RSS

Category Archives: gluten free

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.

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

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*

 

Tags: , , , , , , , , , , , ,

I’m SO over it

Father’s day is Sunday. It’s now Friday. I started asking about Father’s day plans of my two local brothers about three weeks ago. I got no response, so I pushed the subject again last Friday.

Background… Hub and I usually do Mother’s day here at our house for his and my mothers and for all our local siblings. We generally do brunch, because that’s what our moms like to eat. For Father’s day, we usually go out because my Dad likes to eat foods we don’t usually cook at home. It’s generally my married brother’s job to arrange Father’s day because Hub and I do so much for Mother’s day.

I eat gluten free. My married brother’s wife has a lot of food issues, in that she eats nothing. I have no idea how she maintains her weight, but she eats nothing. She’s allergic to olive oil, and in the past couple of years she says she’s not eating meat…well, except for hot dogs and chicken. And she doesn’t eat fish. And she doesn’t eat most vegetables. For those still paying attention, 90% of pasta (which is something she’ll eat) or pizza (another thing she’ll eat) is made with olive oil when it’s mass produced.

So I started pushing my brother about Father’s day. He spent Saturday  morning with my father but “forgot” to ask what he wanted to do about Father’s day, considering we’re all still struggling with the loss of my mother. When he finally asked Monday night by phone, my father said, “Whatever you kids want to do. I’d prefer to eat out, but we can eat at home, too.” (Btw, eat at home means Hub and I cook, because my married brother and his wife a) don’t cook and b) never have us over to their house. One time in the 10 years they’ve lived there we ate there, but MY husband grilled the food. And the rest of us prepared it in their kitchen once we arrived.)

So now it’s Tuesday and we’re chatting online about where to go for Father’s day. Lots of places around here are going to be mobbed, but even worse, my SIL doesn’t eat anything. So there are few places they go out to eat, even though they eat out more than they eat at home. We ran through a bunch of places, but most of them either have nothing for me to eat or nothing for her to eat. So I suggest a local diner, which has a MASSIVE menu. My brother says he’ll check with his wife. This is Tuesday after lunchtime. Wednesday at lunch, I email him to ask what the answer is about the diner, because if it’s not the diner, we have to figure something else out. And if the answer is eat at home (which my dad doesn’t REALLY want to do), then I need to plan and get out and buy food. Which I TELL him in the email.

NOW it’s Friday morning and I get an email from my brother saying his wife has “tried” the diner with a friend and it made her sick. So that’s out. And it’s FRIDAY MORNING and now what?

I seriously wrote like four emails, and attempted to write four different messages in chat, and I sent none of them. I’m so angry that when I got dressed this morning (after reading the email) I forgot I put on deodorant and I put it on again. I’m so angry that when I come downstairs and tell Hub what’s going on, I end up crying. I’m SO ANGRY that I finally tell my brothers to do whatever, that I’ll eat NOTHING at the restaurant because this is FATHER’S day and Dad should eat food he likes. (Do you think my SIL offers the same? No. And as for more background, at least 50% of the time she is supposed to do something with us, she doesn’t show up because she’s “not feeling well”. So we go through all this shit about what she can or will eat and then she doesn’t bother to show up…)

So my married brother suggests a burger place. Which I am just flummoxed by, because we could make fucking hamburgers at home (which we did three weeks ago for Memorial day when the my aunt and uncle came to join us). My father likes seafood and pork and bacon and sausages…stuff he doesn’t eat at home. So my married brother says, “why don’t we just get together and eat dessert?” My father doesn’t eat dessert. He likes to binge on fatty fried fun foods, not dessert. Where has my brother been? Does he not KNOW my father? No, the answer is, he’s thinking what is easiest for him, not what my father wants or likes. My married brother suggests we go out early Saturday evening to avoid crowds, despite the fact that I told him that Hub has to work Saturday afternoon. Because it’s all about him and his wife and her issues, not anyone else.

It’s now closing in on noon and we’re no closer to an answer. No one is saying anything anymore. I’ve already told Hub that if this keeps up, he and I are going to get barbecue take-out with all kinds of food that Dad likes, and bring it over to his house Sunday for dinner. And screw the rest of them who don’t like or can’t eat that food. Because I’m so over this. Why am I bending myself into a pretzel for them when it’s supposed to be about my father?

SO OVER IT.

 

 
 

Tags: , , , , ,

Nutritionally nerdy

A few weeks before Christmas, Hub and I went to a lecture given by a nutritionist who works in the same organization as T. I saw the announcement for the lecture in email, but then T also sent me an email saying, “this is really cool! I’ve been doing some research on this…” because the lecture was about the “second brain” in your gut. The gut-brain connection, basically. It was a topic T and I had spoken about briefly, and something that I had already done a little research on myself.

We attended the lecture, which had a very small audience–like six or seven people–and had a chance to meet with and hear from the nutritionist. Who told us multiple times that she was “nerding out” over what she was talking about. I found her information really interesting but a lot of it I’d already read about or heard before. Hub hadn’t, but I had. What was almost as interesting was the conversation we had with the nutritionist after her lecture was over. She had brought some drinks and food for us to taste that was supposed to be good for our gut. I tried a few things, and amusingly enough so did Hub after the nutritionist kind of challenged him to do so.

In the end, we took some of the nutritionist’s advice, including changing from drinking low-fat milk to whole milk (because low-fat milk is more processed and has more sugar)…organic milk even. Then we started a regimen of drinking Kefir every day, made again from organic whole milk, in order to get more good bacteria into our gut and colon. We had tried Kefir before but the brand that the nutritionist brought to the lecture for us to try was actually really good, so I make a special trip to a local organic market to buy it every two weeks or so. We made these couple of small changes after the lecture, and then Hub decided he wanted to go see the nutritionist for an individual appointment to see how she could further help our health. With his diabetes, high cholesterol, high blood pressure, and my gluten and stomach issues, we have been looking for better ways to eat healthier. Part of the problem, though, is that Hub does not eat a big variety of vegetables, but the nutritionist assured us that she was up for the challenge we were presenting as a couple.

We met with her, J,  last week for just over an hour. I think she was encouraged that we were able to make some changes already just based on her lecture. Most of the appointment was taken up with history and getting-to-know you information. I will note, though, that she has a really good sense of humor and seemed able to take Hub’s jokes in stride. Part way through the appointment I was telling her that we tried to eat an avocado–which neither of us really likes–in order to figure out how to get it into our diet since it’s a really good “fat”. I had asked the vegetable and fruit guy at the store to help me pick one, then we went home and cut it and tried to eat it plain. It was bad,  ya’ll. It tasted like…well, Hub said it tasted like a hardboiled egg that had gone bad. I’m not sure it was all that, but it wasn’t good. So in a weird twist of fate, J actually had brought a second sandwich in to work that day (I get hungry, so some days I pack TWO  lunches she tells us…Miss J who can’t weight more than 100lbs soaking wet) that had avocado slices, cucumbers, and mayonnaise. And lucky me (I actually knew about this ahead of time because I had stalked her on twitter before our appointment), J keeps a gluten free home, so the “sandwich” was on gluten free bread and made in a gluten free kitchen. She handed me half her sandwich and said, “Try this!” It was actually pretty good, but we have no idea why HER avocado was okay and ours was so gross. But I promised we’d try the avocado again.

And for the record, she’s asked me to start eating breakfast (yay I say sarcastically) because she thinks it might help with my fatigue; she’s asked us to try to cut back red meat to once (or twice) a week (although we don’t always eat red meat every week, it just depends); she asked Hub to cut back on his juice drinks and try liquid stevia instead of powdered; she asked us to try getting more dairy that is hormone free (since we both eat cheese and yogurt and milk). Then she asked us to check back in with her when we feel that these changes have become routine rather than something we “have” to do. And that we’d take things step-by-step, little bits at a time. She said she likes to “meet people where they are” and encourage small changes at a time. And in the meantime, she’s working on more food plans for us, with the hopes that Hub can find some more foods he can eat that are healthier but also actually doable for him.

I asked J what I could eat for breakfast that would be quick and easy and protein-full, because that was her suggestion to keep me full and energized. Mostly she suggested Greek yogurt, but she wanted me to get organic and whole milk again. She suggested a brand–the same as the Kefir we enjoy–and said I might want to try making my own granola again to put on the yogurt. We bought a couple of different versions of the yogurt she suggested and so far…blech. I’ve got a container of the vanilla flavored version that is passable, and I DID make my granola again, but I can’t say I love eating breakfast. I don’t feel like my stomach is awake and most things make me feel BLEH that early in the morning. I was NEVER a breakfast eater. I don’t like breakfast foods. I don’t like eating early in the morning. And these days, I don’t like trying to fit the food into my morning routine because I’ve been on the go so much these past weeks. BUT I AM TRYING.

I’m not sure how much Hub is trying his stuff. We are looking to eat less red meat, so that’s on our radar. We’re hoping J has more suggestions for dinners because we’re going to get tired of eating fish, especially since neither of us is incredibly fond of fish.

Oh, and yeah, she asked for copies of our recent blood work. She said she just loves to see how the blood work results work in tandem with each rather than how the doctors looks at the results for each individual test independently. She said she just “nerds out” over blood work. She’s a nice lady but she’s kinda weird. Of course, I’d be interested to see if she makes anything of our blood work, but then again, I’m kinda weird, too.

That’s our nutrition journey at the moment. Good times.

 

 

Tags: , , , , , , ,

And so I fly… (part 1)

Spoiler alert: I made it home alive (and so did my husband).

Yeah, so the trip is over and I survived the flights both going and coming back. It was not fun either time and I hope to not fly again. Ever.

Our round trip was Sunday. On Friday night I started getting nervous. More about whether I was going to forget something or get to security and have to throw something away. But behind that, I was starting to get nervous about the flight itself. Hub isn’t a good flier either, so he was starting to get nervous, too. In some ways, that made me feel better because he doesn’t have anxiety and yet he was getting worried about the flight. Anyway, we left for the airport and parked our car in the daily lot, then grabbed the shuttle to the airport. We found the security line, which ended up taking almost an hour to get through. It was crazy ridiculous. I did what I was supposed to, including putting my liquids (mostly makeup) into a clear baggie and on the conveyor belt outside of my small bag. But guess what? After going through the xray doohickey, they stopped me and a female TSA agent said she was going to have to pat me down around my waist and my ankles. I actually thought nothing of it at the time, just let her do her thing, then grabbed my stuff and my shoes and went to where Hub was putting his shoes back on. We hurried along to find our gate, which seemed to be the last gate on that concourse, of course. Once we got there, we found seats and tried to stay occupied. We had about 45 minutes before boarding. I kept asking Hub if we needed to be in line for something because people kept lining up, but he said they were getting their seat assignments, which I had already done online when I booked the tickets. Also, I had checked in online (for both flights) the day before so it would save us some time and money.

They finally started boarding the flight. We were almost in the last group to board because our seats were in the back of the plane. I haven’t been on a plane in 17 years, so I forgot how small the aisles and seats are. And of course, I’ve got nicely padded hips…and our seats were in the back, so I had to pass alongside all the passengers already boarded. That kinda sucked. When we got to our seats, we found the person in the window seat was already there. Thank goodness he was a small guy, so I didn’t feel like I was smushed in between him and Hub, who is a big guy. We put up the arm rest between Hub and me, then I went to find my crochet in my bag. But I realized REALLY quickly that there was absolutely no elbow room to crochet. Ugh. I was really counting on that as part of my relaxation technique. So I swapped it for a book, then plugged in the headphones for my iPod and put the earphones over my ears. Were you aware that United uses their headrest tvs to show the safety video? It’s like a commercial and they tried to make it entertaining. Hub and I just rolled our eyes through the whole thing.

Lucky me, the little guy at the window seat kept his window shade open. So I pretty much had to crank my head toward Hub the whole flight. I clutched onto Hub as we took off, wrapping my arms around his arm so that I was pretty much attached to him. I did that almost every time I felt the plane bank, or there was turbulence, or we sped up or slowed down. I felt every single shift in the plane. Every single shift. I am so hyperaware of movement because of my vertigo and imbalance that I knew when the plane climbed higher or descended even a little. I tried to think of turbulence as pot holes, though that didn’t help very much (we had a good amount of turbulence as we ascended, then more during the length of the flight). I cranked my music and tried to sing along in my head. I tried to read but the book was terrible and I couldn’t concentrate. The woman in front of me put her seat back–of course–so I put my table tray down and just rested my head in my hand and my forehead against the back of her headrest (against the tv screen, technically). I had the little air blower from the ceiling on high, so that blew down the back of my neck and kept me relatively cool. I swayed my head to the music, tapped my fingers, and intermittently clutched at Hub as we flew. With the time zone change, I was having trouble tracking how long until we were supposed to land. At one point I was all happy because I thought we were going to start descending any minute, only to realize we had almost forty five minutes left. That was just less than half the flight. UGH. So back to the music I went, swaying and singing silently.

The pilot announced we were going to start descent, so of course I plastered myself to Hub, even though we still had twenty minutes before landing. I closed my eyes and just tried to ignore everything except the music I was blasting in my ears. The landing was hard and fast, and it felt like it took forever to slow down and stop. Everything was so loud…louder than I remembered from all those years ago. It took forever to get off the plane, because as I mentioned we were in the very back, just four rows from the bathrooms. It was interesting to watch the debarking process, because people were really patient and allowed other passengers to get off in order. All except ONE GUY who was sitting behind us who had jumped up as soon as he could, and instead of letting us out like he should, he pushed his way right up along our seats so Hub and I (and our seatmate) couldn’t get out in order like everyone else. SO RUDE, dude! I mean, really? How much faster were you going to get out by being an asshole?

Have you ever flown into O’Hare in Chicago? That mo’fo is HUGE. Walking to find the baggage area to get outside for pickup took forever. We used the moving sidewalks, too, but I was so tense on the plane and so squished into the seats that I was exhausted and in pain. It was kind of slow-going. But we had landed 30 minutes early (YES!) in comparison to the schedule, so we had some extra time to get outside. One of my brothers picked us up (along with some relatives coming in at the same time but via a different airline) and we were off to the hotel to meet my parents and change our clothes for the wedding.

Our flight out was an hour and forty minutes. The wedding itself, specifically, was thirty minutes long. Then we sat for ninety minutes in the reception room, as appetizers were circulated and the open bar, well, opened. I hadn’t eaten before flying (it was too early) and after we landed we went to the hotel. I had packed a tiny bag of gluten free cheese crackers, which I inhaled at the hotel (along with about six ounces of apple juice), but that was all I’d eaten all day. Unfortunately, every single appetizer was either breaded and fried, or had some sort of bread base (egg rolls, spanicopita, bruscetta), so I had nothing to eat again for those ninety minutes. I had two Shirley Temples and some water…and a few Hershey’s kisses that were on the table. That sucked. I was so hungry and I was getting a bad headache. Then the soup came out…but I can’t eat soup because it’s usually thickened with flour. But the waitress said they had some fruit, which she brought out for me and a few other people there who had allergies. That was some awesomely tasty fruit, ya’ll. 🙂 Then they served salad, which was good enough.

Luckily, my brother (it was my niece’s wedding) had arranged for a gluten free meal for me, which turned out to be pretty tasty. I was impressed because normally “gluten free” means plain and dry. But it was pretty okay, including a nice big baked potato, which I scarfed down like I was starving. They ended up bringing out chocolate mousse next, but I was too worried about being sick on the flight home that I didn’t eat it. Before we knew it, Hub and I were retrieving our bags from the car and changing back into our travel clothes in order to leave for the airport to fly home. When we went in to hurry around and say good bye, they were just serving the wedding cake (which I couldn’t eat anyway) along with what looked like ice cream or custard or something, and maybe some other small desserts. I’m not sure because we were already a few minutes behind schedule and it was more important to me to say good bye to my family than to see what we were missing dessert-wise. Then we were gone, on the road to heading home.

 

Tags: , , , , , , , , , , , , , ,

Rinse and repeat

So here I am, just days away from surgery number two. I wrote about my pre-surgery nerves in this post last time. I’m feeling pretty crappy these days, some of which is because I haven’t been sleeping. I’ve been having nightmares and I’ve felt overheated at night. I’m terribly heat intolerant, so it keeps me away and/or wakes me up when I’m too warm. And of course, if I’m warm when I try to go to sleep, then I can’t fall asleep. So it’s been sucky sleeping lately. Not a great way to go into surgery, I’m sure. Also, my throat has been dry in the mornings and my nose feels stuffy. I’m hoping it’s allergies, because I can’t take the thought that it’s a cold, which might (or might not) postpone my surgery. No fever, so I feel like just a cold won’t be an issue, but my anxiety makes me worry about it. Repeatedly and often. Woo.

In my previous post, I talked about all the prep work I was doing in advance of surgery. I re-read the post and feel kind of embarrassed at how much I was doing. I made all that food and ate none of it. I got all that yarn and used none of it post-surgery. I borrowed all those books and it was over a week (or more) before I could read anything. I used almost none of the things I packed to take the hospital. Even so, some of it was worthwhile. I’ll be changing and washing sheets in advance, because I like the comfort of the laundry detergent when I get into bed. Hub will be getting me deli turkey and making me gluten free biscuits because those were the two things I ate for the first two weeks, almost exclusively (great diet, eh?), along with plain water. So no soup, no lemonade, no mushrooms and cheese…that was all a waste of time the first time.

I’ll pack my small bag for the hospital with pain medications (leftover from the first surgery, so we don’t have to pay for them a second time), my gluten free chewing gum (peppermint, to get my stomach working again), and my pillow for the ride home. I’ll have my lip balm and my cell phone and my advanced directive (again). That’s pretty much it.

I’m still going to the library tomorrow, so I don’t have to go soon after surgery, but I know now that reading will be nearly impossible the first week. Even watching television was nearly impossible, because my brain just wouldn’t focus.

And on top of things, I’ll be worrying about surgical menopause. Woo hoo. There are horror stories about this, and I’ve been trying really hard not to read them. I talked with T about them at my last session, but I’m not sure I can be reassured about this. I’m mostly worried about the insomnia…and then the possibility for increased depression and anxiety. There’s a whole host of new symptoms for SM that I’ll have to learn, and that my health anxiety will have to feed on. I’m wondering if acupuncture might help. I’ve been trying to read about it, but I know full well that acupuncture doesn’t always work for everyone.

I finally saw the massage therapist last week. It was so nice to have her work out some of my muscles. I wasn’t able to lay on my stomach, but she was able to work most everything while I was on my side. I can’t say how much it all helped long-term, but it felt really good during (with the exception of the trigger points which generally hurt like a mofo). I really hope I’ll be able to get back to her more quickly after this surgery than after the first. My muscles really took a beating after surgery.

No matter the fact that I went through this surgery (basically) once before, I’m nervous. I know now how it is going to feel to wait in pre-op…and how I felt in the post op, and how gross and out of it I felt in recovery. And on the way home. And the immediate days following. I made it through, obviously, so I get that, but it doesn’t mean it was easy and/or no big deal. In the back of my head, I’m also thinking about actually making it through the surgery. I’m afraid. I don’t know another way to be at this point.

My PVCs have mostly dropped off in the last two weeks or so. I had some last night, but they were mild and didn’t last very long. I hope that continues, because I can do without those.

 

 

Tags: , , , , , , , , , , , , , , , , , , , , , ,

Don’t pity me

I’m doing that just fine all on my own. Bleh.

Seriously, this is the first day I’ve been able to concentrate even a little bit. Prior, I was feeling very foggy and dizzy, and like my eyes wouldn’t focus. It was pretty horrible. Thursday I was trying to be a good girl and eat protein, so we had some deli turkey in the house in preparation. Turns out there’s something on there in the gluten range (maybe the seasoning? we don’t think we’ve bought this meat before, it was fresh-made at the store) that was affecting me and I spent most of Thursday suffering from hot-face, which made me miserable. It wasn’t until after I’d had some for dinner that I realized it was probably the turkey and I had to just wait it out. I didn’t start feeling that going away until sometime Friday mid-morning. Meanwhile, my sleep has been close to nil. That has been kind of horrible because it aggravates anxiety big-time, as all us anxiety sufferers know. My PVCs remain annoying…

I’m in some mild pain, but taking ibuprofen twice a day, just to help speed healing, I hope. Friday the doctor’s office called to check on me and the nurses warned me to be very aware of blood clot symptoms, especially with the weekend coming. She told me to not wait and go to the ER if I felt I had symptoms. So now I’m spending the majority of my time worrying about a blood clot. Fan-fucking-tastic. And apparently this is an issue for MONTHS after a surgery. So my leg is bothering me and it’s kind of freaking me out, but I am trying to remind myself that it’s probably a muscle ache and maybe must my knee hurting (which is normal for me). I’m afraid…there’s so much going on in my body, I have no idea how to identify what is normal and what is not. My heartburn is pretty bad (with accompany nausea!…yay), even though I’ve gone back on my regular digestive enzymes and probiotics…they haven’t really taken over yet. So that means I’ve got pain in my chest which radiates to my arms and back. And I have to decipher that as being different from being short of breath and in pain which could be a clot my lung (versus in the leg, of course). This has not been a good experience for me…I’m sure T is thinking “Ooooh, exposure therapy” but I’m thinking OMG how am I going to get through this?

I feel very split up about all this…trying to realize I had major surgery and still feeling like I’m supposed to be active to help heal. They’re all telling me to listen to my body, but my body LIES to me. So how am I supposed to know how much to rest and how much to do? I had major surgery and yet they sent me home five hours after. Which is it? Major surgery and rest, or get up and move? I’m FINALLY able to stand up and sit down without groaning from the pain and stretch, but it’s still uncomfortable.

Eating is difficult because of the nausea and the heartburn. I have no appetite, but I know without food I won’t gain stamina or energy. I’m trying to drink but I’m NEVER a good drinker so I’m sucking with that, too. Which apparently could lead to more potential blood clot issues. So much fear in my body at the moment. I told T when I had my phone appointment on Friday (which I could only talk for half an hour, I was so out of it) that I feel like I’m in the midst of anxiety even though I didn’t feel ANXIOUS. She said it’s my body responding to the trauma of the surgery…and to just try to use my tools even though it’s not really “anxiety”.

My head feels full and pressured. I have a headache (while I’m taking 800mg of ibuprofen…wtf is up with that?) and I’m so tired all the time. I want to be past all this NOW.

On top of all that, Hub has a really bad cold that came on Tuesday night. I’m SO lucky that I haven’t gotten sick yet, even though he’s feeding me and getting me drinks. It’s really really sucky, though, because he’s not touching me. No hugging, no kisses, no rubbing my back or my hands or my arms. No comfort. It’s a really big loss for me… I want so much to be soothed and because we’re trying to keep me from getting the cold, I feel bereft and alone.

Like I said, I’m doing a find job of pitying myself. And now the eye floaters are back, so I’m done here.

 

Tags: , , , , , , , , , , , , , , , , , , , , , , ,