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Ughhh! Another day, another 23 1/2 hours flat while I drink 2 gallons of water. Again. Same thing yesterday, same thing tomorrow. Been sick for 14 years now, disabled for 4, bedridden/flat for 1. 
My life are these 4 walls. At least I have TV and views of nature.

But still, UGHHHH. 
Waiting on surgical team in NYC to set the date for my hip. It’s been 3 weeks and nothing yet. Requested an update earlier. 
I think that they’re scared! I’m scared too! But my left hip is barely hanging on, pain resting, with meds is now 8/10. It’s new hip or wheelchair time. 
My gastritis returned several days ago, now coffee ground stools. Obviously bleeding. AGAIN. Should go to ED but what will they do for me? Disrespect me. Leave me for hours in dismal rooms. Only to say “see your doctor”. No thank you! I’ll treat at home with omeprazole and pink stuff. 
Sorry, usually cheery but I’m feeling down! It was bad before diagnosis last February. But that created hope! But now the long slog of reality is setting in. It’s not like I’m “excited” for the surgery. A month away from home, 8 days IP, and a not insignificant chance of poor outcomes. 


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@MaineDoug, sending positive thoughts to you from Australia.

I’m about to go to Emergency because I need help with my blood pressure medication. Hoping it won’t be too awful but it’s the only way to see a cardiologist in a hurry and my BP has been up way too high.

I hope you hear back about your surgery date soon.

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Sending you BOTH best wishes.  I hope your BP meds get straightened out at the ER* and they treat you well while there.  And Doug...I find that some days (or some stretches) are just inherently depressing.  Usually when there is almost nothing I can DO.  Feeling so powerless--and not just at the hands of a body that isn't working, but because of the so-called helpers who are not always very helpful at all.  Hang in there....I am sure you will see something out your window tomorrow that will cheer you a bit.  Most likely something that is not human!

*I was in the ER last week and the doctor came in and said: Oh, you have POTS.  Most doctors do not have it on their radar, but my best friend has it.  In my experience, people with POTS know a heck of a lot more about what they need, what helps, what works to alleviate their symptoms than any random ER doctor.  So....what can I do for you?  What would make you feel better?  

It was rather astoundingly wonderful.  I got saline asap.  I wish someone did know more than I do about what might help, but if they don't, it is a great second best when they don't pretend like they do.

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@Jyoti, that is wonderful to hear!

My trip to Emergency was pretty useless and I encountered a depressingly sexist female doctor. I apparently caused my blood pressure to go up by … wait for it … measuring it. Even though I have been measuring it every day for a year on doctor’s orders and it has always been normal. I guess quantum physics applies to blood pressure cuffs!

(For those that are not geeky about science, there is a famous experiment in which measuring or not measuring light travelling through a double slit makes it “turn into” particles or waves.)

Specialist has also been hopeless and it was his failure to warn me that this might happen caused all the worry in the first place. Apparently he thought it would go up in the evening but didn’t bother to tell me. I despair at his woeful communication skills but there is nowhere else for me to go.

Anyway, I have now pieced together what is going on and am no longer worried.

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Ughhh again! Another day, another two gallons of water, lying flat, waiting to hear back from doctors! 🤪

Sarah, so sorry to hear of your difficult day! I know it all too well. I had the same response once during a visit to the ED for hypertension! It’s amazing how bad they can treat you, like a product. Disappointing!  I refuse to go anymore, rather die at home. My BP is why I’m flat 23 1/2 hours a day! It’s the only way to keep the numbers reasonable! LOL, I’m in “hypertensive urgency or emergency” levels EVERY DAY! If I went to the ED I’d live there AND it would make my BP go UP! 😂

I was right about my GI bleed! I managed to stop the pain and Coffee grounds WITHOUT a terrible and expensive ED visit!

Thanks Jyoti! Glad that you had a good experience at the ED! It’s so unexpected that it’s a delight when it happens! But don’t count on it! 

Well, back to the drinking and lying flat! UGHHHHH

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12 hours ago, Sarah Tee said:

I apparently caused my blood pressure to go up by … wait for it … measuring it.

Yep! Said the same thing to me! And I was measuring it BECAUSE my PCP told me too! AND I was at the ED BECAUSE my PCP told me to go if my BP got that high again. THEN the doc starts fighting with ME! Yells “What do you want from me”! I calmly stated “I’d like to go home knowing that I won’t die on my wife tonight”? Then he finally says “Oh, I guess I can do that”! 
IT’s like we have to do their job as well as be the patient! 

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Oh dear, @MaineDoug, that is almost identical to what was said to me. At least your one did something, but yelling at patients? Really? I wish there was a medical Gordon Ramsay to go round and light a fire under all their butts!

It appears I am having an uncommon but known reaction to verapamil. It’s not fun but I’m not in danger ATM. Hoping it will wear off.

I’m glad your “insides” are better.

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So sorry @MaineDoug.  Same experience for me too but not as long as you have.  I don't even know where to begin anymore but just keep living one day at a time.  I am finding it very difficult to encourage others because I am barely holding it together myself.  It's like I'm watching life drain out of me.  I pray it gets better for you.

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  • 2 weeks later...
  • 2 weeks later...
On 10/23/2023 at 9:16 AM, Sarah Tee said:

@MaineDoug, how are you going this week? Did you get your surgery date yet?

Hi Sarah,

it’s been rough at my end. More delays. It looks like hip may be pushed to next Spring. If so, I’ll need to switch to Wheelchair until then. 
But I spent the last two weeks chasing down a new delightful issue. I had sudden severe hearing loss in both ears! I woke up and couldn’t hear my wife. It took making calls begging for help all week, but I finally got in for and emergency hearing eval last night. It was bad. My left ear is at 0%, right at 40%. Diagnosed with Sudden Severe Sensorineural hearing loss due to Rheumatoid Arthritis. Now waiting on emergency ENT call now. This is terrifying. I’ve already lost my work, my hobbies, my mobility, my vision, my teeth, it just goes on and on. 

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Ughhh and waiting for more Ughhhh!

Thanks Sarah and Pistol for the thoughts! There is a treatment for my hearing loss. It involves steroid injections into the ear drum. Should be fun!!😬

My hip is giving out. I can barely tolerate weight bearing for 40-50 feet a day with walker. And I get sudden severe sharp pain unexpectedly, causing me to yipe loudly, surprising my poor wife. I’m immobilized, deaf, under heavy brain fog! 
Hoping for change soon!

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