If you are struggling today (or any day)…reach out for help.
And also, this article is helpful:
I’ve completed recent tests and received all the results.
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”
Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.
Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)
And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.
I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.
Fortunately, I know when he’ll be back again.
But right now, that doesn’t really help. Tomorrow morning we’ll be driving Hub to the airport at 4am so he can catch a 6am flight to California for his sister’s wedding. And then I’ll come home and it’ll be me here with the dogs.
I had my appointment with T today and we talked all about this. I’ve got my plans made for the four days and four nights he’ll be gone, which include A LOT OF BOOKS from the library and a massage scheduled for Tuesday. Plus, I figure I’ll be renting lots of movies either from amazon prime or our on-demand cable television. And if things get bad enough, I’ll go spend time at my father’s house with the dogs. Not sure I want to sleep there because taking the dogs and all their paraphernalia will be a pain in the ass. Additionally, T reminded me to text her if I need to talk to her. I suspect I’ll be reading a lot of books to waste the time, both day and night, and napping on and off during all hours. Mostly I’ll be scheduling myself around dogs’ schedules for food and trips outside…and then trying to nap when they are sleeping.
Also, to prepare, we bought a security camera floodlight thing, that alerts me if there’s movement outside the door…and I can open the app and see live video of what’s going on (and it records the video if I miss the alert). It also turns on the floodlights with movement at night, along with low-light live (and recorded) video. So, at least I have that extra bit of security for myself.
Part of what I talked to T about is the fact that I don’t really know how to be without Hub anymore. I know how to be alone when he’s here (or at work), but I don’t know how to be alone when he’s not HERE. I’ve known him for longer than I’ve NOT known him. It’s been years since we’ve had any major separation (4 since his parents’ accident where he was gone for 3 days unexpectedly, but closer to 8 years for anything longer than those couple of days), and at that point I had my parents helping me while I stayed at their house…and we had Sweet Pea, who was easy as pie to take care of. Now I have this big house and I have Butthead, who requires a lot of energy and close watch. And I don’t have my mom nearby to hang out with when I get lonely, sad, or scared.
Another part of my concern is that Hub has health issues. He has diabetes (with minor leg and feet circulation problems), high blood pressures, and has a history of supra-ventricular tachycardia. I mostly am worried about him getting a blood clot in his leg from the traveling in the airplane…and even worse I’m worried that he won’t realize there’s something wrong. Or he’ll think whatever it is that is wrong isn’t a big deal and he’ll ignore it and not get to a doctor. Or that he’ll ignore it and get on the plane to come home and make it worse. The possible thought of losing him–especially considering how hard it’s been to lose my mother–is really overwhelming. I’ve been trying really hard NOT to impose my fears on him. The only thing I suggested is that he try to keep moving his feet and legs around on the plane just because of his circulation issues…and that’s all I said.
The probability of him having any kind of major problem is pretty low. The probability of me having any kind of major problem is pretty low. I have to just keep reminding myself that we’ll get through this. A week from now it will be over and we’ll be back to normal programming.
Until then, I am trying not to judge how I am handling things. I’m going to do my best to do my best, and then whatever happens happens.
I wasn’t sure what to do this year about mother’s day. Last year I sent Hub off to his mother’s house without me, and I spent part of the day with my brother and his then wife (now ex-wife). I talked with T about this on Friday, because I feel some guilt about not going to my mother-in-law’s to be with her, but I just am not ready yet this year. I know she understands–as does Hub–but I am at heart a people-pleaser, and so the guilt sat heavy with me. In the end, though, I couldn’t make myself go.
My father had mentioned to me Friday evening that he was going to go to the cemetery to visit my mother’s grave and he asked if I wanted to go. I didn’t answer him at that point, but Sunday morning when I saw him, he brought it up again. He said he knew it made me feel “uncomfortable”, but he wanted to make the offer for me to join him. I tried to be gentle in responding when I said to him, “I don’t feel uncomfortable about going, but the truth is, I don’t feel a connection to Mom there. I don’t feel it to Nana and Papa, either…it doesn’t work that way for me.” (my grandparents are buried in the plots next to my mother). For real, I feel more of a connection to my mother in her “den” closet, where she had a bunch of books stashed on a bookshelf…gardening, trees, cookbooks…I stumbled on them at one point and ended up crying. Because that’s my mother. The cemetery is just a marker for her physical body’s last resting place, but it has no history for me with her. My father only said OK and that he was okay to go alone, which I had to trust was true.
Somewhere around ten a.m., I texted my brother (the one with the ex-wife) to see what he was doing that afternoon. He said “nothing”, so I asked if he wanted to do something. What I really wanted to do was go back to the nursery where Mom and I used to go all the time, and where he and I went after she died. I also offered up the opportunity for him to come to my house to help me bake peanut butter cookies, which he (and my other brother) scarf up as fast as I can make them. His response was a preference to go to the garden center, so in some corner of my mind I knew it was the right thing to do. Even Hub said as much when I told him my plans for the afternoon while he was with his mother…he said my mom would be happy to know I was spending time there with my brother.
So after lunch, my brother and I set out for the nursery, which is about 20 minutes away. We talked a lot in the car about how he’s been doing with his depression and his medication, as well as some other health issues he’s dealing with. But once at the nursery, we talked about plants. We walked around the big place for about two hours–which leaves me exhausted and in pain today unfortunately–just chattering and touching plants and gagging over the high prices. We bought absolutely nothing, but it was worth the time and energy and pain, because it felt right. This brother and I, we have always been the closest of the siblings–with the exception of his married life where he withdrew from the whole family…and even then I tried to stay in touch with him as much as it was possible–so this connection felt good to renew. I know he’s struggling with his depression and his newly single life and his desire for a partner and…well, lots of stuff. And part of today was to remind him that he’s not alone. Doing that for my mom and for him made the day work for me.
I miss my mother so terribly. Every day. I feel like my identity without her has been lost. I don’t know how to get it back…yet. I’m still searching, and maybe someday I’ll find my purpose again.
I described (to T and a friend) the run-up to mother’s day as “being poked with a cattle prod when you’re already on fire”…and it’s true. That’s so much how I felt with all the television commercials and the holiday displays in all the stores and the radio commercials and facebook and instagram and on and on. I worry that it will always feel this way, this painful, this sad, this lost. Living without my mom has changed my life and changed me at my core. I don’t know how to adjust to that, or that adjustment is even possible. Somehow, I have to find a way forward. Last night I watched Bad Moms on television while Hub was still at his mother’s. There’s a point in the movie where Mila Kunis is talking to her movie daughter and she basically says, “I know you can make it through this because I’m your mother and I know what you’re made of.” It was such a dumb, funny, stupid, crazy movie, but that scene and those words (which I can’t remember exactly) really hit me hard. I know my mother believed in me and believed in my strength and my ability to persist. I hope I can find a way to continue to make her proud in that aspect as I try to find my way.
As a minor update, I finished all my bactrim pills successfully. I don’t know how much I feel better, but so far it seems the smell is gone, so I take that as success. I wasn’t too much more itchy the last day and half, so that was good. My stomach isn’t entirely back to normal yet, but I know the bactrim stays in your system for several days following the last pill. So hopefully another couple of days and my stomach will be better.
So I’ve taken six pills so far for what my doctor diagnosed as a sinus infection. I wanted to make note of what has been happening with the bactrim, at least for my future reference. Here’s what my historical experience prepared me for:
Upon getting my ABs, I come home and go look up my blog post from when I had to take these particular ABs, and I apparently have nausea, bad taste in my mouth, and dry mouth (editing to add, and dry/itchy eyes near to the end of the course of ABs) to look forward to for ten days at least. Two pills a day over ten days.
I’m definitely getting a lot of heartburn/acid reflux. My appetite is nil and the nausea is there for sure. My stomach hurts almost all the time, but that could also be from the acid reflux/heartburn. What is also a bit distressing is that last night before dinner (after the 4th pill at 9:30am that morning), I had a really bad hot flush on my face and ear, and I had anxiety. I’m not sure if the anxiety came from the hot flush or from the ABs. So I took another pill this morning at about the same time as yesterday…and tonight the hot flush started again before dinner. I didn’t even wait this time, I just got a cold pack and put it on my face until I was pretty well frozen. I didn’t get the anxiety, but I also stopped the hot flush early on, so maybe I stopped the anxiety before it started.
There’s no discernible change in the smell issue, yet. I’ve been trying to use different essential oils to distract myself from the smell (I just realized I had some good oils downstairs I could use…brown sugar and vanilla!), but it doesn’t last long.
Last night we invited my father over for dinner since my brother (the one that lives with him) is out of town for several days. Then tonight we went out for burgers with him and my other brother. Tomorrow Dad’s going to the grocery store with us in the morning, basically because he’s tired of being stuck in the house alone. He and I talked about how hard it is to be alone in the house all the time (while his house-mate is out of town), and I told him how concerned I am about being alone when Hub goes away. I told him I might end up sleeping there at night and he said if I did then they would be able to help me with the dogs in the early morning hours. I said I’d let him know. I’ve been going out for walks every day and when I get to his house, I call him to tell him to send his dog into the yard with us…sometimes he comes out to chat at that point. It’s hard because I used to do this to go hang out with Mom…and it’s not as easy to find things to talk about with Dad all the time. But I’m trying t keep up with the walking outside, so if he wants to chat with me he’ll have the opportunity.
I’m really tired of feeling so crappy. I want to regain my energy. I want to move forward.