I guess we have a lot to catch up on. 5 months since you’ve heard from me? Sad. What has happened in the past 5 months also makes me sad, but no time for dwelling, I’ve got a recap to write. Hang with me, it’s gonna be a long one.

May 2014: Shit, meet fan.

It started with a hint of things changing, but I will spare you the gory details from the water closet. I have learned in the past 23 years with chronic illness, one is never sure if random bodily changes mean something minor (like a GI bug or a newly discovered intolerance to gluten) or major (anything life-threatening or related to TA). Of course we must investigate, hoping for the lesser of any evils, and in most situations that is the case. I have become accustomed to worrying that any new symptom could be a flare or cancer (taking drugs for 20+ years that predispose you can do that to a girl), finding out it is nothing and moving on. These chronic diseases turn those of us who have them into hypochondriacs in the worst sense – because what you fear CAN happen. It just might be the time that those symptoms mean more…. and in this case, they did. They meant a flare. As the first week of May continued, all GI tests were normal but my symptoms progressed to extreme fatigue and even more troubling, severe pain. I wish I could effectively explain the feeling of TA/Vasculitis pain. I know it is different for each person, but for me when I flare, it is a deep, stabbing pain in different locations, but consistently in my armpits, jaw, groin, behind my knees, ankles and/or in my abdomen. Think of places you might feel a pulse, and most likely I have felt pain there.

The fatigue and pain got steadily worse (read as uncontrollable) and I bought myself an admission to Duke for IV pain meds and IV steroids. This was May 11th. Three things to note (again, I won’t dwell because that just isn’t me – but if you care enough to read this, you know me well enough to realize that if I’m mentioning it, it wasn’t easy. And, not easy in a way that means devastating). First and most importantly, I had been successfully weaned off prednisone for the first time in twenty-two years in May of 2013.  Wait.  Did you skim that part?  Go back, that was key.  OFF prednisone. As in, nada. Nashi. None.

I got one year off.

In. Twenty-Three. Years.

And in that single year, I realized how it felt not to be on steroids for the first time since I was a teenager. My face returned to recognizable, steroid acne cleared, I lost 25 lbs. without really trying and lost fat in those places where fat should not ever accumulate (buffalo hump. Eww). It could also be mentioned, if I wanted to underscore the unfairness of it all, that during the one year off prednisone, I had a bilateral mastectomy to tackle. Despite what I went through with my surgery, the euphoria I felt in being well enough to come off prednisone cannot be overemphasized. Nor, the depth of my pissed-offed-ness in needing to go back on a high dose with this flare. Side effects returned immediately. Round face: check, acne: check, buffalo hump: check-check. But, I digress.

The final two things to note: May 15th was my scheduled movie showing of Decoding Annie Parker and May 16th was my birthday. I was in the hospital until the 18th.  In the interest of full-disclosure, my 42nd birthday despite being in the hospital, was very nice. I saw friends and family, felt loved and was well medicated. Also, through an amazingly thoughtful act by friends Teresa and Cara, my movie showing was rescheduled to May 29th so I could attend. After discharge, my symptoms did not improve. I was unable to walk without an arm to hold and not able to go further than a few steps assisted. I did make it to the movie, albeit in a wheelchair, and it was a touching and fulfilling event. I was so happy to have been able to see it through to the end. Thanks to all who came and watched.

June 2014: Broadway is dark. (Goo Goo Dolls, anyone?)

June consisted of handfuls of medication (without improvement), pain meds as often as I was allowed to have them and stillness. My world was as narrow as I could imagine. I felt like a disappearing act. It was as if I had been plucked up out of my life with everything else carrying on, as life does. Work was abandoned without notice, others helped feed our family, delivered groceries, and John was left to attempt to maintain a work schedule, care for all things children, pets and my slumped body/mind on the sofa. Like I said, dark. The sliver of light in the middle of June was the decision to try a new medication called Remicade (Infliximab) by IV infusion. It was quickly approved by insurance and I got my first infusion on June 14th. The second infusion on June 27th was expected to be a turning point, so we made the decision to continue with our Florida plans and spend most of July in Siesta Key. I knew my ability would be limited, but with a smaller living space and wider outdoor space for the kids, I wanted to be there.

July 2014: Saltwater heals.

Enough said. I had enough improvement in pain that I was able to wean myself off of the heavy pain medication while in Florida and very slowly regain a little strength. I still required assistance if I needed to walk a long distance or long periods of time (yes, the electric wheelchair at the grocery store with my kids giggling happened).

August 2014: Great expectations.

I had my 3rd infusion of the “loading dose” of Remicade the last week of July. I expected a dramatic boost. I expected one day I would wake up and be back to my old self. In many ways I’m still waiting. A few medication adjustments after the 3rd infusion (decrease in Cellcept) unfortunately caused a dip in progress and by mid-August, I was heading the wrong direction with more fatigue and pain. I had serious doubts that I would ever see my former quality of life. Fortunately, the past few weeks with another adjustment in meds (up on Cellcept, down on prednisone), I am again on the upswing. A new lump in my left chest capped off the month of August. Yes, a new small, round mass that multiple doctors told me felt like a lymph node popped up near my left chest incision. Remember my propensity for assuming random body changes could be major? Yep, I was convinced that the lump was something bad. It didn’t go away so after 3 weeks, the rheumatologist told me I needed to see the breast surgeon. I saw him last week and had a needle biopsy. Thankfully, it is neither a lymph node nor cancer. It is a benign collection of irritated tissue/fat necrosis that can develop after trauma or surgery. Finally, a little more light.

Summarizing the physical details does not come close to the whole story. I am still processing what the emotional cost has been to me the past few months. I do not recognize myself yet. The loss of control is overwhelming. I see glimpses of myself; my strength, my humor and I’m trying to focus on those traits to help get through. It is difficult for me to be this honest about my condition because I never want it to be construed as pity-seeking. I struggle every minute between being so thankful that I am not where I was in June, and being honest enough to admit I am still a long way from where I want to be physically on a daily basis.

But at the risk of sounding trite, the show must go on. It’s time to play the music; it’s time to light the lights. And there IS light. Enough light to want to sit down and write. Enough to be willing to share my dark. Enough to know that I will do what I can to not disappear. I have gratitude for simply being, well, here. I want to fight, even if right now the fight looks a lot less like a badass warrior princess with armor (that I imagine in my head) and a whole lot more like me dragging my prednisone-ravaged body through the day.

Getting knocked down gets tougher each time. My middle-aged body takes longer and longer to recover. And, I am tired. It also gets harder to stand back up not knowing when the next knock will come. Because it will. My knocks will look different from yours, but the dark will happen to all of us. Let’s not be foolish enough to think if we just get through THIS difficult event, the bright will last for good. I know that sounds pessimistic, but I believe it is a truth we need to acknowledge to have the guts to keep going. It takes more strength to stand up despite knowing what could come or how long you will be upright before you fall again. More determination to keep pushing that rock up the hill fully accepting that one day it will roll down and we will need to start again.

But we will keep going. Keep pushing. Because when the light comes back? Worth it, every time.

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8 Responses to Here

  1. Susie, I can’t imagine what you went through these last months other than what Hell must be like! You are so courageous for fighting back. It also make me angry that Medicine had been unable to find a cure with all the great minds we have in the laboratories across our country and in the rest of the world. My guess is that there are too few people that have it and therefore the big research money goes elsewhere! I am glad the lump was irritated tissue/fat necrosis and nothing else. I just pray that we can soon find a cure!
    Throughout you life you have shown yourself, your family and through this venue, many other people the amazing strength you have and the resolve to keeping fighting this! Kudos for that Susie!

  2. Leslie Wilkins says:

    Suze, your positive attitude through all this is such an inspiration. I know very few people who’ve been through harder times than you, but I know WAY more people quicker to complain, quicker to blame, quicker to wallow in self-pity. You are amazing. I’m SO sorry you’re going through all this.
    To more and more light in your life. xo

  3. avanslam says:

    Suze you are amazing! I have only had a “tasting” of the pain, fatigue and medications that go along with vasculitis in my short 5 year bout…let alone 23+ years of TA/vasculitis…truly remarkable and my heart breaks that you are having to deal with all of this! Please know that when your body and soul cannot shoulder hope, those of us who love and believe in you will carry it on for you. Thank you for your courage in voicing the reality of your journey — the antithesis of self-pity and instead speaking of your pain with the voice of a persistently positive attitude that continues to love and move forward. Here for you for whatever you might need. Love you!

  4. CANDY RITCHEY says:

    I love you, girl. Even if I didn’t know you, I would love you. What a wonderful human being you are…a gifted, wonderful human being. We had no idea all of this was going on with you and I send my deepest regrets about it. I’m sending you all the “light” I can find and I know that I will always hear your “voice” when I’m in my own darkness. A million kisses and hugs.

  5. Brenda says:

    Susie, you have given me your “light” these last 5 1/2 years in my dark days and now that I’m in a good place I give it back to you ten fold. I am so blessed and proud that you are my daughter. As someone said, my whole face lights up when I see you. Mom

  6. Erica says:

    Even when you were in the darkness, you were able to be my light as I dealt with my own knock. I cannot thank you enough for gathering the strength that afternoon to support me. Hope to see you very soon!

  7. Debbie says:

    Reading brought me back to a time when I was younger. . . my mom got rheumatoid arthritis, at the age of 30. She took prednisone, her body would swell, gold, valium and experimental drug that came along. Susie, what a difficult journey, I didn’t know. Keep pushing you have one of my favorites at your house, little red haired boy.

  8. ❤ What a journey! "I want to fight, even if right now the fight looks a lot less like a badass warrior princess with armor (that I imagine in my head) and a whole lot more like me dragging my prednisone-ravaged body through the day."
    Have you read Carry On, Warrior: The Power of Embracing Your Messy, Beautiful Life?? You do so beautifully, even when life is brutal.
    Carry on, you badass warrior princess. Keep embracing that messy, beautiful life. *Hugs*

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