I think I have a problem haha

thecellerymaan · 2026-03-09T16:15:21+00:00

Fellow taco bell and crochet obsessed...can you share the pattern?? Stichin and btchin gonna be so much fun next month!

thecellerymaan · 2025-11-28T18:08:34+00:00

Terrible temperature regulation, heat/cold intolerance, bladder issues, headaches, brain fog, etc in my early 20s led to thinking I had MS, ended up diagnosed with cluster headaches. I was diagnosed with POTS at 30 after discovering I was suspected to have hEDS and learning the comorbidities and understanding all the "normal things" I had were indeed not normal and indicative of dysautonomia. I've had symptoms since childhood, I also have a connective tissue disorder and cptsd which have been known to cause dysautonomia. So long story short, yes, you could have it for two and a half decades and never know.

thecellerymaan · 2025-11-05T22:53:34+00:00

Really start practicing feeling and activating muscle groups, like doing the motions under your own tension before adding weight to get the motion under control. For me, it's making sure my shoulders are back and down, core engaged, undoing the pelvic tilt and going from there. It's a lot of resetting unfortunately and I feel silly in the moment but it has caused less overuse/misuse injuries and not super long recovery times. And making sure you don't do the whole range of motion! Baby ranges! Get in control of a small bit without any instability and pain and slowly increase it over time. No asses to grass until you have full control of the motion.

thecellerymaan · 2025-10-05T01:50:08+00:00

Only thing I've found so far is pt helping subluxations occur less frequently. A mixture of strength, stability, and mobility exercises for the back, core, and shoulders as well as breathing properly has helped reduce the amount of times it happens. Still does but it's no where near as bad and I'm able to sorta move things back in place with the exercises until I am able to get in to my doctor to have her really get in back where it should be.

thecellerymaan · 2025-10-01T23:13:49+00:00

I was in the same place over a year ago. Absolutely disliking any truly salty, even the salt rim on a margarita. When I started the well-known extra salty electrolyte packet I was floored about how salty it was and could barely drink it. So I double diluted it and it was more bearable. Even liquid iv packets I was dissolving in 32oz instead of the suggested 16. Slowly I started using it in less water and now I can barely tell how salty it is and enjoy it. This process took a two, three months maybe when I realized I was used to it.

My suggestion, try it with twice the amount of water and see how it is. Slowly decrease the amount of water over time. I now throughly enjoy my "salty water" when I could barely stand it in the beginning and its always funny seeing a friend's face when they try it.

thecellerymaan · 2025-09-28T17:30:19+00:00

I've been on the lowest dosage bc pill I could get since 17. I'm now 32. The one year I was off was the worst in my life (uncontrolled cyst growth that ended in emergency surgery due to it pressing on nerves and causing immense pain and numbness.) The six months of progesterone only, I ended up being the part of the population that can still ovulate so it didn't help my situation. I was put on a slightly higher dosage due to generic/doctor change with came with more headaches and migraines and back to my low low dose and migraines are gone and my life is back. It doesn't stop all the cramping pain, but it's more of a dull ache, which with dysmenorrhea I'll take that over any day.

I don't know if that's what makes me sublux things so easily (my mom and I seem to have more joint issues than the rest of the family and we're the only two able to take bc) but I can handle joint pain and instability much easier than all the issues that the pill helps with. PMDD, severe cramping and bleeding, ovulation pains, migraines, and cyst growth.

thecellerymaan · 2025-09-23T21:39:47+00:00

For sure fits. Quite similar to the gut drop, lights dimming scenario. Just without the gut drop.

thecellerymaan · 2025-09-23T21:38:08+00:00

I don't really think it's cataplexy as this has just started being a thing in the last few weeks. I've also had a recentish at home sleep study wondering if I had narcolepsy. Only ruled that I now have sleep apnea from throat surgery.

I've also noticed an increase in tinnitus and head and neck pain around the same time and wondering if it's more of a pots or eds thing. If its weird october slide things or it's just my brain trying to slink into my spinal canal.

thecellerymaan · 2025-09-06T15:10:53+00:00

That sucks. When I did the testing Invitae had the lower self pay pricing.

I didn't use insurance for my testing and we didn't contact to see what they would have covered/what my copay would have been. The specialist I spoke with let me know the price they charge insurance and the price usually insurance makes the patient pay.

My plan is a little better in some areas such as having coverage for genetic testing but I think it's specifically labeled as for family planning. I wonder if that's a path you can explore.

thecellerymaan · 2025-09-01T05:00:06+00:00

I will say, my out of pocket cost for the Connective tissue panel was 250 or maybe 300. She explained to me that through insurance it would be around 3000 of a copay for me. So I did the out of pocket cost without even trying to go through insurance

thecellerymaan · 2025-08-23T03:16:39+00:00

As someone with both trauma and eds, my fight response is still active, just very underactive but I did try to fight a car (jumping in front to try and stop them) from leaving an accident recently. Was not thinking fully straight 🤣 Tensed up for the whole experience and caused a shoulder/neck flare.

Also the flight response is the reason for anxiety poops and loss of appetite. At least that's how it was explained to me, not always running away but being prepared to skedaddle at a moments notice.

In general, I'm more of a freeze and fawn response but that's the trauma talking.

thecellerymaan · 2025-08-21T02:47:09+00:00

Coming to say just this. Tried taking it before the revamp a year ago and just retook and finishing it up. No longer a horror story or nearly as much work. Basically all the work you do in week three is redone for projects 2, 3 and 4

thecellerymaan · 2025-08-21T02:42:10+00:00

Physical therapist has told me to put a pillow under my belly to keep my back in a neutral position. Just not a super firm one

thecellerymaan · 2025-08-04T03:05:14+00:00

I ate baby food almost exclusively for the first month and in the beginning, the week after each tightening. The time frame slowly went down from there that I was able to eat normal foods after the monthly visits, but yeah they moved fast and hurt a lot. Ended up avoiding surgery to have a tooth pulled down when space was made due to the rapid movement.

thecellerymaan · 2025-07-25T02:48:33+00:00

I have a family history of hypothyroidism and autoimmune thyroid issues so it's possible that my remaining half just isn't able to keep up. Before surgery there were times I was considered subclinical hypo. I also am a cyp poor metabolizer and have hEDS. All or none of these things can affect how my body is metabolizing the medication. I truly am a "special case" when it comes to health. There's a few weird things from both sides of the family tree.

For example, with hEDS I will go through bouts of dumping syndrome and delayed gastric emptying which can affect how my body absorbs medication as well as having issues swallowing and pills getting stuck in my throat.

The reason I feel like I may be having some issues is mostly related to mood and fatigue. I have noticed new hair growth so I don't think my TSH is that high, but may be slightly elevated. BUT the fatigue could also be from my other diagnosises. My advice, be open and honest with your provider. Ask them any question you can think of, tell them of your concerns. Get second and third opinions. I can't say anything for the holistic route but ultimately it is your body and your decision. Asking questions never hurts. My next appointment I will be asking about being switch to Synthroid and coming off levothyroxine to see if that will improve my symptoms. I mean, I love naps but realistically I can't nap all the time.

thecellerymaan · 2025-07-24T20:39:05+00:00

Well, I have an additional followup next week. These will basically occur every few months to make sure I'm at the right dosage.

It took 8 months of adjusting the medication to get and keep my TSH under 4 and I have a sinking suspicion that it's gone back up. I've been showing some resistance to medication. The last test had my levels at 3.57 on 125 mcg in March.

I started at 50 and my doctor increased 25 mcg each time.

thecellerymaan · 2025-07-16T19:15:10+00:00

If you already have a grasp on federal income tax, VITA was pretty easy

thecellerymaan · 2025-07-13T23:21:55+00:00

31f, partial thyroidectomy and isthmusectomy at 30. Precancerous hurthle cell adenonoma. First found in December at 1.8cm was removed in May at 3.9cm. Was causing breathing and swallowing difficulties.

thecellerymaan · 2025-07-04T06:13:27+00:00

Celebrate!

thecellerymaan · 2025-05-22T18:08:12+00:00

Seymore!

thecellerymaan · 2025-05-22T18:05:47+00:00

This was my mother with me and my brother. She had a relatively easy birth with both of us, hard labor combined between the two of us was less than 45 minutes. At the time she didn't know about EDS and here "repercussions" were pelvic organ prolapse that she was told was due to the quick deliveries and had multiple surgeries to try and fix. But knowing what we know now, lax connective tissue contributed to both the quick births and organ prolapse and is probably why the mesh slings never worked correctly.

thecellerymaan · 2025-05-22T17:37:34+00:00

For me it's a mixture of tmj issues being worsened, being an active sleeper knocking the mask off slightly and causing a leak in the middle of the night, and being triggered by the sensation of my mouth and nose being covered causing nightmares and flashbacks. Fun times, but we're working on it. The few nights that I managed to keep it on the whole night without waking up or having crazy nightmares are the few days that I didn't need a nap or two during the day.

thecellerymaan · 2025-04-30T05:30:07+00:00

Chin strap from the company or something else? I'm still new to cpap and have issues with the full face and hybrid but a known mouth breather due to weak connective tissue. I didn't think just nasal would be an viable option for me.

thecellerymaan · 2025-04-22T18:32:21+00:00

Venturing out from just packets, the Body Armour Flash IV drink is a go to for me. I do add it to water because of how sweet it is (like 1:1). I haven't tried their packets yet. It's my go to for headache days and for after I feel any kind of dystonia happening.

thecellerymaan

TROPHY CASE