Actually, I am calling July this.
Everyone else mentioning it is calling it “disability pride month” – and I just can’t go there.
I totally get it – and agree with the concepts. The idea that there is no reason to be ashamed of our physical or mental limitations, our scars, our limps, our devices – the wheelchairs, the catheters, the ostomies, the pumps, the walkers, the continuous monitors, the central lines. . .
Or the we shouldn’t apologize for needing a handicapped spot – even if we get nasty looks from those who don’t think we “look” disabled enough.
Or that our value isn’t related to our ability to work or not work.
Or that we shouldn’t be ashamed if we are unable to participate in all the things that everyone else is doing.
Or that we can still be beautiful, even if our illness has changed our appearance.
I totally understand the meaning of disability pride month. It still just feels. . . odd. . . to me to use that wording.
So, let’s talk about disability awareness month instead.
a particularly puny week for me.
Of course, in true 2020 style, the day I had planned to write on this topic falls at the end of a week when I have been much more sickly than usual even. As a result, I actually almost wrote about something else – but then I decided perhaps this IS the appropriate time to talk about disability awareness for me.
I have written often about my usual health challenges with my rheumatoid arthritis and complex regional pain syndrome as well as celiac disease and other autoimmune diagnosis. Since last July (2019), I have also battled several rounds of osteomyelitis in both feet and then in my left SI joint due to stress fractures from long term prednisone therapy and having contracted MRSA related to my total immune suppression. I’ve been septic three times from those infections and have taken months and months of strong IV antibiotics to treat all of this.
Finally, last week, my course of IV antibiotics was finished and my PICC line was removed. I was so thankful.
Then I began developing a NASTY sinus infection (of course).
(I have chronic sinusitis and have been dealing with it since I was 18 and my ENT would like to eventually do sinus surgery – but I can’t seem to ever be well enough to consider it.)
Well, as my body does EVERYTHING to the extreme, when the chronic infection becomes worse and is acute, I get horrible headaches, gnarly sinus drainage, nosebleeds that can last for half an hour, body aches, worse fatigue than normal even, and just general flu-like symptoms. That sucks, of course, but that isn’t the worst of it.
The two bigger issues it has brought on are that it has required YET ANOTHER course of antibiotics – which my body is already reacting to with nausea and fatigue (so yay for eight more days!) – and it exacerbates many of my autoimmune symptoms and can trigger or significantly worsen a flare.
Right now, I’m experiencing:
- Increased joint pain, particularly in the joints where my RA likes to flare – hands, feet, hips, knees.
- The stabbing pains that come and go throughout my body when my CRPS is acting up.
- The full body involuntary “jerks” that I also experience when I’m ill and my CRPS is really active. I hadn’t had them for awhile and really hoped they were gone for good. Alas, no. 😦
- The facial headache pain triggers TMJ pain – which brings on a pain called trigeminal neuralgia that I first saw with my last CRPS flare. It is awful.
- Finally, all of this brings on fear of a full CRPS flare or spread. They are so terrible that I just can’t help it.
So, that has been my past few days.
Autoimmune disease is a beast, y’all.
what you might see if you were with me.
Every day is different with autoimmune disease, especially with someone like me who has multiple diseases and allergies – and new things always developing it seems.
Some things you might notice if you were with me for a day?
- Though I hardly ever get out right now – no immune system and a county under Very High Risk COVID-19 warning don’t pair well together – when I do, I always park in a handicapped space. Even if I am doing well enough to walk into a store with my cane, I am totally heat intolerant – even short exposures make me terribly ill – and have to get inside as quickly as possible.Thus, even if I were to look “well” enough to park elsewhere, I’m not.
- Sometimes I have to use my Smartchair (Mervin), when I just can’t get around. Though I am incredibly thankful to have him, using him was a MAJOR adjustment for me. Not only needing him at 41, but also the looks of pity people often give me. Ugh. (Don’t do that, y’all. Just don’t.)
- On better days, sometimes I can use my cane (Ellie) to walk into a store and then drive a cart around inside. Those days, I wish I hadn’t fought using a cane for so long. Though needing her was an adjustment too, she really gave me so much more comfort and reassurance while I’m walking. I have balance issues and she makes a huge difference in my fall risk as well as helping my hip pain and helping me get up steps. (and she’s a fabulous leopard print too ❤ )
- Some days, at home, it’s all I can do to go from my bed to the bathroom in our bedroom. It just depends on how things are with my feet, knees and hips. Those days, which are fairly regular, I just read, write, and carry on. What else can we do?
- In addition to my celiac disease, which makes it necessary to avoid all gluten, I have developed several other food allergies. This is not uncommon among people with autoimmune disease. I am allergic to eggs, soy, and, most recently, dairy. If I can’t eat food you’ve prepared – or am being choosy about restaurants in which to eat out – I’m not being difficult. Being given the wrong foods can be absolute HELL for me – and not just immediately. Being glutened can trigger a flare and all the nightmares that come with it.
- My feet have stress fractures in literally every bone and CRPS has gone through all three stages in both of them. So they are weird. They don’t have normal feeling, they swell like crazy when the spirit moves them. . . The only shoes that work for me that are truly comfortable are Birks. This works out well since I am a leftover hippie. However, if I appear at your wedding in Birks or in 30 degree weather in Birks and socks a la Bob Weir or your memaw, just carry on. . . 😉
- I take WELL over 50 pills a day – plus I have injections and patches and ointments and nasal sprays. . . If it seems like I am always taking meds, it’s because I am. Just overlook. I don’t enjoy it either.
- I am well aware that my face is puffy AND that long-term pred therapy and insulin have caused me to gain weight. I don’t need to be told that I look different or anything like that. It’s upsetting. Other spoonies express the same thoughts. Trust us, we already know.
- I’m still ME. Despite any and all health challenges, I’m still very much myself. I still love to spend time wth my family and friends, love on my Henry, go on adventures when it’s possible, read, write, go to church, listen to music, thrift, visit the mother ships (the Target and the TJ Maxx 🙂 ), talk about current issues, go to shows. . . I’m still here. ❤
managing all of this.
As I say so often – because it is so true – I wouldn’t be able to get through this without my people. They not only take care of me, they also keep me going when it is really rough.
Just today, I woke up from one of my long, getting over the plague sleeps to these beautiful flowers from my amazing husband.
And, when my blood sugar bottomed because I hadn’t really had any protein during the day, my sweet Sara Bug whipped up a batch of her fabulous spaghetti – my favorite – in the middle of the night.
I had calls and texts from my parents and my bestie – feel better & I love you, friend ❤ – today.
I always have the world’s best weenie dog by my side to snuggle with.
I am blessed with so many friends who check in and message and pray.
I also cling to my faith and trust that God will see me through and use this somehow too.
So, though I doubt I’ll ever be able to celebrate Disability Pride Month, I do hope I can bring some awareness and understanding.
I am tremendously blessed to have my people who love and care for me so well.
Many are not so fortunate.
As you go about your daily activities, please keep your eyes open for those around you who might need an extra hand. Somebody might be counting on you to be their person too.
Be well, everybody.
Take care of yourselves and each other.
Grace and Blessings.