I just don't know what to say. After spending a great weekend on a mini-vacation of sorts with a woman who I met online. she told me last night that she feels as if she's wearing me down physically because we spent the day out and about, had lunch and planned on going to movies last night. As the day wore on I was having a difficult time with my meds and staying on. we decided against our plans to go to the movies and just stayed home and watched TV. as we laid there in bed last night she related that she felt bad that I struggled so much during the day. I tried to assure her that it was not uncommon for me to go through periods of the day where I may not have much energy then once my medications are on again I can be back on my feet. She feels that she's hurting my health by causing me to want to be so active. She wants to take a break from seeing each other so I can recover some of my strength. We met online about a month ago. With her work schedule being very flexible we spend a majority of the day texting in a continuous dialog. She works as a physical therapist so when she is doing treatments we take a break. It is amazing how well we fit together so well in so many aspects of life. Since she lives about an hour away we have only spent an actual 3-4 full days together with these being her day off. There are a lot of things to be said this far. I realize that we barely know each other but you can imagine what I am thinking. The worry of losing her is huge. After going through the train wreck of the last year or so I have not felt so content with life in a long time. Now I feel like I have been punched in the gut. I am so mentally a wreck. If it was not enough to keep yourself up in spite of the challenges of dealing with this disease now it threatens to yank away someone who I am growing very fond of. I keep on telling myself that nothing has changed, we are still planning on seeing each other and we're still talking. So I will pray and wait. Like swallowing a bitter pill what more can I do?
Another subject that is bothering me is the thought that it is totally uncalled for that I suffer with these off and on times, up and down with the meds. There is a therapy out there, Duodopa, that works. It is in use, and has been in use in many other countries-albeit the difference is that they have socialized medicine. Whereas, here in the states we have capitalist medicine, the almighty dollar. I am more than convinced that it is due to the cost of the treatment and how to get the bottom line covered that is preventing this from coming to the market. I imagine a corporate honcho standing in the window of a cancer patient who is dying. His company has a drug which cures the disease but there is not enough of a profit margin to cover the development and bringing it to fruition. What a cruel @@@tard. I hope that market forces will act and soon another company will develop a similar therapy or a better one. They are working on the inhaler and there is a patch sort of system being developed in Israel. I have to just hang in there.
Another thing that overwhelms me is the fact that my mom now lives with me after having brain surgery in February. She has recovered but cannot return to work. Her monthly social security is only 300/month. Since my wife left me 1 1/2 yrs ago I cannot afford the house we are in. As such it is in foreclosure, I have been turned down for a modification. I have checked on rental rates in the area. At about 1,000 a month I can afford to cover everything without my mom but leaving only about 300 a month for food/gas and incidentals-not very promising.
Well that's my gripe for the day.
I can only say I am definitely praying for comfort, easing my mind.