Finding the Day, Finding the Way

Irish DalmationI’ve been pretty sure, for the past year or so, that this diagnosis of MS is an inaccurate shot in the dark. The “shot in the dark” was literal, for four and  1/4 years … over 1,500 evenings found me struggling, initially on my own but eventually with Rick’s help, to carefully identify an unused spot on the next body part and inject a burning liquid that I had less and less faith in as the time went by. We had carefully drawn life size maps of my arms, and upper legs, and hips, and abdomen. We faithfully followed the route from body part to body part, night by night, so that one spot would not be at risk of  losing its skin due to over-use. I stopped the struggle a year and a half ago, and felt better about myself. For anyone who hasn’t had to deal with receiving syringes in plain brown boxes delivered by UPS or FEDEX, worrying about the boxes freezing in New England winter weather, or broiling in New England summer weather, it is a frustrating, humbling experience. We asked the local pharmacies (two of them) if they would accept the shipment each month, and hold the syringes there for me to pick up as a prescription. No, they each said, it’s not a service we dare to provide … we can’t be responsible for them being misplaced or mishandled. Had I needed a safe house for delivery just a few years earlier, we could have had them delivered to my parents, or to Rick’s mother. But those houses were now owned by others. And my neighbors (and relatives) all worked days and couldn’t receive the packages, either.

As I worked full time, and didn’t want the syringes sitting on the back steps untended, I asked for a weekend delivery. Yes, I was told, they could do a Saturday delivery via FEDEX or UPS. I said I didn’t care which, as long as it could be on a Saturday. The first month, Saturday came without a delivery. I called the pharmacy in Florida where the syringes were ordered, and they tracked the shipment, and said it was in Massachusetts, and would arrive soon. If it hadn’t arrived by 4:30 pm, I was to call again and let them know. So I stayed home for the rest of that day, correcting papers, and called again at 4:30 to report it missing. They said it would be delivered Monday morning. I said I would be in school. They said they could leave it inside if I could leave my door unlocked. I said I had a dog who wouldn’t like an intruder. They instructed me to put the dog in a room with a closed door. I did that. When I came home from school, I found the box on the back step. I went inside, let the dog out of the room, and brought the box in.  A month later, on a Saturday, it didn’t come, and I went through the telephone calling again. As we were having a cold snap, I expressed my worry about the temperature of the syringes, and they told me not to worry, as they were always in a cooler with ice packs. I asked how that would keep them from freezing … and they said their chemists were sure that they had the right amount of ice to keep the temperature constant, just above freezing and not close to overheating. But, they said, I should always check the syringes, and if one looked cloudy, not to use it as it may have been frozen and then thawed, and would then be ineffective. I continued to ask for Saturday deliveries, and occasionally one made it, but most often they were Monday mornings, and always left on the back step. I stopped closing the dog in a room. But I continued to worry. What temperature did they reach as they sat in the truck over the weekend? I could think of so many things that could go wrong. So I finally decided that ‘convenient home delivery’ was not ever going to work for us.

Then one month we had finally arranged to have the syringes delivered to a “hub” of FEDEX in a town fifteen miles away, to which Rick could drive before heading home from his job. It was now winter, and one month he tried to drive in an unexpected blizzard and found himself on the infamous rte 128, delayed by stalled vehicles. My anxiety was increasing as I waited for him to get home. It was an hour after he was expected, and I called him on his cell, only to hear of his unfortunate situation on the highway. And Rick, fearing he would be too late, or that the ‘hub’ would have closed early due to the storm, asked me to call them to ask how late they would be there, and I joked with the FEDEX worker that he would have brought her coffee, but couldn’t as he was stuck in the middle lane of the highway. She assured me that they would still be there for an hour more. I called Rick back on his cell phone, which was dying, by the way, and he said he would continue on, though one of his windshield wipers had just broken due to the heavy icing. His phone then went dead, and I began saying my prayers that he would be safe getting there, and then coming home. And, of course, that the syringes wouldn’t be exposed to frozen temperatures, rendering them useless. The worst of the evening happened when, desperate for some good news, I called the pharmacy in Florida who shipped the syringes out, to find out that they had, in fact, been shipped on time and to the correct, new address. They assured me that they had been shipped correctly and would be there waiting for Rick. WRONG. When, after two and a half hours on a strip of highway that ought to have taken fifteen minutes, he finally arrived at the ‘hub’, they had nothing for him. He called me from the ‘hub’ and asked me to verify the shipment, so I called Florida back, and asked specifically what truck they were on, and could they track its whereabouts.  They could, and did. It was a UPS truck, and the driver’s tracking note indicated that the delivery had been refused by FEDEX as they don’t accept UPS deliveries. Why then, I asked, would they have used a UPS truck instead of FEDEX? Well, it seems that the delivery plant, in Pennsylvania, rerouted the packages with whichever carrier had the lowest price on a given day. Could they have changed the delivery address to a UPS hub, if they were using a UPS truck? Yes, they could have, but the people in Florida who set the delivery address had no communication with the people in Pennsylvania who chose the carrier. Rick made it safely home, and I clung to him, shaking and crying, again.

So yes, I have had frustrating events in the past, and while I can’t say I handled them well, I can look back and say we survived them. Further shipments were delivered to the UPS hub, only seven miles away, with the understanding that they would accept any carrier’s delivery of my medication if I would pay a five dollar per delivery fee to UPS. I would, and I did pay that fee. When our insurance allowed us to order two months’ of syringes at a time, the fee rose to ten, and I paid it. Some said I ought to make the pharmacy in Florida pay that fee, but it was really not worth the fight or phone calls. We stuck with the UPS deliveries until I retired from the classroom and could be home to receive my “convenient home delivery.” And within a few months of being home, I ceased injections. I chose at that point to change doctors, and handle whatever MS symptoms might arise as they might arise, and not continue injecting with the belief that symptoms would arise more slowly, or do less harm. All of those claims have now been negated by research that has stated that ten years of injections have made no significant change in rates of progression or extent of disabilities.

The meds continue today to be prescribed … their price has now doubled from the $3,000/month that my insurance company was paying five years ago  to about 6,000  + /month. Oral medications are beginning to arrive on the market, but they contain the same ingredients as the injections and take the same approach toward slowing progression by distracting T-cells in the nervous system. People with MS and people who care about people with MS continue to raise funds for research toward a cure. The money is also supporting research towards better treatments. Unless they find “a cause,” there will not be “a cure.” Some raise money for providing services to people with MS who need services.  There are those who, like me, prefer a more natural lifestyle treatment plan of eating healthy foods, avoiding dairy and meat and all things fried, and getting exercise. Then there are still others who believe that the carotid arteries in the neck are sluggish in people with MS (or totally blocked in some cases) and that surgery (CCSVI)  on those arteries (to insert a ‘balloon’ to open them) is the way to defeat MS. Still others have undergone stem cell surgeries using their own stem cells and have seen dramatic, if temporary, improvements.

I know I’m not a doctor, let alone a neurologist. I know none of us has a crystal ball. I am living a more normal life now than when I was trying to reconcile within my own beliefs the injections of a supposed restraint on my immune system … I don’t have to arrange “convenient home delivery” receptions. I can go to the pharmacist in town to pick up my normal prescriptions like other townspeople. I only have one mouth, and that is where my medications go. I don’t need to maintain body maps with scheduled sites. I don’t need to ask my husband to reach the fatty area on the back of my upper arm. He doesn’t have to see me try to hide the burning feeling that followed each injection and lasted for between 20 and 90 minutes every night. And for all the Hoo-Hah that they promoted those injections with, they did not slow the progression of my depression… they did not counter my fatigue, or ease my back, or focus my attention. They let me down, and I retired before I’d planned to. But yes, I would have had to leave my job early if I were hit by a bus. It’s not really a consolation to think that way. I had a plan, and a goal, and MS disrupted it, and limited our economic future. C’est la vie avec MS.

So I do get frustrated when things medical don’t work out as carefully planned. I went to the local hospital today for a urine analysis, as I’d called my doctor’s nurse suspecting that an infection might be causing the symptoms I’ve been experiencing this week and last. But I recognize that the bladder and bowel can be affected by MS, and so it may not be an infection. Only a urine analysis could answer that question. My primary doctor is on vacation until later this month, and so I called the doctor who has nurse practitioners working with her. But somehow the order for the analysis didn’t reach the lab by the time I got there, and so I wasn’t allowed to leave a sample, but am invited to come back tomorrow if the order is received by then. Rick is always the in-person witness to my reaction to frustration, and he remains patient but appropriately reminds me, in a quiet way, that I’m reacting to things I can’t change at the moment, and ought to let them go. I’m letting that frustration go now. “Thinking in ink” helps me to do that. If it helps you to read this, I’m glad. If it annoys anyone that I think in ink, well, then it annoys some. I’ll remember to say that prayer for serenity …to accept the things I cannot change. Glitches in the medical community are far beyond, as Lincoln himself would say, “our poor power to add or detract.”

Be well, all. And live as normal a life as you can. Beware “convenient home delivery” promises. Eat healthier. Exercise. Find Serenity. And, take care of your skin. You may need it one day for stem cells treatment without the complexities involving stem cells from others. (Wonder what my having melanoma has done to my  potential for stem cells from skin… thoughts for more thinking in ink.)

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  1. I too think in ink or more often in pixels. I wish I didn’t understand the frustrations so well. Even with an infusion center to take care of my tysabri, I’ve had times where I’ve shown up but the drug hasn’t or the center forgot to order it. I try to tell myself this is just life taking it’s turn in the “me versus the crap otherwise known as life” game. Still, I am glad to hear you are still doing relatively well.

    Take some solace in the act of complaining. Those who are very ill haven’t the energy or ability to do so with nearly the eloquence you write.

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