8/26/2019 0 Comments Its been difficult..I really wish I could put into words the difficulty of living with chronic pain + illness. In short - IT SUCKS. It’s awful. It’s miserable. It’s exhausting. It’s draining. Some days it’s completely soul crushing. I’ll be the first to admit that I am not always positive, I do believe everything happens for a reason, but that doesn’t mean I have to be positive all of the time. Now, that doesn’t mean that I’m negative and depressed constantly, but when the days get really hard, I cant help but be sad about the way my life is. My pain has increased over the last year or so, but especially over the last few months. It seems as though I’m just playing the waiting game. It took months just for the referral to be sent to a new surgeon. It took weeks for the surgeons office to call me back. In between all of this I’ve been going to physical therapy for massage and TENS unit therapy, but I’ve been waiting for insurance to approve more visits for weeks now.
All the phone calls, waiting, and frustration gets extremely old. Ive been wanting to write about my experiences over the last few months for a while now, I just haven’t had the energy. My baseline pain level has been about an 8/10 consistently, its been the relentless kind of pain that nothing can help, the nauseating kind of pain that makes it hard to do much. I had a fusion on my lower back years ago - that wasn’t done correctly, so that’s been bothering me. But the majority of my pain comes from my upper back where I have a little bit of a curve and herniated discs. Surgically, I am a complex case, so any surgeon I consult with is scared to touch me, its too big of a risk for them. It makes me feel like more of a statistic than a human being.. It’s as if they see so many people that they can justify leaving me this way, because I’m one failed case among hundreds of other people, so its not a big deal to them, they aren’t emotionally attached to me, my quality of life doesn’t matter to them. It’s okay if I’m on Percocet for the rest of my life because they have so many other patients that just one person, doesn’t matter. I feel like my pain management clinic is helping me stay the way I am, they’re helping me stay at an 8/10 baseline, rather than trying to help me improve my quality of life. When I mention that my pain is increasingly getting worse, they suggest 10 more milligrams of Percocet.. They don’t offer up referrals or solutions, they just work to keep me where I’m at. Oh you hurt more? What’s 10 more milligrams of Percocet? Again, I’m just one person to them, so its okay if I’m in pain and on opioids the rest of my life because I’m just a statistic. You would think that actually getting the paper referral sent would be the easiest part. But it was the most frustrating situation. I would call the pain clinic, they would tell me “were sending it right now”, I would then call the surgeon and they would tell me they didn’t receive anything so I would call the pain clinic back and they would tell me “were seriously sending it like right now” and again, they wouldn’t receive it. I’m not joking when I say that this went on for WEEKS. I came into physical therapy crying my eyes out because the referral still wasn’t being sent, so my therapist called and they told him the same thing, “were sending it like right now”, so when I came into physical therapy the next week and it still hadn’t been sent, my therapist called and yelled at the pain clinic, called and talked to the surgeons office, then called the pain clinic three more times before I finally received a call from the surgeon. When I finally did receive a call from the surgeons office, I’m thinking “sweet the referral got sent” but the woman on the phone tells me “we never did receive the referral from your pain clinic but we spoke to “My physical therapist” and were going to take that as a referral.” My pain clinic is literally so incompetent that the surgeon took a referral from a physical therapist, which never happens. They also needed copies of my latest MRIs which my pain clinic refused to send, so my mom and I faxed them. Anyways, its taken a few months, but I FINALLY have an appointment with the new surgeon. And I am just hoping and praying that this man can help me, my physically therapist agrees that its worth trying to find a surgeon to help me, because I’m so young, and my body is just struggling. I cant tell you how thankful I am for my Physical Therapist, he has been the most helpful in this “journey” and I am just beyond blessed to have someone who actually CARES about me, he doesn’t make me feel like a statistic, he actually makes me feel like I am worth helping.. It’s been really hard, but I’m really trying to hang in there, hopefully I can find some help soon.
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AuthorMy name is Madison, I have quite a few rare diseases and chronic illnesses. Archives
July 2019
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