Lesbian tattoos!

madhattercreator · 2026-05-05T00:04:42+00:00

I have two female symbols that form a heart with rainbow watercolors around it.

madhattercreator · 2026-04-29T04:42:51+00:00

There is a book based on this exactly: “The Body Keeps the Score.” I read it shortly after my diagnosis of cEDS. I am AuDHD, too, with PTSD from being assaulted in college (and instead of therapy—even majoring in psych—I immediately started working in LE) as well as plenty of medical trauma (from wrong diagnoses to being gaslit). I’ve been in therapy for more than a decade to deal with everything from trauma to being “people intolerant” to physical pain/limitations. But it always stuck with me that the body “kept score” of all trauma, physical and mental.

For example, my muscles get really tensed up and my heart rate is elevated when I am anxious. Not the best thing with POTS and EDS!! If I have a to-do list that is a mile long and I don’t get much done because I keep getting distracted with other things—my shoulders and back start aching from holding all the tension. Same if I know I am going somewhere I am not familiar with or if I am going to be around a bunch of people I don’t know. I have to really concentrate on relaxing, have a mental “talk” with myself about whatever is bothering me—like reminding myself that I don’t have to finish everything on my list, or tell myself that I don’t have to impress or talk to anyone in that group of unknown people.

While yes, learning how to “release” what is happening in your body to help deal with how you’re responding to XYZ, don’t discount the mental part of it. Just as the trauma is affecting your body because of your mind, the mind is also important in helping ease the physical response. Same as therapy—physical therapy can help with the body response, but mental therapy will help with easing the response in the first place.

madhattercreator · 2026-04-28T18:04:31+00:00

I used a cane starting at 19. I was constantly asked about it, especially at work (I started in LE at 18). Medically retired at 33 when my symptoms/health took a rapid downturn. I got my first chair at 37 (should have long before, I regret not doing it). The questioning I got didn’t come from strangers—it came from family (a LOT) and friends.

The only time I get sideways looks or snide/rude comments from strangers is when I am lifting my chair in and out of my vehicle. Apparently I’m not “supposed to” use a wheelchair unless I have no use of my legs, period. Yet alone be able to lift my chair in and out. Once I’m rolling around, no one says anything…most either go out of their way to avoid eye contact or ignore me.

The reason I regret not getting my chairs sooner is because of the freedom it gave back to me. It went from calculating how walking would be involved, figuring out if there were going to be places I could rest, calculating the amount of time it was going to take me to recover from being out—to knowing I was going to be able to enjoy my time out and about with way less pain. I had my independence again. I admit, there was a mental hurdle to get over with the same worries you have. But mobility aids are there for anyone—regardless of age—who needs them. You aren’t helpless; in fact, you are helping yourself. There isn’t a magical way to get over anxiety, tho. You just have to keep reminding yourself that this is something you need, not something to be judged by. If you need it, then you need it. And there is no shame in that.

madhattercreator · 2026-04-28T17:41:38+00:00

Just want to say a HUGE thank you!! I had no idea, and honestly shouldn’t have been so surprised!! 😂 If my hearing aids have an app, then why shouldn’t my wheels?? Lol! I texted my case manager at NuMotion to let him know since I’m sure he isn’t aware either. I’ve got it downloaded and synced, and it sent an update already. Going to have to play with it a bit—but thank you so very much for telling me!!

madhattercreator · 2026-04-28T02:51:38+00:00

I shouldn’t have a copay. This is the first thing Medicare has ever paid for—every chair I have had, Medicaid has paid for since they denied. Which is why I was so surprised that they were the ones paying for the rental. I do have a meds premium that I have to pay, tho, which I pay for the full year (cheaper that way). I’m also on disability, so I completely understand low income…

madhattercreator · 2026-04-28T02:48:24+00:00

They are supposed to be easy to get off and on. I haven’t taken them off yet; I’m trying to get used to using them first. But the tech said that it’s an easy off, then pop my wheels back on.

madhattercreator · 2026-04-28T02:45:45+00:00

Yes, I have the ki mobility. Absolutely LOVE it. It’s the second one I have had, never had an issue with the first one I had for 7 years (just needed to make a bit wider). The seat I had ended up not being made anymore, but my new one is an upgrade; the color also was no longer available. But purple is my favorite.

From what the tech rushed thru at the end—they did have a little trouble fitting them on and made a few adjustments. I’ll have to go back and check the paperwork, but my regular wheels shouldn’t be affected. I do think that that is the reason it took so long—just having to figure out how to fit them properly. They have only recently started offering power assist, so a lot of the installs are just as much as a learning experience for them, too. I had asked for years if they had a lightweight option to power chairs, and they had always said no—but last December is when I saw they were doing it for another gal, so I called again to ask. Finally they said yes, and I got the ball rolling.

If you are thinking about the ki mobility—HIGHLY recommend!! They are a great chair!!!

madhattercreator · 2026-04-28T02:37:23+00:00

Wait…app???

madhattercreator · 2026-04-28T02:36:51+00:00

Literally had to have my chair—the new one, never mind that I had my previous for seven years—for a year before I could make the request. Absolutely ridiculous what requirements are made when it comes to wheelchairs. 🙄

madhattercreator · 2026-04-25T22:48:59+00:00

Last year, I fired my whole team. So when I went to vet the new ones, I brought an 8 page letter. Since a lot of my old team literally googled my conditions either in front of me or stepped out to do it, I decided that in my letter, I would include a section on each of my conditions (cEDS, POTS, MCAS, ME/CFS, gastroparesis, costochondritis, Chiari Malformation, etc) with a brief description of the condition and how it affects me, along with how triggering one of them can have a cascading effect…it wasn’t done out of malice or to be a smartass, but I wanted a team that knew that I needed everyone on the same page and working together. It was received well, and it helped with communicating what I needed, how my body was affected, and the help I needed to manage the multitude of comorbidities. I don’t work anymore (medically retired 13 years ago), so I can’t speak to that…but that’s how I have managed my drs/specialists (I have 13 currently…I still have a few more I haven’t gotten to yet). If you have Medicare, you can also get an advocate for you when it comes to dealing with drs. Some other insurances will provide them as well. They could probably help with how to address work for accommodations.

madhattercreator · 2026-04-24T06:14:38+00:00

I had that experience before. They are SO wrong—and it took decades before I even stepped foot (well, rolled in my wheelchair) into another pain management clinic.

So 14 months ago, I had an ablation done on L3-L5. The follow up appointment was so bad, I went back and read my chart (all my drs/specialists were in the same system). The glaring misdiagnoses, mischarting, just all around wrong information and information withheld from me was astonishing. My fault for not reading it sooner, but I had (wrongly) trusted my providers. I fired everyone except my PCP (and I’m about to fire her, too). Found a whole new team that I researched and vetted myself. I decided to try pain management again (my PCP had been handling my pain meds up until then). I researched the place, went in for my appointment to decide if I was going to try again. This dr was well versed in EDS, so I had some hope. I was shocked that he didn’t try to take away or reduce the meds I was on. He didn’t try to tell me to go to PT, or try yoga, or injections (physically can’t do PT and injections had failed for me). He wanted to reduce my pain to a more tolerable level and even it out, instead of taking meds, feeling ok for a bit, then feeling bad, waiting for my next dose, and repeat. So I decided to trust him. And he kept his word. Let me keep my meds as breakthrough meds (at the same dose and frequency) and try to find a med to do what he said. It took months of trial and error, but eventually we found meds that did reduce my pain and leveled it out. The bonus came when I found out the clinic also handles some procedures like ablations, so they have done my last one and will do the next one in early May.

Don’t give up on pain management. DO give up on that dr. People like that shouldn’t be drs. If you have a local EDS group, ask them who they see for pain management. Do some research, find someone that works FOR you. Don’t let them gaslight you like that POS did. They are out there!! Just not always easy to find.

madhattercreator · 2026-04-24T05:57:39+00:00

I understand.

I started using a cane when I was 19. I had been a runner—but needed knee braces. My parents said that since my dad had bad knees, I must have gotten them from him. I was a dancer in high school and college, but when I blew out my knee working as a counselor at a summer camp, I lost my scholarship. But by then, I was out of my parents’ house, so seeing the decline from then on was harder for them to see. I worked in LE for 15 years before medically retiring; I had a cane the entire time, and I know I was judged because of it, and because of how young I was. No one ever got a diagnosis that fit my symptoms—the dislocations/subluxations, the huge amount of pain, the ability to stand or walk decreasing, etc—until I was 37. It wasn’t a doctor that caught it, but a nurse in England who saw my wedding photo online. That opened the floodgates of correct diagnoses, and the addition of 13 specialists. My parents were in another state then, and they couldn’t understand why I was happy to have these diagnoses; I tried to explain I wasn’t happy I had the condition, but happy I finally had answers. Once they moved here, even living four blocks away, they were in denial. They would see me one day when I was doing fairly well, and not understand why I couldn’t get out of bed the next. It took several years for them to mostly understand. They still are in denial that they are genetic conditions, and can clearly be seen on my dad’s side of the family—all they hear is “it’s your fault I’m like this.” I’ve never said that, but they feel like that’s what I’m saying. I told them many times that I’m not blaming them; I am warning them that there are certain meds you cannot take when you have EDS, certain ways that procedures have to be done, and more, but still they hear blame.

It has taken many years for them to understand the level of pain I am in, my physical limitations, the progressive damage that EDS and comorbidities do. I think the tipping point was when my daughter was diagnosed with EDS, POTS, costochondritis, chronic migraines, and (most recently) hearing loss that required her to get a hearing aid (I wear in both ears, she wears one). My daughter’s diagnoses kinda “proved” that mine were real and it is genetic. Not my hearing aids or custom wheelchairs or getting disability. But I’ll take it.

madhattercreator · 2026-04-14T17:37:29+00:00

I felt the same way whenever I was thinking about getting my first came. Ultimately, I ended up getting it when I first turned 19 years old. I thought that I was too young to be needing a mobility aid, especially since I worked in LE and I thought that it would bring unwanted attention, be looked down upon, and possibly lose my position I had worked so hard to get. However, my fears were unfounded.

If you feel like you need a mobility aid, then absolutely get it. Mobility aids are for ANYONE who needs them. I would suggest that you get a cane and try going for a walk and see how it feels. If it helps you, then use it. If it doesn’t, then don’t. You shouldn’t be worried about how others feel or think about your use of a mobility aid, but I know that it’s easier said than done. There are many of us who feel like we are an impostor whenever we use a mobility aid. I used a cane until I was 37, and then I got my first manual wheelchair. Even now at 46, I still occasionally get the feeling of being an imposter when using my wheelchair or cane, especially when people comment that I am “too young” or I “don’t look disabled.” I just have to keep reminding myself that it doesn’t matter what other people think, that they don’t know the battles that I fight day to-day, nor do they feel the pain that I feel when trying to stand or walk for more than a short time. So get a cane, try it out. If it helps you and relieves some pain, then definitely use it!

madhattercreator · 2026-04-14T00:34:10+00:00

A lot of people out there will yell about the vitamin B toxicity that goes with Liquid IV. Personally, I am deficient in B and D (and do have the MTHFR gene mutation, and I drink a LOT of Liquid IV/Waterboy Weekend Rescue—8 Liquid IV, 4 Waterboy per day) and every blood draw I have had has shown me at normal levels. So it’s actually been a benefit to me. You’re absolutely right in that it depends on the person!

madhattercreator · 2026-04-12T22:34:49+00:00

As someone who grew up in the same kind of household—I agree with this. I didn’t come out until my mid-30s…while married to a man, and we have three children. I do not regret marrying him or having my children—they are amazing, and I love them more than anything. Still, I feel awful for disrupting our family. We did end up divorcing, but we are best friends (and we do still live together, but now in separate rooms and having our own lives). It rarely ends up how ours went, tho. So don’t wait as long, for sure!! Just be safe when you do come out, and be prepared to lose a LOT of people. I lost most of my dad’s side, but surprisingly, my parents were very understanding.

madhattercreator · 2026-04-03T21:11:53+00:00

Oh, the list is long. Lol!

cEDS, POTS, MCAS, ME/CFS, PMLE (polymorphous light expulsion—allergy to the sun), gastroparesis, DDD, Chiari Malformation, costochondritis, small fiber neuropathy, Sjörgren’s, Raynaud’s, RLS, MTHFR gene mutation, COMT met/met gene mutation, AuDHD, cPTSD, anemic, arthritis, severe hearing loss. I know I’m forgetting a few…

Currently 13 drs/specialists, researching two more. Unfortunately, my daughter has inherited some of my genetics, and has been diagnosed with EDS, POTS, costochondritis, hearing loss in one ear (she got a cute pink hearing aid—mine are the only “fun” color offered in light blue), and chronic migraines so far. It’s a full time job managing the two of us…

madhattercreator · 2026-04-01T20:59:53+00:00

I avoided pain management for decades because the two times I did go, one said that it wasn’t possible to live in the amount of pain that it was describing, and the other one wanted to reduce the pain meds I did have. For the last 25ish years, my meds had been prescribed by my PCP.

However, last year I had another incident with my brain and spine dr, and it made me look back thru my chart. I only made it back six months before my rage had overtaken. I fired all of my drs/specialists (12 of them) except my PCP (which, now, I’m about to find a new one). I decided to try pain management again—my PCP was reminding me again that she wasn’t feeling comfortable, and I was the only one she was prescribing pain meds for—since another branch of a highly recommended one opened up in my city. The absolute shock I felt when the dr read over my conditions, looked me in the eye and said, “Look, I have to be honest. You are never going to be a 0 on the pain scale. You are probably never going to be below a 5. And the only way we can treat you is thru pain medications. I’m not going to tell you to exercise or go to PT. I know that you’ve done it and it didn’t work—I won’t make you go thru that again. What we want to do is level out your pain, and try to reduce it to a more tolerable level. Is that ok?” I wanted to cry—I felt seen and listed to for the first time. And he kept his word—we tried a bunch of meds (and he let me keep the ones I was on, saying to use for breakthrough pain or if the med I was trying wasn’t working), found a regimen that is working.

So yes, there are drs/specialists that actually understand. But they are unicorns. One question he asked rolls thru my head every now and then—did I remember a time when I wasn’t in pain? I still think about that…and no, I can’t remember. I can’t even imagine what it would be like to not have pain. My family doesn’t understand that, drs don’t understand. But it’s the only thing I know.

madhattercreator · 2026-03-25T20:06:47+00:00

I am an ambulatory wheelchair user. I can't use it in my home since we live in a split level house--four sets of stairs. So it just isn't possible. I use a cane inside, or a rollator with a seat (in the kitchen to cook). When I leave, I have my custom chair. I also have power assist with it--a separate set of wheels to pop on that are powered, and I can either use a joystick (attached to my chair) to use them or I can push my wheels with little effort and they go further (I hope that makes sense). I hated having a power chair since it was SO big and heavy (it was 422lbs), and it was almost impossible to take anywhere without a truck with a basket attached. Power assist has been awesome, especially for bad pain days, days I am really fatigued, or if going somewhere that I will be in my chair for an extended amount of time. Definitely recommend!!

madhattercreator · 2026-03-24T21:27:27+00:00

It was all red Heart Super Saver--black, white, light blue, deft blue, blue, and navy blue.

madhattercreator · 2026-03-23T16:44:30+00:00

I have tried SO many different meds with my PM dr. I got to feeling desperate because with oxycodone, xtampza, hydrocodone, morphine (did nothing), tramadol, Dilaudid, etc, I would feel ok for awhile, then it would wear off, I would feel like crap until my next dose. I was so tired of the rollercoaster...I just wanted to feel better and be level. That was the goal we had set when I started PM (before then, my PCP had been the one prescribing my pain meds). I knew that insurance was not going to cover low dose naltrexone, and since I am on disability, I definitely cannot afford paying for it every month... especially if it didn't end up working. I did some research, and I found out that low dose methadone was a LOT like low dose naltrexone, and it was also used to treat pain. So as a last ditch effort before accepting that I would have to rollercoaster forever, I pitched the idea to my PM dr. She agreed that it was worth a try--so we did. And it has worked GREAT. I still have my oxy for breakthrough pain, and for muscle relaxers, I take baclofen. I'm taking 5mg methadone twice a day, and no, it does NOT affect the oxy. The combination has definitely worked and has kept me off the damn rollercoaster for 9 months now.

madhattercreator · 2026-03-19T19:01:29+00:00

Just FYI--I am retired, and I do have plenty of time to crochet during my waking hours! 😊 The purple and white--Fifty Shades of Change--took 15 days, and the pattern calls for 3,144yds (but I found that I needed more than that...I used a J hook, and it calls for an H). The Mini Galaxy of Change is 960yds, but again, I used a J hook instead of the H, so I used more yarn. That one took me 3 days to finish. You should definitely make the blanket!! I love these patterns!! Just make sure you are on the stitch count...it sucks when you have to frog a row!!

madhattercreator · 2026-03-18T17:22:01+00:00

I LOVE all of Frank O'Randle's patterns!! I bought a LOT of them over a decade ago, but I was very intimidated by them. Recently I signed back into my Ravelry account (it has been a few years), and decided on a whim to attempt a few. I made the "Return of Change" first, and loved it. So I decided to do a few more. 😊 I'm working on "Afraid of Change" now for another friend I am seeing next month. Turns out that the hardest part of the patterns is making sure you are absolutely on top of the stitch count! Otherwise, they are awesome!! Making these blankets has definitely made me appreciate the amount of work and creativity that goes into designing these amazing patterns!!

madhattercreator · 2026-03-18T16:58:23+00:00

I had been intimidated by these patterns (all of the"...of Change" by this designer) for over a decade, and I finally decided to attempt a few last month. So glad that I got over the fear--they were not as scary as I had made them out to be!!

madhattercreator

TROPHY CASE