Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In

Chronic Pain, Autoimmune Diseases & Rare Diseases Check-In.

☀️Not Many Symptoms Right Now
🌦A Few Symptoms But They’re Manageable
☔️Recovering From A Few Heavy Symptom Days
🔥In A Flare
🚨Symptoms Feel Unmanageable

Autoimmune Diseases
An autoimmune disease is an illness that causes the immune system to produce antibodies that attack normal body tissues. Autoimmune is when your body attacks itself. It sees a part of your body or a process as a disease and tries to combat it. This is different from a Primary Immuniodefeciency Disease (PIDD), which occurs when when you do not have the ability to defend against outside diseases.

Rare Diseases
In the United States, a rare disease is defined as one that affects fewer than 200,000 people. The prevalence of a rare disease usually is an estimate and may change over time.

Individuals can be disabled by chronic autoimmune diseases and rare diseases such as Asthma, Diabetes, Lyme Disease, Cancer, Chronic Fatigue Syndrome, Lupus, Hashimoto/Grave’s Disease, Fibromyalgia, Celiac Disease, Multiple Sclerosis, Ehlers-Danlos, Arthritis, Atopic dermatitis, Ankylosing spondylitis, Sjögren's syndrome, Psoriasis

This is a brief list, a full list can be found online.
It can be very challenging for individuals with invisible chronic illnesses to receive support. Many of us experience discrimination, stigma, limited support and toxic positivity from people.

☀️Not Many Symptoms Right Now
🌦A Few Symptoms But They’re Manageable
☔️Recovering From A Few Heavy Symptom Days
🔥In A Flare
🚨Symptoms Feel Unmanageable

Friday, October 16th , 2020

When fall and winter arrive I get a bit nervous about my depression returning. I’ve been doing really well the last two years. I have not been on any depression medication or any antipsychotic since the fall of 2018. I created my own coping tool box which I also have to stay up on my autoimmune diseases and rare diseases. I have Hashimoto/Thyroidism/Graves Disease which definitely does impact your mood and emotions.

I had a great conversation with my teenager today. My teenager also has Hashimoto and other autoimmune diseases and rare diseases as well. We both acknowledged that changing our foods, eating certain foods in moderation and regularly being active has made a big difference in our moods. Our mood is not such a roller coaster.

The last few days I can feel how my body is starting to become symptomatic. Weather changes are a big challenge for me. My fibromyalgia pain and fatigue is not shy. Yesterday and today the nausea has been terrible. I drink a lot of caffeine free loose herbal teas. I’ve been very diligent about taking my vitamins and supplements. We recently moved and today a contractor installed grab bars in my restroom.

I walk our dog frequently. Being out in nature helps keep my depression away. My legs have been in a lot of pain so I don’t walk too long. I really miss going hiking and look forward to resuming. I sometimes get overwhelmed juggling multiple chronic illnesses and having to stay on healthcare specialists to provide continuity of care.

🤞🏽My car 🚙 is making noises. I have an appointment tomorrow morning 🥺. I’m praying to my ancestors....
Life is definitely a roller coaster. In the last two months I’ve paid $450.00 to two veterinarians. I need to look 👀 into insurance and see if it’s a better option.

Me and My Grandma Were Initially Diagnosed w/ Pneumonia. Then Diagnosed w/ Covid19. My Mom, Stepdad and 9 Year old Niece Also Diagnosed w/ Covid19. Me, My Mom and Grandma Are Very Symptomatic. Used My Epipen Yesterday and had to go back to a local hospital. Covid19 is not fake or a hoax.

I’ve been sleeping a lot, taking my vitamins and supplements. Plus eating a lot of fresh vegetables, fruits and drinking herbal teas. And spraying all the rooms w/ Lysol, cleaning doorknobs and light switches etc.

I was not sure about the Pneumonia Diagnosis. My Grandma was Positive it was wrong. My First Symptoms, My Asthma Was Continuously Flaring Up. Then Fever, Chills, Diarrhea and Vomiting etc. The three of us with symptoms all have asthma and other autoimmune diseases. Plus I also have two rare diseases.

Still trying to heal from Covid19. It turns out my niece and nephew contacted Covid19 at their in person school. Which is how we all (mom, stepdad and grandma) ended up with Covid19. Me and my teenager were helping them with homework and running errands for my grandma. We’re all on antibiotics plus me and my teenager are on additional medications for our rare diseases. My teenager tested positive for Covid19 Friday, October 30th, 2020.

My beginning symptoms were terrible. My fever continuously spikes 100.7 and 100.8, diarrhea, chills, dizziness, loss of appetite, lots of sleeping, very fatigue and my two rare diseases continued to flare up. My treatment at a Mayo Clinic location has been pushed back.

Having Covid19 is not only Horrible. If There is an Emergency with Your MINOR CHILD. Local Hospitals Will Make You Wait Outside in the Parking Lot. Happened to Us Thursday . #coronavirus

Happy International Womxn’s Day!
Unfortunately, I feeling worse than yesterday and was not able to participate in any awareness runs or walks. This sinus infection has my throat sore, I feel very fatigued, runny nose and my Hereditary Angioedema decided to flare up as well.

It seems that each time I have a sinus infection or respiratory infection it triggers both of my rare diseases.

Thursday, March 11th 2021- I have my consultation with my new immunologist. I have my fingers crossed that he will be a provider that listens.

Chronic Idiopathic Urticaria- I’ve tried several antihistamines over the years and the only one that works for CIU is hydroxyzine...unfortunately it’s a sedative.

Xolair is not a good match for me...it’s too risky in regards to the side effects and other autoimmune diseases that I have.

Hereditary Angioedema-I have one Firazyr injection remaining. My previous immunologist did not feel comfortable prescribing me a preventative medication. He said, the side effects were too much for my health.

I’m having a day of extreme frustration.

I’m tired of itchy chronic hives, not regular hives that feel like my skin is on fire covering my whole body and face.

I’m tired of my face, feet and hands looking like I was jumped into a gang.

I’m also tired of fatigue, sore throat and runny nose.

I’m tired of having so many chronic illnesses that finding treatments is difficult.

I’m also so hurt that I’ve lost multiple family members. The grief is so real. I know my ancestors are in my corner and watching over me but the pain of missing my family members hurts deeply.

I’ve been continuing to eat fresh fruits, vegetables, drinking a lot of water and non-caffeine herbal teas. Hoping this sinus infection will pass which would calm my flare ups. I purchased a new Fibromyalgia cookbook. I’m looking forward to feeling better and being able to cook the recipes.

Saturday was decent. I never say my day is “great” and the term “good” makes me equally as uncomfortable. Why? I’ve had depression since I was 16 years of age. Depression is like any other chronic illness....chronically flaring up. I don’t like labeling my days as “great or good” because of the off chance I jinx myself. Yes, seriously and toxic positivity (which is gaslighting) will not change my view. I had a close friend with bipolar, asking about her day was a trigger.

Although I’m no longer in remission, my autoimmune diseases and rare diseases impact my life more than depression. I’m still cautious about labeling my days. Most of my flare ups happen after midnight. A few months ago, I was having a fun day. I was asked about my day and got caught up in the fun I had I said, “it’s great.”

I **** you not, that night I had a horrible Chronic Idiopathic Urticaria flare up. I actually don’t see the purpose of sales clerks who are complete strangers asking customers about our day. A simple greeting would suffice. I doubt these sales clerks wanna hear about my crappy insurance coverage and **** load of medical bills. I usually respond with, “I’m alive.”

I’m very frustrated. Thursday, March 18th 2021, an urgent care clinic told me to go to a local hospital. The urgent care- was not able to help with the my Chronic Idiopathic Urticaria flare up.

Local hospital- Nurse practitioner did not know what to do and just checked my basic vitals.

Male medical doctor- Verified my vitals. I was asked multiple times if I fell, hit my leg or was hurt by someone. Me: “No, it’s called Chronic Idiopathic Urticaria. This just happens to be the worst flare up I’ve ever had.”

Female medical doctor- Had a little knowledge. She was aware that dexamethasone, prednisone and triamcinolone would not help at all. The first two would only cause weight gain. She failed to know that also offering to give me hydroxyzine (which I do take for emergency flare ups) would be a horrible idea being that I was at the hospital alone. Hydroxyzine- is a antihistamine generation one sedative.

Being recommended and prescribing a medication (Doxepin) with possible side effects of: thoughts about suicide or dying
* attempts to commit suicide
* new or worsened symptoms of anxiety
* feeling very agitated or restless
* panic attacks
* trouble sleeping (insomnia)
* new or worsened irritability
* acting aggressive, angry, or violent
* acting on dangerous impulses
* an extreme increase in activity and talking (mania)
* other unusual changes in your behavior or mood

Xolair - Been offered this by multiple immunologist and it has too many “possible” side effects that could make other autoimmune diseases I have worse. Hair loss and increased pain. I also have Fibromyalgia and Alopecia. I don’t need the possibility of more hair loss or more pain.

Me: I decline Xolair and Doxepin prescription

I’ve been asked about getting a Covid-19 vaccine by my primary care provider and new immunologist.

My thoughts: First let’s focus on assisting me with my current chronic illness flare ups.

I’ve been thinking about it however I’m not interested in opinions from able bodied people or individuals without the exact rare diseases and autoimmune diseases that I have. Our situations are not the same.

Today was better. My appointment with my new immunologist went good. All the news was not good but I appreciated that he thoroughly went over 5 pages of labs line by line. I do feel he’s very knowledgeable, it’s still important to me that all my providers not lash out like a narcissist when I decline a treatment recommendation. At the end of the day they need to respect my final decisions. It’s my body and I’m not willing to roll the dice on medications that have severe side effects. It turns out my Hashimoto levels are completely out of wack which is causing my two rare diseases to flare up. I have a lot of medical discussions to make very soon. I’m just trying to relax this weekend and take it easy. I’ve been restricted from running which my feet are swollen, I can’t get any of my shoes on. I purchased a pair of recovery slides.

I’m currently restricted from running however have been walking 15-20 minutes. My new immunologist is out of state. The other immunologist in the practice, I wanted to see to begin with. She was out with COVID and just returned to the office. I had an appointment with her yesterday. We have a game plan and now waiting on lab results.

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Many Meds and Treatments for Rare Diseases are Available at Speciality Pharmacies Instead of local “Regular Pharmacies.” Pharmaceutical Companies want to Keep Our Business.

We are Assigned Patient Support Specialists. They Follow Up, Check-In Prior to Colonial Holiday Closing, Schedule Shipping and Handle Problems We Encounter Getting Adequate & Correct Medical Treatment.

If Your Provider Decides to Change Your Speciality Meds or Treatment. It Will be Your Responsibility to Notify Your Assigned Patient Support Specialists.

You Will Be Assigned New Patient Support Specialists Each Time Your Speciality Meds or Treatment is with a Different Pharmaceutical Company.

I’ve Opted for Sending My Patient Support Specialists, Dear Jane Emails. Lol

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I received my first two Xolair injections (speciality monthly treatments) on Friday, April 23rd 2021.

So Far My Chronic Idiopathic Urticaria Flare Ups and Angioedema have *NOT Changed.

I’ve had an increase in my Fibromyalgia Pain. (I’m a 4:20 LICENSED Spoonie). I’ve purchased infused bath bombs, I have cannabis edibles and medical cannabis to smoke .

It seemed like every pharmaceutical medication recommended for my Fibromyalgia has serious side effects like “suicidal ideation”, “increased depression”, “increased anxiety and “agitation.”

I understand what “possible side effects” mean, it means enough people experienced those side effects to become a warning.

Immunologist - A). Has Recommended I Continue Taking Hydroxyzine Twice a Day and using Clobetasol cream
for Chronic Idiopathic Urticaria.

B)Dexamethasone for Angioedema.

I have my fingers crossed that Xolair injections will eventually put me in remission or reduce my Chronic Idiopathic Urticaria and Angioedema flare ups.

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This week my Fibromyalgia pain and muscle spasms have been non-stop. Non-stop and keeping me up at night. This evening I took half a cannabis edible….slept. I cooked in my crockpot. I really freaking like crockpots with multiple settings . I ate some southern cabbage, cleaned my kitchen and took a shower.
My teenager received a lot of hospital treatments and is in summer school. I’m going to take another half an edible and get a few hours sleep .

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“As someone who has been consistently going to therapy for years & working "on myself"....... let me tell you there is only so much individual introspection and healing you can do when the structural forces and external events contributing to mental illness continue acting on you.”
@kvetchings (Twitter)

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I feel grateful I logged in 380 days in a row, logged 343 exercises and logged 580 meals.

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I’m extra productive in the wee hours of the morning. I send multiple business related e-mails/submit grievances, get forms ready to mail and call up tech support. Lol I’d love to be a fly 🪰 on the wall when these folx see what time I regularly send them e-mails

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“Money worries can be paralysing, devastating. Over a long period....
Plus, being poor costs an absolute fortune.”
Twitter

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Sunday got up early, took a shower and scheduled an appointment to have a massage.

I regularly have feet and body massages to help with stress, anxiety, depression and Fibromyalgia tender points. I really enjoyed the massage.

Yesterday, while waiting on my teenager, a lady walked by and I noticed her shirt,

“I absolutely am not trying to fit in.”

I put my window down and complimented the shirt.

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