~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.

Wednesday, September 23, 2015

middle of the night chronic spoonie lurker jackpot

Pix click out to other sites and sources. Some amusingly have nothing to do with what we're talking about.

I was very ill for about a year before I finally felt desperate enough to seek out medical help. I'd lost 75 pounds and hurt profusely all over, and felt like my spine was being microwaved, as if the spinal cord must have a fever. My first doctor was an ancient country doctor on the brink of retirement. My bloodwork inspired him to let me know I would be in a nursing home by 40, and that there was nothing that could be done. Then he prescribed the biggest jar of aspirin I ever saw in my life and told me to take it every day. About a couple of weeks into the aspirin I went through a full week of hallucinating and 'visions' and should probably have been in a hospital. I never went back to that doctor, and stopped the aspirin. I was in my mid 20s.

A few months after that I dragged myself into a city clinic and saw a real rheumatologist. He asked why I was there. I told him I thought I might have lupus. He asked me ten questions, and I said yes to all ten, including losing my hair, which was noticeable to my family. Without ordering a single blood test, he laughed and told me I don't look sick, and said I was skipping down a rosy little path to a psychiatric illness. I dragged back out to my car and sat there crying for almost an hour. Note- several years later, a doctor sent me back to that same rheumatologist who was now in an even bigger clinic, and after touching my rock hard shoulders exclaimed that I had the worst fibromayalgia he'd ever seen and demanded to know why I wasn't being treated for it.

I was too devastated to try again for another year, until I finally couldn't take it any more. It was a horrible time for single parents on medicaid, no clinic I called would take me. I finally drove back to the city to a clinic I hadn't called yet and dragged from office to office asking if someone could please see me. Finally, on the third floor, one doctor said yes and saw me that day.

From Fibromyalgia- University of Maryland Medical Center
"Fibromyalgia can be difficult to diagnose. It can take 5 years for the average person with the condition to finally get a diagnosis. As many as three out of every four people with fibromyalgia remain undiagnosed."
I was fast tracked to rheum and diagnosed within a week.

From Do I have lupus or fibromyalgia?- Fibromyalgia Information Foundation
"As many of the symptoms of fibromyalgia are similar to those experienced by lupus patients, there is a natural concern that the symptoms of a fibromyalgia flare could be the underlying lupus picking up steam. Ultimately, the treating physician has to make a call on these increased symptoms. In general, lupus patients who are undergoing a flare have other findings; such as evidence of true arthritis (usually with joint swelling), skin rashes, sores in their mouth, fever, hair fall or evidence of specific organ disease such as pleurisy or microscopic amounts of blood and protein in the urine. Furthermore, in active lupus, blood tests such as the sedimentation rate often become elevated, the white count (particularly the lymphocyte subset) becomes depressed and there is often an increase in the level of anti-DNA antibodies. None of these findings are a feature of fibromyalgia -- thus the distinction between a flare of fibromyalgia and a flare of lupus should not be too difficult if the problem is approached systematically."
I was also dx'd simultaneously and treated immediately for lupus based on positive ANA and high SEDs which refused to come down for several years even on meds. Medicaid wasn't paying for a new drug called Ansaid, so my doctor kept me on samples for five months. I credit him with saving my life. He also dx'd me with Hashimoto's (autoimmune thyroid) about a year later, based on radioactive iodine uptake.

My SEDs hovered between 75 and 100 for several years. I felt like my bones had been crushed and nothing touched the pain, but the Ansaid kept me functioning enough to work on my college degree.

In the years since, photosensitivity called polymorphic light eruption (PLE) was confirmed by a dermatologist, a liver condition called NASH was confirmed by an endocrinologist, and I underwent heart surgery at 38 to correct a rhythm problem that started in high school after I had measles, which I just lived with until it became unbearable. During my worst year I went through nerve fail which caused such severe dry eye (I still make only 3% moisture in one eye, confirmed by an opthamolagist) and dry mouth that I developed cavities all over my mouth. My dentist was thrilled when the moisture finally came back on, and I have had only one cavity in the years since.

I'm also positive for lyme, esptein-barr, bartonella, and CMV, plus I had the measles in high school. What doesn't kill you doesn't always make you stronger. Sometimes it makes you a puny sickie.

Why am I saying all this? Because I still have doctors asking Are you sure it's lupus? (Yeah, they're asking me.) I've never been hospitalized and managed to fake my way through 15 months on a desk job (my last job after years of more laborious jobs) without missing a day before I finally fell apart because when I was growing up, we never went to doctors. I grew up on a farm working like a dog since I was very young, pushing animals 4-8 times my size around regularly, and using my hands so hard that I'd developed carpal tunnel by the time I was in high school (recently confirmed as 'severe' by a neurologist). Then I went on to survive being thrown out of a car crash without any pain meds at all. After living with nasty trigeminal pain from damage for years, a neurologist finally dx'd me with trigeminal neuralgia.

I've come through a whole lot of thick and thin, have been through several epic health crashes, but what started turning it all around was 1- finally being dx'd with diabetes and changing my diet, and 2- slowly weaning off the handfuls of meds that kept me 'drunk' for years. AFTER THESE TWO THINGS, my liver tests finally went back into a normal range. I had elevated liver enzymes for two decades until I changed those two things. One year my liver was so sick that my doctor wanted to test me for autoimmune liver disease, but I felt too rotten to go through a long needle penetration. I still get symptoms once in awhile, so maybe I do, but it sucks so I avoid flaring it as much as possible.

Ever since I made these changes, which have taken several years (four years since the diet changes, seven years since I first started weaning off meds one by one under doctor supervision), my health has slowly but steadily improved. I have come back from being convinced death was close (using a cane and sometimes a transport chair and daily advair just to be able to breathe, and needing help dressing and bathing), to living a pretty normal life in my own home now. I still have mini flares, I still get SED spikes once in awhile, but for the most part nearly everything in my body is improving as I age after years of immobility and misery.

I still look around for tips and advice from other spoonies on rough weeks, and what I call my rough weeks are still spectacularly rough compared to non-spoonies, but to me now, they're a vast improvement over rough years.

I wrote this down in one place to give other people hope. There really is hope.

If you are a very sick and puny person and are still drinking soda pop and smoking cigarettes, you cannot get better until you stop that.

If you are a fatigued scatterbrain who enjoys a little too much pasta and dessert, you cannot get more energy until you stop that.

If you are overworked and eating salads and and torturing yourself to 'be healthy', you cannot feel healthy until you stop that. Get some real rest and more protein in your diet.

If you are buying extra makeup and putting more chemicals in your hair trying not to look bad, stop that and take a step back- do a real self assessment, prioritize some goals, make a PLAN, and spend the next 2-5 years implementing. It took you years to go to pot, it'll take a few years to come back from that.

I am a workaholic. I'm also an alcoholic (20 years dry now), a very heavy smoker (3 packs a day, 25 years off now), a codeine-benzo-caffeine addict (never cold turkey off benzos, guys, it sucks and it's dangerous, and guess how I know that), a chocoholic (a severe nut allergy popping up cures that real quick, read a few labels and laugh with me about how most of the chocolate in the world is processed in facilities also processing nuts), a sweets junkie (I'm an artist with decadent baking), ok you get the point. All that stuff piles up. And once you've overloaded, it takes years to undo damage to your immune system, your liver and kidneys, your eyes, even your brain. You can't take ginseng and improve your brain power and still do all this stuff.

There are people out there who do everything right and don't get better. Hugs to you guys, I've watched a few friends go down and I know it's really hard. There are other people out there who do everything wrong and live long lives without ever getting sick or cancer. High five on you guys, good on your magic DNA. Trade me bodies sometime. And don't gloat or feel better than other people because we all know it was the luck of the draw, and it's not like you got to pick your body before you were born.

It's not your fault. Yes, we have science and medicine now, yes, you know better than to be ingesting things and not exercising and whatnot, but just because we know this stuff doesn't mean it's your fault. 300 years ago, people died all the time and no one knew why (unless it was murder or some crazy accident). Now we know why, and basically it really is the luck of the draw- you are stuck with the DNA you were born with. Some people are prone to cancers, some prone to diabetes, some prone to autoimmune problems, whatever. You were born that way.

True story. My husband's granny lived to 102 with full blown diabetes. She avoided stuff that spiked her blood sugar. Her daughter (my husband's mother) eats bags of candy and to this day in her 80s remains completely free of diabetes. Eating sugar doesn't cause diabetes, but it will make you very sick if you have diabetes. My husband has been hovering on the brink of 'pre-diabetes' (that's such a joke, just call it what it is) for years because he's a hard worker and manages to keep his fasting glucose low enough to keep the doctor hesitating, even though he carb loads like crazy sometimes. When he does that, his heart races, and we know there is some damage going on at the cellular level, but he thinks he can get away with cheating. He's never yet been treated and he doesn't count carbs, he just works really hard.

On the other hand, I come from everyone going diabetic on my mom's side, lots of strokes and vascular disease kind of stuff, and she didn't make it to 70. I watched diabetes destroy her. She suddenly started wasting away and I thought she had cancer. She said she never felt better in her life. I don't know if that was true, because I also know her feet started going numb, and it took her months to recover properly after a simple gall bladder surgery.

I was going down way faster than my mom. Way faster. Now I'm doing much better at this age than she did. Way better.

I just want to let you guys know there really is hope, but you are the one who has to decide whether to make it possible. Whatever your diagnosis, whether they're missing something or not, even if it feels dire, you can make decisions that change how you feel down the road. Where do you want to be in five years? Make a list. Fewer headaches, maybe. Heartburn gone for good. Bladder control. Less brain fog. A little more energy. You might surprise yourself if you make a decision and stick to it. Just 5 years ago I was using a motor cart to buy groceries. Now I trot all over Walmart.

Little steps over several years add up to really big changes.

latex, latex all around


Assessed out of PT 3 days early because progress on referral area has been so fantastic.

Unfortunate accidental latex exposure while I was there. (Stretchy band stuff, touched by someone who'd had their hands all over them.) Thank goodness for the extra benadryl and emergency pred stash I carry around in my epi-purse, because...

First time I was ever turned away during allergic response from an open clinic that had an urgent care sign because they purportedly had no provider in the building and didn't even offer triage. Wound up driving 20 miles over to another urgent care. Hey, this is how we roll in the Ozarks. By the way, first hour self treating (thank goodness for experience) is kinda tense in stupid traffic.

Traffic ironies galore- the one day I need speed and smooth sailing is the day I can't turn left against a funeral with 40 cars going by, the day I get caught behind two tar trucks bottlenecking a major highway, the day I wind up behind a very loaded tree trimmer navigating a busy intersection during a lunch rush, and then wind up behind the most careful older person in a big luxury car ever slowing down to 20 mph on a street there's no way I can pass on. If airway had blown up, even 9-1-1 would've taken forever to get to me, sooooo glad I carry pred everywhere I go.

It all starts innocently enough, people don't think about something they touch transferring to everything else they touch and then handing things off to people, like printouts with notes all over them. Then all it takes is a little itch around my nose and mouth during one of the biggest histamine months of the year (ragweed and cottonwood) to rub latex dust on my face because I didn't wash my hands after PT (using alcohol doesn't 'kill' latex, it's not a germ), and the next couple of hours turn into lip and tongue puffing up, roof of my mouth puffing up, barely being able to swallow even just a drink of water much less the cheese stick I brought for lunch (choked solid on a cheese stick), and my chest feeling like it's super taped up and I can't get a breath in properly.

I'd already had zyrtec with my breakfast, but that barely even keeps ragweed reaction under control. I took benadryl before I went into PT because I always take benadryl going into buildings around other people, just in case. I took more benadryl over the first reaction hour once I noticed it happening, only so much benadryl you can take. Got the pred down and spent another ridiculous hour getting myself to medical assistance just in case.

So this week I'm on my second pred burst in 3 months over latex, hafta spend my week avoiding carbs and glucose testing all day long, is it any wonder I'm a hermit and hate leaving my house.

The following links click to more very useful information. Please visit these sites if you think you might have problems with latex.

Latex allergy advice- Australasian Society of Clinical Immunology and Allergy
"No treatments are yet available to cure natural rubber latex allergy. The best 'treatment' is to avoid exposure to latex. Medications are available to temporarily alleviate symptoms... You need to avoid all latex products. The biggest risk comes from contact with rubber gloves, not just in the medical or dental setting. Balloons, household gloves, gardening gloves, many adhesives and condoms can cause a severe reaction if you use them.

Please tell your doctor or dentist about your 'latex allergic status' when asked about 'drug allergy'. Remember to inform anyone else likely to perform a procedure on you (even your hairdresser!). Wear a 'medic alert' disc and carry a letter of explanation from your allergy specialist.
Have a first aid kit available. Epipen is a safe and easy form of self injectable adrenaline, but remember to keep a check on the expiry date."

Latex allergy- Mayo Clinic
Note- "Latex allergy also is related to certain foods, such as avocados, bananas, chestnuts, kiwis and passion fruits. These foods contain some of the same allergens found in latex. If you're allergic to latex, you have a greater chance of also being allergic to these foods."

Cross Reactive Food- American Latex Allergy Association
"Degree of Association or Prevalence

High (4)
Banana, Avocado, Chestnut, Kiwi

Moderate (7)
Apple, Carrot, Celery, Papaya, Potato, Tomato, Melons"

In the waiting room- whoever designed this carpeting is a genius. The fibers are woven so that it all just looks smudged, everything I thought could be a puke or blood stain turned out to be a trick of the eyes the way they haphazardly staggered the blue through everything, almost like the entire carpet was going through pixel fail. I was pretty fascinated with it.

Friday, September 4, 2015

needle day

My turn for needle day. This week so far I've watched two friends on twitter/facebook go through big neck stuff (awesome needle in the ol' spine pic *thumbs up*), so mine is little tiny stuff by comparison. However, instead of turning pain OFF, we'll be doing a nerve conduction study and turning pain ON. I have no idea if we'll be doing both legs or just one, the goal being to discover exactly why I get the stabbing pains in my left foot for weeks after I trigger my L5S1 compression by lifting Bunny from any position, both sitting and standing.

Detection of lumbosacral nerve root compression with a novel composite nerve conduction measurement.
"This preliminary study suggests that a novel composite nerve conduction measurement, based on F-wave latency parameters, may be highly effective at detecting magnetic resonance imaging-confirmed lumbosacral nerve root compression. Because these measurements provide objective evidence of functional nerve root compromise and are noninvasive, they may be of diagnostic value to clinicians evaluating patients presenting with low back and leg pain."

Can EMG/Nerve tests diffferentiate between cord compression and nerve root compression???
"The EMG's can isolate if it is a root or the cord. The cord most times would be a bilateral affect, where as a root of course only one side."

I'm planning on taking it easy for a few days afterward since fibro is a nerve condition.
more pain since EMG and Nerve conduction
"I had pain after the EMG and swear I still feel the 2" needle probe they were trying to get in my shin. I'm sorry to hear you're having pain still. I've tried massage blocking the signals and it's seem to have helped. Please call your Neurologist to follow up. I wish I could help more. Thinking of you. Take care. Charry"

I'm married to a guy who faints dead away just giving blood and swears he'd rather die than go any further than that with a needle because he'd go into convulsions or something. While I'm not actually looking forward to it, I've come to realize after so many years of pain that I kind of like it. That realization was a little disturbing at first, wasn't sure how to feel about that since I purposely and very conscientiously avoid self harming. I've noticed during deep tissue work weeks in physical therapy that I sometimes come away almost too delirious to drive because I'm so high right after my pain threshold has been lowered, which is weird since I don't medicate, but I discovered how natural spinal opioids and receptors work, so I imagine that's it in a nutshell. I tend not to notice 'real' pain, where I really have a broken bone or someone points out that I'm bleeding, because I'm so overwhelmed all the time with what I call 'ghost' pain. (Pain charts are ridiculous contraptions for those of us with pain syndromes.)

I've been through nerve conduction studies before on my arms, they suck, and I'm sure I'll be pretty pissy for awhile after I've had needles in my legs and feet pinging nerves on purpose. Anyone who has never had deep throbbing nerve pain hasn't LIVED. You cannot comprehend how absolutely beautiful life is with a lower pain level until you've been tortured on purpose for a medical study.

I'm not a pain advocate. I don't think it's wise to self harm, especially with MRSA and VRSA and other big germ baddies on the loose all around us, and much more prevalent than most people realize. HIV is nothing compared to those.

By the way, if thoughts of torturing someone for science excites you, there's a career field for that.

:edit: Imagine the SpongeBob narrator saying "Two hours later."

So far, so good. No mutating into an alien life form, nothing disturbing the Force, just a great baseline for if/when any of the pain changes/gets worse. They can only do so much with "We don't see any damage."

So for all I know, that nasty weird nerve pain might never have been a problem for someone without a fibro feedback loop amping up to Zaphod Beeblebrox levels of weirdness. I'm not bitter, though. Some people wanna see returns on their suffering, they want proof, and I'm all HELL no, do ~*not*~ give me proof. I don't care who says what about it's all in my mind (that's a real thing that is finally turning into Oh yeah, now we can see part of what's causing the feedback probs in fibro research). I'd much rather no one believe me and think I'm a hypochondriac wanting negative attention to feed my psychosis than have real, actual damage. Besides, this is standardized across the board testing for a very specific determination, not a validation of whether something actually happened.

Some people go deep into rock aura magnetic energy stuff, others go into pandimensional reasons for our sufferings that involve quantum physics and dark matter (srsly, not kidding), I'm just all Tell me how I'm moving wrong and I'll take it from there. Because that's a real thing that can be corrected. I think the greatest change we can make in health care is for insurance to pay for weekly massages for everyone.

This was on the wall there. I thought it was pretty clever.