If you are struggling today (or any day)…reach out for help.
And also, this article is helpful:
I don’t feel any differently than before I started, except today I had a weird snack-attack. I’m not sure what it stemmed from and I tried to make my way through it by sticking to the “program” and attempting to eat a “small meal” rather than an actual snack. Then I got partway through the food and I was feeling uncomfortable in my stomach. So I put the food back in the fridge for later, but at the moment I still feel kind of full and bloated. Not sure I’ll be eating dinner or not…Hub is out for most of the evening doing some work stuff, so I’m on my own.
The “program” says that by this time I should be feeling “Tiger’s blood” and be full of energy. Big N-O on that. And despite the “program” purporting otherwise, I have no reduction in my aches and pains…and in fact I’ve gotten a new foot pain that has bothered me enough that I asked my massage therapist if she can squeeze me in tomorrow for an hour to take a look…or a feel, even.
We’ve continued with our food planning, but this weekend we didn’t do a big cook like the previous two weekends. Of course we had just cooked a whole chicken Saturday night, so maybe that counts. Plus, it’s meatloaf tomorrow night, which will give us a bunch of usable leftovers.
Although we are not supposed to look, I have been keep track of my weight. Initially, I lost three pounds the first week, but I’ve since put it back on. Not really sure what that was about. Lots of people said they lost weight, even though the “program” says it isn’t really for weight loss.
I don’t sleep any better and in fact have struggled to fall asleep during these weeks. Some of that might be the excess pain I’ve been dealing with. I just can’t get comfortable these days. It sucks.
That’s pretty much it. Today’s been a crap day…PT was a bitch for my shoulder. Despite my increased functionality and range–to some extent–the pain has not reduced. It’s very frustrating. The PT keeps telling me I’m improving and doing well, but my pain is still there and so I feel kind of defeated.
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.
I’m not going to do a big thing on the Whole30 unless something major pops up. As of right now, I feel pretty shitty. Some of that I can attribute to the Whole30, some of it is from what has been going on with me in general prior to the Whole30.
Relating to the Whole30, everything I’ve read says you feel worse before you feel better. Well, yay. Seems to be spot-on for me. What wasn’t spot-on was some odd urge to “kill everything” at one point in the last week…Whole30 “timelines” say that is supposed to happen. WTH?
I haven’t had heartburn issues in a while, but I’m definitely having them now. It’s not the classic burning, but it’s the tight throat, sore throat, the cough, the heavy chest, the burping. Along with that, my chest muscles hurt from the cough and silent heartburn, and I hate it when I get this. Chest muscle pain drives my anxiety right up to the roof. I’m only hanging on to my sanity over it because I just had all the cardiology tests recently, and I’m reminding myself that I know these symptoms from prior heartburn episodes.
I’m also having lots of joint pain and muscle issues, which I assume are related to this early portion of the Whole30. Headaches, more at the end of the day than at the beginning. I can’t tell if I’m fatigued, because…well, yeah.
And I’m having stomach pain. It’s not a new pain, but for the last day and half it’s been pretty bad. I’m thinking it might be from either the almond butter or the apple (or maybe the cherries??) I ate during one of the last two days, as those are the only “weird” things I’ve eaten.
It’s frustrating that we’re doing all these changes, making so much effort, and I feel worse. I understand that there’s a “detox” stage, but that doesn’t make it any less annoying.
Meanwhile, I’m SO BORED with the veggies we’ve been eating, which has basically consisted of broccoli and cauliflower. Now, on a normal basis, that’s what we eat because that’s what Hub eats in the way of veggies. I’m generally okay with that because that’s a dinnertime thing. But on the Whole30, you are told to eat veggies at every meal, including “Meal 1” (which is breakfast-time)…which means I’m freaking eating broccoli and cauliflower all the damn time. I’ve tried to intersperse some salad, too, and when there was a beef-veggie soup available, I ate that for breakfast (but Hub takes that to work so I need to make sure he has that available for him). We’ve got turkey soup, now, so maybe that’ll be what I eat for breakfast tomorrow… Tonight, it’s fresh baby spinach…thank goodness! Also, without any kind of “normal” condiments (everything has added sugar), I’ve been eating Whole30 approved dressings and mayonnaise. The one mayo I’ve tried so far (I LOVE MAYO…hellman’s…) is kinda gross. It’s an avocado mayo and it has some sort of taste that is bugging me. Unfortunately, it was on sale when Hub found it, so he bought 3. Fortunately, a) they are small-ish jars and b) if I put yellow mustard with it, then it’s tolerable. I didn’t think I’d miss sauces as much as I do (which isn’t a ton, it’s just one of those things…) but I’m managing.
I’ll have an update on my health / doctor’s tests hopefully in the next post. I see the allergist tomorrow morning, and then the neuro Wednesday evening.
My last appointment with T, I was telling her how horrible I’ve been feeling physically again. Among the conversation–other than grief and emotional issues–she mentioned that she had gone onto an exclusion type of diet. She’s been having some gastro issues, along with her fibro and post-shingles issue. I don’t know how SHE got onto the idea of doing a food change, but she mentioned to me that she was doing it and how well it was working for her.
I have already eliminated gluten due to a wheat allergy. In the past three months or so, I have cut out a majority of dairy in the form of cheese (I could never have imagined!), though I have not been entirely strict about it. Mostly I cut cheese out because I felt like I was eating it daily because I was accustomed to eating it and not so much because I was enjoying it. So I have changed to eating cheese when I want it–which isn’t as much as I had thought–and similarly with other dairy items. Again, I didn’t cut it all out, I just cut back a lot. Maybe 70% less than before.
The exclusion diet that T had been trying was something called the Whole30. I’ve been reading about it and learning the rules, and Hub and I have decided to give it a try. What makes it less…stressful, is that they suggest you do this for 30 days and then start re-introducing “non-compliant” foods one at a time to see what kind of reactions you have. When I say “reactions” this time, I mean physical and emotional reactions, as well as digestive/allergic reactions. Apparently Whole30 excludes all grains (including corn), legumes, dairy, certain oils, and added sugars (no matter if it’s real or fake sugars). They also urge people to eat as clean as possible, with organic (and hormone-free, and non-gmo, and humanely raised) meats, fruits, and veggies. Of course that can be difficult for a lot of people, both in terms of access and budget, so they suggest you do the best you can within your circumstances.
Generally speaking, Hub and I eat pretty balanced meals at dinner. We cook a lot, mostly because of my wheat issues and Hub’s diabetes. What will be more difficult is breakfast (which I don’t eat and I have a tolerance issue with eggs, which mostly is what they recommend for breakfast) and lunch. I don’t eat or like breakfast foods, so I am concerned about how to handle that. I eat split pea soup with mushrooms every day for lunch, with little variation. It keeps my bowels working well and it also means I don’t have to THINK about what to eat every day. On the Whole30, no legumes means no split peas. Hub eats a lot of dairy and lots of bread (and grains) and cereal, especially for breakfast. He eats lunch out when he’s at the office more than he takes food from home, which means more adjustments for him.
Although I’m worried about what I’m going to eat, I feel like it’s going to be easier for me in most instances than for Hub. I don’t eat out nearly as much as he does (mostly once a week so we can spend time with my father), I don’t eat hardly any bread–and can give up the stuff I eat without any problem–and I don’t eat cereal. I can more easily adjust to eating no added sugar because I don’t add sugar to anything except tea, which I rarely drink. (And when I say no added sugar, I mean NO SUGAR in any ingredient in any form in any item with the exception of naturally occurring sugar in whole foods.) And I think I can adapt my “first meal” of the day more easily than Hub, because I’ll just eat leftovers from one of our dinners. Also, I don’t get bored with food to the point that I won’t EAT the leftover food. I’ll just eat it because it’s easy, but Hub will turn his nose up at it if he’s “bored”.
We’ve already started a menu for the first week, at least for dinner and for Hub’s lunches. I’ll probably eat more salad than I have in recent months, because I’ll put leftover proteins on a salad and eat it that way with homemade oil and balsamic dressing, or homemade mayonnaise (or I’ve found “compliant” avocado mayo).
The Whole30 says no snacking because if you’re hungry in between meals then you’re not eating the right amount of proteins and fats with your meals. Lots of people in videos basically said they snacked on veggies or protein snacks when they thought they were hangry in between meals. Again, the idea of the Whole30 is supposed to be “resetting” your mindset when it comes to what you’re eating and why you’re eating it. Some people do the Whole30 because they have a kind of addiction to food, or an unhealthy relationship with food (hello! right here!), while others use it to figure out what might be bothering them physically or emotionally.
T told me she had tons more energy, stopped using antacids, her fibro pain was reduced, and her post-shingles pain was reduced. A lot of people I’ve seen on youtube or read on blogs have had similar responses, with reduced pain, reduced inflammation, and better gastro symptoms, better sleep, better energy while on the Whole30.
It’s going to take a lot of planning and forethought for us, which is difficult because a lot of evenings we’re kind of like scrambling for dinner…and we never have lunches or breakfasts pre-planned. We’ve never planned out meals for the week on a Sunday, or cooked lots of meals in advance… We’ll see how it goes. We’ve been talking a lot about it for the last two weeks (we wanted to wait until after the wedding to start, because eating out is nearly impossible to do on the Whole30 plan), and hope that we’re doing enough planning to make it through the month. I really want to try because if there’s some kind of foods that are bothering me and causing me this hideous fatigue, I want to know. If it isn’t rooted in food, then I can move on from that.
I do see an allergist in the middle of August, so I hope to eliminate that possibility as well. The neuro test isn’t until the first week of September, so that’s kind of a long wait for me, which sucks. Until then I have to just keep pressing on, and rest when I can’t do anything else. *sigh*