I told myself a while back that I would blog on Tuesdays, Mondays are recovery from the weekend…not that one of my days is much different than another, and the rest of the week is devoted to daily painting. So today is Tuesday. I’m sitting here pondering what to write about, which I was supposed to do yesterday, but the truth is that yesterday was so frustrating for me that I’m having a difficult time wading through the leftover angst, knowing all too well that rumination is unhealthy, and letting it go. You know those pesky persistent thoughts where you can think of something else but then your mind travels straight back down that road? That’s where I am. So I guess maybe I should write about it, release it, and let it go. Hopefully.
For those of you who have a chronic illness, firstly I’m sorry, and secondly you probably understand the difficulties in finding good care. For those of you who are relatively healthy and haven’t had illness touch your family, you simply wouldn’t believe what some of us experience when searching for medical care. It’s heartbreaking, it’s challenging, and much like a prize fighter it forces you to the very brink of facing the last iota of your strength and stares at you wide eyed, shoulders squared, challenging you to another round. You might assume that doctors, especially specialist, will just see you if you are ill. You might assume that they will continue to care for you if you are ill. You might assume a lot, I did.
So if you’re still reading you may be wondering what happened yesterday that put me into such a tailspin. If you know me, you are definitely wondering, as I’m a pretty calm and composed person, patient, quiet, reserved and not easily shaken. It all started last year actually. I had been seeing a rheumatologist who I really thought was on my team. He was my favorite doctor. To this day I haven’t a clue what happened. He just told me he couldn’t help me anymore and to let him know if something changed. Here’s the thing with CFS, something is always changing as your central nervous system is going whack-a-do and I was telling him of those changes as he concurrently was giving me the shoulder shrug. I was really, really disappointed. But I took this as a sign that maybe there was a better doctor out there for me. (You know the saying – everything happens for a reason? I no longer believe that by the way. Before I got sick I believed it hook, line and sinker. Now…nope. I’ve seen too many people struggling, too many young people, too many children.) Anyway, I dusted myself off, got in to see my NP and asked for a referral to a new rheumatologist. That was in March. Nothing happened. I waited at least a month and then contacted the NP again. She apologized…kinda and said she’d resubmit or rather submit as she never had actually requested one. And then I waited some more. I believe this takes us to May.
So mid May rolls around and I receive a referral and I’m filled with hope. I call the office to ask if they treat CFS. I’m put on hold. I’m hung up on. I call back. I’m put on hold again. They say they will call me back. There never do, but the insurance company calls me and says that office is no longer contracted with them. They will find another doctor and let me know. I’m bummed, but hopeful. Referral number two rolls in and folks I’m thrilled. Upon googling her name I see she is involved directly with CFS research at UCSD. Unfortunately the phone number doesn’t work so I call UCSD directly and they aren’t able to help me as she doesn’t work in the office. After several attempts I call the insurance company. They ‘elevate it’ and then decide she’s not going to work but they assure me they will find another doctor. I wait. It’s July.
With growing frustration I’m ever so relieved when I receive yet another referral to a professor of rheumatology at UCSD. Surely he will be a great doctor to see. I call the number. No answer. I call again but beg for anyone to call me back to let me know if this is even a doctors office and finally I receive a text. A very lovely lady told me this is his business office but I should contact UCSD medical center. Again, I’m filled with hope. So I call, and after what felt like 10 transfers I was told he doesn’t work there, in fact he only sees patients if they are in-patient. Dead end.
I call the insurance company again. And yes, this is really happening, word for word the truth. The lady I spoke with was second guessing me. Put me on hold and then came back and said that yes she had confirmed everything I just told her and they would refer me to a doctor that actually worked in that office at UCSD. At this point I have zero faith, but I’m still hopeful. Mind you by now I don’t even know how many times, nor how many people I had spoken to at UCSD Rheumatology, most of which I had told I had CFS and was looking for a doctor to care for that specific illness.
This brings us to last Friday wherein I receive a call from the insurance company saying we have spoken to someone at the UCSD rheumatology office, and we have faxed your referral. In other words you are finally ready to go and all you have to do is call to make the appointment. I’m cautiously thinking maybe, just maybe this is really going to happen. Which leads to yesterday. I should have known when I dropped my oatmeal in the dogs water dish and the string broke off my tea bag that I was headed into Monday territory. After a little pep talk and some chamomile tea I nervously dialed the phone. Now I so want to tell you that it was smooth sailing from here on out, that I made an appointment for next week and it was all worth it in the end because I was referred to this great doctor who is willing to actually see a CFS patient. But as I’m sure you’ve assumed given my mood, it didn’t go that way. What really happened was that I was told by the appointment setter that they at UCSD do not see CFS patients, at all. I asked her what they do with them? Where do they refer them? No answer. I nearly begged her to just tell me where they refer them so I can try to see whoever that is. She just kept repeating, “I’m sorry.” It was when she said she could understand my frustration that the pot boiled over. And folks I diplomatically, calmly and without raising my voices a bit expressed to her that she did not in fact ‘understand’ as she was at work, working, while I’ve been housebound for three years, that I’ve spent months and hours of my precious energy to get this appointment and just like that, she said no. I then hung up and cried, just a little, but the pain spread across me like lightning seeping into every crack of who I am. The rejection, the fear, the frustration, the despair, inching it’s way into my soul.
So now it’s today, I’ve yet to call the insurance company as I still feel like I’m standing in front of a brick wall, but I will. Before I do that though I’m going to start calling rheumatologist offices and ask if they take my insurance and if they see CFS patients. This will use up what little energy I have and need to do things like shower, prepare food for myself and attempt to take micro walks. But my choices are to do that or not do that and I’ve never been one to sit idly by, that and I really have no idea what else to do. And if ANYBODY out there in California has any better ideas, please, please let me know. Sometimes I wonder if my blogs should just start Dear Diary as they really are just me trying to survive in one of the most trying seasons of my life. But I know there are others out there who will benefit by knowing they are not alone so I’m posting. So just to wrap up, one rheumatology request back in March, still no closer, sometimes it all feels too overwhelming, but there’s a little fighter in me, a flicker in my soul that says I will not back down, not yet, not ever. Now I will take a deep breath in and upon release I will let this gooooooooo. I feel better already.
Wishing you all good health and happiness and may you never ever have to experience U.S. medical ‘care’ like I have, ever.
Thank you for reading! Here are a few recent paintings to brighten the mood or to prove to you that despite it all I’m still pursuing happiness. Check out World Watercolor Group on facebook or instagram if you like to watercolor, all skill levels are welcome.