Just a reminder to all of you.
Read stories of others here:
Just a reminder to all of you.
Read stories of others here:
There are moments when all the doctor’s appointments and all the tests and all the scans are just overwhelming. I want a D&D cleric who could heal me with a prayer. Or a potion.
My veins are rebelling from all the sticks. It takes a skilled phlebotomist to get it right with one poke. Otherwise, they have to chase my rolling veins or poke elsewhere. Right now, I have a very slight bruise from the IV I had to get for a CT scan of my neck. I don’t think I will ever get used to the feel of the contrast through my body.
I have two new specialists to go see. I’m sure they will each want some blood work done. ~sigh~
I’m getting a biopsy of a node on my thyroid next Tuesday. The day before we leave for Worldcon 76 in San Jose. I’m very excited about the convention. Looking forward to seeing old friends and maybe making new friends. Totally not looking forward to the biopsy.
I hope with each exam and blood work and scan that there will be answers. It feels like my life is just an endless stream of medical stuff.
I’m just so tired.
I’ve had a slew of follow-up and new consult appointments in the last month. I mentioned a few in my last post but let me go more in depth.
I finally saw a neurosurgeon about my back. It was to find out if my issues required surgery. They do not at this time. He also made many, many passive comments about my weight. Super irritating. Saw a rheumatologist about my arthritis or whatever the heck is going on. I have some vague immune disease (listed on my health summary as: nonspecific immunological findings). There’s a test called Thyroid Peroxidase Antibody study which showed that yep, my immune system was indeed attacking my thyroid. Good job, immune system! I was given a NSAID that was very mild in consideration of my CKD. It was working with helping keep the pain to a dull roar. At my follow-up with the nephrologist, however, he firmly told me NO NSAIDs. None. Nada. I’m borderline Stage 2/3 and he apparently wants me to stay more on the 2 side. Anyhow, I let the rheumatologist know and now we are trying another drug that doesn’t reach peak effectiveness for like six months. Oh, otherwise, my kidney disease is stable and I follow-up in November. I follow-up with the rheumatologist in September.
So, the neurosurgeon and the rheumatologist suggested physical therapy and maybe pain management. I’m leery of the pain management given all the stupidity around the opioid crisis. So I got a referral for PT. Which I started on Wed. It’ll be three times a week for six weeks. I’ve had two sessions. The team is great and encouraging. I have a variety of exercises to strengthen my back and core muscles. Plus some stretches to loosen the super tight muscles I have in my lower back and glutes.
I’m following up with my primary care doc on Monday. I’ll ask her to refer me for carpal tunnel since that’s started flaring up again. Super painfully. Both hands. Yay me.
The other specialist I went to see was an ENT about my weird voice issues. My left vocal cord is paralyzed. But with speech therapy, I should be able to have a normal sounding voice one day. Meanwhile, he wants to do a CT scan to make sure there aren’t any other processes going on. And he’s wondering about a connection with my immune issues. Follow-up with him in a few months.
Good times. I tell ya.
Mental healthwise. It’s been dark, black, darkness. I’m super down about my finances, about my relationship (the live-in one, the other one I’m only sad because we can’t visit as often as I’d like). Working on it. I still have weekly therapy sessions. I’m trying to come to a clear understanding of what would make me happy. Then we can figure out the steps to get there. I’m entirely dependent on my partner for shelter, food, transportation and clothing. So, I need to figure out how to remove that dependence and then look at the relationship.
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I’m really struggling with my depression. I am in therapy every week so I have that on my side. The unpacking is going very slowly. The Etsy store is okay. I need to put more into marketing and into getting quality components to make saleable goods. I’m hoping to get an influx soon. It’s really disheartening to see all the page hits but no sales. I know the items up there appeal to folks because I’ve gotten feedback. I don’t think the prices are unreasonable either. The last show we did was a bust. Didn’t quite make back our expenses. But many valuable lessons were learned and there’s another convention coming up over Labor Day weekend. Hoping that one will be a success.
I have several follow-up appointments coming up. My pain levels have been awful. I am on a new med prescribed my the rheumatologist for pain. It helps but with the moving and now the unpacking, some days I can barely get out of bed without crying.
I’m very weepy and spending a lot of time navel-gazing. I have an app to chronicle my mood each day. Most of mine have been “meh”. Just feel stuck, I think. My therapist wants me to sit down and write down a list of my need and wants. Then I guess in our next session, we’ll figure out a strategy for getting my needs met.
My relationships are unsatisfying. I think it’s because I need more in person time with the partner who lives in Tucson and more quality time with the partner I live with.
Not having things unpacked and semi-orderly is causing me great anxiety. I like having stuff put in some kind of order. I love shelves and boxes and cabinets. I want everything in its place. I’m working on it as I have the energy and when I can manage my pain.
I’m trying to remember to use my coping tools: music therapy, journaling, making pretties. I’ve not yet successfully reincorporated exercise/movement yet. I am a work in progress.
Worried about my kitties. They seem okay but I’d feel better if I could get them a wellness check.
I need to write down all the things I want to bring up with my doctor (who I see at the end of the month). Stuff keeps coming up. I also have two more specialists to see in the near future as well as follow ups with ones I’ve already seen.
Feels like too much sometimes. Plus all the things my partner expects me to track and take care of. I mean, I know I have broad shoulders but dang.
Looking forward to vacation next month.
My nesting partner and I moved last week. Everything about it was incredibly stressful. My voice finally came back, though. I will still see the ENT about it just to make sure nothing is seriously wrong.
This new house just *feels* right. It has problems as you’d expect for a house built in 1975 but we can adapt. We will need a stand alone island in the kitchen to provide more work area as well as storage. The den is now the bird room. I’m still trying to figure out my office/craft space.
So much unpacking needs doing. We may have too much stuff. I’ll be listing some of it on freecycle or somewhere. I’d like to ditch the old treadmill and get something that we can fold up when not in use. We have the usual excess of computer cables, hubs and the like that any pair of computer geeks accumulate over time. Plus the stuff I got to accommodate for lacks in the San Jose house and the Scottsdale house that don’t exist here.
I’ve had several of my medical appointments rescheduled due to issues at the doctor’s office. ~sigh~ But I am finally seeing the neurosurgeon about my back tomorrow! Next week is the rheumatologist. My follow-up with the nephrologist got moved to July. My follow-up with the hematologist is in Sep. Plus I’ll be due for my annual visit with the podiatrist (new orthotics will be needed, they cost $200 last year for three pair, hopefully the price hasn’t gone up and more importantly, I hope my bunion isn’t worse).
I have a show coming up this month. Really hoping to sell out of stock. Got turned down for one in Nov and waiting to hear about one in August. I have gotten a number of sales at my Etsy shop though.
I’m still running my fundraiser to help me until I can stand on my own. I have dental work coming up plus I know the orthotics will cost me something out-of-pocket ($200 last year). I’m not sure what treatment options I’ll have for my back. Guess I’ll know something more after tomorrow’s appointment. If you want to help me with these out-of-pocket medical costs, PayPal or GoFundMe or buy something awesome from Dragon & Wolf Crafts
A reminder since suicide is back in the news. #nostigma
Finally made it to a therapy appointment this month. Had to reschedule twice and was determined to go this time. I still have little voice but we made it work. It was so good to talk and get feedback. I really feel like this therapist helps and will continue to help me sort out my stuff.
Today we talked about my panic attacks and anxiety. My realization that they started happening not too long after my rape at 9 years old. I didn’t realize those episodes were panic attacks until very recently when I learned exactly what panic attacks are. From https://adaa.org/understanding-anxiety/panic-disorder-agoraphobia/symptoms#
A panic attack is the abrupt onset of intense fear or discomfort that reaches a peak within minutes and includes at least four of the following symptoms:
Palpitations, pounding heart, or accelerated heart rate
Trembling or shaking
Sensations of shortness of breath or smothering
Feelings of choking
Chest pain or discomfort
Nausea or abdominal distress
Feeling dizzy, unsteady, light-headed, or faint
Chills or heat sensations
Paresthesia (numbness or tingling sensations)
Derealization (feelings of unreality) or depersonalization (being detached from oneself) Listen to this podcast.
Fear of losing control or “going crazy”
Fear of dying
Of these, I most commonly got the sweating, derealization/depersonalization, light-headed/faintness, chills and pounding heart. And I still do. I look normal from the outside but inside I’m a mess. It has happened at school, at work, at parties, just sitting alone at home. It’s awful and exhausting.
My next step is to talk to my doc about getting an anti-anxiety medication. Being able to somewhat control my anxiety will help me cope better, I think, with life in general and maybe wrestle my demons more effectively.
I’ve added more stuff to my Etsy shop. Dragon & Wolf Crafts
Wil Wheaton wrote a wonderful piece. I’m sharing it with you. You are not alone. #curestigma #stigmafree
It’s that time again! May is Mental Health Month. This year NAMI.org is promoting the theme Cure Stigma and has a website where you can go, take a quiz and learn more. I think it is a great theme for the month! Mental Health America is going with a different approach with it’s Fitness4Mind4Body theme. I’m not as thrilled with this approach because as person with chronic physical illnesses, it seems to lack nuance. Heck, even for those without my physical challenges, exercise and going outside doesn’t always do a damn thing for their mental health. I understand the whole person approach but I would rather see more nuance around the idea. Like for some people, increased physical activity does improve their mental state but for others, it simply does nothing or it can be harmful. There are so many factors that I honestly think MHA is not promoting a good campaign this year and I will not be sharing anything further than the link above.
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