I’m wanting to get diagnosed for ADHD myself, I feel like after reading about symptoms and whatnot, I exhibit most of them. I’m not referring to the trendy “haha I’m so bored I must be adhd” type of diagnosis or symptoms. Anyhow.

My question is, what was it like for you pre-diagnosis. What were your symptoms? I’d like to compare my life to yours and see if there’s similarity.

FWIW, I am currently waiting for a diagnosis which should take about a year and a bit to come through, yay free healthcare.

Not being able to take stimulants... I feel you. I wish I could. I feel great for the first day or 2. Then my blood pressure goes up and my anxiety goes up. I'm 39, so I've had some time to develop my own tricks for certain things, but man a good medication sure would help

Ritalin was absolute magic.
Alas, my financial condition didn't allow me to continue it.

I have ADHD as well. Ritalin is very cheap where I am. Have you tried finding a generic version, or maybe have it made in a compounding pharmacy?

Alas, with my other health issues, I'm no longer able to take stimulants of any kind

What are those?

I just read your AMA! That story about how you discovered the saddle clot (did I get that right?) was intense.

I fought with the non stop post nasal drip for years. For me, it turns out I was becoming allergic to some of the foods I was eating. It took knocking my food intake down to just one ingredient at a time and documenting what it did. I then cut out the foods that were giving me floods of mucus. It's been a huge relief and has made me less reactive to other environmental allergens. I don't know what is causing your issues, but allergies to food or environment is one possibility. I wish you the best of luck!

I recently started testing tinnitus treatment and masking devices that were prescribed by my doctor. It changed my life. I wrote about it here.

I have tinnitus too. Mine is from going to too many concerts as a teenager and young adult with no ear protection.

I've got ADHD too, and it sometimes feels connected. It's never silent in my head anyway, but the ringing sometimes is deafening.

Chronic post nasal drip affects me as well, you may want to look into GERD, as that was my issue. I used to think that it comes with heartburn, however apparently it isn't uncommon for the only symptom of GERD to be post nasal drip.

I've cut out dairy entirely and have seen a huge difference. When it gets bad or I've eaten a lot of greasy food I'll drink some water with a small amount of baking soda, which settles the stomach and stops it from getting worse.

I've also heard that speech therapy can help with a chronic cough surprisingly enough (found a link to the study)

Have you ever had an injection of steroids in your eardrum? I was given an intratympanic steroid injection for tinnitus and for hearing loss. It dramatically improved my hearing back to parity with the other ear, and improved my tinnitus. (Hard to say if the tinnitus improvement was exclusively due to getting my hearing back to normal, thus masking the tinnitus, or if it directly helped the tinnitus—but either way my quality of life dramatically improved)

I have the same problem with mucus; it seems to come and go, and often went hand-in-hand with bad congestion. Now the congestion is gone and I spent a while with it not being much of an issue, but the mucus has come back with a vengeance. It's gotten so bad that it's beginning to interfere with other medical issues to become an even larger risk to my health because it's affecting my sleep badly. It's not fun to wake up with your lungs full of phlegm.

I just recently got a CT scan done and I'm kind of terrified because the results came back recently with an extremely vague "Sinus disease" finding by the technician with little detail other than that it appears to be linked with some sort of dental issue. The doctor who referred me sent me a message that said he was forwarding the information to my "ENT Surgeon" which leads me to believe that I'll need surgery to get it resolved and that's kind of scary to me because regular dental surgery is usually bad enough, and I honestly have no idea what the guy is going to recommend.

I’m so sorry you had to deal with those thoughts and feelings. Maybe telling your doctor that this BC helped the mental/emotional side of things can help him choose a similar BC for you to switch to?

I have a good friend who is a Physical Therapist specializing in Women’s Health, she runs a TikTok channel about that gives good, solid, evidenced based information and advice. I’m not telling you this as her friend trying to get her new followers, but as someone recommending you a good and accessible source for information that might help you.

I feel like I’m heading in this direction toward perimenopause. I’ll be 40 next week and already starting to see the changes. Periods becoming a little less predictable, and I’m getting hormonal acne now. My moods can be volatile leading up toward the first day of shark week. I’m on no birth control, but I am considering it just so it can help with the acne and maybe the mood swings I get the week beforehand.

I really understand how you feel. Psychiatric medications are really hard to work with your doctor on. Normally your doctor prescribes things and you take them, but when the symptoms are your mental health, it really is more of a team effort finding the right dose.

You can ask to stay on it. Your emotional health is just as important to consider with things like this. There are other ways they can deal with bc-related spotting. I once had a 3 month long period and my doctor said my uterine lining was too thin which was causing bleeding. A week of estrogen fixed it and I haven’t had issues since.

If your doctor does take it away, you know what works! You can talk to a psychiatrist or find a different doctor and tell them this worked for me before, I’d really like to try and make it work again.

Well, I have had this all my life and never knew until reading this that it isn't ow everyone experiences vision. Wow.

Fascinating. I have this. I never really understood that it was a thing until I read your comment. My vision is scintillating—everything sparkles with colorful noise—but I never questioned it and had assumed that it was normal and natural. How could I otherwise when I had it all my life, like how water is natural to fish. But now I learn that it is abnormal.

I have/had this. I have chronic neck pain and migraines, and during an acute episode of neck pain I started having visual snow, most noticeable at night. Mild to moderate, pretty weird and freaky when I didn't understand it. Thankfully, as I got treatment for my chronic pain, my migraines have ceased and the visual snow has mostly dissipated. I occasionally get it when I'm tired or having a flareup, but it's mild enough to not be a problem for me.

I have this as well. Many of my opticians had no idea what it was and eventually I found one that did

I was diagnosed with T2 when I was 25. I’ve been husky since 5th grade, but never obese to that point. I was starting to feel super tired all the time and I finally got a job with health insurance and was able to get it figured out. I’ve been on a roller coaster of trying to get it under control since but man it’s tough. There have been times where I did keto and lost 50lbs, rode my bike 10-40 miles a day, and still couldn’t shake it. So then there were times were I got depressed and rolled up to 285 and just didn’t give a shit. I’ve been on just about every med under the sun short of Ozempic. I’m 39 now and I feel I’ve just finally gained some control over it. I really had to come to terms with not having excessive carbs in my life. Keto gets you so far but you can’t do it forever - my cholesterol and fat numbers were insane and it’s just mentally tough. Even when I was working out like crazy and losing weight I was still drinking 4-10 beers a week, eating French fries every few days, snacking on chips, downing whole pizzas. I’ve recently been able to break up with alcohol and carbs and it’s been a game changer. It seems like such a no brainer but it’s hard to really comprehend how many carbs and sugar a normal person eats daily you have to cut back for your health. And it really is an addiction. I was basically living a normal (even excessive) carb life while being a diabetic, and compensating with insulin. Now I’m being realistic about it I can’t do that. 2 months ago I was taking 170 units of insulin a day plus pills. Now I’m taking ZERO insulin. Just Jardiance and Metformin. I can definitely feel like my insulin resistance has gone way down. My A1C came below 8 (6.5!) for the first time in almost two decades! I was hovering around 11 for so long. Anyway… it sucks not downing massive amounts of pizza and fries, but my health is better, I look better, and I just feel better knowing I have some control over it finally. Anyway… it doesn’t seem like I’m gonna shake the pills anytime soon, seems like even T2 can be with you forever, but it doesn’t feel so hopeless now.

I’ve had an intractable migraine for 11+ years now, complete with light and sound sensitivity.

On the opposite end of the spectrum from you, I have a dx list as long as my arm (only a slight hyperbole). Hypermobile Ehlers-Danlos Syndrome, Mast Cell Disorder, POTS, Increased Intracranial Hypertension, pre-diabetes, Chronic Migraine, TMJD, chronic pancreatitis, and a Pituitary Tumor.

I haven’t tried for official disability yet, but I may have to soon depending on the my mom’s company’s requirements for allowing me to stay on her insurance after I turn 26 next year. I’m hoping, if I do have to apply for disability, that between being unable look at a computer screen for more than an hour without my eyeballs wanting to shrivel up and die, unable to lift heavy things with dislocating joints, and being unable to stay awake for more than 4-6 hours at a time it’ll be an easy decision.

What kinds of meds have you tried? I’ve seen a lot of stories similar to yours hanging out on EDS and chronic pain support groups, and one of the things that’s been able to help many is Low Dose Naltrexone.

I'm sorry, chronic pain sucks. I'm currently recovering from chronic fatigue syndrome. Not exactly the same but related.

Have you read any work by John Sarno or other mind-body teachers? I've found that their approach is helping me a ton. I went from only being able to walk 10 minutes a day to walking 30 minutes a day and lifting weights, albeit only 12.5 lbs at the moment.

I highly suggest checking him out if you haven't already. Here's an article from the NYTimes about him and chronic pain.

Hey, I'm sorry to hear you're dealing with chronic pain. I was going to post about my own, but I'll piggyback on your thread to keep them consolidated.

I received a chronic pain diagnosis last year, after suffering for about 10-12 years. My local medical system has a chronic pain management program that I was referred to. It was fairly intensive, about 6 weeks, combination of PT, OT, relaxation therapy, and pain psychology. It was very effective for me. I'd say my pain used to be like a 4-6 most days (and I was having several migraines a month), now I'm more like a 1-3 most of the time, and I don't get migraines anymore. So I'm very happy with that result and very grateful.

Prior this I had also tried multiple PT modalities, massage therapy, other medical specialists, etc for many years with limited/inconsistent results. My understanding from the program is that the past 20~ years has seen a lot of advances in pain medicine, and that not all health care providers are up to date with the latest knowledge, so it can be kind of a crap shoot.

Apparently, learning about how pain works is one of the most effective things you can do to reduce pain. Because, apparently, pain correlates very poorly with actual tissue damage. Pain is produced by your brain as a protective mechanism - and worrying that something is wrong with your body is a great way to make your brain want to protect it, so it's easy to get stuck in feedback loops. For me personally, learning that it was safe to "ignore" pain in most circumstances made it easier to return to normal activities, after which the pain reduced over time.

My understanding of the Sarno stuff (mentioned by another poster) is that it's largely not backed up by modern science. However there is some overlap in his ideas with modern pain management strategies, which is probably why some people find it helpful.

If anyone is interested, I'm happy to share some resources that helped me, but I'll leave it there for now.

Got the double whammy of doing a couple deployments to Iraq and being raised by an unmanaged BPD mother.

Mom is slightly chilled out in her later years because of therapy, medication (which she still tries to cycle off of every few months), ECT sessions (for depression?), ketamine sessions, and who knows what else. I mostly attribute it to having a husband who makes decent money now so she doesn't want to blow her life up too much because she's comfortable.

It wasn't until recently that I realized it isn't super normal to not remember most of your childhood.

Army stuff really isn't that bad for me. Some stuff that stems from survivors guilt and the normal stuff that comes from long term high stress situations.

My partner has really helped me through a lot of this mess. They're really the first person I've ever been able to open myself up to. Only took a decade to get me out of my shell and actually voice some kind of an emotional need to another human being.

I'm also fortunate to have a super chill job now. I joke that I have to check in with coworkers on whether to be mad about work bullshit because my work bullshit meter is broken.

I don't have it, but my uncle has narcolepsy, and I've seen how disruptive and challenging it is to live with. I just wanted to say that I'm sorry you're dealing with that, and I hope you find a way to manage it better.

I have N2. The diagnosis process was completely excruciating. I've never had such an extreme feeling of being mistreated by the "medical system." All the hoops I had to jump through -- it borders on abuse.

The stimulant shortage in the USA is having a huge impact on my life. I haven't been able to reliably get the medication I need to function at anything beyond the most basic level for about four months. It's hard not to hold resentment about it, since I have several sleep attacks per day.

Have you ever heard of Ehlers-Danlos Syndrome? Your post is riddled with EDS symptoms and comorbidities: IBS, MCAS, migraines, gallstones, SFN, and the ME/CFS itself. I know (IRL) one person with EDS that developed CFS after getting COVID, and there were some threads on r/ehlersdanlos a couple weeks ago on the topic of CFS.

I don’t have CFS, but I do have EDS and deal with a lot of fatigue.

Non-deadly chronic illnesses are always underfunded by researchers. Doctors don’t even want to treat the patients that have them because they’re frustrating, time-consuming, and there’s never an end — happy or sad. The other problem with CFS is that it’s a syndrome (a group of symptoms that together make up the disease) which means it’s probably getting under-diagnosed because many doctors are trained to look at symptoms separately and treat them that way, and because CFS often occurs (develops?) in people with a history of other health problems even a doctor looking to at all of a patient’s symptoms may focus on the wrong ones or the wrong grouping and not make the connection. POTS and EDS have all the same problems.

Ohey, I don't have to make the first CFS post! Not sure if I've ever said on Tildes that I have CFS/ME (among other things) — I'm very open about being disabled, but some people are pretty quick to dismiss CFS and I don't usually have the energy to argue with them (har har). So while I know it's good to be open to help combat the stigma and misinformation, sometimes I don't. But hey, maybe people will be cool in a thread about health stuff.

I've had it since high school, so nearly 18 years at this point. It's better than it was at first, but I'm limited to 2-3 hours of mental exertion on a good day (considerably less on a bad day), and... I'm honestly not sure how much physical exertion I can do. Things are cumulative, and combining types of exertion has a synergistic effect. For example, we recently had to move. I packed (with my mum's help) for about two hours on a Saturday, tried to do some more on Sunday but ended up in bed, and I was basically out of commission for a week. Feverish, heart pounding/POTS flare, brain fog, weak and achy muscles, etc. It was bad- turns out very mild exertion when combined with making lots of decisions is tiring. Hooray PEM!

I think PEM is the hardest thing for both lay people and doctors to understand. No, it's not just feeling a bit tired. No, it's not just deconditioning. No, if I push through it I won't get a second wind - I might permanently damage my health. No, exercise won't fix it - CFS patients respond to exercise in extremely broken ways, borne out by metabolic and 2-day CPET testing.

CFS (plus POTS and probably an underlying connective tissue disorder) has affected every part of my life since I got sick. I did manage to get a degree, but it took me 9 years and I was supported by my parents financially and practically (such as my mum doing chores in my apartment, driving me to early classes, and doing my grocery shopping). I now live with my spouse, who has do to most of the cleaning/laundry and all of the cooking. I also haven't learned to drive yet because the energy it takes is so great.

I currently work extremely part time hours (4 hours a week on average, down from 20) at a remote job unrelated to my biology degree, but honestly I'm perpeptually on the cusp of quitting because the amount of money I make (and amount of support I need from my spouse because I use so much of my energy for work) doesn't really make it worth it.

I wouldn't ever qualify for benefits, though. SSI would require divorcing my spouse and getting rid of my savings, and even if I had enough work credits and survived the application and appeals process, SSDI would probably only pay around $200/month, because it's based on my part-time work history; it's not made for people who were disabled before they could work.

Postural orthostatic tachycardia syndrome (POTS)

I've got some co-morbid stuff, but POTS is the main one that's been identified (finally got a tilt table last year). Basically my body is bad at combatting gravity; my blood pools in my feet/legs when I stand, so my heart rate spikes to compensate, which is tiring even when you don't also have CFS. It causes brain fog, and other things like gastro issues. Some people think you have to have fainting/syncope to have POTS, but you don't; I've never fainted. At most my vision tunnels in.

I've been treating it conservatively for a while, which compression socks/stockings to help push the blood back up to my heart and brain and lots of salt/electrolytes and water to increase my blood volume. This year I started fludrocortisone, which makes a noticeable difference in my brain fog when combined with these. I'm considering asking my cardiologist about adding something else that may help with blood pooling and such. Maybe mestinon. I'd also like to look into SFN and potential treatments, since I know it's common in CFS and POTS.

COVID risk

COVID has also drastically changed my life. My CFS and POTS are post-viral. Both are commonly seen in long COVID, and connective tissue disorders put one at higher risk for long COVID, too. I can't risk getting COVID, because I have no idea how it will affect me. Will my CFS and/or POTS get worse? Will that be temporary of permanent? Will I get a new post viral illness? All seem possible based on anecdotes.

It makes me angry that so many people are joining me in this illness because it isn't widely recognized as a COVID risk (for even healthy people) and because the government doesn't care about disabling millions. And it makes me angry that I am supposed to risk making my health worse every time I try to interact with the medical field - what's the point in trying to find additional medications and tests that might help if I catch COVID from a maskless doctor?

Having to navigate healthcare when you have a poorly understood, underfunded, and underresearched illness is hard enough...

My daughter (~50 yr old) has/had CFS and now incipient MS; it's been associated with the Epstein-Barr virus as you probably know. I agree and confirm that it's quite devastating, and many people (including me for some time) simply don't realize that, partly because it has no visible symptoms, and partly because few physicians know anything useful though that's starting to change, I think.

My daughter has mostly recovered from being very seriously impacted, by taking a year-long course of valacyclovir in a fairly high dose. She's still not as energetic as I am (~80 yo) but she's hugely improved on the CFS side, though MS is still lurking.

I guess I shouldn’t really be surprised there’s at least one other person with CHF here, but we definitely got there through different circumstances.

I noticed in November of 2018 that I was having trouble with deep breaths, and I was coughing a lot. Went to the doctor and was diagnosed with Pneumonia. I also happened to get an Apple Watch for Christmas. The Pneumonia cleared up with antibiotics.

The following February I went on a business trip, and driving back from the airport I noticed that I was having breathing issues again. And then within the next few days the coughing started again. I spent some time wondering if it might get any better or if I needed to go back on antibiotics, until my watch notified me that I spent an entire day with my heart rate above 130. A call to a nursing service provided by my insurance told me it was probably a good idea to go to the ER.

They pretty quickly detected Pneumonia, but they checked me in to the hospital proper and got quiet about what else might be going on. The next day one of the nurses mentioned heart failure in passing, but I assumed she was mistaken. Then they scheduled me for an Ultrasound, and the tech was super friendly and talkative until about half way through the procedure until he went silent and stony faced. That was pretty much the moment I knew I had heart failure. Doctors confirmed it later on that day, but exhaustive testing wasn’t ever able to find a cause. My initial EF was around 40%. They kept me in the hospital for a few days to get water out of my system, and discharged me with a Zoll Life Vest and a bunch of new meds. There wasn’t really any sort of long term plan discussed, but the doctor said if we weren’t able to get my EF up with meds then I would probably need an internal defibrillator. I went on short term disability, and got to work on my TV and Video Game backlog.

A few weeks later I had a stroke.

My wife and I were getting ready for bed when it felt like someone switched on maximum motion sickness. I stiff-armed her out of the way and cradled up to the toilet, and proceeded to vomit for about an hour before she called 911. I kept vomiting until an ambulance arrived, and until I got to the hospital, and for a few hours after that. I was eventually diagnosed with a stroke in my cerebellum in a section that appears to be directly related to peripheral vision, motion sickness, and proprioception. I’ve functionally lost the ability to use my peripheral vision, so I have a lot of trouble with a broad range of activities. A lot of games cause nausea now, and driving is almost sure to make me feel horrible, although I still force myself every once in a while. For that matter just riding in a car can do it, even if i’m not driving. I also needed a cane for a few months.

Sitting at a computer for long times started to become a problem. Walking up and down stairs became an ordeal. Aphasia started to happen. Other mental problems started nagging me. Short term disability turned into long term disability. We realized that our current standard of living wasn’t sustainable, and talked with my parents about moving across the country to live with them again. When I mentioned this to my doctor, he decided he wanted to implant a defibrillator before I moved, which we went ahead with. He also went out of his way to find a cardiologist near my parents and get me set up with them. I got on the schedule to meet with them but it would take a few months.

After some time in my parents’ basement the HF felt worse and worse. I no longer had enough energy to do anything but walk to the car. Even walking upstairs for dinner took a while to recover. On July 4th my parents and my son cooked burgers and hotdogs on the grill, but I felt full immediately and felt really unwell after. I took a shower to try to see if it might help improve a bit and I vomited in the shower and still felt terrible. My wife decided to take me to the ER.

Tests showed I was not in great shape. I was in liver failure and kidney failure, and the doctors weren’t very positive about my prognosis. After a day or so I somehow pulled out of the organ failures, but a heart catheterization revealed that my EF was down to 15-20%. I went from “need to see a cardiologist for treatment soon” to in the Cardiac ICU, exhibiting irregular heart rhythms, and in need of immediate surgical intervention. It was determined that immediate intervention meant implanting a Left Ventricular Assist Device if I didn’t die first. They scheduled me for implant, and the night before my surgery the bad rhythms got bad enough that they decided to try to shock them back into shape, first with my Internal Defrib and then with paddles. Like the organ failures before, nothing worked immediately but eventually my body just decided it would stop. The next day I got an LVAD.

It’s 4 years later. I’m on a shocking amount of prescription medications. I can’t fully submerge myself in water. And I have a cable that punctures my lower abdomen and runs my heart. My heart hasn’t improved. The hospital’s implant/transplant team still monitors me constantly, and helped me get on social security disability, which allowed us to at least move out of my parents’s basement. I’m pretty much an invalid.

I don’t like being so negative about things, but this is basically the best it’s gonna get. I’m not pursuing transplant. I developed heart failure at 37 years old and we have no idea what caused it. Now I’m 41, am a stroke survivor, have a host of mental issues, and reddit just barfed all over itself.

But hey, I got a Tildes invite today.

Oh man, I feel this.

I had really bad cystic acne (much deeper in the pore, turn really red, large, painful, and no white head so you can't even relieve the pressure) in high school.

My family doctor, at the time, was definitely a pill pusher type and happily wrote me a prescription for Accutane. It was a bit controversial at the time, given reports of teens who started Accutane and later committed suicide (but it seems pretty obvious that teens going to the doctor for acne treatment might have other problems with self-esteem and such).

The side effects I experienced were really typical and manageable—albeit annoying—and they all subsided shortly after finishing the treatment course. The main ones were chronically dry/chapped lips and dry skin (particularly on my back).

The best part was that, after three months of Accutane, I was virtually acne free for about 15 years! I would still occasionally get a little one, here and there, but very manageable.

About 20 years after finishing the Accutane, I started to get the occasional cystic one on my jaw line, again, with increasing frequency, as well as other breakouts on my face and occasionally getting one on my head or back. The doctor had told me that the Accutane would be effective for 10-15 years, and for most people, that will get them through the worst of the hormonal acne, but that I might otherwise need a second course down the road.

But my original doctor had packed up his practice and moved to another state, so I got a referral from my primary care physician for a dermatologist. I explained to her what my case history was and, since I tolerated it well last time, she had no problem having me do another course.

But I would highly recommend getting the dermatologist referral and don't suffer in silence! Accutane does have some risks (so don't withhold any side effects you're experiencing because they could be signs of other issues) but you'll discuss those with the doctor if they think you're a good candidate for it. If you are, then you'll likely have to do monthly blood panels during the treatment to make sure it's not over-stressing your liver, but the prospect of not having to spend all of that extra time and money on skincare (which feels futile) and being able to look in the mirror without only seeing those red spots is really worth the inconvenience for a few months.

So, seriously, get the dermatologist referral. IIRC, you're also in WI, so feel free to PM me and I can tell you where I went in case they're also an option for you.

Hey, I commented about narcolepsy/hypersomnia on this thread. I just want to let you know I believe you and know how horrible it is to have sleep impact your life in this way. I’m sorry you had to go through all of that, but I’m glad you ended in a place that you can handle things.

There are breakthroughs in sleep science every so often. Xywav is a medication that was recently approved for narcolepsy and IH, and apparently people feel cured on it. I have hope that in 5-10 years there will be a cure for issues like ours.

I'm sorry you're going through this. I am currently trying to help my adult child who is in an identical situation. About a month ago they admitted to not taking their meds and it explained a lot of the negativity that I was hearing. While I waited for therapeutic levels to come back, I texted memes and links hourly and hope that they would respond to the content so I'd know they were alive. I tried to be helpful. Then the doom and negativity neutralized after a couple weeks. They're continuing their job search process and getting interviews but not being called back and I'm sensing the spiral starting again and if I could take away their pain I would. I feel like if they had a little more insight as to how bad off they are with depression and OCD they might ramp up their counseling schedule or find a more appropriate one. But I feel like their willingness is flagging and I don't know what to do.

It feels like everything I do/say is wrong and/or critical. They're my baby still and I will never not care about them even though their disease makes me angry. We haven't had a real relationship in years. I'm tired, too, and I manage my own diseases. I have other kids that need me too, my dog, relationships I want to nurture, and personal goals.

I'm so tired from the worry. I work in psych and I know what getting better looks like and unfortunately they are not it. I am a font of help and care. I wish they could avail themselves of that help and care.

Someone somewhere cares about you deeply. If not for your own sake, for them-- bring them a cup of coffee and ask them how they've been. Have a conversation. It will at least get you to tomorrow, and tomorrow might be better than today. I wish you good things and a sweet hug. You're worth it.

I dont have cancer but having been my mothers caretaker through her cancer, I feel like there's so much that goes into cancer treatment that most people never know. I'm glad you are doing well now and I wish you the best.

On a somewhat related note:
Today I went for a colonoscopy after having bloody stool. They found 2 pollups (now removed) and then a 5cm mass. After the colonoscopy they sent me to the local hospital for a stat CT. I’m very concerned, as it seems likely malignant, but I won’t know for a few days.

I’ve always had an irrational fear of dying young, so each time I’ve had a medical procedure I’ve assumed something bad would happen. So this almost felt like “Well, it finally happened.”. Obviously I’m trying not to get ahead of anything, as it may be benign and even if it’s not there are treatments. Just a scary day for me.

Can you describe the fatigues? Is it like your body doesn’t respond or is it mental fatigue too? I looked up Gilbert’s syndrome and fatigue is a symptom, but it’s possible you have a sleep disorder on top of that. I recommend you take the epworth sleepiness scale test and take that result to your primary care doctor and ask for a referral to a sleep clinic.

I bent over to change a diaper and when I got up, well I couldn’t get up.

That sounds like me, I had terrible back problems for years and had times when I was a right angle. What saved me was doing tai chi three times a week. It's built up my back strength so I really don't have problems any more. I guess tai chi isn't the essential part, it's the regular whole-body exercise, so yoga or anything similar might be just as good. It actually took several tries before I found a tai chi teacher whose style worked for me, but it has saved me so much pain. I'd also had four operations to fix a recurrent problem in my wrist joint, but since doing tai chi my wrist has been fine; it's the building of all-over strength and flexibility that have made the difference.

It opened my eyes to what people with chronic health issues experience

Several people in my family have different chronic issues (hashimoto's; interstitial cystitis; ulcerative colitis; and ms) so like you I'm very grateful for my fortunate health.

Snap! What meds are you on? I would get pretty constant mild flare ups until I was put on a biologic (Humira, first, then simponi when the Humira started giving me side effects) for something else (arthritis, related to the UC - apparently some people get lucky and get a trifecta of those two plus psoriasis). I can eat pretty much anything now; eggplant sometimes gives me stomach pains but not so bad that I can’t eat it.

I hope you don’t get to the colon removal point 🤞🏼 how’s your fatigue? That’s the toughest part for me but I haven’t found many ways to manage it yet except for doing less when it hits