A ‘harmonized’ life these days sounds like a tall order. Between housework, homework, workwork, and busywork, there are perpetually too many things to do, and not enough time to find that mythical balance. Nothing is more frustrating than feeling like you’re doing doing doing but getting nothing truly done that you really want. – Jack Canfield
It is hard to find balance in life today – in work, in marriage, in parenting, in health, in social media, and in all parts of life. This week we approached a balance in our marriage, tried to enforce balance in our son, and I still struggled with balance in my dry mouth/drooly mouth situation, and there is more, as you will see.
I came down with a cold last weekend and texted my nurse practitioner on Monday about getting in to see her that day. She replied that she was not in the office that day but she would call in an antibiotic for me and see me on Tuesday. It is important to me to get help for infections as fast as I can because of my heightened risk for pneumonia. Stan then had similar symptoms but his main problem was his swollen foot and leg. He could barely get his foot in his shoes. So I texted and asked if we could both come in together and she said no problem.
So on Tuesday, Stan and I went to the doctor together. In addition to my runny nose and congested throat we talked about my saliva reducing medication. I had been using Atropine Sulfate, one drop under my tongue twice a day. I tried to keep my mouth open to let it absorb. I have a lot of trouble moving things to the back of my mouth to swallow plus it tastes horrible. But holding my mouth open for three minutes and keeping my tongue out of it didn’t always work. It would either overflow or get on my tongue. So she switched me back to Robinul (glycopyrrolate is the generic), which I had tried in small doses in the last quarter of 2016. She also gave me a new nose spray.
Then it was Stan’s turn. She looked at his leg and immediately was concerned about a blood clot. She ordered a test for that the same day. She also suggested it could be gout. She gave him three pills to try the next day. If they helped his pain it would be gout.
It felt to me like we had brought some balance by both getting help instead of it always being me as the patient.
For the first few days back on glycopyrrolate I experimented with the dose to see what works best. I had to find a balance between a dry mouth and an oversalivating mouth. I found that 2 mg makes my mouth very dry. I didn’t like the way the lower doses made my mouth feel. It is ironic that I need a drug to dry out my mouth because when I got my first symptoms of ALS my biggest complaint was a dry mouth.
On Wednesday night we went to a presentation by Stan’s Pain Management doctor about a treatment with a spinal cord stimulator. It really sounded like something that could help Stan’s foot and hip pain. The doctor said Stan could start a trial next week.
On Thursday at noon we watched a webinar about a new clinical trial for ALS to try for reducing inflammation around motor neurons. It sounded very enticing to me because it was a drug that is already used for rheumatoid arthritis and has already been proven to be safe.
Again this felt like balance to me because we both were able to see presentations about things that could help each other.
Later that afternoon I watched another webinar, this one put on by ALS TDI. It was called ALS Unfiltered: The Top Ten Things to Watch for in ALS Research in 2017. Stan couldn’t watch this with me because he took Andy for his driving test at the DMV. I will get back to the Top Ten Things to Watch for, but the driving test led to some other balance issues with our son. Andy didn’t pass and he was very upset. We went to Red Robin for dinner and played their trivia game on the tabletop kiosk for distraction. My gravity fed tube feeding takes a while especially if I don’t lean back (the fun trivia game kept me from leaning back). Andy started nagging me to “hurry up Mom. I still have homework.” Then when we got home Andy fooled around on his phone and told me he would start homework at 8:30. That time came and I had to remind him. He sat down with his math binder with his phone in front of him every time I looked over. I decided it was time to reinforce our original cell phone agreement that we had let slip for a few months. I asked for his phone at 9 pm. This created such an uproar in him that he was yelling and went in to wake up Stan. I threatened to shut off his phone service if he didn’t hand it over. This didn’t even help. I went to the computer and logged in to Verizon and got ready to shut it down. He kept it up until Stan got up, he handed the phone to me and then Stan threw him out of the bedroom. We could hear him crying. We later let him come in and I explained the rationale of the night’s occurrences plus his falling grades in the last few weeks. He agreed with me that he has a phone addiction problem, like a lot of teens do these days. We hugged for a while and he was still crying. Then I said I would walk him to bed. Apologies finally came and I texted him a screenshot of mine on my text to voice app on my phone so he could remember it.
I hope this whole interaction brings some balance to my son but I am sure we will revisit this again.
So quickly, the Top Ten Things to Watch for in ALS Research in 2017:
- Edaravone, a medicine that has been used for ALS in Japan and is waiting for FDA approval
- Tirasemitive, still in clinical trial
- Mastinib, still in clinical trial
- NP001, still in clinical trials
- NurOwn, a stem cell treatment awaiting Phase 3 approval from FDA
- AT-1501, a drug identified by ALS TDI, awaiting funding for clinical trials, currently NHP Safety/Toxicity studies underway
- Communication Devices (more details in a future blog)
- Precision Medicine, the ALS TDI program where they measure changes in ALS patients monthly to identify similarities in the different types of ALS
- There will be a new commissioner of the FDA and all of the candidates want to reduce FDA waiting times.
- ALS/MND Symposium in Boston December 5 – 10, 2017.
OK so back to balance. I followed up on the clinical trial that we watched the webinar on. When I emailed my interest to them, I received some pre-screening questions. I was not qualified because I take the drug Neudexta. (I had previously not been qualified for many clinical trials because of my feeding tube or my claustrophobia, which I thought I could overcome if I had to have MRIs for a promising study).
Stan had no blood clots and still had pain after taking the gout medicine. He went to his neurologist on Friday and discussed the procedure of spinal cord stimulator. This doctor told him it would be too risky for Stan on his meds which reduce his immunity.
So again, balance, in that we both found out we weren’t qualified. 😔 I told Stan he should be proactive and call his rheumatologist because he wants to try a TNF drug, whether or not our insurance will pay for it. He has an appointment this week.
On Saturday morning I woke up and heard that all the major highways that cross the Sierra from California in our area were closed. I thought that it would be a good day for skiing without the California crowds. This year is considered an epic snow year in the Lake Tahoe area. Our favorite and closest ski area is Mt. Rose Ski Tahoe. Their season total for snow so far is 558″! I offered to take Andy up. I am not skiing this year because it takes too much energy. I planned to sit in the lodge and work on this blog. I didn’t finish much but it was very social. I saw a friend from work, Osh, and we had a nice chat. A man asked to share my table to drink his coffee. We had a nice chat. It turns out his daughter in Southern California works in fundraising for ALS. I shared my blog with him and he will forward it to her. Then Andy came in for lunch with our friend Sam, from Stan’s work. He is a phenomenal snow boarder and he took Andy over a jump and they had a great time. Sam and I had a great conversation too – it was great to catch up.
This brings up more balance topics. The epic snow is great for skiers but it has brought with it major flooding problems to many of the surrounding communities. But the balance goes back to the positive side. We need a good snowpack to store water that will later melt into our reservoirs for our water supply. There have been so many drought years since I moved here in 1985. The ski areas survived because they are very good at making their own snow now. Now a negative thing to put the balance even – I just tracked a package that should arrive today but it is in California and with the roads closed no package today. It is something I need for Monday!
Other balance issues come to mind. School was cancelled Friday due to widespread flooding and roads that were closed. This threw me off my routine of doing my cough assist therapy and everything else I had planned to do. I spent the day making sure my son got everything done he had to do before he got to go dirt biking.
Another balance issue is social media, specifically Facebook. In the 7 or 8 years I have been on Facebook I had a personal rule not to discuss politics on Facebook. I knew that doing so could alienate half of my friends. I ignored others’ political posts. The new president who I will not name (like he who shall not be named in the Harry Potter books) has changed all that. I was so disgusted with him that I started posting negative things about him. I was disgusted with the results of the election but I knew I had gotten through other presidencies that I did not like and I lived through them. A #resist movement started and it seemed overwhelming how many things had to be protested. I liked Ariana Huffington’s essay on how to get out of the cycle of outrage in a Trump world where she said just like showing fear to terrorists makes them win, anger toward he who will not be named makes him win. She recommended using balance by picking one or two of the things you want to do to resist he who shall not be named rather than trying to do it all. I picked the daily action where they will text me one thing to do each day. So far it has been two days of asking me to make phone calls, which I can’t do. Today they wanted a contribution of $5 to offset their high telephone bill. Why don’t they use an unlimited accounts like most of us do? But contribute $5 is something I can do. So now I can go back to normal being not political on Facebook.
I also like Dan Rather’s HUH (Healing, Unity, and Hope) He encourages everyone to find someone with opposing political views and talk with them until they find something in common. I especially like this because two of the people I love most have opposing political views from me – my husband and my Godmother. My Godmother and I made a conscious decision to not discuss politics. Stan and I don’t discuss politics much either. When we do we are able to find common ground.
Another imbalance that seems unique to me comes from using my phone text to voice app, mainly at home. Sometimes I am typing a thought and someone asks a question in the middle of my writing. Then I have to erase what I wrote to respond to the question. I know that there is no way for them to know if I am texting someone or typing my blog or typing something I want to tell them. Also, when I use my Boogie Board I always run out of room to finish my thoughts and I write tinier and tinier. It drives Stan crazy. I could balance that by starting my writing at the top of the board.
There is usually not time to discuss the days events because everyone is so busy. Is there really a chance to get back to these days? Would we want it?