RE: Living With Chronic Pain And Navigating Every Day Life ...

I had a co-worker (that I thought was a friend) do something rather crappy to me last week at work.

We aren't supposed to park the vans (that are used to transport employees back to base at the end of our shifts) on the sidewalk because it's against ADA Policy.

I was happy to see our university finally enforce this because I've seen many a wheelchair bound person have to go out of their way to get somewhere due to this thoughtless (and illegal) practice.

I'm not in a wheelchair yet (thank goodness), but I do have a limited range of motion in my hip joint and utilize a cane to help provide stability and ease the pain when walking around, but when the van is parked on the sidewalk I am still unable to safely access it, even with the little step stool I use because it's way too high on the driver's side and the passenger side is on rough, uneven terrain.

So, I asked the driver ( the coworker I thought was a friend) would they mind moving it over to the parking lot because ... 1. It's not supposed to be on the sidewalk, and ... 2. Because of limited mobility in my hip joint I can't access it from where it's parked on the curb.

Well, they must have had some kind of wasp in their pants because they jerked the van around and exited it leaving it even more inaccessible than before and stalked off. I asked the other occupant of the van would they mind moving it and was basically ignored.

I walked away and waited nearby for several minutes (hoping another coworker would come along and do the right thing) ... Finally the other employee opened the door and shouted over at me ... Hey!, aren't you going to move the van to which I replied I can't get up into the damn van in order to move the damn van, and that is when they finally (yet grudgingly) moved it back over to the parking lot acting like it was such a taxing task to their able bodied little self!

I'd done walked over there (in pain) to where the van was illegally parked, then been left standing there (in pain), and now I've got to walk all the way back over to where the damn van should have been parked in the first damn place (in pain the whole damn way the whole damn time)!

Apologies for all the damns, but ... Dayum!

After this dog and pony show, I'd had enough and when I finally got myself up into the van, I immediately called a supervisor and told them that I was sick and damn tired of my co-workers blowing off the ADA Directive about not parking on the sidewalk and disrespecting my mobility issue to boot! ... I also informed them that I would be writing an e-mail to our operations manager to see if he could make the directive have a little more impact because it'd better damn well never happen again ... Ever!

When I finally got back to my car and went to activate my music app on my phone before leaving, there was a text from the guy I thought was my friend stating that what they did wasn't intentional, to not take it personally and to take care ... I muttered under my breath, EFF YOU!

The next day he said ... Hey, didn't you get my text? ... I don't want to lose our friendship over a sidewalk and you didn't respond, so ... Then he started trying to issue a backhanded apology for his bad behavior by blaming me for him acting the way he did!

Boy was I steaming, but I simply replied, we're cool ...

I didn't even try to make him see what he was doing was wrong ... I didn't even tell him I'd already deleted his number from my phone.

You see, it wasn't about the sidewalk, or the violation of ADA Policy ...

It was about someone who's supposed to be a friend - that knows their buddy has a mobility issue - and instead of helping that buddy out, they left them hung out to dry.

So to heck with them and their apology.

Pfrog ain't got time for friends like that!

No, Pfrog, you don’t. That twerp is no “friend”. 👿

I should say, that person is no pfriend!

Thankfully our operations manager is a good guy and won't brook any foolishness when it comes to stuff like this!

It still amazes me how some employees will try to put one over on or attempt to get away with what they can.

Then they act like the other person is wrong for having to go to management to make them to do the right thing!

Snitches Get Stitches and all that kind of crap ...

This ain't Jr. & Sr. High, People!

Grow up for Pete's sake!

It just makes me believe less and less in humanity each and every time something like this happens!

I hear you, Pfrog. Personally I'm not a big fan of humanity in general.

On the other hand there are some special humans, maybe like your Operations Manager?

Wishing you a relaxing weekend....

This week's event makes the third for the year & involved construction on the bus yard.

The longer walk would make it more difficult (and painful) for those of us with mobility & health issues to get to our buses.

So, until the project was finished (2-3 days max) they were going to provide us a ride out to our buses on the shop's maintenance cart.

But that got shot down by the shop foreman - because he didn't want to be caught up in the drama, I guess ... And, I get that!

All because some able-bodied asstwit complained we were getting "preferential treatment".

Again, our wonderful operations manager came through for us in spite of that jerk!

The creative way he got around this *******'s complaint impressed the heck outta me!

Probably left that SOB steaming mad too, but naught he could do about it so ha-ha to that!

It's really nice to know someone has your back when the chips are down!

Wow, what a pain in the posterior and other regions that guy was. I'm glad you reported the problem and someone cares.

Some people like to sashay around ostentatiously wielding their limited power. I guess it makes them feel important .

Glad your O.M. got things squared away for you so you can more comfortably get around, Pfrog.

Pfrog, I would like to be able to work part-time. I come across many able body people employed at businesses that are full of ableism. The amount of bull crap that they complain about or see as an inconvenience because they do not want to be inclusive of individuals with disabilities never seem to amaze me. I had a manager at one of our local Best Buy tell me if I had grey hair and was in a wheelchair that his employee and folx in society would not attempt to violate accommodations that ADA covers. I explained that his lack of knowledge also showed in his employees. Many people are not aware or knowledgeable on ambulatory wheelchair users or individuals with invisible disabilities, individuals that use mobility aids and devices. I use a cane, accessibility devices at my residence as well. If I do begin to work part-time I’ll definitely put some thought into the company and position I take. I did file a formal complaint with our local attorney general and my case was accepted.

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.

Apologies pfor late responses, @Cocosurviving ...

I hadn't visited my profile in a while and didn't realize I'd had posts on this thread.

I'm not able to return to work and have had to apply pfor disability.

Society is not very kind or accommodating to those of us that they consider less than whole.

ADA likes to talk a good talk, but when it gets down to brass tacks it's just empty pfeel good talk pfor them ...

What a disabled person has to go through to get a reasonable accommodation is unconscionable!

If I see somebody struggling, I'm going to help if I can and if I cant ...

I'm certainly not going to throw more stumbling blocks in their path!

If everybody would just do right, there wouldn't be any wrong ...

Sending you cyber hugs 🤗. So very, very true. I’ll never forget the red tape I was put through applying for SSDI.

My teenager has been attending virtual school (high school). It took over three weeks before we received a response and appointment for an IEP meeting (accommodations). The principal of the virtual school seemed to be full of ableism. My elementary school niece and nephew had a similar situation. They both have learning disabilities which somehow were removed off their IEPs this year without medical documentation that supported the removal. Their learning disabilities have been added back.

I’ve read posts from parents speaking up about school administrators and staff not following students IEPs./504s. Plus using Covid19 as a reason to not follow students IEPs and 504s. I know you deal with a lot of pain and it’s hard not being able to work because of disabilities. We know when our bodies can not handle working or working full-time. I’ll definitely keep you in my thoughts.

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.

I'm so sorry for your suffering & grief @Cocosurviving ...

If I could make it all better, I most certainly would!

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.

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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Saturday was nice...very busy.

I have days when I’m very social and other times I need space and solitude.

I spoke with family and friends in Tennessee. Visited my dad and his wife...plus my momma and stepdad.

I didn’t make it to a YMCA location...outside was decent tho....I walked 1.2 miles

I tried helping a neighbor...bless her heart a yellow jacket flew inside her apartment. She had a can of spray, opened the front door and it would not leave...we also have vaulted ceilings. I had a neighbor help me before with the same situation. I’ll definitely be making a trip to get spray and another broom . I broke my broom killing a spider Lol

I came across a few Spoonie running groups on Facebook which is very helpful.

The month of May has several awareness causes.

Sunday- I wrote my monthly budget out, paid bills, updated my calendar and to-do-list.

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I actually believe I might be in the same boat as another person in our Xolair group. I believe Xolair injections might be making my Chronic Idiopathic Urticaria worse. I do write down...journal my flare ups.

I’m happy for folx that Xolair has been a game changer for Chronic Idiopathic Urticaria however it is misinformation to make posts that GUARANTEE results just because particular individuals are having success. The manufacturer does not GUARANTEE successful results. No pharmaceutical manufacturer can GUARANTEE successful results.

Everyone does *not have success with Xolair for Chronic Idiopathic Urticaria.

After having my second Xolair injections [300 mg] for May 2021. I called my immunologist office answering service. I spoke with a nurse on call and was instructed to go to a local urgent care clinic.

I had to be given higher dosages of steroids [and monitored] to calm down my Chronic Idiopathic Urticaria. Which I started also having Angioedema swells [top and bottom lip + my right thigh]. It’s painful and I’m on bed rest. My right thigh continues to swell with Angioedema.

It’s hard to think positive and hold out hope that these Xolair injections will begin to help when I’ve experienced zero improvement. I’ve continuously been instructed to go to urgent care or a hospital. Which my flare ups always happen in the wee hours of the night.

These medical bills are stressing me out. I’m already making payments but continue to return to urgent care or a hospital as instructed which creates more medical bills.

I’ve applied for medical financial assistance through a local hospital. I’ve been checking my mail waiting on a response. I also have multiple autoimmune diseases [Fibromyalgia, Hashimoto, Asthma, Atopic Dermatitis and Alopecia] and experience a domino effect.
My Fibromyalgia pain has been horrible as well. I treat my Fibromyalgia with medical cannabis, bath bombs, herbal teas, supplements and traditional medicinals. I don’t believe in pain medications [for me].

I’m not seeking any advice. I’d just rather post here because some individuals can relate to being frustrated with chronic illnesses.

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