Fear Management

Sculptor44 · 01-16-2022, 07:03 PM

With some symptoms worse and more isolated due to Winter I am struggling with handling my life when my pain is up and breathing worse. I have pain that is new. It feels like it could be Long Covid as it is so different. And mainly it is when pressured like the ER doc who tried to grab my shin to test for edema and I barely made it to stop him. Shin pain I have had since before Covid. I am trying to come to terms with end of life things. If I don’t get a decent pulmonologist it will be sooner than later. My case is particularly complex and with pulmonologists yet immersed so in Covid there is even less help for my case. The pulmo at Mayo I saw left and they won’t assign me someone else without a doctors referral which was a real blow and proof of how badly records are working for me. Years ago I had a Tensilon test that was positive and I was so releaved and excited. There was huge beautiful Tree full of golden leaves out my 2nd story window I could see crystal clear for the first time. This test is forgotten and ignored consistantly. I am fairly broken hearted and sad today. Sculptor44

Lara · 01-17-2022, 12:33 AM

I hear you and share some of the thoughts you've shared.

You're obviously a fighter, so keep on fighting.

If your new pain is neuropathy pain, then take B12 methylcobalamin if you can. Try some magnesium spray if you can use that. It's handy in the spray form because it wouldn't take as much energy/effort to apply.

I don't know if you are able to take pain killers when it gets too bad.
Quality of life is far more important right now.
You may not be able to take certain painkillers because of your breathing issues, I don't know. Please ask about that.
No one should be in pain when it's unbearable.
It's heartbreaking frankly.

Keep warm.

Atticus · 01-17-2022, 02:16 AM

There was huge beautiful Tree full of golden leaves out my 2nd story window I could see crystal clear for the first time.

That is so beautifully poignant.

Thanks very much for posting. I do hope you can find relief from all that pain.

Atty

Sculptor44 · 01-20-2022, 08:08 PM

I pulmonology nurse Ann called back . Called my daughter which may be intentional. She did do a good job . Also. Neurology trying to get me in. My neurologist called me yesterday. It was unexpected. It was a brief call. She is poor communication doc but keeps me in Mestinon. Sculptor 44

Sculptor44 · 02-04-2022, 06:00 PM

Wanted to talk about my Pain. Steroid shots and Getting enough Sun to keep my vitamin D up are 2 things that have biggest impact. My tanning for Sun has been down because of continued struggle with homecare. I have anew young lady who gives me an hour 2x a week. She takes me to tan. When I can again sit outside and get more pain will do better. Bless that great Rheumatologist Regier who tested my vitamin D in 2006 And the Endocrinologist who gets Vitamin D issues!! The occipital nerve in my face is so under estimated as a huge problem and. Began at my left eye. Now it can be most of my face and base skull. Some of best doc I have met was in the path of my pain answers. I got my Hydrocodone one day early this week and not cause I asked for it. My mom took a pill that fooled her body into not noticing how hard it was to breathe. It is an opioid. I read apiece on Compassionate Sedation. With the compassion seemingly beat out of parts of the medical system I really am concerned about my end of life in Iowa. Sculptor 44

Sculptor44 · 02-16-2022, 10:31 PM

So I was given my ER Solumedrol differently and boy did it affect my Brain. Mainly my feelings. Such bad timing as I am going thru more than usual. Treatment was in 3 shots of 40 units. Doc tried to get away with lower dose. When last shot was done later nurse came in and put it in upper arm. I didn’t have chance to say in my bottom only. This too close to my head has happened before. So the pst I wrote about how afraid I was was a big part steroid reaction. My chest is worse. Chest and throat making it much harder on me to Talk. The steroids have me walking very well today tho. I had the fortune of a very very nice nurse do the Post ER check-in. I needed that deep kindness from her. Sculptor 44

Sculptor44 · 11-25-2022, 10:12 PM

I am back at this post because my symptoms are worse, my body has been in decline stronger since I moved into Assisted Living. I honestly am darn good at finding help coping. But having absolutely no control over the medical system that has decided I don’t get to be helped has me in my little apartment with my health failing faster. The first hours in the morning are the worse for being so so scared I find my body locked in tension even now I find my fists clenched at my sides trying to bear what’s going on in my chest, my breathing. Sitting in my chair I barely made it to counting off 30 minutes of my Mestinon kicking in and hoping for some relief. And then another 30 minutes so I can walk more safety. My daughter is trying to hire a person to take me to the doctor. Appointments. My daughter had to talk to the nurse here about a care document they produced that seriously misrepresents my status. She asked for a copy of that as we are asking for a correction. Sculptor 44

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