Don’t Give Up

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.

 

 

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25 thoughts on “Don’t Give Up

  1. I am so so very sorry. 😦 I feel like there is little I can say that won’t sound like a platitude, but try to think of it as sharing solidarity. Insurance companies are the worst! Navigating these waters – doctors, insurances, illness – are stressful and aggravating. I think you’re doing a fantastic job, just keep on swimming. Take care! ❤

    Liked by 3 people

    1. Thank you for reading along and your kind words. 🌸 The struggles don’t feel as bad when you know others are there to listen if you choose to reach out. Yes, the health care system is definitely broken, and scary if you’re ill. I’m sorry you can relate … I wouldn’t wish this experience on anyone. Hoping your day is best as can be!💙

      Liked by 1 person

  2. Emma (Not Just Tired)

    Sigh. It’s so unbelievably tough isn’t it. I’m sorry things are so hard. It seems so unfair to lose everything through an illness that’s not our fault and then to receive no help/support. Thanks for writing this. It definitely helps others know they’re not alone. Well done for keeping going and I love your paintings. Sending love & hope x

    Liked by 2 people

    1. Thank you for reading along and the compliments!🌸 I’ve really grown to enjoy painting. This community has honestly been a huge saving grace for me. Before I found it I was really feeling so alone, but now I know there are millions of us and while it’s sad that there are millions of us, it helps too. Thank goodness for social media! Hoping your day is best as can be!😊

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  3. I am so sorry you have to go through all that. It does seem fishy, doesn’t it?
    I am so grateful and realise how blessed I am to have access to the National Health Services here in the UK and cannot imagine how tough it must be for all the chronic illness warriors worldwide who have to fight so hard to get any kind of support at all. Not that there is much that can be done for us who have ME/CFS, but at least we are not at the mercy of insurance companies and our tests and treatment, if any is offered, is mostly free. You are a warrior! Thank you for sharing your story, it is so important for others in the same boat to know they are not alone.

    Liked by 1 person

    1. Thank you for reading along! Interestingly I gather so much information from people in the U.K. who are actually provided medical information. Most of the Drs I see simply shrug their shoulders. So your healthcare system does help from afar.😊 And yes, no cure, but nice to at least know little bits about system failures and things that might help. Hoping your day is best as can be!🌸

      Liked by 1 person

  4. Have you had your IGA and IGG checked. Your immune system may be on overdrive dealing with food sensitivities These are not simple allergies (IGE responses) but systemic reactions invoking multiple systems. A good ND trained in immunology can help you negotiate that. The test is expensive though but the result may be as simple as giving up salt or dairy or eggs.

    Liked by 1 person

    1. Thank you for reading along and for the recommendation. I have actually had those tests and one is very elevated and if I remember correctly the other is not. I had changed my diet two years before getting sick (for fibromyalgia). I haven’t eaten much else but oatmeal, chicken, fruits & veggies and nuts for four years. Once in a while I eat eggs. It was working great for the FM but then CFS came knocking. I’ve tried cutting foods out, adding foods, several different medications and supplements and any change just makes things much worse. Things like vitamin C and peppermint make me sicker. It’s really unbelievable. I feel like the girl in the bubble. I’m confident though that researchers are very close to figuring the exact cause of CFS. So much research has been done recently and they are making great headway, which is very exciting. Fingers and toes crossed…answers are on the horizon! Thank you again I appreciate any and every idea.😊 Hoping your day and is an enjoyable one🌸

      Liked by 1 person

      1. I’m not as up on CFS as I am on Fibro which I was specifically thinking of. ME is the only cause I’m aware of and really that only describes the condition though Lyme disease causes similar debilitating symptoms. Apologies for repeating what you already know. My heart goes out to you.

        Liked by 1 person

  5. I can completely relate to basically all that you have said. The health system is different here, but offers little. My support network has always been small (was also once the carer/doer), but has shrunk even more & is basically my husband & children (when they visit home) now. My heart goes out to you. So much I could say, but you already know how it all works. Well done for having a vent. Sending gentle hugs. & definitely don’t give!!❤xxx

    Liked by 1 person

    1. Thank you for reading along🌸 I’m so sorry you can relate. I think a lot of ‘well’ people don’t realize it’s not just the challenges of our illnesses we tackle. We are put into positions we never dreamed of and are completely unequipped to deal with. But we warrior on, taking it one day at a time, learning as we go. Thank you for your kind words and wishing you a best-as-can-be day!💕

      Liked by 1 person

  6. I can relate to so much you say here and I truly feel empathy for you. I too have been fighting for disability, rarely am ever able to drive anywhere (once I drove to a dental appointment and had a horrible vertigo attack on the way home that truly scared me and made me not want to chance driving much anymore), and I also have had to fight to get many tests done, although I will say I am fortunate to have had two doctors that believe in fibromyalgia and CFS and do try to help me the best they can, however, insurance is not so helpful.

    Liked by 1 person

    1. Thank you for reading along.😊 I’m sorry you can relate. There are so many of us falling through the cracks in so many different ways. You just never hear about this stuff until you become one of them. It’s nice to hear you have two doctors that are supportive of you, it can really make a big difference. Because the ones that don’t make us feel awful, so that ones that do are like life preservers. Hopefully soon we will all be on the road to recovery and all those that didn’t believe us along the way can feel an iota of guilt. Hoping your day is best as can be! 🌸

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    1. Thank you for reading along, I appreciate that! I’m sorry you are all too aware of how this feels, it’s not anywhere I’m sure either of us thought we’d be, yet here we are. Feeling like a burden is literally gut wrenching. Our society is simply not set up to care for the ill. We are cast aside as less than and made to feel inferior. Hoping today gives you reasons to smile also that you know deep down, you are NOT an inconvenience. Sometimes I have to tell myself that, out loud. Big hugs!!

      Like

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