If you are struggling today (or any day)…reach out for help.
And also, this article is helpful:
I’ve completed recent tests and received all the results.
Neurology tells me my blood work is completely normal, which tested for myasthenia gravis and muscular distrophy. My EMG was “long and thorough” and normal. My first and follow-up physical exams were normal. In our follow-up appointment last night, the doctor finally admitted that he was looking for signs of MS–which he says he didn’t mention prior because he doesn’t like to frighten patients–but found none. After he said that, he said he could suggest a brain MRI, but found no symptoms to support getting one. I told him I’d had a brain MRI five years ago at an ER visit and that they found no signs of any issues (other than a schwannoma that was then “not found” at a follow-up appointment). He said if it was five years ago, and I was 40, that if I had MS, they would have seen signs of it already in the MRI. So that was even more reason to skip the MRI. His final words? Wait it out, see if any other symptoms come up, and go out about my life. He said I could try seeing a rheumatologist, but it seemed like a half-hearted suggestion.
I saw the allergist on Tuesday. He was very nice, listened to everything I had to say and asked questions. He told me up front he didn’t think the fatigue/exhaustion was related to allergies, but said it was worth finding out what kind of allergies I had going on. He didn’t seem to understand my wheat “allergy” and asked a lot of questions…including when I told him that I’d been gluten free for at least twelve years, he said “and you’ve never eaten just a bite of anything? not even cake or cookies?”
Would he say that to someone who had a reaction to peanuts in the past and thought they might have peanut allergies? “Not even a peanut butter cup? Not even half of one?” It was a little frustrating. I’m not sure if it was because I’m fat, or because he didn’t think the “allergy” I had was important enough? Either way, I just said, “No, it makes me feel incredibly horrible and I saw no reason to do that to myself on purpose when I knew what the cause was and it could be avoided.” He accepted that and moved on, but I suspect he didn’t really believe me. He tested me with the skin test, both a needle and a “scratch” test (not at the same time or in the same spot), including tests for wheat, rye, and barley. I had no reaction to any of the needle test–including zippo response on the wheat–but the scratch test (which is more “invasive”) popped “mildly” on dust mites. He did not test me for wheat on the scratch test… However, I will note, that when they did the scratch test version, within five minutes of them doing it, their “histamine” scratch area gave me the same response as what I get to eating wheat. My face started to get red and hot, as did my ear. When we went back so the nurse could read my results on my arm, we told the doctor, and all he said was “interesting.” But for me, it shows me that THAT response IS my histamine response, and points back to the wheat giving me a histamine reaction. In the end, he noted it as an “adverse reaction” to wheat reported by the patient. WhatEVER. I read that both skin and blood tests for allergies are only 60% accurate anyway.
I had my CT scan last Thursday. For the first time, I had terrible stomach issues after drinking the barium, which sucked. I made it to the radiology office, had more stomach issues, then had to stand and talk to the check-in person while she figured out what needed to be done. Then I had to go wait because they wanted to call my doctor’s office to confirm they didn’t REALLY need without contrast as that causes unneeded radiation in my particular case. When they finally got through to the doctor and recalled me to the check-in station, I was then informed that I had to pay for the CT Scan because I hadn’t met my deductible and that I had been notified ahead of time that I would put down a couple of hundred dollars in advance and follow-up the remainder payment later. I had been told no such thing…and I was PISSED and tired and felt like shit and I paid the advance because I needed the test and so what was I supposed to do? The woman doing the CT was SO NICE y’all. She really took care of me, was kind, and helped me work with my impinged shoulder. When we were done, I went back out to where my father was waiting for me in the car because I haven’t been driving myself due to my leg weakness and my imbalance and fatigue. The radiologist said my doctor would have my results by the next afternoon, but I heard nothing. I spent the weekend feeling mild terror, because when I was diagnosed with the cancer, my oncologist actually called me on a Sunday night during dinner. It was like a little bit of PTSD to get through dinner Sunday night, but no phone call came. I finally found the results online at my oncologist’s portal on Tuesday, which said the scan was clean. Oddly, I never got any notification or update directly from the doctor, which was unusual for him.
As it turns out, apparently the radiology center was correct and I had to pay my entire deductible for the scan because I have SHITTY-ASS INSURANCE (this is new insurance for us since May b/c Hub changed jobs). I’ve never had to pay anything for CT’s or x-rays or blood work when I go to a lab/radiology center. And I also see now having inspected the insurance more deeply that they don’t even cover 3D mammograms. And not only do I pay deductibles for all this shit, but I also have to pay 10% co-insurance. Let’s not forget that I have a huge deductible for out-of-network which means they aren’t even close to covering any of my sessions with T. I seriously thought that we had the most obnoxioiusly horrendous insurance until Hub got a job offer from someplace new and we found that they were offering something called an EPO, which would cost us $50 more a month than we’re paying now and offer us waaaaaay less coverage. Apparently EPOs are the “new” thing that are essentially HMOs without needing referrals to see specialists, plus they have higher deductibles and cover fewer things. And insurance companies are suckering people in because they think the EPO is more like a PPO (higher level of coverage and out-of-network coverage) when in fact they are more like HMOs. So insurance companies are yet again screwing customers with lies and deceptions. Woo-hoo. Hub, in fact, turned down the job because of the health insurance and was then told the next day that he was the second “high profile” candidate in recent weeks to turn down positions because of the health insurance.
Primary care doctor
My last appointment with my PCP left me with the suggestion to go see a sleep doctor and/or the infectious disease doctor for chronic fatigue syndrome. She also told me she won’t write a note to the insurance company that indicates I have myofascial pain syndrome without me coming back in for yet another appointment–which will cost me even more money–so that insurance might consider covering some small portion of my trigger point therapy. (Neither would the neurologist, despite the fact that MPS is supposedly a neurology classified syndrome AND I was IN HIS OFFICE when I asked him.)
And so, here I am, in the same place with no plan forward. I am pushing myself to do more to see if I can just IGNORE the symptoms away. My imbalance is bad and I’m struggling to keep myself upright. I DID drive myself to PT on Monday, but it is literally five minutes from my house, on two roads that see minimal traffic. When I talked to my PT person, she said she had a client who was diagnosed with a virus who had horrible fatigue for over a year…but that after that she was fine.
I am burned out on doctors. I don’t know what I’m going to do now. Wake up, step forward, keep going. Try not to let my anxiety get the better of me as much as it has. Accomplish things when I can and celebrate when I do. Rest as needed.
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.
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.
Which did ya want first?
Remember how I said that G-d didn’t want me to exercise? I’m pretty sure that was reiterated to me Tuesday night. How? Well, thanks for asking.
I decided that since I had trouble with the bike, and I was feeling somewhat better after a weekend of rest and antibiotics, that I would try the treadmill instead. I was going to start off easy, like with the bike, and just get on and go for a few minutes. As I’m walking, I feel my plantar faciitis flaring up but I try to ignore it. I knew it would be an issue. My knees, too, but I keep going for just the few minutes I wanted to accomplish. When I’m done, I’m a good girl and I go right into the shower to clean up and I climb into bed for my evening. About twenty minutes later, I’m sitting up in bed with my legs stretched out in front of me. I twist hard and far to the left with just my upper body, bend at the stomach, and reach for the outside of my ankle where it feels like something is biting me. I can’t find anything, so I start to straighten and zzzzzowie!
My stomach to the left of my belly button twists viciously, making it feel like my innards are being grabbed and twisted hard in opposite direction from my outer flesh. It’s, like, the worst pain I think I’ve had in recent (all?) memory. It feels like my stomach or my intestines or something got yanked and twisted around. And it scares the crap out of me. I get out of bed and try to stand, but I can hardly breathe I’m so terrified. And then it’s over in less than two minutes. And I’m standing next to the bed and I don’t know what to do. I know Hub is downstairs, but he’s busy recording a podcast for at least another twenty minutes. So I try to get back into bed carefully and I wait for him to alert me that he’s done. When he does, I ask him immediately to come upstairs and I try to explain what happened.
He looks mildly alarmed (and upset that I didn’t call him right away) and asks me if I want to go to the hospital or what. It’s now after eight p.m. and I know the ER is going to suck, as it always does. Hub suggests the walk-in clinic, which is close to the hospital, so if they can’t help me it’s a short ride to the ER. I call my dad and tell him Hub is going to bring the dogs over in case we get stuck out for hours at the clinic or ER. I don’t really like leaving the dogs over there now that Mom is gone, because Butthead eats stuff in their yard and then pukes it up (either there or here) since her stomach is so sensitive. No matter how many times I tell my dad and brother about it, they don’t seem to take us seriously. Anyway, I get dressed, then meet Hub downstairs and we go out to the car.
The walk-in clinic is not too busy and they basically take me back in about five minutes after checking in. The medical assistant asks what’s going on, then says something to the effect of, “Gee, I hope your intestines didn’t get all twisted up, because that can happen!” in a kind of chipper voice. I wanted to punch him in the throat. Hub says, “Uh, hey, guy, she kind of has anxiety issues, so let’s not just throw random theories out there if you don’t mind.” The medical assistant nodded and smiled, then left the room. From there, despite the lack of patients, it takes over an hour for the doctor to come in to see us. She asks for bloodwork, pee, and an xray. Says she doesn’t know what it is. It doesn’t feel like anything is twisted when she does a physical exam.
I take care of the pee, the phlebotomist comes in to take my blood (Hub leaves the room, ha!), then we sit and wait (me in a gown and my underwear!) to be taken for an xray. The staff seems pretty nice, but slow-as-molasses. It’s already after 10pm, which is their closing time, and we’re basically still waiting for xray. They finally take me in, do the xrays, and we’re back in the exam room while the staff is cleaning and closing up around us. FINALLY the doctor comes in and announces “KIDNEY STONE!”
So she tells me it’s going to be excruciating pain passing a stone, but that it’s already in my ureter and down partway, smallish in size, and hey, it might pass without any pain, but not likely. So you want vicodin or what? I say, in a small voice, I can’t do vicodin as it makes me nauseated and dizzy. She offers me tylenol with codeine instead and I take it. I ask how long to pass the stone and she says “Oh it’ll be gone by morning. Drink a lot…a LOT of water and be prepared to take the pain killers. Seriously, keep them right next to your bed and be ready to pop them.” We wait around another twenty minutes for xray films on cd, which I’m supposed to take to the urologist as soon as possible. We finally leave and get home, and Hub goes to retrieve the dogs. I shuffle to bed and spend the next three hours pounding down bottles of water as fast as I can, hoping to push the stone through. I also go looking for information on kidney stones (I know, it was dumb) and find that those who get stones (“stoners”) will likely continue to get them for the rest of their lives. Of course, my father informs me he had one once, but only one. So maybe I’ll be lucky like that. Or not. Who the hell knows.
I stay up until after 2am, peeing into a strainer they gave me trying to catch the stone so the doctor can have it analyzed and see how to change my diet to not get any more. Peeing into a strainer is awkward, ya’ll. And uncomfortable. And all the while I’m just WAITING for the excruciating pain. It’s coming at some point, and I am terrified. People say it’s the worst pain they’ve ever felt. Worse than labor without pain medication. Brings big strong men to their knees wailing like children. I put the trashcan right next to my bedside because vomiting is highly likely they say. I take off my necklace that I wear all the time so it doesn’t get in the way if I have to bend over to vomit into the can. I leave my hair tied back for the same reason. At about 2:30am, I give up and try to sleep, but lying down makes me feel nauseated (another symptom of stones!), so I prop myself upright and doze off.
At eight a.m. I wake up and call the urology office to make an appointment. They can’t see me until Thursday afternoon (it’s now Wednesday 8am). I ask the person on the phone what to do until then. She says “did they give you medication?” and I said just the pain pills. She asked about the strainer, I said yes. So she says she’ll see us Thursday. Uh, okay, thanks. I spend the entire day in bed, exhausted from the fear and the anxiety and the kidney stone. On and off I’m sure I feel the radiating “flank” pain they were talking about, but it’s mild. My back aches (another symptom!) but it, too, isn’t much worse than normal for me. Hub is taking care of me, making sure I’m still drinking a lot, and making sure I try to eat something. He’s working from home and spends most of the day in the bedroom on his work laptop so I’m not alone.
Still no hellish pain, so I go to sleep sitting up again Wednesday night, but middle of the night I toss the pillows and lie down. I sleep until Hub wakes me to say good bye…he has to be in the office for a few hours before my appointment. I spend most of the morning reading kidney stone stories on reddit, still waiting for the other shoe to drop (the horrendous pain) and wondering why the hell the stone hasn’t passed into my strainer and why I’m not having to pop pain pills like everyone else.
FINALLY we go to the doctor. They make me fill out stuff on a computer thingy even though I filled everything out online at home the night before. They give me a cup and I go pee, for the first time in over 40 hours, I’m not peeing through a strainer. Yay. Then back into the waiting room, where we sat for over 40 minutes until the nurse calls me back. She’s nice, we joke a little, she asks what we’re in for. When I say kidney stone, she cringes and says, “Ugh.” But tells me the doctor will be in shortly, then leaves my xray up on the computer screen for the doctor to see.
Luckily, the doctor comes in shortly thereafter and we go over why I’m there and how I was diagnosed. Then she sits at the computer and looks at the screen and frowns. Then makes a face. She asks again what happened to lead me to the walk-in clinic. She asks again about pain, nausea, backaches, fever, vomiting…none of which I really had in any major way, except for the initial “short” incident. Then she says… “it’s not a stone.”
She says, “Clinically speaking, if you had a stone in your ureter like they thought you did, you’d be on the floor crying and in pain.” And that I’d have been in pain the whole time, basically, even though it might have come and gone in waves. She tells me the spot is a calcification in a pelvic vein called PHLEBOLITHS. I ask her to please repeat that and she does (I still don’t get it but I look it up when I get home…of course), then she says it’s benign, nothing to be concerned about, comes with aging.
What is the meaning of PHLEBOLITHS are noted in pelvis?
A phlebolith is a small local, usually rounded, calcification within a vein. These are very common in the veins of the lower part of the pelvis, and they are generally of no clinical importance. When located in the pelvis they are sometimes difficult to differentiate from kidney stones in the ureters on X-ray.
Good news, no kidney stone. Bad news, I just spent the last 48 hours freaking out over nothing. Oh. My. Gawd.
We still don’t know what the initial pain was from. It was terrifying. She says she wants to get a ct scan to make sure nothing else is going on, just out of an abundance of caution. I tell her I have to get a ct scan for my 1 year post-cancer check next month, and can I combine the two so I don’t have to do two separate scans. She says “sure” and says to check with my gyn oncologist to get what he needs. She prints my referral for the scan and walks me out. She tells me to come back if I start feeling poorly, otherwise she’ll wait to see the scans.
It’s possible the horrifying pain was from a muscle cramp (in a weird fucking place), but I’ve NEVER felt anything like that before in my life. I just don’t know, and won’t know if anything else is going on until after the scan. I’m waiting to hear from my gyn oncologist to see if I can go ahead with the scan now, instead of waiting for the appointment next month.