I haven’t been completely honest with you all. When I decided to blog and blog about my chronic pain/illness, I wanted it to be raw and honest while still hopeful. I also wanted to talk about relevant topics surrounding chronic pain, which I think I’ve done, but I realize that I haven’t been as raw and honest as I’d like. I have discovered that as I stumbled along on this journey of my own that I have many versions of myself that I portray. There’s the Twitter version, the Facebook version, the version my parents see, the version my online friends see, the blogger version and lastly, the versions my kids and my husband see. There’s even a version that I choose to show myself. Every version is filtered through a different lens and there are even glimpses of un-filtered me, but for the most part I’m afraid of showing more than glimpses. I feel letting people see more than just a glimpse and you risk many things, from people’s annoyances, to your readers being frightened that they may end up like you if you share the same illness. It is most difficult I think with my blog because I am never sure how much of the messy reality that readers want to see and I really am hell-bent on giving my readers hope. Hope is something that is vitally needed and I also reap the benefits when I write about it. I feel better and am more motivated but it is difficult to maintain and difficult to constantly have these filters. But something dawned on me the other night when I was brain storming the idea for this blog and that is that my blog should be a safe space to be the most real and most authentic me. This blog that I share with you has many functions, from informative to sounding board for dealing with my frustrations and tears as well as my hopes and dreams. However, I realize now that I can be my most authentic self with you and free myself of those filters because you, my dear readers, understand exactly what I am going through. Sure, not all of you share the same illnesses that I do, but we all share some fundamental feelings and frustrations and insecurities that give us a common bond. I think one of the most common filters that we choose is, that which shields our true self from us. It is actually pretty easy to get lost in the other filters we use to show ourselves to people on all social media and elsewhere. We Snapchat images of our self with actual filters that can hide a myriad of flaws. We choose the best poses and our best smiles and we just place a lot of effort in hiding. It becomes so that we almost don’t know how to function sans-filters and we are trapped in the illusion we present to the world. But it becomes difficult to continue in the deception.
I started this post out by saying I’d been less than truthful with you, but it’s not so much lying as trying to show that side of me I wish I could be all the time. But I think you deserve to see my most authentic self because I am not living some Disney, storybook life and I can’t always have those filters on. That being said, these last few weeks have been hard. Epically hard. Even now, as I think about what to say or how to say it, I find it hard. I don’t want to sound whiny or bitchy, nor do I want to sound like I am in utter despair and worry any who read this. But living with chronic illness and pain every day does inspire all those feelings and sometimes more often than we want.
My surgery for SIJD (sacroiliac joint dysfunction) had been brutal. I’ve been outside of my home less than a handful of times and all of these outings (which were necessary save one, which was to go see Thor, which can be argued was necessary), left me in such unfathomable pain that it took days to recover from. A part of me wishes I’d not had the surgery, that my insurance had allowed more time, but the approval for the surgery itself took a year and then by the time I could have it I ended up needing another one (which I had in July) and that took three months to recover from and when all was said and done time had nearly run out. I had the SIJD fusion October 26th, which was the date my authorization expired. It literally came down to the wire. My rheumatologist had advised me not to have it, although she conceded that the issue was not related to my R.A., but she was very worried it would cause a flare and she was right. I’m so very flooded with inflammation that it continues to worry her and besides the regular treatments I am needing prednisone every few weeks. While I have not gone to the ER it is more because I don’t know which to go to rather than dealing with my pain effectively. This issue stems from that surgery in July, which sent me to the ER two days after I was released and being treated with morphine. A month later, come to receive a bill which prompted me calling both insurance and ER and discovering that our insurance dropped the contract with that ER so that I was responsible for the bill. Let me add here that first, it was the ER in the hospital where I had my surgery at and second, we never received anything from either my husband’s benefits department nor the insurance themselves to let us know they were not contracted with that ER. Hence, why I have been reluctant to go the ER unless we get this information first.
In addition to out of control pain has been a pain management doc who is frustrating me by not listening and my efforts thus far to find a new doctor have resulted in nothing. Five potential candidates called, two moved to different locations not remotely close enough to me, two do not prescribe opioids and only offer injections, of which I have already had enough and the other requiring you to send your medical files and decides after reading if he will take your case. So ultimately, I feel resigned to staying with a doctor that I don’t believe is truly and effectively helping me. I will add here something that happened today in hopes that one of you kind souls reading might offer your comments or insight into what might have happened.
I went to see pain management today because I developed an allergic reaction to the Belbuca that he prescribed. He changed me to Hydromorphone ER and then a 2mg “rescue pill” to manage pain if it returned before my next dosage (btw the extended release is only once a day). Here is what occurs: First, my usual pharmacy is out of stock of the extended release pills so I go to the backup which does have it and call the doc to have it send there. I get my alert saying it is ready and go pick up the extended release. When I get there the pharmacist tells us that there is an issue. The doctor did not put a diagnosis code with the prescription and apparently this is standard protocol. Not only that, but the other pharmacy (my regular pharm) did not have it this diagnosis code either and I have been taking narcotics for almost two years. Second, after we finally get this straightened out and go to my regular pharmacy to pick up the “rescue pill” they don’t want to give it to us. She tells us that my doctor should not be prescribing a 2mg pill, that he should have prescribed a higher dosage and she was skeptical of the whole thing (both my prescriptions) because of this Belbuca that I had the allergic reaction to is typically used to help addicts come off their medication. I am sure all of you can understand my alarm when I heard this. Ultimately, she gave us the medication, but I foresee issues with refills so I am going to have to call Friday or Monday and find out what is going on.
Besides the frustrations above there has been the battle with depression. I really try very hard to follow my own advise here and my tips because I do feel very strongly that you can’t just dole out advise, you have to take your own advise too. But it is hard and like everyone else I stumble. I have had a lot of pity-parties, a lot of crying and lamenting my situation. There’s also been frustration and anger. In fact, more anger than I am used. I am not inherently an angry person and I have learned to let a lot of things go and breathe through the anger until it dissipates, but I feel there has been problem after problem, issue after issue and it keeps building until every little thing sets me off. I have yelled at my husband and my kids more than I ought to and at friends who are just trying to help and the shame that comes along with these angry out bursts just leaves me feeling worse than I was. Adding to all of this are the days that pain blindsides me, which I am sure you are all familiar. It’s these days when I feel so miserable that if I allowed myself to I would disappear into myself and never come out. I look in the mirror and I just don’t know the face staring back at me. And yes, despite my best efforts, I still mourn the me I was. I think I will forever because I can never get that time back. Chronic pain stole it from me. The only thing left to say is..
Chronic pain is a bitch.