#i have a rheumatologist appointment in. november

[little-eye-guy]

ulcer update:

things have been going pretty well. my psoriasis has mostly cleared up, and the ulcers haven't been giving me too much trouble overall. i've been able to sleep on my sides more consistently. that weird gas problem i was having seems to be mostly gone...?

mostly rn i'm just worried that i'll be out of meds for a while again in a few weeks, depending on how things shake out. i'd like to get back to work soon but that concern has me. concerned. you understand

[mozukumi]

Having a medical appointment on November 6th is so weird. It's like damn. The election results will be coming in, but likely will be inconclusive. I will be in deep fear. But also I get to see a rheumatologist that's fun :-)

[bvnnniie]

i have a doctor’s appointment with a rheumatologist on the first of november !! i’m so nervous about it because it’s my first time i get see one where i’m not in a hospital bed / trying to get discharged as soon as possible

i don’t really know what to expect !? but i’m hoping i can get off some of the medication they gave me since my little hospital trip 😔‼️

i’ve got soo many questions that’ll hopefully get answered too which is always fun ! not so how i feel about driving out to santa monica though, it’s certainly a drive 😵‍💫

[awheckery]

so. uh.

cut for frank discussion of chronic illness and the serious failures of the american healthcare system. tw for fatphobia and gaslighting.

Last July, I got sick. It wasn’t too bad at first: some fatigue, body aches and a slightly elevated temp, until suddenly it was bad and I wound up in the ER. It took three rounds of steroids, a round of antibiotics and a more powerful inhaler to get my feet back under me, but I never fully recovered.

I didn’t talk about it here, except for answering an ask in October and blaming my lack of creative output on depression. It really, really wasn’t depression; it was my health progressively collapsing, one system after another until the avalanche of symptoms that flattened me just after New Year’s.

For the last four months, I’ve spiked a fever over 100°F nearly every single day. My joints hurt. My knuckles are knobbly and swollen, and occasionally my fingers are so painful and weak I’ve had to literally tape my pen to my hand at work. I get rashes at random that itch so badly I claw myself bloody. I overheat and have hot flashes in temperate rooms. The skin on my face and neck and shoulders turns red and hot to the touch, like I’m burning for hours with no immediately discernible provocation.

Some days, I wake up and I don’t have the strength to get out of bed. Some days I can’t wake up at all. I’ve slept through deafening alarms for hours, long enough for my phone battery to run out and die. I can only stand up for ten minutes a day without being hobbled by the effort, and every extra minute beyond that I pay for in hours spent bedbound by exhaustion and pain.

I keep losing words. I’ll arrive at the middle of a sentence and stumble to a halt, because the word I need isn’t there. It’s not true aphasia, and it’s not all the time. I comprehend written and verbal communication perfectly well, but I can’t get my own thoughts out without tripping over them.

I am, to quote a friend attending school to be a nurse practitioner, “a textbook case for SLE,” and I agree, but somehow I can’t pay a doctor to treat me seriously.

In January, I was referred to a rheumatologist after the bloodwork my PCP ordered indicated I had autoimmune activity of some kind.

To date, that’s my only test for anything that’s come out definitively positive for any kind of disease state at all. Ever. I tested negative for celiac disease on a technicality nine years ago, despite how specifically and intensely sick gluten makes me, so I was dismayed but not too surprised when follow-up bloodwork for lupus came back just barely inside the range of “normal.” Despite that, I wasn’t prepared to be jerked around as much as I have been.

The first rheumatologist I saw, back at the end of January, had barely been in the exam room for thirty seconds when I could see he’d already made up his mind about me. He was dismissive and perfunctory and condescending when he told me that “plenty of perfectly healthy people have positive ANA results,” and he referred me back to my PCP for an exercise program and antidepressants to treat my “fibromyalgia.”

Putting aside that I’m not a “perfectly healthy person,” I’m a Fat Lady living in America, and I’ve experienced medical fatphobia for decades at this point. You learn the key words and phrases pretty quickly, and “exercise program” has never not been a euphemism for “weight loss.” (Which is heavily ironic in this particular situation, because before I was Fat, I walked 2-3 miles a day for funsies and spent 15-20 hours in the gym every week. I only stopped because I somehow shredded both my ACLs in one summer. I’d love to get back to that if a rheumatologist could help me figure out how to be active and uninjured at the same time.)

I was frustrated after that first appointment, enough to request a referral to one of the best teaching hospitals in the country. Why not go to the best, right? There was a five month wait for an appointment, but I am stubborn, and I made use of the time by documenting every bullshit symptom my body threw at me. I have a daily symptom journal, full of subjective entries like my pain and fatigue levels, as well as objective entries like daily temperature changes and photos of my rashes and my burning face and my goddamn mouth ulcers.

I thought I had enough logged to be impossible to ignore, and then I saw the second rheumatologist three weeks ago, and the first sentence out of her mouth was the beginning of an interrogation on my blood pressure, and whether I was taking medication or if I was on a fucking exercise program for it. I tried to get the appointment back on track by sharing my symptom diary, and she turned back to my just-under-the-wire test results, and told me, “many healthy people have positive ANA results, it doesn’t mean anything without other positive test results for specific conditions.”

I said, “Healthy people don’t run a fever for months.”

And then she told me that a "fever is not associated with any of the conditions a rheumatologist treats." I was so startled by the confidence and authority with which she stated the lie that I was unable to speak to rouse a defense or contribute anything else for the rest of the appointment. After an insultingly brief examination, in which I never took my face mask off and she declined to look at any of my photos, she said that she “didn’t see anything that could be rheumatologically wrong with me.”

I asked her what she thought could be wrong with me, and she grudgingly admitted it’s possible, though rare to have an autoimmune disease and test negative for everything, so she would order more tests and refer me to appropriate specialists for my various symptoms. She ordered a referral to an infectious disease specialist for my fevers, and a referral to a dermatologist for my “rosacea” (that she’s assuming I have, because I would like to again note she did not see it, at no point did she actually look at my face or a photo of it), and a referral to an ENT for a salivary gland biopsy for my dry mouth, and a referral to a neurologist for my “stroke-like” memory and speech problems.

It was, all told, an unbearably shitty appointment. I cried in my car for an hour in the hospital parking garage so I wouldn’t do anything impulsive like lying down in traffic, and then I went home, cried some more, and went to bed for three days.

On the fourth day, I woke up enraged. It’s one thing to be blown off by a doctor when you’re just reporting symptoms without proof, it’s a wholly different thing for a doctor to ignore your proof and lie about diagnostic criteria to your face.

It’s hard enough not to think you’re crazy when your test results come back negative over and over; it’s that much harder after being told that your major concrete measurable symptom is diagnostically irrelevant, when it really, really isn’t.

(for the record, just going off the symptoms I can concretely prove I’ve experienced in the last week alone, I land a 16 on this chart, which is the most up-to-date, widely agreed-upon diagnostic criteria)

I have decided, for the moment, to play ball. I don’t have the energy to jump through all the hoops this rheumatologist wants, but I'm angry enough to drag myself through them. Tomorrow I’m supposed to see the infectious diseases specialist. On Wednesday I see the dermatologist. In two weeks I see the ENT, and I’ve got a neurology appointment tentatively scheduled for December.

I’m going to be blisteringly forthright with all of these doctors about why I’m there, and that I’m looking to exclude diagnoses other than the lupus I pretty obviously have. (Except with the ENT. Apparently they treat allergies, and I’d like to be able to go outside long enough to walk a dog, someday.)

I’m supposed to see this rheumatologist again at the end of November. Depending on how this week’s appointments go, I’m aiming to either move up my appointment with her when one becomes available, or just send a firm yet diplomatic email asking why the diagnostic criteria apply to everyone but me.

If anybody else has gotten through this fucking nightmare successfully, I’m open to suggestions, it’s not like it can get worse at this point.

[wrenfea]

hey! is it ok to ask a wheelchair related question? i am in PT and have muscle atrophy n hyper mobility and nother things (no disorder specified) and I’m told to do these exercises and “it’s good to move when ur in pain and fatigued.” and that it’ll make it better .. but it’s hard to manage and id like to go through daily life not in pain and be able to do more things. i want a mobility aid .. I kinda think maybe a wheelchair would be best bc both of my legs and arms and back are effected.. but I know I’d be told I’m “giving up” and that I will atrophy more… n what I’m thinking is well what if I keep doing these exercises and doing walks but in my daily life also use a wheelchair or mobility aid? would I still atrophy then?.. what happens if u completely atrophy?.. idk it’s just like. when should I use a wheelchair vs not do that and keep doing the exercises to strengthen myself ? idk like when should I allow myself a wheelchair ?

I am not a medical professional so please take my advice with a grain of salt. Also my advice comes from my own personal experience with fibromyalgia, I do not have hyper-mobility, but I do know people that do.

I was in a pretty similar position last year in PT. Everyone kept telling me to keep moving, to push myself to get stronger even though it hurt. I tried, I really did, and it did help for a bit. However once November hit, everything went back to the way it was. Before November I was able to run around in the heat with only minor symptoms as long as I could take breaks. But once November hit I could barely move. So I had to make a choice. Stay in bed and join class virtually, losing the amazing experience of my program at SCBI, or find a way to cope with my situation.

Anon, when I told my rheumatologist, she laughed at me. It's like she wasn't even listening. A 15 minute appointment. I didn't even straight up ask for a wheelchair, I just brought up the possibility of exploring mobility aids as an option. She said I was too young. My therapist? She kept saying it was a terrible idea because it would cause muscular atrophy. This is a lady with no experience with fibromyalgia other than "one of her other clients has it". I decided to stop listening to those who kept giving me advice without actually listening to me and not actually having any experience with my disability (hell, my therapist kept saying I shouldn't call myself disabled as that would be giving up).

I started looking on forums for people with fibromyalgia (stuffthatworks is AMAZING) and was connected with people who have had my disorder for decades. I reached out to someone who was able to give me advice on mobility aids from the perspective of someone with fibromyalgia that had been using mobility aids for years.

I'm not saying doctors don't know anything, but many doctors stick to what they are taught rather than doing their own research or actually listening to their patients. It took a while but I finally have doctors who listen to me. Who actually check up and make sure their treatments are working. Who accepted that they didn't know what to do and would refer me to another doctor instead of throwing medicine at me.

If you aren't actually diagnosed yet, I would be wary about PT. How are they supposed to treat you in a way that won't exacerbate your condition if they don't even know what you have?

Here's my advice, do your own research. Try to find a specialist that deals with your specific issues. For me, I reached out to a spine and pain doctor who referred me to a neurologist. I got an MRI, an EEG, and a sleep study. They found out I had sleep apnea which I had no idea I had. I also went to a chiropractor who did x-rays and I found out my neck is literally backwards. Like I have mild scoliosis. I do PT with the chiropractor which is so much nicer because I use methods that don't cause pain. Everything is so gradual and personalized. Meanwhile my old PT place had me going up and down stairs because I told them I hated stairs. I can actually freaking move my neck side to side now.

Once you have a diagnosis, try to find a community forum for people with your condition. Heck if you already have a pretty good idea you can look at those forums now. Stuffthatworks has multiple communities for different health conditions.

Now about the mobility aids. Honestly? Fuck the whole atrophy thing. Think of it this way, will you really be moving more with it or without it? Without the wheelchair I go out less and stay in bed more, which causes atrophy!! With the wheelchair, I go out more, use my arms and core (manual wheelchair only tho), and have more energy to actually do the exercises my doctor prescribed. It helps me save energy for the things that matter. Wouldn't it be better for me to use my wheelchair to get to class and then do my PT exercises than to suffer through walking to class unaided and then sleep the rest of the day? Do what increases YOUR standard of living. If you can get a wheelchair or other mobility aid, go for it.

There's a reddit forum for wheelchair users that I've found useful for first timers. Also please note it can be next to impossible to get a wheelchair prescription ESPECIALLY as a young person. I would look on Craigslist or charities near you that provide wheelchairs. I got mine off Craigslist for $80 for a $500 wheelchair. For others I was able to find a rollator at goodwill for $40. They also had crutches but I didn't buy those. You can also find canes pretty much everywhere. It's good to have different levels of mobility aids for different levels of pain.

For the atrophy thing specifically, I used a wheelchair in highschool (broken ankle that would not heal) and did notice my legs atrophied a bit. But as long as you monitor your muscle weakness and do exercises that strengthen your muscles along with using the wheelchair, you should probably be fine. I have a rollator so I can take walks and get my legs moving while also still having a place to sit if needed. Also, working with a physical therapist that actually knows about your condition and accepts that sometimes you need to use your mobility device will help. You'll most likely find that it will actually become easier to do your physical therapy exercises once you stop wasting energy on simply getting about.

Sorry this is kinda long, I hope it helps. Let me know if you have any other questions or want me to elaborate on something. Also if anyone who sees this has more advice feel free to add on!

[novustrad]

Hi! I was just curious what your journey with rheumatoid arthritis has been like. I am being referred to a rheumatologist after having a positive ANA and high inflammation markers and my GP is positive it is RA. What was diagnosis like for you? How long did it take? What treatment options have you tried? Would you say that it’s worse now than in the very beginning or better? I’m just trying to understand what I’m in for and there isn’t a lot of anecdotal stuff that’s not months or years old that I can find. I’d love to hear about your journey, I really enjoy reading your posts about RA. Also, please don’t feel pressured to answer any of my questions! I know it can be taxing! Hope you have a lovely day/night! 🖤

Hi there!

I wasn’t too sure my posts where ever very helpful, but if they’ve helped you then I’m happy!

Edit: Just to be clear, this is based on my experience with HSCNI (Health and Social Care Northern Ireland (basically NHS))

I’m gonna take this a question at a time.

*

What was diagnosis like for you?

Honestly? It was a surprise to me. I don’t know if I tagged my first posts, but essentially how it went was:

I was twisting bank statements to burn in our fire and that must have triggered the first pain flare in my knuckles. When I let that pass it moved to my index finger, then my middle finger and I just couldn’t use my hand at that point. I googled the symptoms, but I ruled out rheumatoid arthritis because I didn’t match with the symptom lists I found.

Long story shortish, I was told I needed bloods done. Mine came with high inflammation markers and “a specialised blood test” came back high too. I assume that was an ANA?

So I had to get an x-ray and was referred to rheumatology.

So. In July I think. I had my appointment with the rheumatology clinic and that’s when they said that the results are a strong indicator that I’m prone to rheumatoid arthritis flares like the one that started everything.

I can’t remember most of what he asked tbh. He used one of those ultrasound type machines to take a look at my knuckles and we discussed treatment options.

In the end, we agreed that immunosuppressants at this stage might be overkill because there was a chance I’d never experience another flare. But he said if I did then I should call my GP. Then he said he’d see me in a follow up appointment and that was that.

Until I started experiencing flares a month or more later.

How long did it take?

If I remember right:

May: Symptoms started.

Late May: My drs appointment and first bloods.

Early to mid June: Follow up bloods and referrals. X ray.

Early July: Rheumatology clinic.

I’m going to say I started getting more flares around September time, but honestly I can’t quite remember.

Late November: I saw an occupational therapist who talked me through things like exercises for my hands; assistive devices to help with dressing, cooking and bathing; how to preserve my joints and made a resting hand splint with this thermal stuff that was heated in water and molded to my hand. (A link to their video on Correct Hand Posture)

My follow up rheumatology appointment was to be by phone at the end of January 2022 but it’s been cancelled until they get back to me

What treatment options have you tried?

Mostly trial and error with compression gloves, wrist supports, ice packs and pain meds and anti-inflammatories. I got prednisolone (corticosteroid immunosuppressant) for three weeks (just until I got to talk to rheumatology) which did wonders for my hands. I can’t mind the dosage, I just remember that the starting dose of three tablets helped the most. I still felt fatigue but not quite as bad as without it.

Would you say that it’s worse now than in the very beginning or better?

It certainly looked to steadily be getting worse. I went from nothing to flares at least once a week in a matter of months. I want to blame it on the colder weather but I’m not so sure, honestly. I want to say that medications made it better but I didn’t have enough time to compare.

*

Hope this helped. I tried to be concise with the details so hopefully this makes sense!

Have a good night/day!

[fatwheeliebabe]

My rheumatologist wants me to see a cardiologist, and a nephrologist to make sure I’m not having heart failure and that my kidneys are alright. Apparently if I’m not having any heart problems, I’ll be put back on Humira.  The nephrologist was booking out into MARCH OF 2022. I made the appointment in JUNE for MARCH OF NEXT YEAR. I’ve had hematuria for 4 years. Last November I passed a kidney stone. I passed another one in March of this year.  I’ve got a homogenous ANA titer pattern, and all of the symptoms of Lupus besides the butterfly rash on my face, and I’ve been asking that they treat me as if I have lupus for ages and I’m gonna be so fucking mad if my kidneys are fucked up and that’s what makes them go “Oh you DO have SLE.”  I’ve been working at getting properly diagnosed for literally 12 years. Since I was 22, and my back started being messed up and I was told that it was just a herniated disc that was pinching my sciatic nerve. Turns out that I have psoriatic arthritis that has been attacking my joints this entire time.  why is it impossible to get medical professionals to actually listen to you and your symptoms and take them seriously? Especially as a fat person. 

[mischiefmanifold]

Yo, I've found myself on your blog and you seem cool.

How have you been? I hope good.

I was wondering if you had any special interests/hyperfixations you wanted to share? Or anything that has happened recently that made you happy or excited?

Probably for me, I can only really think of seeing one of my friends, having a chocolate milkshake, and starting MHA.

A lot of not good things have been happening around the world and sometimes we just need to take a second to remember the things we love.

So, tell me all about something that's made you happy recently! 😀

Hi, anon!!

Thank you for the ask, it made me smile.

I'm doing alright, as well as I can be considering the snow and ice in Texas right now.

Something that I'm looking forward to is my rheumatologist appointment on Monday. It's been rescheduled a few times, so hopefully it holds up and I can figure out what's up with my body. I'm also looking forward to choosing my schedule for next year (I'll be a junior in high school, or 11th grade).

That chocolate milkshake sounds so good, oh my gosh. Once all the covid stuff calms down, I want to take my significant other out for a date, because we haven't seen each other since November.

Thank you again for sending your ask!! I hope you're doing well.

[elfpuddle]

It’s been a hot minute since I shared, so I’ll take a moment now to do it. I don’t know how to do the “read under the cut”, so I apologize for the huge block of text appearing on your dash. For those of you who are new, a little context: Instead of dealing with a pandemic, hording, and whatever else was going on last year, I was busily going from doctor to doctor trying to learn why my body suddenly had such severe edema that my feet were actually ovals (as one example...the edema was full body), why I suddenly had such intense foot pain that I could not stand without feeling like I was being tortured, and more. From April to July, I was bed ridden, trying to keep my feet above my heart. I left the bed to walk six feet back and forth to the bathroom, a trip that took 30 minutes because of the pain, and to go to doctor appointments. We discovered that I have hyperparathyroidism, causing hypercalcemia, causing gout-like pain in my feet. I have a full team of doctors working on me, and had scheduled surgery twice last November and December. Both were canceled--the second because my parathyroid and calcium levels were too good; the surgical team had no measure to judge when to stop the surgery.

Since then, I’ve added another doctor, a podiatrist, to the team, because the foot pain simply wasn’t getting better the way my blood levels said it should, and the feet/calf edema was still persistent.

My podiatrist had given me a prescription for a topical arthritis ointment for my feet. It took a few days, but I developed a really "lovely" coating of hives. Yes, I stopped using it and added another drug to my list of allergies. My doctors and I decided that coping with the anxiety and depression caused by the hyperparathyroidism wasn't good enough any more. I'm now taking Prozac, and am much the better for it. I've slept better in since then than I have in over a year, and am much more my normal self. (My dreams are really super odd and vivid, but I'm getting used to my sleeping brain on drugs. I don't actually recommend that part, but I'll deal with it since the rest is so much better.) The xrays of my feet showed that some of my bones to be nearly transparent. Not in the ghost-like way of all xrays...actually not enough bone where bones should be. There was enough calcium in my veins that some of them showed up in the xray. This really disturbed the podiatrist, who ordered a bone density scan and an MRI. Also concerning was the way my left calf, ankle, and heel bones were jammed so tightly together that they overlapped.

My bone density scan technician, for reasons I cannot quite comprehend, didn't scan my feet, which are the area of prime concern. In good news, the rest of me is normal, so my parathyroid isn't extracting calcium from everywhere, nor do I have osteoporosis (yet?). My MRI was much more informative. I have a page and a half of information that, in a nutshell, means that my talus and calcaneus (ankle bones) have bruises and microfractures. I have plantar fasciitis with no tear, two heel spurs, mild/moderate arthritis in my feet, and most likely sinus tarsi syndrome shown by the complete loss of fat cushion in the tarsal sinus (hollow of ankle bones). In sum, for those of you like me that are not experts in the area, my parathyroid has been eating the calcium out of my feet and ankle bones. This, combined with arthritis in the feet and the swelling of the band of tissue that runs along the bottom of my feet, helping connect toes to heel, caused itty bitty fractures in the heel. In addition, it caused the tissues that are supposed to cushion the bones from scraping against each other to compress, deteriorate, and otherwise go away. All the feet and ankle swelling I've had hasn't been fluid building up, but a combination of feet tissues being pushed out of where they should be and swelling from the things that are broken and hurting (much like a jammed or broken finger will swell up until it heals). The cushion rearranging is why I've been so unsteady on uneven ground and steps; my ankle doesn't quite have the ability to deal with anything other than a perfectly flat surface. Usually, one would increase their vitamin d and calcium to help the body fix itself and get the nutrients that have left. But my hyperparathyroidism is causing hypercalcemia, both making too much calcium and depleting my body of it at the same time. Adding more isn't going to help as much as it should. I’m adding a bit more vitamin D to my drug schedule, and some vitamin C. My rheumatologist would add even more of both if it were possible, as the two of them will help rebuild collagen, which is the major ingredient in my missing tissues. I’m also continuing to wear compression socks, but increasing the pressure, to support feet and ankles and make sure that the swelling is minimized. (Like wrapping that jammed finger.) I’ve got a new pair of shoes that have a “rocker bottom” (be careful googling that) like a walking cast, so that my feet and ankle bones stop jamming together when I walk. The shoes have the most arch support I’ve ever seen. I've also got a list of exercises to do for the plantar fascitis to strengthen those tissues and keep them from getting too stiff from the swelling. While the parathyroid is causing havoc, there isn't a lot else to do other than monitor the situation. Unless I show symptoms of getting worse instead of holding steady or getting better, I next have my parathyroid and calcium levels checked in early July. There's three ways it could go: 1) Everything gets better and my body heals. That's not likely, but I do believe in miracles. 2) Everything stays the same...levels slightly elevated, but so close to "normal" that I'm not a candidate for surgery. 3) Levels get high enough, and I get sick enough, that surgery is necessary. I've been bouncing back and forth among the three for a year, so that's not really news. In good news, HubbyTMC and I both got the second doses of our Pfizer Covid vaccines. He was tired and achy in that "I'm coming down with something but don't really have a fever or anything specific" sort of way for a few days. I was hit by a nap rather suddenly a few hours after my shot. That exhaustion lasted for less than 24 hours, and otherwise I had no reaction whatsoever. Huzzah! I have my spiffy new rockerbottomarchsupportarthritisandeverythingelsegoingonsupport shoes. I wear them everywhere and they are helping. They also make me feel even taller than normal, since I'm wearing shoes while HubbyTMC isn't. And without them, I’m a hair under 6′, so this is a fun development. Yesterday, for the first time in a year, I got to go to Mass. I hugged my village of friends. I hung out at their house, just like I did every Sunday before my body went to hell. My village (the two of us, and three other married couples and their ten living children, as well as all the members of the Church Triumphant who hang with us, including our miscarried children) got to go to lunch after Mass and be together as the family we are. GoddaughterHufflePunk took solicitous care of me. She’s Six-and-A-Half, so I got to sit at the border of the adult side of the table, and the children’s side of the table, which is where I belong. My spiritual and emotional health is on the path to healing. Thank God for vaccines and all the people who got them to me. This has been a hard year for a lot of you, too, in ways different than my problems, but just as soul crushing. Know that I'm praying for all of you, and hoping that you are finding light at the end of your tunnels.  Thank you for your continued prayers. I know that they are helping. 

[creativetona]

The start of a treatment plan:

Hi Lupies,

Cheers to a simple, uncomplicated blog to document my days. The days where I’m creative, the days where I’m singing all day long, the days where I just want to release all my creative energy..and the days where my chronic illness just knocks the life out of me. 

I want to document how art brings me to life.

This past month I decided to really get on the ball with my health, I want to do all things I always say I want to do. So I’m putting that little voice that fills me with doubt....in a box and I’m throwing it overboard. I’m done-this is the only body I get. So I want to make it as strong as I could.

When you have a chronic condition like me, at a very young age doctors began to tell me these horrible things that might happen to me as my Lupus would progress & that fear....kept me away from doctors for a while... But I’m about to be 30....

And in a couple of years maybe some babies too.

So I’m at my gynecologist now. Let’s see what this ultra sound says...this is my second appointment at this office. Doctor is bright, insightful & made me feel in good hands. This is just one of the 4 Referrals Ive received so far: 

-obgyn

-rheumatologist

-Orthopedic

-Pain Management Specialist

This is the timeline & how I made my decision to become healthy again.

March: lockdown, start of the pandemic.

Shortly after the announcement of what was happening in the world. I remember I was with my gfs on our last time out drinking. We came back to my apartment & I had a panic attack.

Because it suddenly dawned on me...the world was infected & the one thing we all need right now is strong immune systems...with Lupus that is what our bodies lack.

June: Locked down at home, painting and singing to fight the anxiety. It was as if the world was falling apart but I felt safe in my little home safe bubble. I never left home & my love would come over to bring me food, medicines etc.

Aug: knowing I haven’t had insurance in a while, I had been researching the types of insurances available so I was ready during the November Open Enrollment to make my choice.

November:Signed up, relieved since I received a tax credit qualifying me for an insurance that I wouldn’t normally be able to afford. This was when I began to feel hope. I’d been ignoring this fear of getting sick...not that I was being reckless. I was being careful but the fear of dying a sudden death if I caught COVID sat heavily on my mind. I finally started to feel that pressure gently rise off my shoulders.

December: Insurance Chosen, it becomes active January 1st.

Now between Jan & Mar I began to make appointments & we all know the medical system by now....it sometimes takes weeks to months. They don’t care how serious you are, get in line & don’t die before your appointment. You better have insurance info because they won’t even look at you without them INSURING their payment.

Now fast forward to today, I’ve seen the following doctors.

1. Primary care , 3 times: (Gave me all the referrals & confirmed my lupus was still active)

2.Orthopedic: (for a degenerated L5 disc in my spine & spinal stenosis) this along with my usual Lupus pain, is brutal.

3. Gynocologist: PCOS (Polycystic Ovarian Syndrome) painful af girls. They want to put me on birth control, but I don’t want to treat it with a pill that will treat it but bring me problems getting pregnant in the future, lets see what the options are. I was once on a low estrogen pill, for the least amount of side effects.

4. Rheumatologist: this is the type of doctor that Treats my lupus, this appointment however was the one that didn’t have any openings until the end of March. I’ll see them in about two weeks so they’ll explain to me where I stand in my Lupus diagnosis. Pray Y’all.

If you are like me and are thinking about getting healthy again, and you are overwhelmed. I’m in the same shoes my love. I’ll be sharing the steps I’m taking in the hopes to motivate you. ❤️

We don’t have anything if we don’t have our health.

Oxox,

CreativeCona

[medsmoney-blog]

There are some services available online that take in long lists of symptoms, roll them all together, and spit out a diagnosis that makes sense. Basically, it does what all of your doctors should do - pulling everything together and then treating your ILLNESS, rather than your SYMPTOMS. Crazy idea, right?

I’ve been struggling as my husband and son’s birthdays are three days apart and that meant wearing real clothes and jewelry and blow drying my hair and leaving the house. Insanity!

So, I ran symptoms through three of these services and all three said I have a 90+% chance of having fybromyalgia. In other words, I have the thing they said I had in 2016 and then changed it and changed it again and then narrowed appointments down to:

“How are you feeling?”

“Still like death warmed up.”

“Okay, well, we’ll see you in three months. Go get some blood drawn that will tell us nothing we don’t know, but which will cost you money.

“That’ll be your $35 co-pay.”

So, based on this electronic, unanimous diagnosis I have made an appointment with a different Rheumatologist and I still plan to see the endocrinologist in November.

What changed?

The breadth of the symptoms has been expanded. Research has progressed tremendously.

2% of all Americans have fibromyalgia. That may not sound like much, but it’s over 2m people.

[darkanddirtyknb]

ACCOUNT INFORMATION

an update and a couple of questions...

Hey loves! I'm going to be throwing a lot at you so please bear with me but I have a lot of important things to note in this update and I'm going to need your help. First and foremost, to address what has been the number one question and concern I've been asked lately—that would of course be the recent news about Tumblr and what they're going to be doing with this blog. So far, I haven't received any messages or emails flagging my blog but with what some people are being flagged for, I'm far from convinced that this blog is safe. That being said, I'm not shutting it down and I'm going to hope that it's able to stay up. I have all of my stories backed up so nothing will be lost regardless. Now, for what I'd like from you guys. A lot of different avenues have been tossed around regarding where people are going from here. I've head a lot of people saying they're going to switch to Pillowfort and Dreamwidth. I'm a bit skeptical to go on A03 but I'll do it for you guys. However, I want to hear your suggestions—let me know which platform you'd like me to go to so you can still read my works. I might not post as much as I used to but I'll be damned if I give up now after I've worked so hard to keep going.

For the second part of this I want to talk about something that I've been mulling over for a while. I don't have all of the details worked out yet but I wanted to get your thoughts and takes on it before I really hammered everything out. But before I get into the details, I want to fill you in on a couple of things first. As you know, I'm unable to work due to my health ailments as of right now and I am not on any kind of assistance so funds are really tight. The only income I have is the money I earn from commissions. With all of my medications and monthly living expenses I can't even say that I'm making it—I'm just dealing with whatever comes at me because I don't have a choice. My grandma willed me her car and it's just sitting in my parent's driveway because I can't afford to get the title transferred and I most definitely can't afford the monthly fee it'll take to keep it insured. I have to rely on my family to get me to all of my appointments and I hate that I have to burden them with it all the time but I've had to sell every car I've ever owned because I can't afford to maintain them. I spoke to someone today about seeing an autonomic specialist and somehow, by some miracle, they will see me—which is great news but I can't be seen until November 7th of next year. Obviously that won't help me right now. I had an appointment with my rheumatologist several days ago and she prescribed me two new medications. The one I can get over-the-counter for $30-$60 dollars. The other one, my insurance won't cover. It's a compound medication and the only one in its class so it's costly and it makes things really limited for me. You can't even get this medication at regular pharmacies. It has to be sent to your home. It's $100 for a 90-day prescription. I don't know how I'm supposed to afford that when I can't even make ends meet now—but my doctor seems to feel that it will really help me. If I do have some kind of autonomic disorder, depending on what it is, if I don't start treating it my time here could be limited. It doesn't have to be and I'm by no means saying that I'm dying but there is a chance that if things are more severe than what we currently know, it could lead to some really bad things for me. That being said, what I want to talk to you about is an idea that struck me the other day. I would still like to write commissions for anyone who wants one and most of what I do now wouldn't change. However, I would like to try and get three people to “sign up” for recurring commissions. What I mean by this is, I would write a 2k-3k story for you every month and you would pay $20-$30 each month at a designated time. We would work out the due dates for both parties and it would be kind of like a monthly subscription. I know some people are going to wonder why I'm not just setting up a Patreon but I would like to do this my own way without outside commitments. Of course, you could discuss changes with me at any time and opt-out if you no longer want to be a part of it. Like I said, I haven't drawn up any details yet but I wanted to know what kind of response I would get before I took the time out to do so. As stated previously, I would like to keep this particular option down to around three people to start so I'm still able to write for others. It would just make for more solid income for me. If you have any thoughts or ideas, or anything you'd like to suggest I do in regards to this, please reach out to me. If you'd be interested, I'd like to know. Nothing will be started now. This is just so I can get a feel for what options I have. If you have any questions, please message me!

As for the blog, please let me know what you want me to do. Whatever platform ends up being the most requested is probably where I'll go. If you want to follow me on Twitter so you can stay in touch with me I'm @burnintothewick. If you want to talk to me about commissions or you don't have a Twitter, my email is skinflowersandwolfteeth@gmail.com. I'm sorry if this has been all over the place but I'm trying to get everything out into this message before I forget what I want to say. Thanks for your love and support, as always. Love, Kai!

[treewithabark]

**personal textpost**

I finally had a colonoscopy this afternoon (what an experience lol) to find out what’s been going on with my body. I’ve had a rough few months dealing with continuous pain, bloating, intestinal bleeding, fatigue etc and have had symptoms on and off for at least a year and a half. Thought it was gonna be Crohn’s, turns out I actually have Colitis and it should be easier to manage at this point in time as I caught it early! So relieved to have a diagnosis now, we had to push heavily for it as I was almost lost in the system and could still be waiting for answers for another few months if my family hadn’t been pushing for appointments etc. (The hospital legit forgot to book an appointment after cancelling on me back in November lmao) I’m starting a new medication tomorrow which has worked really well with another family member with the same condition, and when I talk to my Rheumatologist I should be able to start taking immune surpressants for my joint inflammation too, which in turn helps with IBD!! Hopefully it’s gonna put me in a good place and I’ll be working full time, going to the gym, and taking Hana to training sessions again!!

Sorry I know this is not dog related but I’m so happy to finally have answers and support. I’ve tried to stay so positive throughout everything even when it took a toll on my mental health on top of all the physical

[lifeasazebra]

My Story

I have never known what it is like to not be in pain. It wasn’t until I was adult did I find out that it is not normal to feel pain everyday. Since I was born, I struggled with health issues. I had GI issues and severe allergies as a baby. As a young child, I was painfully thin and struggled with constant swollen joints, flat feet with overpronation causing swollen ankles, chest pain, chronic severe pain, shortness of breath, migraines, muscle spasms, early onset osteoarthritis, intermittent scoliosis, nausea, and vomiting. I was also freakishly flexible. I was poked and prodded by multiple doctors, but in the end they all chalked my mysterious symptoms to growing pains and deemed it would all be something that I would grow out of. Not only did I not grow out of it, my symptoms worsened as I got older. Little did I know I would end up with multiple rare diagnoses...a Zebra...and end up ultimately fighting for my life. 

As a child, I always would have swollen joints especially with my ankles and knees. I was double jointed and super flexible...I noticed more so than my peers. I was always in pain everyday and I struggled to put on weight. I would also have severe allergies and would break out in hives and odd itchy rashes. I always had GI issues that would present intermittently. It was not until I was pregnant with my 4th child and had been confined to a wheelchair because the inflammation and pain was so bad in my SI joints did my perinatologist first utter the words Ehlers-Danlos Syndrome. It literally had rendered me unable to walk. I had to get corticosteroid injections just to be able to walk again. It was this first time a specialist brought up the idea that he thought I had Ehlers-Danlos Syndrome. I was referred to a Neurologist and then a Rheumatologist. They did an evaluation and after ruling out other types, deemed that I had type 3...the hypermobile type. I also see a geneticist as well who specializes in EDS. I was relieved to finally have an answer for all my odd symptoms and the multiple dislocations/subluxations I had on a daily basis that I have to see a chiropractor weekly due to this. Little did I know that another rare and insidious condition was wreaking havoc inside my body. 

I had been suffering with abdonimal pain, nausea, vomiting, abdominal distention, early satiety with meals, and vomiting up partially digested food many hours later. Sometimes, it didn’t digest at all. I was diagnosed with microcytic anemia that would not resolve with any kind of iron therapy. I was found to be deficient in multiple vitamins as well. They thought it was my gallbladder and removed it 2 weeks after the birth of my 4th child. My symptoms persisted. At first it was still intermittent, but starting at the end of November, it began to be a more consistent pattern. The worst of it began about a week before the New Year. I began to vomit everyday. Often it would be in the middle of the night accompanied by drenching night sweats. Then it would begin to happen soon after any meals I tried to eat or even after drinking Ensure or Pedialyte. I soon began to lose weight fast. I made an appointment with my PCP who sent me for a CT scan on my abdomen/pelvis with contrast. My results came back abnormal, but my PCP suspected gastroparesis. There was also a small mass found in my stomach. I was referred to a specialist who took a look at my CT scans. 

When he came in, he was very serious and stated “I don’t think you have gastroparesis. I think you have something even more rare called SMA Syndrome. SMA stands for Superior Mesenteric Artery Syndrome. It is where the duodenum becomes obstructed by being crushed between the abdominal aorta and the superior mesenteric artery. It is a potentially life threatening condition if not treated quickly. I have lost 25 lbs. It was good that I was overweight to begin with as it has given me more time to have this corrected. At this time I am awaiting scheduling for an enodscopy and UGI with small intestine follow through. He also said they might do an MRI as well. I was informed that I will need surgery for this. 

Two rare conditions and counting. I am also being evaluated for MCAS in April and POTS in March. Life as a Zebra sure has its challenges. However, I am a fighter. I am strong. I will not quit the fight. Zebra Strong!

[umflowers]

in november of 2020 my hands randomly started hurting so badly i cried every day. i couldn’t bend my fingers, i couldn’t use them, i couldn’t live. going to the bathroom was legitimate torture, let alone cooking fresh, healthy food, having sex, doing my laundry. i’m not only 33, i’m morbidly obese. i knew the fight i was in for. i begged to get x-rays and bloodwork. i immediately asked about a rheumatologist. i mentioned to my doctor in passing, not connecting any dots at the time, that the dry skin on my hands was out of control and burning and itching. “well i don’t think we need to send you to a rheumatologist yet.” the x-rays came back clean. i got sent to an occupational therapist. must be tendonitis. occupational therapist does heat therapy, very short-term relief that never stuck. says nah, must be rheumatoid arthritis that’s just not showing on the x-rays yet. let’s do bloodwork. rheumatic factor and sed rate comes back normal. huh. doctors kind of leaning toward just letting it go??? please send me to a rheumatologist? can i have pain meds? no? okay, i’ll just keep sobbing til i’m dry heaving. the pain’s radiating up my forearms and into my elbow btw. “look, rheumatology’s gonna refuse you cuz you have fibromyalgia.” try? please? “fine, but i’ll send you a referral for orthopedics cuz they’re way booked out at rheumatology” orthopedist looks at my hands, runs his fingers over the dry skin while asking about which joints hurt worst. “have they sent you to rheumatology yet? also let’s do bloodwork for lupus. and i’m sending you to a neurologist.” lupus? “i can get you in with [other healthcare system]’s rheumatologist next week. you need to be seen.” as i’m walking out and he’s talking to a nurse, “i think she has lupus” lupus? “hello, mrs [last name]. does your scalp itch a lot?” wait. “yes?” i left that day with a diagnosis. psoriatic arthritis. let’s start weekly methotrexate injections and the neurologist will find out if you have carpal tunnel. by the way? you don’t have lupus. the orthopedist gave me nighttime braces for my carpal tunnel. it’s been 3 months on methotrexate. some days are stiffer than others, but my laundry’s clean and my food’s tasty. i shouldn’t have had to fight, claw, and scratch. i shouldn’t have had to pay hundreds in copays for appointments with specialists i didn’t need. i cried in pain every day, and couldn’t use my hands, for a year. i’m now more overweight. i stress ate because i was in pain and exhausted and felt hopeless. no, we don’t fucking like being in pain. we are in pain and we want treatment. don’t even get me started on how i had severely deformed legs from primary lymphedema for 12 fucking years before a doctor who knew about it sent me to a lymphedema therapist to learn mld and get compression stockings.

exactly.

[cathair-inmy-quesadilla]

I had an endochronolgy appointment today cuz I'm unnaturally cold and my family has a history of thyroid disease and that's an issue. Last spring I had blood work done for the same issue. My vitamin d was low but they didn't test my ft4 or tsh(important hormones). I has blood work done again in November and my ft4 was low like my moms after she had me(when her issues started. I'm basically a carbon copy if her anyway). I've has this appointment for 3 months now and its only gotten worse. At roller derby last night I could only do warmups and 2 drills before my feet and ankles started cramping to the point the burn and spasmed and i couldn't put my skates back on. My ankles still hurt and its been over a day. The doctor was very knowledgeable and gave us a clear plan ahead. She said that my ft4 could have just been low that day since my tsh was normal. She did blood work again today. I think this is the one time in my life I've wanted my blood work to be worse than 3 months ago. If my tsh and ft4 are normal, I'm going to have to go to a rheumatologist and do tests for autoimmune diseases. If my tsh is normal but my ft4 is low then I'll have to have a brain mri to see if there's a cyst or tumor or something around my pituitary gland. I just want answers. I want to be able to go to sleep in the winter without three pairs of socks. I'm absolutely terrified of mri machines and ive seen what autoimmune stuff does to someone. My sister can barely regulate her body temperature and is terriefied to eat certain foods. Ive seen how it messes up people's brains. I just wanna be okay. Ive been visably stress out since she mentioned an MRI. Ive been tryong not to cry all afternoon. I just don't know what to do.