It has been two years since my brush with near lupus death. It has been more than two years since I really started going downhill with the hair loss, the fatigue, the debilitating joint pains, the rashes, the fevers, the vomiting, the unexplained vision changes, the urine retention, the migraines, the numbness in my extremities and the countless other tiny symptoms that were happening at the time that everyone seemed to brush off as figments of my imagination or “just stress”.
Things have changed a lot in the last two years. Changed for the better. I guess when you are starting at zero you really have nowhere to go but up. But for all the improvements that have been made there are also the things that remain. The things that may never be fully better. The parts of myself that I have to mourn and accept even though I’m not quite ready to give up hope yet.
Things that are better.
I can walk.
Yep. I can walk. I can walk mostly without a cane. I still have days when I choose to use it because even though I can walk, I can’t walk comfortably. I do my best to grin and bear it. I know that the walking looks pretty normal on most days. If I never said anything no one would know the difference other than I’m a bit slower than most. But it hurts like hell to walk. The nerve damage hasn’t been getting better for at least the last year. It seems to have plateaued. On great days I’ve been able to manage 10,000 steps. On bad days I can’t manage even a few without wanting to cry.
My lupus is under control.
I still do my bloodwork every month. It has been great. It has been normal!
I look great.
Well at least that is what I am told by everyone. But even I feel like I am looking good after all that weight gain and hair loss and everything else.
Things that are the same / or not getting better.
I’m tired every single second of every single day. I wake up exhausted. I do my best to sleep 9 hours a night, but probably end up at about 7-8. I wake up and feel like I have a hangover every day. I struggle to stay awake during the day. I try to take a nap in the afternoon if I leave work in time. The fatigue makes it hard for me to concentrate. I feel like my head is in a giant cloud most of the time.
I’m in constant pain.
The pain only stops when I am resting. Medications don’t make it better. Marijuana doesn’t make it better. It is a constant irritation that is exacerbated by walking. Even sitting too long becomes painful.
I can’t pee.
Still can’t pee. Will probably never be able to pee regularly again. But I get bladder botox to deal with the neurogenic bladder issue so at least I don’t feel like I have to pee every 20 minutes which is a huge relief.
I’m still on drugs.
Still on the Cellcept and prednisone. Doesn’t look like I will get off of those anytime soon. Not great.
Things that have changed that I wouldn’t give back.
I appreciate the little things.
Waking up early. A nice cup of tea. A random email from an old friend. A snuggle with the kittens. Everyday things seem a little bit more special.
I’m less inclined to be angry.
Don’t get me wrong. I still get angry. I just don’t get wrapped up in all the bullshit that I used to.
I admit when I am failing or hurting or need help.
I’ve always been too strong for my own good. I was never willing to accept help. I was never willing to listen to anyone. I hope that I am better at asking for help or letting people know when I am hurting these days.
I love more freely.
I care and love more openly than I ever have before in my life. I cry. A lot. I cry to my friends who love me and reassure me.
Seems like that list is a lot of physical things that continue to linger, but I guess the tradeoff is having grown emotionally in the past few years. Here is to more healing in the next years.