Warm and cozy at home
I have made it through another day. Its always a relief when I make it to bedtime without major incident. I’ve used my trembling hands to open my water bottle and take my evening pills. Jeffrey will have to wake me later for my midnight doses.
I’ve been doing great at home. Well, I feel pukey a lot and super tired all the time. I’ve only left the house to go to the hospital and once to stand on the front porch and watch Amira on her scooter and I have no desire to venture further. This means that I had to miss the play that Xander was in at school. He had the part of a virus. The computer kind. I have video proof that he not only asked to play this role but that he enjoyed it! Unfortunately, with my sad little white count I like being close to my bed, safe and warm. This is fine with Jeffrey because if it was up to him he would have me locked in a room in the basement. Possibly chained to a wall if I ever tried to escape. He’s a big fan of the hospital bed alarm which thankfully we don’t have access to here at home. He may be over-protective but he does take good care of me.
My rash is starting to clear up after several days of severe itching. My magnesium levels are still chronically low and my medication was increased. I was trying to supplement with Reese’s cups (which are apparently high in magnesium) but I vomited Reese’s cups the other night so those are probably out permanently. Homemade ginger cookies are better for digestion. I’m still not eating great but I’m eating better than when I was in the hospital. I haven’t put on weight but I’m getting stronger.
I have started my twice weekly appointments at the James for check-ups with the hematology department. Monday’s blood work showed steadily improving numbers but a low blood pressure and magnesium level. I stayed for a 2 hour saline and mag drip while I slept in the recliner. Tomorrow we see Dr Vasu.
This week we received a check from the Be The Match Foundation. It is a grant for $1500 to be used for medical and travel expenses. This is the same foundation that we raised money for last summer when I was first sick. Read this. We will participate in the Be the One Run again this year with a goal of raising money for the foundation and raising awareness of the registry and stem cell donation process. This grant was unexpected and I feel proud that this organization gives money directly where it is needed without much waiting time. I’m hoping that we can have an even larger team for this years race. Jeffrey better start training if he wants to win first place in the Master’s category again! I have a goal of just being able to walk the 5K.