Saturday Aug. 21st. We got home late in the day and my guys put me right in bed. I don't remember much but I am sure I slept better in my own bed.
Sunday Aug 22nd. Still have the spinal headache but trudged to O'Bleness for my fourth treatment. Since the oncology/infusion department is not open on the weekends I had to go to the third floor regular section. The nurses were very nice but really did not know much about administering IVig. Three sticks to get my iv in but the plan was to allow me to leave it in for the next day. The pharmacist had to come up and assist with the math problem based on my weight. The nurse did not initially "turn on" my drip and that went unnoticed for about two hours. Not a great start but I had some good Oxy so not sure I cared. Monday's treatment went smoother and I was relieved to be done. IVig stays in one's system for four to six weeks and basically protects the
My headaches finally went away for good that Wednesday morning. I could sit up, eat and feel human again. At this point I took some time off of work and activated my short-term disability policy. My intention was to go back to work after Labor Day. My office took the reins and worked diligently to keep things running smooth. Thank the Lord for my very good friend and co-worker Lori as she took the lead. And, so I spent the next couple of weeks trying to allow my body to de-stress, heal and I did a lot of research.
I knew that I was very lucky in that my symptoms were mild in comparison to many GBS patients. I knew that we caught it and treated it early. The hope was that I would begin to get feeling back in my feet and hands within six months or so but it could be a year. There also was discussion that the symptoms (numb, tingly, sensory loss, muscle fatigue and loss of reflexes) could worsen before getting better. This syndrome is rare and it affects every person differently thus making "standard treatment" a tough call. So, as time ticked by I continued to be positive, count my blessings and generally remain strong. The symptoms had started to creep up to a bit above my ankles and past my wrists. Dr. Arce was not real concerned as we still knew early treatment was our best hope. Because there is no cure for GBS there is no "daily" treatment. Time. Time. Time. Oh, and patience.
I was having trouble walking and so I was pretty slow and unsteady. I decided to go back to work as planned but part-time. My doctor still wanted me to have plenty of rest and no stress. Driving was do-able and going up steps was slow but okay. Lori was a huge help to me, keeping a watchful eye and asking lots of medical questions. The month of September did not bring about a whole lot of change one way or the other. I did begin some physical therapy to help with balance and gait. Some days were good and others not so...my muscles easily fatigued and left me quite weak.
We continued to hope that the symptoms would subside soon. Our family and friends were so, so supportive and, of course, concerned. There were offers of food, canes etc but at this point I was still feeling decent enough to do a few things around the house and remain independent.
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