This thread is for voluntary sharing of “life” with health issues one has to or expects to live with for the rest of their lives. It can be venting. It can be more basic “matter of fact.”
My goal is for any of us to feel more “normal” by realizing we’re not the only ones having to deal with “something” and allowing us to share without annoying those we live with who don’t want to hear about it over and over again - and can’t relate anyway. Those without interest (with or without issues) certainly don’t need to read it.
For me… I get to live with left side trigeminal nerve issues in my head likely due to brain tumor radiation. It makes the left side of my face always feel numb under my eye down through my upper jaw. On bad days the ear has sharp pain to it. That pain comes also is made stronger by vibrations, wind, and cold. Then too the upper jaw is sore like there’s a tooth problem, but there’s no tooth problem. Pain killers do nothing.
I also always get to listen to my pulse unless there’s loud enough noise to drown it out, but I’ve mostly gotten used to that. I live with left/down double vision issues too, but have gotten really used to that at least.
Then there are lumps under my left armpit (checked out a couple of years ago via ultrasound) that are getting more numerous. They haven’t killed me so they probably are benign.
Plus now there are lumps in my neck that are getting larger and can be painful to touch. Med school lad tells me that one could be thyroid - he’s not sure - so maybe that one can be fixed when Covid eases.
Needless to say today is not a good day for any of them - they’re always there, but some days are worse than others. It gets frustrating. Anyone else want to share to confirm what I think is reality that many (most?) people “get” to live with something as they get older? Can we help each other feel normal vs “special?”
Please don’t put off having the thyroid lumps checked out. Cancer doesn’t take a break for COVID and putting off diagnosis and treatment can literally be a fatal mistake.
Daily headaches - I’ve had them since I was little. They’ve run lots of tests but never found anything of concern. I’ve tried different meds. Excedrin works the best, but I know I take too much.
Tinnitus. Really, really bad. It’s definitely depressing thinking it will never go away. I saw an audiologist who tested my hearing, which was fine. She said there’s nothing to do about it.
“Blurs” in my left eye. The way I describe it is it feels like there’s a little “sleep” in my eye, but rubbing my eye doesn’t make it go away. I saw an ophthalmologist recently - he gave me eye drops which didn’t help. He said it could be a clogged oil gland. It’s mainly annoying when I’m playing a complicated piano piece and have to look up at the music and back down rapidly.
Tinnitus, not terrible but annoying. Kind of used to it.
Way more migraines during covid (Me to doc…I’m having more migraines. Doc: Join the club). Blue light blocking glasses have helped (too much screen/zoom time), as has nearly eliminating caffeine.
Fortunately (in a way) it’s more likely that the thyroid will have died due to the radiation. It was more or less promised to me it would happen over time. It’s fixable with meds, so no big deal.
It may be unpopular overall, but after seeing my mom endure cancer I’ve already told my guys that if I get it I’m just going to let it take its course rather than going through what she did. When I consider QoL to be done, my life will end. I’m never going to tell anyone else they have to agree with me. To each our own.
I, too, have tinnitus. When I was a kid I thought I was hearing the electricity in the walls. Now my family thinks I’m deaf, but that’s not it. It’s that the ringing in my head is louder than many things they can hear.
Two severely blocked coronary arteries, including the left anterior descending (aka widow maker). I take a bunch of drugs, watch diet/weight, and minimize mental/physical stress. Fortunately I’m asymptomatic.
Seasonal/Daily Allergies - more of an annoyance vs deadly. I have learned to manage pretty well with daily meds, but I still always have some type of pressure behind/under my eyes => “headaches” (more like a face ache)
The nerves in all my fingertips are shot due to a bout with mild frostbite years ago. Anytime I wash my hands, they burn.
I’ve had floaters in my eyes as long as I can remember. I rarely notice except driving on overcast days if I think about it. You can add the usual age related cruddy eyesight requiring bifocals or monovision.
Permanent damage in my ATs from decades of hard running.
I had a string of fainting spells when I was 41 that were triggered by an unknown heart condition that caused my heart to stop beating. I had a cardiac pacemaker implanted the night of DD’s first school dance. We love to travel, go to museums and historic sites, and see a ton of concerts. I hate having to explain my issue to various security folks, be subjected to pat downs, or sent to different lines away from the people I am with. I have to remind myself how lucky I am to be able to even do those things because the 5 year survival rate of those with my condition is 47-50%.
I have an autoimmune disease called Sjogren’s Syndrome. In general, your cells attack your moisture-producing glands. My main symptoms are dry eyes and a dry mouth. The dry eyes are a huge problem – I use preservative-free eyedrops probably 15 to 20 times a day. I’ve had this since around 1988.
I also have significant osteoarthritis in – get ready for it – just one finger! It’s the middle finger of my right hand, which is no fun. It can be extremely painful, so I use Voltaren (a topical pain medication), which helps somewhat.
I don’t have Sjorgren’s but I do have terrible dry eyes from occular rosacea, blepharitis and Meibomian gland disorder - triple whammy! I have been SO frustrated with my eyes and recently took the plunge (not covered by insurance) and had my ophthalmologist make autologous serum eye drops (made from my own blood). I just started them 6 days ago and I feel like it is miraculous! Not only do I not “feel” my eyes constantly, but they haven’t been this white in years. Fingers crossed it continues working.
I’ve been googling this, based on your mentioning it. It sounds extraordinarily promising. I wonder why my eye doctor has never even mentioned this treatment! What’s the cost to you??
My ophthalmologist is a dry eye specialist and she has been suggesting I try this for a couple years. I have tried every eye drop out there including prescription Xiidra.
You can google Autologous serum eye drops (ASED) and find loads of info. I was very skeptical but had been feeling SO exasperated by the constant eye burning/irritation and redness that I decided to try. I have about a 3 - 4 months supply (they have to remain frozen until you use them and refrigerated while using) and it cost $425. Not cheap but, as I said, I am desperate! My doctor makes them right in the office so it was very convenient for me.
If you have any other question, feel free to PM me.
I have truly been amazed by how well and quickly these have worked for me! I hesitate to even type that because I am so scared it’s too good to be true…
Meant to add, my doctor said the goal is to get off these drops after a few months. So the cost isn’t forever. Fingers crossed that is true.