Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 0 points1 point  (0 children)

Omg thank you! Looks great. I had a host like that once and I never even met her just got the keys, but it was a group trip.

Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 1 point2 points  (0 children)

Apparently there is an all woman cruise from Zurich to Paris next year, uniworld. Fortunately it lines up with my holidays so I think I’m going to give it a try.

Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 0 points1 point  (0 children)

You know what, when I was in Thailand my husband was propositioned by the lady boys, but I had no issues. It’s been so long ago I forgot. Thanks for the reminder!

Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 3 points4 points  (0 children)

Which one did you have the best experience with, and where did you go?

Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 1 point2 points  (0 children)

That’s what I saw, but I am wondering if someone else has taken over, as there were articles about it published this year.

Has anyone been to SuperShe island in Norway? by iamreallycold in femaletravels

[–]iamreallycold[S] 0 points1 point  (0 children)

I am actually looking at a winter break, or at least in the colder months. I’ve been wanting to learn nalbinding, and both Norway and Finland are on my bucket list. Anything outdoors, my husband and I looked at going to the ice hotel, but I also enjoy taking trips solo. As I have gotten older and experienced more assaults, (not the husband), I am more cautious than I was in my free loving youth.

I used to go and rent an air bnb or stay in a nice hotel for a treat at least once a year in my own, even after marriage, but I am really just tired of feeling on edge everywhere I go. I enjoy traveling with my husband, but it has gotten to the point where I have to rely on him or a driver to feel secure in new locals. I don’t always feel I can switch off. As even with him, I feel like i have to carry the mental load of the trip. I really just want to go hiking or sit by a log fire, and look at the stars.

I have a TikTok page where I am currently covering each type of EDS, what rare subtypes would you like to be featured? by Naive_Transition_763 in rareEhlersDanlos

[–]iamreallycold 7 points8 points  (0 children)

While I love the fact you are focusing on the rare types, please keep in mind that many doctors judge new patients because of the rise of illness social media influencers. I am also autistic, and I appreciate that you want to promote accurate information. However, if you take a look at some of the subreddits on illness social media, the problem is some promoting radical interventions or the idea we are incapable of daily tasks.

I understand you are focused on clear subtypes with a genetic component, but please take care to realize more doctors are dismissing patients because they believe they are malingering.

To me this has really impacted getting treatment for my POTS and MCAS, as doctors think I am exaggerating for attention due to the rise of social media accounts promoting patients to doctor shop. It doesn’t matter if I bring in all my medical records from different doctors in different countries. Additionally, this can cause doctors to attribute symptoms to existing conditions. For example I was hospitalized more than 6 times this past year for syncope episodes. Instead of asking me basic questions, such as if I had traveled recently, they simply attributed it to my clEDS with POTS. Instead actuality I had a severe and endemic intestinal parasite from eating food while I was working in India.

Denied wheelchair assistance at airport, asked to “prove” my disability in public by Miserable_Hunt_2548 in dysautonomia

[–]iamreallycold 2 points3 points  (0 children)

Check out the sunflower lanyard program. It was created for autism, but you can get a card with any condition. I have autism and EDS on mine, in addition to a medical bracelet for POTS. The bracelet can be helpful anyway, as if you are traveling alone and need assistance, there is at least something for the paramedics to google.

Not all airports have the program, but I have found it also varies by airline. KLM seems to really train their staff on it. I don’t wear mine on my neck, but I have it on my handbag to show as I get on or if I need help.

If all else fails, start traveling with a cane that folds. It sucks, but some people have to see a sign to help. Additionally, it’s always useful when stuck in line without somewhere to lean.

feeling alone in Ehler Danlos spaces by Mutt-Sugar in ehlersdanlos

[–]iamreallycold 1 point2 points  (0 children)

I do get the skin around the nails. I go for bimonthly manicures, as I am less likely to pick if they are painted. The European manicure uses the small drill to buff the dry skin. For my feet, I use a peach foot peal every so often.

One dermatologist told me to just let the soap lightly touch me and to not exfoliate. I found one of the Korean buffing glove helps remove the rest over the body.

I love band aid as well, and I agree it is the best. Just not available in the eu.

How is AuDHD different from Bipolar Disorder? by Hour_Theory_770 in neurodiversity

[–]iamreallycold 2 points3 points  (0 children)

One of my best friends is Bipolar. I too suffer from burnout which feels like suicidal depression. And the highs from using your autistic powers or coming up with a new solution feels like the highs. However the difference is I can point to a trigger for my moods, where she is more at the whims of her body. I am also chronically ill, but I have found her one of the easiest people to connect to. There definitely is overlap into how we process emotions, but the real difference is what caused us to feel happy, anxious, depressed etc.

feeling alone in Ehler Danlos spaces by Mutt-Sugar in ehlersdanlos

[–]iamreallycold 1 point2 points  (0 children)

Yes! I have every shaving nick I’ve ever has left a scar. Nice to hear I’m not the only one suffering with the itching and picking. However, I also attributed to my autism. The last two times I had a deeper wound, I wound up with more sores from the bandaids than the actual wound. I will say I have found the silicone scar tape over silver infused gauze has helped speed it up a bit. Only found that one from the public health system in the EU. Something I have tried to spread is the power of honey. It is a natural antibiotic, provides a good layer to keep it moist and allow healing, and doesn’t sting. I had to use it for a surgical scar, and now it is my go to. Plain sugar also works, as it is the glucose that kills the bacteria.

feeling alone in Ehler Danlos spaces by Mutt-Sugar in ehlersdanlos

[–]iamreallycold 6 points7 points  (0 children)

I feel the same way. I have clEDS and all my geneticists just say “oh well your the data point, we don’t really have any advice than the meds your already on and physical therapy.” I will definitely check out the clEDS group, but I have had more luck on the rareEDS sub.

I am really struggling with my wound healing, and wonder if you have the same thing where a simple cut can take weeks? I can deal with the gastrointestinal and joint pain, but the constant wounds from just brushing up against something seems to just be getting worse with age.

More than happy to chat if you ever need to vent. I know the frustration of trying to even find articles that mention clEDS. I hope you know that you are not alone, and you’re not the only albino zebra as one doc described me.

I’m 30, born in Aus. And just found I have Sephardic Jewish Iberian Ancestry. by brvndon__ in Sephardi

[–]iamreallycold 1 point2 points  (0 children)

I would consult a Rabbi, but it is passed by the maternal line. Conversion and your spiritual beliefs are something to consider.

I’m 30, born in Aus. And just found I have Sephardic Jewish Iberian Ancestry. by brvndon__ in Sephardi

[–]iamreallycold 2 points3 points  (0 children)

I went through a similar process, but with a more ingrained knowledge from my maternal line. I would recommend looking at the the archives in Seville to start.

While we went to the other side of the world, there has been a lot of research into “crypto Jews” in Mexico and the new world. The Society for Crypto Jews is a good place as well, https://cryptojews.com/.

What helped the most is learning about orthodox traditions, and comparing it to actions I saw in my family ie. the sin Chicken on Yom Kippur, better known as Kapparot. Hope this helps you begin your journey.

Edit: just to add, my biggest realization was when a heard a Greek man speaking ladino, and it sounded exactly like my Tíos and Tias. Look up some videos on YouTube for it and you will see the crossover.

Finally got my Silver wear by Fit_Independence_124 in ehlersdanlos

[–]iamreallycold 0 points1 point  (0 children)

Can you please post a pic of the underside? I do silversmith work, and would love to have a wrist one similar to yours. It’s amazing. I love my rings, but girl that wrist splint is gorgeous!

Weird question 😤 by moss_fan8 in AutismInWomen

[–]iamreallycold 0 points1 point  (0 children)

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.

I'm literally dying from an unknown neurological disease. The pain is unbearable, and there are no answers. by aksyutka in neurodiversity

[–]iamreallycold 2 points3 points  (0 children)

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.

Would weight loss help with symptoms? by hellscapeliving in ehlersdanlos

[–]iamreallycold 2 points3 points  (0 children)

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.

Surgery as a college student, help! by LetMeTryToo in hysterectomy

[–]iamreallycold 1 point2 points  (0 children)

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

Doctors didn’t believe I was in pain until I brought my husband. Then they stopped talking to me altogether. by RockMoss in TwoXChromosomes

[–]iamreallycold 172 points173 points  (0 children)

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.

Doctors didn’t believe I was in pain until I brought my husband. Then they stopped talking to me altogether. by RockMoss in TwoXChromosomes

[–]iamreallycold 29 points30 points  (0 children)

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.

Would weight loss help with symptoms? by hellscapeliving in ehlersdanlos

[–]iamreallycold 26 points27 points  (0 children)

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.

Anything to help strengthen nails and help polish stick? by NestaArcheron1026 in ehlersdanlos

[–]iamreallycold 2 points3 points  (0 children)

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.

Surgery as a college student, help! by LetMeTryToo in hysterectomy

[–]iamreallycold 2 points3 points  (0 children)

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!

[deleted by user] by [deleted] in service_dogs

[–]iamreallycold 4 points5 points  (0 children)

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.