Last week as my bi-weekly CBT appointment was wrapping up she said to me, “Don’t give up.” This came on the heels of her comparing my chronic illness story to the movie Erin Brockovich, and rightly so. There are so many of us CFS/ME sufferers falling through the cracks. We’re losing everything, we are scared to tell all of our symptoms to our doctors, we are frustrated, sad and angry. We are spectators of our own lives. We are creating new identities to account for our new abilities to survive. We are letting go of past goals, dreams and ambitions. Since I’ve started seeing the therapist she’s listened to me, to my troubles, my triumphs, my strength and a lot of this through tears. She’s had a front row seat to the following, and so much more:
- I’ve explained to her how I lost my job due to CFS and even though I have several doctors letters saying I cannot work have been denied disability four times now and am awaiting a court appeal date which was requested in July of 2016
- Consequently I have no income, none
- In sadness I’ve expressed to her that I cannot drive, anywhere, ever. Not to the store, not to get my haircut…I sometimes feel trapped in this house but convince myself that I’m lucky as there are so many who have no place to call home
- In utter frustration I’ve conveyed to her that I have no doctor
- I am assigned a PCP in the office I go to but have never seen her in three years, the NP I do see is not educated on CFS (and I’ll leave it at that but there is SO much more I could say here). It’s very difficult to get in to the NP and I often see a floater who knows nothing about me or my illnesses. The floater I saw yesterday did not ask me ONE question about my physical condition but did manage to ask if I was seeing a therapist… Really? Haven’t we moved passed the FACT that CFS is not a psychiatric condition? Do any of these health care professionals read?! She then looked at me like I was trying to convince her the sky was purple when I asked if she would sign off on a disability placard. She said no, that the NP I see would have to do that…great. This was followed by them telling me in 2/3 weeks start calling in at 7:45 in the morning to make a same day appointment because the NP had nothing open
- I’ve confided in her that my support system consists of two people. Two. Ever felt like a burden? If you have ever had to rely on two people you understand that sooner or later they both get tired of caring for you. Especially when before I got sick I was the caretaker
- I’ve vented about how I still have no Rheumatology appointment set and it’s been since March when the ER doctor said I needed a new one and since April when the request was submitted to my insurance company
- And in disbelief I’ve toiled over how in the span of one month last year:
- The Rheumatologist said there was no more he could do
- The physical therapist said there was no more he could do
- The therapist…you guessed it…said there was no more she could do, basically…she said I needed to find a therapist closer to me
Since then my insurance company has repeatedly denied tests, medications and referrals. Somebody smell a rat? I sure do, but for the life of me I cannot figure out what happened. Is there some invisible monetary amount that insurance companies will pay out? Something happened that month and since then I’ve received very little care and most of the “care” I have received outside of my therapist and two specialists has been seriously lacking. I’d love some answers or to understand but this illness keeps me from digging. I’m going to put my money on this one…blue cross (the same company that denied my employer disability, twice) have put some unspoken monetary cap on how much they are willing to pay if you aren’t actively dying. I simply don’t know what else it could be
I’ll close by saying, I have no intentions of giving up. I don’t even know what that would look like. I’m a chronic illness warrior, but even us warriors have days where it all seems too heavy a load to bear. When she told me not to give up I think she meant the fight, don’t stop fighting for yourself, for ethical treatment, for the cause. And I intend to do just that as long as I am able. I intend to NOT give up.
Thank you for reading along. I appreciate that you took the time. Today’s blog comes on the end of an exhausting couple of weeks and it’s turned into a dear diary post, but if it helps just one person feel less alone then its purpose was served. Sometimes there is a strength in commonality.
Sharing several of my recent watercolors below as I follow along with World Watercolor Groups daily challenge in Instagram. These little doodles and paintings are one of the ways I’m not giving up, I’m pushing everyday to create my own happiness.