Ready for some GOOD news?
My doctor appointments are going very well and I've found an amazing rheumatologist! There are still many MANY more appointments needed and tests to run, many of which will not be covered by insurance.
But even better than that . . . I'VE FOUND A TREATMENT COMBO THAT WORKS! (at least for now). It's also Doctor approved!
1. TOTAL and COMPLETE REST as much as possible - this means being in bed or a reclined chair for about 23 hours EVERY day
2. taking all medications as prescribed - including medical marijuana
3. Continuing mental health treatment
4. "Pacing" with a heart monitor
5. proper nutrition and hydration
The bottom line is - activity makes me worse, REST helps. I am seeing DAILY improvements in all aspects of my health. There are good days and bad days, but the trend is getting better with every baby step.
Confused about how activity makes things worse? ME too!
Here are some great (scientifically sound but accessible) articles and resources from people experiencing the same things I do.
As always donations are needed and highly appreciated as I am unable to work and government assistance is still months away.
If Gofundme isn’t your deal, here are my health related Amazon wish lists, my Ko-fi, and my Paypal. Eventually I’ll be able to launch a website, an Etsy shop and a Patreon page for art!
Amazon: General wish list , Art and work supplies, Health/Medical
Sending love to all,
I have now been bedbound/housebound for 4 MONTHS due to debilitating fatigue and pain. I rest for about 17-19 hours a day. I am still unable to work. I have $0 income and am forced to completely rely on my boyfriend and small donations from family and friends This is not normal. But it is my normal.
I have a rehumatology appointment today! I'm really scared about going out/to a hospital but that's nothing new. Hopefully this leads to some more answers. All medical tests so far have come back normal.
Please share and donate! I want to live, I feel like I deserve that much.
P.S. PM me if you want my address
Why is this seemingly simple thing so hard for so many people? Buckle up folks, this is not going to be a fun ride.
I’ve been pretty absent from most of your lives recently and for that I want to apologize. You deserve an explanation or communication but my fear kept me from reaching out and for that I am truly sorry. I was planning to share this with everyone over the holidays, but I couldn't bring myself to share this bad news during the festivities.
For several years now I have been struggling with an invisible mystery illness, while still trying my hardest to appear and be functional. I’ll skip the long story of the process and elimination and focus on the present, although I am happy to provide more details if anyone is interested. These changes in my health are quite extreme, and will seem very sudden to many people. I can understand feeling confused and wanting to see how they developed.
So where am I now? I have 3 solid diagnoses: Generalized Anxiety Disorder (GAD), episodic major depression, and fibromyalgia. I am currently waiting on appointments to be screened for other conditions as well. My symptoms vary greatly in severity and type from day to day, hour to hour, and even minute to minute. Some days are better than others, but right now almost every day is a “bad day”. My DAILY symptoms, aka symptoms I experience every single day, have become debilitating.
1. PAIN everywhere ALL the time- muscle pain, joint pain, bone pain, nerve pain, you name it and I’ll have pain in it.
2. Fatigue - there aren't enough words in the English language to describe how terrible this symptom is. It’s like having the worst flu of your life every day. Rest, even deep restorative sleep, offers little relief. This symptom has been getting worse over time and is incredibly difficult to manage. The best way to describe it is feeling like the body is slowly shutting down or in “low power” mode.
3. Depression - considering symptom #1, I think this one is pretty self explanatory. I am not currently suicidal, I have coping skills and a safety plan in place. Yay! But that doesn’t mean I don’t still struggle with suicidal ideation, especially when death begins to seem like a release or “way out” of these terrible symptoms.
4. Anxiety - I’ve always been an anxious person and have been in therapy for years to learn how to manage it. Unfortunately the causes went from “oh no my crush doesn’t like me,and I can’t stop thinking about it” to “all of my hopes, dreams and plans just got shattered by this illness that has no cure.”
5. Brain fog and memory problems - what was I going to say about this? Honestly though, this has made functioning incredibly hard. Memories of face to face conversations seem to be affected most, although some long term memories have also begun to fade.
6.. “other” symptoms - I could literally write pages on all the “other” symptoms I experience but instead I’ll just list a few. Dizziness, lightheadedness, nausea, temperature intolerance (aka being hot or cold triggers other symptoms), IBS, sleep problems, recurring nightmares, chronic muscle tension, numbness, digestion problems and more.
My current activity level is very low. I am currently housebound/couchbound and only able to do a few physical tasks each day. I cook and clean when I can but Rafael has had to take the bulk of the house’s responsibilities on himself. Thankfully I am able to do more mental and emotional work but that daily limit is still MUCH lower than a “normal” person’s. Any kind of physical, mental, or emotional strain can backfire and make symptoms worse (sometimes permanently).
I’ve tried pushing myself through these symptoms by “powering through” and “putting mind over matter”. I was able to hold a “normal” job for several months but the symptoms just kept getting worse. Eventually I had to drop to part time, and eventually I had to quit.
I never realized how independent and stubborn I am until I got sick. I’ve been putting off asking for help for a year, a year! I’m currently writing it and I still don’t want to do it. Ugh, life has some fun ways of teaching us about ourselves.
UUGHGHHHHHHHHHHHHHHHHHHH sigh ok, I’m going to just push through and do this.
I need help. Worst 3 words ever.
My body is falling apart and my mind left a long time ago. I’ve done everything in my power to help myself, and I still am. But it is not enough. Disability has stolen my independence, and there’s nothing I can do about that now.
I guess the best way to go about this is to list what I’m currently working on, and how you can help. I don't want to blindly ask for money, or for you to see this as an obligation. I want you to see that my fighting spirit is not broken. I want you to see how you would be investing in my life.
So . . what now? Well that’s a good question.
I have a to-do list as long as my arm but thankfully they all boil down to simple things. I need help with money, advice and support, and knowledge of resources.
I’m currently applying for Disability/SSDI and SSI, implementing a treatment called “pacing” with a heart monitor, following a strict elimination diet to identify food sensitivities, researching mobility aids, and preparing for possible bed rest. If you have any experience/knowledge/advice about these things could you share it? Thanks :)
So why do I need help with money? Doesn’t social security take care of disabled people? Unfortunately, America’s disability system is BROKEN. It’s a horribly complicated process that includes long waits, loopholes, appeals, and even court dates. I am applying now, but who knows when or even if I can actually receive benefits. Some disabled people I know have waited YEARS, for approval. And once you get on it the slightest misstep can kick you off.
That is why I’m asking for help, and why I’ve decided to become a self-employed artist and grant writer.
My abilities are greatly diminished, but I’m still the same person I was before getting sick. I want to use whatever ability I have to help others (and myself) have a better life. I want to spread love and peace and beauty however I can! But . . . I need to eat and pay bills, not to mention the mountain of new and upcoming medical expenses.
Can you help me pay for living expenses and medical treatments by donating and sharing today?
If Gofundme isn’t your deal, here are my health related Amazon wish lists, my Ko-fi, and my Paypal. Eventually I’ll be able to launch a website, an Etsy shop and a Patreon page for grant writing and art!
Amazon: General wish list , Art and work supplies, Health/Medical
Tl;dr: I have become disabled, have been diagnosed with anxiety, depression and fibromyalgia and am experiencing symptoms that are similar to MS and other “more serious” diseases. I’m currently seeking treatment from traditional and alternative medicines but waiting lists are long and specialists are hard to find. Also everything is SO expensive, especially because insurance doesn’t cover a lot.
Because of this I cannot work. I tried my hardest to maintain a full time and then part time office job but in the end it made my health exponentially worse and I am now housebound.
I’m asking for help - financial, advice, support, or whatever you’d like to provide. I still have many strengths and skills in my arsenal and am trying to build a sustainable income from that.
- Jeff Fox
- Jeff Fox
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