I saw my physician’s assistant to the dermatologist on Thursday. She is the one who diagnosed me with HS. I’ve been seeing her for years and we had discussed this HS diagnosis before, but she had been reluctant to make it. I think the main reason that she went ahead and slapped that diagnosis on me was because I have been on a pretty highish dose of doxycycline for inflammation and I still flared up, and so that she could get me Cosentyx, which is the biologic that I started Thursday evening.
The way she sees it is this–If I have to become immobile during one of these flare-ups, that is just not okay. I am a very large woman, but quite active in my own way. I like to cook and clean and polish. I like to do laundry and all of the household chores that one does. I like to get out and walk around shopping malls and hospitals and indoor spaces I’m weird that way I guess. I like to get in my 10k steps. I am pretty active, when I’m able to be. But between the HS and my chronic migraines, it’s been almost impossible to keep to the pulmonary rehab schedule of M W Fs, which has made me feel bad, made me feel like a loser, made me down on myself which is automatic but completely against my nature at the same time.
And I haven’t thought, not really, about how much my skin flare-ups actually interfere with my life. Sometimes I won’t go to my friend’s house to play cards because I have to go up and down stairs to go to the bathroom. Or, I’ll just sit downstairs and drink almost nothing the entire time so I can just stay put in my chair and not have to pee. Or I will start exercising in ernest, like the rehab program, but then have to stop because of a flare-up. I will have trouble sleeping (getting comfortable enough to sleep). I will have to take pain pills, etc. Simply put, HS disrupts my life, just as the migraines do. And the vulvodynia.
So my dermatologist used to work in a Skin Cancer Clinic, but she has moved to a practice run by women doctors, only. Owned by women run by women and I love it. Of course I suspected that this would mean that procedures would be offered, and I wasn’t sure how I felt about that, until she said “we have something that will lighten your dark spots” and I said “don’t I need a laser?” and she said “you can do the laser which costs a lot more or you can use the cream that we have here.”
As I wrote before, I have become interested in skin care again primarily because I have had plastic surgery–might as well call it what it is. I have had, which was considered medically necessary, plastic surgery–i.e. a brow lift. I’ve been so swollen since the surgery that I wondered if it was really going to make any difference on my right eye which was the droopiest one, but as of last week the swelling has cleared up and there is a dramatic difference in my brow, it is extraordinary to me.
So anyway I’m interested in skin care because, like, I’ve had plastic surgery and maybe skin care would help me feel a little bit better about myself and aging, not that I’m that worried about aging, but I guess I have the “why not?” attitude now that I’m going to be going to this practice that offers procedures and creams and lotions and potions.
All this to say that on Friday of this week I’m going to meet with one of the doctors and go over in detail what my skin care routine should be. And I am shocked, absolutely shocked, that I have never thought to get a consult like this before. I need to know what I’m doing before I spend tons of money on products like the Clinique that I spent 80 bucks on (a serum) which was way too expensive.. well actually, I don’t know…that’s why I’m going to get the skin care consultation. Then when I do spend money on skin care products, it will be money well spent. Or at least better spent.
Now that I’m almost healed up from the brow surgery, I’m ready to get back into the swimming pool. I always want to go swimming. Always always. But my size, and my health conditions, and my oh-what-a-bother-getting-to-the-pool-undressing-putting-on-swimsuit-showering-afterwards attitude and difficulties tend to hold me up. When I didn’t have these health issues, I had no trouble getting to the pool. Anyhow, I really want to get started again and I do not want to do classes.
There is always this push-me-pull-me thing about classes. I like them. I like to talk to the chicks and maybe even to show off a little and cut up and make everyone laugh. And I feel this almost obligation to attend them. However, they are on a schedule and I HATE schedules. Also, I love the quiet of just going for a swim. By myself. Just me and the water and my snorkel (can’t hear a thing).
Oh my goodness. I just realized. My life ground to a halt in 2019 when I developed chronic migraines. And in the midst of all of that there was Covid. What a nightmare. In 2023 I got a lot of my mojo back– I felt much more capable physically than I had in years, but it’s been this thing and then that thing. Spinal stenosis, for which I take medication and get pain epidurals–this also can disrupt my life. Migraines, for which I take quite a few medications, plus Botox. Arthritis. IBS. Bipolar. Bipolar Bipolar. And almost everywhere I go I’m wearing a hat. And sometimes dark glasses. Because, migraine.
Oh my goodness. I would really really like to be healthier.
I told my GP after my physical, that I would work on things for six months and we would recheck everything. If at that time my cholesterol hasn’t come down, then I will start a freaking statin. Which is all I need, another medication. I am already embarrassed every time I go to a new doctor and they have to enter in all my pills and creams and ointments and potions. Rx. Rx. Rx. Rx. Rx. Just call me Rx.
I know from experience that the way to lower my cholesterol is to get moving and keep moving. I also know from watching some informative stuff this weekend that in order to lose weight in a meaningful way I need to build muscle mass. I hadn’t thought about it that way before, but certainly looking at numbers on a scale makes me nuts, causes me all kinds of difficulty with my eating disorder, so concentrating on building muscle mass…it just sounds better overall. I’ll take it.
Meanwhile I am in love with ramen noodle salad– I made one yesterday with broccoli slaw, bell peppers, green onions, celery, golden raisins, almonds, hemp seeds, sunflower seeds, sesame seeds, olive oil and rice vinegar and white sugar and Dijon mustard and salt and pepper and oh my God it is just the best thing ever.
And I’m wondering what it is I want to eat right now so I’m going to be thinking about that tomorrow, what to cook for the week. I’m thinking I’m going to try to do a congee with red lentils and rice.
That’s enough for now. I wrote such a wonderful poem this morning that I felt as though I could take flight off of a cliff and float forever and ever and ever. I could not stop weeping it was so beautiful.
That’s why, on the whole on any given day it is really good to be me, in spite of my limitations my skin my head my brain all of it.
My body still works and I lift up. My brain still works and I lift it up. I still remember things. I still recognize the people I love. My heart still opens to love. My mouth opens for apples and oranges and lettuces. My legs are still willing to climb up the stairs. My ears open to the music of violins and pianos and dishwashers. They still thrill to the music of words. My heart rises up to meet life as it rolls over the ridge every morning.
I am alive and I know that I’m alive and though this burden of consciousness is the root of all of our problems, I’m certainly not ready to let it go.
I have stopped the Trazodone. Don’t even need it. Believing I couldn’t sleep without it is just another story that my brain’s been telling me all these years.
And there’s this–
EVERYTHING LASTS, BUT NOTHING REMAINS THE SAME.
Bless me, Father, now, and at the hour of my death.
~r.
(Also, this is a occipital neuralgia day. So I am medicated heavily. And probably an ocular migraine day–this is a new thing. I am seeing strobing lights–my optometrist thinks that’s what’s going on–ocular migraine. In any case, it cases nausea just like regular migraines. However, she told me to let her know if it didn’t go away. It has not.)
