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Sick and fragile

I’ve been MIA, but not because I wanted a blogging break. Not because I wanted to stop reading social media, or reading books, or crocheting, or using my laptop or iPad or phone.

I’ve been sick. Sick to the point that I was initially bed-ridden, mostly house-bound, and unable to function. It has been close to hell-on-earth. It’s an experience I had hoped to never have again, but the universe doesn’t seem to give a shit about my hopes.

In mid-October on a Saturday, I went to the local Renaissance Faire with Hub, Brother#2 (B2), my MIL, and Hub’s aunt. We were there for most of the day…it was overcast and mostly mild, though I went prepared with a mini-fan hanging around my neck. I haven’t been to the RenFaire in years, mostly because it’s the same acts and shops year after year. Hub likes to go and it’s one of the few times he gets to spend time alone with his mother, so I encourage him/them to go on their own. This year, though, B2 was in town and he expressed interest in going. I didn’t want him to have to go “alone” and I didn’t want him to feel obligated to follow Hub and his mom & aunt around, so I went.

By the time we were ready to leave, I was exhausted from walking around. I’d eaten very little, drunk nothing, and once in the car realized that not only was my body painful and weary, but I had a huge headache. On the car home, the headache turned to migraine (which I seldom get actual migraine headaches), with the fun of light and sound sensitivity. When we finally got home, I took two Tylenol (I never takes meds), drank almost an entire bottle of water, then went to bed. The next day I felt okay, but Monday I started feeling worse. The headache was back, the light and sound sensitivity were back, and I was nauseated. Again I took two Tylenol and went to bed…for most of the day. Then Tuesday I had a vertigo attack that included nystagmus. If you are not familiar…nystagmus definition. This is a factual definition. Emotionally, nystagmus is hellatious, makes you feel sick, keeps you from being able to stand, move, or even see properly. It’s terrifying. TERRIFYING. Add that to the spinning of vertigo and…I can’t even.

For the next six weeks, I had periods of vertigo and nystagmus added in with the nausea, light and sound sensitivity, headaches, increased tinnitus, and major imbalance. Imbalance to the point that I wasn’t walking on my own…if Hub wasn’t around I had to use a walker or cane. The vertigo and nystagmus came and went without provocation, and there was nothing I could do to stop them, either. I had to wait it out. Sometimes it was just a few minutes worth, sometimes with the nystagmus it went on for hours…once it stayed over 18 hours, through my sleep. I was extremely fatigued, so I basically went to sleep at 8pm and woke at 7am most days. Even when I was awake I was exhausted. I was barely eating anything (and not very balanced foods), and in 3 weeks I lost 20 pounds.

Hub made doctors appointments for me because I couldn’t do anything for myself, including talking on the phone. I went to my primary doctor who said it was a sinus infection and tried to put me on antibiotics. I didn’t believe her so I went to an ENT who said it was migraine and tried to give me a migraine medication. I took half of a pill and within half an hour got nystagmus that lasted for ninety minutes, so I didn’t take it again. Then Hub called the doctor that I had seen in 2004 for what was then diagnosed as Migraine Associated Vertigo (MAV), later the term was changed to Migraine Associated Dizziness. The doctor is one of the few who specializes in neuro-vestibular disorders in the country…his office was scheduling appointments into 2019. Hub pleaded and cajoled with the scheduling office, who contacted the doctor’s staff to indicate that I was a previous patient who was having a bad relapse. Bless Hub, he was one squeaky-ass wheel and he got me in for testing the following week, and then in to see the doctor the week after the tests. Meanwhile, I found a physical therapist who specializes in migraine associated vertigo and we set up appointments for balance retraining therapy.

After the testing (some of which I refused to do because I’d had it before, it was HORRIBLE to go through, and it had been inconclusive in the past — specifically the caloric testing) was completed, I started on the migraine diet (in other words, I stopped eating pretty much anything other than plain homemade protein, plain broccoli and cauliflower, and sweet or white potatoes plain) and began seeing some relief from the vertigo and nystagmus. It was slow, but progressively moving in the right direction. My balance remained bad, but that I could deal with…the nystagmus and vertigo were almost too much to bear. I was horribly depressed, crying a lot, unable to get out of the house, and living in darkness because of the light sensitivity. And every sound made me cringe in pain.

I saw the physical therapist for evaluation. She did a lot more testing than I expected, provoked nystagmus and vertigo, and asked me so many questions. The appointment was almost 90 minutes long…it was crazy. She said it was clear I had a history of motion sickness and balance issues, that my vestibular system was highly sensitive, and that combining that with the potential migraine issues, she couldn’t really pinpoint one reason for my issues. But she thought she could help me with balance retraining for my brain and vestibular system. We set up appointments for the following few weeks and went home. I was beyond exhausted.

Then I went to see the specialist who went through a few more tests, took recent history, and did his exam. He felt confidant that I was experiencing a relapse of the MAV, now called Vestibular Migraine (VM). He gave me printed information, recommended a book (that I’d heard of but never owned) on the migraine and headache diet, then recommended several OTC vitamins. He said if I didn’t see positive progress in 6-8 weeks, we could discuss prescription medications. But he said that since I’d been majorly symptom free for many years, he felt I could get there again with the diet and the vitamins.

I was depressed and exhausted. I was struggling to eat anything because I was afraid it would provoke the vertigo and nystagmus. I began (and am still) over-analyzing every food and food additive…so I basically only eat whole food that we make at home. And I’ve hardly varied yet outside my standard “safe” foods. I had stopped eating salt (in case I had Meniere’s which is salt-induced), and only added that back into my food in the last two weeks. I had stopped eating mayonnaise (which I love) because of all the additives, so we tried to make our own at home with limited ingredients, but it was kind of a disappointment. And I found I didn’t want to put it on much of what I’m eating at the moment, so we haven’t made it again. I tried the magnesium that the doctor recommended, but instead of helping to relax my muscles it actually gave me muscle aches and cramps…so I stopped taking it.

I started using my iPad to check email a few times a day in December. Around the same time I tried crocheting a little at a time. Both provoked my imbalance and rocking/swaying feelings, and made me tired. Only in the last week have I been able to turn on my laptop and use it briefly. Hub has been doing everything, including taking care of the dogs, hiring a dog-walker to handle the dogs when he isn’t home (at work) because I couldn’t, paying all the bills, doing all the shopping…everything. He finally caught a cold and slowed down…so I started trying to do more. Then I caught his cold and I’m still sick now. My brothers have tried to help out here and there. I stayed home for Thanksgiving (Hub made us a turkey breast) and I stayed home while Hub went to his Mom’s for Christmas. I only started wearing my glasses again yesterday, as I was afraid they would make my imbalance worse. Fortunately, my glasses don’t seem to bother me…important because I gotta go get my driver’s license renewed in the next two weeks and I need my glasses for that.

So, here I am, trying to get my life back. And I’ve added in this new fear of food. There have been some issues I won’t talk about, and then on Friday a health incident with my father, which I WILL blog about in a day or two. As for now, I need to get off the laptop because I’m starting to feel rocking/swaying from the screen.

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Test results update

I’ve completed recent tests and received all the results.

Neurology
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.

Allergy
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?”

W.T.F.

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.

Gyn/Oncology
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.

Insurance bullshit
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.

 

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Whole30 Week One done

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.

 

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Shock and OW!

I know that I said previously that I wouldn’t be seeing the neurologist for my EMG until September, but that changed.

I had such a terrible weekend. Saturday I basically did nothing because I felt so weak and tired. We went to bed at our regular time that evening, but at 12:30am Sunday morning, Hub and I were awakened by SCREAMING smoke alarms. In our house, all our smoke alarms are interconnected, so if one of them detects something every single alarm goes off. Not only does it make that horrendous alarm noise, but it also yells “FIRE! FIRE! FIRE!” I literally sat straight up in bed and hit Hub in the chest to wake him, then I turned the overhead light on. The dogs were freaking out, I was trying to get dressed, and Hub was trying to unhook himself from his CPAP machine, all while the alarms are screaming and yelling, and the dogs are running around the bedroom (we keep them closed in with us at night). We finally are semi-dressed and have shoes on and we open the door to the hallway and the screaming gets louder because there are more alarms in the hallway and in each of the bedrooms. I tried to get the dogs downstairs to give them treats (they always get treats when there are loud noises) while Hub tried to silence the smoke alarms (the dogs are still freaking out and Butthead races into her crate and won’t come out even though there’s an alarm nearly over her head still screaming). We don’t see or smell fire anyway, but Hub goes to investigate the whole house while I retrieve Butthead and rush the dogs outside and away from the noise. When Hub comes outside he tells me he has ripped down several of the detectors and the noise has stopped. I’m not happy, I’m afraid that there’s a fire in the attic or in the walls or there’s CO2 somewhere and that’s why the alarms went off. So at about 12:45, I find and call the non-emergency number for the fire department, and I explain what is going on. They take my address and say they’ll be out to the house shortly…and while we’re waiting the alarms go off again, so Hub rips MORE detectors off the ceiling and when the silence reigns again he takes the dogs into the basement so they can’t get out of the house and I go outside to wait for the fire department. To try to shorten this story–which really has nothing to do with this post–the firefighters come out to the house in the middle of the night, and after inspecting the entire house, they figure out that ONE of the smoke detectors has malfunctioned. And because it was wired into the “system”, it sets off all the other detectors in the house. Bless them, the firefighters were pretty awesome, and by 1:30am, they were walking back down our driveway in the darkness to load back up onto the firetruck they had left in the street. We were awake, trying to re-settle the dogs and ourselves, until about 2am.

Okay, so Sunday night I pretty much had a bad breakdown. I was just sobbing over how bad I was feeling and how tired I was and how afraid I was. I felt like I was getting worse, that my weakness was worse, my fatigue was worse, my imbalance was worse, and that now I was having trouble with my hands/arms and not just my legs.

For only the second time in the four and a half years I’ve been seeing T, I actually contacted her to seek guidance and help after-hours (or out of a normal session). The only other time I’ve done that is when my mother died. I am so grateful and so lucky that she took the time to talk to me in email (which is how I contacted her). I can’t say anything got resolved or that I even felt “better” in that moment, but knowing someone was out there to reach for–and who would reach back–was enormously helpful. Yes, Hub was here and he was being supportive, but this time it took a more confident and experienced communication.

When I finally caught my breath, I was so exhausted from struggling during the day and crying for hours that I went to sleep at 9pm. When I woke up the next morning, I called to see if my primary doc could see me, even though I didn’t think it would be helpful. They were able to fit me in just before lunchtime, and Hub took time off of work to go with me. After that phone call, I called the neuro’s office to see if he had any cancellations where he could fit me in for my test. The receptionist said no right away, because she had just gotten off the phone with someone else asking the same thing. So I asked to leave a message for my doctor, and I told him I was feeling worse and that I was having trouble with my hand/arm. He called within thirty minutes and fit me in for the EMG for two days later (that’d be today).

I went to my primary, who said she didn’t know what else to do for me except to send me to see a sleep doctor to see if I was having some kind of sleep disorder, and also to an infectious disease doctor to talk about Chronic Fatigue Syndrome. We were sitting in her office and I was so damn tired and frustrated that I literally put my head down on the edge of her desk and tried not to cry. She asked me what was going on and I told her, I was exhausted, frustrated, and scared. She immediately asked me if I was depressed. I was both annoyed and frustrated with this, because ANYONE in my shoes, with this length of exhaustion and weakness, and not knowing what was wrong, would be afraid and sad and upset. I thanked her for the offer but said I wasn’t ready to do that right now. She told me to try to stop focusing on my symptoms because I would surely make them worse by doing so, and to continue with my neuro appointment.

After that, we ran off to get my blood work done for the neuro and then we went home. Fast forward (cuz this is soooooo long), I spent most of today trying not to think about the test and/or what it might or might not say. I semi-obsessively check my laptop to see if my blood work has come in while trying not to spend time searching Dr. Google. We finally head off to the neuro office and within about ten minutes we are back in the testing room. I had read a little about the test(s) and heard both that it was no big deal and that it hurt like a mo’fo. I think I ended up somewhere in the middle.

The neuro doctor is very quiet in general, so there was almost no talking. The room had to be like 85 degrees, which I assume was on purpose because some of the testing is on muscles and maybe the heat keeps them relaxed? The first part of the test was where they put some thingys on you and then send an electric shock through certain nerves. The second part they use needles, stuck into your muscle, to record some kind of feedback. I asked what the needles were like and was told they are thinner and shorter than acupuncture needles. When he started zapping me with electricity, I asked if the needles hurt more or less, and he said “there’s no electricity with the needles” and went back to his zapping. So after another few minutes of silence and him randomly saying “zap here”, I ask him if his patients say the electricity is worse or the needles, and he says “it goes both ways.” *sigh*

The zaps range from a slight sting to a full-on-stick-your-fingers-in-an-outlet zap to OH SHIT THAT HURT LIKE A MO’FO. Fortunately, they are pretty quick zaps–up and down both legs in multiple places and along one arm and hand–and within about forty minutes we are moving on to the needle part of the test. He actually started with my arm and it really wasn’t all that bad, as long as I didn’t look at what he was doing. When he moved to my first leg, it was fine until he went into the inside of my calf and then it HURT. Especially he had trouble finding the right spot to be in and he had to sort of shift it around and push harder and that was pretty bad. The same issue happened with the other leg, but then we were pretty much done. After I got dressed, I asked him if he saw anything and he only said, “nothing jumped out at me” and said he’d have to go through all the data that had been collected during the test in the computer. I asked if there was anything I should or shouldn’t be doing, and he only said to stay hydrated and to rest. He scheduled us to come back for a follow-up for next Wednesday, so I have a week to sit and wait…

Tomorrow morning I go in for my CT Scan for my cancer follow-up. My father is driving me because Hub has to be in the office and I feel so weak and off-balance that I am afraid to drive myself. Friday I have a massage therapy appointment, which I hope I can get to, and I might have to have my father drive me again. I had cancelled my PT appointment for this past Monday because I didn’t think I’d be able to do it. I hope I can return to it this coming Monday, because I need to continue to try to make progress on my shoulder.

For now, I have a headache and I think I need to go to sleep. I have to get up early to start drinking the crap for my CT Scan, so off I go.

 

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Exclude me?

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*

 

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The weekend of (and a hairy tale)

I had my appointment with the psychic medium yesterday, but this post is not about that. I will post about it, but I can’t handle it right now.

This past week I had my hair color-fixed at the salon, and I ended up doing a purple-wine color, with blue underneath the major fall of my hair. It’s a little hard to see the blue because I’m wearing a blue shirt. You said “duh” but I honestly wore it in case I had any blue dye drippage, I figured you wouldn’t notice on the shirt. (the hair stylist took this photo outside of the salon)

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And this is the photo I took indoors a few hours later. Sorry, I still have a thing about privacy and I couldn’t get pictures of the back of my head because my shoulder doesn’t cooperate these days.

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I was surprised at how nice my hair looked considering how shitty the texture was prior to the dye-job. I asked her not to trim the “crispy” ends because I’m getting an updo for the wedding and I wanted the extra length for that. As it turns out–so far–the ends were far from crispy after I was dyed and washed. She said the demi-colors that she used were conditioning (and so is the blue, which isn’t demi), so here’s hoping. At present, I’m sitting here with a treatment on my hair prior to the first wash after the dye-job. I hope my hair isn’t in horrible shape after the wash in another half an hour.

Anyway, I like the colors, I’m just feeling a little shell-shocked at how I look with dark hair again. I’ve been living with the washed-out hair for so long that the dark color is DARK. It also drives me kinda crazy that I can’t ever make my hair look like it looks walking out of the salon. I know that’s a very common complaint for women, but shit…look at that hair on the first picture. It looks so soft and bouncy and shiny and lovely. It’s a trick, people! Stylists are witches…I’m telling you. They have some kind of voodoo magic, that’s why none of us can ever replicate it.

So yesterday, the appointment with the psychic. Last evening, I was tired. I slept really crappy last night, woke up at 6am to my father’s barking dog outside…and I never got back to sleep. I’ve been feeling crappy all day today. I basically sat in my recliner all day and tried to do nothing. My face and my head and everything felt swollen and stuffy. I don’t know how else to explain it. Like when you go through a pressure change? And then later, as the day wore on, I started feeling off-balance and that terrible exhaustion creeping up on me. When I got up to eat dinner with Hub, I really felt tired and off-balance and nauseated and I had trouble walking. I was upset after dinner because I knew I had to rinse my hair and then put the treatment on…and then wash the treatment from my hair.

And I’m worried about tomorrow. I’m supposed to go with my SIL and my nephew’s girlfriend to get updo’s done for the wedding. I don’t know if I’ll be able to do it. I’m not even sure how well I’m going to make it through the wedding. I feel so shitty…the wedding is supposed to be like five hours long… I’ll try to do nothing in the morning in the hopes I can make it to the salon and then to the wedding. I had hoped to do my nails tonight, but that’s out. Sucks more than I expected because I think my fingernails are a bit tinted blue from putting the treatment into my blue hair. I hope when I go to wash my hair that the blue tint won’t get worse. I’ll be at the wedding with blue-tinged hands…yay. Maybe I shouldn’t have waited until today to wash my hair for the first time since getting it dyed, but I was trying to keep the color fresh. Oh well…

The worst part is how bad I feel physically. Is it because of the emotions that came up yesterday with the psychic? Is it the wedding tomorrow we’ll be celebrating without Mom? Is it having family in town (and staying with us) without Mom? Or is it my physical health is just shitty? Did I eat something wrong? Is it a combination of all of the above?

Well, I hope when I get my hair done tomorrow I can get a picture of it. I wanted to have the blue peek through a little with the updo just for fun. We’ll see how it comes out. And hopefully I make it through at least the ceremony and the dinner. I’ll call it a success if I can do that…anything more than that will be gravy.

 

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I need a minute

I had my hair colored yesterday (more in another blog), which took about two hours. This morning I had to get up early to go to PT (her first appointment of the day) so that I could get to my neurology appointment on time.

This was my second PT appointment, the first with full treatment since initial appointments include lots of time for evaluation and pre-treatment measurements. I’d been doing the stretching exercises she assigned me since Friday, so I have been doing some work. Today, though, she did some more stretching…and it hurt. The physical therapist is a very nice, very low-key woman, who spends most of the appointments so far reassuring me that I will make progress and I will feel better. I’ve told her that I am VERY familiar with PT, as I’ve been multiple times over the years. Even so, she seems intent on keeping up with the reassurances…I guess she thinks she is being encouraging, I’m not sure. Anyway, the appointment was painful and I left feeling sore and tired.

When I got home, Hub told me he couldn’t go with me to the neurologist because he had a big meeting come up at work. My father offered to go, but I really didn’t want to have to deal with my dad’s pushiness, especially with a new-to-me doctor. So I said I’d be okay, and when the time came I headed off to the doctor’s office.

The doctor was on time, which was shocking to me, and his space in the suite was a combo office and exam room. It was a little odd, I’ve never seen anything like that. Normally you are in an exam room or you meet with the doctor in a separate office space. We sat down and he asked me what was happening. I gave him my history as best I could–including the recent bloodwork done that had all come back normal–and told him the issues I was having recently. He asked me a ton of questions, most of which I gave negatory answers to…it almost looked like he was reading from a list on his laptop! He then went through the litany of physical neuro tests–most of which I’ve been through before. When that was done, we sat back down at his desk and he stared at his laptop for a minute. Then he started saying that I didn’t fit in this category (ALS) or that category (Myasthenia gravis) or even that category (Guillain-Barré)…and each time he described WHY I didn’t fit. Having been alone, I tried to remember every reason why I didn’t match those categories, but I was busy thinking “oh, but I do have trouble swallowing!” (but I don’t REALLY) and “oh, my upper body IS weak” (but not REALLY) and “oh, I do have tingling!” (but probably that’s when I overdo or my limb falls asleep). It’s like he was giving symptoms (more than I just described) and I was latching onto them, worrying that maybe I really did have those symptoms and they were just on the mild side and what if I had missed the symptoms??

It was hard. I don’t remember which disease was ruled out by which missing symptom(s). I know he didn’t specifically rule out MS (multiple sclerosis) and I don’t know why.  I was afraid to ask. The final result was the he wanted to start with bloodwork for some muscle thing, and that he wanted to do an EMG (electromyogram). He said he had time to do it later that afternoon or tomorrow because of cancellations, but I didn’t want to do something unknown when I had the wedding this weekend. I said I wasn’t available and at that point the best they could do was schedule for the end of August. So I put it on my calendar and left the office.

I drove home, feeling weak and tired…and so disappointed, even though I really had no hopes for the appointment. I guess some part of me thought something would come of it, but it had to be pretty far buried in my subconscious. When I got home, Hub was still on the phone for his meeting, so he slipped over to greet me briefly. I said I was going upstairs to change my clothes, then decided I wanted to lie down for a while. I called my father to update him, had to listen to him talk about the time HE had some sort of muscle electricity test thingy twenty-plus years ago for a possible pinched nerve, then I stripped and got into bed. I barely settled in when Hub came in to check on me…he wanted to know if something happened that I hadn’t told him.

I cried. I don’t want to be sick again…or more than I already am. I’m tired of being sick. I’m tired of being tired. I’m tired of not knowing. I’m tired of having to change my life because I’m sick again, or more. I’m tired of having to grieve for the life I had, or the one I’ll never have, because I’m sick again, or more.

Hub hugged me, and even though I knew he wanted to hover and smother because that’s his M.O., he left me to rest. I just wanted a minute to mourn, you know? I needed a minute to come to terms with the disappointment, with the fatigue of it all. No one ever knows what is wrong with me. I’m always a syndrome…a catch-all that I’m dumped in because I don’t match any known disease or medical terminology.  I’m tired. So fucking tired.

I laid in bed for several hours–though I got up briefly to eat some soup because I hadn’t eaten or drunk anything prior to that–and just did nothing. I just couldn’t get up the energy to participate in life. My body and my soul didn’t want to body or soul.

I got up and had dinner later, and I talked with Hub like I was “normal”, but inside I’m hurting and I’m disappointed and I’m lost. Again. And writing these things has me crying again…

 

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