u/little_half_pint

Are they hidden in a box that I am unaware of? Im always sooo low on fact books and seem to never get fact related boxes in my classifieds. So much so that I cant even visit the University because I never have enough fact books 😅

I just started my first day of Autumn and I am going to the school orientation. It is sunny. Should I bring my cooler regardless? Or does it not matter if its not a beach like area? Thanks!

Hello!

I just started playing and this game is so cute! I am an avid reader, probably like most of you!

Anyways, I just got to the point in the demo where I am recommending books. Someone wanted a kids book, and I thought I nailed it with Nevermoor (it was in the kids section) but he said that it was too complicated? But its a kids novel! So I am confused. Why didnt he like my recommendation?

I also recommended a fantasy novel that I thought may have worked but she didnt like it. And then she told me I wasnt good at selling books, lol. 😭😭

I did recommend a detective book that someone liked!!

Anyhow, my question is - what % of books that you recommend do your customers like? 50%? 80%? Do you get better at this as you go along? I feel bad not recommending the right thing, haha. Is it more rare than not to get a recommendation right?

Thanks!

Just wanted to vent. Ive been really, REALLY hoping I would recover enough in time for this game. I was really looking forward to playing. Alas, I cannot play one single game on my Switch 2 anymore and it makes me sooo sad and bitter.

Some people mourn losing out on life, me - games lol.

Anyone in the same boat that was excited to play this or another game but couldnt?

I feel like I have the flu for a significant part of every day. Sometimes it's more mild like right now, but other times its really heavy and I cannot do anything. I have not found a true baseline yet and I am 1.5 years in to this disease, 10 months of being bedbound and severe. That is because my symptoms and PEM are all over the place, no matter what I do (I do the same thing every day, which is not a lot). It is hard for me to tell what is PEM sometimes and what is just a high symptom burden.

Please someone tell me it gets better!

I really love gaming and havent been able to touch a game in around a year.

But what baffles me is that I can do pretty much everything else on a screen for basically an unlimited amount of time. I could potentially scroll reddit, watch videos/TV, video call, or do whatever but as soon as I try to start gaming, within 5 minutes I have a horrible searing headache, feel like my brain is inflamed/igniting, get nauseous, and will probably get PEM the next day if I dont stop quickly.

And Im not talking World of Warcraft here, Im talking Animal Crossing, Pokopia, Hogwarts Legacy on easy mode - all cozy games.

Its like as soon as I look at my Switch something turns in my brain and I immediately cannot handle it.

Has this happened to anyone else? Has anyone else had this happen and been able to game again? Gaming would bring sooo much joy to my life. This headache is going to take hours to go away 😡

Has anyone experienced increased functional capacity but have worse symptoms overall?

For example, I can walk a tiny more than before or stand and get food from my fridge where I could not before (the fatigue was just too much).

But now I have windows where I can do these things. Like put my dish in the sink. Or ride in a car.

But my symptoms in general are soooo much worse. Headache, nausea, pain, muscle aches, brain inflammation feeling, malaise, have all ramped up. Im more miserable than I was even 2 months ago regarding symptoms, although my crashes have been less severe. I just had more good moments 2 months ago and more clarity, but less functionality.

I am one of those unlucky people that has never been able to find a baseline no matter what I do. Ive tried radical resting, gentle nudging, brain retraining, and do nervous system work every day (somatic tracking, yoga nidra, grounding techniques). But no matter what I do I still crash for a significant part of every day, so Ive just kind of accepted this tornado baseline because it seems like theres nothing I can do about it except keep calm, carry on, and let it sort itself out.

I do want to say that I can attribute any improvement to two medications that I take - suppressive antibiotics for an embedded infection and fludrocortisone (life saver). So maybe thats the reason I improved functionally but everything is a mess under that?

So I dont even know what to think. Is this normal for recovery?

I am enrolled in the Home Based Primary Care program because I am unable to leave my home due to my disability, which my provider already knows because she has been to my house a few times.

I asked to be prescribed birth control (to control some horrible PMS symptoms I have been getting), which is an extremely common medication for primary care providers to prescribe, if not one of the most common things. Just regular old birth control, nothing fancy.

I asked if she could prescribe it, as I cannot leave my house. She told me that I needed a GYN referral. I said that was fine, but could she ask if they would do telehealth because I cannot leave the house. She said no, she would not ask because they will not do it telehealth, and she will not prescribe it, despite the VA prescribing the birth control I am asking for one year ago.

This is so infuriating! It is such a simple prescription! I am up to date on my pap and everything gyn related, as I did all of that right before I became disabled. Its like this woman is too afraid to prescribe anything at all, even within her scope. Maybe its an NP thing, because when I had an MD before her, the MD prescribed me whatever I needed within reason. This NP seems uncomfortable doing anything.

Thanks for letting me vent.

Hello!

I was just wondering if any of you randomly get cloudy urine with no infection (normal urinalysis) and then the next urine is perfectly clear. It usually always happens on my first urine of the day. I have no other UTI symptoms.

I do have kidney stones in both kidneys, one of which is suspected to be infected. We cannot get the infected stone out with surgery, so I am on long term suppressive antibiotics.

My doctor also said that due to my history and test results, he believes my entire urinary tract is colonized with Enterococcus and its biofilm, so maybe my urinary tract could be shedding the biofilm?

This happens around a couple times a month.

Can anyone relate?

Hello!

I was just wondering if any of you randomly get cloudy urine with no infection (normal urinalysis) and then the next urine is perfectly clear. It usually always happens on my first urine of the day. I have no other UTI symptoms.

I do have kidney stones in both kidneys, one of which is suspected to be infected. We cannot get the infected stone out, so I am on long term suppressive antibiotics.

My doctor also said that due to my history and test results, he believes my entire urinary tract is colonized with Enterococcus and its biofilm, so maybe my urinary tract could be shedding the biofilm?

This happens around a couple times a month.

Can anyone relate?

Hello!

I have a 6mm kidney stone that my doctors and I believe are infected with Enterococcus, as I keep getting UTIs over and over and over with that bacteria despite not being sexually active (I am 33F for reference). As soon as I stop the antibiotics, the infection comes back.

I had two lithotripsies to try to get the stone out. Both failed because it was too deep in my kidney. I am not a candidate for PCNL, as the stone is embedded deep in my kidney tissue, therefore the complex stone surgeon at the teaching hospital said that to get it out, I would need a partial nephrectomy and that would cause more problems than it is worth.

Therefore, he sent me to infectious disease who put me on long term antibitoics, for life - Amoxicillan.

I have already tried: 3L of water per day, cranberry anything, Uqora, Macrobid, Hiprex, Moonstone supplements, Interfase Plus, Kirkman Biofilm defense, Chanca Piedra, lemon water, extreme hygeine precautions, abstinence, vaginal estrogen, probiotics (Renew Life and Visbiome). Nothing worked.

Has anyone else been in this situation?

The doctors did say that the bacteria are not only in my stone, but have colonized my entire urinary tract and created impenetrable to antibiotics biofilms, of which there is no cure and that I would need to be on Amoxicillan for life to suppress the bacteria.

Had anyone else had to deal with something like this?

Hello!

I was wondering if anyone had my same experience.

I am 33F, and have had severe CUTI problems my entire adult life (once I became sexually active) that have basically ruined my life, as it triggered another disease called ME/CFS, which is rare.

After 16 years, we finally figured out what was going on. I had to see many, many doctors and finally saw an infectious disease doctor at a large teaching hospital near ish to me who believed me and would treat me.

Ive had an abundance of Enterococcus positive cultures in my life, but a lot of times it was not caught on the culture and was found by PCR testing. I would have extreme UTI symptoms, a clean urinalysis and culture, but would test "high" for Enterrococcus on MicrogenDX and/or Evvy. Ampicillan would always get rid of the infection.

Ive had to be hospitalized a few times for pyelonephritis, which confused the doctors because I am in what they call an "immune exhausted" state, per my doctor. This is where the immune system stops making a proper response due to how chronic the infections are, so my white count was never elevated and I never had leukocytes in my urine.

Anyways, the infectious disease doctor told me that my entire urinary tract is colonized with Enterococcus and its biofilm. He said there is no way to get rid of the biofilm (Ive tried the Kirkman and Interfase Plus supplements), and that I would need to be on long term antibitoics, likely for life as there is no cure for eradicating biofilm. He said the only way to get rid of the infection would be to take my entire urinary tract out, which is obviously not possible.

Other things Ive tried that did not work: 3L of water per day, cranberry anything, Uqora, Macrobid, Hiprex, Moonstone supplements, Interfase Plus, Kirkman Biofilm defense, Chanca Piedra, lemon water, extreme hygeine precautions, abstinence, vaginal estrogen, probiotics (Renew Life and Visbiome) Has anyone else been in this situation?

For transparency, I also have a slow draining kidney due to a birth defect and kidney stones, although both the stone doctor and infectious disease said even if we took the stone out (we can't - it is embedded in the kidney and would need a partial nephrectomy to come out), it would not matter, as my entire urinary tract is infected with biofilm.

Thanks reddit!

I became disabled about a year ago, and Im finally at the point where Ive started being able to do a little bit more! I had been struggling/a bit down lately due to the disease and medication changes, so I thought a switch 2 and a cute game could be a good distraction. I needed something light and played Pokémon when younger and loved it, so the first game I bought was Pokopia.

I just started playing and am SO happy. I thought Id like it but I didnt realize how much! It is soooo fun and cute and the nostalgia is real! Im so excited to keep discovering more. This is truly helping me during a really hard time, and has already brought me so much joy. Im so appreciative! Maybe this will be my gateway game to become an actual gamer! :)

Although now Im worried no game will ever live up to this, haha

TLDR: I’m mostly couchbound and use a wheelchair. I left the house for a short doctor’s appointment, felt fine during it, but still crashed for days afterward. I’m confused because every time I leave the house, even when calm and careful, I get awful PEM and don’t know why, despite doing nervous system work daily.

Hey everyone,

I would describe my baseline as couchbound. I can stand/walk some, but am very limited. I cannot cook, shower standing up, and getting food from the fridge is a hit or miss. When I go around my house, I use an electric wheelchair. I seem to be unable to leave the house and here is why:

On Monday I had a doctors appointment that I had to go to. I feel like I took every precaution I could. I did not pre medicate because I truly thought I would be fine - I had been doing quite well for me beforehand. I thought the appointment went well. I did not expend any more energy than I would have if at home due to my wheelchair. I was in and out. I had no symptoms during the appointment.

I was not anxious going into the appointment at all, and I do nervous system work every day. I did not even feel the need to say "this is a safe activity, etc" because I genuinely did not think I would crash at all and told my friends and family that. In general, I have a very positive disposition, although when I crash one of my symptoms is depression.

Anyways, I crashed. Hard. It is Friday and I feel like a corpse and this nonstop PEM is killing me.

So my question is, why am I crashing so hard every single time I leave the house? All of my biggest crashes (weeks long) have been when I left the house, despite being happy, not worried about crashing, doing nervous system work daily, and not expending more energy than I would at home.

Any advice would be appreciated. Thanks!

Did anyone's ME/CFS cause blood sugar issues? I get a basic metabolic panel drawn each month (fasting) and for the last 6 months its just trended lower and lower to the point where it was 60 the other morning.

I know ME/CFS is a neuro-immune-endocrine disorder and my RAAS system is already messed up (low renin/aldosterone/sodium) but this is new.

Diabetes runs rampant in my family and my mother has reactive hypoglycemia, fibromyalgia, and pre diabetes so maybe Im just developing a new problem.

Hey everyone! Looking for some advice. Here is my sleep situation.

I do not have insomnia. I can fall asleep without issue and get 8-9hrs per night usually. Sometimes I will wake up at 4AM and cannot get back to sleep. However, my sleep quality is atrocious. I feel as if it is light, fragmented, and completely unrefreshing. I have bad dreams every night and wake up feeling like I did not sleep.

This is despite having the best sleep hygiene that I can. No screens after 9pm, I eat a whole foods, super healthy diet, go to sleep/wake up at the same time per day, keep a consistent routine, and am generally happy/peaceful.

I do not take any sleep meds because I do not have issues falling asleep, it is only the quality.

Also, as I recover, my sleep quality seems to have gotten worse?

I am hesitant to take more medications because I am on soooooo many. I thought it could be a medication, but this issue has been pretty consistent for my entire 1.5 year illness, regardless of the medications I take. But I am still open to suggestions! I have tried over the counter things like melatonin and that did not do anything to help. I have also tried THC/CBD and that did not help either, although very relaxing haha.

Thanks for your help, happy Saturday!

I have not tried many medications, but by far the most effective medication for me has been fludrocortisone.

I had very severe OI. I did the NASA lean test and literally fainted (vision caved in and collapsed to the ground) 5 minutes in after my HR doubled. Sitting upright made me feel so sick, and forget about standing. For 3 months, I never sat upright or stood once. I was horizontal 100% of the time. To go to the bathroom, I had a commode by my bed and pivoted from my bed to the commode and rested my head on the bed while using the commode.

I had such intense salt cravings and was always thirsty despite drinking 3L of water per day. I would take salt pills, and my food was basically salt with some food flavor because it was so salty. Despite that, my sodium was still on the low end of normal! My kidneys were just not retaining salt. My parents were aghast with how much salt I was putting on my food and eating.

Also, no matter what I did, my blood pressure was 90/50. If I stood it went even lower, which is why I fainted and could not walk due to dizziness.

After fludrocortisone, my blood pressure is now 110/70! My constant brain fog and headaches have massively decreased, as I suspect my brain was not being perfused. No more crazy salt cravings or always feeling thirsty. I can sit upright for long periods and stand and walk more every day!

Now it is not my OI that is my limiting factor, it is other symptoms that I am trying to tackle. But I am doing better every day and that never would have happened without the fludro. I was really scared to take it at first because it is a steroid and those can have nasty side effects. I am usually hypersensitive to medications and get all of the side effects, but have had 0 side effects from this medication and I am on a higher dose now. Clearly my body needed it!

Honorable mentions:

Ivabradine (OI)

Gabapentin (nerve pain - life saver)

Benzos/clonidine (for adrenaline rushes - these also saved my life)

Hydroxyzine/Compazine/Zofran (nausea)

I would love to try a SGB, Valtrex, LDA and Rapamycin next! All of the studies coming out about Rapamycin are so exciting! I would love to try LDN but I still take opioids when I get episodes of severe pain so when I get this pain under control (getting a nerve block/maybe surgery soon), I want to try that too.