What stress can do.

Here’s an update on my housing situation.  My family is against me leaving the agency that can no longer help  support me in my apartment, instead of finding an agency that would continue helping me in my current or slightly bigger and appealing apartment.    I grudgingly agreed to move into a house with another person who is in the same boat I find myself.

in July a possible  House came on the radar .  Both my future housemate and I were summoned to take a look at the house. It was rather a pointless trip.  We did not have a key to the house.  All we were able to do was peer inside through the windows, and that can be hard to do for a couple of people in wheelchairs.  My sister who drove me to the house was able to stand me up so I could peer inside. However, that did not give me a good feel for the house. My gut feeling was that the house was way too small.  It had a huge backyard, though.  We could have had great backyard parties!

A little after the possible house scare, my back started prickling.  I had my personal assistants check my back numerous of times. The best they could come with was that I had some sort of rash. The pain persisted.  Finally it dawned on me at the very same time one of my personal assistants said, “You know you could have Shingles.”

Shingles are brought on by stress.  Huh, the very idea of a life changing event brought on my second bought of Shingles.  Awesome, not!  Luckily it stayed localized to my back, and was a very mild case.  However, I stayed home and away from the mass crowd for a few weeks, because while I could not pass Shingles along,  I could pass the Chickenpox to someone.  I had cabin fever something fierce!

My doctor wrote me a prescription for acyclovir,  an antiviral medication.   It kept the Shingles from spreading across  my body. When I went to pick up the prescription, I was startled to learn I was supposed to take five doses a day.  i have a gag reflex a mile long, and taking 5 doses a day for ten days seemed like climbing Mt.  Everest!   I specifically asked the pharmacist how solvent the pills were.   He assured me I would be able to swallow the pill before it would dissolve  in my mouth. I believed him.

I waited until the next morning to start the medication preferring not to get up twice to take the dreaded pills.   The second the pill hit my mouth, it started melting, quickly turning into a frothy goo that I could neither swallow or spit out very effectively. The First image that ran through my mind was climbing on top of the pharmacy counter and strangling the pharmacist. I am not typically a violent person, but I strongly felt he deserved some sort of punishment!

I still had 49 pills I need to gag down. As luck would have it, just that week I discovered a Crystal Lite drink mix I actually liked, pomegranate. I had my personal assistants dissolve the pills into the drink, and slugged it down as fast as I could.   Totally ruined the only Crystal Lite beverage I will ever drink for life, but I accomplished what I had to.

I suppose it would do my heart good if I went back to the the pharmacist, and explained my experience with the acyclovir.  perhaps it would save someone undue discomfort.

The Long, Long Healing Process

So, I came home from ER wearing no splint or any subscriptions for my pain. Not that I ever want to take painkillers. I could be in unbearable pain, and refuse to take an aspirin.

I have a couple of  aversions to taking any type of medicine:

1.  I am afraid of taking any medicine that might be harmful to my body.

And 2.  I have a terrible gag reflex that makes it difficult to swallow medicine.  So much so that quite often it is simply easier to live with the pain.

The spastic side of my CP was kicking into overdrive.  Having no bandage on my finger meant I had to stabilize my left hand, so that I wouldn’t keep banging my finger on things.  My only means of stabilizing my left hand was by using my right hand. I would grab a hold of my left thumb, and let my fingers rest on top of  the back of my right hand. When that position began to ache, I would let go of my thumb and grab my two little fingers, and again rest my fingers on the back of my right hand.  When that hold got tiresome, I would press my left hand flat on my chest, and hold it there with my right hand. Eventually, that position became unbearable, and I would start that whole sequence of positions all over again.

My left arm and hand were behaving like two completely foreign body parts.   Before my unfortunate accident with the keyguard, if I was concentrating on my work  or simply reading, I would find my left arm and hand curled up near my armpit.  I would easily bat it down with my right hand and place  my left hand between my thighs until it relaxed, only then could I go back to what I was doing. However, after the accident, my arm and hand are impossible to relax.   There was just no way to relax the arm;, no matter what tactic i used.

By the end of day three or four,  I relented, and started taking one Ibuprofen at a time. By day six,  I was taking two at a time,  and was enjoying the sweet feel of relief when the ibuprofen kicked in. It was never enough to deaden the pain, but at least I was a little more calmer.

I lost massive amounts of sleep.  I just could not relax no matter what I tried.   Usually if I have trouble sleeping I will physically get out of bed and wander around a bit, or sit on the edge of the bed helps relive some pent up energy, and not even that helped. What I really needed to do was  to stretch out my left arm.  If I succeeded in getting the arm nicely straightened, it folded back  up on itself again once I laid down.  It was very maddening! Most nights I had to  tell myself not  to leave the edge of the bed, because I was so tired I just knew  I would fallen and further injured myself.

It was the hardest thing for me to grasp that in  order to heal, I need to do nothing but relax.  The only way I can fully relax is by watching TV.  So, I watch shows that made me laugh like, 30 Rock, Raising  Hope,  My Name Is Earl, and any show that took my mind off the pain.  Thank goodness I had just purchased a Roku player which allows me to stream Netflix and recent shows on Hulu.  Without that distraction, I don’t know what I would have done, after all laughter is the best medicine!

You Should Consider Who May Be Listening When You Open Your Mouth

I am going to take a brief intermission from my finger issues to share an incident I can not got out of my head.

This past weekend the Portland area was plagued with 90 plus degree weather. Heat and I do not get along, so I made plans to go somewhere with air conditioning.  My place of choice was Barns and  Noble in the mall. I figured we could find somewhere to cop-a-squat and read for a few hours. Turns out, lots of people had that same idea, for there was not many seats available, not that I needed one (I have a seat wherever I go), but I wanted my PA to have somewhere to sit.  It felt like we were in the parking lot  circling around hoping a car to abandon a space.

Finally, we found a table in the cafe.  Which begs me to ask the following question.  If you sit in a cafe, are you obligated to buy a drink or something to eat?  anyway we were not sitting at the table too long before a couple came along and sat at the table next to us. It was obviously a first date, because they were asking questions you  ask when you’re getting to know someone. I was all aglow thinking I could be witnessing a budding relationship?

I caught myself eavesdropping, I figured if by chance I’m unexpectedly asked on a date, I could take some notes from this couple.  However, I didn’t envision what happened next. The man was saying, “I’m in very good shape  for someone in mid-sixties. I would rather  be dead then be stuck in a wheelchair!”  Then he thought better of his comment, and started exaggeratedly looking about him to see if he had offended anyone. I was looking straight at him, and he looked EVERYWHERE but at me.  I felt totally invisible.

He had to have seen me there. I am hardy the kind of person who blends into my surroundings! I understand that everybody has the right to think and feel about things. I’m sure if the man had acknowledged my presence, and said “I’m sorry for my comment.”  I would have came away from the occurrence  with a different attitude.

I’m still trying to guess why he would ignore me. Do you think he was trying to get even for my eavesdropping?

In hindsight, I wish I had dramatically  flung my arm over my forehead and exclaimed, “Oh Lord, please take my soul now, because my life is not worth living from a wheelchair!”  Then collapsed in my wheelchair. Do you think he would have got the jist of my soliloquy?

The Trip to ER

The day after I messed up my finger, I had to be encouraged by my sister to get it checked out by my doctor. She had a good point; I had to know if I broke my finger .or not. My doctor’s office could not fit me in until the next week.. They said i should go to Urgent Care.

I had my PA call Urgent Care, to verify that they took my insurance, they did.  Next my PA asked if we could borrow a van from Community Inclusion.  Since it was both the end of the day, and my PA said I had Hurt my finger and needed to have it checked out,  we got the van.  We got to Urgent Care.  Gave them my insurance  info, and was just settling in to fill  out the  paperwork.  We were stopped  about 30 seconds later.   Turns out Urgent Care could not help me because,   I am covered by two insurances.   They said I should go to ER.   As I was exiting the building I exclaimed that it was B S! For once, I hoped they understood my sediments,  because I was in pain, and all I wanted was to be helped!

Fifteen minutes later, we arrived at ER.  I was checked in, ushered into the intake room to the right of the the reception desk, where they got a better idea of what my problem was, and took my vitals.  I dislike having my blood pressure taken.  My CP kicks  into overdrive and makes it sometimes hard to get a clear reading .  Well, my body was exceptionally tweaked out on this day, and before the nurse was satisfied with a reading, my arm must have been squeezed at least five times.   I thought my arm was going to pop  before the ordeal was over.  I was relieved when the cuff finally came off, and I was released  to the waiting room.

Thirty to forty minutes later, I was ushered into an exam room, where I waited another twenty or thirty minutes. At long last, the ER doctor came waltzing in. Of course, he took one look at my finger and said he wanted three x-rays taken. I groaned. a flashback into childhood, and being taped down to the x-ray table to help me stay still set me farther on edge.  As tensed as my left arm and hand were, getting decent e-rays would be a pain in the rear!

I wished my sister was with me. She’s the only person that knows how to get me to relax. What’s more, she knows how to get my wrist to relax. The x-ray experience would have been a snap if she were there.

Twenty  or thirty  minutes later, the x-ray technician came to escort me to his domain. After my communication device was removed from my power chair, and a lead apron was added to my attire;  the x-ray dude tried to place my left hand on the  exposure table. My hand was curled up in my wrist, and when my finger hit the table a jolt of pain shot through it.

He told me to extend my wrist. My PA explained that would not be possible.  it was like he didn’t hear or understood her, for he kept on asking me to extend my wrist. It reminded me of the times when my dad told me repeatedly to relax.  I would swear each time he said relax his eyes grew larger as if he could will my body into submission, which irritated me to no end!

Finally I felt like I had to show the dude that I understood him. I extended my right wrist. His eyes grew large with hope, and he asked me if that was the hand that my injured finger was on. I said no in as flat of a tone as I could muster. However, I am sure my eyes were flashing fire.  (I have been told on occasion that my eyes can shoot off a number of evil looks. I guess it’s a family trait I am blessed with).

Funny, x-ray dude became creative after that.   He found a foam wedge to rest my hand on.  As my PA was stabilizing my arm with just a touch of her hand, and while I was taking deep breaths, x-ray was happily doing his job.  unfortunately, he could not get a clear image of the tip of my finger,     which at times hurts more then the knuckle. X-ray dude walked us back to the exam room.

Another Nurse came in and took my vitals, again.  I wanted to say, “Yep, I am still alive, can’t we just leave it at that!   Twenty  minutes later,  the doctor was back before me.  He said the finger was not broken.  I had just sprang it badly.  He was not going to  splint it up, because he thought my body fight against it.  I thought he just didn’t want to go through the hassle of casting my hand. I think if my sister had been there, she could have argued the point, and won. I have no idea how my hand would have taken to the cast, but I would like to think that it would have relaxed given time.

I ask you, did I go through all that hassle for nothing? At least, I know my finger is not broken, and I am giving you all a good glimpse of what a person with a disability goes through to get health care.  I think there is a burning question here.  Like,  how much training does the medical community as a whole have in caring for people who have disabilities?

I Did Something Dumb

I hurt myself royally a month ago!     I had the lower half of the keyguard down so I could see the full screen of the Eco.  (For those of you who don’t know, the Eco is my communication device which basically looks like a large Ipad. A keyguard is a grid which covers the touchscreen so that I have something to rest my hand on, allowing me to type just the right key without pressing.too many keys.). The keyguard is in two parts so that when I want to view the whole screen, I can flip either half of the keyguard aside.)  I was also sitting in my powerchair,which put me several inches higher to my kitchen table, then when I’m in my manual.

Suddenly I felt my left index finger slide into a hole in the keyguard, up to my knuckle.  I panicked,  and the next thing I knew I was wrenching the finger out of the keyguard.  As opposed to calling for help, or ripping the keyguard off,   I heard a crack, i am not sure if it was my finger or the keyguard.  Within the hour the finger had swelled, within two to three hours it the a gross shade of black and blue.  I’m trying in vain to keep my left hand still.  My pain level is a high seven.

Having a injury when you have Cerebral Palsy is ten times harder, because my body zeros in on the pain.   Relaxing becomes an intense game of injury verses body.  Many moons ago,  my physical therapist would have me practice relaxing by having me lay down for a half hour,  just relaxing .It was the hardest thing I had to do, and I dreaded those sessions! Now I wish I had mastered the art of relaxing!

Nothing Has happened!

I should give you all an update on my housing situation.   Well, nothing  has changed.  I am still living in my apartment with no prospects of moving any time soon. Of course, I am well aware that the last statement could change at any moment!

In December, when no new developments had happened, and I was stressed  out to the max, (I mean who in their right mind wouldn’t be freaked out knowing that their home life was in jeopardy?)  I wrote to the people in charge of  finding a suitable living situation for me and the gentleman whom I barely know.  In the letter I gave them a timetable of some questions I wanted answered before I could commit to sharing a home with the person in question.

The questions were as followed:

1.  Could I keep my Supported Living status?

2.  Could I keep my Section 8 Housing Stipend?

3.  How much care does the gentleman need?

My letter was never answered.  I am stunned that the letter failed to generate a response I thought at the very least the timetable would produce some needed forward motion.  instead, it just fizzled seemingly as soon as I sent the email.  I didn’t know what to do next. If I became the squeaky wheel,  where would that land me?  In a home where I would flourish, or in some place that I resented, and wishing I had fought like heck to come up with a solution that I could live with.

I am ashamed To say that I feared I wouldn’t keep my backbone straight when I most needed to, and cave in to something because I felt it was  the only option I had. I have to hope and pray that I will sense  some define presence that gives me a strong feeling of making the right decision.

Oh, I would be remiss if I I didn’t add the following bit of  information.   In February a house popped up on the radar. It was about seven blocks from where I’m currently living. Here is the kicker.  Before I could arrange a time to see the house, someone had already snatched it.    Lesson learned!  The next time a possible house is in question, I will call around to my friends and family until I find someone who can take me to see the house.

Draft sa

Between A Rock and A Hard place

On May twenty-seventh, by phone call, I was told I had to cut two hours a day of my 24 hour care. The two hour alone time went into effect that following Monday. I wrote an email, of course, with all my concerns, but the email was more about my feelings as to how it was brought to my attention. I made a snap-ish decision based on my comfort level. I went with taking the two hours at night, since I tend to have an active bladder in the mornings! But after I had time for the new schedule to sink in, a lot things started popping into my head. I would have to be more regular about when I eat my meals. Regulate when I drink. Plan to go to no more late night parties, concerts, movies, or plays. Unless I go with friends or family. In general, I will need to be more vigilant about how I use my time with my PA’s. I changed the two hour time block, to a hour one each end of the day. In case you haven’t added up the hours being cut, it adds up to fourteen hours per week. This is doable, I will make lemonade out of the lemons

Not more than two weeks into my “new normal” I got a call from the lead supported living manager saying she wanted to meet with me, along with my sister and another bigwig at the agency that supports me. She wanted to have the meeting on Thursday, but was thrilled to tell her that I work Thursdays! At first, I just thought they were coming to talk about my email, however, I knew it wasn’t what the meeting was solely about. In my gut of guts, I could see the axe lowering on my neck! Long story cut short, this agency has been eating $87,000 over the top of the monies I get from the state and federal budget. They have been eating the money because my sister is a loyal employee and they didn’t want to lose me. $87,000! I want to puke every time I think about that kind of money being spent on my care! Of course, the agency can no longer justify shelling out that money on me. SO, I have big decisions to make, and set into action, by August first! Lots of asinine and horrid suggestions were thrown on the visionary table for me to “ponder” over.

Here are my options so far. Move to another agency with a supported living program. But with everybody facing budget cuts, what are the chances another agency will take me into their program? I could downsize everything I own and move back into a group home. Not a thrilling option! Really not an option, unless it’s something totally appealing, which is very unlikely.

Nobody wants me to lose my apartment, however, this means I will have to stretch myself beyond what I ever dreamed I could do. Like staying alone eight hours at night, and installing a bidet. Hand and hand with the bidet idea, I would wear a gown that would spread open as a person sits down. In theory I would go commando at night. If I should have the need to use the toilet at night, I could transfer myself onto the thrown, do my business, use the bidet to clean myself, probably sit there to drip dry for a spell, and transfer myself twice more before getting into bed. When I calmly reminded them of the fact that most home accidents happen in the bathroom, they replied that they knew, and would equip with a “help I have fallen, and I can’t get up” necklace. Oh, so fancy! Fat chance the necklace would do me any good if I fall, crack my skull, and bleed to death. it’s as if the agency is banking on me getting hurt, and possibly becoming further disabled. If that’s the case,… Never mind, if I write that thought, it might come to fruition, and I wouldn’t be me anymore!

Actually, What it all comes down to, by August first, they’re hoping to trim 14 hours of paid PA supports from the day. Eight or so hours at night, and four hours during the day in addition to the two they have already removed earlier this month.

They said they were willing to buy technology that would increase independence, as opposed to having human PA’s. I was also encouraged to look at other agencies.

The way supportive living was set up to run in this agency, was to have the person going into the program interview an already pre-screened person that was interested in the job. If the two people thought they could live together, the live-in would get a flat stipend each month, live rent and utilities free, get one evening a week off, and one weekend per month off. You’re smart readers, can you think of some problems that might arise from this type of living environment? Regardless of its obvious deficiencies, I have been open to this situation for years and yet have gone four years without a person willing to fill this live-in position. Now the agency has given me about six weeks notice to find a solution and are pretending that this is one of the options.

Okay now, at Tuesdays meeting, lots of ideas were tossed at me. The following idea is just really asinine! There is a long standing relationship between a woman and her live-in. Let me say that I think most people would find it taxing to live with the person served.. With this in mind, the idea would be to ask each woman separately if they would be willing to forgo the apartment and the life they have built together to move into a bigger place, and be open to live with a man who is also in the program. If the women and the gentleman agree to do this, and if the agency’s accountant can get the numbers to work, the agency would buy a duplex. The three would live together, and I would live on the other side. There are a lot of ifs in this plan! I think my chances of becoming a millionaire are greater then this duplex idea! I say don’t mess with a good relationship!

I know what is happening here! I’m not a fool! They gave me all these unrealistic options, in the hopes I will pick the option that is best for them This is the oldest tactic in the book for dealing with disabilities! Do I have the strength to fight for my independence? .

No, I’m not dreaming. I just asked my PA to pinch me, and I didn’t wake up!

Please comment .orgif you have any ideas for how to deal with this situation. Its imperative that I do something very soon, before I am forced out of the supports that enable my independence.