we were supposed to close on our house today. that’s been pushed to friday now. the entire first floor had to be restained and refinished.
tomorrow was supposed to be my final chemotherapy session. now i have no idea what the end of my treatment looks like. maybe two more cycles. maybe imrt.
i’m on prednisone indefinitely to combat the bleomycin toxicity damage. yesterday, my pulmonologist added bactrim three times a week to fight off any atypical pneumonias that steroid users are susceptible to.
the steroids have also swollen me to the size of a freshly cracked tube of cinnamon rolls. poppin’ fresh would be proud. none of my clothes fit. i’m not trying to be all, “oh, woe is me, i’m so fat,” i’m just sayin’… i can’t open the closet and just get dressed anymore.) it really makes for a bad start to the day. and spending money on fat clothes is really not something i’m amped up for.
my feet are blistered and peeling. my fingernails are falling off. my teeth are getting really sensitive. my joints hurt. i’m tired all the time. i’m overly emotional and can be generally unpleasant far too much of the time. half of my hair is growing back, but it looks muppety and i plan to shave it off. i am so beautiful.
nugget has a cold. she’s been seen three times for it (mostly for my benefit) and is really just fine, but it makes me sad to see her sick, especially when there’s little i can do to comfort her. at least she’s learning to cover her mouth when she coughs.
we drove up to northern virginia yesterday for a bunch of doctor appointments. the plan was for nugget and me to go back to my parents’ last night, but i couldn’t make the drive. so, we’ll try again this afternoon. wish us luck!
hopefully all will go smoothly at closing on friday and slowly but surely we’ll start making our way into our new home. i know my treatment will be sorted out eventually, but it’s difficult to see the supposed, and most anticipated, end come and go.
Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.
This is her story:
Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.
Any other time I go to the doctor? Well… That’s an entirely different story all together.
Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain. I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.
Imagine my dismay to realize that it was going to start all over again.
I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. ) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.
The day before Valentine’s Day, I decided to add passing out to the mix.
After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.
I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)
Oh! But wait! It seems my body decided to throw another curve ball into the mix!
During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.
To me, it was easier to deal with the judgment of being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.
Except in June, I found out that I managed to get myself knocked up.
I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.
I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.
And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)
I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.
So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.
I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part. While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?
Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that.
Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?
I have a wonderful life. Great husband, great family, and I love my job…it’s not perfect, but it’s good.
Except…
For flippin’ migraines.
Growing up I got one in a blue moon and really, they were bad, but I wasn’t stressed out about them.
I’d just get one and think, “Oh, this sucks. I have a migraine.” And I’d take some medicine, drink some really strong instant tea and it would go away. Later, I’d get them and take a cocktail of Benadryl and ibuprofen to go to sleep and it wouldn’t be a big deal.
Five years ago, I woke up one morning, laid in bed for a little bit with my husband, got up and started to get ready to leave town for my grandmother’s funeral. I bent over to pick something up off the floor, stood up and next thing I know I hear my husband yelling “Jennifer! Jennifer! Open your eyes and look at me! Jennifer!” What the heck? Why? Then I realize I’m in a really weird position.
One doesn’t normally find herself sitting in her laundry basket.
Then I realize I’m still naked. Then I realize I need to throw up. Then I realize the only other time I’ve seen my husband so scared was when I passed out from a fever a couple years before. And can I say that since my step-son’s best friend at the time was one of the EMTs working, I’m really happy my husband didn’t call 911 so he could find me naked in my laundry basket? What does it say about me that I’m more worried about that than the fact that I was unconscious and naked in my laundry basket?
So that set off a round of doctors, emergency rooms, MRIs, CT scans, and heart monitors. And daily migraines. Yep, I said daily migraines. My husband’s thought is that I hit my head against the wall when I passed out, and maybe it knocked something haywire even though my head didn’t hurt and no damage has been found. The best news out of all of this is that I actually have a brain. I have pictures. It’s there. Contrary to some people’s belief I do have more than just empty space between my ears.
So I went 6 months having daily migraines. I was taking a cocktail of medications to manage the pain, because these are not normally the type that are aided by Imitrex or things like that. I had to take an anti-inflammatory, a pain medication, muscle relaxer, and my dear old friend Benadryl to get rid of the pain. And I needed to sleep. I was working in a place that had a lot of chemicals, so after 6 months of working half days we decided that it was best if I found a new job. So I did. And my migraines have dialed down to a couple a week.
I have two kinds of migraines, which is part of my problem.
I have the classic which is where you get the aura and have squiggly lines in your vision and it feels like someone is jabbing an icepick in your brain. Those are rare for me. Then I have my normal ones where it feels like the angel of migraines came with his boxing gloves to punch me in the left eye. It’s always the left side. And either I wake up with it or suddenly I realize, “Oh, hey, I have a migraine”. There’s no warning like the others. And with my normal ones there are three levels of pain. “Oh, hey, my head hurts. Ok.” is the mildest. Then there are the ones like today, “Crap my head hurts, but I can function so here I am, but leave me alone”. And then the worst are the “Oh freakin’ hell, somebody kill me now!”
Recently, I’ve been introduced to a new circle of hell – the DOUBLE migraine. Really?
Because the others weren’t bad enough? This is where I get one aura, my head starts to hurt really bad, then after that aura goes away I get another one about 20 minutes later. Seriously!
The pain from that is excruciating and double.
Along with my own personal pain and agony that goes along with these migraines, I have to deal with other people. Most of my migraines are like today. I look fine. I’m at work. I’m functioning. I’m typing a flippin’ blog for crying out loud. If you’re paying attention, I look like I’m a little off. But to the casual observer I look fine. Something may come up and I’ll say “Oh, I’ve got a migraine.”
But when they’re bad enough I need to call in to work, load up on drugs and sleep all day, I get “but you could work the other day”. Yeah, out of sheer force of will and there was too much I had to do. And then there’s my husband. He’s the only person on the planet I wish would get just one migraine. Just one. I don’t get them just to ruin his plans. I don’t get them because I just want to miss a day of work. I don’t get them to get out of cleaning. There are the granddaughters. God bless them. I hate it the most for them. There are times it is impossible for us to be in the same house when I have a migraine. And unfortunately, they’ve learned to ask “Do you have a headache?” when they come over and something seems off. They still need to be able to be little girls, so I try to tell whoever is responsible for them that they don’t have to be quiet and if they want to come give me a hug it is really okay. But most of all, it’s the people that want to offer me solutions. Like I haven’t tried everything already. And 5 1/2 years later, I have a pretty good idea what causes them, but you just can’t avoid the weather. Although, I kinda like my husband’s ex-mother-in-law’s idea…medicinal marijuana. I really hate being perceived as a whiny-a$$ baby who complains all the time, so I don’t share with many people.
So there’s my migraine rant. I hate them and they hate me. I hate that it inconveniences others.
I had a moment of realization this morning. I don’t KNOW that I have psoriatic arthritis yet. I’m clinging to this diagnosis, yet I haven’t seen my xrays. I haven’t seen the blood tests. Who knows what they say? I know something’s wrong. I know it’s not all in my head. But there are so many things it might be.
Let’s lay out, 100% what we know about me.
1) I have psoriasis. My elbows and feet are flaky, itchy, painful, masses of skin problems. I’ve had psoriasis for as long as I can remember. FOREVER.
2) My hands hurt. My hands hurt every morning when I wake up. It takes an hour of slowly moving my fingers to be able to get up and brush my teeth and hair. To get dressed. Sometimes I can’t handle buttons or zippers at all. Some days my husband has to open doors for me – not because he’s a gentleman, but because I can’t turn the knob on my own. Sad but true: I didn’t quit smoking to be healthier. Or to save money. I quit because I couldn’t consistently use a lighter or matches and holding something so narrow hurt my joints.
3) I have hyper-mobility syndrome. Every joint in my body extends past the normal set-point. This is partially why no one believes how much I hurt… my joints are still moving in the normal range of motion! But, doctor, they used to move MORE. Apparently that’s not enough.
What I know, 100%, is that I hurt. Sometimes a little. Sometimes a lot. Movement is good – to a point. Resting too long makes my joints stiff. I’m finding myself more frequently getting feverish without being sick. In general, my temperature is higher than it used to be. The shapes of my joints are changing. The color of my skin changes with the level of inflammation. When I hurt, my hands swell to twice their size or worse. My fingers look disgusting.
So, what’s wrong with me Doc?
I’m clinging to psoriatic arthritis because even though it’s life-long pain, there are treatments. It could get better. At the very least, it could stop getting worse. That’s all I’m asking for now – that today’s pain is the worst it is going to get.
Lyme Disease treatment options are all over the place – no one can seem to stick to any standard.
This is her frustration:
I am sitting at the ER. I have had a headache since Thursday with pain behind my eyes. It feels like my skull is trying to break through my eyes and nose and ears. I wish it were sinus related. But it’s not.
The reason I’m at the ER is two-fold. I want to make sure that I don’t have spinal fluid building up in my head. The second reason is more complicated. I was hoping maybe I could switch back to being treated here by my neurologist, who is covered by insurance. My Lyme doctor isn’t. She wanted to treat me with IV antibiotics. My Lyme doc thinks that orals are the first line treatment.
You see, Lyme disease is rife with controversy. Does it exist in the numbers that the International Lyme Disease Association says? Are the current tests sensitive enough for diagnosis? Does Lyme seroconvert in the blood like other infectious diseases? Is it easily treatable? Will three weeks (and maybe six weeks) of oral doxycycline treat all forms of Lyme, even if it’s late stage, which mine is? Will four weeks of IV rocephin treat neurologic Lyme?
I have Lyme, but my diagnosis is still suspect.
When I saw my neurologist in September, part of my Lyme test was positive, the other negative. When I went back for blood work,the negative part was now positive. But the positive was negative. Confused? My neurologist wasn’t convinced that I have active Lyme disease though I am symptomatic, and my tests prove that I have been exposed to Lyme (and my first test indicated active Lyme).
So I went to Seattle. I tried Levaquin, but it can cause joint inflammation, so any sign of joint pain and they stop treatment (joint pain is common in Lyme). Then I was put on Rifampin, which I have stayed on for months. It treats a secondary infection that is thought to occur often with Lyme disease. It resolved the shooting electric pains in my arms. I was put on Amoxicillin, which I’ve been on for months as well. Then I tried Minocycline for Lyme. It caused me to walk sideways. I already was dizzy. I didn’t need to have sea-sick vertigo as well. Then I tried Biaxin. I broke out in hives. I tried Doxy. It caused heartburn that radiated to the base of my skull. But the doxy DID work. I switched to Zithromax, and all of my symptoms returned. So I’m back on Doxy and taking Nexium to combat the heartburn. The problem is I’m not getting better like I did before.
What’s next? IV drugs. Insurance will pay for one month. It often takes more. A PICC line. Daily infusion. I was hoping to get treated from someone locally. But it looks like the doctors here don’t want to touch this. When I get home, I will call my doctor in Seattle and wait. And if this doesn’t work, I am flying to the Northeast where this stuff is treated often and where it costs a lot of money to see the top docs.
I am ready to be healthy. Six months with little improvement is just not acceptable to me.
