The Good, The Bad and The Ugly

Phil. 1:3


I have been wanting to write an update for days. It seems like when I sit down to the computer to write, my mind is so tired, I tend to fall asleep. I don't seem to have much time
or incentive or something to even go to the computer these days. I think it is because 1. I AM tired and 2. It hurts.

I have had a few phone calls and several emails asking how things are.... I really do love knowing you are concerned about us. That is a comforting blessing. I am sorry for not writing
more often....

Okay... the GOOD: Stan has moved his left arm slightly ON COMMAND the past two days!! Brian works it most evenings, and told me his dad moved the arm (shoulder to elbow area)
in towards his side twice at Brian's request. I asked him to do it for me yesterday, and he DID. This could be the beginning of something BIG!!

He has been complaining of pain in that arm and in his left leg lately...so there is some feeling returning!! I used to give him his BIG insulin shots on that side because it didn't hurt as
much. Now he hollars just as loud as the right side!!! PTL (funny thing to PTL over, huh!!)

The weather is absolutely gorgeous.... today I took him out on the deck in the wheelchair to enjoy the sun. I can't wait to play in the dirt!!!

Friends in Kansas sent us a 'ton' of 'diapers' and pads that were left over from their care session. What a blessing! (Dave and Judy Parry, for those who know them.)

Jean Houston and I enjoyed a really fun outing at Kathy and John's....Yummy dinner, super company, and fun evening of playing (and learning) two new games. Pete stayed with his dad.

Stan's headaches have improved and he has quit insisting I get some 'head on' to treat them.

My cousin Brenda and friend Nancy were in Anchorage on Tribal business...and we had a great visit. She also shared that she had torn a knee ligament and told me how the therapy
really was a great help in healing.

Stan is doing his whistling thing right now. It is kind of cute. He started whistling about two weeks ago. I don't remember him ever whistling before.

For a few weeks now the church has been 'piping' in Sunday School class, Wednesday night Bible study, and Sunday's worship service. The two classes are by conference call on
the phone. We can participate in the discussions, hear what others are saying, and really are enjoying being able to 'be' there. We are joined by a couple near Kotzebue and also a
traveling member who just drove thru Canada to Oregon. In fact, he called me for the correct time tonight or I would have missed the class, because I had forgotten what day it was!!
The worship service is by computer web cam...so we actually see and hear the service...and several people make sure to wave to us during the greeting time. That is so neat!! Thank
you all for your super efforts to include us!!

PTL... after being 'dumped' by the clinic from my wonderful doctor's list for several months.... she became available again...and I jumped at the opportunity to get reassigned to her.
Also, called Grace so she could get Katrina back on her list!!! Hallelujah!!

Kathy helped me hook up with Joe at the pharmacy and get the Texas cathetar and another device for Stan. Joe delivered them to me and gave me a very good deal.

We are brought communion each Sunday afternoon...and have wonderful fellowship along with it.


THE BAD: Stan was suffering with some pretty bad headaches last week. He kept insisting that Pete would go to the store and buy some 'Head-On' pain reliever. I tried to tell him I
couldn't just administer anything that wasn't doctor okayed...due to all the meds he is on.

I fell four weeks ago today and 'did something to my knee' as I fell. It twisted wierdly, and I could feel something happen. Since then I have had some pretty intense pain. I can walk...
it doesn't hurt to bear weight on it. I cannot bend it. When it gets bent on accident, the pain is pretty bad. For some reason, it aches (different than the bending pain, but in the
same area) when I lay down....so I haven't had much sleep for the duration. (Now you know why I said I was tired.) I did go to the doctor...but that seems to fall under 'the ugly.'

I have had an ongoing problem with my right ear for maybe 3 or 4 years.... It itches, weeps, gets infected and has pus, hurts like crazy, gets better.... cycles again... and again... and
again. I have had it looked at a few times, but usually by the time I get an appointment, it is better.... I have been given cortizone drops periodically that do help, but it just gets bad
again. It flared up recently while I was also having a bladder owie...so asked the doctor to check it out. She gave me a different kind of antibiotic drops... and the first time I used them,
I got the sensation of being plugged up and for several days felt like I couldn't hear out of the ear...so my doctor sent me to the ent clinic... I was there today, and the doctor vacuumed
out my ear (used a noisy machine that sucked out the 'debris.') Apparently I was so full of infection when I used the drops, they washed a lot of gunk down to the ear drum area...and I
was plugged up!! It wasn't really painful at the time, but the sensation of not hearing on the one side was uncomfortable. It is much better now, but a little weepy and a little itchy. He
gave me some new drops that should clear these things up. I sure hope so. The bladder owie got its last pill today, so hopefully that is okay now, too.

My windows are so dirty... I guess this could be put under all three categories.... I don't have much time or energy...but have decided to wash one a day, or a week, or a month. So far I
have three washed and do they ever look better!!

I haven't been able to really get the Texas cathetar to work yet, and the other device is a 'no go.'

I guess BAD would be the label for our losing the Home Health Care.... It also fits under ugly.... so 'stay tuned.'

Stan needs more attention to exercise... he is not very willing, and the kids do have jobs and family obligations that preclude as much help as needed. I need to work out a better
schedule, so those movements will return!! Andy lifted him up the other day so he actually felt his weight on his leg for the first time since the stroke. (I guess that should have been
under GOOD!)


The UGLY: We no longer have Home Health coming because they say Stan hasn't made the progress medicare expects. He has come so far from where he was three months ago!!
There were doctors who didn't expect him to live, didn't expect him to wake up, didn't expect him to talk.... We have heard of so many cases...even people we know, who sustained
this much injury who are walking, driving, etc...but took any where from two to ten years to get there... yet Stan is expected to gain by leaps and bounds in three months!!

If the OT and PT and speech therapist don't come, then the nurse can't come. So now I have to have him transported to the doctor's office for 'professional' medical observation. (He
can't be treated over the phone.) All I did was call his doctor to ask if there was something besides tylanol that he could take for the headache. I was told since he wasn't being seen
by the nurse anymore, that he needed to be in a nursing home where he could have 'professional' medical care. There were five serious incidents that occurred to him while he was in
St. Elias Speciality Hospital (which is a pretty big step ABOVE any nursing home) so why would I want him to be some place where I would be worried sick over his care!!

More medicare stupidity: I had to purchase the special cushion that makes it more tolerable for him to sit up in a chair. Medicare refused payment because he doesn't have a bed sore!!!
The cushion will help eliminate bed sores ... pressure sores.... !!!

I was told that I should NOT be putting him in the hoyer lift by myself. It is too dangerous. But I am also told that he needs to be up at least 3 times per day!

I took my leg to the doctor I had before getting MY doctor back. He did xrays...even though I was sure NOTHING was broken. The injury happened as I fell..before I hit anything. I felt
the tear or twist as I was falling due to the awkward twist that occurred. Because nothing was broken, I wasn't hurt....is how I felt was the diagnosis. It was two days later when I was
still hurting very badly, before I was even able to get thru to the doctor to see what the xrays showed. I explained to the case manager that I knew I hadn't broken anything, but that
something was terribly wrong with my knee. After insisting this was not arthritis etc...but something NEW and not just a flare up of old age.... she talked to the doctor, called me back
and said he was referring me to the orthopedic clinic. This was Friday...so I had to wait until Monday to talk to them. On Monday I called and found they hadn't received the referral.
Finally, that afternoon, they called back and said they had the referral...and that nothing was broken. Again, I insisted there was something WRONG with my knee. She offered me an
appt. ten days out. I argued, she moved it up to a week, I argued some more, and finally got an appt. in five days! I tried to tell them I wasn't sleeping because of the way it ached
at night. When I saw the ortho doc, I was less than impressed. He told me they don't do MRI's, that the only way I could know just how badly my 'medial collateral ligament' was
torn was to cut me open. I had been told by the Home Health nurses and OT and PT that an MRI was usual and that surgery was usual. Also looking on the internet, I assumed an MRI
would be done. So the doctor told me he would do an MRI if I insisted. I asked him, 'today?' and he said no, it would be about three weeks. He then offered me a brace.... after about
an hour, it came, and he was fitting it on me. It went from ankle to hip...was cumbersome, and painful. It did NOT keep my knee from bending, in fact was designed to allow the knee
to bend.... HELLO! bending it what hurts!!!

So I refused the brace. The first doc told me to ice it....which I did. This ortho doc says, NO ICE...heat! I finally told him that I guess I had wasted his time coming to see him. He looked
kind of startled and said, 'Oh no, this is my job, to answer your questions.' (I had asked him several times how he knew what was torn and how badly it was torn. He never did give me a
good answer...at least not one I could understand.) Anyway, I have an appt. to see him for a follow up on April 30. In the meantime, I had to see MY doctor (the one I got back) last
Friday for another matter, and she wanted to see my knee. She did some feeling around inspection and confirmed it was the medial collateral ligament that was torn, and to be sure to
keep the appt. with the ortho doc. She explained much more to my satisfaction why they don't do surgery or MRI's until about 12 weeks after such an injury. That it is better to keep it up
and let it heal. And then have therapy. So here I am....four weeks into the duration...hoping for some relief in the future. Some 'layman' friend did mention using a pillow, which does help
a little...but not much. The ortho guy did tell me that AFTER this thing gets to feeling better, if there is still pain elsewhere, then they would do an MRI to see if there was more extensive
damage.

Well... I hate to admit the rest of the ugly! Yesterday (Tuesday), I was doing just fine (but am lacking dreadfully in sleep) and had bathed, fed, etc Stan for the morning, had opened the
boxes from Kansas and had stuff spread all over the entry (just outside Stan's room). I had hung the urinal on the back of the wheelchair that sits in the entry, also. So to get to it from
Stan's bedside, I needed to wade thru the packages of diapers and pads that I hadn't picked back up when I decided it was time to change him again. He needed some major cleaning, and I
was so glad that I was able to contain it without soiling the pad under him, the draw sheet, or the bedding. I was still in the midst of this when he announced he needed to pee. I begged
him (foolishly...he hasn't the ability to control this) to please wait while I fetched the urinal. I can't step over things with this bum leg, so my jaunt to the wheel chair was slow and
difficult...and I returned in time to see a fountain spraying all over the bed. I started sobbing! Poor Stan... I couldn't stop. I was just too tired...but had to get him into the lift and off
the bed before I could completely change it. But first I had to get him diapered! I suppose it was a culmination of weeks of no sleep, deep sadness over the loss of our dreams and
previous life, etc...but it took a long time for me to get control. And he felt so guilty... I have tried to tell him it isn't his fault, and I know he couldn't help it.... but I know it really bothers
him.

SO...please pray for us! We have so much to be thankful for, but I fear it won't be the last time I lose IT.

Well.. now you all know why I haven't been writing updates.... who wants to send such depressing news to one's friends!!!

Thank you for caring and praying. Please know it is such a great comfort.

Love, M