Forged

In the fall of 2013, my health took a serious turn from shitty but manageable to completely out of control. For the next several months, I spent most of the time in bed. I was having classic POTS symptoms but I didn’t know anything about POTS yet. I was having excruciating bone pain and was puking every day. It was the first that my worst symptom was pain and not exhaustion.

Within the next six months, I became so sick that I was largely confined to my apartment. I worked but mostly from home. I put on a massive amount of weight from high doses. I had a PICC line placed and started doing infusion and IV meds at home. I went low histamine and lost a ton of foods that I was never able to add back in. I had hives all over my back, neck and chest. I had anaphylaxis a number of times.

I have always kept journals. I periodically go back and read old journals. In the fall of 2013, I was miserably sick. But my entries didn’t focus on the symptoms or the pain. They focused on the fear and despair. My fear had become its own world, superimposed upon this one. I would lay awake at night, alone in the dark, trying to find the edges of that place.

Part of the fear was confusion. I was used to arguing with insurance companies but now I was arguing over things I didn’t fully understand. Arranging nursing and line care, identifying pharmacies for compounded and IV meds, scheduling procedures with doctors who didn’t know me and thought my special requirements were ridiculous and unnecessary. I was constantly having to insist that, I was in fact, really sick.

Perpetually having to relive your worst health experiences for the benefit of an unforgiving audience is scarring. The frustration, uncertainty, and fear made for a dark emotional landscape.

In the last 18 months, I have largely improved. I had much more stamina, POTS symptoms were much less severe, anaphylaxis was much less frequent, food reactions were not as bad. I could exercise again and lost the weight I gained on steroids.

I have been having worsened GI symptoms/abdominal pain as a result of the herniation. The last few months have been phenomenally stressful and that has made things much, much worse. At the end of the summer, I started having severe GI pain anytime I ate anything. I thought I was reacting because of the heat. Then it wasn’t as hot anymore and I was having severe GI pain and night sweats and blistering hives and strange bruising. I thought it was from the change of seasons.

I am now having severe bone pain in my pelvis and both legs to the extent that it is painful to walk. I am having low blood pressure and getting tachy when I stand, even though I use IV fluids to stabilize POTS. I am still having severe GI pain anytime I eat. I continue to lose weight despite the mathematic certainty against this, given my caloric and fat intake and recent level of activity. I wake up in a fog with a buzzing in my head that it seems I have had before.

I had the same symptoms in the fall of 2013, the sentinel announcing the onset of a health nightmare. It’s happening again.

I am frustrated and upset about this development for obvious reasons. I’m scared but not scared like I was in the fall of 2013. I have a port, ready access to IV meds and fluids, weekly nursing care, line care, excellent insurance, a pain management plan, and a team of doctors that treated me in 2013 and has learned a lot since then. I am much, more experienced in managing this disease and fluent in the academic aspects of mast cells and mast cell disease. I understand how to deal with this and have the appropriate infrastructure to do so.

I saw a friend this weekend and filled her in on my ongoing spiral. “You seem to be handling it,” she remarked in her Masters in Counseling verbiage. “You don’t seem scared.” She’s right. I am exasperated and so unbelievably tired of living in this body. But I’m not scared like I was before.

I was strong before but not like I am now. So much of this has become routine. I’m going to be sick whether I’m mad about it or not. More than that, so many of the things that scare other people bring me comfort. My port is like a security blanket. All these meds have bought me a measure of independence. Even using an epipen is rote. I’m not happy about needing these things but I accept them.

Adversity forges you, hammering you over and over in a relentless rain of blows. You either shatter or you strong enough to withstand it. The metal splinters or a blade forms. You disappear or you become a weapon. You succumb or you learn to fight.

I am not responding to emails, messages or comments, or answering questions. Some of the blog posts will be made private. The problem is not that I’m not asking for help or need help from other people; right now, that would actually make a lot more work for me. I have limited energy and have to work within certain constraints because of my job.

Part of this decision is because my body needs a lot of rest and quiet. Part of this is because I anticipate my health issues worsening before they improve. Part of this is because of the stress of being accessible online and the anxiety I have after this summer. I am just so unbelievably weary. I am tired of having to defend myself. I am required to report accusations of misconduct, baseless or not, to my employer. I am exhausted in the very core of my being.

Hope everyone is coping with Shocktober and has a happy Halloween. Take care.