I've had very bad allergies for months now and about a month or so ago I started to wonder if they had led to ear infections. My ears felt constant pressure, they are itchy deep inside, I often feel stabby pains in them, and my ears are producing a lot of a clear, sticky fluid. Once my right ear was itching and I rubbed it and a bunch of this fluid came out.
I went to the redi-clinic yesterday and indeed, I do have double ear infections, probably caused by the allergies. The NP said that both ears are very inflamed, but the right one is worse.
She was initially going to prescribe a systemic antibiotic. I asked her if she thought I could recover without it, and she said that yes, adults usually can. So instead of treating the bacterial infection directly we are treating the symptoms that led to it: I am using Flonase to clear my sinuses (because apparently my ears are full of fluid), and Allegra to calm my allergies, and I am going to take lots of zinc and D and selenium to try to strengthen my immune system.
I can already say that the FLonase is like magick. When I had a generic version of this a few years ago, for flu, it was almost totally ineffective. The brand is OTC now so that is what I bought, and it's amazing! I had a spray yesterday as soon as I bought it, then a spray before bed, and I could breathe all night without any sudafed (for months, if I didn't take sudafed, I smothered a night, but I don't like it because it makes me jittery). I had another spray this morning even though I didn't feel congested, I just want to keep on top of it. I can breathe! My ears hurt less! Hooray!
I really hope I can get better soon. No wonder I've been so exhausted.
So, this month marks one year since my Celiac dx, one year since I went completely, rigorously GF (and not just wheat-free, as I was before.)
As I have mentioned, the first, most drastic change I experienced was the end of FMS. One year later, I have seen even more improvement. For the first several months after going GF, my major aches from FMS were gone, but I would still have the sudden stabbing feelings and skin crawling feelings, and burning sensations. Those are gone now.
The only "FMS" symptom I have left is hypersensitivity, and that also happens to be a symptom of autism. Even it is much reduced, though.
What I have learned has led me to see FMS as a symptom, not a disease in itself.
Peripheral neuropathy is also gone. I haven't gone back to the neuro to get tested again, but I just don't have the problems I had before. No more numb feet, no more loss of foot control. And that happened relatively quickly.
What's amazing is that one year later I see even more improvement. Like, some things improved fast, some things take longer.
One thing I have noticed recently is that my immune system is calmer. Before going GF, my immune system had become very reactive. I had rashes almost every day. I had lots of skin irritation. My pso/dermatitis was very difficult to deal with, and it had been getting worse for years; at this time I have been free of flare-ups for months (I had a little flare about 3 months ago). These days I still get a small amount of irritation on my chest sometimes, but I am no longer covered in rashes. For several years I'd been getting rashes on my wrists, and those are gone. I'd always been "allergic" to my carpal tunnel braces; if they touched my skin, I got a rash on my hands and wrists. Now I can wear them without a rash.
I am the most even-tempered I've ever been. This may have to do with controlling my BG, too, but even aside from that, I feel different. I just feel so much less quick to anger than I have ever been. Most things, I feel now, just aren't worth getting upset over.
My digestion and related organs keep getting better. Late last summer I tested positive for ulcerative colitis, and although I haven't gone further with that (I haven't had a colonoscopy or gone to see a GI doc) I've noticed that my symptoms are less severe. I was tested because I was experiencing constant bloating, whenever I ate anything my abdomen would swell up. Now my abdomen is visibly smaller and softer. I do occasionally get bloat and etc, but for awhile last year it was every day. After I went totally GF, it actually got worse for awhile, but it has been getting better and better. (people with Celiac have IBD ten times the rate of people without Celiac disease, and anti-TTG antibodies are implicated in IBD. This SHOULD be more proof that Celiac does not only attack the small intestine, but doctors are not scientists.)
My dysautonomia is also improved. Now, when I am super-tired or sleep-deprived I will get episodes of dysautonomia, but otherwise I am mostly good! I am also much better at tolerating cold.
Unfortunately, I still have CFIDS. It isn't gone. I am intensely fatigued. But I am hoping that my improvement continues and that maybe someday I won't have CFIDS anymore.
Cats: although the situation with CC had improved somewhat over the months, Opal and Serena went pee-crazy a few weeks ago and basically pissed everywhere. Over the course of a week, there was cat pee:
on the sofa on my bed (on my side of the bed, btw, a clear message) in a box oc B's clothes in the bedroom on the bedroom floor in a basket of clean laundry in the bedroom in a bowl/on the floor in the studio and even ON THE DINING ROOM TABLE
Add to this the fact that Opal had over the month bitten me on the hands, hard enough to break skin, three times. That's just not normal Opal. CC had to go.
In the meantime we got a Feliway diffuser to try to calm things down. It seemed to make Opal and Serena sleepy, and it actually made CC MORE bold toward them. CC was no longer playing; during her last few days here, she was clearly and deliberately trying to intimidate Opal and Serena. Even before that, though, she intimidated them both with her size and behavior.
I had been under the impression that R was communicating with CAP to take her into their program. I myself had already messaged several rescues. It turns out he HADN'T been in communication with CAP. HOPE and FFL had both turned CC down after saying they would take her into their program. So in desperation I turned to Merlin's Hope, a rescue in North Texas who helped us when my youngest sister abandoned a cat here a few years ago.
It was quite a long tale, but Merlin's Hope took her in. They may already have an adopter lined up. I took her to the vet last week to get her shots updated; it turns out she weighed 9.8 pounds. Compare that to Opal at 7.5 pounds. No wonder my tiny cat was intimidated!
R took CC up to the rescue on Saturday and O & S are much happier and more relaxed already. They've been playing together and happy. We were concerned that Nugget would be upset, but she isn't acting upset at all.
The rescue says that CC will be going to her new home on Friday! That's great situation.
Opal also had an updated lung x-ray last month and it shows no change in the mass in her lung. Hooray! Her allergies have been a bit extreme this spring but otherwise she seems healthy. We really need to improve the air quality in this house, though.
Speaking of the house, it has reached the point where it needs a LOT of work. All the gradual home improvements that didn't get done over the last 4 years HAVE to be done this year. I've got my work cut out for me, I suppose.
B is in AZ right now for work. He's been gone almost two weeks and won't be back for at least two weeks more. This is hard. We've been apart like this before, of course, but life is a lot more stressful for me right now and my state is more fragile than it was then.
Health: my health continues to improve. This winter though my plantar fasciitis got way overboard, it was cripping, so went in and got a shot for it. This is the first heel shot since 2007, which is actually a great record! I hope that the shot, combined with Meloxicam and exercises, will keep it at bay for a good long time.
In other news, I am really into crochet these days. It feels very healing and that's about all I want to say about that part. But it quiets my mind, it gives me a chance to be still and listen to music or a podcast (I've finally gotten into WTNV and I love it). I find it very de-stressing, and it turns out that scienc agrees with me. I want to crochet all the things. I am really pleased to have a craft that I can carry with me to social occasions, and I'm actually pretty good at it, which doesn't hurt.
I've been spending about a weekend a month out at my stepmom's house in the burbs. We also went out to the lake one weekend, though it was cold so not as fun as usual. It's great to have such time with her and the kids and my sister JAL. A few weeks ago, my niece was on spring break, so I went over during the week and spent three days. It was really nice. My niece CL2 was actually dreading spring break, because, as she said "Last year my mom . . . Monday and Tuesday were bad days." Isn't that heartbreaking? I am glad that this year, she had a good spring break.
This is a comment left at Captain Awkward by commenter espritdecorps. I found it very very accurate and poignant and it reminded me of my younger self and I was both amused and embarrassed a little.
"Younger people have fewer identities so they tend to put greater passion into them. A 23 yo Poly, Feminist, Business major can be forgiven for evangelizing. The 43 yo project administrator who is a mother of three children with her two long-term partners, in the middle of converting their garage into an in-home daycare for the partner who cares for their special-needs toddler, and volunteering twice a month with a non-profit org that helps entrepreneurial women create business plans and secure funding isn’t as invested in converting people.
The change in focus from talking about one’s ideals to living them, is sometimes mistaken for abandoning the cause, or getting ‘old and boring’, when it’s really integrating all your identities in a cohesive self."
CC will bring a toy to us when she wants to play. Usually she brings the ribbon toy or the feather toy. Well, Opal has learned by observing CC and now she does it too! This is the second time she has brought me the ribbon toy because she wanted to play. She just dragged it into the living room making her "play sound" (which is an extended meow that sounds a lot like a tomcat's call, she only makes that sound when she plays with toys) and dropped it on the floor in the middle of the rug, in front of me.
Several years ago she also learned from Serena about toy mouses. I bought a pack of toy mouses and gave one to each cat. Opal was not interested, but Serena was in love: she carried the mouse around with her everywhere and played with it often. For a week or so Opal just watched Serena in puzzlement, and then she started to play with the mice too.
I don't really feel motivated to do much of anything lately, but I know I need to eat or I will feel even MORE miserable. I am minimally functional, I guess. I spend most of my days in pajamas, distracting myself from my actual feelings and existence as much as possible.
I am just going through the motions of life, I guess. I try to make other people happy. I miss feeling connected with other humans, but in a helpless, hopeless way.
I have had nothing but nightmares or sad dreams for five months.
On top of everything else, I said goodbye recently to a friendship that I really, deeply valued; a friend I loved very much. It was really over quite awhile ago, I just didn't know it, or didn't want to acknowledge it. I think that on one level I knew, but on another I was hoped I was wrong and hung around hoping that would be the case.
Eventually it became clear that my friend didn't really consider us friends anymore. It appears that they were just waiting on *me* to get the message and go away (said friend being a hater of any confrontation.) Finally, I did. I am slow to take hints, in fact I'm not good at hints at all! I wish people were direct. I think I would rather someone just told me that they didn't want to be my friend anymore, than prevaricate; the former hurts but is honest, but the latter messes with my feelings and compounds the hurt by dragging it out.
I guess in retrospect it makes sense that this person would choose to end our friendship. They are a person very strongly influenced by the opinions and desires of their partner, and their current partner dislikes me very much (to the point of violence). To a normal, hint-taking sort of person, it was probably obvious they would drop me, right? But I really never saw it coming. It never occurred to me that my friend would be so, well, banal.
What's weird about this whole thing is that upon understanding the real situation, I didn't have the depth of care or hurt that I had expected. It somehow cannot touch me. Next to CL's death it's just so trivial. It's like throwing a tiny twig on top of an enormous bonfire. I cannot possibly be more destroyed. More than anything else, I am just disappointed in my friend. I thought they were a better person.
I am dealing with a lot of anger lately, and its contributing to my stress and depression.
Finding out that eating gluten was the problem was actually a relief, because it meant there was something concrete I could do to improve my health. So I am not actually angry about having Celiac disease. I am also not angry about not being able to eat gluten. That's actually not a big deal to me. It is very inconvenient, and sometimes I feel frustrated or wistful or annoyed, but I'm not angry about eating GF. Eating GF helps me a lot, so I am actually happy about it.
What I am angry about is the way that so many doctors failed me. I am angry that I was misdiagnosed over and over and over. I am angry that none of the many, many specialists I saw nver looked deeper to find out the cause of my many disease states.
For example, the neurologist who diagnosed my peripheral neuropathy: he didn't try to find out WHY I have it, or suggest another doctor to find out why. He just said "We don't really know wny non-diabetics get it. A lot of people with hypothyroid disease have it, and with some people it's just genetic." Did he happen to mention Celiac disease and its frequent comorbidity with hypothyroid? No. Same with my recent endo/GYN: I asked him directly if he knew anything about gluten consumption increasing anti-thyroid antibodies, and he dismissed the idea, saying it was just hype and that people with thyroid disease were mistaking IR for a gluten problem. But there is documented research showing that a)people with AI thyroid disease should be tested for Celiac disease and b) Celiac disease, when combined with AI thyroid disease, raises anti-thyroid antibodies.
I am angry because I could have been well a decade ago if someone had really looked into the autoimmunity thing. I am angry because I have suffered so very much, and my health is not and might never be 100%. I am angry because my body is damaged and I have not been able to have a full life. I am angry angry angry.
I saw so many specialists who were dismissive and rude and fat-shamey and disrespectful and didn't help me at all. And their misdiagnoses, in addition to destroying my health, cost me my disability case and furthered my years of poverty and struggle and sickness.
WHen I was very young, I was one of those people who was not entirely, but kind of of, opposed to conventional medicine. I was all into natural remedies and mental fortitude. But those things failed me, so I turned to conventional medicine. But conventional medicine, too, failed me. It did. So now where do I turn?
The problem, I am sad to say, is that most doctors are not practicing evidence-based medicine. They are practicing bias-based medicine.
I am considering going back to my old therapist but honestly even that feels overwhelming. Finding new doctors feels overwhelming. Doing all the bone scans and colonoscopy and other stuff I need to do is overwhelmnig. Getting out of bed in the morning is overwhelming.
People don't realize this, but living with chronic autoimmune disease is a full time job. Just taking care of myself right now is a full time job, one I have to do with only half the energy of an able-bodied person.
People with Celiac disease react to other proteins in wheat, not just gluten. This study confirmed it on the molecular antibody level. This confirms what I have been saying for awhile: current diagnostic criteria for Celiac disease are ineffective. It explains why many of us test negative for anti-gluten antibodies and even for anti-TTG antibodies.
It also explains why many people are told by doctors that they don't have Celiac or shouldn't bother to have an endoscopy, yet they benefit from a gluten-free diet. They DO have Celiac, but the doctors don't know how to diagnose it.
CC, aka Ceiling Cat, really needs a home. She drives Opal and Serena nuts and makes them anxious. I think that much of the time she is trying to play with them, but she is large and awkward and scares or upsets them a lot of the time.
But, aside from driving them nuts, CC is such a great cat! She's so sweet and loving and cute and playful. And here are two cute CC stories from just today!
This afternoon R took a break from work, and came into the living room. He played with CC and the ribbon toy- a fleece ribbon on a stick- for a little while. Then he went back to work. CC looked puzzled for a few minutes, then she picked up the ribbon toy and carried it into his office. She looked so pleased with herself, too, as she carried it: she had that sassy little trot that cats get when they are proud of themselves.
She took the toy from the living room, through the itchen and dining room, and into his office, where she laid it at his feet. She was rewarded with playtime.
Tonight, both men are in bed and I am awake in the living room. I could hear CC meowing very loudly and sadly outside R's bedroom door, which is way in the back of the house. I called her and she came into the living room, carrying the ribbon toy! So cute! She quacked her sad, quacky little meow for a few minutes, then she went back to his room and took the toy with her.
Poor CC! She really wants R to play with her. She's such a sweet kitty.
Today I had a terrible headache, the worst I can remember having in almost a decade, and maybe the worst I have ever had.
I had an eye exam today, and the headache started shortly after the eye exam. I didn't get dialated, so I don't think the eye exam was the problem. But the headache started as I was walking out of the clinic. It was minor at first but over the next hour (while I browsed in Marshal's and waited for R to pick me up) it got worse and worse.
It felt like a combination migraine and sinus headache. It started behind my eyes and spread to my head, then to the rest of my upper face and my ears. My eyes felt stabbed, my face hurt, my ears and jar hurt, and my skull hurt all over. I felt as though my head were in a vice. I also felt as though my throat were swollen, and veyr nauseated.
R picked me up (by then I was struggling not to cry) and I hung my head over the toilet for awhile, but there was no vomit. So I took a few tylenol and a tramadol and went to bed. I felt so cold. Even with my eyes closed the room was so bright. I laid there hurting for I don't know how long, until eventually I began to doze, and at some point the headche went away.
I woke up around 8pm. My headache was gone but I felt exhausted. Eventually we had some dinner (Smashburger) and around 11pm, my headache started returning. I had a few more tylenol and a tramadol and it's hovering now; I really don't want to take an ibuprofen but I might have to :(