You belong among the wildflowers
You belong in a boat out at sea
Tom Petty – Wildflowers
Perhaps a better song to quote is U2’s Sunday, Bloody Sunday. The tragedy in Las Vegas was so unthinkable and horrific. We watched the first episode of Ken Burns’ The Viet Nam War this week. A veteran was quoted saying that there is a reason we are the dominant species on this planet and that people say the military turns boys into men, but no, he said, it is just a finishing school. That was a chilling comment to hear after Sunday. In another movie we watched recently there were mountain lions (scary) but the humans in the movie were much scarier. Our whole state was impacted by the tragedy Sunday. It is sad that our country can’t do more for mentally ill people and can’t come to consensus on gun safety. #BanBumpStocks
Northern Nevada supports you Las Vegas. The love that poured out among those fleeing as well as the first responders and hospital staffers, as well as the response from the community at blood donation sites in both Las Vegas and Reno, shows the side of humanity I would rather focus on. #VegasStrong #NevadaStrong. I wish that everyone impacted somehow finds peace and recovery soon. I know it will be a long time coming. It affects every security guard in casinos in Las Vegas and in Reno, and many, many other walks of life too and every big city outdoor music festival, as well as the friends and family of the victims. And every victim belongs among the wildflowers or on a boat out to sea, instead of being killed by a human beast.
We also lost a rock and roll icon, Tom Petty, a week ago. I like his music and Stan and I saw him live in Reno many years ago. I chose those two lines from his Wildflowers song not only for the victims but also because I love to be outside among the wildflowers, but my seasonal allergies are really bad this year. I can’t cough or blow my nose or swallow well so I am beholden to my cough assist and suction machine. If I could go on a boat out to sea I could get away from the pollen.
I have had a lot of thick saliva. From the British MND Association website I got a PDF about dealing with saliva in ALS/MND.
I have been taking Pineapple and Papaya Enzymes to help with breaking up the thick saliva. The publication said pineapple juice could be swabbed in the mouth to help with the same thing. We had some pineapple juice, so I swabbed some in my mouth. I got a very quick reduction in thick saliva. But it only lasted about 5 minutes. So then I swabbed some more. And then some more. And soon I had swollen lips and felt as if I OD’d on antihistamines. This could be an allergic reaction. It turns out pineapple is a strong antihistamine. Even if it is not a pineapple allergy, I do not want to OD on antihistamine. I had been trying various combinations of anantihistamines and decongestants and expectorants, to find allergy relief and trying to keep track in my head. But there are way too many variables to keep track of. Plus I really want to find out which med is making my eyes uncomfortable. I messaged my doctor at UCSF to get her input. She agreed that I can methodically try discontinuing one med at a time, and stay off any discontinued for at least a week. I decided to start with Neudexta. I can stay off it and see if I am having psuedobulbar affect (inappropriate laughing and crying). If I am not having that symptom, then I can discontinue it completely. Four days off so far and nothing inappropriate. I am also documenting when I need my eye drops. Yes, I still need them, and yes I am still having allergy symptoms (sneezing – works better than cough assist! I appreciate that I can still sneeze), itchy eyes, runny nose. This could all still turn out to be my seasonal allergies. I am still hoping for a deep freeze soon!
I became empowered this week and decided to make my own phone calls. Stan does not have patience to wait for customer service to pick up and he gets frustrated with being passed on to another hold and phone tag is also frustrating to him. So I sat down with my Speech Assistant on my phone with my wireless keyboard and used our house phone to call our insurance company. I had pre-typed “My name is Margaret Macdonald. Please be patient while I type.” I waited on hold a long time and then I got the screener. I explained that I was calling because the accumulator that my providers see says I have not met my maximums but I have. So my doctors make me pay and then we ultimately get refund checks. Then I was connected with someone who could help. She said she could see the problem and she would send it their IT department. Then she said, “is there anything else I can help you with?” And I said, “yes. I am waiting for approval for a new drug and with my disease every day counts.” She said it is all approved and she would call Option Care, the infusion supplier, for me. Success!
Next I called Searchlight, the patient support group for Radicava – the new drug. Again after a long hold and with a pre-typed opening statement I talked with a customer service representative asking for my Patient ID Number and Case Number, and my status. I was transferred to my case manager. She had my benefit summary and she had already enrolled me in the copay support program. I should receive the benefit summary in the mail on Tuesday. Again success! So now I can make my own phone calls, and my husband will be less frustrated.
My allergy struggles and all my ALS struggles are so very minor compared to the hell created by the human beast in Las Vegas. Now if only we could turn the clock back to before that Sunday, bloody Sunday, night…..