saying I have pain anywhere around my chest, even when it's brutal. I would compare the pain to being kicked in the breastbone rib cartilage area by a horse. The depression that comes with it is just as brutal, so I keep myself very distracted and focused on enjoying a game server or a TV show or puttering around my house while I'm in flare up, which can last days to weeks. I've learned not to expect so much and then kick myself for fail. That's a very silly way to live in one's head, and a very hard habit to break, but if you think back to how that all got started, maybe some kind of guilt thing growing up that turned into a self punishment cycle, you realize life is too short to stay on that hamster wheel. Life sucks enough without beating yourself up, and unfortunately, fibromyalgia has been associated with perfectionists. That's a big load of tension right there. I have a reputation for powering through, and physical therapists have showed me how I actually harm myself doing that. Learning not to power through was hard, it's a very bad habit to ignore or dismiss oneself as not worth stopping something for. You are worth more than that! I decided that being called lazy at certain points of my life and me powering through to prove people wrong was a really stupid troll trick to fall for. Pooey on them, this is my life, they can eat worms, right. Nowadays I dismiss the trolling and find ways to enjoy slowing down.

High blood pressure disorder, late 20s. Complicated, but it's gotta be genetic and related to undiagnosed diabetes and a whole load of other poorly treated problems. I was medically dismissed horribly for my blood pressure for 2 decades before a good doctor finally got me onto a safer treatment. If you've never experienced your heart feeling like it's exploding out of your chest for a week on the wrong medication, you have no idea what fear with every single breath really is. There have been months on apparently the wrong med or wrong dose where I've had to pull out of heavy traffic so I could get out of my car on the side of the road because my blood pressure spiking up and down was so intense that I couldn't just sit and drive. It got labeled as anxiety disorder, naturally. That stopped when I finally got put on beta blocker. Every time my doctor tries to migrate me off beta blocker to another med, I go through that all over again.

Headache. One of the vaguest notes in my entire medical history. My worst headache was 6 weeks long and was so awful that the most sleep I got at once the entire time was 2 hours or less. I was blown off with 'migraines' until a genuine viral illness on top of real preexisting nerve damage was confirmed. My headaches didn't lighten up (and even stop!) until I went through aggressive deep tissue ASTYM therapy on the back of my skull and my neck. They said the fibrotic scar tissue was the thickest they'd ever seen, likely from a nasty whiplash I got being ejected from a flipping car.

High cholesterol. The funniest part of that diagnosis is that changing my diet up there completely solved that one. Who knew refined flour and sugar jerks your cholesterol around worse than fats. Why isn't this common knowledge? And yet it's true.

Malaise and fatigue. I can't even begin with this one, just if someone says they're tired, stop pushing them to keep up. THEY ARE TIRED. Something is wrong and pushing them only makes it worse. You can't will yourself into higher energy when systems fail is going on somewhere. And once that hits, my brain falls out and I'm nearly nonfunctional. This has improved markedly with controlling my diabetes and years of physical therapy for pain.

Autism spectrum. I was both relieved to find out I fit into a subset of normal and crushed to learn that I was missing a vital function component that I had to work extra super hard learning to make up for in order to be accepted as a human being. I like me, I'm ok with me, but apparently I am viewed as something broken and a very real percent of the human population would like to see people like me wiped off the face of this planet. Welcome to the human race, I guess. Geez, guys. I seriously cannot bring this diagnosis up with ANYONE without being reminded that I'm using it as an excuse to behave poorly, even if the other person is behaving worse than I am. Basically, my meltdown is against some kind of social law, but 'normal' meltdowns from people all around me are ok. From my point of view, if others had to self monitor like I do, none of us would be having meltdowns at all.

Pain disorder with psychological factors. Because depression makes everything hurt more, obviously. Funny this isn't equated with the fibro and autism being tied together in the same nervous system, maybe throw in some lyme and epstein barr for kicks because life isn't hard enough already without real causes while people are telling me I create my own 'pain'.

Acid reflux disease. Yeah, mine actually got pretty serious, and, again, it ALL went away with that diet change I keep bringing up.

Nasal inflammation due to allergen. Took years to even get that documented. I wound up doing ambulance rides with nebulizers before that was taken seriously enough to get noted. My entire airway was on fire through most of April in 2011, no sign of infection or other malady.

Other benign neoplasm of connective and other soft tissue of lower limb, including hip. That is a coding thing for billing purposes, and I think it was related to the uterine ablation I wound up getting.

Abnormal sensation. Absolutely maddening notation. My entire face and head were going numb and they did special tests making sure the blood vessels in my head weren't going thru an autoimmune flare. That was intensely scary and not one soul in my family had a clue. I'm just a weirdo with a numb head. I cried when I was alone, and I was extremely relieved that wasn't the cause. After a few years of intense physical therapies slowly nailing down causes for referred sensations, that one is turning out to be nerve damage repair over time. I was so used to unremitting pain that numbness in its placed terrified the hell out of me. Four years later, we're actually mapping out areas getting sensations back versus still numb areas, my entire back is like a patchwork quilt of numb areas when I literally cannot feel someone touching me.

Uterine fibroid. Lol, was that the benign neoplasm?

Mood problem. That's a nice way of saying that several doctors have locked horns over whether I'm actually hardcore bipolar or not, but years of all the rest of everything wrong with me kind of cushioned this one for me. Like, who even cares, right? But if I want to stay off the hell of pain meds, which masks the mood problem, then I had to learn to monitor the mood problem. Took a couple of years to realize it's a very definite real and separate issue that I actually did need help with. This kind of diagnosis on its own without anything else around it is extremely soul crushing to many people, the idea that you're mentally ill and broken and can't retain control over your cognitive states from one minute to another, and to reach out for help and not get what you need from people who are supposed to care about you is devastating. This diagnosis alone is rife with self medicating complications, social interaction problems, self defeating behaviors galore, and if you truly want to survive a mood problem, you've got to find a way to make friends with yourself, because it really is like Jekyll and Hyde. If you can't find a way to depend on your own self somehow, you have to go on head meds, you have to check in and be monitored, and that is humiliating enough without all the severe depression from the sabotage with comes with the mood swings. Mood problem is a very intense diagnosis to find peace with.

Trigeminal neuralgia pain, also known as the suicide disease. I lived with this for decades before it finally got diagnosed. In spite of all the other problems listed above this one, I'M STILL HERE.

Seasonal allergic reaction. This has resulted in several blood and skin test sessions, and two trips to pulmonology because 'reactive airway' went anaphylactic a few times. There's absolutely nothing wrong. I'm of the opinion, after many long years of this, that my body is so wired to freak out that it reacts on general principle if I don't force it to stay calmed down with round the clock antihistamines, and starting to reach consensus with psychologist that my fight or flight through child trauma likely got stuck as my default through adulthood, so I'm working through understanding and applying psychoneuroimmunology. Basically, a stressful childhood and first marriage set the stage for a wrecked adulthood.

Bilateral carpal tunnel syndrome, March 2016. Oddly, one side responded very well to therapy and avoided surgery, the other did not, but thank goodness for the surgery. I got at least 60% recovery and a huge reduction in pain.

Severe obesity (BMI 35.0-39.9) with comorbidity, July 2016. You know, I never took this that seriously until I really started looking at aging problems. I'm doing my best now to not make my BMI worse simply so I can retain as much capability as possible before I'm stuck with assistance again.

Family history of ovarian cancer, August 2016. (This is just a note. I have never had cancer.)
BRCA negative, October 2016. (That was to make sure my family genetics wouldn't be a factor in cancer later.)

Sleep apnea, October 2016. I love my CPAP. I know some people really fight with theirs, but after decades of severe sleep disorder, I am loving sleeping. Mine seems to be more central apnea than regular, but it's still making a huge difference.

Abdominal pain, pit of stomach, October 2017.
Abnormal CT scan, October 2017.
Gall bladder inflammation (noted during removal), November 2017. I so wish I had done that sooner...

Fever, February 2018. ??? This was during a 'common cold' stint that became famous around here as the 2-week cold.
Chest congestion, February 2018.

Plantar fascial fibromatosis
 of left foot, March 2018. Not the same as plantar fasciiitis and considered uncommon.
Heel spur (right foot), March 2018. Seriously, my feet hurt bad all the time.

Right knee pain. Arthroscopy to remove bone chip and clean up arthritis. Another one of those wish I'd done this years ago things. I was literally crippled in that knee, now I'm not.

Ear pain. This is one of those late comer notations, because many years of ear pain was never documented before. I'm sure this one will be ongoing, but in the meantime, several trips to ENT are only confirming normal aging and not addressing the pain. I suspect it's related to the trigeminal neuralgia or another cranial nerve. My ears have felt like ice picks are stabbing them for years, to the point where I can't tell whether I have ravaging ear infections. It's all the same to me. Imagine spending your life feeling like you have ravaging ear infections with no relief.

Primary osteoarthritis of right foot. This was only recently noted, but it's bad enough that I could opt for surgery at any time. Podiatrist said keep my feet in high quality athletic shoes and put off surgery as long as possible. He says foot surgery is the most difficult to recover from and the worst for infection.
Diabetes with neurologic complications, related to neuralgia in my feet.

The following list is a separate part of my health record, I guess an at-a-glance health history page.
Allergy
Fibromyalgia
Cytomegalovirus Infection
Autoimmune Disease fibromyalgia
Disorder Of Thyroid Gland
Irritable Bowel Syndrome
Headache
High Blood Pressure Disorder
Underactive Thyroid
Lupus
Joint Pain
Liver Disease cytomegolvirus
Allergy To Latex
Sleep Apnea 10/19/2016
History Of Abnormal Cervical Papanicolaou Smear
Personal History Of Other Diseases Of The Female Genital Tract
Personal History Presenting Hazards To Health
Post-operative Nausea And Vomiting
Motion Sickness
Back Injury
Neck Injury
Chest Pain
Diabetic Nerve Disorder 2011
Disorder Of Muscle
Migraines
Diabetes
Personal Notes About My Medical History
Notes entered here will not be viewable by your doctor.

Ablation Sup
Endometrial 7/16/2013
Hysteroscopy 7/16/2013
Colonoscopy, 10/7/2016
Upper Gi End 11/7/2017
Lap,cholecys 11/14/2017
Hx Cholecystectomy