How I Spent 2018

Sideways Teal
A selfie where I am lying down and the picture is oriented sideways. I am wearing a teal shirt which compliments my green eyes

2018 began with an e-mail letting me know that the results of my Lyme test were in my patient portal.

I wouldn’t have my follow-up appointment with my doctor for another few weeks to let me know what to do about it, but there the results were. Positive. I hadn’t been mentally prepared for it, not really, even though my personal medical intuition-informed by literal years of reading about anything and everything related to my symptoms-had been honed to a sharp blade and I was rarely wrong anymore. I sought out a Lyme Literate doctor because by September of 2017 I was pretty damn sure. I wanted very much to be wrong. No one really believes in Lyme as a chronic illness. Tests are not the most accurate. The treatment is often not covered by insurance and treatment is physically hard on your body. The science is not 100% there…yet. And if I gave myself over to a treatment that amounted to nothing more than potentially hazardous snake oil? My credibility as the expert on my own body and competent caretaker of it would be shot through with doubt. I was not sure I would trust myself again if this went wrong, nor was I sure that other people would or could or should trust me on matters of my own illness. That was excruciating.

My husband and I talked about it a great deal. We talked with other people who had personally gone through diagnosis and treatment and had good results. I had a doctor who was insistent from the start that we would never overwhelm my body with more medication or supplements than I could take, that this was never going to be a miracle cure-I would always still have Lyme, it would just be an infection that was appropriately kept in check, that I had final say over what course of treatment I consented to-and that she would never pressure me into consenting to something I was wary of, that the goal was to get the infection (actually infections, as I have Babesia as well) in check and get me off of antibiotics and supplements sooner rather than later.

Do you know what it means for you to have faith in a doctor when so many failed to help you? There was only one doctor who was outrightly belligerent to me when I desperately needed help. Most of my overwhelming disappointment with doctors was that I would have a life-altering symptom, we would run the standard tests to see what the matter was, and when I walked away I would have a few negative tests results and a shrug. No information about how to control my symptoms. No clues as to what went wrong in the first place. Just shrugs. Doctors only spend every waking second trying to solve a mysterious diagnosis on TV shows. Most of my doctors were well-meaning but overworked, experts in difficult and widely known diseases I didn’t have that occupied most of their research time, and specialists who are dealing with different body symptoms who rarely consider that pelvic pain and hypoglycemia and hives and plantar fasciitis could possibly belong to the same systemic problem. I never gave myself over to unquestioning faith in my doctor, but I began to let myself have some faith in her.

I started treatment in late January 2018. I want to say I tapered off of the majority of my supplements and medicines by mid-March. The whole of February I spent the first half of every day in a haze, a fog so thick I mostly ate and sat and slept. I would take the kids to school, then take my medicine, then deal with the fog. By early afternoon it would lift. I would get the kids, complete the few tasks we needed completed to keep our world running and rest again. I recently looked back at pictures where I didn’t hide behind make-up. I looked grey. My face and lips and eyes looked like the color was drained away. I wore my softest clothes and binge-watched a lot of TV, something I’ve never really done being normally just a bit too restless for that. When I stopped the bulk of the serious medication, I kept on with maintenance supplements for a while. Many of my most problematic symptoms had faded away. Slowly I began working back up to my normal life (and my oldest broke an ankle just a few weeks after I stopped the bigger part of my treatment, so normal life wasn’t normal until about June). I still looked grey in early May. By one each afternoon I would fall into a dead sleep.

By July I realized that I passed out nearly in a dead faint after eating gluten at lunch, shaking with sudden chills, unable to stand upright. There is more to the story than that, but I’ve mostly told that story in an earlier blog post. Since August my youngest and I have been gluten-free. And my immune system seemed to come back on line. It sent my body for a loop. Suddenly immune-regulating medication I was on was dosed too high, and hormone replacement therapy I was on was dosed too high and I had skull-crushing headache verging on migraines for weeks at a time until I finally got the appropriate doses figured out just these last couple of weeks.

And I feel…good.

More often than not, I feel good.

I had given up on that ever being possible.

One thing that most helped me realize that I could trust that going into treatment was going to be the right thing to do? It’s that I had done a lot of work over the last several years to work through the grief of being sick and I had come to accept that my life-my smaller, less capable life-was absolutely still a valuable one. I really had accepted that feeling good might never be a possibility again, and I had made some amount of peace with that. But my heart-my heart was struggling to beat as quickly as it should have been. My heart was slowing down to dangerous levels. I had decided both that my disabled ill life was worth living and that it was in danger that needed to be addressed.

Lyme can infect your heart.

I wasn’t looking for a miracle cure, one that would let me climb Everest once treatment was done. I wasn’t in a desperate place grasping at straws, clinging to gold-plated hollow promises that I could be “fixed”.

I was looking to stay alive, because I loved the life I had in the middle of illness.

It was in that place where a leap of faith was possible and as measured as a leap can be. I knew what cardiologist I was going to approach if my heart rate didn’t recover or got even a little bit worse. I had an EKG through the local hospital that told me that my heart was strong but slow for some (to them) unknown reason. Now, about a year later, my heart rate stays within normal ranges for a person of my activity level. My heart is now beating in a way that makes it more likely that I’ll survive the next year, and the next.

This has been my 2018. I’ve done a million other things in the meantime, but from beginning to end it has been a year where I listened, figuratively and literally, to my heart. There were risks where I gained rewards I literally didn’t think were possible a year ago. There were risks that could have made this coming year a one of recovery from very bad failure. This isn’t prescriptive. If you don’t need to jump, maybe don’t? That leap can be very dangerous. Whatever your leap of faith is about, if you’re thinking about that leap, don’t go about it willy-nilly. Don’t jump with your eyes closed. Weigh everything. Research, examine your mental state, your motives, don’t jump out of a plane without checking your equipment five hundred times. Have contingency plans, and be cautious. But, if you’ve done all those things and you still find that the risk-whatever that may be- is worth it, I certainly can’t tell you to always play it perfectly safe. I didn’t. For once that worked out better than I dared hope.

Happy 2019 Everyone

 

Love,

Kristin

When Those Bastards Tried to Repeal the Affordable Care Act in May, 2017

author pic Heidi
Image Description: me looking at the camera, my long hair down, wearing my hand-made, blue “I am a pre-existing condition” t-shirt

Hello everyone,

This weekend is an interesting (but not bad at all) one for me.

In the midst of celebrating Mother’s Day, I am attending a Die-In to protest the AHCA at a local representative’s office (Not mine, my representative is an outstanding advocate for us-the representative for the  neighboring suburbs is not).

I announced I would probably leave the house by 10:15 am to which my kids asked, “Where are you going?”

Without looking up from his phone my husband deadpanned, “To die.”

Luckily my kids are, by the ages of eight and ten, used to being teased by my husband and always ask me, “No really, what’s going on?”

I briefly explained that a lot of people voted against my ability to have affordable health care in the future, that people will die without treatment and so we were symbolically going to pretend to be dead for a few minutes in front of a congressman’s office, to demonstrate what he voted for.

Along those lines, and in a less brief format, today also I have an essay up. It details a little bit of my struggles with chronic illness, my reaction to the recent vote and what it will mean for my family if it becomes law.

So, in a little bit I’m off to pretend to be a corpse. Then I’m going to visit with my parents and my kids in a park filled with lilac bushes, give my mom her customized #Iamapreexistingcondition t-shirt (I haven’t made my mom something with markers in a looooong time, I felt like a kid again) and enjoy both having a wonderful mother and being a mom to some pretty awesome kids.

Who are probably going to play Minecraft while I lie in a ditch somewhere.

Take care!

Kristin

The following essay first appeared on the website, Progressives of Kane County. Hence the somewhat longer introduction to who I am…

I want to briefly introduce myself. My name is Kristin Wagner. I was born and raised in the Chicago suburbs, and after living in Tennessee and Texas returned back home to raise my two boys. I am a wife and mother, a former high school English teacher and currently a writer. I volunteer at our school and take my kids to the pool in the summer and sit outside of piano lessons making up grocery lists.

I am also a chronically ill person. Though I am somewhat shy about using the term, I do identify as disabled. I have Hashimoto’s Thyroidistis, fibromyalgia, chronic urticaria with dermatographism, a dairy sensitivity, hypoglycemia, allergies, premature ovarian failure, and sometimes depression. I walk a tightrope each day to manage the symptoms of each illness without causing more problems with another illness.

The process of getting to a place, a decade after I began being actively sick, to where I can get by involved neurologists, gastroenterologists, endocrinologists, rheumatologists, allergists, gynecologists. It involved trips to the ER with unexplained pain, ultrasounds, x-rays, an MRI, an EEG, an EKG, a colonoscopy, steroid shots, and blood tests measuring almost anything that can be measured in a blood sample.

I am forever grateful that when I had horrible symptoms that could have pointed to cancer (ovarian and colon) that my doctors never hesitated for a moment to check. Those scans were negative. That when my blood sugar kept dropping for no known reason, my doctors tested me for diabetes and insulin-producing tumors. Those tests were negative. That when I couldn’t feel temperature we immediately checked for Multiple Sclerosis. Again negative. When I had such bad chest pain that my doctor thought I may have been having a heart attack, I was able to get myself checked out without worry that I couldn’t afford it.

I have been lucky. I have been in huge amounts of pain, but I am lucky. The entire time I have been ill we have had insurance. I have been afraid of what my illnesses have cost us in co-pays and premiums and prescriptions, but I have never gone without care. I have never had to ignore a pain that could be cancer or a degenerative disease because I couldn’t go to a doctor. I have never had to go without medicine I need because it was prohibitively expensive. I have been able to track down what is really going on when I feel too sick to move. And because I have been able to take care of my health, I can live my life as well as I am able knowing I will never really be “healthy”.

Thursday, May 4th 2017, the day that the majority of the Republican members of the House of Representatives voted for the AHCA, was devastating. All I could do was stare at my phone as the votes rolled in, stunned into silence that people who should be my voice, who should care about my life, were so happily cutting it in half. I cried because for the very first time in my life I was looking into the faces of men who rejoiced in the idea of me dying. I suppose I’m lucky it took me so long in life before I had that feeling wash over me. That day 217 members of my government decided that my life, my happiness, my ability to be as good of a mother and person as I could be, was too expensive. That my life wasn’t worth the money it takes to keep me going.

They voted to eliminate protections for people with pre-existing conditions. If my husband lost his job and we couldn’t afford insurance for a little over two months, every single illness I have on record might be used against us as excuses to raise our premiums to exorbitant levels, effectively pricing us out of insurance. The birth of my two sons, by C-section each time, might even be used against us. My illnesses and necessary surgeries could conceivably bankrupt us.

They voted to add annual and lifetime caps on coverage, which were both banned by the ACA. At thirty-eight, I very well may have used up what I was “allowed” to use up, potentially leaving me without continuing care for the illnesses I already have and any without any ability to deal with other diseases. Most likely more will come up. Having one autoimmune disease (for me, Hashimoto’s Thyroiditis) often means others come along (like Premature Ovarian Failure) and more might pop up later (like Rheumatoid Arthritis, or Lupus). People will die from lack of care, from lack of preventative measures, from lack of diagnostic tests.

I am not being hyperbolic. The 217 Members of Congress who voted for the AHCA voted to kill constituents, to shorten their lives, because keeping people alive and healthy is expensive. There are definitely people in the world who subscribe to the idea of eugenics, who have no problem letting disabled and ill people die because they, according to this horrific philosophy, don’t contribute economically as much as totally healthy citizens do. May 4th the Republican Party voted, gleefully, to cull the sick and the poor out of our country for the financial gain of the already wealthy and the insurance companies.

If this unconscionable bill passes the Senate, I do not know what I will do to try to stay physically healthy. I will most likely try to get by on the bare minimum of care, so that I don’t exceed my annual or lifetime caps, assuming that if I am going to live as long as I can more diseases will find me. My quality of life will be diminished as I spend more time in pain or exhaustion than I needed to, because treatment that exists will no longer be accessible. We will be abundantly cautious with our money, taking no risks. We’ll have my husband stay with his progressive company, saving as much as we can to forestall an inevitable bankruptcy. Maybe I will hide what I’ve been through, leaving no paper trail to suggest I am less healthy than I appear on the outside. And yet, I am comparatively lucky. We still have money to save, my husband still has a job at a good company, the illnesses I already have are (for the most part) not degenerative. There are people who will make it only a few years, a few months, a few days, without continuous care.

Even if this bill dies as soon as it passes through the Senate doors, I do know what I will do to stay more psychologically healthy. I will do whatever my sick body will let me do to rid our government of every single Representative who, by voting yes on the AHCA that day, demonstrated the lack of human decency we associate with unmitigated, unredeemable monsters.

I’m lucky I still have a voice to help me do just that.

We are Americans. We should be taking care of each other, our sick, our poor, all of our people. We have the capability to do just that. A government’s job is to take care of the people under its care, to protect them from enemies within and without. We should protect all of our citizens, and when it comes to military spending we seem to think no cost is too high, no weapon too expensive. And yet… an estimated 43,000 Americans will die prematurely annually without access to affordable healthcare, the casualties equivalent to having a terrorist attack of the scale of 9/11 every single month.

Those 43,000 lives have worth. My life has worth. I am ill, I am disabled, and I am worth keeping alive.

Even if our Republican representatives do not think so.

Happy Birthday To Me!

 

I took a walk today, for my thirty-eighth birthday, since it was beautiful out and all the flowering trees are in bloom.

It dawned on me that this, today, this walk, was a good example of what life is like with chronic illnesses, a good illustration that may clear up some misconceptions.

I am very allergic to spring pollen. Right now my chest feels tight and congested, my throat gummed up and my body generally achy. I could stay inside with all the windows shut-that would make my physical suffering considerably better. Some days, when life is stressful, I choose to do so because dealing with feeling miserable all the time (even with medications) can be hard. My life indoors is still full and interesting. There are still movies and music and books and food and cuddling and crafts and games that I can enjoy locked away from the outside world.

Some days I want to expend the effort to be in the middle of of these beautiful things that make my life demonstrably harder. Literally, these gorgeous temporary blooms make my skin itch and my eyes water and my head hurt. But it is worth it, sometimes. It is worth the extra discomfort to get to enjoy something that is outside of my comfortable realm. I just celebrated Easter and a beautiful wedding on the same principle-the discomfort of knowing I might feel rough from overexertion was worth it to see family and to celebrate with them. But I did end up feeling very rough.

Just because I am happy, and happily occupied, doesn’t that I am suddenly healthy and well. Almost 100 percent of the time I feel at least a little ill, and the majority of the time I feel sick (maybe nauseous, maybe weak, maybe in pain, maybe just congested and stuffed up). I look well because the markers we use to figure out if someone is sick-a green pallor, a disheveled appearance, a frown, an inability to do the activities we want to do – are often absent when I am doing something I enjoy. So people mistakenly think I’m healthy.

And just because I feel sick in the middle of a happy occasion doesn’t mean I am automatically sad. When generally healthy people feel sick, they (for the most part) stop everything. Normal life is put on hold, and when you have the flu or a cold you give yourself permission to just feel bad. When you feel better you go back to normal activities. There is a separation between the two worlds-one is full of rest and recovery and feeling both emotionally and physically down, the other is full of activity and fun and feeling emotionally and physically up. For chronically ill people there is no clean division. I can be physically very unwell but still emotionally very happy. I can be physically well and emotionally unwell. Sometimes I do get upset about my limitations when something I want is outside of my reach. Sometimes I push my limitations as far as they will stretch to bring something I want in reach and pay the price later. But my life isn’t a stunted or limited one.

As long as I have agency over what I do, I get to decide for myself what I am or am not capable of at any given time, I have a good life. Not an easy life, no, but a good one. This is unthinkable to people sometimes, that its possible to have a good life in the middle of illness or disability. It leads to misunderstandings. I hope I can clear some of that up.

I was brilliantly happy to take a walk through my neighborhood today, snapping pictures of all the flowers, breathing in the scent of lilacs.

I also feel like I have a brick sitting on my chest, and I could use some ibuprofen and caffeine to combat this headache I’m getting. Or am I feeling worse because I ignored my hypoglycemia guidelines and had a cinnamon roll for breakfast and need some protein? Is it allergies or fibromyalgia making my neck hurt?

No matter, I have a birthday/therapuetically-necessary-every-six-to-eight-weeks massage scheduled for tomorrow. And a dairy-free dessert to make for myself for later.