It Is What It Is; Almost By Definition

So I don't know how to express this - so I am just gonna let it fall out. I have been alone quite a lot since going to the hospital in February. Being alone as a sick person is not unusual it is in fact the norm most of the time. When you are sick you spend a lot of time on your own by yourself. You are alone in the hospital, you are alone at home, and now even when I am out in the world I am still alone; alien to the rest of the world around me. This last crisis of illness has been particulary hard, in terms of the loneliness factor. It was arguably one of the more difficult medical hurdles to overcome in the past few years and the treatment was unpleasant in the best moments and really damn painful most days. 

Just got out of ICU with second case of Sepsis,
I spent little over 4 weeks in the hospital and then
another 20 months in home nursing care.

I have had serious sepsis 3 times now and each time it kills off a part of me, the first time it took my intestines and my marriage, the second bout took a gaping whole in the muscles of my abdominal wall and my dreams, this time we were scared it would take my heart valves not so far it may only be a kidney or so. I don't know all this bout will be lost but I know part of my souls has gone along with it. This bout has been hard And I was and am alone a lot. I have Ellie of course, my service dog and trust me if not for her I would have gone crazy pounded my head against doors (and if I did that a little she is not gonna tell you). Ellie has been the unconditional love wrapped in fur that has given me reason to go through one more day. She is on many occasions the tether to me to stay in this fight. During this infection sepsis craziness I began a slow, stumbling melt down into a really dark hole.

In recovery from Something -
you start to loose count

It happens, my therapist says so. It happens, you get close to death medically and you think about it, you think about it a lot, you calculate the medical bills, if it would better if you were not here making more medical bills and you debate which is better to be here or just to slide under the waves. It happens, it is normal, and it is part of the processing of being really sick; and it sucks. I am a positive person, considering the amount of medical crisis I have been riding shotgun down the avalanche for during the past say 15 years, I tend to classify myself as really freaking strong and positive. 

Ellie and I in the hospital: heaving her with
me is how I get through it all

But as much as I long to be a walking motivational poster, or wise sick person who em parts the wisdom that only comes from standing on the edge of the knife over the abyss; I have my bad days too. I have more cracks in my armor than can ever be repaired and wholes in my soul which are slowly filling with the puddles of sorrow.

Lately I have noticed I don't feel like I fit in anywhere any longer, like I have been sick too long to be normal. Walking around with a rollingIV pump does not do much for the fitting in part and the stares and questions I get if I manage to walk into a Safeway are all pretty invasive and demoralizing. Everyone stares, I am used to that even without my little rolling Iv pump - cause everyone stare with me with Ellie. Only now they don't ask if I am training her - they can tell that she is my service dog, my illness is in no way invisible. So the staring is a little different, it is more filled with pity and even suspicion some times. Mother's pul their children away and to the far side of the soup aisle squeezing their little bodies up against the cans scraping their little faces along the campbell's line up as they try and side step by single file as far from me as possible just in case my terminal might rub off on them. One poor little girl who really wanted to pet Ellie got yanked into last week by her mom who screeched that is a service dog for a really sick person you cannot touch it. I just stood there and let the egg of that comment run slowly down my face and splatter on the floor in front of us. 

One of my first first really big hospital stays for yet another
bowel blockage,it was two day before Valentine's Day
and Jeff brought me this huge flaming heart ballon that
sang Hot Stuff every time you hit or moved it. At first it made me
resemble a parade float but it came in handy when the
morphine made me start hallucinating on day 3 and I kept trying
to escape. It is hard to get away when you walk like a snail
with a giant pole and a flaming ballon that sings hot stuff.
It is no a tradition for me to get singing balloons in the hospital
always tied to my IV poles.

We have had visitors, and that is nice and hard sometimes, because I don't have much energy; so I get tired and don't want to be rude and say I need to go lie down. But more so I just don't feel like I belong in the world of the living much any more. I can handle the isolated run to a doctor's office, that has a real purpose and I still fit in those places. The trip to walk to the yogurt aisle of Safeway, is usually more for Ellie so she can feel like she worked today - or at least that is how I work myself up to do it is for her. Cause if I keep forced on getting her in and through it then I don't have to see the stares and pity and fear. I just feel like the is not a spot for me in the world out there any more, I know that sounds weird . . . but it is what I am wrestling with these days. I have been down and out of it for nearly 5 months now and by all accounts I got at least a few weeks of slow recovery from bed rest to go. by all accounts this last medical crisis has been tough on me and prolly more so on Jeff. 

Ellie and I do CBT breathing exercises and
meditations to help cope with the pain

I used to be a highly social person - I am the type that recharges by being around and interacting with and talking to people. but hers of illness have changed that in me. Because to be sick is to be alone it is just what happens. So my battery does not recharge much any more, that battery of my soul that got it's spark from laughing with others and telling stories and being in the social action. that part of me is turning inside out, I am not experiencing panic attacks when I go out and I am around crowds of people. I want to crawl inside myself and pull my eyelids shut like the rain flies on a tent. 

Ellie is a damn good service dog and one of the reasons I am still here:
Sometimes we we just rest.

I get anxious around people now, nervous when they approach and I back away when they ask about my dog or my pump or what ever. and the whole while I feel like I have unplugged from myself and I am hovering over looking down on the whole scene from across the room watching my disassociated body moves through space and I float behind in this invisible version of myself as a parade float. Maybe it is because I don't seem to have a purpose other than get well, ok I am working on that I am working to get well, then what I will just have another medical thing and I will have to get well again. it all seems so weird, so foreign, so not me.

Me going through a 6 hour Iron infusion. this was my first major
 iron infusion after learning that my lack of absorbing Iron or B or
any vitamin for that mat err was not happening in my GI Tract.
I had been hospital led 2 weeks earlier for a hemoglobin of 5.8.
I also found out that the years of vitamin deficiency had damaged
my bone marrow so I was having great difficulty making blood.
When you receive Iron is is stored in your bone marrow and makes
the marrow swell inside your bones. This is why large dosages of
IV Iron can cause bone pain. At this point the doctors were giving
me mega doses, 650ml.On the first couple rounds of this I was
fine because with the loss of bone marrow my surviving marrow
had room to sweep inside my bones.  After I had a successful
stem cell transplant which helped me restore some of my lost
bone marrow, the next round of mega dose iron made the new larger
quantity of marrow swell inside my bones and it caused intense
agonizing pain as the marrow swelled and pushed on the
bones it causing the bones that hold the major deposits of
marrow to fracture from the inside out

I started all of this my saying I don't know what to say and I still don't, and much less do I understand why I feel so alien from the world. I just do, it is what it is; almost by definition.

Let me make clear that this is not a condemnation of not getting enough visitors or anything like that. Nor is this a pity me plea, or a cry out for people to come rushing to the house to cheer me up, it is not anything like that. And know that if people did run to my house I would most likely hide from you, too scared and weirded out to come out to see you. This is just the stark realization that I don't fit anywhere comfortably right now and that feels real empty and weird and alien and I don't know how else to explain it.

My enthusiasm for being told I would spend the summer in a body brace
cast thing to help my bones heals after mega doses of iron and swelling bone
marrow fractured them from the inside.  

Ellie doing what she does best, making the pain less and the love more.