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On the continual decline physically, now mentally too

Discussion in 'Life Changing or Long Term Physical Illness' started by betteroffunknown, Oct 6, 2016.

  1. betteroffunknown

    betteroffunknown Well-Known Member

    Just over the past 3yrs it's amazing just how much my body has begun shutting down on itself. I can see this so clearly, but don't get why the Dr's aren't putting all this together. I've gone from being someone with NO physical health issues to them continuing to pour in, and I'm still baffled that the Dr's aren't questioning this continual decline. Some just refer to it as getting older, but it's not that. I can say that with absolute certainty mainly because age doesn't have anything to do with what I'm experiencing, but I am confused why it's happening now.

    All this began when it was diagnosed that I had a bad mitral valve which was causing mini strokes for me, but no one knew that's what they were until the bad valve was discovered. That took 3yrs and about 30 mini strokes in itself to figure out. The valve had been bad for 38+yrs, but was only just discovered in Sept '13. Talk about a shocker. On the bright side, learning about this and the issues it causes was such a relief to identify because finally there was actually a reason for the struggles I noticed when I was a kid. (Mainly with running)

    Six months after discovering the bad valve it was time for surgery to replace it. What I didn't expect during that surgery was my aorta dissecting. It's an exceedingly rare complication that can come from heart surgery. Leave it to me to experience such rarity. There is no pain associated with the dissection (it's still dissected), but scary enough is the fact that there are no symptoms to let me know if it's actually getting worse. The only way to tell how it's doing is via a cat scan.

    John Ritter (the actor) passed away from his aorta dissecting. It went un-diagnosed with him, and when it finally blew all the way he was on set. Those who were around him when it happened said he was in a LOT of pain when it happened. Sounds like something to look forward to, doesn't it? (Rhetorical question) Due to this issue, keeping my blood pressure in check is a must cuz it can actually make the dissection worse (high blood pressure also resulted immediately following the surgery while I was still in the hospital.), and I'm not allowed to do any major lifting anymore. I found this especially grievous for the simple fact I've always loved to challenge myself in that respect. Now I can't anymore. :(

    Then in Feb this year I was diagnosed with hypothyroidism, and as such was started on yet another med for that. A friend of mine who is extremely well educated with autoimmune issues told me a few years ago that I have the disease. I didn't dismiss her. Guess I just didn't fully understand it all. Well, when my thyroid went bad a different friend encouraged me to have them do the test for autoimmune cuz apparently they can do that when testing the thyroid. I asked them to do that test, but they refused saying there was no reason for them to check that.

    Then just a month ago I was diagnosed pre-diabetic, and it's quickly headed towards diabetes 2. What's weird is that I used to drink soda all day everyday for 23yrs, and was never even diagnosed pre-diabetic. Now I take much better care of myself than I did back then, but this is happening regardless. Apparently I do experience narcolepsy from all this now, too. It actually wakes me up in the middle of the night sometimes. I realize diabetes 2 can for the most part be prevented, but I'm not confident of that in my case. Knowing my life has been full of the unbelievables, and the fact that I exercise a lot and stay away from sweets (most of the time) and the simple carbs it's still happening regardless.

    In these 3yrs alone I've gone from being on NO meds to being on 14 of them. That's been a really difficult adjustment in itself because I absolutely hate meds. However, part of the 14 is the 3 meds I'm now on for mental health reasons. My mental health has really gone on the decline, and not just cuz I've experienced 4 major trauma's in 2yrs but the continuing decline of my health has contributed greatly to it, too.

    Three years ago, right before the bad valve was discovered, I was also diagnosed with arthritis in my lower neck. Most people will experience this in their lower back, but not the neck. Again, leave it to me to experience the less common things. During this 3yrs I've also been diagnosed with diverticlosis. It's not the 'itis'. That would mean an infection is present which is not the case - at least right now.

    I'm thankful the only pain I experience is from the arthritis, and even that's not all the time. The narcolepsy is as annoying as hell, but now I'm beginning to experience some pain in my feet as well. I have an appt in a week to meet with my primary doc (at her request), and I'm really tempted to ask her to take a serious look at all the sudden health issues I'm facing, and to tell me what she thinks of it because I know it's not all associated with getting older. I'm only 46, so I'm not all that old.

    How does one continue to cope with the apparent never ceasing onset of continual physical health issues? I'd always been healthy till all this. I find myself understanding less and less as time moves on, and I'm frustrated and discouraged.
    April Lynne likes this.
  2. smackh2o

    smackh2o SF Supporter

    Blimey that's a serious list of stuff in a short space of time :(
    You definitely need to tell your primary GP about all of these like you said. You may be better writing it down in timeline form so they can get an idea of how they have developed. It could be they are able to draw a comparison to one of the earlier ailments that could have caused the later ones and that may give them direction on much better treatments.
    Will you let us know how you get on next week?
    CandleLight and betteroffunknown like this.
  3. draws

    draws Well-Known Member

    Ask around everyone you know -- any groups in your area, Facebook groups, PTA, whatever -- for a fantastic doctor, maybe even a fantastic holistic doctor. The really great ones will have a reputation. Someone to help with the whole body system. I have a friend with a thyroid problem, and she gets care through her chiropractor and a doctor who actually listens to her. Keep looking to find the right one(s). Besides fighting for something better, I'm no help with the coping part.
    betteroffunknown likes this.
  4. betteroffunknown

    betteroffunknown Well-Known Member

    I was just thinking about my doc having requested to meet with me. I'm really not trying to jump the gun, but am a bit nervous that she's discovered something else and wants to talk to me about it. I really hope I'm just being irrational at this point, but could one blame me for being concerned there might be yet something else?

    @draws Holistic doctors are pretty common and increasingly so in my area, but afraid I don't know anyone to talk to about it. So I will have to trust somehow I'll come across one because honestly that's a route I'd prefer to take.

    I'm hopeful my doc will listen to me when I meet with her next Fri, though. If I can provide a good point for her to do something she does honor it. I think the reason it hasn't been done at this point is because it hasn't been able to be justified to insurance companies for the test, but with @smackh2o 's point about writing out a timeline, and plainly pointing out these things on the whole to her she may just be able to finally justify doing the autoimmune test. Not that I care to have another diagnosis mind you, but it would be useful and good info to have nonetheless.

    @smackh2o I'll let you know how next Fri morning's appt goes. It's such a struggle to have so many things to be dealing with now. Not used to all this yet, and not sure I want to tbh. Thanks for the suggestion, too. I hadn't considered doing that, but it's a great idea.
    smackh2o likes this.
  5. Frances M

    Frances M Mountain Woman

    I think that your feeling of jumping the gun is very reasonable considering all of the physical health problems. You're right, 46 is not old, I'm 48 and feeling my body's age after a life of being physically active. All I can relate to is the arthritis. I have early symptoms in my hands and knees. It does hurt. I hope your appointment goes well next Friday, I hope you find some answers and relief. xx
    betteroffunknown likes this.
  6. Butterfly

    Butterfly Sim Addict Staff Alumni SF Author SF Supporter

    @betteroffunknown Although not as severe, I had news that my health was deteriorating whilst I was on the psych ward. It appears that my HIV has worsened and I now need to swallow 2 bullets a day to keep well. It's such a kick in the teeth. I hope your doc can figure something out for you. Thinking of you xx
    betteroffunknown likes this.
  7. randomguy9

    randomguy9 Put's the "Pro" in Profanity

    I am proud of you for getting the help you need despite the medical issues. Speaking to your doctor is a great step.

    While I understan the concerns, hopefully they will all be addressable.

    The emotional pain of hardship... is understandable as well. We are here to help you with that.
    betteroffunknown likes this.
  8. betteroffunknown

    betteroffunknown Well-Known Member

    Well, I made it to the dr's appt on Fri, and certainly didn't expect what they had on the agenda. Apparently my doc didn't know they had told me she wanted to see me for a 'blood pressure check'. She wasn't too happy about it, either. She knows no medical professional can afford to lie to me now when my trust has been totally obliviated by them. (medical professionals, not my doc) Technically I was wanted in there for a very invasive screening which I was quick to say 'hell no' to.

    According to my doc, they have a file that enables them to keep on the preventative care road. Their computer notes when a persons next exam, shots, etc are due. Apparently this popped up for me, and the lady who called to schedule the appt obviously didn't give me the truthful reason for the visit. I told my doc they cannot afford to lie to me like that (or anyone else for that matter). I was lied to 5mon ago by medical 'professionals'. My world was totally turned upside down due to numerous lies told to me and about me then, and I'm not going to tolerate it now. My doc is planning to talk to the scheduling folks about it. My doc also happens to be the VP of the clinic I go to, so her words carry extra weight.

    Instead of doing the screening they were planning to do they did end up checking my TSH for my thyroid. My doc said she wanted it done sometime this fall, and since I was there and it is fall I figured they may as well make some use out of the visit by doing the test while I was there. Should learn sometime this week the results from that.
    smackh2o likes this.
  9. SillyOldBear

    SillyOldBear Teddy Bear Fanatic Staff Alumni

    My health seems to worsen all the time too. Makes me wish I had gotten hit by a tree in last night's storm. But no such luck.
    alesia quigley likes this.
  10. betteroffunknown

    betteroffunknown Well-Known Member

    I'm sorry to hear you're having such a difficult time with health issues, too, hon. For what it's worth, I'm thankful you didn't get hit by a tree!!!
  11. SillyOldBear

    SillyOldBear Teddy Bear Fanatic Staff Alumni

    TY Betteroff. I will pray for better things for both of us.
    betteroffunknown likes this.