Chronic Pain – Navelgazing Writer

Fat Girl Stories: Cyber-ly Abled

So when I watched Avatar and saw Jake, unable to walk and in a wheelchair, take on a Na’vi body that allowed him to not only walk, but even run, I felt pangs of jealousy.

“In Real Life” Reality

I have not been able to walk very far for several years. After the Gastric Bypass in 2001, I lost lots of weight (which I have gained most of back), but also any calcium I took in wasn’t absorbed and now I have osteoporosis.

I have broken my feet (both) two times from trying to walk to lose weight and again last year falling up some stairs. I have broken my left foot requiring 3 surgeries after falling off a Wii Fit board, also trying to lose weight. Ironically, I fell over a balance scale in 1995 and broke my right ankle and that required 2 surgeries to repair and left me unable to walk but to the bathroom for almost 3 years. I am quite accustomed to the post-surgical boots now.

(And no, losing weight will not fix it. It could make them hurt less, but trying to lose weight when you cannot exercise is a distinct challenge. Even swimming, I have cracked a bone in the top of my foot.)

I have been counseled several times to get an electric wheelchair, but have balked. Now with the new #NotMyPresident coming into power, I might have lost my window for getting one with insurance paying. Instead, I use a walker when I have to walk somewhere (therapist’s or doctor’s office, for example) or an electric cart if they have one (Target, Costco, etc.). I no longer walk in the mall, Disney World, concerts or go anywhere I have to walk further than about 4 minutes and when I do, I go very slow to preserve my bones.

Virtual Reality

Virtual Reality is used for a variety of rehabilitative purposes, including with autism and others who need help acclimating after an injury that changes the person’s abilities. It is used with spinal cord injuries to teach folks how to move and even walk again.

Even so, there are detractors, saying:

Some people also worry that steady exposure to virtual reality could alter the way people perceive the real world. Concerns have also been raised about the effects of people mostly communicating with others online. But on the other hand the internet and VR-enhanced communications can also be a great way of bringing people around the world closer together and enable disabled people with restricted mobility and independence, to interact with a wider network of people.

The thing is, I am not playing with Virtual Reality, but am creating my own Scenes, scenarios, storylines and community online through my writing. But yes, I know being online has increased my interactions with others… absolutely.

Cyber-Reality

When I am online, which is a lot, I am freed from those pesky real life limitations of being fat and physically disabled. I am able to walk miles, run through (metaphoric) meadows and do all the things I ache to do in real life that will never happen again. I feel like Jake; freed from the constraints of my flesh and (brittle) boned body.

I cannot go out for coffee or have delicious sex as much as I desire because of my physical restrictions. Online, my life is robust and I would say almost completely satisfying. I miss my kids and grandbabies and miss going to Disney World (and those are enormous things to miss), but other than that, I am pretty content where I am behind the screen. I never want to be in a face-to-face lover relationship again; my virtual ones are amazing and I embrace them fully.

I love being able to have unencumbered sex with my friends, relieved of the logistics that real life would dictate.

It is in these beautiful places that I do, most assuredly, feel cyber-ly abled.

ER Visit for Abdominal Pain

10/10/16

I am a plethora of fucked up shit right now. The Bipolar Mania and my abdominal pain is getting worse. I went to the ER last night where everyone was as loving and respectful as possible. Oddly, two men I complimented on their bow ties, came and hugged me, both saying, “You’re beautiful!” That never happens.

Get Thee to the Hospital Already!

I’ve known I have gallstones for over a year, but the gallbladder wasn’t hurting me so I haven’t had to deal with it. However, I’ve been having increasing right upper abdominal pain for months, thinking it was a hernia (incisional). I also considered the gallbladder, but it didn’t fit the typical gallbladder attack.

Then the Mania hit and all of my body’s pain vanished. I didn’t realize it was gone until I started taking the Risperdal and the dips down from the highs brought back the intense pain I live with every day.

Symptoms

Off & on again fever (highest 103.5)
Sweating profusely (not related to Blood Glucoses)
Diarrhea that 20 Immodiums a day and Pancreatic Enzymes don’t quell (so no bowel obstruction)
Upper right abdominal pain that radiates through my back, which then changes to a knitting needle feeling (the pain has no rhyme or reason… independent of food choices… making this Atypical Gallbladder pain
When the spasms hit, Pain Level is a 6

I am really good at using Dr. Google and self-diagnosing, but I had run out of ideas for matching my pain to a cause, so trekked off to the hospital.

Prelim Work

Because I know hospitals are wary of people with pain, thinking they are drug seekers, I am clear with each care provider overseeing me that I am 2.5 years clean from opiates and do not want them. They visibly relax, relieved they don’t have to figure out how to have That Opiate Discussion. I use Mindfulness Meditation for my pain relief and did my best with it the past week.

They took me right in and, during my vitals, we see my Heart Rate is 118… double what it should be. Noted. I was taken right to a room, meeting a lovely nurse who got the IV in my fat, fat arm’s one-vein-I-have on the first try. Then the Nurse-Practitioner came in with two students (she didn’t ask permission to have them in there, but I couldn’t have cared less at the moment… and I always let students watch anyway). I was delighted to see an NP and she thanked me for that, most saying, “Where’s the doctor?!”

Quickly, I was given Toradol, which didn’t do squat, and then Zofran (for nausea), which helped a little more. Then I was wheeled down to get a CT, a fat girl wheelchair that held my body comfortably.

I was in tons (laughing about the word “ton,” seeing it in editing) of pain at that time (the pain coming in waves like contractions). The tech helped me onto the narrow table.

Contrast Pleasure

The scan had contrast, which I have grown to enjoy. I used to cry when they said I needed it, but now…. shudder of pleasure

I teach others how to enjoy it as well.

You see, when the dye goes through the IV and into the body, it makes a searing beeline for the groin. More specifically for me, my clit. (Men say it goes to their testicles.)

You know, when some people get it, they uh- they start to- well, they get an orgasm. Can you believe that?

While I don’t orgasm, I have learned to, quite literally, lie back and enjoy the short ride.

I even overlook the nasty iodine taste in my mouth. Too much of a hot party going on down south.

When the procedure was done, the sweet tech and the wheelchair pusher-guy helped lift me to sitting, grabbing the sheet behind me and pulling. I was zipped up quick as could be!

Missing My Pain Doula

It was going to take an hour for the results. I got really, really sad about not having Zack with me.

Zack had been my medical doula for 2 decades. Longer. Even when he was pregnant (30 years ago), he was with me when I had surgery, loving me through it.

I began having another spasm and cried as I did my Lamaze breathing, leaning over the raised head of the bed, my tears falling onto the blue sheet as I huffed and puffed in a sobbing rhythm. Big hot tears of remembering how Zack spoke up for me, protected me, gave me my meds on time, even wiped my ass after surgeries when I couldn’t reach. (That’s love right there.) I didn’t want to bother him with my pointless sadness, so didn’t call, but I could feel the emptiness engulfing me.

I was NPO, knowing surgery might really be possible, and how alone I was going to be if that happened. How would I get food? How would I remember my meds? How would my ass stay clean?

(An aside: I have been being terribly non-compliant with my Risperdal and Trazodone. I asked friends to help remind me/encourage me to take them about 11 or 12 at night, but I ignored them and just stayed up for 24+ hours. Zack was like a Psych warden… handing me my pills and watching while I swallowed them. Alone, I get to be a bad patient because I would rather feel GOOD than sleep. Even though there are bugs and shadows and such. Yeah, I know. STOP IT! One of my sweet friends sent me a picture of herself making a stern face that she said says, “TAKE YOUR MEDS!” Maybe it’ll help.)

The Results

The NP came in and told me they couldn’t see any hint of a hernia in that area. I was really surprised. However, the gallstones were present, but labs showed no cholecystitis, so surgery was ruled out for the moment. She said I did need to have surgery as soon as possible, though. I told her I had a GI Doc I would call in the morning (10/10/16… I did… next post).

She then said I had an infection in my intestines. (The paperwork is in the car, I can’t find what it is called at the moment.) She wanted me on Flagyl, but I am allergic to it, so changed it to Cipro. She also was prescribing Bentyl for the colic-like abdominal spasms. She said she would prefer I stay in the hospital for a couple of days, but I said I could take care of things at home. (Sheesh. Lyin’ through my teeth, I am.) She said, fine.

When she went out to do discharge paperwork, the sweet nurse came in and did vitals. My HR was now up to 124. She left, the NP came back in.

“I really want you in the hospital for a couple of days now.”

I asked what would they do. She said meds and pushing fluids. I said I could do that at home. She had me sign out AMA. I was told to return to the ER in 12 hours if I couldn’t see my GI doc, wanting to check my HR again. I said, “Sure, no problem.”

I left with the prescriptions and tried the 2 closest pharmacies, neither of which takes my insurance. I was exhausted, crying in frustration and went home.

I tried working, but was in so much pain, I laid in bed and boo hoo’d myself to sleep. I slept fitfully for a couple of hours at a time. Up for 2, back down again for 2.

I did not take my Risperdal or Trazodone last night.

I called my GI doc’s office at 7:50am and got an 8:30am appointment.

That’s the next post.

Next: Blindsided: The Fat-Shaming Doc Visit

Diabetic Neuropathy Begins

heavy sigh

Legacy of Diabetes

I’ve had Type 2 Diabetes since I was 34-years old… for 22 years now. My entire Cuban family had diabetes as well; skinny, fat and inbetween. My entire life, I watched my pot-bellied relatives manipulate their insulin so they could eat and drink whatever they wanted. I watched as they lost their eyesight, had heart attacks, then had feet and hands cut off from infections. My grandfather died before I was born from complications of diabetes. My grandmother, aunt, uncle all died from diabetic complications. It seems I am next on the list.

Added Challenges

My Blood Glucoses (BGs) are almost impossible to control. I have been having to take steroids (SoluMedrol & prednisone) because of several allergic reactions lately. (One reaction was to Azo… the other to the 6th iron infusion I had… that one sent me into the hospital because I was scratching myself bloody and using scissors to scratch my back… also bloody.)

My diet is comprised of almost all carbs for a variety of medical reasons, including dental. Exercise is impossible. I am destined (doomed?) to using insulin to get my BGs under control.

Doctor Visits

Whenever I see doctors, they ask if my feet are numb, tingling or hurt. I have said no for many years. Now, however, they are beginning to hurt more and I realize the pre-pain feeling I’ve had has been like a tight sock on my right foot. Now, at night, there is distinct pain.

I’ve never read about Diabetic Neuropathy before today and now I am scared.

Besides the foot pain, I also have what seems to be untreatable diarrhea. Taking 30 Imodium a day does nothing to quell the issue. Lomotil doesn’t do a thing either. The GI Doc said I need to get the Endo to help. I see the Endo on Monday. Hope they are able to give me something else. It is distressing, always having to dash to the toilet… pretty challenging trying to work.

I have some Cymbalta from when I was rx’d it for depression and read that was one good medication for the neuropathy. Hopefully, someone will rx it (or something else) to help with the pain.

One More Medical Problem

I have an ongoing list of medical crap I am dealing with, all because of being fat. My fat life is (quite literally) piling on the complications.

All my fault.

heavy sigh

Nuts & Bolts of Calling a Doctor’s Office

This subject seems to come up a lot, so I thought I would do a Tutorial on how to get in touch with a person and not a machine when you’re calling a doctor’s office.

My first and probably most important piece of information is:

CALL EARLY IN THE MORNING!

I cannot stress this enough. Even if you have to wait on hold for awhile. I tend to call about 9:45am. By then the logjam has passed and the way is pretty clear.

Calling in the morning gives the doctor the entire day to get your chart, prescribe meds or answer your questions. Lunch time is the usual time they read your message, so if you call in the afternoon, unless you are in the ER, you will be waiting until the next day for an answer.

If you are really in a crisis (psych, serious fever or infection), I would call back right after lunch. Be your nicest self! NO yelling about “Why hasn’t she called me back yet?!?” crap. Just kindly say, “I need help. I am so ill. Can I come in tomorrow morning? Or might I talk to the nurse or doctor this afternoon?”

“I need help” is a wonderful way of garnering sympathy for your situation.

A Practice with a Receptionist

If your doctor is in a practice with a receptionist, it’s easier to get a hold of the doc you’re needing because someone should always be available during the 9-5 workday.

You often will be triaged by a nurse before getting a message to the doctor. Still, the earlier you call, the earlier your voice will be heard.

Most offices close for lunch… either between 12pm and 1pm or between 1pm and 2pm. Calling then, you will get a machine. Leaving a message on a machine is like talking into an abyss. Call back when lunch is over.

Calling Mental Health Professionals

Therapists especially are meticulous with the timing of their appointments. They are 50 minutes long, beginning at the top of the hour, ending at 50 minutes after. I have great luck calling in that 10 minute window between clients. Some will listen to messages and call back during that time, but many pick up the phone, too.

Know what you are going to say. They have moments to figure out what you need before the next appointment starts. Write it down if you need to before you call. Be ready!

Psychiatrists’ schedules are a bit more wonky, so leaving a message might be necessary. Just as if you were talking to a person, have what you want to say ready. The more info you can leave in the shortest amount of time… being concise… helps everyone get their needs met.

Playing Dumb

When I really need to get through to someone (and you pick your battles here), I feign accidentally hitting the button that says “If you are a care provider and need to speak to someone now, press 1.” Use that sparingly, especially in the same practice. Really, judicious use, please.

Bypassing Automated Menus

If you’ve read this far, I get to teach you a trick I learned from another operator. Not specifically for doctor’s offices, but really helpful for banks, phone companies, cable companies, DMVs… any of the bazillion places that have phone trees you seem to be forever lost in.

Press 0 (zero) fast, over and over and over again. PressPressPressPressPress a dozen or more times. 8 out of 10 times, this gets me to a person.

Patient Portals

If you doctors’ office has a Patient Portal, sign up for it asap!

In the portal, you can email your provider, ask for refills, make appointments without calling and see your chart and most lab results.

Patient Portals are the best.

If I didn’t answer something, ask me about it!

Blindsided: The Fat-Shaming Doc Visit

Written 10/12/16 about 10/10/16 Gastro-Intestinal (GI) doctor visit.

So, while I have been fat my whole life and have had my share of medical fat-shaming from fat-hating doctors, it has been a very long time since that’s happened… whether from their shifts in attitude via Continuing Education about inclusivity (or at least learning to keep their mouths closed about their attitudes) or because I learned to open my mouth to shut it down.

me-hospital-3 — Unknown date of un-remembered hospitalization. PICC Line insertion successful.

The GI Doc

I had signed AMA out of the hospital 12 hours earlier when the doctor, small, a person of color (no clue the origin, but shouldn’t matter),very pretty walked into the Exam Room.

“Oh, my! You look awful,” she said. I’d seen her 3 times before, but I am memorable by what I wear (tie-dye) and being bald. And I am very, very nice to care providers.

“You look like you haven’t slept in weeks!”

“Uhhh, I am at the tail end of a 2-3 month Manic Episode, so no, not sleeping much.”

She went over the paperwork, labs & prescriptions from the night before. She looked at me pretty harshly and said, “You really need to be in the hospital. You are extremely dehydrated.”

I told her no one said anything like that the night before, but I would probably still not have stayed.

She said, “Stubborn.”

Dehydration?

The reasons she said I am dehydrated:

chronic diarrhea despite 20 Immodiums and 3 Pancreatic Enzymes a day
vomiting a couple of times a day
taking Lasix to pee! (because of the ankle swelling from the Risperdal)

I would have never recognized the signs of dehydration because they were in the labs! I guess the NP the night before didn’t think I was that dehydrated because she never even said the word to me. My pee is crystal clear; strange. She said that was why my HR was 124 upon discharge. I am sure I shrugged.

Medications

She said I needed to get the ER prescriptions filled (the Cipro and Bentyl) and she added Prilosec, Lomotil and Zofran.

This is what my New-Taking-Now meds look like (as they lay against my ballot which went in the mail yesterday!).

“Good-Luck with That.”

“You need to have your gallbladder taken out as soon as possible, before it gets infected.”

Okay, true. Emergency surgeries on fat people have an increased risk of morbidity and mortality.

But there was more to her sentence above.

She ran two of them together, “You need to have your gallbladder taken out as soon as possible, before it gets infected… but I am sure you won’t find a doctor to touch you because of your size.”

blinking as I watched the contempt drip from her lips

“What do you mean?”

“I don’t think you will find a doctor in our area to do the surgery because of (again with the disdain) – the risks.”

I told her I knew that Bariatric Surgeons (who do Weight Loss Surgeries) are ALL GI Docs and I would find one to take my gallbladder out.

“Good luck with that.”

She gave me my paperwork, prescriptions and her bulldozer-sized hatred of fat people… and walked out.

I sat there and cried.

raw Raw RAW

I am strong. Most of the time.

Right now in this (decreasingly) manic place, I feel flayed, nerves on the outer surface of my body. No ability to control what or who hits them. I merely react to the sensations.

This one was an animal claw dragging down my chest… slipping in and gashing my heart as it went by.

I had not felt such shame in eons. And I see doctors all the time! I mean, really, probably not for at least a decade have I been medically fat-shamed. (Many medical & personal fat-shaming experiences to come in future posts.) I felt hideous in those moments after she smashed shit down my throat, squishing it with her heel as she left the room.

Pondering

I stumbled out of the building, crying still, and drove home.

I began to find my Power, many minutes too late and useless at that point, but I thought, “For fuck’s sake, I cannot possibly be the fattest person on the face of the earth who needs abdominal surgery.”

And then I got mad, but it was a gradual dilution of the mad into the shame where, for a time, if they were able to be separated, you could see they were half and half. Now, 2 days later, I am more mad, but in retelling it to my Insurance’s Case Manager, I cried from shame so hard she kept having to say, “Breathe. Breathe.”

I have been given 3 Bariatric doctors’ names… one in Orlando, one in Tampa and one in Miami. I told my Case Manager I would go anywhere in Florida to get it done. Even if I had to go to Shands Teaching Hospital in Gainesville. I called the doc here in Orlando, explained the situation to the Office Manager and she said she would talk to him and get back to me tomorrow. I told her I knew it was not his usual surgery, that I had had Weight Loss Surgery (WLS) in 2001, but was fat again and needed help, please.

We’ll see what happens.

I will find a doctor to help me.