You know what? I'm in a lot of Pain right now (11.3.12) and writing this is the only way I feel I can distract myself. I was hospitalized because as I was walking to my doctors office I had to stop several times to gather myself by trying to control my breathing because I couldn't breathe and I was having pain at the same time. The social worker I just happened to run into suggested I go to the emergency room (ER) since the doctor I was going to visit was at jury duty and the person sitting as the replacement wouldn't have an open appointment till hours later.
I went to the ER and was treated with oxygen, a nebulizer treatment, and finally ketamine. The thing with treating my pain with ketamine is that I have to be admitted in the hospital in order to receive the treatment. Ketamine is the only drug that helps my pain now, not narcotics or transfusions. So my options are more than limited. It's frustrating to even think about it. To be honest it scares me to think about the reality of my fears. The options I have to treat my pain are really one thing: ketamine. And without it my fears have been--what will happen if I build a tolerance to it? Will I be left with no way to manage my pain?
The truth of the matter is that I'm in the hospital about seven months out of the year. That's NOT NORMAL!! It's at the point where my doctors have been discharging me home even though I'm still in really bad pain. They say I'm on too much ketamine and that's not good for my QT (refers to a group of disorders that increase the risk for sudden death due to an abnormal heartbeat.).
In spite of my pain I was told that I have to be discharged adding--there's nothing more we can do. Can you imagine that conversation? I know what she's about to say and once she tells me- imagine what I must have been feeling. I felt numb. I felt like OMG it's gotten to the point where I'm totally on my own?!? Then she asks me if I have any questions. I mean I know it doesn't matter what I say because once your told you have to leave whether your in pain or not-- what else is there to say? I knew no matter what I said things wouldn't change but I understood that she was just trying to give me something to quiet the hurt (I think). I appreciate her tact. I can't imagine being chosen to be the one to tell somebody that their pain can't be helped--to their face!.
When they started discharging me in pain--I'll be honest--I was angry because all I could see was my pain and when your in pain things like conversations or decision making are ignored because all I can think of is God Please Make IT StOp--Take it Away! How could I see anything else? I've learned to digest the different phases of my disease so I stopped being angry at them, stopped being frustrated with everything and just pray and leave things to God. God will guide me and whatever needs I have. Especially when it comes to my disease. Whatever God allows I take in. When I think of the team of docs that work with me--I see how hard they have worked and continue to work, I think of the many meetings they had on my case, and I think of the consultations they've had with me--throughout the process keeping me informed on ideas for my pain management . Its been a long process of which I've always been included in.
I realize the work they've put into me and I thank them for it but where it ends for them it continues with me. I can't step away and say I've done what i can. My pain is hard to control and being left with no options is a huge reality for me. For instance, my discharge. All that's in store for me is endurance.
So I've made the decision to just get what I can from my docs upon admission into the hospital. When they discharge me I’ll just continue to pray that whatever treatment I get will be sufficient. I'll just lay at home in pain and pray to God for his grace. I've been told I need to learn how to deal with the pain as it is. The thing is all my life I've had to endure the pain and there's no getting used to Pain!! Could you endure the pain of someone pulling or ripping off your arm? That's how the pain feels sometimes. Or what about hundreds of knives being stabbed into your body? Another--not being able to walk or talk because of the pain. My family has had to carry me because of the pain. This is an even scarier journey I'm about to partake in and it seems I stand alone in this phase. I appreciate all the time and hard work the hospital staff has put in. I wish there was more they could do but they've done enough I guess. I wanted to blame them for the intense pain I've had to endure when discharged and at home but why? I thought they gave up on me but that's unfair.
It's hard for people to empathize with the pain I go through. Most don't understand. Some friends have walked away from me because of the pain they saw me in. I went along with the justification that I'm hard to be friends with because its true. In the past there were phases in my health back then. It went from the doctors treating me with pain meds, to their being frustrated with not being able to find an answer for my pain despite their efforts, and finally their frustration meant since they couldn't figure things out I needed to be discharged. I could always predict when the doctors would want to discharge me. Despite all this I would have months and months after discharge to live my life, enjoy my twenties, and be a good Christian.
Now I’m isolated/not social because I have no free time to be social between my hospitals admissions and my recouping period. I live with my father and his wife so I can get treatment from a specialized hospital nearby. I’m on disability because of how sick I've gotten that it keeps me from being able to work. I’m single, while all my peers are married and having families. I've seen a lot and endured a lot and lived a lot differently than most. Don’t feel sorry for me instead please Pray 4 me! I would die for the chance to get back into life but my life is here-now!- and I’m grateful for the amount of energy God spends on teaching me hard and necessary lessons of all sorts. Despite how I hate the control Sickle Cell Anemia (SS) has on my life, I Would Not Be The Woman I Am Today without it!
The truth of the matter is that it will always come full circle to me, my disease, my thorn, my problem. This disease chose me not the other way around. Sometimes I feel people forget that. Even my doctors. Though they're all great people I know if they lived a week in my worst pain they'd really understand and sympathize with Sickle Cell suffers in such a different light. God will guide me through what's to come, good or bad! This disease has directed everything in my life, I’m just along for the ride. God has a plan for me! God has a plan for YOU! Jeremiah 29:11-13.
This post first appeared on The Unveiling Of Sickle Cell Anemia~A Life's Story, please read the originial post: here
