Monday, September 10, 2012

one day to the next

[this was written last night, after arriving home from the hospital, forcing myself to eat dinner, and making an earnest attempt at relaxation].

o, this exhaustion is unbelievable. It is the type of fatigue that is not resolved through sleep, but hopefully, slowly over time, through a conscious effort at self-care, I will be able to move through my days with the ability to complete sentences and step without stumbling.

tomorrow, I will focus on housing. we have made phone call after phone call after phone call. no vacancies and expenses beyond imaginable for individuals with disabilities (and that is not to mention those barriers to employment and income). we found an apartment close to the hospital that is beyond our budget, but reasonable for the downtown core, and will offer a short-term lease. we have been advised to wait on signing a lease, because all potential funding would be dependent on James' listing as a pre-transplant patient, but at the same time, we will not find anything in the downtown cores within our range that is not listed on the bed bug registry as a cockroach hotel. James will need to be officially listed for transplant to receive any financial supports. we are still in a period of complete uncertainties, but this may not be a decision that can we can linger on. we do not want to put it on hold for too long, and end up without any housing upon James' hospital discharge.

although James has not started the assessment process for transplant, we have been told repeatedly that he seems to be a good candidate. the fear is that James may actually not be sick enough to meet the requirements. this is absolutely impossible to comprehend with a lung function of 25%, significant difficulties breathing on exertion, and an almost daily decline in weight. unfortunately, or rather, fortunately, his body is not showing distress in other areas. James has worked incredibly hard in the last 15 months (and longer) to build a strong and healthy body that is now compensating for the rapid decrease in lung function. this may become a barrier to being listed, at least, for now. I'm afraid that we will have to wait for him to deteriorate further.

for now, James is on his third miserable thymoglobulin treatment with improvements in tolerance and more appropriate medications available to treat the side effects of destroying James' delicate immune system. (we requested these in advance of the first treatment, but of course, the order was never made, and James was made to shake and shiver in the middle of the night while waiting for a doctor on-call to order basic pain medication and anti-emetics).

there has been no change in James' lung function for the last week. this is positive in that it is not a decline, and could indicate a level of stability, but at the same time, it doesn't speak to the possible hope of increase from the anti-lymphocyte globulin. but, James has incredible strength, and continues to be willing to make any and all efforts towards possible recovery of lung function. he has the enduring hope of an eternal optimist. to say that his strength is admirable would be a complete understatement.

with shorter days, light is fading earlier, and it is time to focus on rest and restoration. I am going to take pleasure in reading for pleasure. this is not something I was able to do in the last seven years as an undergraduate. good night, and more updates to follow.

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