I've had enough.
I try so hard to see the good thihgs around me. Lately I am simply going through the motions.... barely. More tests, bloodwork and still noone to put the fucking puzzle pieces together. I look up results on my online website from the hospital. I find out more stuff and more things that can and are going wrong.
When I look at all the crap going wrong, I realize my life is all but over. I am never going to do so many things I still thought I may have had a chance to. There are still some I guess I could, but just don't have the energy or desire right now.
I think about the last time when I actually went (and waited) to the ER, one thing they asked was have I thought of hurting myself. I did tell them I would not do that but did admit I figure it really doesn;t matter one way or the other. Probably the only thing saving me from doing that is that I am such a procrastinator and still have niot made a will or prepaid my funeral. I do think I will work on that this week.
Also tomorrow am going again for another test and bloodwork that is time sensitive so I had to schedule. I will call AGAIN to try to get an appt scheduled with nephrology. I am just so tired ans just seem to be curling up in my apt withering away
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I am so sorry, dear Kim, VQ. Please know so many on here give support and love to you. What I have done in the past in my situation, which is to ask God and my guardian angels to direct me to the right medical provider. Then I leave it be. And I will get a voice like thing in my head, maybe an idea, or I decide I need to ask my PCP, who is the right provider who can put the pieces together. I want a problem solver. I once went to a medical psychic who blew my mind, this was maybe 3 years ago. But that was where I learned there was mold affecting me and I demanded my dear husband that we get mold remediation which was a huge endeavor. More mold than we realized. But now we both feel better. I saw the mold on the ceiling but we couldn't see behind all the walls. The flippers before us had roof leaks and lied and covered it up. My blind husband kind of refused to believe mold grows where we live. I was passive and overwhelmed by health issues.
Having so much health crap going on makes me kind of obsessed with having good health insurance (original medicare). I am a big OCD now over not getting screwed over medically. I know the feeling that where is the real help. I actually went to the pain doctor, spine doctor, at the end of December and said I have this injured hamstring and the pain is up in here and if you can't help me, can you refer me to a doctor that can? What do I do, what do you think this is? I was a little overwhelmed, well a lot overwhelmed. He is thoughtful and kind and said let's try a steroid, pain shot and see in two weeks. It helped and I am turning the corner on this injury, I hope I hope, I keep doing the PT and thinking optimistically where in November I had no optimism.
And being prepared with our estate planning will relieve your mind. I can't nag my husband enough to make him contact the attorney and finalize his estate. I am screwed if he doesn't because his son will take me to court, long story, but money means greed and the son has a greedy mind. Anyway, take care dearest one.
Sorry you’re struggling.
I don’t know if sharing this will help, at all. But years ago I had a serious life threatening health event. Recovered but it scared the hell out of me and the anxiety from that sent me in this tail spin because through all these tests I had done from that issue, other unrelated things were seemingly found, which lead to more tests and so on and so on It totally messed with my head, for like a good year or two It was frustrating and completely taking over my life. Then the stress from that also started to take a toll on an existing auto immune disease I have that had actually been in remission prior to the whole ordeal.
At the time I was talking to a good friend about it when I was kind of at my lowest and she just said to me, so are you just going to be a sick person from now on? It took me aback. At first I was defensive but what she was really saying was that I was starting to lose myself a bit in my stress, and health stuff, making everything about appointments and tests, thinking there must be something terribly wrong with me and acting as if I was destined to be a shell of a person. Her saying that to me, bluntly, really prompted me to rethink how I was approaching things. I actually then fired my primary care doctor who was a general practitioner and found an internist my GI doc recommended for my primary care and honestly it really helped me reset and got me off getting all wrapped up in the medical system hamster wheel. He had a completely different approach, he took me seriously but was not an alarmist and was super practical. I had options. He was also not just telling me what to do but partnering with me. So I felt very empowered.
All of this is to say maybe it would help to just take a beat, reevaluate if your care givers are the right fit, etc. When you have a few issues going on to me the most important thing is a holistic, coordinated care approach. Often a good primary care doctor can help navigate coordinating with specialist and what not.
Also maybe it helps to break things down a bit. I didn’t need to solve all the things at once is something I had to really remind myself and that medical stuff was sort of taking over my life when it really didn’t need to. I could still have a life but still manage my medical stuff but have it not be the only thing about me.
I also stopped reading test results on line before discussing with him. That way I wasn’t going down a rabbit hole of my own making.
So just offering that sometimes pausing and rethinking whether our doctors are making sense, if we have too many cooks in the kitchen, if we are under the impression everything is a huge issue or can it be prioritized.
It’s your health so I don’t know what the biggest hurdles or issues are for you but I do think there is something to taking a measured, balanced approach. For me it’s not always checking off a list all the things just because someone told me I gotta do XYZ. Doctor recommendations are just that: recommendations. They aren’t laws.
Get out of your apartment, find something you can do outside your health stuff. We need balance in our lives. You included.
hey I hope you know we all care about you kim.....and I have decided to donate my body to science which I had to lose weight to be able to do they would not take me if over 225lbs and now I am 217 lbs...I have been 285lbs before too...ozempic and synjardy I think helped me lose the weight...
Sending prayers your way to help you navigate this difficult & frustrating time with your health care. Hugs! Brooke & Henri
Thank you everybody. I do so appreciate all the hugs, prayers and support.
I must admit I have found myself checking my results online and going down the rabbit hole. I think part of this is because I am curious as hell and trying to figure this out. (OK, guess I should remember I am not Marcus Welby or Dr. Quinn)
I will say my rheumatologist is the one Dr who has been digging deeper to try to help me understand. He just came back from vacation today and it is his staff that has updated me all week so I have more faith in him. Unfortunately his tests have come up with the other things (alot of which have more to do with the autoimmune stuff. which is escalating because of all the damn stress. )
Anyhow, I am now taking that much needed breath and stepping back as I have done all that I can for now. I also have an appt with the eye dr in 2 weeks and thought about moving it uo as my vision is worse most of the time. I have readers but struggle to get the right strength . I really need glasses but am not sure if these changes are because of other conditions and may change or if the glaucoma I started with sometime back has progressed. (Last visit that was still under control_)
I do promise to tuck away all my big fears until I hear they are ruled out. .
glasses check is going to give you more information I hope they do the picture of inside of eyes if Lenscrafters....that lets them keep record of what is going on in eyes with regards to diabetes as well....I use lenscrafters and have an appointment after tax day....I think April 22nd is my appointment.....I have astigmatism which is a warp in the back of the retina.....so I have had glasses since maybe 2 or 3rd grade,,,,,,I tried gas permeable contacts but did not like them so turned them in within 2 weeks and got 1/2 money back.....
anyway glad to know you are getting eye exam....and do it every year from here on because the diabetes care requires them to look for blood vessels that are leaking.....good self care says yearly now not years apart...
I was avoiding drs and specialists for awhile. At least several years I would only see my gp. Until the last year I started having a racing heart. So now I’m seeing specialists again and it’s really scary for me because they are finding things. I had an echocardiogram a few weeks ago and the results were on my patient portal by that night!! I spent the night looking up cardiac vocabularies and learning what everything meant and terrified myself I saw I had a couple of thickened valves and several issues I still haven’t had my follow up with the cardiologist. Still waiting. But I’m telling myself it’s normal to have wear and tear on our bodies as we age. Kinda like an old car that we love and just take care of with love and affection. We try and give ourselves some TLC. And make the best with what we have. Trust me when I say I know this is so much easier said than done. I just woke up from a 2 hour nap with a racing heart and feeling so out of it. But each day is a new day Hugs. To you. Xx
Hugs my friend. You are strong and will find a way. We have only today, now. Tomorrow, who knows. But one thing, be gentle with yourself. That is why I do not make bucket list or plan too much. I just go with the flow. Wake up and away I go. Again, be gentle with number one and that is you.