The Autoimmune Diaries: Learning Negotiate Life With The Disease

Getting a potentially life-threatening diagnosis has not been much fun, living with the symptoms is also not a lot of laughs. I get absolutely exhausted very easily and sleep a lot, to the point of finding myself falling asleep in the day time in my chair. No amount of sleep relieves the exhaustion. I have severe inflammatory arthritis which is hurting my hands. Playing the guitar is now a real strain, typing is painful, using a mouse almost impossible. I am going to need to use a stick to walk, and to be frank, that makes me very sad indeed. Coughing up blood comes and goes. The pain levels remain somewhere between ‘hell no’ and ‘the fuck this is acceptable’.

Certain things help – the high dose vitamin d seems to help, the mix of lion’s mane, shitake and cordyceps in a powder seems to help as does turmeric. I have been taking CBD which does help me feel more relaxed, and is meant to help inflammation. I am glad I have decided not to continue with the weekly chemotherapy, prednisone and Plaquenil. The round I did was so bad, so rough, so absolutely life destroying that it was not an acceptable way for me to live. The doctor said I would be on the weekly chemo for the rest of my life. That is not any way I want to live. For the most part family and friends have been widely supportive, if a little upset at my choice. I reacted so horribly to the chemo I think that perhaps people now understand. The Boy is on side. Neither of us can imagine this getting worse. We are both holding onto the life raft of each other, hoping beyond hope that I go into some miraculous spontaneous remission.

I have three months of subsidy left. There will be no extension. That does not help the stress levels. The people who do the subsidy do not seem to understand that stress is incredibly unhealthy for me right now. I have a year after 31st August of rent thanks to a friend. I will have to stay in SF where I now have medical insurance. I will not be able to move to northern California like I wanted to. I just hope something wonderful happens so I can stay here forever more with the Boy. It is the one thing I want from what is left of my life.

The Paltry Sum is my absolute joy. I love writing, making the blog look prettier and trying to balance the content. I am quite proud of what I have achieved here. I have a long piece being published in The Radical Notion magazine, which is in both print and online, in a few weeks time. Whilst I am not up to publisher hunting or the stress of trying to get my work noticed right now, I am not giving up. I just need a while to try and work out how to live with this disease and recover from the round of fucking chemo drugs. It was hell. Absolute hell. I already had hair falling out as I washed it. It has calmed down now, but it was more distressing than I thought it would be. The sickness and stomach issues were unbearable. I could do nothing but cry in a corner and shake. No, I do not want to try another kind of chemo drug, I don’t want to try different steroids. The roids made me starving hungry, irritable and jittery, like pure damn speed with an edge of needing to inhale the contents of the food cupboards. No thanks.

The only thing which I have found sad is the fact that the extremely entitled and privileged behavior of a couple of bloggers, one a white dude, the other a white woman, took up any of my time and head space. Yesterday some guy spammed one of my poems with….yes…his own poem. I replied with flowers, no words, just flowers. He then altered the poem and posted it again under my own work. I deleted both of the comments. It was just so disrespectful. The man has his own page to do that on. He then wrote me a shitty angry comment, bitching about how I didn’t move fast enough to approve his comment the first time and then how I dared to delete his poetry from MY FUCKING PAGE. The middle aged victim of his own mental hype was peacocking his entitlement in all bloom. I replied perhaps not as kindly as I should. I do not have the energy to not be upset, and then deleted the whole mess to let my poor little poem sit there unmolested. Why are men under the impression I owe them shit?

The woman was complaining that I liked some of her posts. I read them in the reader. Apparently the views hadn’t shown up on her stats, and she was angry that I had apparently ‘liked without reading’. She was rude, hostile and accusatory. There was no need for it, and again, after the start to the year I have had and my current state of health with a supposedly uncurable disease, I didn’t need her shit. I deleted and tried my best to ignore. Unfollowed and blocked.

The man was adamant that I should allow all comments and approve all comments if I allowed any. The thing is this is my castle and I am the fucking empress of all I survey. I don’t get offended when people don’t approve my comments, I just presume that is not the content they want on their pages, or that it has gone to spam. I do allow respectful comments, and I always welcome private correspondence from people who write to my feedback page. If you write to my feedback page, please check your spam for a reply as I always reply to those messages….well at least the ones which are decent. I will not give anyone a platform to be mean to me or to berate me.

I do not owe anyone a share of the very limited energy I have to work with right now. I don’t owe them any of the moments where the pain is manageable. If anyone, any stranger thinks I do, then they are sadly mistaken. I have had to explain to friends that the old me was always there for them, day or night. The new me has to ask them to carry the shopping, only talk to me after 10am and before 4pm and understand when I am hurting or sleepy. I do not have the stamina I have always had. I used to be like a little hamster on a wheel, forever working and planning and withstanding the slings and arrows of increasingly outrageous fortune…now I am in need of a bit of peace, love and understanding. I also possibly need more than a little encouragement to get a damn cane and use it outside the house. I would like one that looks like a flamingo head, like the Alice in Wonderland mallets. This needs to happen before I have a horrible tumble and end up on the sidewalk or worse.

It is almost impossible to think of myself as disabled. I don’t want the label. I want to be able to carry my own shopping bags and do the laundry without assistance. My hands have such bad bone erosion that I can do neither thing. I can’t do things I used to be able to do. I force myself, make the pain worse and end up laying in bed crying. Anyone who knows me, knows my story, knows my personality knows just how hard that is for me. I am a human dynamo. I am a force of nature. I buzz around being strong and active. I do not collapse into a heap at the slightest provocation. My back is strong. I can carry whatever a man can carry and more. These fingers are nimble, they play across strings and tap out words on keyboards. They do not want to sit gnarled inside arthritis gloves looking at the guitar hoping the flare up stops and spares my fretting paw.

So…if you do venture into the comment section of The Paltry Sum, feel free to chat, but please remember I am not the absolute beast of burden I once was. Perhaps if I had always been treated with respect and kindness and not pushed beyond the boundaries of what my body could handle I would not be so unwell. Domestic violence survivors experience autoimmune disease at higher rates than their non-victimized sisters. Sometimes the mind is stronger than the body. The will is there but the body simply cannot take the punishment, I suppose. I don’t want to hear about stress, or relaxation, I just would appreciate people being kind and gentle with me. No rough-housing, no fighting, no using me as a punchbag because things are fucked up in their lives. I am afraid my boundaries are going to have to be a lot more defined in the time to come, so I have enough left of me to give to the one person that really needs me – my darling teenage Boy.

Thanks as always, for reading. It is generally a huge pleasure. If you see unkindness today, do me a favor, call it out. Be the force for peace and gentleness we need to see in this cruel fucked up world.

Peace and Love

Detroit