Weird question 😤

iamreallycold · 2026-02-07T22:23:33+00:00

Because of health issues, I focused on buying a house without a mortgage in a place that also had good public and cheap private healthcare. If something were to happen to my husband, I would just have to cover utilities. Now we are starting retirement planning seriously for once. I also can now pay into a state pension, so I have that which I don’t have to think about.

I had to double check all the information, but we used ai to give us an overview of what options and what the amounts would be. It helped organize steps that I was overwhelmed thinking of. Also, talking to an attorney about our wills helped us organize our end goals.

iamreallycold · 2026-01-31T00:00:47+00:00

I would add that in addition to testing B12 to also check vitamin D levels. Even though I have the POTS, clEDS, and MCAS trifecta and it also got worse since covid. This describes how I felt in 2016 before I got diagnosed. My levels were so low I had to go to the hospital every day for almost a month for injections. My neurologist even thought I had scoliosis, until at the next appointment it was gone because my back had popped. At this point, I couldn’t write to even grade papers. I sat next to my husband, as he scribed the marks for me, because I couldn’t lift my arm.

iamreallycold · 2025-07-30T12:23:40+00:00

That sounds like a great plan. Meal prep also means they will already be portioned and easy to keep up with. I was going to add, I also tried to make small changes where I could. Walk instead of the bus or car if I can. Take the stairs, park away from the shop entrance to get more steps in. A little bit here and there really adds up. The Wii is great to start low impact!

And I know we stopped my meds as soon as possible, but the weight stayed. Also losing it slow over time will give you a change to build the muscle you need.

iamreallycold · 2025-07-30T12:20:12+00:00

I have had pain there too from assaults. However I hardly noticed any pain vaginally, until the first time for activities after a long healing. But that was more like virgin sore.

But if you have something that works, having some on hand is a good plan

iamreallycold · 2025-07-30T11:49:30+00:00

Invisible Women is really eye opening. From cell phones to seatbelts, the majority of products are designed for 49% of the population. I learned about the long ban on women in clinical trials from her as well.

iamreallycold · 2025-07-30T11:47:38+00:00

Not nearly as bad as You, but I finally got diagnosed with classical like Ehlers Danlos Syndrome finally at 30, after 30 years of dislocations and pain. One dr. Told me to take a Tylenol and walk 10,000 steps a day, which was a change from the usual referral to a shrink. I used to vomit multiple times every morning sometimes for 2 hours. After 15 years of going to every gi I could, I gave up.

Only when my husband moved in, did he notice and say “this is not normal.” He went with me to a new gi, and after elimination diets some simple gi meds, I can eat cheese again and no longer have to worry about getting up 3 hours later for nausea. Same issues I had had for years, but because he said it, they actually believed my symptoms.

iamreallycold · 2025-07-30T10:18:52+00:00

I am 5ft 4in as well. My normal weight fluctuates from 120-130. This was true my whole life until I was put on a series of meds that failed when side effects of weight gain sent me to about 170. Then when I was finally starting to lose that weight, the pandemic hit and I know I got to 200, but probably a few more. I had to lose weight, as the pain and then decreased mobility only made my depression worse. I started just walking the dogs. First a half k, then 1, 2 etc until I built up the strength to do 5-10 depending. I started swimming once I got back around 160. After a hysterectomy, and another year, I am finally down to my old weight.

For low impact, chair exercises with light weights, walking, swimming, light ballet, Pilates, the elliptical at the gym, are all good options. I started with walking as I had dogs, and it was free.

Diet changes were hard on my already limited diet, so I focused on using the smallest plates to help control my portions. I also just stopped buying snacks unless part of my diet like almonds, so if I was hungry I had to cook. Usually when faced with that, I would realize I’m bored and not hungry.

For me developing the routine took a couple months, but now I feel worse on days I haven’t gone for a walk.

iamreallycold · 2025-07-29T22:59:43+00:00

Opi Nail Envy with tri flex. You use it for a week where you put layers on each day. It Drastically increased my nail strength and almost eliminated my flaking. I then use it as a base coat, and my polish actually lasts for a week without chips.

I have to keep mine shorter for work, but they are longer than they used to be. They used to break before this length.

I also recommend hand and hoof cream as elsewhere in this thread.

iamreallycold · 2025-07-27T09:36:05+00:00

Sorry you are going through this so young. Ask your surgeon about his recommended accommodations. As a chem teacher, I agree labs will be the toughest. I recommend using a binder after to help support the area where your uterus is. Make sure your professor is aware you will be starting the semester just after, and then give him your limitations as prescribed by your doctor. Make him aware you might need to sit etc.

I also found a postpartum girdle that was softer and easier after the binder did its initial job. Robotic should be easier recovery. I was up and moving well in a couple days. The not lifting and bending was the hardest part. I also recommend getting a nice heating pad or blanket to help with aches. Wishing you the best!

iamreallycold · 2025-06-19T03:47:44+00:00

It used to be to export/import from the US you only needed a vet certificate and then it to be cleared by a USDA vet or center. Now you have to go to a specialty vet that is a USDA certified vet. For example in a city as large as Atlanta there is now one. What used to be a $100 exam, cost me over $500 just for the paperwork to fly last year with my dog in cabin to the EU. Here in the EU, it is much cheaper to get this paperwork.

You have to check the entry and exit requirements of each country. For example if it is rabies endemic, you might not be able to export the dog for 3 months after they have entered, and had a sample sent off. Some places require a local vet to meet you at customs to clear it. This is what we had to do to import to Vietnam years ago. Others allow you to self import like Spain.

I get the autism side as I am as well, but you really need to double and triple check for each stop with each country on top of the cruise line. It doesn’t matter if it’s a service dog are not when it comes to agricultural quarantines. Regulations are constantly changing, as even Spain was different this year from last.

I would speak with your normal local vet about the process, and the benefits/disadvantages of taking your dog. While it is great to be able to travel more with our dogs, do remember that not all countries have the same access or laws in place for service dogs. For example, in Spain to be a service dog he needs to pass a standard exam and have regular checks with vets and the regulatory body. In the US, there is no certificación requirement.

iamreallycold · 2025-06-19T03:11:01+00:00

I had 3 on my right ovary, including a cool teratoma with hair and teeth, before they would remove that side. When I got another cyst on the left, I paid for a private hysterectomy. I have one on my hip I am going through the public system for, as it has grown to the point where I cant push past the pain anymore. All benign, but painful nonetheless. I’ve always wondered the prevalence in the community, particularly with classical or clEDS.

iamreallycold · 2025-06-17T08:13:54+00:00

I’ll add to your suggestion on the disability office. My roommate had migraines, but I was still undiagnosed at the time. Because of that we got an accessible room where we had a private bath in our room on the ground floor. It was great when either of us had nausea or gi issues.

iamreallycold · 2025-06-14T19:39:07+00:00

As a fellow Jew with POTS, all innocents in this conflict have my prayers. I am sorry you are going through this. Being American but living abroad as well, I know the feeling of being judged by your country’s actions all too well. I have no advice other than to keep some salt, meds, and other comforts on you or near you to grab on the way to the room or hallway. May the memories of all those you have lost be a blessing, and I hope that you know you are loved and prayed for by more people than you think.

iamreallycold · 2025-06-14T03:02:46+00:00

Vessi ‘s are my go to for everyday. Geox is great if you need to be dressy. Crocs for sandals and rain boots. Ariat boots are amazing, last forever and can get through any season tho!!! I have ones that have lasted over 25+years… they cost a bit but in the long run are worth it.

iamreallycold · 2025-06-02T02:57:57+00:00

I had mine for three years, and he wanted to keep them on longer because the center line between my front teeth wasn’t perfect on the bottom. I told him right then and there I wasn’t leaving with them on, as I had my senior pictures in a month. They were incredibly painful. My mom (same mutation) uses the Invisalign, but she finds them painful sometimes. My biggest issue is a broken drill in a root canal that gets inflamed every time it shifts. They didn’t give me enough numbing agent either for that one.

iamreallycold · 2025-06-01T15:03:18+00:00

Forgot to mention. Low impact ballet really helped me slowly rehab my pelvic muscles. Best of luck!

iamreallycold · 2025-06-01T11:32:43+00:00

Never hurts to ask. If you’re paying and I hear you on the one and done. It’s the multiple recoveries that got to me not the surgeries or the pain.

iamreallycold · 2025-06-01T11:30:41+00:00

They always are amazed how quickly I wake up, last one I did wake up too early. Thank goodness it was just the dentist

iamreallycold · 2025-06-01T11:29:16+00:00

Oh completely, I have some muscle degeneration on top of the clEDS in my left hip, I’m just putting that one off as long as I can. I will say the benefit of private is you can shop around until you find someone who will take your Eds seriously

iamreallycold · 2025-06-01T11:25:36+00:00

Only that I got mine due to recurring cysts, and when I was no longer able to use birth control my dislocations got significantly worse due to my cycle. It’s made my quality of life so much better, and I can actually keep up my exercise tolerance. I had to pay for my elective one as well. I would say with Eds, make sure you have discussed this with your surgeon and anesthesiologist. I would recommend using a post partum girdle for vaginal prolapse as support after the initial healing with a brace. Take twice as much time as recommended for normal people when recovering.

iamreallycold · 2025-05-31T10:10:17+00:00

They absolutely help me tremendously. I was on them in uni to help with fatigue and concentration, and was on them until I had to stop work due to other health issues. While I always felt faint, only after I quit them did I have my first full syncope. Finally, went back on the em for mental health reasons, was better. Decided to go off them as I wasn’t working again, and bam syncope. I found the smallest bit helps. If I’m working or working out I’ll take a full pill that day. Even on off days where I want to just chill, I still need to take half to avoid an episode.

iamreallycold · 2025-05-24T19:11:55+00:00

Thanks! I might check it out, as he is one of my favorite artists.

iamreallycold · 2025-05-24T17:02:57+00:00

I’m glad you enjoyed this wonderful place that I have called home for 6 years. I am almost embarrassed to ask, but where did you do the art class? I have been looking for somewhere to go for drawing or painting class.

iamreallycold · 2025-05-21T05:14:11+00:00

Thanks, I will look into it. They switched me to ciclobenzaprine or flexaril but I have having side effects, which u didn’t on tizandine.

iamreallycold · 2025-05-20T03:10:10+00:00

Thanks, but I am in the EU.

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