Tag Archives: frustration

Lyme Diaries – Hot Showers & Tummy Aches

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I started having symptoms of what I thought was anaplasmosis on Tuesday, June 24th: my half birthday, no less. Turns out it was anaplasmosis and Lyme disease, and I have had a stomachache since that day, every day, without fail. It is becoming frustrating and demoralizing. A monthlong stomachache!

In good news, I followed my doctor’s advice and started to use heat to help with pain and have been taking very, very hot showers. Almost immediately they stop the nerve pain, as if my body gets distracted by the heat from the pain and all the attention goes to it observing, “wow it is hot and that feels good!”.

I woke up at 4am this morning with a stomachache. I also have edema, as of two days ago, which either means the bacteria is causing it, or one of the medicines I am on is causing it. I tried and failed to not take any pain medicine last night, even though I have to say that the pain is much better than it has been.

This is a journey, and a difficult one at that. No one seems to know much and every time I ask they all say, “everyone is different?” and while logically, biologically, I understand that, it is a very annoying thing to say to someone who is just looking for answers as to why her stomach has hurt every day for a month, and why now her legs are swelling so much that squatting down is uncomfortable and feels like I am wearing a pair of tight pants.

My doctor also told me to keep a positive attitude so here goes:

  1. Super thankful for Cody cooking dinner last night. We made polish sausage and cabbage and I wonder if the cabbage has made my tummy upset. But it was so delicious and our first cabbage from the garden!
  2. Super thankful for my devoted doggo, Oscar. He never leaves my side.
  3. Super thankful for my cute and sweet and not stressful job. I could not teach and go through this at the same time, no way.
  4. Maine summer and the garden, even though I can’t go in the sun.
  5. Flowers! Stars! Winds of change! All of the natural processes that go on around me while I wonder when this will feel better.

It is now 5:58 and I am wondering if it is worth it to try to go back to bed, but my stomach says no. I hope you’re well out there and helping me ideate a tiny bazooka for all the ticks.

Lyme Diaries – Weird Thoughts

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This is my fourth week of antibiotics for Lyme disease. It appears that I have chronic Lyme and may have had an infection years ago, or months ago, or who knows, that is now flaring up with all sorts of weird symptoms.

One of the big ones is appetite related. My stomach hurts almost all the time, and so I don’t want to eat. Not wanting to eat oversimplifies the feeling; I think my body is telling me not to eat because I feel so sick. But if I tell it no, and eat food, I feel better.

Here we are in the mind-fuck part of Lyme disease: it is like it is trying to trick you into doing things that aren’t good for you. I know that other diseases and conditions can do this, so it isn’t a huge surprise but also — it is? How can this be caused by a tiny spirochete bacteria named Borellia bugdorferi?

Right now I am drinking water with a splash of bitters in it. It is late on a summer night. My back hurts alot but I am hoping a hot shower will help (learned that trick last night). I am trying to not take anti-nausea medicine as it really messes up my digestion, which is already messed up thanks to antibiotics (doxycycline). My solution? Keep taking the Doxy and start to carve small, life-sized charms of Doxy pills. You gotta laugh.

My husband and I are having issues as he can’t do anything about my illness and so is becoming irritated at its longevity. I keep telling him that it bothers me (probably) more than him, but … I just don’t have any energy for anyone even myself right now, and for that, I feel very bad. I feel that it is a major accomplishment that I get an outfit together (with jewelry!), get some food together and get to work. I also feel accomplished that I am able to fake it at work every day, sort of; I am able to maintain and get things done. I hate to feel this selfish, but when he gets frustrated with it, I either get frustrated back or just get so tired I just kind of shut down.

The mind fuck of it all. What IS Lyme disease? No one knows. So many people have it. How is that possible. When might there be a vaccine? When did life get so complicated? Is our country changing irrevocably? I lost another friend to pancreatic cancer last week; why isn’t there a screening tool for it when so many people die of it so young? This life is so mysterious and makes less sense the more time I hang out here.

Sending love to you – I hope you are all right. Hang in there, baby.

I love this sweet song – I am not a super Taylor Swift fan (don’t tell anyone!), but this one really struck me today.

Night Pains

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It is 4:20am and I am writing because I have been woken up with pain, again; this has happened the last three nights. I am tired, and I am sad, and I miss days without pain like this. And the thing is, I am used to chronic pain. I have had it since I was 18 and was first diagnosed with the autoimmune disease that makes illnesses like Lyme and anaplasmosis and shingles so much worse for me: agammaglobulinemia. The constant, chronic pain that I have learned to live with is in my hips and my hands. But this, this is different. I don’t know exactly how to describe it save it is a burning feeling emanating from the bones of my ribcage, lower back, and abdomen, as if there is something slow burning there, like charcoal. It wakes me up and begs for relief. I took one tylenol and two iibuprofen per instructions, and now I wait, as I took 2 gabapentin before I went to sleep.

The doctor’s assistant told me on Friday the pain could be the pain of the bacterial “die off” which I find gross and rude (on the part of the bacteria). My tummy is distended and I have had a stomach ache now everyday for three weeks. I can’t put any pressure on my stomach at all without feeling a lot of overwhelming pain. I feel terrible about this as it means it is hard to hold my husband’s body at night, and hard for him to hold mine, without causing discomfort. Pain is alienating on top of being sad and frustrating.

This is a short entry, written in the early hours of a Sunday morning. I do not know what to do. I surrender to this, but it does me no good as the surrender is simply because I am lost to this pain and lost to a real solution to it. During the day, I can manage it with medication, but at night, I try to sleep. For the first three weeks, it was like my body turned off at night and so did the pain, but no more. I hope we are reaching the end of this, if not, I am worried that we will have to do something different; more medication, different medication, more impactful drugs than what I want to do.

I said this the other day and still think it today; I am so thankful for modern medicine as if we were in the olden days without antibiotics and pain medication. I would be lost. But then I read that the first case of anaplasmosis was diagnosed in 1993 and wasn’t even fully identified til 2003, so it didn’t even exist in the olden days, thank god. I just googled Lyme disease and it has only been around since 1975 so, big whoop, these diseases are of the modern age! I am sure though there are lots of diseases that are hundreds of years old and are miserable without medication.

I am hoping the meds kick in so I can go back to sleep. This is a sad moment, but hopefully it is just a moment that will pass and I will remember it but not dwell on it.

A Mid-Year Reflection

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My plan to write here,  even just a little bit, each day has fallen apart. My biggest explanation as to why is being sheerly overwhelmed by all that has happened. The United States has the most cases of any country in the world, and the highest number of deaths. Our President, who was woefully inadequate before the pandemic, now has shrouded the White House in miles of fencing and barricades to keep the protestors away from him. Protestors by the thousands are peacefully marching, now, after a week of fire and destruction brought on by three incidences of racist police brutality in a row. We are all expected to “go back to normal” despite the knowledge that the pandemic still boils in our communities, and there is a 19% unemployment rate with little being done to help those people who lost their jobs; these are the same people whose lives are impacted most by police brutality and lower-quality schools that lead to lower-paying jobs.

In other words, it is a hot mess express out there.

I don’t have very many words for it all right now, except that it seems so incredibly sad, but also incredibly predictable, that this would happen in the United States after 40 years of destabilizing social programs and a destructive and addictive dependency on capital development over anything else. We have been out of school since mid-March, and all I hope is that we go back in August. No one seems to have a plan or even a specific idea about how to manage this transition, and my explanation is that schools don’t make money so they are not a priority. Isn’t that it?

My garden is beautiful and I have to look at that as an analogy for these frightening times. I have tended my garden well during the pandemic: literally and figuratively. I have spoken to friends, worked on creative projects, continued with graduate school, begun to work on school work for the fall, and stepped outside each day to plant living things. These are the only spaces of control that I have.

I often wonder about how people felt during the last pandemic. There was no information overload. Perhaps they only knew what was happening in their town or on their street. Perhaps they knew much more? I feel that I know nothing, except that my government has lost the last shreds of authority, accountability and usefulness that they had in early 2020.

There is an election in November. Even NPR is talking about the possibility of the President not accepting the results. What happens then? What will happen this week?

Gods help us.

Date: 8 June 2020

Worldwide Cases: 7,049,649

US Cases: 1,946,144

Worldwide Deaths: 409,821

US Deaths: 116,929

Mortality Rate (Worldwide): 5.81%

Mortality Rate (USA): 6.00%