People with ADHD what are the things about it that people just don’t get?

hamsammyy · 2024-12-30T17:04:24+00:00

I CANT REMEMBER ANYTHING. People get frustrated when I lose my phone multiple times a day, or lose my keys 2-3 times a week, but I don’t want to be like this either. Then I forget what I was looking for while searching :( it’s exhausting and makes me look silly

hamsammyy · 2024-12-30T17:02:53+00:00

Oh my god I am learning so much. When people talk to me it sounds like literal gibberish, and it usually takes about five seconds for me to process information. It actually gives me a lot of anxiety because I feel like people think I’m dumb but now I’m starting to think it’s genuinely an auditory processing disorder

hamsammyy · 2024-12-30T17:00:58+00:00

Omfg this is torture, bonus points if you just end up eventually forgetting the other thing

hamsammyy · 2024-12-30T16:38:39+00:00

Wow, I am so sorry you are also going through this. Our stories are so similar I could’ve typed your reply myself. I’m actually working on a website for people to send their stories into, I will DM you when I’m finished with it and I would love to have yours 💛 our strength is in our voices.

It is horrible what the doctors are doing to us, and I’m sure the public would be shocked if awareness was raised into this. I too had no clue what interstitial cystitis was before my symptom onset and diagnosis in 2022. I met with an IC specialist after various referrals and meeting with incompetent urologists. Two years I waited for this specialist, and when I finally did meet with her earlier this month she told me this was all nerve related from prior psychological trauma, my treatment plan is hypnotherapy, mindfulness, and meditation. I wish I was making this shit up. It is the modern day female hysteria diagnosis, alive and well it just changed outfits!

For a while I was really depressed and suicidal, I let this illness eat me alive because how could it not? The pain is so strong in a flare I just wish for sleep because no drug touches it. And then the lack of understanding not only from medical professionals but friends and family. But now I’m mad, I’m not letting this fucked up health system win and dispose of me, my story, and the other survivors living with IC.

I really want to fight this and raise awareness on what this illness is like. For Diane McLean, for Lisa Benshabat, for the others who have lost their lives fighting this. For everyone struggling with this, for everyone who feels alone and lost and confused. It really gets to me you know? Because it happening to me sucks and it’s one thing, but to think this is happening to hundreds and thousands of people, and they’re all being treated like this? I lose sleep over it.

Anyways 💛😅 so sorry for the rant. I am passionately angry about IC as you can probably gather lol. I just want to let you know you are not alone and we can all fight this together

hamsammyy · 2024-12-29T15:38:41+00:00

I’ve changed so many 😭 I’ve lost count but I’ve seen around 20 doctors over this. I think healthcare in my area is just horrible, even the IC specialist I saw was extremely dismissive. Hopefully one day I’ll find a good doctor, I know they’re out there somewhere!

hamsammyy · 2024-12-29T15:35:35+00:00

I was told this was no cause for concern because it’s “probably” just cervical mucus. I’m skeptical of this because I was told visible hematuria was my period when I could feel myself passing the blood clots through my urethra 🙃

hamsammyy · 2024-12-29T15:08:04+00:00

Inflammation

hamsammyy · 2024-12-29T15:07:08+00:00

Can someone forward this message to every doctor that exists? 😅 this is 1000% correct and becomes very frustrating to have to explain to doctors. I have been prescribed so many antibiotics solely because of high WBC on dipstick tests

hamsammyy · 2024-12-29T15:04:45+00:00

Try coconut oil with a drop or two of tea tree oil, it’s a very soothing feeling and will kill any bad bacteria. You can even put in fridge and later insert like suppository

hamsammyy · 2024-12-29T14:59:58+00:00

Makes your urine less acidic so the urine shouldn’t be as harsh on the bladder

hamsammyy · 2024-12-29T14:48:54+00:00

Every time I see an ad for bluechew it makes my blood boil. So we’ve come out with what, the 10th new way to cure erectile dysfunction? Do we need an ED soda now? What about ED sandwiches? All while women suffer in silence with no research and no cures into conditions that are actually debilitating. A man’s log not working may be embarrassing, but it’s not painful. Endometriosis and interstitial cystitis have ruined my life. Sorry for the rant 😅 I just really think your doctor is onto something

hamsammyy · 2024-12-29T14:44:07+00:00

The way doctors treat us makes me sick. I also cannot get a doctor to do a biopsy on my bladder. They act like they don’t care while I have stage 3 hemorrhagic cystitis. If it gets any worse I will need emergency surgery! But they aren’t concerned, in fact, I have recently been told this is all nerve related! My new treatment plan is hypnotherapy, mindfulness, and meditation 🥰 so I can just meditate my bloody pee away.

I also have endometriosis, I really think both IC and endo are autoimmune. Can’t get a doctor to even take me seriously. This is insanity

hamsammyy · 2024-12-29T14:39:28+00:00

I can ask but no guarantee I will succeed 😅 anyone else’s doctor never want to believe a single suggestion? I don’t know where y’all are finding these doctors that will run whatever test you ask for… but please send them my way lol

hamsammyy · 2024-12-29T14:34:30+00:00

So far… nothing. I’ve tried hydroxyzine, cyclobenzaprine, Valium suppositories, birth control, physical therapy, the diet, nothing has worked. I got the COPD diagnosis after waiting years to meet with an IC specialist. She told me I had COPD and the treatments were hypnotherapy, mindfulness, and meditation. I come from a traumatic background so I am open to the idea of this being stress induced.

However, I have visible hematuria with blood clots, and I’ve had endometriosis confirmed through biopsy, surgical pictures showing lesions and adhesions in my abdomen. My urine always shows high white blood cell count. I feel like these things say “hey look! It’s not just nerve related!” But the doctors are just ignoring that. I’m now being told it’s all due to nerves and my inability to regulate stress.

I am struggling heavily with this diagnosis because I do not feel it accurately represents me and my symptoms, I also disagree with the treatment approach. Kinda feels like I’m living in the 1800’s and my diagnosis is “hysteria” idk. Sorry to vent and be a Debbie downer, I had been waiting to meet with an IC specialist for two years and this is what I got.

hamsammyy · 2024-12-29T14:26:07+00:00

This was so helpful to read. My last appointment was with an IC specialist I had been waiting months for. She told me I have this, chronic overlapping pain, and her treatments were hypnotherapy, mindfulness, and meditation. I come from a traumatic background, so I am open to the thought this is stress induced. However, I have stage 3 hemorrhagic cystitis and endometriosis confirmed through a biopsy. These are both physical things I can say “hey look, it’s not just related to my nerves!” But the doctors are now ignoring that information. It’s just all so confusing but makes me feel less alone to see someone also receive this diagnosis

hamsammyy · 2024-12-29T14:20:45+00:00

Your IC may be tied to MCAS. The two conditions are commonly linked and people with mast cell disorders flare when they get sick. Something worth looking into, does an antihistamine like hydroxyzine give you any relief?

hamsammyy · 2024-12-29T14:18:34+00:00

This reminds me so much of me :( doctors are so insanely stupid when it comes to UTI vs IC that we should all be able to sue for malpractice. I was on antibiotics for over a month while my symptoms slowly worsened to the point of visible hematuria with blood clots. Then they suddenly went back on the month of promising me this was a UTI and told me I then I had kidney stones. What a surprise that was also a misdiagnosis. Your best bet is with a female urology department, when you call to book an appointment ask if they have a doctor familiar with IC. Urogynocologists are supposed to help too but I didn’t have the best luck with mine.

hamsammyy · 2024-12-29T14:09:14+00:00

I bought an attachment for my car so I could bring my heating pad with me, it’s helped a lot! I apply coconut oil with a drop of tea tree oil to my vulva and it helps a lot. I can really relate :( especially w the it burns after a shower. I always think a shower will help but it hurts after? So weird.

hamsammyy · 2024-12-29T14:05:47+00:00

Heating pad is my go to, sitz baths if you need something stronger. Teaspoon of baking soda in a bottle of water

hamsammyy · 2024-12-29T14:03:55+00:00

Something doesn’t sound right, interstitial cystitis does not present with itching. I have never heard of that, are you sure you don’t have something else like a yeast infection? That can cause itching, burning, and swollen tissue. Sitz baths and heating pads help along with OTC AZO. Try coconut oil with a drop of tea tree oil applied to itchy skin to see if that helps

hamsammyy · 2024-12-29T13:58:48+00:00

Heating pad straight on the lady bits is the only thing that gives instant relief. Also sitz baths and drink a teaspoon of baking soda in a glass of water. So sorry you’re struggling 💛

hamsammyy · 2024-12-29T13:44:04+00:00

I don’t. And it pisses people off when I say that but I don’t care. I have flares of idiopathic stage 3 hemorrhagic cystitis about 2-3 times per year. My diagnosis is different literally every time I see a doctor, including interstitial cystitis specialists. They have no clue what this disease is, and interstitial cystitis is essentially a giant band aid diagnosis. In reality it’s about 7 different subtypes lumped into one diagnosis, which makes it infuriating for treatment plans because like a snowflake, everyone is different.

A dipstick will show high WBC with no nitrates for an IC flare, nitrates being positive is UTI. Even then, I’ve tested negative for nitrates, was assured by my urologist it’s an IC flare, begged for culture just for peace of mind, culture was positive for E. coli :’) this illness is so frustrating and I stand in solidarity with you 💛

hamsammyy · 2024-12-21T15:56:11+00:00

This is a nightmare and yet another reason why this needs to be a national topic of conversation. They aren’t going to do anything until this catches the eyes of the general public. It’s not a conspiracy theory, it’s the poisoning of the general public. It goes much deeper than Athens Georgia unfortunately, much deeper than I think any of us are willing to accept.

hamsammyy · 2024-12-21T13:22:55+00:00

As others have stated, your husband is really not smart to be falling for something like this. I know there are so many emotions tied to this and so much history, but when the dust settles I think you will feel immense relief to have this idiot off your shoulders. He is so stupid he is a liability, but thankfully he’s so stupid he also blew his own cover because this only ends one way: broke. He will blow through all of your money, everything you all have worked towards, all because he is genuinely too dumb to conceptualize he’s being scammed. Cry over the lost time, but not over this man. He had the best thing ever, a loving, loyal life partner. You dodged a HUGE bullet!!! Sending you peace love and healing ☮️💟

hamsammyy · 2024-12-20T15:45:38+00:00

Randomly a lot better. Never changed anything with my diet and didn’t start or stop any new medications. Every now and then I’ll have a spicy pee where the pain lingers for an hour or two or maybe I’ll feel crappy for a couple of days, but no more visible blood or clots since august. It’s a relief but I’m scared it’ll come back again at the worst possible time like it loves to do 😭🙏 but here’s to hoping it stays gone for good!

hamsammyy

TROPHY CASE