I am the .1 percent that makes the parabola possible. I am that weirdo.
My doctor saw my blood pressure rising precipitously over a couple of months this fall and decided to put me on a blood pressure medication. I was too tired to argue. I’d hoped to avoid new medication trials, and new doctors, until the end of graduate school, but clearly the emergency lights were flashing, so I took the medication and a referral to a cardiologist.
At first I just felt dizzy and even more tired than usual and kind of nauseous, but my blood pressure was going down (I had to check it at home twice a day). I went to the cardiologist for a work up anyway, like the good obedient girl I am, and suffered through lots of tests, and history taking, and quizzical looks about my long term lack of a diagnosis for such a crazy list of odd and debilitating symptoms. Each test and appointment was physically exhausting, and then the cardiologist decided that I would need to see another pulmonologist, and another rheumatologist, and consider changing this or that medication that could be the culprit for my rising blood pressure (high dose NSAIDs in particular can raise blood pressure and I’ve been on one for years now).
“I’m exhausted just thinking about it.”
I wish I could act like Cricket does at her doctor visits, and bite and scratch and hide under tables, but it doesn’t go over as well with the doctors for humans. So I accepted the needles and the stickers and the probes and the treadmills, with all of the inherent humiliation of being treated like a science experiment, and I smiled and kept my mouth shut so I could get out as quickly as possible, limping down the hallway after one more person told me I seemed fine.
“No one can make me go to the doctor!”
And then, one morning, my lips were swollen to three times their normal size. They were itching and hurting and I thought there must be a secret hive of bees under my pillow, but no, it was an allergic reaction to the blood pressure medication. It’s a well-known reaction, though not well known to me, because doctors think that if they warn me about possible side effects I will decide to have all of them. The doctor took me off the medication and said we’d wait for the reaction to wear off before trying something else, with no advice on how to make the swelling go down, or a time frame for how long this would be going on. I sat in front of the TV with ice on my lips for hours so that I could be moderately presentable for a few hours at my internship, and then I came home and watched my lips blow up again. I took Benadryl at night, and daytime allergy meds during the day, but the swelling kept rising and falling unpredictably.
A week after the original allergic reaction, my lips blew up even bigger than before. We called the pharmacy and they said to go to an urgent care center and get an epi pen, to which I said Nooooooooooo, mostly because I didn’t want to have to get dressed and deal with people. We called the doctor, and he said to take Benadryl four times a day, which meant that I would be mostly unconscious until the allergic reaction wore out. So I did that. It took another week for my lips to resemble their previous selves, though they are still not quite back to normal. For quite a while there, I’m pretty sure people assumed I was getting collagen shots.
No one believes me when I tell them that I tend to have all of the side effects and few of the positive effects of medication, and have a habit of getting paradoxical responses to medication (biological medication meant to resolve psoriasis led to the skin flaying off of my fingers, seriously). No one believes me when I tell them that I am the patient that makes the bell curve possible. But I am that person.
Cricket paid no attention to any of it. She is immune to changes in how I look. She only notices when I change my clothes, because that’s what’s important to her. Pajamas are good, work clothes are evil, sneakers and jeans could be either/or.
“Mommy can’t go anywhere without this.”
I have doctors’ appointments scheduled for the foreseeable future, and most likely more medication trials, and more exhaustion, and more people who think I’m being melodramatic until they realize that I’m just bizarre. None of this is normal. I’m not supposed to be exhausted and in pain all the time. I’m not supposed to have all kinds of weird auto immune reactions and connective tissue disorders. I’m not supposed to need so much pain medication that it leads to even more health problems that bring on even more medications. People my age are supposed to work full-time, raise children, and have social lives, not work their asses off just to make it through part time hours, with no energy left to do the food shopping.
Cricket thinks the problem is that I don’t spend enough time scratching her, and walking her, and if I devoted myself solely to those activities at least one of us would be happy.
“When I’m happy, everyone is happy.”
I feel like I’m holding the parabola in place single handed lately, and there’s no Olympic medal for that. For every one who is safely in the middle of the parabola, with normal reactions to medications, and diseases that can be accurately diagnosed, you’re welcome.
rachelmankowitz 
🥇here, i’ll give you a medal for all of that! On a side note you need to visit that beach more, or lake or whatever that water is. Praying you can stop supporting the bell curve and parabola. Soon.
Thank you! Cricket agrees with you!
One day at a time.
From my experience taking BP meds I’d make sure to eat something along with them. That can alleviate side effects. Also make sure that your potassium level does not dip. Many BP meds leech potassium from the body.
Good luck and good health.
Thank you!
Sorry you’re having such a rough time! My girls vex doctors on a regular basis.
Thank you!
I feel like Cricket in the first picture. I am exhausted just reading this and can’t imagine how you feel. Although as my multiple chemical sensitivity syndrome gets worse with each passing year, I have a glimmer of insight into reactions of things that never were a bother before or having reactions to what I am not sure of! Not quite the same, but frustrating….
I wish you very well on your health journey (and more pajama days!) as you try and figure this all out.
Thank you!
Oh my gosh, Rachel–I can’t like this ’cause I am exasperated by it. There has got to the ‘THE DOCTOR’ who is THE ONE who finds out what is going on. Meds upon meds. It galled me to have to take chemotherapy because of all of the ‘possible side effects’ which scared the hell out of me. Luckily, I had very, very few. But your reaction lasting so long scares me. I’m happy Cricket feels your pain **eye roll**
Ha! Miss Cricket tries to avoid empathy at all costs. I think that, secretly, she feels it all so deeply that it freaks her out.
Hi there fellow 1%er! I make the medication bell curves possible too! The people the phrase “the cure is worse than the disease” was coined for. Sorry to hear you’re over here on this side of the curve too. :-(. Hang in there. Hope you are able to get some answers. I get the frustration with the supposed tos of life and age too. Loads of therapy later I don’t bash my head into them quite so much anymore but they still occasionally rear up. I figure when I’m 50 I’ll finally have things in common with my peers…not only that I’ll have had so many years experience with a revolting body I’ll have seniority! ;-). Lol. Sometimes humor is the only way through I find.
Ha! When I meet eighty year olds with more energy than me, I get grumpy. It happens a lot.
Yes!! I totally get that!
As a side, I’m sure you already have but just in case, your team has ruled out tick borne disease and Mitochondiral disease? I ask as they are often misdiagnosed or not diagnosed and the symptoms you listed including extreme drug responses can be related.
Almost everything has been ruled out, but people tell me that a lot of these diseases don’t show up in your blood until years after they show up as symptoms. Oy.
including fibromyalgia?
PS I had to get someone to spell that word cos it isn’t one I know… Lots of nose-licks to you…
Thank you!
Oy, that sucks 😦
Rachel I am so sorry to read this and think of what you are going through. Chronic illness is an awful thing, especially when you haven’t gotten to the reason for it all. I hope things improve and that someone will figure out what is going on
Thank you!
I also have experienced less than happy reactions to various meds for my various medical issues over the years. I hope that you get through the latest, you could always take advantage of the lip situation and do a duck face selfie. 🙂
Nope. Not gonna do it. uh uh.
Much love to you. May you find at least a few moments of peace in the turmoil. Shalom.
Thank you!
More love in your life will cure all of this stuff.
I have no words. Thank you.
Oh My! I am praying for you. Why does he have you at the rheumatologist? I asked because i believe yoy just told me why my blood pressure is high the past couple of years. My blood pressure was always between 80 to 90 over 60. And now it is always Extremely high. I take 12 advil or tylenol at one time twice a day. I never told my doctors or anyone else. Please Please keep us informed . Take care of yourself♥️
I’m so sorry! Maybe you need another dog? Cricket’s wonderful, but she’s just a little thing. She can’t do it all alone!
That was a joke, btw. A feeble one, I know. Really I wanted to say I was sorry, but then I felt more words were necessary, so I wrote them and hit send, and then I thought, “Oh good grief, she’s going to think I’m an idiot.” Come to think of it, you might be right. Okay … done here… 🙂
I thought it was a great idea!
Ha! Miss Cricket keeps looking at Goldendoodles in the neighborhood. I just don’t know how they’d feel about apartment living.
Well … I always favor rescue. Maybe there’s a little older dog that would love to be safe and cozy in your apartment. If you’re not comfortable with a dog from the shelter, take a look at Petfinder.com and Adoptapet.com … they’ll tell you what’s available from rescue organizations in your area.
So sorry to hear you have all these health problems, and that the medical profession can’t provide better solutions. I wondered if you’d tried alternative approaches – such as classical homeopathy, which can be very helpful and at least does no harm.
I’ve tried some things in that direction, but it gets expensive. Maybe in the future.
Some .01 per center wins the lotto every week. Why couldn’t you be the outlier on that parabola? Feel better!
Thank you!
Hang in there, Rachel. I have gone through a similar thing with my migraines. Sometimes it gets better. That is my motto. Sometimes it gets better.
I’ll hold on to that. Thank you!
Wow Rachel, Such a hard time for you! Is there anything that helps you feel better when you take it or do it? Have you talked with a nutritionist? Maybe a major change in diet could help…I’m on a low carb diet which has helped with an autoimmune disorder as well as lowering my A1C so I don’t need medications. But I have never had allergies so I know that is a whole other issue. Apple cider vinegar is used for lots of health benefits…
I’ve tried different diets and haven’t found the right balance yet, but it’s certainly worth another go.
I understand completely. Medications seem to bring more side effects than relief for me, too. Hang in there, the good days will come!
I hope so. Thank you!
Thank you!!!
I’m so sorry. I hope Cricket can keep your spirits up (and the swelling down).
She always tries her best. Thank you!
It sounds as though you are having a rough time of it currently, I hope it smooths out soon. I take BP meds too with probably no side effects so it’s possible to find the right meds that work for individuals, and I’m sure the doctors will find the appropriate combination.
It’s depressing to have to go through the hoops to discover what works though, poor you.
Get better very soon.
Thank you!
I don’t tolerate medications well, either, and avoid them if it’s at all possible. I really hope you can get your medical issues diagnosed and effectively treated. Good luck!
Thank you!
The allergic reaction you had must have been so scary! It sounds it. You know, Cricket might be onto something– more time scratching her and walking her could be mutually beneficial. It might help lower your blood pressure and make Cricket happy in the process. I think it’s worth a try! 🙂
Cricket is loving you from afar right now!
🙂
I’m really sorry you are going through all that. I pray you will find a healthy solution. My wife almost died from a reaction to a blood pressure pill. Then, when they changed the medication, she never felt ‘right’ taking it. She never quite felt ‘herself’. She also felt anxious all the time and fearful. Over time, she lost weight and her blood pressure went down naturally and got off the medication simply because she permanently changed the foods she ate.
I’m so sorry for what she went through!
wonderful offering
doggie the medicine
need 🙂
Cricket is right — more belly rubs make everything better!
Cricket is always right!
Take care! Get better, with or without those meds. When in doubt, get second opinion, doctors are not always right. Trust your instinct, you are your best doctor.
Thank you!
All best wishes to both you and Cricket and get well soon.
Thank you!
Sorry for your exhaustion. May God bless you with healing x
Thank you!
Sorry that you’re not in a good place right now. Wishing you all the best.
Thank you!
During all the years I was an EMT, I encountered many people suffering allergies and drug reactions, some living for decades with un-diagnosed illnesses. Many told me they would have been happier if it had a ‘label’. Others felt trapped in the ‘system’; that merry-go-round of referral, treatment, new reaction- next referral.
I came to the conclusion that if you are not living with such rare problems, then it is impossible to understand the debilitating effects of them. In my own case, I have had years of skin irritation problems, which necessitate taking anti-histamines on a daily basis. They can make me tired at times, but are preferable to the steroid creams I was given in the past.
Now I am older, I see that most doctors just expect me to ‘live with it’, and they no longer make any attempt to actually find a cure.
Best wishes, Pete.
That is so validating! Thank you!
Get well soon!
Thank you!
sounds terrible, I’m so sorry! I hope they get it figured out and taken care of soon!
Thank you!
I hear you, Rachel. Dearly hope you feel better soon!
Thank you!
Thinking of you and sympathise as Hubby suffers side effects from meds yet the doc seems not to care. Once this latest trio of body chaos is sorted, he’s jumping ship.
Hope you can get things sorted PDQ too. 🙂
Thank you and I’m sending my best to you and your husband too.
Bless you. Thanks 🙂
Once the doctors get their hooks in you, they never let go.
They haven’t tried hooks yet, but I’m sure that’s coming soon.
Cricket knows best!
Jokes apart, I hope you get better soon 🙂
Thank you!
My sympathies. I’m another upholder of the parabola, so dear you’re not doing that single handedly. My diabetes does not conform to the ‘normal’ way it should behave, and I’ve mostly given up trying to explain it to the doctors. My thoughts are this: Doctors don’t know everything, they know specifics about a piece of the picture usually. The whole picture continues to elude them because they’re taught not to think outside the box and when a variant on the spectrum occurs, they don’t know what to do. So they go to trial and error and probably write a few papers for The Lancet about those of us who are weirdos. We do all the hard work though, living through side effects that aren’t supposed to happen, reactions to medications that are the opposite of what they expect them to do, and sometimes dying because medicine hasn’t caught up with our variants on a theme. Yes, this is a soapbox. I’ve dealt with my own foray off the path of ‘normal’ for almost 38 years now. And they still haven’t figured me out. But I have hope for you! Perhaps this time they’ll decide to try something a bit different and think outside the box. Well I hope so anyway.
So far, doctors have dealt with my weirdness by ignoring it, or telling me I’m making it all up to annoy them. One doctor said to me, you just love to be a challenge, and I said, No, I really don’t.
Rachel, So sorry you have to go through all this. I hope it helps to spend as much time as possible with Cricket (for both of you).
Thank you!
So sorry to hear you are going through this and it seems you are very sensitive to the ingredients in standard medications. As already suggested, natural approaches combined with exercise such as qi gong may help, as well as plenty of dog walks in the fresh air and ‘forest bathing’ :o) xxx
Thank you!
Poor you. That sounds awful. I hope your doctors can get to the bottom of it and find a way of keeping you feeling well x
Thank you!
I am horrified by this post and feel so awful for you…possibly the reason your new dog hasn’t appeared yet is that you need to feel better first…I will be sending good health wishes your way from the South where some of our typical remedies for poor health include sipping mint juleps on a veranda while gossiping about your neighbors and/or taking to your bed with the vapors. I heartily recommend both. Bless your heart…literally.
Sounds good to me. Thank you!
Oh wow. I can so relate to adverse reaction to medication that only a few percent of people have. When you are the sample population- it is little comfort. Like the chronic acid reflux I developed with medication treating symptoms that were due to a food allergy. Or like Dexter who can eat everything, but Comet developed gastric issues eating the same canned food. I didn’t give him medication, just eased his digestion back to normal with jewish penicillin – chicken and chicken broth.
Cricket wants you to be her new doctor!
I hit like only because it is so well written. I can’t imagine having to take medicine to stop the reaction to medicine that is to stop the reaction to other medicine. What madness! May your bell curve collapse.
Thank you!
My Mom is one of the 0.1% too. I have had to try to put her back together after taking simple pills that the doctor insist never have side effects. Just out of curiosity, are you affected by electromagnetic fields? I have been surprised at how unusual and wide ranging the symptoms of this can be. If you live in a building with a bank of smart meters by your unit, this can be particularly debilitating if you are sensitive. I pray for you each week and hope to hear happy news (maybe in the form of a new companion?).
Thank you!
Rachel, I suffer from ME. There are many thousands of us worldwide who would identify with everything you’re saying so you may not be quite the 1% you feel like! The exact symptoms each of us experience vary an awful lot, but I’d say I recognise many of yours. I won’t go into much more detail but wondered if you’d approached your quest for medical help from a slightly different angle – my experience with mainstream medical professionals is that if they’ve no understanding of ME (and fibromyalgia) they are completely at sea, and worse they’ll put you through unnecessary processes and often show little respect. (As you describe). There are doctors who do know what ME is about (and some people are beginning to think now that it may be a collection of different misunderstood illnesses rather than one) but ME has an inflammatory neurological base which explains a huge range of weird symptoms and reactions. There are things that help, but they’re often not drugs, and there’s no one single universal treatment. Poorly functioning lymphatic drainage can be one thing that can be helped and there’s a special osteopathic thing called the Perrin treatment (I read your dog osteopathy post as well. Goodness, I know what it’s like to be mauled about by this practitioner and that, and end up discovering a lot of things that have nothing to do with getting better!)
I do wish you well in every way, and Cricket. I’m a huge fan. Deborah.
Thank you!
Dear Rachel, so sorry to hear you are having a tough time, I pray you find an answer soon to bring health back to you,sending healing vibes and a big hug your way xxx
Thank you!
I am so sorry, Rachel. How scary. Hopefully you’ll soon be off the parabola. Sending peaceful energy your way.
Thank you!
I hated to ‘like’ this post, because I don’t like what you’re dealing with at all, at all… I hope the day comes when you find a doctor that you like and trust and can talk to without reservation… We SHOULD feel like our care providers are on our team, not the opposition!
Thank you!
The US health care system just boggles the mind. In Canada you would have ONE family practice doctor who knows all about your reactions to meds. This doc would be in charge of your blood pressure (US trained docs are psycho about BP meds), your skin, your auto immune things, everything. They would handle your cardiac stuff and everything else and its doubtful you would be subjected to this much testing. You don’t just go to a cardiologist or any specialist in Canada. Its mind boggling how little family practice docs down here know! And I can talk about this with knowledge as my husband is a family practitioner (the vet training between countries is similar, sadly.) Not trying to knock our American colleagues, I just think you need one person in charge who says yay or nay with your meds and health care, someone who knows all the ins & outs of your quirky responses to meds! I hope they figure things out or at least give you a break from testing!
The compartmentalized nature of American medicine seems to be getting worse rather than better, and the logic of it escapes me. Except for the money. It’s a really good way to make money.