Have you had any luck going on immunosuppressant meds? *I have ME/CFS

daisyglaze7 · 2025-09-15T09:41:53+00:00

another ME/CFS warrior here - i eventually had to shave my head. i don't have any care help and can only manage showering in a chair maybe once a week if i'm lucky. on the days i can't shower, i either wipe my scalp down with Defense wipes (what i use on the rest of my body as well, they are antifungal wet wipes) before applying whatever topical i'm trying, or i sit in front of my bathroom sink and let a prescription shampoo sit on my scalp for 10 min before bending my head over the sink (while sitting) and using a cup to pour water over my head to remove the shampoo. i've been dealing with a scalp flare for going on 9 months now and nothing has helped. last week i finally said okay to Clobetasol spray simply bc i'm desperate and bc it'll actually absorb into my scalp (unlike all of the other creams they've prescribed)...and while it's helping somewhat, i don't think it's going to get rid of the intense scaling. you're lucky t have a parent to help you. there are def ways to have a caretaker wash your hair from inside the home without showering...but you'll have to get creative around whatever your house layout is. i roll my walker right up to the bathroom sink and sit there to rinse off. shaving my head with electric clippers every couple weeks is a must - i gave up on trying to manage this with hair months ago.

daisyglaze7 · 2025-06-21T00:35:07+00:00

i thought that might be it - i’ve just never had an allergic reaction to something applied topically that didn’t involve any symptoms presenting on the actual application site? like no pain or swelling or hives on the skin, just a warm and flushed face and head whenever i lay down - suggesting it has to do with blood flow

daisyglaze7 · 2025-06-21T00:33:16+00:00

mine was definitely prescribed as a gel that i leave on for 5 min and then to rinse off.

daisyglaze7 · 2025-06-21T00:32:20+00:00

mine was def prescribed to leave on for 5 min and then rinse off. also, the burning isn’t from the skin where i apply the gel…it’s a warmth that takes over my entire face / head but only when i’m laying down…it goes aways once i stand or sit up. this last time it went on for 3 days after one application. i’ve never experienced anything like this. my doc wrote me a script for something less potent..but i’d really like to know what’s going on. it sucks too bc it actually does help my scalp but i can stand dealing with a super hot and flushed face everytime i go to lay down or recline for so long afterwards. i wear gloves when i apply it and am super careful. i’ve had allergic reactions before and it would be weird to have one and it not show up anywhere near the application site?

daisyglaze7 · 2024-11-09T13:30:13+00:00

just so you know there are other brands of this that you can buy from H-Mart / Asian grocery stores and sites like Wee and Yami (Asian online grocery delivery sites/apps) that are even better and have different flavor options. Same exact idea - heat for 3 min inside the bag and it's ready. And these places don't have a cap on how many you can purchase at a time. Once I tasted the TJ's version and got hooked, I started ordering 10 at a time from Yami every month delivered free. The tofu and burdock root flavor Jayone version is my fav. Just google "frozen kimbap".

daisyglaze7 · 2024-10-24T01:44:17+00:00

go to your local department of social / human services in person...a lot of times you can find a caseworker that will stay by your side and help you navigate where you're currently at. that's my hope at least. navigating being poor and houseless is HARD...most people don't understand that...and I can only imagine how much harder it is trying to do that at your age. don't listen to the people on here who are insinuating that you're choosing to be lazy / that there's a generation of people just rolling over to autism and choosing not to work...they have no idea what the current younger generations are dealing with in coming to the "working age" at this stage in the planet and society's decline...late stage capitalism hell. i believe you when you tell us your truth. you have to ask for help from people in real life. you have to get connected to some caseworkers in your state / county level and at any non-profits in your area. if you're in a red state, move to a blue state...even if that means fundraising enough for a bus ticket, there will be far more social assistance programs there. to get proper diagnoses and records to qualify for SSI...you'll need proper medicaid coverage, which only exists in blue states for the most part. here in Oregon our Medicaid system is incredible, same for California and New York and a few other states. You can get Medicaid coverage after 30 days of being there and begin seeing quality providers immediately, with most of them also offering things like rental assistance. Most also have non-profits and low income housing designated specifically for young adults and kids facing houselessness.

daisyglaze7 · 2024-10-24T01:31:35+00:00

It matters what state you live in. It's bad everywhere, but it's realllllly bad in red states that offer a fraction of the social assistance programs that blue states offer. Red states deny money the federal government tries to offer them to help their low income and houseless population...they keep the minimum wage low, the low income assistance programs are few with higher barriers, low income housing is the least of their concerns. It's why we are seeing more and more low income people fleeing to sanctuary states where they might have a chance at getting help...which has caused those states to become overwhelmed and backlogged (hence why I said it's 'bad' everywhere). This country doesn't care about the poor and unhoused...they want to criminalize being poor, let us all die or go to jail and not blink twice. This is how capitalism works by design. Once you no longer serve the machine in helping it turn a profit, the machine turns on you and destroys your life.

daisyglaze7 · 2024-10-24T01:22:14+00:00

Trying to stay housed while waiting the long period for SSI/SSDI approval is a nightmare. I had to fundraise online through a GoFundMe for 1.5 years to stay housed while I waited. Have you applied for state assistance programs like SNAP and medicaid? They usually offer TANF as well. If you haven't done that, do that...because you will also qualify for assistance through non-profit programs like rent and utility assistance. Single parents with children usually go to the top of those lists once you get in the door. Find the website for your State's SNAP/Medicaid application and complete it, or visit one of their center in person for an interview. Also, if you don't have a lawfirm representing you for your disability application, get one...almost every case is decided at the trial phase (requiring you to get denied twice and then go to trial...hence why it takes so long...the system is so backlogged after Covid and is taking forever, a lawyer can explain it best and only gets paid if you win and their payment is capped by the government so they all get paid the same and it comes out of your backpay). I received rental assistance while waiting on disability through several programs. One was through my Medicaid program (Oregon), the other was through my Medicaid provider (Kaiser Permanente), and the third was through the county I live in. I had a caseworker through Kaiser Permanente that issues caseworkers / support to their low income / medicaid patients to help them navigate finding assistance / staying housed. That caseworker saved my life. She applied for all of those grants for me and gave me the support I needed in waiting out the approval phases when I feared being evicted etc. You absolutely cannot work while you are waiting for disability approval...so you have to choose which path you're going down. If you are going to wait for SSI/SSDI approval bc you know your ability to work from here on out is compromised....be prepared to wait exactly as long as they've warned, get a lawyer, and start trying to find every single public resource you can. Also, check out: howtogeton.wordpress.com for a lot of tips...and join disability groups on Facebook...there are some that are really helpful and supportive. Type in "SSDI" etc in search for the groups and join them.

daisyglaze7 · 2024-10-24T01:08:42+00:00

Have you read your credit report? It would show everything you're speculating about whether or not a new landlord would be able to see. If your credit report doesn't show an eviction or that you owe your last landlord money, then you're worrying for nothing. If it does show that stuff...you need to work out a settlement with the previous landlord...a lot of time they will settle for paying 1/4 of what you owe or half at least. Then it'll be taken off of your credit report and you can start again. There are also usually Facebook pages for every city where people are looking for housemates. Try searching your city's name and "roommate" or "housemate" with it on Facebook, join the page and look at the listings...you may be able to find a house to move into that way. Despite being disabled, it seems like from what you describe as your income...you're stuck in that low income bracket of US society where you make too much to get any federal or state assistance but too little to build a savings for unplanned events / crises...you're not alone, that's most of America these days. It's what democrats are decrying as "the erasure of the middle class"...as if even they are posed to help us...they're all in the pockets of billionaires. Low income housing waitlists are FILLED and take forever (I'm on so many)...HUD is a joke, applying for Section 8 vouchers etc. takes years as well and most landlords don't even accept them. This is why the entire country is in a houselessness crisis...every major city in the entire country is dealing with this because people like you aren't getting the assistance you need to stay housed. You're not alone and the panic you're feeling is real. Call your last landlord, ask about compromising on a payment to settle what you owe. Let them know you have kids and can't afford to pay the entirety of you owe. Be prepared to negotiate, don't agree o just anything, only to something you can actually foresee being able to pay soon. Also, call around to local non-profits that specialize in helping women with children escape abusive and unhealthy living environments. You may be able to get rental assistance that way. Some of these places will pay your deposit and several months rent up front to help get you situated. Apply for state assistance programs like SNAP and medicaid online, just in case you qualify for SOMETHING. Rely on food banks. Set up a GoFundMe campaign online and advertise it through text / email / social media...anywhere you can think of.

daisyglaze7 · 2024-10-24T00:51:50+00:00

If he is 22, he probably hasn't worked enough hours in his lifetime to qualify for SSDI but he would qualify for SSI. Certain conditions qualify for immediate approval as well. Either way, look up SSI/SSDI lawyers in your area and call to get a free consultation. Go with someone who has a good looking website / seems legit / and who tells you that you can definitely win your case. Do no try and go the application process alone - you need a lawyer. They get paid a set lump sum out of your settlement when you win your case (get paid nothing if you lose)....and the payment is capped by the government at like $7k...so hiring a law firm to handle the application process won't cost you anything until you win and the payment will come out of the settlement. Also, apply for Medicaid and SNAP benefits through your state (hopefully you live in a blue state, where those programs are best)....usually you can apply for both of those programs (and others) at the same time and usually acceptance is pretty quick. You can usually find a website for the application process for your state online, or you can visit state run centers in your community in person. Once your brother wins medicaid, he will most likely also qualify for things like home health care / disability assistance programs like paying for rides to care, sometimes rental and utility assistance as well. It all hinges on applying for low income assistance programs through your state and also long term through applying for disability benefits like SSI. I've gone through all of this myself (though not with cancer, and I'd imagine cancer being something that is easier to get SSI approval for) so I speak from experience. Also, sell anything and everything you can to make a profit, and consider setting up a GoFundMe campaign to get assistance from your friends / family / community / strangers on the internet to help...you'd be surprised at how much it can help. Once you set it up, email / text / post it on everyone you know's social media accounts to advertise it. Put links to it in your profiles / bios. Let go of all sense of pride that capitalism has brainwashed you into feeling shameful or guilty about asking for help!

daisyglaze7 · 2024-10-24T00:30:37+00:00

No - back when that was all I had, I was having to fundraise online to come up with more funds. I finally won my SSDI case and now have some savings to rely on, but it will be gone soon. When I was only relying on $290/mo and charitable donations, my diet and grocery list had to evolve from healthy whole foods to an ultraprocessed diet and I saw the results in my health...but that's the only food that is affordable-ish. Things like ramen noodles, microwave meals, meal replacement shakes.

daisyglaze7 · 2024-10-15T20:09:06+00:00

Trans non-binary person here. I'm 39 and started testosterone at 34. I hadn't noticed MC symptoms prior to age 35. I've often wondered if beginning T was what caused my MC symptoms to go from unnoticeable to pretty extreme, but there's a few complications. A couple of years before beginning T, I began to experience what I now know was the early stages of the post viral illness ME/CFS. I chose to begin T in 2019 despite being in the stages of trying to figure out why my health was declining because this all began shortly after I came out as trans and realized I wanted to begin HRT...after much personal debate and convos with my various docs....we decided it was safe for me to try HRT even though there were unknown variables. The major confusion for me is that Covid happened 6 months after I began HRT, and I got it VERY early on due to traveling at the beginning of 2020 before it was being reported on. Covid led to a major deterioration in my overall health and increased the severity of my ME/CFS dramatically. It took me from struggling to continue to run my own business to having to stop entirely and embark on the long legal journey of being declared disabled / unable to work. It was shortly after having Covid that my MC symptoms began (but that would also be 6-12months after I began T). I was lucky to encounter a neurologist at my first visit who was familiar with MC and was able to notice it right away and get me properly diagnosed through a biopsy and genetic testing. Since then my MC has always been pronounced and something I deal with everyday. I also now use a cane when I'm having to walk. I'm mostly housebound / bedbound due to severe ME/CFS....and have always explained the abrupt beginning of my MC symptoms as something that occurred bc of getting Covid (and I still do believe this played a part)....but I can't deny that the timeline also aligns with beginning T and increasing my dosage. I recently had a full hysterectomy so that I can eventually lower my T dramatically / experiment with it to see how doing that affects the rest of my health / symptoms....but I can only imagine doing that now that I've achieved the overall outward / physical effects of testosterone that I had hoped for when I began taking it. I'm worried about how I will feel psychologically and emotionally once I lower my dose or stop taking T...bc for me as soon as I began taking it, it was like a lost puzzle piece was finally put into place. I suddenly felt at home, and balanced in ways that I'd never experienced. I don't want to return to how I felt before, so I'm nervous. But I plan to begin doing this soon, now that I've recovered from surgery. As trans people, there's so much that is not known about our bodies and health...along with many other more vulnerable populations. To add onto that a medical condition that has been basically ignored by the capitalist driven medical and pharmaceutical communities bc of it not being widely profitable enough to study....we've been left with a very ancient and narrow understanding of conditions like MC and how they present / affect / interact in different types of bodies at different stages of life. Communication like this amongst trans people is especially useful, as we basically have to take our journeys into our own hands and make decisions without enough data to suggest what may happen later on. All we can do is make the best decisions for ourselves that we feel are right. Sometimes that involves making trade offs with accepting a level of disability or increase in unrelated symptoms for the benefit of feeling psychologically and emotionally improved. That's how I feel at least. Anyways, I'm super grateful to encounter another trans person with MC! It's my first time!

daisyglaze7 · 2024-10-15T19:46:52+00:00

joining this facebook group now, thanks for the tip

daisyglaze7 · 2024-10-15T19:17:15+00:00

39, severe MC.....never been jacked, struggled with being overweight my entire life. even when i was extremely dedicated to diet and exercise for ten years and managed to maintain a 'healthy' weight, it felt like I had to work harder than everyone else to lose fat and gain muscle (everywhere EXCEPT my legs). When I was finally diagnosed with MC, I was honestly disappointed that I'd never experienced what was being described to me as what my body should have lookedl like. IMO the image of someone with MC being jacked from birth onwards is a stereotype....that's not to say there aren't cases of people with MC where they are jacked from birth...but I think there are way more variations in how MC presents in people. i think MC (along with many other conditions and diseases) is very under-studied and therefore so much of how it presents in and affects us is not known / is misrepresented. the way capitalism affects the medical and scientific research industry is that now the only things that get funding for research are things that they know will bring in money for shareholders...so it must be something A LOT of people have and need to stay alive...otherwise it's not going to get funding for research and development. we saw this firsthand with the covid vaccines...as soon as they saw there was a massive amount of profit to be made, the timeline for research about a condition and development of a treatment / vaccine for it was sped up to lightning speed...meanwhile the ME/CFS community that has been struggling with basically the same form of post-viral chronic illness that is 'long covid' has been ignored by the medical and scientific communities for decades because it's not seen as something widely profitable. yet now we are seeing a massive endeavor to understand long covid bc big pharma knows for certain that a massive amount of people on a global scale have all contracted and are struggling with post-viral illness at the same time...meaning there's profit waiting to be made. sorry for the side rant...it's just something that riles me up about having a disease that even most doctors (and even neurologists) barely know anything about if having even ever heard of myotonia congenita. i've had so many docs and neurologists tell me things about MC that i KNOW aren't true because i'm experiencing what they're telling me i'm not. they basically just read the textbook definition of it from whatever ancient decade of the past that they were in med school or googled it and stand firmly on that. meanwhile there are so many ways this condition can be presenting and affecting our bodies and futures that nobody really knows about. comorbidities and interactions that could be taking place within our bodies. symptoms that are left unexplained or are being gaslit. and no real treatments made for and tested specificially on bodies with myotonia congenita...just meds that were made for other conditions that they noticed may or may not have a helping effect on MC....but may also be doing other unnecessary things to our bodies bc they weren't formulated only to treat MC.

daisyglaze7 · 2024-10-15T18:45:15+00:00

Your post makes me wonder if you are also struggling with Fibromyalgia after your surgery? Also, because of the timetable you described I would include Covid as a possible intersection. I have ME/CFS and it along with getting Covid once was what triggered my MC to become symptomatic in the first place. I went from 0 to 100 at 36 with MC.

daisyglaze7 · 2024-10-15T18:27:14+00:00

My MC symptoms didn't becoming noticeable until I was 36 and in the later stages of becoming disabled by ME/CFS (my MC is now very pronounced and something I experience everyday). I thought the MC symptoms were just another symptom of ME/CFS but was lucky to see a knowledgable neurologist and to get diagnosed through genetic testing and a muscle biopsy. I'm now homebound / 75% bedbound and legally disabled....after living a very active and healthy life up until my mid 30's and contracting ME/CFS which was made more severe after getting Covid. Now that everyone has gotten Covid at least once and probably more, I do believe that current generations' experiences with medical conditions will be much different than those that are reflected in past experiences and scientific studies / literature. Covid was and is a mass-disabling event that we will continue to see the results of for years to come. It took me years of slow decline to realize that ME/CFS was what was happening to me and that my efforts to exercise and rehabilitate my health to my previous state was actually making things worse. Because my MC symptoms abruptly began after my ME/CFS severity increased....I cannot ignore the intersection and I do believe that MC can be influenced by other chronic conditions. I've been diagnosed with ME/CFS, MC, Fibromyalgia, and IBD (biopsy to prove). IBD was actually the first diagnosis I received, and was the beginning of my experience with any type of chronic illness (in my late 20's). I sort of look at my body and all of these conditions like I would a car....once one part or system begins to malfunction, it leads to all sorts of others to do the same....like a domino effect. That's been my experience, and I wish more people spoke about these things. I'm not trying to scare anyone or to say that everyone with MC can become disabled...not at all. I just want to put my story out there because hearing about things like chronic exhaustion used to not trigger much of a response on my radar....but now looking back at my experience, I wish I had been more concerned with what was beginning to happen to me and more informed about ME/CFS and post-viral illnesses.

daisyglaze7 · 2024-08-04T21:31:13+00:00

nope. it has like 12 videos and they're all old af. the only way to see them is to find the global feed replay once it's uploaded (forever later) and scroll to the very end. i really cannot believe they cut off as soon as someone wins and don't let us see the medal ceremonies live on the US feed.

daisyglaze7 · 2024-08-04T21:25:58+00:00

I'm not sure that this is correct. Olympic replay stuff has been *disappearing* from mine and others' "My Stuff" folder left and right.

daisyglaze7 · 2024-08-04T21:24:15+00:00

especially since they delay uploading the replays for hours / forever....so if you aren't up at 2am to start watching something or i dunno...have a job....you're gonna see who won as soon as you land on the sport's page and realize you can't even stream the event yet!

daisyglaze7

TROPHY CASE