[Pflowers]

Gentle hugs to you too @lizardlady ...

[Cocosurviving]

Greetings! It’s been a while. I am still taking things day-by-day. My first rheumatology office stopped accepting health insurance, straight private pay. I recently found a new rheumatologist and she seems very thorough.

July 2023- I was diagnosed with Osteopenia

Nov 2023- I was diagnosed with Lupus SLE.

In November 2023, I received a positive antinuclear antibody (ANA) test. Then a positive anti-double stranded DNA (Anti-dsDNA).

My new rheumatologist is going to double check everything collecting labs and documenting symptoms.

My Fibromyalgia has calmed down this week. We have a few warm days.

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[Cocosurviving]

I searched for a Lupus Check-In thread. I did not see a thread but I am not sure if it’s worth making a thread. It seems a lot of people on this forum have Fibromyalgia, I’m not sure about Lupus.
I wonder if a lot of people have several unpreventable autoimmune diseases. I have several.

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[DeeeSchmeee68]

Hello everyone
I may have posted before..
I have positive ANA and anti thyroid antibodies which my rheumatologist said will most likely never become anything.
Also a fibromyalgia diagnosis. I feel as though this needs each symptom to be treated individually.
What are your thoughts on gabapentin? I read it can cause depression so I'm scared because I get strange adverse side effects

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[Pflowers]

I'm not very trusting of medications myself as I've had a few adverse reactions in the past.

I've heard mixed reviews on the Gabapentin for pain from members of a psoriatic arthritis group I belong to. I guess it's like anything else, meds work differently for everybody, some have good experiences, others not so much.

I do hope you are able to find some kind of relief from the pain though ...

Living in constant pain sucks BIG time!

[DeeeSchmeee68]

Originally Posted by Pflowers

I'm not very trusting of medications myself as I've had a few adverse reactions in the past.


I've heard mixed reviews on the Gabapentin for pain from members of a psoriatic arthritis group I belong to. I guess it's like anything else, meds work differently for everybody, some have good experiences, others not so much.


I do hope you are able to find some kind of relief from the pain though ...


Living in constant pain sucks BIG time!

I appreciate your reply.
I tend to be more episodic depending on diet, sleep etc.

I'm sorry you have the same reactions to medications too....

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[Cocosurviving]

I hope everyone had a decent weekend and Monday. I have a follow-up appointment with my rheumatologist in May, and for now, I have one medication aimed at reducing inflammation.

The previous post asked about medications such as gabapentin.
In 2019, I was diagnosed with fibromyalgia. I immediately noticed the type of mediation commonly prescribed. I declined the commonly prescribed medications. I tried one RX of Flexeril and CBD under the direction of my specialist. Flexeril lingers too long in my body. CBD didn’t help at all. My rheumatologist then suggested
medical cannabis. I had a good experience with medical cannabis creams, but the jar didn’t last long.
I actually learned to roll joints, but I prefer edibles. Edibles helped with sleeping through the night. I’m changing occupations and surrendered my medical cannabis license earlier this year.

All in all, I try to take medication only when I feel it’s necessary; there are no other options, and it helps. I take one medication for my thyroid, one for inflammation that might be Lupus-SLE, and two injections for a rare illness. I take a lot of vitamins since I am immunocompromised.


Me and my teenage son take walks in the evening. I make sure to apply sunscreen in the morning, reapply in the evening, and apply mosquito repellent.

My pain has reduced, and I make sure to regularly stretch. I experienced muscle spasms a few times last week. I also drink a lot of water. I struggle with avoiding sweets, but I’m not giving up. Last summer, I took a trip, and my healthy eating habits took a nose dive. I am determined to turn things around.

Yesterday, I noticed signs of depression. A big telltale sign for me is procrastination: not making my bed, dishes piling up in the sink, dirty clothes on the floor instead of the hamper, etc.

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[Cocosurviving]

My week has been decent pain wise. Our weather is changing from hot to fall (cool temps). I make sure to take water when running errands.

My place looks better: dishes washed, and dirty laundry off the floor. I plan to clean both restrooms this weekend. One today or Saturday and the second restroom on Sunday.

I’m returning to college for a second degree in the fall. I also plan to work part-time. This weekend will be very busy to say this least. My son grandson is spending the weekend with me and my son. My son is a high school senior and definitely inherited my tendency to volunteer with multiple organizations.
This weekend he has volunteer commitments and a birthday party to attend. I’m applying for scholarships this weekend and being a taxi mama.

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[Cocosurviving]

I came across this topic on another thread: Fibromyalgia misconceptions and myths.

My experience:
I have tender points, experience muscular knots and muscle spams etc.
I have a hard time taking written notes and usually have to type out my notes.
I’ve tried mechanical pencils and added cushions to my ink pens. I plan to purchase a keyboard for my iPad to make typing easier.

As far as meds and treatments:

•Early on I tried a steroid injection once and it hurt way too much. I also know long term use can result in bone deterioration.

•I tried Flexeril it was too strong and lingered. My rheumatologist then recommended CBD and did a good job of creating a titration schedule but it didn’t help.

•Next I was recommended (same provider) medical cannabis. I prefer gummies and I could sleep through the night like a baby.

•I knew early on that medication and/or medical cannabis would not be my only solutions. My only health insurance is Medicare, which does not cover acupuncture or chiropractor visits (for Fibromyalgia). Luckily in my area massages are not expensive. We have a decent amount of massage businesses to select from.

•I also have a YMCA membership and find deep tissue yoga helpful for my overall health, mental clarity and to loose my stiff/achy joints.

I read a lot of articles from national fibromyalgia and arthritis organizations. My Mighty has good articles too and I like that they publish articles written by individuals with disabilities and chronic illnesses.

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[Cocosurviving]

Last week, I signed up for Ticket-to-Work through the Social Security Administration. My youngest son turns 18 this month, and my income will change. I need to at least work part-time. I am happy to report that my new HAE injection treatments seem to be working. My HAE attacks have slowed down a lot. I received hospital bills from my last few HAE attacks. Working will help me get them paid off.

I have an assigned vocational case manager. We had a phone conversation this week and discussed resumes. I have been dealing with a lot of anxiety over how to explain the gap in my employment history. My case manager explained that I should list volunteer work and explain during interviews that I took time off to raise a family. My kids are all grown, and I am returning to work. Being disabled is very hard, and I understand that it varies greatly from person to person, depending on the type of disability (disabilities) in addition to the severity.

I have a very close relationship with my youngest son, and that’s mainly because I started receiving SSDI when he was in fourth grade. He’s a senior in high school, and I still take him to school and pick him up. I have been able to attend all his school events, band concerts, band competitions, open house events, and parent-teacher conferences. I participated in school carnivals, bake sales, and helped chaperone events. I dropped him off and picked up him and his classmates.

I found a few articles that discuss returning to the workforce. I hope others find the articles helpful too.

•Stay-at-home-mom valuable transferable skills.

Just a moment...

•Finding a job/reentering the workforce after being a stay-at-home-mom.

Just a moment...

•Finding a job/reentering the workforce after a long absence.

Just a moment...

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[Cocosurviving]

Over the last two weeks, I have tried to donate blood to the Red Cross twice. Each time, my iron was too low. I reached out to my primary physician to report and explain other symptoms. I was struggling with fatigue and procrastination, and I could feel myself slipping into depression. My primary physician ordered labs and said low iron could trigger my depression. I’ve been eating foods containing iron and hope to not need another vitamin or supplement. I learned that iron is not part of the usual autoimmune disease lab panel. I don’t understand why, since vitamin deficiency is very common among people who have immune diseases, such as myself. The standard lab panel checks for vitamin deficiencies except iron deficiency.

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[Cocosurviving]

This week, I had two interviews. The second was the best fit, and I accepted the job offer. I’m waiting for my background check to clear.

My pain has been good this week. I did well this week by avoiding eating out and reducing sweets. I have been consistently drinking water.

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[lizardlady]

We've talked about so called "cures" for fibro in the past. Just heard this one. I don't know to laugh or scream about this.

Person is claiming to cure fibro through 40 days of fasting, only allowed to drink fruit juice. Oh, I forgot to add she only charges $2,200 to help cure you!

[Pflowers]

I don't know which is worse, the medical community itself or all these snake oil salespeople!

Don't trust any of 'em as far as I could throw 'em ...

Which isn't very far!

[lizardlady]

We've been dealing with a tropical storm the last few days. Changes in barometric pressure has my fibro going crazy. I have no functional brain cells with the fibro fog. Pain level is off the charts. Whine, whine, whine...

[Cocosurviving]

In June 2024, I signed up for Ticket-to-Work through SSA, and started working part-time.

In Aug 2024, I started working full-time with the goal of gaining access to private health insurance. I signed up for private health insurance this month, October, and my plan is much better than Medicare. My specialist copays cost half the price!!!!

I never thought that having a rare illness, Hereditary Angioedema, would help me land a job. It turns out giving myself IV infusions came in handy. I work in blood collections.

Lupus SLE: I received a second opinion on Aug 16th, 2024, which confirmed a second time that I have Lupus SLE.

Food and Wellness: My rheumatologist also recommended I adhere to an anti-inflammatory food lifestyle. I walk a lot for mental well-being.

Stress: My work schedule varies between first, second, and third shifts, including some weekends. Stress is definitely part of my life. I try to reduce my stress by planning ahead such as meals, laundry and running errands. I avoid “woe is me” family members. I also put a big focus on rest and relaxation.

Fibromyalgia: Last month I started regularly experiencing muscle spasms. I take Hydroxychloroquine for Lupus SLE. Because of my work schedule, I had to buckle down and make sure I don’t miss any of my medication doses. I also started back regularly using natural products that help with pain.

Medical Cannabis: I surrendered my medical cannabis license in February to prepare for returning to the workforce. That said, medical cannabis absolutely helped me. I used to use gummies at night to relieve pain and sleep well.

On Saturday, I completed a DRS - Career Planning assessment, which is a step towards returning to school.

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[lizardlady]

Pflower, do you have a supplemental plan to go with Medicare? My supplemental premium comes out of my soc sec check before I even get paid.. Alternatively, if you also qualify for Medicaid there are cost free supplemental plans.

[lizardlady]

I'm here to vent. Don't need any advice just need to whine a bit.

I live in Florida. We just got snacked by TWO hurricanes. Stress makes fibro and CFS worse. Prepping, living through the storm, then dealing with clean up has me beat down. I spent days helping the friends I stayed with clean up the mess at their house. Was finally able to get home a week later. Spent days working on clean up here. Finally Sunday I told myself it was not a race to clean up. Am working on prioritizing what gets done. Downed trees that blocked access to the property HAD to be moved out of the way. Half a tree blocking my front door HAD to be moved. My storage shed got creamed by a tree that came down. There were things in the shed I HAD to move to protect from the weather. Spoiled food in fridge/freezer needed to be tossed. Needed to pick up some groceries. Eat hurricane supplies for a couple of days til I could get to the store.

At this point fibro and CFS are kicking my butt. I'm so tired I feel drunk. Am trying to pace myself now. Still need to wipe down the inside of the fridge. A week with no power let some interesting bio experiments start growing. I need to clean out a spot in the barn for the stuff from the shed, then move the stuff. After that I will be cutting up downed trees until the end of time.

Thanks for listening. I really needed to vent.

[Pflowers]

I'm sorry the hurricanes impacted you so badly @lizardlady ...
________

To answer your questions, I don't qualify for Medicaid in my state, and the monthly premiums on the Medicare Supplement Plan (Plan G) are more than I can afford to pay for out of pocket each month.