As the days go by and my surgery draws a little closer, I am becoming more and more nervous. I constantly think about the day I found out I had to have my colon removed and how it changed my life forever. I remember sitting in that room on June 27th thinking that I would never make it to this point. That I would be so discouraged from my ostomy that I wouldn’t be able to do anything or go anywhere.
I always talk about how much my perspective has changed since July. How I am so excited for these surgeries and I haven’t felt a unnerved at all. I even went into that operating room on July 1st without a tear in my eye or a worry in my head. When just 5 years ago when I had my wisdom teeth pulled I threw an absolute fit and refused to go into the operating room (if you can even call it that when all they’re doing is pulling teeth). Or when I had my tonsils out when I was 16 and I refused to breathe into the anesthesia mask and told my dad to take me back to school. I have obviously been through so much worse since then and since being through all of it I figured that these surgeries and this journey would come with such ease. That I have already been through the thick of it and the rest will be a joy ride.
That all came crashing down for a few days when I spoke with my surgeons nurse on the phone on Wednesday. I was calling her because just a few weeks ago, my internist that has seen me through all of my UC struggles told me that I tested positive for Lupus. Now, let me be very honest, when she went to test me in her office about a month back, I remember thinking, “there is no way I have Lupus.” After everything I have been through, how could something else go wrong?
But the pain in my joints is difficult to ignore. My knees and ankles feel so stiff and sore, that when I get up to walk from a seated positing or laying down I have to limp a few steps. I know pain better than a lot of people and my disease has made me not one to complain, but I know what I have been feeling is not normal.
So I told my doctor that and she drew my blood and tested me for Lupus, since sore and stiff joints are a main symptom of that disease. When she called my house I thought nothing of it, that she probably was just calling to tell me that everything was normal and to carry on with my life until my next surgery. When I finally got to calling her about a week after my appointment, she told me that I had tested positive for Lupus. Everything else she was telling me came in as static. How could this be true? She explained to me that at times, when you have a sever auto-immune disease such as colitis, it can trigger other auto-immune diseases such as Lupus. She said that we couldn’t tell how long I have actually had it since I have been on steroids for so long and prednisone calms inflammation.
Full painc mode. I got off the phone, called my mom, bawling, wondering if this could really be true. My dad always warns me against reading symptoms online for medications, surgeries, UC, etc. I usually don’t listen, but this time I did. I had this suspicion like this can’t be right. I went home anyways to see her and talk with her about possible medication that I might have to start to treat Lupus. My dad then called me and explained that he doesn’t want to say that I have Lupus, but he doesn’t want to say that I don’t. He told me that I cannot start any medication before I know how this will affect my next surgery. I knew he was right. I wasn’t going to do or start taking anything that could affect my future j-pouch.
I went home, let my doctor talk like my dad said and got the prescription for the medicine. While I was at home, my dad spoke with a rheumotologist who told him that she doesn’t think that I have Lupus, that my body is still in shock mode from everything that has happened to me and that my numbers from blood work are still going to be off.
We all breathed a sigh of relief and I went back to Columbus, leaving my medicine for my so-called, “Lupus” at home.
I called my surgeons office on the way back to Columbus, just to brief them on what was going on. I figured that since I hadn’t heard from them for almost 2 weeks that they must not be too concerned and that I should maybe start to take the medication just to find some pain relief. When I finally spoke to my surgeons nurse and I told her what had happened, she explained to me that I do not, in fact, have Lupus. That my body still has severe Colitis at this point, since some of the disease hasn’t been removed from my body yet and that will happen with my next surgery. She told me that I can see a specialist, but she highly doubts that anything is wrong. That my joint pain is a symptom of UC and I am feeling the pain now because I am no longer taking prednisone. She said to work through it and hopefully it will subside after my next surgery.
I explained to her that I was happy because I did not want to have to go on any other medications, especially prednisone or any kind of steroid every again. I asked her off the top of my head if I was going to have to have another stress dose of steroid for my next surgery. Thinking that I already knew the answer to that question because my dad had told me I would never have to do that again.
Boy were we all wrong. I have to have another stress dose of steroid when I have my surgery. I started panicking, thinking, “I’ve been working so hard to get this steroid swelling off from the last time! Now I have to do it all over again?” Yes. My body was too sick and I was on prednisone for too long to not have it for surgery again. I haven’t been off of it long enough.
I think through feeling so good for the past few months I have forgotten how sick I really was. How severe my disease process was and how much I suffered for such a long time.
It made me realize that I still have such a far road ahead of me. I have a lot o f accomplishments and a lot of disappointments coming my way and I need to be prepared for that. Last time I only had 3 days to think about the changes that are going to occur, this time I still have a long 7 weeks to think about what’s going to happen next. I’m not sure which one is worse.
My dad explained to me that I won’t have the same body changes as I did with the last steroid dose, since last time I was on such a high taper and so much TPN that I went into the surgery already bloated. This time I won’t have any of that. Let’s hope so.
Until then, I’m going to try to focus on the positive. I don’t have Lupus, thank God. But I do need to prepare for another surgery and to not feel so good again. I need to prepare for my body to change again and the ramifications of that. I need to start preparing a mindset that doesn’t get discouraged when I don’t reach the milestones as quickly as I would wish as soon as I wake up from surgery.
I need to follow the rules they set for you when you are recovering from surgery in the hospital. I have to walk slowly, one step at a time, before I can run again.
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