Sometimes, I feel I live in isolation. Yes, I live with my mom and husband and Lola the Destroyer and Kelly the Cutie, but none of my friends visit. I get it, it’s hard to visit someone who has reached rock bottom. They don’t know what to say. They don’t know if I’m having a good day or a bad day. They don’t know if I’m having an angry at the world day or just too tired and sore for company.
Since I can’t drive myself anywhere, even when I do feel like having company, I don’t get it.
However, several readers have reached out to me via email, my blog, social media, just to talk to me. It helps me feel less alone. You have no clue how much I cherish those messages. It’s not about them asking me how I’m doing or justifying my anger or sympathizing with me about the pain, it’s that someone, a random someone that I don’t actually know, is reaching out to have a conversation with me. A conversation, like a friend would. It has made me feel loved and wanted. Because I’ll be honest, I’ve had some really dark days recently. I’m not talking about the night mom caught me counting out pills because of the gabapentin, but dark days because I feel so utterly alone at times.
I hate being asked how I’m doing because there’s no correct response without unloading heaps of emotional baggage. Or I say I’m fine which for those of you without chronic illnesses or pain means anything but fine. So it’s a cop out because I don’t want to discuss the fact that I want to go back in time and change my life for the first time ever and possibly track down those five neurologists who gave me the RSD tests and told me I didn’t have RSD and shove their heads up their asses until they can scratch their butt through their noses.
My hips wouldn’t hurt tonight to the point where I am going to have trouble sleeping if just 1 of those neurologists had extracted their head from their ass and listened to me, really listened to me and said “Hey, you have all the symptoms, the tests aren’t reliable, so we are just going to start treatment for RSD anyway, which is exactly what my pain management doctor said… 22 years too late. Nerve ablation and CRPS do not mix well, but he didn’t have a reason to suspect he was about to ablate nerves that were dealing with CRPS…. So I’ll give him a pass on the head up the ass thing. And he is trying so hard to make up for it…. but even he admitted, I was only his fourth patient with RSD/CRPS ever… and I’m the only one that has ever gone more than a few years without getting a diagnosis and started treatment.
We know so little about the condition that we are struggling to play catch up. There are more questions than answers at most visits. Like is my daily residual pain, the pain the Lyrica isn’t taking care of because I have had it so long? I have definitive proof of organ involvement which used to be considered an advanced stage of it…. So am I too far advanced for treatments to work on me like they work on others? We don’t know. I don’t know. I keep digging for patients and clinical information on patients with undiagnosed, untreated CRPS for more than a decade, but the truth is, most get diagnosed in the first 3 years. So I’m not finding much which is infuriating.
When even the counselor at a special clinic for neurological disorders with an amazing success rate of treating RSD/CRPS says she doesn’t know if they can help me because they have never had a patient go undiagnosed this long… it’s got to be a sign of some sort. To me it’s a flashing Neon sign that I can’t quit fighting, but that I am going to have to learn to advocate for myself on something I don’t understand and that my doctors don’t actually understand.
This isn’t like migraines or PCOS, something I know a lot about from research and experience. It is much easier to advocate for myself with those conditions. This one, I feel like I am wandering around blindfolded all the time. That in itself is stressful.
So those readers just dropping me a line to tell me it gets better and not to give up and that they wish they could do more for me and they hope I get at least a little better, is the highlight of my day. As a matter of fact, I am beginning to feel closer to those random strangers who care about me, than I am my friends and my family.
In three months, only two people have really come and visited me. Beth and Deborah. Beth is my cousin in computer security awesomeness and at 12 years older than me, she is my closest friend and the basis for all my female characters having amazing relationships with at least a few of their first cousins. She provides that template. She liked me when I was an annoying kid and an even more annoying and naive teenager. Deborah used to be my boss. I love her to death and I always appreciate her dropping in for a visit and maybe lunch. She gets it to some degree, the anger, the bitterness, the problems I am having all the time.
For those of you who read my books, you can thank Beth Young, my cousin for them existing. Not only has she always supported me writing, but she’s the one that alerted me to indie publishing being a big thing. For those who work in computer security, the name will probably ring a bell. She’s amazing at what she does. And all her presentations and things that she gets asked to give, I get to listen to before she gives them, which requires me to stay at least a little tech savvy in the security aspect of things… because otherwise, she might as well talk to me in Aramaic. I try not to give her name because I don’t want her professional career associated with my dark writing or my blogging. But I felt it was time to reveal the woman who got me started 5 years ago on this path.
Continue to contact me and send me messages, I love them and appreciate them so much. They help me feel a little less alone.