Just Another Herd Creature

I'd only had health insurance for about a year. The years I'd spent without health insurance, made me do my research before I'd spend my meager dollars on an office visit. This was before you could google any subject in the comfort of your home. I would go to a medical library in San Francisco that catered to non-medical people. It was called PlaneTree Health Library. I'd have a medical terminology dictionary under one hand, while I flipped through articles and books describing whatever symptom I was experiencing, with my other hand. Without a primary care doctor, I had to do my own referral. Once I determined what type of doctor I needed to see, I'd start the rounds of phone calls to find one that would see me without insurance. And to get the all important cost of one visit.

Luckily, I had insurance by the time I start having some strange sensation changes in my legs. Since I was use to doing my own research, by the time I had my first meeting with the Dr. D, I had a couple of possible diagnoses. He took my full medical history in his office. Then we moved to an exam room, where he proceeded to do all those neurological "follow my finger", "close your eyes and touch your nose" and the metal hammer taps on nerves close to the surface that would make your leg jump. After he finished, I told him about my research and I wondered if it could be pernicious anemia or multiple sclerosis.

I fulled expected him to dismiss my amateur doctoring. After all my education ended with a Bachelor of Science degree in Photography and Anthropology. Dr. D had all those years of study, ending in a PhD in Medicine, specializing in neurology. 
 When he said "Well, let's set up some tests for those." my jaw hit the floor. My research told me pernicious anemia was completely controlled with B12 shots or pills. MS was a completely different animal. It's an auto immune disease that is like rolling dice, a complete crap shoot on what, when and where your body will attack the myelin — the fatty substance that surrounds and insulates the nerve fibers — as well as the nerve fibers themselves. There wasn't (and still isn't) a cure for it, only a bunch of disease modifying drugs.

As I sat across from him on Feb. 14, 1997, prepared to hear the test results, my brain went blank. He fidgeted with some papers, before he took a breath and said "The test came back positive for MS. I'm sorry." I know he talked about the three drugs approved at that time for MS. I didn't process any of the information. He gave me pamphlets on each drug. Asked me if I had any questions. I had a million questions, but I knew they were not ones he could answer.

The rest of the day was a blur. I had to drive to San Jose to pick Guy up at a convention. I didn't cry much that day. Even driving home, telling Guy what the doctor said, I didn't cry. The fear held the tears in check, until the next morning. I found myself crying in the shower. It was a long shower and a longer cry.

For many years, the only people who knew were my sisters and a few friends. I didn't tell my mom. She was 79 years old and not in very good health. I didn't want to worry her. I didn't tell anyone at my job. The future was a big question mark. Of course, the future always has an unknowable side, but now I felt like each day was a giant question mark. Would I wake up one morning and be unable to hear, or see, or walk? These are all possible MS outcomes, sometimes they are temporary and sometimes they are permanent.

It took a while to breath freely without the specter of MS invading my every thought. I don't know exactly when it happened, but eventually the fear lessened and I found life just going on as it always had. I've been very lucky and have had only one major attack and a few minor ones. I have fatigue and some brain fog, but I've learned to manage it. Overall, I think these last 20 years have played out about the same way they would have had I not been diagnosed with MS. The future is funny that way, and I hope it continues to be this "funny".

I had to call 911 last night. We were going to bed at an unusual early time for us, about 11 pm. As I was moving Guy around the end of the bed using the Hoyer lift, he started to fall. The first minute was full of reality bending, the lift is a stable device, in all 34 years together, one had never failed while we were using it, failed in a way that left Guy falling through space and me trying to stop him. We have had operator error issues, when I hit the valve and he dropped too quickly, but nothing like this. The lift was on its side, his butt was on the floor and his legs were in a painful position. He seemed to be sort of stable, so I grabbed a couple of towels to roll up and put under his legs to get him out of the immediate pain. Next, I grabbed by phone, as I walked the dogs to the back door and locked them in the laundry room. Dialing 911, I next went to the front door, opened it wide and turned on the porch light. Not that they could miss our house with all the xmas lights on.

Walking back to the bedroom, I was now speaking to the 911 operator. I spoke clearly and emphasized that we lived in San Leandro, because there is a street by the same name in Berkeley and once they contacted a fire department for that area and it slowed down their arrival. We went through all the questions they have to ask and then they assured me help was on the way. He was still uncomfortable and I tried to make it better, but instead the t-bar that was resting on the bed, moved and he was going fall backwards, which I knew would put him in more pain, plus, there was a part of the lift that I saw moving in a way that would have pressed into his thigh, possibly piercing the skin. I did the only thing I could, I grabbed the chain from the top part of the t-bar and held it in place to keep him in the same uncomfortable, but not painful or dangerous position.

The dogs are barking, while we strained our ears to hear if the EMTs had arrived. My position is such that my butt is up in the air, as I bend over part of the bed, holding the chain. My back is straining and my hands hurt. I readjust as much as I can, each time scaring Guy, because he thinks he's going down. Finally, I think I hear people on the porch and call out to them to come in. So, that is the tableau they find us in. A naked Guy in a strange sitting position, surrounded by the harness and the mess of the metal Hoyer lift on its side. I'm dressed in a house dress with my butt in the air. Dogs barking with the urgent insistence that they need to get into the house because . . . well . . . people are here!

It took a little figuring and Guy explaining his needs, but eventually they were able to get him in the bed. We thanked them for listening to him, rather than just moving him, which some people have done in previous emergencies. He was cold and little in shock, but there was no broken bones, no twisted soft tissue, no blood. I was with him from the moment it started and every step of the way as he was moved about and I knew he didn't hit his head. He didn't want to go to the hospital, and I agreed. It has taken me about as long to write this, as it did from the movement he fell to the exit of the EMTs.

Writing this, I sound so calm, which I mostly am DURING the actually emergency, but about 30 minutes after the EMTs left, I was in the bathroom ugly crying, as the "what ifs" go through my head. My body is doing its thing and the tears had to come and the adrenaline had to go.

The cause of all this excitement: one of the wheel stems broke off. Funny thing, Guy had started the process to get a replacement, because we knew it was getting old (at least 12 or more years) and they only give you used ones to begin with. Thanks to our wonderful home care person, Stacey, we were able to rent one from a previous client of her's. She saw it in the house for years, but it was used as a coat rack. We've rented it for 2 weeks (they don't want to sell) and are looking into buying our own, rather than go through the process with Medicare.

FYI: I called Apria this morning for an update on his request for a new lift. They told me they had received the doctor's prescription, but it was denied by Medicare, because Apria no longer holds the contract with them for our area. I wonder when (or if) they were going to call and let us know this bit of news. We're not willing to go through the process of finding who the provider would be, getting a prescription and then still waiting for all the approvals and delivery. We have a little breathing room to source a local one or get a new one, depending on the cost.

2016 is ending on a bang! Hey, any year you can walk away from, is a good year. Not sure how mobile we will be at the end of 2017, the year of tRump.

While she no longer has the strength to speak, she knows we are there.  Her eyes, brown and deep set have always been framed by glasses.  I don’t remember a time when she didn’t wear them. I’ve seen pictures of when she was young and I’m always taken aback by the lack of glasses on her face.  Now she opens her eyes wide and we get very close to her, so she can see us.  As her eyes focus on our faces, she smiles weakly. I see her through teary eyes.   I hear her voice in my head, “Don’t cry”.  This is what she would say to me, whenever the subject of her death came up in our weekly phone calls.  I’d get quiet and she’d say “Are you crying?”  No, I’d say, in a voice full of tears.  In her calm Mom voice, she’d say “Don’t cry”.  It always made me cry harder, just like I am doing now. 

After days of keeping a family member in the room with 24/7, she took the 10 minutes when my sister and I stepped out to go to the cafeteria, to take her last breath.  Coincidence or did she bestow on us her last motherly protection? We have no memory of watching her take her last gasping breath.  There was no dashing into the hallway, calling for a nurse.  Did she open her eyes on last time?  Was there pain in those last seconds?  All of that has to be left to our imagination, our final memories only include the appearance of her gently sleeping.   I prefer to think of it as one last gift she gave us.      

1. Lewis Brother's Shoe store - receptionist in children's department
2. Quality Control Enumerator - 1980 US Census
3. Sear Portrait Studio Manager/District Manager
4. City of Oakland
    a. Recreation Specialist - Studio One
    b. Administrative Assistant - Information Technology, 
        Housing and Community Development, Human Services, 
        Public Works

I did a good/bad thing today.  On my drive home from work I go by the Oakland SPCA surgery center.  I saw a red car drop off a dog and then drive away.  The dog tried to run after the car - that broke my heart.  Then it was clear the pup had no idea what next to do, because she just stood in the middle of the road.  I pulled over and called to her - she came over immediately with tail wagging.  I just had to put her in the van - that's the good thing I did AND the bad thing, because it's so easy to fall in love, but we cannot keep her. 

She is a dark brindle pit bull.  I think she's about 6 or 7 months old.  Very people and dog (at least with Pip, who took to her right away) friendly.  She is not house broken.  I showed her the laundry room and opened the people size door to the back yard, but she pooped in the hallway.  She doesn't seem to know any commands and likes to jump up on you.  She managed to jump up high enough to touch Guy Thomas lip - and that's quite a distance for her current size.  I believe she will be pretty big.  She's food focused; don't know about toys because right now she and Pip is each other's toy.
Do you or do you know anyone that would be interested in this cute as a button puppy?  We live in San Leandro/Oakand area. 

I will have to take her to the SPCA this weekend.  We really cannot keep her.
 

Here's where time takes a left. All the rest of this seems to happen in the space of 30 minutes or so.

I go into the kitchen and I'm throwing stuff around at break-neck speed - cleaning and cooking all at the same time.  Except I don't have everything I need.  I jump in the car and zoom to the store.  I remember to buy the onion dip.  I wanted to buy lasagnas, but I was having trouble finding the frozen food section.  The store was all re-arraigned.  I find every other type of frozen entree, but the lasagnas.  The whole time I'm wondering why none of my friends, who were scheduled to help, have shown up.  I go back home and continue to cook.  When I start to put out the onion dip, I realize I forgot the chips.  Another jump in the car and a trip to the store.  This time I decide I'll make a big salad too, so I run to the produce section, but there are no mushrooms and I decide I can not have a salad without mushrooms, so I nix the salad.  I head back to the frozen food section and am  desperately look for something else I can throw in the oven.  I load the cart up with packages of appetizers.

By the time I get back, a few more people have shown up - again mostly Betty's co-workers. I continue to cook and host the growing number of guests.  Still none of my helpers have shown up.  Why I didn't try to call any of them, I'll never know, but then dreams are not real life - thank goodness.  Next I find myself at my desk and I look at the calendar and discover it's not the correct day for the party.  All these people showed up 2 weeks early.  That's when I wake up.