I’m well on my way on the road to recovery. I’ve been doing more and more things independently, and I’ve been walking up a storm. But I’ve been asking myself how much better is better enough? What risks am I willing to take to achieve a complete recovery?
Since my Baptism three weeks ago, I’ve only used my wheelchair twice – once to attend an all day Transmedia Conference at USC and once to go to the Santa Barbara Zoo for the day with the Singles Ward at Church. Though I’ve been doing fabulously with increasing my stamina for walking, I’m still a long ways away from being able to walk around all day at a hilly zoo. The conference and the zoo were both a blast, but it amazed me that I already feel so weird being back in my wheelchair for short periods. It’s hard greeting people’s belly buttons again when I’ve finally been able to look people in the eye for the first time in over a year. I also feel more visibly disabled than when I’m just using my walker.
And I’m worried I’m headed back to my wheelchair. The more I walk the more my joints have been hurting me. But I’ve been pushing through the pain anyway which probably hasn’t been the best idea because I have now given myself an overuse injury in my left knee. Now I need to get a knee braces and I’m considering getting ankle braces to prevent further injury. I’m also supposed to start physical therapy.
So though I’ve been doing great at increasing the distance I can walk, it has come at a cost. So that is one part of the equation.
The other part of the equation is the question of how I’ve been able to reach this point. I believe it is largely a miracle. A gift from God that has allowed me to recover my strength so quickly. But my doctors feel (and I agree) that it is also that the Rituxan that I did all those months ago has finally shown some benefit. So the question becomes would another round of Rituxan would get me even farther? And is that worth the risk?
Those Rituxan infusions were no walk in the park. I had problems with low oxygen during the infusions themselves followed by weeks of needing to be on extra Prednisone to counter an adverse reaction involving horrible back pain, fevers, and a rash. And that was relatively minor compared to the other risks involved which could rarely include life threatening complications and infections. But if the Rituxan helped reduce my joint pain this far, how much more could I be helped by further infusions? That is a question I will discuss with my Rheumatologist at my next appointment.
In the meantime, I’m left to ponder if this is as pain free as I can get without further risk, can I live with that? Am I better enough? But even as I write this, I think I know the answer.
No.
I want my life back. I want to live without pain every moment of every day. I want to be able to go hiking and play tennis again. I want to be able to make plans and not worry about how much energy I’ll have. I want to be able to accept jobs and not worry about ending up in the hospital in the middle of them. I want to be able to go back to school and not wonder if I’ll stay healthy enough to make it through the semester.
So NO I don’t want to be better enough. I want to be better! And I’m willing to risk a lot to get there.
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Post tags: ankle, ankle braces, Appointment, art, baptism, belly buttons, Better, Church, complete recovery, complication, Conference, distance, doctor, Doctors, Dressed, Elephants, energy, fever, gift from god, God, health, help, hilly, hospital, infusions, joint pain, joints, knee braces, left knee, Medical Specialties, Medicine, miracle, mom, moment, overuse, overuse injury, oxygen, pain, patient, physical therapy, Prednisone, question, Recovery, Rheumatologist, risk, rituxan, rituxan infusion, Rituximab, road, Santa Barbara, santa barbara zoo, short periods, Singles, singles ward, stamina, Storm, strength, tennis, title, United States, usc, walker, WALKING, week, wheelchair, worth the risk, Zoo
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