If you don’t want to hear anger, frustration and defeat, then I would not read this blog…
This past few weeks/months have been a disappointment for many reasons and I’m doing my best to not roll over and let my fibro and PSA win.
First, the most frustrating part of my life at the moment….
I am going on almost or over (never sure with chronic pain exactly when something starts) three months of having intense pain directly on my spine between my shoulder blades. My Rheumatologist pushed muscle relaxers and pain medication. Not happy with that decision, I went to my family doctor who ordered an X-Ray and MRI, both of which have come back “normal.”
Hearing the “your test was normal” diagnosis as a chronic pain patient is a frustration I can’t seem to convey to “regular” people. Do I want something to be “wrong”? No. But do I want a valid reason for this pain? YES. All I want is for my pain to be something a doctor sees as “real” and “treatable” not…oh… “She has chronic pain so we don’t really have to take any of her pains seriously.” I wonder, just wonder, if I had walked into any other Doctor’s office that had never seen me before, who didn’t know what I suffer from, would more steps be taken to find a source of this pain? I know the difference between my fibro pain, I’m learning my arthritis pain…and this pain just doesn’t feel like either of them. Could it be? Maybe. Am I ready to accept that now? No…not until I take a few more proactive steps.
There is nothing “normal” about chronic pain conditions. Why should a test result make me feel like I should be normal because IT said so? Every time I get a test back that shows “nothing wrong” I feel like I don’t have the right, or the justification to say that I hurt, or that something is wrong. I’m so tired of feeling this way. I’m tired of feeling the need to be overly strong for other people, or hide what I have from other people. I don’t feel like I’m “allowed” to be “sick.” Which makes me feel unimportant, and makes me feel belittled by my conditions. Yes, I’m having a pity part, but I feel like it’s justified.
Now to the second most angering, frustrating and defeating part of my life in the last few weeks? My epic fail at my gofundme efforts to raise money for NfmCPA, (http://www.fmcpaware.org). I know, I know, it’s been less than a week, but I can definitely say the response has been less than astounding. Of my $500 goal, I have raised….wait for it….$40.00.
Realistically, I understand there are many reasons people didn’t donate. Budget at home is too tight right now. They are getting bombarded with gofundme requests and mine got lost in the cracks. So on and so forth….
But I can’t help but feel defeated that it is because of my cause.
If I had asked for money for cancer research, would I have had the same response? Here is some perspective.
Approximately 1 in 8 women will suffer from breast cancer (I’m using breast cancer as example because there is a great track record for donations made to research and treatment). It’s estimated 90 percent (of stage one) breast cancer patients will survive (ww5.komen.org). THEY WILL BE A SURVIVOR.
Approximately 1 in 50 women will suffer from fibromyalgia. 100% of fibromyalgia patients are not cured. We are considered survivors for learning to live with this condition, not for beating it. A lot of people probably think this is not a fair comparison as most chronic pain conditions don’t come with the risk of death, as cancer does. But isn’t it funny how the definition and expectation of the word “survivor” changes from condition to condition.
(Please don’t get me wrong…I’m not trying to down-play breast cancer by any means. My mom and mother in law are both survivors and I am forever grateful for donations made to their cause that helped with research or treatment that helped them to survive.)
What if had been raising money for a school fundraiser for Baby A? Every year we support our own, or someone else’s, child by buying overpriced candy tins, or wrapping paper. We buy these things without hesitation, but there seems to be some hesitation to my cause.
If people matched their donation to me with what they paid for Girl Scout cookies I probably could have met my goal in a few days.
I understand these fundraisers go for great things too. The Girl Scout cookies support “girl power” and a great program for girls and I love that. I know the overpriced candy tins and wrapping paper help support schools that are probably inadequately funded.
I get this.
But how can I help but feel upstaged by a cookie?
To take it to the over-dramatic level….why is my pain (and the pain of everyone else who suffers from chronic pain conditions) not important enough for a small donation. Why do people support thin mints, but aren’t supporting research that could allow me, and so many others, to FINALLY live a life without pain?
People are easily frustrated with chronic pain patients, as we are so often judged as being complainers. We complain about the pain, we complain we feel as invisible as our illnesses, we feel ignored and brushed off by many in the medical community. We don’t feel like people want to help us, to a certain degree.
The lack of interest in my fundraiser dug that disappointment in a little deeper for me. And while I usually try to have a “fighter” attitude about things like this (nobody going to get me down), I have to admit I’m disappointed.
I am leaving the fundraiser open until the end of the month, and then gladly donating what I have to my cause. If it’s still only $40, then I hope that is the magic $40 that makes a difference.
Not one to take failure lightly, I felt the need to redeem myself.
So for Fibromyalgia Awareness 2015, I decided to do something else. I figured all of this frustration I’m letting out in this blog is usually dumped on my husband’s lap. While I know he handles it well, I know he wishes he could talk to someone who truly understands what it is like to care for someone with chronic pain. So, with his help, he and I are staring the “Chronic Pain Spouses” support group on Facebook. Please let your husbands/wives/partners know about this page. Search for it by its name. I think it’s just as important for our loved ones to have a place for support. This is a private group where they can vent, get advice and get understanding without judgement.
If we can’t give money, we can give support.
If you made it through the end of this negativity, thank you. Thank you for listening to me when I’m at a low point and I need ears the most.