(no subject)
Aug. 29th, 2017 08:33 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
the_rckI took a cab to UHS yesterday because it was raining. I took the bus home even though it was still raining (and raining harder). Part of that was that I wanted to get in a bit of a walk, even if it did mean getting wet.
Ingress is challenging right now because I no longer have the mid-range resonators that are hardest to get (at least for me). I can get lvl 1 and lvl 2, but 3-6 are harder.
My doctor told me that the tender points are no longer considered diagnostic for fibromyalgia so that me no longer having them doesn't mean I don't still meet the criteria for the diagnosis. She wants me to talk to my psychiatrist about tricyclics and SNRIs as things that might help me sleep. I pointed out that taking a tricyclic is decidedly not consistent with her goal of having me lose weight (I just don't want to keep gaining because it's a symptom of me eating badly) and that Effexor, an SNRI almost killed me.
I'd like to have something that I could take at night to sleep during the short window I have and something I could take mid-morning or mid-afternoon that would let me sleep for an hour or three to get to what my body actually needs, sleep-wise. I want some way to be awake and alert at other times.
There are two bits of foundation for my health that we need to stabilize before we can address anything else. The first is sleep (and the c-PAP is only a small part of that). The second is Cordelia's needs. Those two combined are leaving me constantly exhausted and with pain levels higher than I've had on an ongoing basis since I stopped working seventeen years ago. There have been temporary things that went higher but nothing that's gone on like this. No, wait, my hands while I was taking the Tamoxifen were worse than this, and that lasted about five months. But I guess I'm seeing that as part of this because these problems go back to around when Cordelia first dislocated her knee.
I think my doctor finally heard me when I talked about eating in order to keep my brain working. She asked me some questions about it. Possibly the fact that she was looking at the fibromyalgia side helped.
She does want me to try low FODMAP but accepted that it's not feasible right now. I don't have weeks to be utterly unable to function. She said two weeks, but that doesn't fit with anything I've heard from people who've tried it, so I expect a longer period of being mentally completely unable to function enough even to watch TV.
I'm also really not convinced that it's going to be ultimately useful. The IBS seems to be about 90% linked to anxiety, particularly long term anxiety. I think that trying to deal with the anxiety is likely to be more useful than cutting any particular type of food. I'm also concerned-- I don't know that there's much on the low FODMAP diet that I can manage from the side of food preparation effort or expense.
Also, I consider the brain fog an immensely more important problem to address than the IBS. The brain fog has a much bigger impact on my quality of life and ability to function.
Due to fatigue and such, I can't eat anything that requires more than a few minutes of work. I can't chop things. I can't use any appliances that don't live on the counter (so I can use the microwave, the toaster oven, the pressure cooker, the electric can opener, and the stand mixer). Anything else requires another person to help me.
(A side note before anyone suggests them-- Smoothies are not low effort. They're horribly heavy on effort. Anything that requires a blender is too much for me.)
I've now experimented-- The headache that I wake with most mornings needs sugar to go away, not caffeine. The required amount can be gotten from a small hard candy. So maybe, instead of tea/coffee, I just need a partial spoonful of honey?
My doctor suggested that we experiment with me taking the levothyroxine at bedtime, with my other bedtime medications. We'll check after six weeks of that to see if it changes my TSH levels and then adjust the dosage if necessary. I think that she's figuring that I'm at a low enough dose that, if we need to raise it, it won't be a big deal.
Right now, I'm getting ready to head out for another appointment and wishing that I had something on hand that would actually wake me up. I have some breakfast sausages I could cook, but I'm not sure I have spoons for that and the appointment and getting the trash out. The last two items can't be moved to a different day. I have canned tuna but nothing to mix with it. There's a can of French onion soup. I might be able to manage heating that. I know we've got shredded cheese.
Hopefully, I'll be able to write after I get home this afternoon.
Ingress is challenging right now because I no longer have the mid-range resonators that are hardest to get (at least for me). I can get lvl 1 and lvl 2, but 3-6 are harder.
My doctor told me that the tender points are no longer considered diagnostic for fibromyalgia so that me no longer having them doesn't mean I don't still meet the criteria for the diagnosis. She wants me to talk to my psychiatrist about tricyclics and SNRIs as things that might help me sleep. I pointed out that taking a tricyclic is decidedly not consistent with her goal of having me lose weight (I just don't want to keep gaining because it's a symptom of me eating badly) and that Effexor, an SNRI almost killed me.
I'd like to have something that I could take at night to sleep during the short window I have and something I could take mid-morning or mid-afternoon that would let me sleep for an hour or three to get to what my body actually needs, sleep-wise. I want some way to be awake and alert at other times.
There are two bits of foundation for my health that we need to stabilize before we can address anything else. The first is sleep (and the c-PAP is only a small part of that). The second is Cordelia's needs. Those two combined are leaving me constantly exhausted and with pain levels higher than I've had on an ongoing basis since I stopped working seventeen years ago. There have been temporary things that went higher but nothing that's gone on like this. No, wait, my hands while I was taking the Tamoxifen were worse than this, and that lasted about five months. But I guess I'm seeing that as part of this because these problems go back to around when Cordelia first dislocated her knee.
I think my doctor finally heard me when I talked about eating in order to keep my brain working. She asked me some questions about it. Possibly the fact that she was looking at the fibromyalgia side helped.
She does want me to try low FODMAP but accepted that it's not feasible right now. I don't have weeks to be utterly unable to function. She said two weeks, but that doesn't fit with anything I've heard from people who've tried it, so I expect a longer period of being mentally completely unable to function enough even to watch TV.
I'm also really not convinced that it's going to be ultimately useful. The IBS seems to be about 90% linked to anxiety, particularly long term anxiety. I think that trying to deal with the anxiety is likely to be more useful than cutting any particular type of food. I'm also concerned-- I don't know that there's much on the low FODMAP diet that I can manage from the side of food preparation effort or expense.
Also, I consider the brain fog an immensely more important problem to address than the IBS. The brain fog has a much bigger impact on my quality of life and ability to function.
Due to fatigue and such, I can't eat anything that requires more than a few minutes of work. I can't chop things. I can't use any appliances that don't live on the counter (so I can use the microwave, the toaster oven, the pressure cooker, the electric can opener, and the stand mixer). Anything else requires another person to help me.
(A side note before anyone suggests them-- Smoothies are not low effort. They're horribly heavy on effort. Anything that requires a blender is too much for me.)
I've now experimented-- The headache that I wake with most mornings needs sugar to go away, not caffeine. The required amount can be gotten from a small hard candy. So maybe, instead of tea/coffee, I just need a partial spoonful of honey?
My doctor suggested that we experiment with me taking the levothyroxine at bedtime, with my other bedtime medications. We'll check after six weeks of that to see if it changes my TSH levels and then adjust the dosage if necessary. I think that she's figuring that I'm at a low enough dose that, if we need to raise it, it won't be a big deal.
Right now, I'm getting ready to head out for another appointment and wishing that I had something on hand that would actually wake me up. I have some breakfast sausages I could cook, but I'm not sure I have spoons for that and the appointment and getting the trash out. The last two items can't be moved to a different day. I have canned tuna but nothing to mix with it. There's a can of French onion soup. I might be able to manage heating that. I know we've got shredded cheese.
Hopefully, I'll be able to write after I get home this afternoon.
no subject
Date: 2017-08-29 12:44 pm (UTC)I'm not sure why, but I'm reminded of my oldest sister's thing where she has to have a glass of milk at least every couple days in order to avoid a massive headache.
no subject
Date: 2017-08-29 05:03 pm (UTC)I think that doctors have been taught to assume that human bodies should all work exactly the same way. Somehow, engineering became a template even though the human mind/body system is much more complicated than that. Possibly the dynamics of solar systems might be a better analogy.
no subject
Date: 2017-08-29 05:06 pm (UTC)(I mean I don't think you're wrong! BUT.)
I like the solar system analogy.
no subject
Date: 2017-08-29 05:45 pm (UTC)no subject
Date: 2017-08-29 05:55 pm (UTC)no subject
Date: 2017-08-29 02:46 pm (UTC)One note re your headache - white sugar (beet or cane) isn't a FODMAP problem, nor is maple syrup. Honey and agave are, though. (So is corn syrup, especially high fructose corn syrup - fructose in excess of sucrose is one of the problem areas.) You might not want to do a spoonful of honey.
But yeah, IBS also spikes with anxiety and stress, definitely. (Is it IBS-D? If so, have they considered or tried dicyclomine? I was mostly hoping for it to take out the -D, but it also reduced the overall discomfort.)
no subject
Date: 2017-08-29 04:51 pm (UTC)The problem is combining low FODMAP with low carb/low sugar. I can't use any artificial sweeteners except pure stevia, and that won't help the headache.
Combining those with a very tight budget and a lack of spoons for cooking...
Oh and reflux related limitations and what Cordelia will eat add to the fun.
no subject
Date: 2017-08-29 04:57 pm (UTC)I think I'm getting pushed on it because my doctor knows what to do. The high priority stuff is all things she can't do anything about but guess at what might work.
no subject
Date: 2017-08-29 06:54 pm (UTC)no subject
Date: 2017-08-29 03:44 pm (UTC)no subject
Date: 2017-08-29 09:54 pm (UTC)I'm sorry this is so complicated and hard.
no subject
Date: 2017-08-30 03:59 pm (UTC)