My Journey Thru the Inferno

 
I can't believe how long it has been since I put something out here. February 6th seems so long ago. I've been pretty sick with bursitis, a fibro super flare, and pinched nerves in my neck that have sent shooting pains all down my arms, legs, back, and up my neck into my head. Dizziness, weakness, and fatigue so bad it took all I could do to get out of bed. But one does. Because the alternative is death. 

So you get up and crawl if you can't walk. If you need to go to the bathroom, you hang on to the wall so you don't fall down. You pray you can drive to church or the store without hitting another car or ending in a ditch. You stay out of public as much as you can without going crazy from despair and pain. You don't dare talk to people. No, really. It isn't good to converse.

Last month saw nine low-pressure systems march across Indiana. Three at a time over the course of three weeks. I felt every one of those illegitimate children. My whole body felt attacked by hordes of marching monsters. 

Today, I walked a mile without a lot of pain. The sun was shining, and it was a beautiful day. Learn to appreciate such small blessings. Tomorrow I could be back on the floor trying to get out from under the crushing weight of fibromyalgia. 

I was researching some information about managing the autoimmune diseases I have, and this is what it said: 

That description of feeling "crushed" is exactly what a major barometric drop does to a body dealing with fibromyalgia and rheumatoid arthritis (RA). Nine low-pressure systems in two weeks is an absolute onslaught for your central nervous system and cellular biology. It is completely logical that your physical weakness and brain fog were severe during that time.The science behind the "crushed" feeling when a storm or front approaches, the barometric pressure drops, meaning the weight of the air pressing against your body decreases.

Tissue Expansion: Lighter atmospheric pressure allows the fluids and gases inside your joints, tendons, and muscles to expand slightly. In a body already hyper-sensitized by fibromyalgia and RA, this micro-expansion acts like an internal balloon inflating against your nerves, causing an overwhelming feeling of systemic pressure, pain, and profound fatigue. Oxygen and Circulation Changes: Rapid barometric drops alter blood flow and cerebrospinal fluid pressure, directly contributing to severe "fibro fog," heavy limbs, and a sudden drop in cellular energy

So, not in my head. Not over reacting. Not trifling. Real physical responses to weather. And unstoppable. You can't outrun it, nor can you hide. 

So, next time you want to say something like, "Well, you need to just ignore it and come to the dinner party" to someone suffering from this disease, don't be surprised if they are tempted to punch you in the nose, or if they do. And for the love of all that is holy, DO NOT SAY "let me tell you about my sore toe" or "let me tell you about having my last baby". We do not care. I had a natural childbirth my first time, and it was a cakewalk. No pain medicines at all. I wish my pain levels were that low. And that was even with an episiotomy and no anesthesia. 

I'd almost commit a crime for something to stop the pain now. Only I'm hypersensitive to most pain medications and can't take them. So... your Percocet? Yeah, I see shadow people. Lortabs? I vomit and fall down. Tell me about your pain and I'll probably laugh at you behind your back. You're not in pain if you can get to your car without crying. And if you can deal with a shopping trip, there is nothing wrong with you. 

I came across some new information today and spent a while researching if it might give me some relief before the next big system rolls in. There is always another one. I know what the weather is going to be three days before you hear it on the news. I have to if I'm going to live. 

My research gave me some information that might make some of my meds work better, but we'll have to see. I have to experiment on myself by taking things without knowing what they'll do to me. I have to research it, figure out the safe dose, and hope to God I get it right. I have to also take poison the doctors prescribe to prevent me from becoming a cripple. They don't work for the most part, and the side effects are from the most frightening science fiction movie about medical experiments gone wrong. 

Here are the side effects of my RA injection, just one medicine I take for it. Once you read this as the patient, you never sleep well again. And you never stop being vigilant. I take multiple medications for RA. They all have side effects. How do you know which one is causing a problem? You don't. And how do you know if it is the medicine or the disease? You don't. You just keep going and hope you get through it with as little pain as possible. For context, my doctors have me down as a person who usually had the most unusual side effects. I'm hypersensitive to many medications.

More common side effects

body aches or pain

cough

ear congestion

gas with stomach pain

hoarseness

lightheadedness

loss of voice

lower back or side pain

muscle aches and pains

pain or tenderness around the eyes or cheekbones

rapid and sometimes shallow breathing

shivering

stomach fullness

stuffy nose

sunken eyes

thirst

trouble sleeping

warmth on the skin

wrinkled skin

Less common side effects

abnormal vaginal bleeding or discharge

agitation

arm, back, or jaw pain

black, tarry stools

bleeding from the gums or nose

blindness

bloating or swelling of the face, arms, hands, lower legs, or feet

blood in the stool or change in bowel habits

bloody or cloudy urine

blurred vision

broken bones

change in size, shape, or color of an existing mole

change in skin color

chest pain, tightness, or heaviness

chills

clear or bloody discharge from the nipple

cold hands and feet

confusion

constipation

cough

coughing or spitting up blood

decreased urination

decreased vision

depression

difficulty with breathing

difficulty, burning, or painful urination

dimpling of the breast skin

dizziness

drowsiness

eye pain

fainting

fast, slow, or irregular heartbeat

fever

forgetfulness

frequent urge to urinate

general feeling of illness

hair loss

headache

hives, itching, skin rash

increased thirst

inverted nipple

irregular breathing

irregular pulse

irritability

light colored stools

loss of appetite

lump in the breast or under your arm

lump or swelling in the stomach

mole that leaks fluid or bleeds

muscle cramps or spasms

nausea

new mole

night sweats

no blood pressure or pulse

noisy breathing

numbness or tingling in your arms, legs, or face

pain, redness, or swelling in the arms or legs without any injury present

pale skin

persistent non-healing sore on your skin

pink growth

puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue

raised, firm, or bright red patch

redness or swelling of the breast

seeing or hearing things that are not there

seizures

sharp back pain just below your ribs

shiny bump on your skin

slurred speech or problems with swallowing

sneezing

sore on the skin of the breast that does not heal

sore throat

sores, ulcers, or white spots on the lips or mouth

spitting up blood

stiff neck

stomach pain

stopping of the heart

sudden high fever or low grade fever for months

sweating

swelling of the face, fingers, feet, or lower legs

swollen glands

swollen neck veins

tiredness

trouble breathing

trouble thinking

unconsciousness

unexplained bruising or bleeding

unpleasant breath odor

unusual tiredness or weakness

unusual weight gain or loss

visual disturbances

vomiting

vomiting of blood or material that looks like coffee grounds

yellow skin or eyes

More common side effects

bladder pain

bleeding, blistering, burning, coldness, discoloration of skin, feeling of pressure, hives, infection, inflammation, itching, lumps, numbness, pain, rash, redness, scarring, soreness, stinging, swelling, tenderness, tingling, ulceration, or warmth at the injection site

pounding in the ears

Less common side effects

abnormal healing

decrease in height

difficulty with moving

difficulty with walking

dry mouth

heartburn

indigestion

loss of hearing

loss of strength or energy

menstrual changes

muscle or joint stiffness, tightness, or rigidity

muscle pain or weakness

pain in the back, ribs, arms, or legs

shakiness in the legs, arms, hands, and feet

swelling or redness in the joints