July 2, 2020

Life With Chronic Illnesses, an Update

So, I had a followup appointment with my new primary doctor today. It's been two weeks since my initial visit.

The visit went as well as any visit, but in my mind, highlighted why I don't like doctors and just give up with treatment. I just feel like I'm not being heard. Or I'm ignored. My anxiety keeps me from really advocating for myself, and if the doctor doesn't ask specific questions about what my illness is then I don't bring it up. Which is basically what happened this time.

She's really nice but was in and out in fifteen minutes. I did manage to bring up my breathing issues which have been bothering me more and more the last few days, and with COVID-19 out there, my anxiety is making it even worse. I guess that was a plus on my side. She listened to my lungs after that. They sounded fine and my O2 was at 98% so I'm getting plenty of oxygen (that was with two masks--mine and the one they gave me). But there's still this tightness in my chest and breathing feels really weird and forced.

The only thing I could think to describe it is asthma which my oldest son has. I've never had any asthma symptoms in the past. My allergies manifest in my sinuses mostly giving me stuffy noses and headaches. The breathing issues started when my blood pressure got really high so the ER doc said that was most likely the culprit.

Anyway, since my lungs and oxygen are fine, she prescribed an inhaler for the times it feels really bad (like now) and we both acknowledged that anxiety could be making it worse (and who isn't anxious right now with everything going on in the world). I could tell at this point, she was ready for the appointment to end (closing my chart and pushing her chair out) and all of the questions and problems I've been having just flew out of my head. I couldn't think of anything and didn't know how to bring any of it up.

She then asked if there was anything else bothering me while she was basically standing up to leave. I managed to bring up one of my newer symptoms that has been really bothering me--feeling extraordinarily sleepy after eating anything. Of course, as I described it, I just sounded crazy. She just nodded and said something about getting my blood pressure under control first and don't forget to make that appointment with behavioral health.

I felt like she was basically saying it was in my head and I needed a shrink to work on my anxiety. But the anxiety I was talking about was casing the sleepiness. I don't see how fatigue after eating would be psychosomatic. If I even thought that was a thing, I wouldn't have brought it up with her and saved it for the mental health evaluation. This seems like a physical health issue. But I was dismissed so quickly, I didn't bring up anything else.

Her parting worse were to use the inhaler if needed, double my blood pressure meds, and make that appointment with behavioral health. Come back to check my blood pressure if I want (I have a cuff at home) and make another appointment after you see the shrink if you need it.

That was it. By the time I got back in the car, I was just so defeated. This is why I broke down for hours after I found out my last doctor dropped me from her practice. Because I had spent years with her trying to figure out what was wrong and we had narrowed it down to the anemia and were ready to start treatment when life got in the way. I knew starting over with a new doctor would be like this--all of my symptoms are being dismissed as blood pressure related. My anemia wasn't even mentioned. In fact, she said my iron looked "fine" from the ER labwork but didn't elaborate and I don't have access to those records to compare to what I have. And apparently the old office still hasn't sent over my last lab results from last year.

It's looking like the anemia and other vitamin deficiencies will be ignored until my blood pressure is lower. Or maybe they really aren't an issue? I don't know because it wasn't brought up and I wasn't really given the option to talk about. I was only asked about new symptoms, not old problems.

I knew this would happen. I just want to give up again.

I was telling my husband about it and how apparently she thinks the fatigue is just from the high blood pressure and once it's low it'll go away. Except I've had this fatigue for years. It's only gotten worse with the blood pressure. And if my blood pressure comes down and she still ignores the fatigue as a symptom of something else the what? Or worse, what if there isn't anything causing the fatigue that I can fix? What if that's just what my life is going to be like from now on?

I cried all the way home and told my husband if that's the case, I don't want to live. Because what I'm doing now is not living. I can't live. I can't do anything. I'm so tired all of the time. He nods and pats my arm and makes sympathetic agreements, but I don't think he really understands how overwhelming this fatigue is physically, mentally and emotionally. The realization that I may never be able to take my grandson for walks or to the park to play (when this pandemic is over) or go for hikes in the woods or literally do any of the things I enjoy ever again is just... I can't. I'm crying again because I can't live like that. I can't.

He thinks I'm being dramatic when I talk like that, but I cannot imagine the next 30-40 years of my life just sitting in my chair, staring out at the blue sky and being unable to enjoy the nice weather. My kids are nearly all grown up. My youngest son turns 10 in a couple weeks. I feel like I've missed most of his life because of this exhaustion. We don't go anywhere or do anything because my husband won't do stuff with the kids if I don't go with and I can't go anywhere. The last few times we tried to go for walks in parks, I sat at a picnic table while they hiked because I didn't have the energy to do more than that. My grandson is going to grow up without ever doing anything with me. Hell, he barely even recognizes me and he lives in our house because I don't have the energy to spend time with him.

I just don't know what to do anymore. I'm so desperate. I've spent the last two years telling myself I just need to get to X point where I can get treatment for the anemia and it will get better and that was just blown to pieces. All I have to cling to now is the hope that doubling my blood pressure meds will bring my pressure down enough that I don't feel exhausted anymore even though the fatigue has been a problem for years. If that doesn't work...

I just don't know.

Written by justanotherjen

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elvena_art
Posted On Jul 03, 2020

Hey Jen, I'm glad to hear an update from you. It must've been a tough day for you. I'm just wondering, besides getting a medical treatment, are you having talk therapy or counselling session as well? More towards your mental health. I'm actually a counselor trainee, and I would recommend for you to try having a counselling session near you for it may help you in your mental health struggles.

justanotherjen
Posted On Jul 03, 2020

@elvena_art I'm in the process of finding a new doctor/therapist. I've run into the problem (which I talked about in one of my journal entries) that I need to call to make an appointment or set up a video appointment online, but I have a severe phone phobia thing. So nothing is getting done other than my anxiety raising. My husband said he'd call after I broke down yesterday, but he probably forgot.
I did therapy a long time ago and didn't really like it. It made me more miserable. It would bring up all these issues until I was in tears and feeling like crap which would last the entire week until the next appointment where I was made to feel even worse. Hated it. Once I was diagnosed with bipolar and my meds were changed, I didn't need the therapy anymore. I still went for a while, but I remember the therapist asking what I wanted to talk about that session, what was bothering me and I couldn't think of a single thing. All the things that had made me so upset in the past were just trivial annoyances that I easily dealt with since the meds finally stabilized my moods. So we agreed I didn't need to go to therapy anymore. That was years ago. I was going to start back up last year because my meds weren't working anymore and I needed a way to deal with the realization that I may never get back to feeling well again. Of course, after psyching myself up for an entire week, getting up early to drive 20 minutes to the appointment, I found out it was canceled but they never called to tell us. I haven't been back to that office since then because the NP that monitored my meds said there wasn't anything else I could try and had weaned me off of everything since it wasn't working. So, yeah, I've been off my meds for a while and finally trying to find a new doctor/therapist. The pandemic is making that harder since in-person visits are limited and video calls give me so much anxiety I have to get drunk to do them.
Hopefully soon, though, it'll be sorted out and I can get back on some meds (first priority) then set up some therapy to deal with the stress. My biggest problem has always been the cost. Even with insurance, it's $25 per visit. If the therapist wants me to come in once a week, that's $100/month. Plus visits with the shrink is another $25/month. We haven't always been able to afford that. My last provider scheduled me for every 12 weeks instead of monthly and didn't press therapy because he knew cost was an issue.

TL;DR: I'm working on it. Hopefully, some time this month I'll meet with the shrink about my meds then set up a therapy session which is giving me all sorts of anxiety.

elvena_art
Posted On Jul 04, 2020

@justanotherjen thank you for sharing your experiences. As you've said that past therapy isn't working for you and I can understand that. Besides what could be the therapist's competency or your own readiness, there are many factors that may affect your experience. And for you it is more risky now due to this pandemic and video calls give you anxiety. I do understand regarding the cost as well. All I can hope for is that you have a place, a person to talk to or a support group where you can be present and be heard without feeling judged, dismissed or ignored; where you can readily face your issues and find closure and peace within. If you do decide to try therapy again, I hope you will be able to experience the healing process that comes with it.

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