Stokes Sounds Off: Following through by posting the long-promised personal update (finally!)

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Wednesday, July 6, 2016

Following through by posting the long-promised personal update (finally!)

Hello, all! I'm at work now, but the phones are down. Since I have time to do so now, I am posting the long-awaited personal update.

We have had A LOT going on since I last gave a personal update. In between medical problems that have made life in general and getting to work in particular very difficult. To nutshell some of the developments, I will say that we discovered through a home and inpatient sleep study that I have sleep apnea. My pulminologist, who also oversees matters relating to my sleep, told me that I needed a CPAP machine and needed to use it every night. I have been trying to get one till I am blue in the face. Finally today, I was able to set up an appointment to pick up my CPAP machine and all the accoutrements tomorrow.

In the meantime, I have been having lots of really bad headaches lately. Sometimes they have been so bad I've had to go to the urgent care clinic and get an injection of some heavy-duty painkillers. In order to deal with this,, I have been working with my neurologist to resolve this issue. She took me off of one of the medications that may have been contributing to my extreme headaches and nausea. I am doing a bit better being off that medication, but the pain is still pretty overwhelming. Part of the problem with that is that I originally told my neurologist that I wanted to get off another of my medications that I felt might have been contributing to these headaches, but I've felt worse with being on a lower dose of that medication. So I had to call and get that straightened out as well. Another part of the problem is that Dr. Weinstein's assistant, Ron Cox, had to leave the job because he was moving out of state. She is hoping to get a new regular assistant soon. In the meantime, I have had to rely on the interim person. I should add that it's been my fault I've been in such pain, because Dr. Weinstein is going on the assumption she made based on my wanting to get off that other medication. I hadn't made it clear that when I took it in greater quantities more frequently, it does help a lot. So I inidicated today to the interim assistant that I was sorry I had inadvertently misled Dr. Weinstein and that I want to get back to regular use of the medication and use more of it. I am still waiting for news of her reaction to that.

I talked to my parents about this this weekend, and they mentioned that I needed to go back to my neurosurgeon and point out to him that I do better pain-wise when my shunt is turned up. It makes sense that him turning my shunt down every time we have seen him would be contributing to the problem. So I contacted his office, let them know the lower pressure might be contributing to my increased pain, and requested an appointment in order to get my shunt pressure turned up. In order to make sure to get this taken care of to my satisfaction, my care management nurse will be attending that appointment with Amy and me to ensure that I get what I want and what is best for me.

Another big part of the problem is that I am not sleeping very well. I purchased a new sleep aid containing melatonin and some essential oils, and that helps a little. However, some nights I have either forgotten to take or not slept well, if I sleep at all. There have been several days where I've been running on either little or no sleep. The CPAP machine should help me get my sleep back on track, because when I used one the night of my in-hospital sleep study, it was the best night of sleep I had ever gotten before or since.

I have had my testosterone levels checked numerous times, and as we keep me on the injections, my levels are normalizing but they are not where they should be. So I am continuing the injections. After giving them to me at the doctor's office several times, they gave me a prescription for serum and needles so I could have Amy do them at home. But every time she has done them, she has been distraught about having to poke me with the large needles. So we are going back to having them done in clinic, the only difference being that this time, I will bring my own serum each time.

The testosterone injections have helped in several ways, including weight loss. I have dropped 15 pounds in the last several months, which is fantastic. As a result of that, I don't fit into my regular trousers anymore. So we went on Saturday and got me 4 sets of corduroy pants.

I also wanted to do what I could for us, so I applied for and was deemed eligible for food stamps. We are getting a sizable EBT balance every month. This month was my first month receiving them. We were greatly surprised and gratified to see how much food can be purchased with those.

I had to deal with a HUGE hassle with the Department of Workforce Services (DWS). I received notification from them that my yearly review for my Medicaid was due. Since I had to call for a phone interview for the food stamps anyways, and since their website wasn't working, I did my review by phone. Several days later, I received notification that I had not completed my review and that, effective July of this year, my insurance benefits and my food stamp eligibility would be discontinued. I called the DWS repeatedly to get this issue resolved. Each time, I was told that I had done everything that was required and was good to go. But each time I subsequently looked at the DWS website, they were threatening me with benefit cutoff again. So I lodged a formal complaint with the DWS. I also contacted my congressman, Jason Chaffetz, who had intervened in a similar matter for me just last year. It did some good. My benefits were restored before the first of the month, which was gratifying. I just feel betrayed by the DWS because if I in my customer service job had lied to the members I worked with in the same way I had been lied to, I wouldn't have retained my job this long. So we will see what comes of the complaint I lodged. In the meantime, I will be in contact with the congressman's office to see if he still needs me to fill out the paperwork so that the DWS's misconduct can be investigated by them as well.

I have had a number of other medical issues, but we are working to get them resolved as well. It is a much slower process than I would prefer, but the good news is that things are looking up as each issue is taken care of.

I advised the Social Security Administration of my reduction in work hours. I was surprised when I learned that, even in spite of the information I gave them, they were still grossly overestimating my wages as being about twice as much as they actually were. I continued to be even more surprised as I read the letter telling me that because of their estimate, I would be receiving less than $150 for July. I wondered why they were still estimating my wages when I had sent my May pay stubs to them. I felt impressed to double-check that I had sent them. I found an envelope, partially sealed, and looked into the envelope, and there were my May pay stubs. By this time, my June pay stubs were available as well, so I sent them together in that same envelope. We got the envelope mailed off on Saturday, and today I called Vanessa Howell, my case manager at the SSA, to ensure that they had been received. I'm hoping they will be speedily processed and that the SSA will find that they have underpaid me and make it right by sending me a compensatory SSI check before the end of the month.

In the meantime, I had been anxiously awaiting the arrival of the October 2015 and April 2016 General Conference DVDs I had ordered. Something told me to double-check on that, and I discovered that the order had been mailed to my old address and was reported as being delivered. I checked with John Allen, my former landlord, and he said he hadn't seen anything come through. So I called Distribution Services to report that I never received the order. The first phone rep I talked to told me that since their system reported the order as being delivered, they couldn't replace it for me. I was understandably upset about being out the DVDs and the $15 I had spent to get them. I let her know that. She recommended I call the post office, because they were the ones who had reportedly delivered the order. She said she wasn't able to do anything else for me. I called USPS but couldn't get past the automated system. I had a feeling that I should call the Orem branch of the Post Office to see if USPS could do anything for me. They said they couldn't help me without the tracking number. I had to call Distribution Services again to get that information. The phone rep I talked to this time was much more helpful. He gave me the tracking information, said he shared my frustration and concern about the lost order, and was very empathetic. He wished me well in contacting the Post Office again. I did so, and miraculously got through to the same rep I had talked to a few minutes before. He looked into this for me and said that since the package was delivered to my old address in American Fork, I would have to contact the AF branch of the post office. I did so, and, according to the information they pulled up, the order had been delivered. The rep I spoke to there said she could do nothing else for me. In frustration, I kind of lashed out at her a little, saying that I was very upset about the fact that no one was taking my $15 loss seriously. She relented and said there was one more thing she could do: Check with the driver to see if he remembered delivering the package. She also launched an official USPS investigation into what might have happened with the package. I didn't hear anything at all about any progress on this today, so I will have to call them again tomorrow. I hate the thought that when things are bad enough for us financially, I may be out the $15 I placed to get these DVDs, and I have nothing to show for it.

In other news, the manager of our apartment complex said she had received a notice from our landlady that we needed to do something about our lawn or we would be in danger of being thrown out. She said the landlady had wanted to send us a registered letter, but she talked her out of that because she didn't want us to have to pay for it. I told the manager that we were aware of the problem but couldn't do much because our health didn't allow it. I told Amy what the manager had said, and she dashed off a text to her saying that we would gladly do something about the lawn but that in order to do so, we would have to water every day. Since there are water restrictions where we live (odd numbered houses can only water on odd numbered days, and even numbered houses only on even numbered days), she would either have to make an exception for us or live with our lawn being the way it is. The manager responded that if we were putting in grass, that was an exception to the rule and the lawn could be watered every day in that case. Amy shortly after began ripping out the weeds. I told her I didn't want her to overexert herself in doing so and that she needed to let me know if she couldn't handle it so I could get her some help. She tried to do it, but it turned out to be more than she could handle. I therefore requested that the ward give us help with this project. Ward members will be coming this weekend to help us get that done.

Our situation and all we are having to deal with has understandably put a strain on our marital relationship. Much to Amy's credit though, in spite of everything that's going on, she takes it all in stride and is very quick to forgive me.

When we found out we couldn't keep our newly acquired pet bunny, I broke down and cried A LOT. For a while, I was totally inconsolable. Amy comforted me, held me and told me it would be all right. I  felt a lot better about it today, and we actually were able to get several cute pictures of me holding the bunny and smiling. Today before the American Fork animal shelter closed, we took Rupert in. I hope he can find a good home. All things considered, I think I handled having to give him up very well.

Amy has been dealing with her own health issues for a while now, and it's getting beyond ridiculous that the doctor always tells her when we take her in to see him to take two Aspirin, get some rest, and call him in the morning. I hate that the doctors are bending over backward to deal with my issue but that they aren't taking Amy's symptoms seriously. Please keep us both in your prayers.

That just about does it for this personal update. Thanks to you all for your readership and friendship. I am better off for knowing you all and thank you for your interest in reading what I have to write. Until I post again, all the best to each and every one of you.

1 comment:

  1. There is so much going on for one person to cope with. In the case of the sleep apnea, a CPAP machine is truly the answer for any sleep disorders. My husband had one and struggled with using it for a few months until he finally gave in. Today, he won't go a day without it as it makes him feel refreshed. He's like a new person.

    Leonardo @ U.S. HealthWorks Medical Group

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