Thursday, November 7, 2013
It had been years since pain in this shoulder had kept me awake. The first time I had an x-ray that showed previous injuries, joint damage, but not active bleeding. I went to a physical therapist and the pain eventually subsided although it came back whenever I didn’t keep the exercises up. I had no memory of a bleed in that shoulder, but the x-ray was proof.
The older I get the more previous injuries become painful. I feel ashamed that I can’t tell the difference each time a doctor says, “Why didn’t you call me sooner?” The implication is that I was in denial. That is probably at least partly true. However, I have also had false alarms and then the doctor’s scornful reproach implies hypochondria.
The next time I had pain in that shoulder was when we moved to Florida six years ago. That time I tried to return to the exercises but the pain got worse by the day. I had been packing and hefting books for our move to Florida. Motivated to meet the deadline for packing I suppressed my doubts until the pain became so intense I had no choice but to go to the Emergency Room and get infused. The doctor told me to rest the shoulder and wrote a prescription for a narcotic pain medication. Resting was not an option. The movers were coming in a day or two and we would be loading the car and driving south to Florida from Massachusetts whether my arm had healed or not.
We arrived in Tallahassee a few days before the moving van and settled the cat in our new house before the three of us checked into a motel. The next few days we spent shopping for essentials and delivering them to the house. We made frequent trips to the house to feed and reassure the cat. My arms loaded with supplies I missed a step and landed on the paved walkway to our new front door. Not only did I smash my glasses, bruising my face, I hit my right knee and landed on my shoulder, the same shoulder that had been injured packing books. That time it took several re-infusions of fibrinogen to subside and the doctor instructed me not to lift anything over five pounds.
So after calling the doctor’s office on Tuesday morning I waited, and waited, and waited. No return call as promised. Wednesday morning I called again and this time I was more sure of myself. The pain was worse. “Oh, I’m so sorry,” apologized the nurse. “I’ll schedule the infusion for this afternoon, can you get here by 2 pm?”
Sometimes I lie awake at night, and I ask, "Where have I gone wrong?" Then a voice says to me, "This is going to take more than one night."
—Charles M. Schulz
Monday, August 12, 2013
I’ve kept a bag prepared and ready to go at a moment’s notice since I was a child, although the contents have changed over the years. I had no need for prescriptions medications then, and cell phones hadn’t been invented yet. When I was young, it included pajama bottoms, but not the tops. The bag was what I needed for a stay in the hospital. I would be given one of those buttonless gowns to wear, the ones that tie in the back but flop wide open when you walk. Wearing the pajama bottoms satisfied my modesty.
For years, the only way I could get an infusion of clotting factor was as a hospital in-patient. These days it is rare for me to have to stay overnight in a hospital. Infusions can be done on an outpatient basis. Younger people who have bleeding disorders are often able to do their own infusions at home.
Pausing for a moment before I fill the suitcase with clothes and footwear, I feel thankful that now my “grab it and go” sack gets to be used for vacations more often than hospitalizations.