Monday, January 24, 2011

When the Doctor Says It's Time to Stop Fighting My Illnesses

It's a tough question to ask ones self - a tough question to face.  Last week was hell. Mid-week I received 8 puncture bites from my dog. I came out of it black and blue and bruised half-way up my arm.  I should have realized it would effect my lupus but I honestly didn't think about it.  Over the next two days both hands swelled up and I was so tired I couldn't get out of bed.  I knew my dog had its rabies shots so I wasn't worried about that.  I was worried about the general dirtiness of a dogs mouth and the fact that I have very little left of an autoimmune system.  Then the forgetfulness kicked in and I began missing medications and insulin.  By Thursday night I couldn't get out of bed without help and my husband had to stay home from work to take care of me. My husband and I know the drill when it comes to lupus. We went back over the medications I missed, double checked my blood sugar listings and times I'd remembered to take my insulin. We caught everything up and by tonight (Saturday) I was able to get up and moving a bit. I finally kept a small amount of food inside.

Now what does this have to do with anything? Well this past August one of my way too many doctors said I was refusing to accept that my health was deteriorating and the many sicknesses were related to that deterioration. We had quite a fight actually and it later turned out I was yet again seriously ill but not due to deterioration. It was due to respiratory failure. Now I know the majority of my doctors have placed me on their "I can't fix her" list. If you've ever been on that list you know the one tell tale sign - the doctor says "I'll see you in six months." This basically translates to "I'll refill your scripts but I don't expect to see you again unless you're dying. Have a nice day." Apparently there are few things more frustrating to a doctor than a patient that just won't get well. Maybe it screws up their batting average or something.

Now on the one hand society tells us "Do not go gently into that good night. Rage, rage against the dying of the light" which I've been doing since the day I got my first diagnosis. But now that most of my doctors have placed me on their own personal "can't do nothin for her" list its become about my refusal to accept my own deterioration? Arghhh... How do you fight when your doctor doesn't think you should be fighting anymore? When is it time to give up?

Thursday, January 20, 2011

This Time My Dog Drew Blood

It's 2:30AM and I'm deeply confused. This afternoon when I tried to stop my Lhasa Apso Herman from running to front door when the doorbell was rung he turned on me and bite me in 8 places on my hands so badly blood was running down my fingers. My wrist has swelled up and turned black and blue. Now if you've been following my blog you know this is not the first time I've had this problem but never to this extent. I guess its been slowly building up as each time he's attacked me its worse. The dog trainer I've worked with before emailed me a "bite scale" to access the level of possible change. The scale goes up to 5 and Herman teeters on the edges of 3-4. That means its possible to change his biting behavior but it will require extensive work on my part.

Its so hard to hard to understand how the quiet ball of fluff snoring beside me on the bed savaged me the way he did earlier in the day.  I try to keep the fact that he's an animal first in front of me at all times but he's also my companion. He sleeps beside me and goes wherever I go in the house. Now I can see that behaviors I thought were affection on his part were actually dominance.  He must go up the stairs ahead of me always. Must eat when and what I eat, refuses to remain house broken. Whenever he's not permitted to do what he wants he begins with a low warning growl.  If I ignore it and continue my behavior things escalate. The problem with today was there was no warning except to say "Let me go now or I'm going to bite you." 

Anyway now I'm at the point of trying to change this behavior or have him put down.  My hands are badly swollen and bruised and since the majority of the bites are on the palm of my left hand I can't close it.  I cry every time I look at him which makes me feel really stupid.  The Dog Whisperer says that dogs are initially a blank slate so any inappropriate behaviors that occur are the fault of the owner not the dog. That idea drives me nuts.  So I'll see what the dog trainer wants me to do and take it from there.  Meanwhile, he lies sleeping peacefully beside me and I'm sitting here so broke up I can't sleep.  Isn't it ironic?

Tuesday, January 18, 2011

The Grace of Peace

I marvel at the grace of peace. It comes to me rarely as I'm sure it does for most survivors of child abuse. The darker memories are what usually haunt me late at night/early in the morning. Memories of a drunken parent who'd rather lock me in a crate in the cold cellar than tuck me into bed on a cold winter's night. It's 4:30AM and I'm in my quilt room listening to Enya's music. It is as if the room has become something out of Narnia - a closet to step through into a completely changed room from the dark, depressing prison it was last year. It was a place of sorrow, sadness, pain, hopelessness and believed impeding death. A friend who had visited last yr. when I was so ill stopped by yesterday, sat down, smiled then said the entire vibe of the room had been replaced with joy.  She explained the true concept of feng shui and that everything has energy. Where something sits, from a box to a chair and how its used often dictates how the energy disperses. If ever there was proof of this its my quilting room. Did I mention I just got access to the room across the hall as my own too? Rooms of Ones Own?  I'm sure it's not what Virginia Woolf had in mind but since I don't have the money I'll take the space. 

I finally gave away the treadmill that's been taking up the majority of space in the small bedroom my daughter occupied many childhood years ago.  The treadmill had become an expensive clothes hanger combination resting place for the cats. The room itself had become that place every home has called "throw it in there and we'll sort it out later."  Later never seemed to come and the room just kept filling up.  Well in keeping with my motto "If I haven't used it in a year donate it or throw it away" I've been getting rid of things right and left.  The amount of space that's opening up is positively astonishing.  This tiny home I have hated for so long feels like a haven of peace and calm - no longer home crap home.  Of course, since I swing from one extreme to another I now rarely want to leave my "safe" house.  Its been 3 weeks since I last went out and then it was only for a doctor's appt.  My therapist feels this may not be healthy.  My friend says if I believe this is right for me at this time in my life then go with it. I think I'll go with my friend,s statement despite having to pay the therapist for her advice.  It's 5:30AM now and the snow is coming down harder.  This means I having a true and proper excuse for not leaving the house today.  It's my husband's day off so we can curl up under the blankets and inhale the comfort of each others presence.  Sleeping beside each other calms us and helps us feel safe. It is an abuse survivor thing for both of us, this need to feel safe in bed.  It is a gift we give to each other.


Monday, January 17, 2011

It's My World and I'm Stuck In In

Leaving the house has been a struggle for me since my stroke 4 years. The stroke left me with right-side weakness, verbal aphasia (using the wrong word when I speak- like saying door when I mean desk), and worse of all, the need to wear an adult diaper 24/7. I know I’m fortunate to be able to walk, with assistance, and still drive. Leaving the house from December through April is just too hard – between rain, cold, snow and the general miserablness of the weather and how it all affects my body. I have to carry the 10lb. battery for my scooter out to my van because it may freeze at night. It’s now been 3 weeks since I left the house for anything other than a doctor’s appointment. I start out each day with the intention to leave the house and run an errand, pick up something the house needs from Home Depot; the usual stuff able-bodied people do every day. I’m not agoraphobic. I just can’t bring myself to do everything it takes to leave the house because it’s like planning to go to war. I bought a large and I do mean large purple shoulder bag shortly after the stroke. I figure purple and red are “I don’t give a damn” strength colors. I pack it with 2 bottles of water, 2 diapers, cell phone, note pad, several pens, a very large and heavy daybook full of doctor's addresses, day notes, business cards and anything else you can think of including tissues, medical file folders, information about medications and any other miscellaneous things that will help me feel safe out in the world. It can take up to a half-hour just to pack the bag. Then it’s time to get “me” ready. My physical difficulties cause me to go very slowly so that usually takes me 2 hours to shower, lotion up and get dressed so basically it takes about 3 hours altogether to get myself out the door and do an errand that may only take 15 minutes to go and do something. Ultimately I decide why bother? Wouldn’t you? A friend said I needed to decide what MY beliefs are. She didn’t mean religious beliefs but personal beliefs about why I think I still have do things my old able-bodied way. Why do I think I have to leave the house on a daily basis? I’m working hard on this business of reinventing myself. I’ve made it to the thinking hard about it stage.

Saturday, January 8, 2011

A Room Of One's Own

I have lived with men my entire adult life, since the age of 17.  I'm now 57. In that time, including raising two kids I have never had an entire room I could call my own. I recently saw, in a DIY magazine, how a woman could build a small shelf area in the kitchen for her laptop with equally small book shelves above it.  I've had many spaces within rooms that I shared with LOTS of other people. This means that whatever was on my desk was considered open to be used by anyone.  Clothes, makeup, books, papers, felt like the more important the thing was to me the more likely it would be taken without my permission. At one point my then husband made a beautiful little box just large enough to hold small things that mattered with a lock. The problem of space created many many screaming arguments in my home.

My children grew up and moved out.  I divorced my starter husband and moved on to husband number two - who I've been happily married to for 13 years. Somewhere in my many rambling blogs I may have mentioned that after my last hospitalization I was forced to move our bed into the living room so I didn't have to walk up and down the stairs constantly.  While I was in the hospital my wonderful son (its great when you finally reconcile with your adult children and they forgive all your parental mistakes.)  I'm saying this somewhat with tongue in cheek. He, my daughter-in-law and a friends son moved everything from the bedroom into the living room. I put my sleeper sofa out in front of my house with a sign saying FREE and it was gone in 1 hour!  At first I was really depressed. Only old really sick people slept in their living rooms. To be honest although I've lived in my house for over 25 years I've never liked it and at times have hated it. It has memories that make me want to run screaming into the night. I didn't put much energy into repairs,  upgrades, whatever. I hated the house and I let the house know it.  In retrospect I see now it totally reflected my depressed moods.

I never understood the whole feng shui thing. You put a chair down where it works best for you and that's that. But some massive kind of energy changed when we moved the bed into the living room. It started when I turned our former bedroom into a quilt studio.  I've been a quilter since childhood, being sent every summer to an older woman who would teach me various sewing technique including quilting, crocheting, knitting and even something called tatting.  I learned to stories of how quilts helped guide slaves to and through the underground railroad.  I had shelves and shelves of fabric, fabric in boxes, fabric stashed in closets. Suddenly I could put it all in one place. My sewing table, my cutting table and ironing space, the 100+ quilt books, I was able to bring everything, every ruler and template together.  I was able to raise the blinds all the way up which I could never do when it was a bedroom. Naked and open window don't work well together. I HAD A ROOM OF MY OWN!!!  Virgina Woolf was right. OK so it took me a very long time to get here and I don't have the money she said should go with the room but I now have TWO rooms. The small room across the hall has always been the "throw it in there and we'll deal with it later" room. A massive treadmill took up most of the room.  I used it as a clothes hanger.  It worked fine I just never used it.  Suddenly the cleaning woman asked if she  could have it and my only price was she had to get someone to take it away. It was gone in three days and there was this wonderful small space across the hall from the quilt room. I was able to move all my paperwork, bills and everything else that I felt was negatively effecting the quilt space into the little room.  I get the feng shui thing now. 

As my mood improved it seemed the rooms got lighter, brighter. I usually hate people who say things like this.  I consider them wimps who refuse to face the realities of life.  Life is bleak and the universe is just waiting to slam you when you least expect it. So you can imagine how odd I find these warm, fuzzy feelings.  Its just not me. Although it feels great I live in terror of these feelings just stopping when I adjust to all the anti-deps.  So to protect myself I figure the best thing to do is to keep the basic darkness inside me going.  This blog post started out talking about the gift of space.  The bottom line is my husband said he only needs enough space to sit with his lap top and he really means it.  Even after I dragged him all over the house demanding he tell me if this or that corner really mattered to him.  We've been married 13 years so I figure I'm totally free to bring out the crazy now and then.  He's helped me lug and lift boxes, tables, chairs to rearrange the rooms.  Since neither of us have particularly good backs its been a slow undertaking but we've finally moved everything around to where we want it.  Well to where "i" want it.  I'm off to do a bit of quilting.  After all its only 11pm.  Thanks for reading.