Road Trip to Redding

I’m going to start with this link, please take the time to click it and read the article–it’s not long!
Start Where You Are

This was the comment I posted for that article:
“Thank you, thank you, thank you! You have my deepest gratitude for your words today. I need(ed) them so badly!
Obviously, I am a sufferer of chronic pain–and the limitations my various diagnoses have forced on me. I have also had my stress-anxiety disorder tested to its limits as I am *still* fighting for SSDI (4 years and counting; could be another 4-6 years) AND I am dealing with a Long Term Disability insurance company that has stopped benefits several times because they think I can and should go back to work.
So this article hit me hard…because I am preparing to be transported from Eureka to Redding (a 3 hour tour of the winding-est roads and mountain terrains I’ve seen since we drove up from Sacramento 17 months ago). The LTD insurance company wants an independent medical evaluation before making what will be an absolutely final decision about my case. Part of the reason they don’t want to pay (aside from the obvious of trying not to pay ANYONE) is that if they make the decision in my favor, it means they are then obliged to pay me until 2028, when I turn 67 and go onto Social Security (“retirement” rather than SSDI disability). If I do receive SSDI, the insurance company will pay the difference between SSDI and my LTD benefits–a not insignificant sum and one that would be totally wonderful to have as part of our limited and very set income. SSDI does not give much of a raise each year and there’s no bonuses or overtime available. Sigh.
As it is probably obvious, I am in “a state”, making sure that I have the medical documentation I have been asked to bring to the office–it’s only about 2 inches tall, not a very big pile of medical histories at all… I have the added stress of preparing for a night away from home, because I cannot sit for 3+ hours, see the doctor (scheduled time is 1 1/2 hours, plus any waiting I have to do) and then have to make the 3+ hours ride home. The insurance company is providing transportation and lodging (at the local casino! haha … because it’s cheaper than the Holiday Inn next to the doctor’s office) for me–and my 6 foot tall teddy bear, aka my husband. That’s really great and the casino hotel looks awesome–it’s very new, just about 1 year old. BUT. It means I have to pack a bag, even though it’s a small one–preparing adequate medications in travel containers, carrying our CPAP machines and the distilled water for them, and entertainment for the hours between the doctor’s visit (let’s say 5 pm) and being picked up to go home, 11 am Wednesday morning. My mobility scooter is going with us, so I have to remember the charging cord for it…
In other words, I am feeling rather overwhelmed and VERY anxious, stressed out about tomorrow.
We have errands today to finish up some preparations–we both need more nose spray (or we can’t breathe), he’s got meds to pick up, and we have to check our mailbox in the local UPS store to get meds for me, and hopefully, the San Francisco VA Medical Center has sent me the hard copy of ALL of my VA records, along with a CD of the imaging that’s been done–which is totally necessary, as it shows the degenerative arthritis in my spine and the bulging or missing discs in various sections of same.
It’s sort of ironic that the medical thing that will probably get me declared “truly” disabled is the sad condition of my spine, and not the fibromyalgia that covers every other symptom. But I’ll take what I can get.
Reading your article as I said truly gobsmacked me–and I truly needed that. “Start where you are” is great for the daily life (and as a Buddhist myself, I try really hard to find that kind of living in the moment mindset) but I especially needed to hear that today, for today and for tomorrow. I think that once I’m finished at the doctor’s I will calm down a great deal, because my part will be done, there’s nothing more I can do to affect the company’s decision–and with this, they have a very limited time to give me the answer, so the endless waiting and hoping will no longer be endless. Regardless of the decision, the “not knowing” will be over and that in itself is a great removal of anxiety and stress.
I am grateful to belong to this community–it sucks that we all suffer something beyond “normal” life, but at least we have each other! And I appreciate your letting me post this wall of text to say sort of out loud what’s going on in my head–which helps me deal with it. Knowing that I’ve now got a lot of sympathetic and kind thoughts for me happening in the cosmos of chronic illness sufferers…means more than I can say. Thank you, all of you–and especially Toni for giving me the reminder that I can face anything, particularly stressful or anxiety-producing, with the mindset of “Start where you are” and then “find workarounds”. (PS–Like Toni, I am right-handed. I am becoming more and more ambidextrous as I have to use that left hand/arm more often. It’s not a bad trade-off.)
Blessings, peace and joy to you all. All we truly have and can live in is this moment, right here–moment by moment.

Saves me from having to retype everything and lets you get informed about the way too exciting events I’m dealing with this week. I’ll update this when I can after I see the doctor. In the meantime, cross your fingers and help me hope for, wish for, a positive decision that will immediately decrease not only my gargantuan stress/anxiety level, but also Beloved’s. It means living within OUR means and not within the generosity (very much appreciated but also a bit… dependent as a child and no longer an adult…) of his parents. It means the difference between being able to get the bare necessities and being able to afford some of our “wants” without having to choose between them and eating. And we would get that anxiety not only alleviated, but smashed because the insurance company owes me 13 months of pay if they approve it–and then the monthly checks begin. I try not to think about that chunk o’ money because we might not get it…and I don’t want my hopes up that high!

So that’s where I am, we are. I can use all the good juju, prayers, good thoughts, positive energy, candles lit, whatever it takes to make the situation have a good and successful end. Thank you and watch for the updates, which will, all the gods willing, be happy ones!

Peace out!

(Part Two)

A Family Vacation, Complete With Mooses and Other Excitements

Starting before the vacation: I took Beloved to the hospital on Friday, Feb 28 with a fever of 103 degrees, chills, vomiting and pain. Before he was done, he had been given about 14 litres of fluids (IV), pain meds (IV) and super antibiotics (IV). He figures he got stabbed with needles about 40 times in the 5 1/2 days he was there. If he wasn’t needle-phobic before (and he was), he is absolutely needle-phobic now. Doctor’s diagnoses: strep throat and cellulitis. (Medical note: cellulitis is an infection (“-itis”) in the cellulite layer of the skin. It has nothing to do with weight as both fat and skinny people can get it. It hurts like hell.)

We were concerned that he would not be out of the hospital before Thursday, Mar 5, but he managed to come home on Wednesday. So he got a better night’s sleep in his own bed before we began the Grand Tour of Local Restaurants.

Because of our disabilities, and especially with him just out of the hospital, we can’t really “do” all the tourist-y things when people come to visit. We can’t walk up the Avenue of the Redwoods, go into most of the shops in Old Town Eureka, or any other activity that requires standing/walking for extended periods of time. (And for us, extended is pretty much anything over about 15 minutes. Sigh.) But we bygods make sure that our visitors are well fed, and in a wide variety of cuisines.

So Beloved’s parents (hereafter referred to as “MIL”, Mother-in-love, and “FIL”, Father-in-love) landed in Sacramento on Wednesday the 4th, spent the night there and then drove up to Eureka on the 5th. They got in about 5, giving us just enough time to get them settled in the hotel and then taking them out to the beach for the sunset. (A tradition for us, since the first thing we did once we got settled in the hotel upon *our* arrival was to go the beach for the sunset.) And then we took them to the same place that was our first introduction to Eureka, Annie’s Cambodian Restaurant. Amazing and good, not quite Vietnamese, not Thai, not Laotion, but a sort of blend of all three. Annie’s crab puffs are the best we’ve ever had. Of course we also established the sharing all around of every dish, something done pretty much everywhere we ate in the 9 days they were here.

Because MIL and FIL had a car, they could do some sight-seeing on their own and they did so enthusiastically. They drove north to the Avenue of the Redwoods; walked up the hill and back down again, went on the skyway tram to view the trees from above. They were going to drive on up to Oregon (a short jaunt) but the fog came rolling in so fast and so thick that the decision was made to come back to Eureka. What’s the point of going anywhere when you can’t see anything?

They did a lot of poking around in Eureka on their own. When we joined them (mostly at meal times) we rode with them, rather than taking two vehicles everywhere. So MIL, who does the driving, got a good feel for the traffic and how the streets are laid out. That’s a really good thing because they are considering moving out here, to be near to us and to get out of the hell most people refer to as “Northern Virginia”, or NoVA for short.

EurekaSailorWe got to see the old sailor sculpture in the harbor, something I had only seen pictures of before. He is much bigger than I was imagining and I had Beloved take some photos so that I can attempt to paint or draw him. I’m sure that he’s been recreated in pretty much every medium, but I haven’t done it yet so I’m not worried about other people’s paintings or sketches of him. Driving up to the sailor took us through some protected wildlife lands, actually fenced off with signs about not crossing over the fence. We saw a pair of elk, which my MIL laughingly refers to as “mooses”. So now we’ve got a new word for when we drive out looking for wildlife… we are looking for those mooses!

Like I said, we began with Cambodian food. We also fed them Chinese (two different restaurants, one which does “comfort” Chinese, the sort you’d be used to if you ate Chinese food in the 1970’s; the other is familiar but doesn’t fall under the “comfort” heading. They also do sushi, which we made his parents try…and it was not something they really wanted. That removed the two sushi restaurants off of our list.); we fed them Vietnamese, Thai, Mexican, Greek, German, GREAT steaks, “American Diner”, pizza and one place for organic breakfasts and another for incredible bagels. We also showed them our donut shop which is run by Asians so you can get an order of Chinese food and then get a couple of donuts to go with it. They are, by far, the very best donuts I have had in a very long time. Dunkin’ Donuts got NOTHING on “Happy Donuts”.

We did show them some mundane things, like Costco, Walgreens, RiteAid and our Co-Op grocery store. If they move here, they’ll want to know where things of that nature are located. We also did some looking online at some rentals, to help them understand that with the enormous decrease in the cost of living (by coming to the West Coast, specifically Eureka), they can afford a 3 bedroom house for significantly less than they are paying for a 2 bedroom apartment in NoVA. And by significant, I mean anywhere between 4 and 6 hundred dollars per month less. We were not subtle in our hard sell, trying to encourage them to make the decision to move here, even though our friend had suggested subtlety. We don’t do subtle.

We were glad to see them–it had been almost a 1 1/2 years since we were last together, right before we moved. We had a really good time with them (and we ate really well!) but the physical toll was tremendous for both of us. I figure a healing and restoration time of at least 3-4 days, possibly longer. Fortunately, we have a minimum of appointments this week.

We had actually started our physical therapy (pool therapy), but with Beloved having a bazillion holes in his skin, I cancelled our sessions for last week and this week. We are scheduled to return next Monday, and we’ll see if we can make it. I need to call my psychologist and get an appointment with him, since I had to cancel the last one. Beloved sees his PCP, partly as a follow up to his last appointment with her, but also as a follow up from being in the hospital. He also has group therapy and his gaming group on Friday. So it’s going to be a very quiet week.

MIL and FIL took us shopping on Saturday at Costco and Co-Op to refill our larder and refrigerator. So we’ve got food–and we’re still working on leftovers–but how much cooking either of us is up to…is a good question and I don’t have an answer for that right now.

When they arrived, MIL handed me an Adroid tablet that FIL had gotten as a “retirement gift” and they couldn’t make it do very much. I’ve got it up and running, with various apps that I wanted and I’m pleased with it. Except for one thing: I cannot, CANNOT, make the damned thing acknowledge the 64G SD card I put in it, except as a storage unit for music and photos. And I’ve got enough apps that the internal memory is pretty much full; I’d like to move some of that over to the internal (already there, can’t be changed out) 4G SD card, but it doesn’t seem to want to let me do that. There’s got to be a way, otherwise no one would take the tablet because it wouldn’t/won’t hold all the apps wanted. Oh well, it’s an IT conundrum that I will continue to wrestle with.

I was very glad to have it because it was a calming thing for me to be able to use it, thereby tuning out all the people around me. My pain this week was high enough that even my Vicodin didn’t do much more than tone it down; with high pain comes a vague nausea, so I was eating just a little bit of this and that most of the week. I have had tremors most of the week, but especially during times of higher anxiety. When we went to get steak (at a place that is very carefully designed to look like a dive bar–but it sure isn’t because the bathroom is immaculate!), I actually had to put in my earbuds to block all of the noise. I was on the verge of tears without them. They worked so well, I have gotten a box of actual earplugs, in pink because they’re made for the ladies (we have smaller, more dainty ears!) and they came with a holder, so I can keep a pair in my purse and use them as needed.

Regarding the tremors: I talked to my dad about 2 weeks ago and we got to comparing ailments. He has tremors (bad enough that he can no longer make jewelry) and he suggested that what I have are Essential, or Familial, Tremors–something that is inherited 50% of the time if you have a parent who has them. The doctors don’t know what causes them and there’s no real treatment, although there are some medications for people whose tremors have gotten significant enough that they are embarrassed by the shaking, like when you’re out with people at a restaurant. I know that I have problems holding a fork steady without being stressed… add in the anxiety and I can barely get any food in. Takes two hands–one to hold the fork and the other to hold the food on the fork. I use my natural eating utensils whenever possible–you know, my fingers!

I will be asking about my tremors at my next PCP visit, if only to get the proper diagnosis added to my (ever-growing) list of diagnoses. And speaking of doctor’s visits, my long term disability  (LTD) insurance company (Reliance) has found a doctor who will do an independent evaluation of my condition so that the company can make an assessment about whether I am really disabled or not. And if I am really disabled, according to them (because I am, whether they want to say it or not), they will send a check with a year’s worth of backpay, and then continue with a monthly check. And if I get SSDI, the LTD will pay the difference between SSDI and the insurance benefits, which means about $400 per month more. We sure could use it.

I have two weeks to gather any paperwork (like my health records) and fill out the forms the doctor’s office sent me. I think it’s the new patient forms–and there’s all kinds of mentions of being able to go after the patient for money if the insurance company doesn’t pay for it. HAH! They can try. We already have about a quarter of a million dollars in combined *unpaid* healthcare costs. We’re going for bankruptcy… hate to do it, but we need to “wipe the slate clean” so that we can eventually qualify for a mortgage. I have a pre-approved VA loan, as long as what we want to move into meets their requirements. Needless to say, we need our home to be ADA compliant–and I might start looking around to find out what kinds of grants we can get that would help with the costs, especially since we’re talking about getting a new house. We’ll buy land and then have a manufactured home delivered there. The VA’s requirement for railings on every stairway will not matter, since we’re going for a single floor.

I’m not sure what was harder to deal with this past couple of weeks: the pain or the stabbing awareness that I can no longer do a LOT of things I took for granted as recently as 2 or 3 years ago. Watching my MIL (65 years old) and my FIL (almost 80) walking into the stores, carrying OUR stuff upstairs so that we wouldn’t have to…real slap in the face, let me tell you. Makes it very easy to slip into despair, since I’m already chronically depressed. I really appreciate my meds because without them…and I don’t mean the Vicodin. So recuperation, such as it is, consists of keeping my movements to a minimum to help control the pain as well as doing meditation and some self compassion exercises to help control the negative feelings. (Check this out, from Toni Bernhard: How to Talk to Yourself . Toni suffers from chronic illness, but also uses her Buddhist beliefs to find that Middle Road, even for us, who are having to ride an accessibility scooter on that road.

So that’s where I’m at, just trying to keep on making it through life, one day at a time.