Tick Tick Boom

I tried writing three different versions of another blog post before finally abandoning the effort. This summer has really taken its toll on me, and I feel like I’ve lost my voice as a writer. I’ve struggled with this before when dealing with backlash and bullying from the patient community, but this time, it’s different – I’m in such a weird headspace with my arthritis that most days I don’t know what I want to say or how to say it.

My health has been a shit show for months now. Several flares have called into question the continued effectiveness of my Orencia, and I’ve spent the rest of the summer in limbo having joint after joint injected only to play the “wait and see” game before being able to move forward with more long-term solutions. Throw in the usual insurance approval BS, and more and more often lately I find myself on the verge of what feels like complete emotional collapse.

And part of this, I realized, is my tendency to normalize things that just aren’t normal. Last Friday, I saw my hand/wrist surgeon before my infusion, and when I was talking to his resident about having wrist surgery, I said something to the effect of, “It’s OK. I’m lucky to have made it this long without having surgery on my hands or wrists up until now.” As I was saying this, she shook her head “no” repeatedly.

By always normalizing and downplaying a lot of what I’m going through I’ve done myself a huge disservice by not allowing myself to feel, grieve and mourn things the way I encourage other patients to do so. On the drive to Tufts last Friday, I fought back tears the entire way while telling Vin, “I feel like I’m just going to blow at some point and I won’t be able to stop it.” Even worse than feeling like a ticking time bomb, is the feeling that I’ve created an absurd set of expectations that, whether or not they even realize it, a lot of people in my life hold me to. The expectation that no matter how hard stuff gets, I’ll always be able to put a positive and upbeat spin on it.

I just can’t do it anymore. I need space to be angry. I need space to cry and scream and vent and to feel all of these emotions that have me on the brink of explosion. I know that’s hard for some people, and I know it makes others uncomfortable. But you know what? It’s not my job to walk around with a permagrin plastered on my face so I can make the rest of the world feel comfortable with how I deal with my illness. And, more than anything, I need people to understand that by acknowledging some of the hard truths about my prognosis, I’m not being negative. It’s not being negative to acknowledge that this is my forever. It’s not being negative to feel hopeless at times knowing that I will be in varying degrees of soul crushing pain every single second of the rest of my life.

I’m having my ninth surgery in just three weeks – the purpose of which is to “cut the nerves taking pain signals from the wrist to the brain so the pain is either not felt or felt much less whilst also NOT damaging the important nerves that provide sensation and movement to the wrist and hand” {source}. I don’t know what’s harder to process: the fact that I’m having another surgery or the fact that my joint is so far gone that my only hope of improvement is severing nerves in a procedure that has about a 70% chance of success. If that’s how advanced my disease has become by age 33, it’s terrifying to think of what my future may hold. Fucking terrifying.

I’ve barely even had a moment to process how scary all of this is, because even though surgery is already scheduled, I don’t know if my insurance will approve it and likely won’t know until next week or the following. My chest is so tight with anxiety that I don’t feel like I’ve exhaled since Friday. It’s been three weeks since I’ve seen my other surgeon for my knees, and I still haven’t been able to get my insurance to approve a routine MRI without contrast dye, so my fears about surgery feel pretty well founded. I’m so beat up mentally right now that I honestly don’t know what I’ll do if we can’t move forward with surgery. I just don’t.

And I don’t really know how to move past this breaking point either. I want to feel positive about the fact that surgery feels like long-awaited progress, but another surgery is a hard thing to feel positive about. I want to figure out how to process these feelings so that I can begin to take some steps back from the brink. I want to figure out ways to avoid feeling like this in the first place. I want to spend as much time in the gym as possible between now and October 6th so that I can go into surgery as physically strong as is possible.

So I’m going to start with this: the next time I talk to someone about surgery, I will NOT say the following “since there’s no bone involvement, this should be an easy surgery and recovery compared to the more serious joint surgeries I’ve had.” Surgery is surgery. It’s a big deal and it needs to be treated as such. By me and by everyone else in my life.

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10 thoughts on “Tick Tick Boom

  1. Jody says:

    There is no easy surgery. Your honesty is not negativity, it is truth. And there’s a damned lot negative about this disease. Your voice is a positive!

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  2. Shirley O'Brien says:

    RA is our reality. You can’t ignore it . You need to acknowledge all your feelings. You are not being negative, just real.

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  3. crippledhandswrite says:

    I cannot begin to tell you how discouraging it is to hear of bullying/backlash from within the RA community. No one can understand what you are going through like people with the same disease so there should be NOTHING but support. Best wishes for a speedy recovery and that the Orencia starts working better. I do at home injections of Orencia weekly which apparently work better then the monthly infusions.

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  4. Wren says:

    First, consider yourself warmly hugged. Next: RD is serious. It can seriously screw your joints, your body, and you, up. Surgery is serious whether it involves cutting into organs and bones, or not. Nerves are serious. Having the use of your hands is serious.

    You’re not being negative. You’re being serious. Real. This kind of thing doesn’t require a “permagrin” ( may I just say here I *love* that word!) and doesn’t require unrelenting positivity. Sometimes we just have to get angry and sad because our reality sucks, at least for now. There will be time for optimism later, after all the bad stuff is part of the past, not the immediate and predictable (mostly) future.

    I guess I’m saying that you should just be yourself. Feel your feeling without apology. And know–please!–that you have friends who care about you no matter what. I’m sending you patience and calm and warmth and care right through the ether. Please feel loved. 🙂

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  5. Lene says:

    you get past the breaking point by not pretending things are better than they are. It takes so much energy and I know this because I used to pretend a lot more than I do these days. Then there was a time when I didn’t have the energy to pretend anymore and I discovered just how liberating it is to be honest. With myself and with others. And I think the key to that is being honest with yourself. Making it okay to be scared instead of pressuring yourself to put a positive spin on it. Because the feelings are there anyway and if you don’t find a way to express them, you’re going to go boom and usually in a really awkward situation. You have an absolute right to feel scared and angry. You have a right to your feelings, no matter what they are. Sending lots of hugs.Penny will deliver them for me.

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  6. Sherry says:

    This hit my soul… RA turns lives topsy turvy… now at 33 and feeling “like this”…I use sarcasm as a coping method awhile internalizing emotional outbursts… although overwhelmed…just know that your words genuinely helped me today. Good luck with recovery…and thank you again for sharing…

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  7. Sydney Harper says:

    Every surgery has risk and needs time for recovery. That you’ve reached the point to need surgery is also serious. I would worry more about you if you didn’t cry and scream and vent from time to time. The past few weeks my emotions and RA have been on a wild roller coaster ride so I get it. People want to have surgery so they can move forward but it doesn’t mean you have to be positive about the process and the need for surgery. Your feelings about all of this are a part of who you are. As someone who is relatively new to RA, the people who can let their fears and frustrations show help me cope. I’m one of those people who try to push those emotions down and it never works out. You don’t really know me but whatever you are feeling about this, I’ll support you. Sending you hugs and calm.

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  8. Angela says:

    Being able to share your story and write and speak so eloquently is a gift. Don’t listen to the negativity that may come your way. You are loved and appreciated far more than you’ll ever realize. I am 58 and was diagnosed when I was 24. I can honestly say that you are an inspiration to me. But when this rollercoaster disease hits a low, let yourself take as much time as you need to climb up again. Wishing you the best possible outcome with your wrist surgery.

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  9. Tatiana S. says:

    Hi 6 hip surgeries/RA😥 —I found your blog by accident but don’t believe in them so had to say something positive and try to offer you some help. I was diagnosed by Dr. Wallace ( Cedars, actually, a world reknown lupus expert & a….jerk, I don’t hold back), in 4-2011 at 37 yrs. Old. Came to find when I filed for disability which due to a horrible judge and attorney, never went through after 2 yrs. Point is, I tested positive for RA on 4 ANA tests and WAS NEVER TOLD in 2004, by the head of neurosurgery at USC ( hell yes I’m using these Dr.’s names…I want people to stay AWAY FROM THEM!!! There is such a thing as bad medicine.) My degree is in Clinical Psych from USC but had the privilege working in the medical community, hospitals in MANY different aspects and gained a lot of knowledge.

    I am 43 now, I have HIGH disease activity on my RA Vectra DA score ( I suggest u get this test done…most insurance companies DO NOT cover it but Crescendo Bioscience has a deal with my RA Dr,. Dr. Orrin Troum, also world reknown but a GOOD DR. he won’t keep you on something like Orencia ‘( hated it !!!), I’ve tried them all, TNF’s don’t work for a lot of people. Crescendo will charge $25.00 for this extensive blood panel most RA patients have never done as it costs almost 1,000.00 EACH test…gives u a lot of valuable info.

    I also have SLE Lupus ( DX’d 6-2011, also never told by my 2nd female Rheumatologist, went into pituitary full fledged adrenal failure on 12-6-2011….Oh, had my left lung collapsed 7-2011, large heliopneumothorax from routine trigger point injections (I don’t know what “they’ are injecting in ur joints, probably steroids…that’s what put me IN this pituitary adrenal failure where u make NO CORTISOL, ACTH, OR ANY HORMONES so everything has to be taken synthetically or in the case of hormones…compounded..insurance doesn’t cover most of those) by another idiot Dr. In MDR, Dr. Bajaj…stay AWAY from these dangerous ones if u live in Los Angeles or see Dr.s here.

    There are some good ones but I have become so I’ll over the past 6 years…have not been able to work or have any normal resemblance to a normal life. Had my left hip replaced this Feb. 2$ nod…ended up with cellulitis bilaterally, both feet and legs, for 4 months….still got out of my w/c & vacuumed every day, straightened the house, I thank God for a friend that moved in for 8 months after he lost his wife of 23 years, my childhood friend…would have died w/o his help….I have massive GI problems that cause weekly Dr. Appt. cancellations, IBS, SIBO, Colitis..

    There is ALOT more but I wanted to chat with u about a few non- western medical solutions if u r interested where u will NOT have to have these horrible surgeries I know all too well and can have your life back. I’m not selling anything. I don’t work remember. My name is Tatiana BTW…I HOPE THIS HELPS.😃 YOU CAN REACH ME DIRECTLY, t.sowden@att.net. I hope to hear from you, perhaps we can all help one another. That is my only goal.

    My very best-
    Tatiana

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