(Re-post from 1/24/15)
My name is Irma
I don’t live on the second floor
I did not win any money from a scratch card
I’m just me
Today I am a 42-year-old married Puerto Rican woman. I am the proud mommy of Midnight, my fur baby. I am gainfully employed. I live obscenely far away from my family, in western Washington (referred to—by me—as Wonderland). And logically, I am a Seahawks fan, even though what I know about football would not fill up a thimble.
What does that have to do with this blog? Nothing, really. I’m just introducing myself.
Now this is the main substance of the blog…
I was diagnosed with MS on December 3, 2014…Way to totally FUCK UP my holidays! Since January of 2014 I’d been seeing doctors to figure out what was going on with me. If I had followed instructions, I would have had my diagnosis by summer’s end. But I do everything the hard way. So I went with the wrong medical establishment. They have given me copious amounts of evidence that their patients don’t really matter, so they medicate rather than treat. They referred me to a “specialist” and then cancelled the appointment because she retired—more power to her, by the way—and instructed me to call and let them know if I wanted to see a specialist OUTSIDE their system. HELL YEAH! I called the next day and told them please yes, find me a physician outside of your system. Months passed. I called, I left messages, and when—after months—I finally got through to a person, was told that I had not contacted them, so they closed my referral. Fury does not adequately convey the depth of my rage. But my insurance came through and referred me to THE best medical care in Wonderland, and so I got my diagnosis…finally.
It took me a little over a month to tell most of my family. My husband was with me when I was diagnosed, and he has been very supportive, but I avoided the rest of my family like the plague. I had to call home over the holidays and it was SO very hard not to spill the rotten beans! But I was determined not to fuck up their holidays, too. My misery did not want company. And I especially did NOT want to upset Dad.
The hardest part of the diagnosis for me was not knowing how to tell him. Ever since my mother died it’s been the two of us against the world. There were times when it was the two of us against each other against the world, but the point is that we have always been a team. We have been a dislocated team since I moved to WA in June of 2011—a move that I started to regret around July of 2011. But that’s neither here nor there.
I suppose that it was always a possibility in the back of my head. My mother died of lupus when I was 2 years and about 9 months old. She was 25. Her sister—my favorite aunt—died of MS at age 35. If I am not mistaken, at least two great aunts on my mother’s side of the family died of MS. Family history? Let’s see…ADD, arthritis, osteoporosis, leukemia, Alzheimer’s, Parkinson’s, atherosclerosis, diabetes, liver cancer, lupus and MS…I may have missed something. I mean, there’s all kinds of crap in the pool. I believe it is safe to say it’s more of a cesspool than a gene pool, but there you have it.
I remember my Dad taking me to the doctor to have me checked when I was little, but I really didn’t know what that was about. Then my aunt died when I was 18. I had just gone off to college too. I tried to rationalize it, why and how and how come she wasn’t diagnosed until very shortly before she died. I mean, this was my favorite aunt!
I was angry that she died, and now I am angry that she had to wait so very long to be diagnosed. I can’t help but wonder if she would have lived longer. At the very least she would have known what was happening and would have been able to make informed decisions. I know that the uncertainty had to be a bitch, even though she was a woman of faith, like my grandparents, like my mother.
Since December 3rd I have been monitoring myself. I have an almost detached fascination with which stage of grief I may be experiencing: denial, despair, anger, acceptance. I’ve pretty much been stuck on anger, but not at having developed this condition.
The way I see it, shit happens. The thing is that I am fairly certain that my move to Wonderland has had a lot to do with this whole situation. I keep re-playing the scene in Indiana Jones and the Last Crusade when the knight tells Indy, “He chose wrongly”. Regardless, I made my choice and this is just one of the many consequences.
At the very beginning I cursed the day that I decided to move up here. I also cursed the circumstances that made it possible to move here. AND the fact that I never just chucked it all, grabbed my fur babies, and just went home. Going home meant that I’d failed…again. But I’d be surrounded by family. Now I’s just me, my husband and my little fur baby Midnight (my other fur baby, Smokey, went Home 1/20/2014…did I mention that 2014 was a craptastic year…?)
I have accepted that I have a new companion in my life: MS.
I don’t deny it because I suspect it may have been in my life much longer than I know.
Angry or not, it’s not to blame for the substandard medical care that I have received from “that” medical establishment.
And I am not able to feel despair—even though when I think of my family I do get sad because I know that I’ve given them yet another cause to worry.
The way I see it, I am a Divine Spiritual being. I am not sick, I have a condition that does not define me, quantify or qualify me. When I told one of my co-workers about MS she told me that she has two other friends with MS: one has taken the clinical approach, the other has taken the holistic approach. Both of them have lived with MS for many years and they are thriving; they just have to take better care of themselves than the average person takes.
I have chosen to take the spiritual approach: I am made from God’s Divine Essence. I am made in God’s image. Therefore, I am perfectly healthy. The fact that I now live with this condition means that my faith is being tested—something like Job was tested. I am determined that I will keep the faith in the face of adversity, ANY adversity, with God’s blessing.
This does not mean that I will just pray and not take care of myself. What it does mean is that any choice that I make will be divinely inspired. I will continue to go to my doctor, I will continue to do research, I will continue to follow the instructions of my Pranic Healer and I will continue to listen to the God voice inside me.
Right now that Voice is telling me that I want to explore the possibility of studying Reiki and/or Pranic healing. It’s also telling me that as soon as the weather is better I need to start hiking again; in the meantime Pilates and/or Yoga will do.
I have been told that there are no women’s support groups in my area of Wonderland. My husband wants me to start one. I’m not really interested right now—it is much more stress than I’m equipped to handle at the moment. And so I was inspired to start this blog. It is my approach, my experience, my determination that MS will NOT run my life but rather that she and I will discover a way to live together in harmony. I don’t know much. In fact, I really don’t know anything. I’m no one’s idea of any sort of authority on anything. But if my experience can help anyone out there in any way, big or small, then it is all worth it.
And so I dedicate this blog to the memory of my Titi Chiqui, and to the countless others who have had to live with a condition that changed their lives forever.
Oh yeah, since I told my family I’ve been feeling and looking fabulous. MS has liberated me! Weird, right?