what we have here is a failure to communicate

Maggie and I made a trek to Walgreens today. This is nothing new. I am at Walgreens at least twice a week, sometimes more. . I generally go without Maggie because the aisles are narrow and the pharmacy department is in the back making it tough to navigate her wheelchair in there. It is accessible, just tight. Today, I had to bring Maggie. The pharmacy was crowded which made navigation even tougher. We slogged our way through and waited in line to pick up the meds.


I always go to the same Walgreens. Maggie’s meds are numerous and complicated and staying in one place makes things a little less confusing. At least 20 different people work in the pharmacy department. Not all at once, of course, but I am certain that between pharmacists and assistants I have seen that many different faces. They are very helpful. In fact, if I had to grade them, 15 of them get an A. Two get an A++There are a couple of b minuses and one gets an F.

Guess who waited on us today? That’s right, F for Friday.

Ms. “F” retrieved two of the meds but the one I came in for was not there. I asked about it and she said.” No. You didn’t order it.” Actually, I brought in the prescription myself last week. (Check computer again) “You picked it up on the 14th”. Well I picked up what you had but it wasn’t filled and they were supposed to order more. (checks computer again) “Oh then it’s too soon.” Too soon for what? “Renewal” I am not renewing anything, I did not get the full amount. This is a permanent prescription and there was only enough in stock for three doses.

Just as she does EVERY TIME she waits on me, she directs me to the drop off window to present my questions. I look eight feet to the right to the drop off window, which had a line about eight people long. I said I am not going to stand in that line. I just stood in this line to get here. You must understand that the drop off and pick up windows are openings to the same room. From the outside its two lines and two windows, but the two clerks are standing almost together. Moreover, shock of shocks, they are using the same computer system.

Every other clerk in that store deals with whatever questions arise with their customer. Ms. F just refuses – or at least she does with me.

I drew in my breath and said. No. I will not go over there. I am not here to drop anything off; I am here to pick it up. You are the pickup woman. You need to find out why it is not here. If you need to ask her do so, SHE’s RIGHT THERE. She simply turned and asked the woman who said “Oh, I got a communication error”. Clerk looks at me and repeats this in a very serious tone,” she got a communication error”

As though that explained anything at all.

She was perfectly satisfied with this explanation but I was confused. I asked what that meant and she said she did not know. (I think that’s why she was satisfied.) She told me to have a seat so they could work on it. The seats are right between the two windows. She was determined to get rid of me.

It worked. I gave up and went home. Maggie was at the end of her rope and we had to leave. I have to go back in the morning and hope against hope that she has the day off and I get Ms. A++

Communication errors…They seem to be going around.

Dog gone it

Something someone said about allergies brought this story to mind:

A few years ago, Maggie was in the hospital for one of those long stretches – maybe three weeks. Those are hard on Maggie, of course, but they are also tough on the entire family. Out home life is completely disrupted because I stay with Maggie the entire time. The boys, who were still at home had to adjust to a house without mom and generally without dad too. Steve came home to sleep and usually fed the boys, but between work and the hospital, he was not at home very much.


Of course, the boys worried about Maggie, but these hospitalizations had become routine for all of us. There were certainly times Maggie was in grave danger, but we only told the boys when it was absolutely necessary. We did not want to alarm them prematurely or (God willing) unnecessarily.

They spent a fair amount of time visiting in the hospital as well. On one visit, Eddie was laying at the foot of Maggie’s bed reading a magazine when the young resident came in with some results of an allergy test. Maggie has multiple food and medication allergies, which we already knew about, but this was the test for allergens in the environment. Turns out she has a lot of those too. Cats, dogs, mice, dust etc

Her allergy numbers for dogs was really high,.(And yes we had a dog then and still do.)The young doctor, being very thoughtful, did not want to say this in front of Maggie’s brother. Rather than give the information directly, he just cited the numbers allowing us to draw our own conclusions. Presumably he figured Eddie wasn’t paying sufficient attention or wasn’t going to catch the gist of what he was saying. What he didn’t realize is that my boys spend a lot of time in hospitals and can understand doctor speak very well.

Eddie whipped his head around and said, “Maggie’s allergic to dogs??!!??”

The resident looked very uncomfortable to be part of this moment when a kid learned that his sick sister might mean we had to get rid of the dog..

I said to Eddie evenly, “looks like she is”

Eddie went right back to his magazine and said “Then Maggie’s going to have to move”

I just laughed. It was never really an issue. We use life as a measure, not just a test result. We have to or Maggie would live in a bubble. Maggie had peacefully coexisted with the dog since she was about three years old. Having this test result information was not going to change anything. Eddie knew that, I knew that, even Maggie knew that, but that kind young doctor looked very confused.

Shouldering Responsibilities

I cannot imagine why my shoulder injury from last summer is not yet resolved. I have been dutifully going to physical therapy and doing the exercises for four months, but the pain is just getting worse. It could not possibly be that my body’s failure to heal itself is due to the constant lifting of a certain 70lb daughter of mine, or wrestling with her wheelchair, or piling on all the equipment. Could it?


This all started last July 1 when we were moving my aunt out of her assisted living place, I helped my nephew move a television stand. I knew immediately that it was too heavy for me, but I continued anyway – because sometimes I forget that I’m not 18 like he is. My arm hurt for a couple of days. I felt like it was a muscle strain and it would go away soon.

It did, but not entirely and then it started to get worse. By August 1, it was hurting all the time. By that time, my aunt had passed away and we had to deal with the funeral. Then there was her apartment to clean out and her belongings to be distributed. By then it was incredibly painful. . I made an appointment at the orthopedist for September 17. Though the pain was in my upper arm, the injury is to my shoulder. He took x-rays and thought I had a rotator cuff injury, bursitis and bony impingement. He gave me a cortisone shot in the shoulder (ouch) and prescribed physical therapy.

The cortisone shot relieved the pain and I started physical therapy. It seemed to really help for a while. After about six weeks, it started going the other way and the pain returned. Presumably, the cortisone shot started to wear off. Now my shoulder is as painful as it was in September. I cannot reach for anything. Putting on my coat is excruciating, unloading the dryer is painful and closing the car door after I sit down is becoming difficult.

It is clear that all the lifting I do is exacerbating the problem. I told the doc about Maggie and her need for full care. He jokingly said, “Don’t lift her.” Ok, she can just sit in her chair for a couple of months. She does not need to lie down or get a diaper or anything else. He was kidding because he realizes that is impossible. However, continuing as I have may mean recovery is impossible.

Today I return to see the orthopedist. I will not get another one of those shots because I fear it simply masks the injury. Then I lift and reach without pain and likely do more damage. At least the pain is an indicator of which positions to avoid. I am hopeful he will order an MRI and we can find out what is really going on and determine what can be done to fix it.

I am not sure what I am going to do. There is so much physical work involved in caring for Maggie. If I need surgery, I am going to have to hire someone to help. The nurses are here, but they cannot lift her on their own and I do almost all of the lifting. Eddie and Tim are away at school and Steve is at work all day. Besides, his back is about the same as my shoulder.

I probably need to hire someone whether or not I have to have surgery. It is just so awkward. There are dozens of lifts a day, but they are spread out throughout the 24-hour day. I cannot have someone sitting here doing nothing for an hour and then spring into action.

We actually have a ceiling lift system, but there’s so much work involved in using it, that I probably do the equivalent of two lifts to save one. You have to get the sling under Maggie, which means moving her a few times, and then take it off again once she’s in the chair. In order to do that I pretty much have to lift her out of the chair. It defeats the purpose. I think it’s designed for a patient who can assist a bit more in her care than Maggie can.

I need Samantha Stevens from Bewitched to just twitch her nose and make things happen.

enjoy this, you must

The long weekend is winding down. It was quiet, and rainy - especially Monday. Monday was ridiculous. I had to cancel a planned outing with one of Maggies' friends. It seemed irresponsible to take out two girls with fragile health condition in the middle of a deluge.


On Saturday we took Maggie to the Presidio and walked around the park that is part of the Letterman Digital Arts "Campus". It is lovely. It's hard to believe there was once a military hospital on this site. Now it's lush and elegant and very wheelchair friendly. It overlooks the Palace of Fine arts, which you can see in this picture.

Brisco, the wonder dog is not thrilled with it because they enforce the leash rules and he prefers to be free. He's always a mellow dog (except when the mailman is anywhere on the block), but he behaves extremely well when Maggie's holding the leash.

The Letterman Digital Arts center is part of George Lucas' empire. The buildings have the coolest stuff from various movies. We can't go inside, but you can see alot of cool stuff from the windows.

Or you can just hang out by the Yoda fountain and drink in his wisdom.

Glad we did this before the storm hit. Yoda's fountain may be overflowing by the time this is all over.

I'm with her

Hi, I saw this and had to post this. It was written by Collin Raye for his grandaughter who has a neurological condition. It is sweet, but its a tear jerker.

Oh, can't post the song, just the link. click it. You will smile.


http://www.youtube.com/watch?v=oj6GXVTAOiU&feature=player_embedded

I don't know Molly Hightower. I never heard of her before today. She went to Haiti for a year to work with disabled orphans. Wow.

She is a friend of my nephew. They went to college together. He was concerned because no one had heard from here since the earthquake in Haiti. He had reason to be concerned. Her remains were found in the orphanage in which she was working.

She kept a blog about her experiences in Haiti. (http://www.mollyinhaiti.blogspot.com/) I hope that brings some comfort to her family.

Only the good die young.

This article was forwarded to me today.
http://www.oregonlive.com/news/index.ssf/2010/01/family_says_remains_of_up_grad.html

Eggs, over-whelmed

I learned something this morning. The word “overwhelmed” is redundant.

How did this bit of knowledge come about, you may ask. That is easy. I am completely overwhelmed by life right now. It struck me as odd that my ability to handle incredible stress on a daily basis sometimes fails me.

I thought perhaps generally I am just “whelmed” and today I am over-whelmed. Because I am a geek, I looked up the word “whelmed” and found this “to subject to incapacitating emotional or mental stress…see overwhelm

If you are “whelmed”, you are already “over-whelmed” You don’t even need the “over”

This may not be news to any of you, but I lead a rather stressful life. In the almost 16 years that I have been Maggie’s mother I have learned to deal with the stress of caring for and worrying about her every minute of every day. As I have often said, 1000 individual things that would freak out most people have faded into the whole tapestry of raising Maggie.

In addition to Maggie and the challenges that being her mother presents, there are the other, “normal” stressors that all of us have. These seem to upset me most. Perhaps it is because I am so stressed dealing with Maggie that the everyday life stressors are exaggerated. Perhaps it is because I live on the edge and it does not take much to push me over, Perhaps I think I should be immune from these because I deal with the Maggie stress so well. Perhaps it is just life.

I know I am overwhelmed and as the GI Joe cartoon says, “knowing is half the battle” But what do you do when life is coming at you from all sides?

What I do is focus on something small and positive and remember that all day. It is an easy trick, that I think I always did, but one that became clear because of something my husband said to me when we were first dating.

We were both in law school, which is a stressful place. Aside from the rigorous academic expectations and the incredible amount of work, there is the social aspect. Law school is like being stuck at sleep away camp with 100 people who drive you crazy. For the first year and a half, you only see the people you go to school with and they are all under the exact same stress you are. It is nerve-wracking to say the least.

One morning, after at least a dozen attempts I successfully flipped two eggs using just a flick of the wrist. Prior to that attempt, I ruined many eggs trying to make the perfect over easy egg without using a spatula or anything. I don’t even like eggs over easy, but I wanted to know how to do this. I had done one egg occasionally, but never managed to do two without breaking them. It was a personal success that meant nothing to anyone but me.

I went to school flush with my little victory and walked into a class. Immediately some classmate said some annoying law schoolish thing and I deflated. Steve looked at me and said, “remember the eggs” and I smiled.

It still works, and those eggs were flipped in 1984.

My advice to you today…remember the eggs in your life. It will get you through days - or 26 years --of being whelmed, over or otherwise.