An All-In-One Catch Up Post:
It has been a while and a lot has happened since my last post. There are a couple of reasons why there hasn’t been much activity around here lately. First off, I had been sick and was left with barely any motivation to do anything. Second off, what little motivation I was able to muster was channeled into trying to complete the revisions and formatting of my books. I’m still intent on getting those suckers published as soon as possible.
With that said, here is a brief recap of what’s been going on with me lately:
I had a very informative and productive (and exhausting) week at the National Institute of Health while participating in a couple of graft versus host disease studies from 18-22 April, 2011. One was a Natural History Study of GVHD. This is a non-treatment, research study designed to collect as much information about the patient’s relationship with the disease as possible with the hope that what is learned can be applied to future treatments and cures. The other was a Bronchiolitis Obliterans Syndrome (BOS) study to see how well I react to a drug called Montelukast. You may know of the drug by its market name of Singulair, which is prescribed to treat asthma. There is evidence that the drug also helps those with BOS. Unfortunately, the FDA has not yet approved it to treat BOS so the study is designed to get the data that will enable the FDA to give its approval. So far, it appears the drug is helping me. Good stuff.
Unfortunately, right after the study, I came down with a nasty chest infection that manifested itself as an even nastier cough. Not long after that, I then contracted the BK virus. This is a very common virus that over 80% of the population has been exposed to; fortunately, for most it is not a problem and they will never even know that they have the bug residing in them. However, for folks like me–those with compromised and weakened immune systems–we are at risk of it. After a couple of rounds of different antibiotics (I know, I said I had a virus not a bacteria…but for some reason this virus can be treated with an antibiotic. Don’t ask me…I’m just the patient) I finally started to feel better after about six weeks.
Unfortunately again, because I was feeling so crappy for so long, I missed many wonderful family events. My family celebrated an 18th birthday, two graduations and two weddings and I was able to only nominally participate in the 18th birthday celebration and one of the graduation celebrations. Those were both for my youngest child. Yes, all of my children are now officially adults and I am officially old.
And most unfortunately, we had the death of a very dear and loved family member that really sapped the joy out of life for everyone.
And now, just when I thought I was on the road to getting my strength back (I had been walking regularly for the past three weeks, incrementally making my way back up to 2 miles a walk, and I looking forward to soon start lifting weights again), I once again have contracted a chest infection with another nasty cough. Down again…
…but not yet out.
So that’s what’s been going on with me. It has been a tough first half of the year, to say the least.
Some good news:
Through this blog I have been able to make some new friends who are going through similar situations with GVHD as I am going through. We email each other with questions, provide some answers, and always offer each other encouragement. I was even fortunate enough to be able to meet one of my new friends at NIH for a very nice visit. It was wonderful to be able to share our experiences and draw strength and hope from each other. I’m looking forward to my next visit with him.
What lies ahead:
I am still singularly focused on getting my books, a novel and a book of poetry, published. That’s where most of my productive efforts will be applied until I can finally call that project/albatross a wrap.
I don’t know how many of you have visited my new kurtbrindley.com website, but I developed that site to be the launching point for my books. However, now that it’s up, I need to figure out how it, this blog, and the other social media sites I am involved in will relate to each other. For instance, I really enjoy the act of writing…I mean actually writing by hand, with a pen and paper, not just typing on a keyboard. That is why I developed kurtbrindley.com the way I did. I am thinking about adding a “Journal” section to it where I can write down my thoughts and observations the old fashioned way and then post them on the website. I can’t really do that easily with this blog. I can however, easily blurt stuff out here, which is convenient, but somewhat risky. And I can do it even easier on facebook and twitter. So maybe I will use my new website for my deeper and more developed observations and facebook for quick updates about my health and other perishable items in the news that I want to share and discuss (I recommend that you “like” me on facebook if you want to receive these kind of updates). That leaves this blog…need to think about what to do with it. Anyone who knows me even a little bit knows that I’m always shuffling around on different kinds of online mediums and media. More to follow.
What mostly lies ahead for me, though, is to get and stay well. I have too much yet to do to be bogged down by ailments and other annoying BS.
For all Americans: Happy Independence Day!
For all in the Northern Hemisphere: Happy Summer!
For all in the Southern Hemisphere: Happy Winter!