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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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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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No Joy Whatsoever

So Saturday the 4th in the evening, I got hit with a wave of exhaustion and wooziness and then weakness that left me feeling like I wasn’t able to stand long enough to even shower. Sunday morning I thought I was okay, but by 2ish, I was feeling the same again. This was more than just feeling tired, it was long past tired. It was close to how I felt the day after my surgery. Exhaustion, severe and overwhelming. Weakness like I had no muscles left after a 100 mile walk in one day. It was beyond beyond.

Monday morning I called my doctor’s office but no joy for an appointment, so Hub and I went off to a local walk-in/urgent care clinic not far from our local hospital. After 2 1/2 hours of waiting, ekg, bloodwork and pee, the doctor (who was wearing a face mask and coughing phlegmy) told me she found nothing in my tests but couldn’t rule out a stroke so I needed to go to the ER.

At 2pm, we checked into the ER and spent the next 5 1/2 hours being pushed from triage, Ekg (again), bloodwork (again), pee (again), the “main” waiting area, then to a small, isolated, windowless room with several other couples and individuals (some of which were contagious based on the fact that two of them were wearing masks–both of which then took off their masks while they were in there with us). This cramped little space is where we sat for another 90 minutes while they gave me IV fluids, while the others around us also sat getting IV treatments…along with two older people slouched over in wheelchairs (where there was no space for them) and another person slept on a chair. They finally found us a room in the ER, where the PA who saw us did a neurology physical test, said probably no stroke and they don’t want to do a CT without a real reason. So she did thyroid test (again) on the bloodwork which came back normal…as did all my blood work from both walk-in clinic and the ER lab. So she sent us home saying I should see a neurologist as a follow-up.

My doctor’s office called the next day and said, “come in so we can talk about what’s going on”, so I did on Thursday. Part way through the appointment (at 3pm), the doctor said “you’re having shortness of breath and leg pain, you need a lung ct and leg ultrasound to rule out DVT and lung blood clot”. Luckily for us, the nurse was able to hustle us an appointment at a local radiology office instead of sending us back to the ER again. Unfortunately, the nurse at my doctor’s office made an appointment for us at the location that was forty minutes away in the “city” versus the one that was ten minutes away and the same distance from our house. And she actually only made the CT appointment, not the leg ultrasound appointment. We were lucky that the person managing the location we went to fit us in for both tests within an hour…and the techs were both very nice about the situation.

The radiology place won’t tell us anything, they just fit us in for both test and sent us home at 4:30. I called my doctor at her office, who said she would call from home and get test results (bcuz her office closes at 5pm) and call me once she has them. She called at about 5:50 to say both tests were normal, for me to pick up in the inhaler she prescribed because my chest had sounded “tight” and she was thinking I might have asthma…and then I should rest, hydrate, and get back in touch if I get worse.

I’m at home, still feeling crappy and tired and weak. I’ve been eating normally, trying to drink as normal as possible, and trying to rest. Because of how badly I was feeling, I had a shitty panic attack Sunday afternoon (before the walk-in/ER visit) that I kept trying to get out of but it just kept recycling when I thought it was over.

Ten days after my appointment with my primary, I went back for a follow-up because I wasn’t feeling much better and the inhaler was giving me leg cramps. The doctor listened to my lungs and pronounced them clear, said I could stop the inhaler, and that I should go home and hydrate and rest some more. She said there’s a virus going around and that it wasn’t unusual for the main complaint to be exhaustion. And in fact, she was leaving shortly after my appointment because she was having the same symptoms I was (although she was also getting a little cough).

So I’m still home, still hydrating, still trying to eat normally, and I’m resting so much I’m tired of resting. Sadly, I’m still feeling really overtired and I have no energy for anything. It’s been a struggle for me to keep up with taking the dogs out repeatedly during the day (and I can’t leave Butthead outside alone because she eats stuff in the grass and then gets sick), and I’ve hardly been able to do more than one or two loads of laundry in a day. Going to the grocery store or to my therapy appointments leave me exhausted. Tomorrow I go for massage  therapy and I have no idea how I’m going to feel afterwards.

And through all of February, my pain has been ramped up. I can’t seem to get around it. My muscles all hurt. My stomach hurts. I’m having lots of trouble sleeping. I haven’t crocheted since January. I haven’t done much of anything since this all started…

Tonight…well, tonight Hub goes for his sleep study to see if he has sleep apnea. That means I get to go out into the dark and the cold tonight to let the dogs out before bedtime. It also means I will be sleeping alone tonight. Not a happy me!

Did I mention that Hub’s job is transitioning now that a bigger corporation bought his smaller employer? Did I also mention (can’t remember if I have) that they’re screwing around and even though we technically have health insurance with the new company we won’t actually have cards until some unknown time in mid-to-late-to-end-of March? So if we get sick or need the ER or to see a doctor or to GET OUR MAMMOGRAM we can’t. Or we pay on our own and maybe the insurance company might reimburse us later for some small portion of the amounts we paid? (*sob*) Talk about anxiety…

 

 

 

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Post colonoscopy refresh

Well, here I am, back on my recliner trying to recover from the last two days. The last five days?

The prep, while not as bad as it was for my surgeries, still sucked. I would definitely use this prep again in the future because it was less liquid to drink, and most of the liquid required was plain water. Also, it was split into two days, so that made things easier all around.

The colonoscopy, as everyone said, was the easiest part of the whole thing. The anxiety before (and now some after), is harder. The prep is harder. The half hour before going in is harder. Screw that, the hour before going in is harder. I still feel woozy-ish from some of the drugs, but I also think some of that is the lack of nutrition I’ve had over the last five days. I’m trying to go slowly back into food, both last night and today, so my intake is still smaller than normal. So I’m tired, I’m woozy-ish, and I’m anxious a bit.

Why anxious?

Well, let’s talk about the second worst part of yesterday (the prep was pretty bad for TMI reasons)… We get to the procedure center a few minutes early and checked in. They took me back only a few minute later than I had expected but not bad, really. I go to the bathroom one last time and they take me into a curtained cube area. There are seriously like 12 or 14 beds in this whole pre- and post-procedure area. It started feeling a lot like a cattle call. Get ’em in and get ’em out. So I get into my designated cube area and I undress and pull on my lovely gown, open in the back of course. I tuck my bagged clothes under the gurney as instructed and I get onto the gurney. I’m there about ten seconds and I get an excruciating abdominal muscle spasm. I start gasping and I hear the nurse on the other side of the curtain “you okay, hon?” So I say “uh” and she comes in and I tell her what’s happening. She seems sympathetic but not entirely interested. Says it’s probably from the prep and could she please have my arm to get my blood pressure? I tell her my BP is going to be through the roof because I’m in terrible pain and she just takes my arm and hooks me up. Shortly after taking my BP (which was high, of course), I get another spasm, and then another, and then another. It’s so painful and I want to cry and go home and I want Hub but the nurse says I’m up next and there’s no time for Hub to come back. I’m clutching my stomach and there’s a huge hard baseball sized lump under my skin and she’s asking for my OTHER arm so she can get the IV in. She promises to tell the doctor about the spasm but doesn’t seem distressed. Finally, the spasm gives up and the IV is in and the anesthesiologist comes in to talk to me. Then the doctor comes in and I tell him about something else and then alert him to the spasm. “Probably from the prep” he tells me.

If it’s the prep, then why have I had them before? If it’s not the prep, was it dehydration? I don’t know, honestly, and I doubt I’ll ever know WTF they’re from. What I know is, they hurt like a motherfucker and having four in a row was so painful that I was actually GLAD to be getting anesthesia. (Maybe it was dehydration and being slumped over on the toilet for two days. Hmm…)

Even after the colonoscopy, last night, and today, my stomach is so sore from the spasm. Cramp? Maybe it’s a cramp. Stomach charlie horse? I have no idea. But moving at all is uncomfortable because that muscle is apparently involved in every-damn-thing I do. And of course the fear that it’s going to happen again, because it actually takes my breath away it’s so painful and so out-of-the-blue.

Meanwhile, post-colonoscopy, I’m told I was very nice to the nurses and kept thanking people. Literally, as they were putting anesthesia into my IV before the procedure I blurted out to the two nurses “thanks for taking care of me!” and then I was out. So when Hub assured me that I was nice to everyone even before I was really conscious afterward, I said, “Well my mother would be proud of me.” My stomach was really inflated with air from the test, so I was really uncomfortable. They made me go to the bathroom and drink, then Hub helped me get dressed and we left. Less than two hours from when they took me back to when we got out to the car. When we got home, I walked around the main floor of my house and passed air for half an hour. I know that I kept asking Hub questions about what the nurses and doctor said after I “woke up”, but I couldn’t seem to retain the answers at the time. Every time I lapped around near Hub, I would ask him another question that I KNEW I had already asked, but the answers just kept eluding me. After being on my feet for thirty  minutes straight, I was done, so I went upstairs and changed and got into bed with a small container of yogurt to get some probiotics into my system. I had some apple juice, a small omelet and some jello for dinner. After a couple of hours the air seemed to have left my system, so my intestines felt better but my abdomen still hurt from the muscle thing. I was still kind of woozy and out of it, but I managed for the evening.

I didn’t sleep great, but that’s not news. This morning I didn’t want to get out bed, but I did it because I knew I needed to be moving around. And I knew I needed to get eating again, and drinking.

The doctor said they found one small polyp, which they removed and will send for pathology (2 week wait for that). They also found internal hemorrhoids, which I can have treated at a later date if I decide to do so. “A few” external hemorrhoids, too. Otherwise, I’m told there was nothing else of note, and my prep was “good”. Once they get the pathology back, then I’ll hear if I have to go back for my next colonoscopy in five years or in ten. I’m assuming it’s not cancerous, but I don’t know if I’m being naive about that or not. Either way, won’t know for sure until the report comes back.

Onward to my next job for this week…help my dad go through his mortgage refinance on Thursday. It’s supposed to be hella cold, single digits…yay.

 

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Insider information

I went through a couple different ideas for titles for this blog post, but this one seemed the most benign. Because I’m going to talk about my upcoming test on Monday.

It’s a colonoscopy.

I am less than thrilled, and at the moment, getting more and more anxious about it. Unfortunately, this last week, I’ve had stomach issues that resulted in me wanting to just cry all day and all night. I don’t get really constipated often, and this time was the absolute worst (and I have NO idea why this happened). It was made worse by the fact that I think I have a hemorrhoid (sorry, TMI) which was causing me pain every time I tried to go to the bathroom. Needless to say, the latter half of this week was bad. I had to call the GI doctor’s office late Thursday evening to see if I could take something because there was no way I could make it through to Sunday when I start my actual bowel prep. They said yes, I took something, and it hardly helped at all.

Are you aware that there’s a guy on Reddit (which I almost never read unless it’s a link from somewhere and even then it’s rare) who didn’t poop for a month and then posted about his “ordeal”? OMG, it’s both hilarious and horrendous. Don’t go look it up because there are links to pictures (which I didn’t look at), and lots of advice and a (supposed) doctor who urges the guy to go to the ER. The end result is that he goes to the hospital and eventually goes home and is fine. But there were thousands of people checking in to see if the “poop guy” had actually pooped.

I spent too much time on the internet Thursday and Friday.

Friday I finally had some relief (at the expense of more pain than I would have liked), but of course Friday night and today I’ve been feeling the effects of the milk of magnesia I took Thursday night. And since I’m expecting to start a bowel prep Sunday late afternoon, I figured I might as well eat light yesterday and today. Maybe it will make things a bit easier Sunday night and Monday morning. But the lack of food has been challenging, in that I feel cold and tired and anxious. I’ve been trying to stay hydrated and to eat enough to not feel woozy, but I’ve literally done nothing today. I desperately want to go back to bed, but if I don’t at least try to stay awake and move around, I’ll never sleep tonight.

I’m also worrying about why I ended up so damn constipated, because that was the absolute worst. I don’t know how people deal with that on a regular basis, for those who have IBD and Chron’s and such. I am afraid that this might continue to happen to me–because I can’t pinpoint WHY it happened this time, my diet has been pretty much the same for months–and I don’t know how I could handle it. On top of all the other stuff in my medical life…

I’m concerned about the actual procedure as well as the prep. They’re going to be putting me under anesthesia, which is scary to me. And of course the test could result in problems if they screw something up. And then the results of the test could bring up issues that will need to be dealt with in some way. All of this is is settling in on me and making me anxious. I talked to T about this stuff at my appointment yesterday, but I was feeling less distressed then than I am now. Of course, I’m a day closer and I’ve had nothing to do today except think. I have tried distracting myself with TV and watching some videos on Youtube, but I’m at a point where it’s not working anymore. I’m also vacillating between feeling hot and cold, for no reason…except maybe the lack of food. Also, it’s 35 degrees out and windy, so the weather isn’t helping, especially when I have to take the dogs out.

To add insult… Hub has some friends over to hang out. When they stopped to eat lunch, Hub told me he “wasn’t feeling right”, which scares me. He didn’t know what it was or why, but it was enough for him to check his blood pressure (which was a bit low for him) and his pulse (which was a little high for him, but he was feeling anxious). About an hour ago he reported in that he was feeling pretty much the same as earlier. So now I’m worrying about me and the prep and the test AND worrying about him.

I just want the test to be over.

 

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Next up in our schedule

The ceremony yesterday went as I expected for the most part. Hub and I–and one of my brothers–stood right with my dad, in case he had an issue during the service. He really shook like a leaf the whole time, so I was grateful that Hub was there right behind me and Dad in case Dad fell or fainted or whatever. Our Rabbi was the only one who spoke, and he said very nice things about Mom…he’s known us for more than 45 years, and he was especially close with my parents for the last twenty or so since my mother served on his temple’s board for many years in several different capacities. In addition to her attending services weekly after my grandfather died. He also read a poem, which I think is kind of a standard poem for funerals, even though this technically wasn’t a funeral.

After the short service was over, I stood at the headstone for a few minutes. While I was there, my brother (the same as above) came back over and sat in one of the chairs that the cemetery provided us. I went over and sat with him (after asking if he wanted to be alone, which he said no), and after a few minutes my father came back, as did my other two brothers and my SIL. We kind of sat there quietly for a few minutes…some of us crying and some of us not.

After about another five minutes, we left Dad at the headstone for a moment and the rest of us moved a distance away. When he joined us, we left and went home to eat lunch with everyone.

The lunch was fine at Dad’s house. We mostly did a buffet style, so it was easy enough to just put stuff out and then congregate at the extended table in the dining room. When everyone but my siblings and SIL left, we hung out for a while until my father ended up falling asleep in his recliner. Then Hub and I went home for the rest of the afternoon. We went back last night to say good-bye to my out-of-town brother and SIL, as they were flying home early this morning.

I don’t feel any differently about my loss. The Rabbi kept telling me that with the passing of this ceremony, maybe my father would find some closure and his depression would lift and he’d be doing better. I don’t think that’s going to be the case for Dad. Mostly because I don’t see Mom’s passing any differently on the other side of the ceremony. It doesn’t change the day-to-day living without her. Not for me, anyway.

Now that we have passed that…milestone?…, I have to move on to things that are waiting for me. One of which is a colonoscopy. Next Monday. I was having some mild stomach issues–that mostly resolved after my PCP appointment–that my primary sent me onward to a gastro doctor. The gastro doctor talked to me about my cancer history, which puts me at higher risk for both breast and colon cancer (which I knew, which was why I went to my PCP right away), and he suggested a colonoscopy. He said it was better safe then sorry, and indicated that if all was well and I didn’t have issues, I could go ten years until my next one. Normally you get a colonoscopy starting at 50, but again because of my history, he wanted to go ahead and do it now. It’s probably nothing major going on, but I don’t want to let anything go, so I’m getting the test.

Sadly, the part that worries me the most is the prep. I hated the surgery prep that I had to do twice in three months for my hysterectomy and then oopharectomy last year. The gastro doctor prescribed a different type of prep–so no gatorade, thankfully–but surgery prep is still really uncomfortable and tiring and anxiety-inducing. The procedure itself will include propofol, so I shouldn’t remember anything. I had that with my other surgeries and they were right, I don’t remember shit after they said “count backwards from 10” and the last number I remember was 9.

I’m also worried about the recovery in the days following. With my physical issues and pain issues, I am sure I’ll be uncomfortable after. I only hope I’ll be recovered in time to go to my in-laws for the holidays.

Coming up after that are appointments for my 18-month follow-up with my oncologist, Le Moo’s yearly “senior” vet visit (and buying lots of dog pills for both dogs), and then my mammo. I also have to get in to get my eyes checked and see the dentist, but I’m saving those for after my mammo.

Life keeps going on…

 

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