I want to be able to drive but I can’t because I’ve lost too much of my eyesight. I had to stop driving in 2010 so I have to rely on a family member or an Uber or Lyft. It seems like the only places that I go these days are to see my retina specialist, glaucoma specialist, neurologist, psychiatrist, psychologist, physical therapist, ocularist, endocrinologist, dermatologist, acupuncturist, CT scans, ultrasounds, blood tests, MRIs, mammograms, dentist, pharmacy, more blood tests… I mean seriously folks, come on! 

While I’m on a roll, I need to complain a little bit more.  On top of the seemingly endless medical appointments, I have a ridiculously long list of supplements and prescription medications that I take. I  swallow 47 pills a day. One of my daily supplements is a sticky patch that I place on my stomach or the back of my arm. I have steroid eyedrops and glaucoma eyedrops, ointment for my prosthetic eye because it dries out, hormone creams and nasal sprays, a plethora of droppers filled with homeopathic concoctions—15 drops of this and 15 drops of that, 30 drops of this and 30 drops of that.  Some things are once a day, some things are twice a day and some things are three times a day. Last but not least, I need to do my light therapy and my physical therapy exercises daily as well. All the while living with debilitating fatigue, sight loss, muscle numbness, weakness and stiffness, joint pain, brain fog, nerve pain, balance issues, flu-like symptoms, anxiety and depression.

I recently had an MS relapse which caused the right side of my face, neck, shoulder, arm and hand to feel like someone injected Novocaine into them. My arm flops around like it has its own agenda and my hand has forgotten how to pick up objects, write with a pen and type with a keyboard. I am going to have a tunneled catheter placed in my jugular vein so I can have plasmapheresis for a few months. When that is done, I will have IVIG infusions(that last nine hours) every four weeks, hoping this will stop the active demyelination and give me the use of my arm and hand back. Fan-fucking-tastic. When shit like this happens, I really have to focus on my long list of things I’m grateful for—otherwise, I don’t know… I just don’t know.

I have been dealing with all of this health related bullshit for 37 years. Let’s face it, that is a looooong time to stay hopeful and look on the bright side. As I’m writing this, I’m feeling anger and, as far as I’m concerned, hope can kiss my ass.

I am feeling so frustrated. I don’t want to go to physical therapy because it’s just one more thing. One. More. Thing. One more thing I have to overcome. One more thing I have to push(and push and push) through to keep my body functioning. One more fucking thing!  It’s been a never-ending hamster wheel of one thing after another.  I get up, I go and I do because if I don’t, there will be consequences.  And those consequences will be more pain and I have enough of that already, thank you very much.

I’m going through another bout of grief, so it’s denial, it’s anger, it’s sadness, it’s anxiety, it’s panic and, you know, it’s a lot. I have my spiritual life and I have that knowingness that there is a great Love guiding my life, so that part of me is at peace observing, always reminding me that I can see through the eyes of grace or through the eyes of pain. I’m constantly vacillating between the two. It’s a rollercoaster of emotions, but hey, at least I’m allowing myself to feel emotions—this has not always been the case.  

I am aware that I’m going through another healing crisis and my life is a process.  I’m learning to practice respecting the process and honoring the one going through the process(me), and by honoring the one going through the process, I’m allowing myself and my inner child the space to feel those feelings and to nurture her through them.  I do not make her feel like she’s doing something wrong or she’s being a burden or bothering people, because it’s not her fault. 

My family has to deal with their own emotions around what I’m going through. I can’t be in charge of their feelings. I can’t be fully in my experience if even a little bit of me is in another person‘s experience. I need to stay in my own experience and honor the precious, sweet innocent part of me that deserves to be treated with kindness, gentleness and love.  This is easier said than done, but I keep trying.