Tuesday, June 12, 2012

Some times we MUST share!

Dreamweaver, after reading my blog post from last night, posted some thoughts of her own in a post titled "Dreaming the Dream and Weaving the Path", on her own blog, The Back Burner. Its great! Go read it! I love this woman!

Monday, June 11, 2012

The Silence of the Blog....

Well...I see that my last post was in February. That would be the result of life suddenly running over me and leaving very large tire tracks up my back. I think that it might be a good thing to try to catch up. Because if I wait for it to slow back down, to catch my breath, I'll still be sitting here looking at a blank blog post with my brain churning. 

I know there are people who follow my blog posts and read what I write - those of you who do, please accept my apologies. You have to be wondering if I fell down a deep dark hole. The answer is yes, almost. It has sometimes felt like that. 

Just after my last post, the following happened - all in a one thing right after another blur, no time to stop and think...

-  in February, I abruptly came Out to my Mom, after years of being in the closet as a gay and transgender. 
- almost immediately thereafter, my beloved Dreamweaver was devastatingly diagnosed with Chronic Hepatitis B, or rather, it was identified, so to speak. 
- and immediately after that I had major oral surgery, which you don't want to hear about and I don't want to talk about. Suffice to say, that flattened me fairly nicely for a few weeks. 
- And my left hip went out. I mean it...went...out. As in, I went to the emergency room because I thought I was walking - if that's the term - on a broken hip. Which I was not, but you could have fooled me! 
- and as a result of said hip going out, I am now on medical leave from Graduate school, awaiting hip replacement surgery. Like, next month. 

All of the above happened between the end of February and the beginning of May. Its sort of been, "Wait, what???" in the extreme! So now, I am trying to figure out how to do this and get back in the rhythm of writing, because blogging is very important to me. Of course, any one of the events of the past basically 3-4 months listed above is a blog post unto itself. Long ones. A few of those qualify for several long blog posts. (Except for the oral surgery one we're not discussing - lets just say there were a few weeks where food was a distant memory, and I couldn't have written anything through the haze of prescription of Lortab anyway, and let it go at that...really! There, see, one thing off the list already!) 

I guess, to twist the old quote, I should "Begin at the beginning and go on till you come to the end: then stop.", as the King said to the White Rabbit in Wonderland. I guess looking over the events listed above, I have my next few blog posts lined up. And I think I will begin with the event that was perhaps the hardest one to grasp - Dreamweaver's medical diagnosis. 

Dreamweaver is my wife, my lover, my best friend. We have known each other since 2000, and were friends for years before we ever fell in love. We have been together as a couple for nine years come this August. It has been quite a roller coaster ride, with unexpected twists and turns every step of the way...and we have come through every single up and down, storm and disaster, still together, still in love, still death do us part, and beyond, if we have anything to say about it. 

We were friends before we ever fell in love. We were both in relationships with other people, way back then. We both survived the crash of relationships that we believed at the time were forever. We went through a break up of our own early on, and both realized that we didn't want to live without the other in our lives. We've been inseparable ever since. She's the fiery, passionate one, I'm the laid back easygoing one - we form an amazing whole - we remain two strong independent individuals that together have formed something that is far greater than the sum of its parts. We're still ridiculously in love heading into our 9th year. She's held the heavy, difficult, burden of being the breadwinner, mostly, due to the fact that when the economy began its downhill slide, my art business dried up and vanished. I've picked myself up, and with her encouragement and dreams, gone back to school to forge a new career. She has seen me through medical issues, as I have had my right hip replaced, and I've been there for her as she also returned to school for a second - or perhaps third - career herself. We find joy everyday in each other's company.

And there have been things she has struggled with all these years we've been together that have indicated, subtly, that something was wrong. Fatigue, aching, bone jarring chronic fatigue. Constant struggles off and on with diarrhea, with insomnia, irritability, susceptibility to illness and the flu, and muscle aches and unexplained nausea...all of it subtle, all of it off again and on again, good years and bad years. She's struggled with having any energy at all, with having virtually no social life because she just hasn't felt up to it. We've never had an explanation for it, never put all the pieces together. And in late February/early March of this year, she mentioned to the Doctor on staff where she works about the fatigue, inquiring if maybe she had Chronic Fatigue Syndrome, perhaps related to a major illness when she was a teenager. Further inquires turned up that no, not Chronic Fatigue Syndrome - rather she had been diagnosed back then with Mononucleosis and Hepatitis B and hospitalized, weak and jaundiced, only hours before she would have died of an enlarged spleen about to rupture. Her story is a complex and often horrifying one - her mother was a Paranoid Schizophrenic with Hallucinations, who ignored and neglected her daughter all through Dreamweaver's childhood and teenage years. Medical neglect nearly killed her that time, and further cost her ability to graduate as she continued to be weak, jaundiced and struggled to simply rise from her bed over the following year. No one seemed to understand what was going on...but it was the 80's, and Hepatitis B was assumed to be something you caught and got over, not like the dreaded Hepatitis C, that is chronic and fatal. 

Unfortunately, Hepatitis B CAN BECOME chronic, particularly in company with Mono, and other complications, and if it is chronic, it becomes in many ways indistinguishable from the Hepatitis C version with severe quality of life issues and an eventual 40% mortality rate. Her Doctor at work took one look and after much discussion, scheduled tests for her liver and other things, fearing major damage. Liver cancer is a real risk for people struggling with Hepatitis, and he was very alarmed, given that she clearly has the Chronic variety of Hepatitis B. Every symptom I listed above, that has plagued her and exhausted her? All are symptom's of Chronic Hepatitis B. 

We were stunned. We were frightened and scared and completely rattled. I remember getting off the phone with her at one point shortly after the Doctor had put together what was going on, and just sitting here with tears running down my face, and my heart breaking. I felt totally helpless and totally stunned. 
We struggled to be strong for each other, we turned to our faiths and our friends for support. We ran through every emotional gamut you can think of, waiting for those tests to come back. Its a chronic illness they tell you - you can live 20 - 30 years with difficult symptoms and quality of life issues, yes, but you can live - the fatal complications tend to kick in at the end, they say...DREAMWEAVER'S ALREADY HAD IT FOR THIRTY YEARS! We were severely spooked. Her fatigue and exhaustion and the rest of the symptomatic bucket list (plus a few I didn't add) up there have been getting worse and worse this year. Damn it, we intend to grow old together, not have our time together cut short by something like this - the plea, the terror, the darkest fear of any couple who are one heart, one soul, in two bodies, one flesh in marriage and love. 

And after about 3 weeks or so of endless agonizing, nail biting anxiety, the tests came back in with good news. Dreamweaver certainly has the chronic quality of life issues, but her liver and other concerns, with some small abnormalities, fall within the range of normal and no major damage at this point in her life. The relief was almost as stunning and hard to wrap our brains around as the possibility of major moral damage and threat. And left us washed up, after much rejoicing, thanksgiving and relief, on the odd shores of "NOW what do we do?!?!?" 

What can we do? There is no real cure for this stuff - there is a treatment - hideously expensive treatment that can put it in remission, that you aren't eligible for unless you are in a last ditch tail end situation, and the treatment is almost as bad as the illness in terms of side effects and dangers. So that's out, she's no where near in bad enough shape to justify that, we have no insurance and frankly, the treatments as scary as the Hepatitis is. We have found that there are things we can do in terms of diet that can help - which we ironically had already instituted unknowing, when months ago, we changed how we were eating and got off the fast food, etc. Thank goodness for that! 

And it has helped to put a name to it, a face. We know now that there is a real Problem. That the fatigue and nausea, and irritability and exhaustion, and insomnia and depression all have a very real medical reason. Its no longer some unexplainable shadow we could not understand. And that has given us the ability to cope, better. We try to protect Dreamweaver's times to rest, we can now say to friends, sorry, there's a real reason, we, or she's not going to make it to whatever's going on. If we do decide to do something, we make sure there is rest and recovery time. When she struggles with depression and irritability, we now know WHY some of it is occurring, and can cope with it, lessen it, do things that ease it. Its still not easy. We're still only just beginning to figure out how to live with this, how to cope, how to rise above it, in real and meaningful ways. 

We have our goals, and a future in mind, a home someday in the Pacific Northwest, with perhaps an orchard and chickens and goats - making our own goat's cheese and harvesting apples and pecans. That dream more than ever now is not on hold - we are organizing and working towards it with all our dreams and talents, and vision. We have been brushed by a shadow...and it is the shadow that comes to all, who dare to love what death can touch. We managed to move forward, and despite complications and quality of life issues, we intend to LIVE! 

And I love her more now than ever before, seeing her strength and courage as she gets up everyday in the face of this. I do everything I can think of to help her, to ease her, to carry as much of the load as I can (which is not near as much as I dammit, want to, due to my own current physical limitations!). She is my heart, and I treasure every moment with her, every heart beat, every breathe we take together in this life. And I always have, and I always will. 

So that was one of the main things that knocked me off my balance at the beginning of the year...and for me has been perhaps the biggest, scariest one. And it was hard to try to sit down and even begin to write about it, it was too close, too big, too scary while it was going on. For awhile there, there were no handles to grab to get a grip and try to process it, to find the brakes on it...and my blog fell silent. 

Just in time for the next crisis in that list at the beginning of this blog post to hit. And the next...and the next. 

I think you can see why I've been away for a bit. 

Its good to be back. 

I'll write some more tomorrow. 

Blessed Be!