llcoolvad: (newer)
[personal profile] llcoolvad
Ugh. This hasn’t been the best year so far between my back and my aunt. Let’s start with my aunt.


She has been getting much better which is awesome! She’s off dialysis, and now off the ventilator. She’s still got the trach, but they’re testing her to see if she can swallow this week, so hopefully they can take out the feeding tube and get the trach out completely, also. At that point she could start physical rehab (instead of just respiratory), and move to a different facility. She's able to talk now, which is great, and she's mostly cognitively there (occasionally she's confused about recent history and what's happening—she is completely convinced one of her friends is dead, and of course he isn't) so this is all really good!

However! She ran out of Medicare and the hospital only gave us two days’ notice before it happened. They explained to us that how it would work is that she would have to private pay down all of her bank account to them until she was below the Medicaid threshold, and then they would apply for Medicaid and it would be backdated to when she qualified. To qualify for Medicaid you can only own one piece of property, one car, and have less than $2,000 in assets. Obviously she had more than that, plus she receives a pension and Social Security every month. What the hospital didn’t tell us, supposedly because they didn’t know, is that there is a trust that you can put assets into to shield them from just being spent, and to still allow the recipient to qualify for Medicaid. Thankfully we found an elder care lawyer who told us about this trust and I spent four days running around dealing with a gauntlet of lawyers, the insurance company, the hospital, the funeral parlor (because we had to pre-pay her funeral), and the bank. We had to get power of attorney first before we could do any of that. So we did that and my cousin and I got power of attorney and I basically had to figure out all of her accounts, pay her bills for two months, and send checks to various places. She now has a trust that will continue to pay her bills while she is alive, and then when she dies they will expect to be paid back from the proceedings of the sale of her condo. This is all very good, but she still ended up having to pay for at least four days of hospitalization out of pocket, which at $4,855 per day is a lot of money. And were very resentful that they didn’t give us enough time to deal with this. My cousin went and spoke to the hospital, and she seems to think that they agreed that the situation shouldn’t have happened. My cousin is a lawyer, which is a handy thing to have in a cousin.

None of this is fully resolved yet, as it takes approximately 45 days for the Medicaid process to be completed. It hasn’t been a full month yet, so I hope we did everything right. Because any day of delay costs her additional money. Once the process is completed they backdate to the day that she qualified, so that means the day that all the checks were written to get her bank account below $2,000. That should go back to March 22, but I don’t have any way of knowing that for certain. For now, I will keep doing what I can. I filed her taxes last week. How weird is it to do someone else's taxes when you can't ask them any questions? Super weird!

So the other sucky thing: While all this has been going on, I’ve had terrible back pains. In late January I finally went to urgent care to see about getting a diagnosis. They told me I probably had a pinched nerve, so they sent me to physical therapy for treatment. After three weeks of physical therapy where I basically showed no improvement, they suggested that I go to a spine clinic and see what they say. I couldn’t get an MRI right away because my insurance requires six weeks of treatment first. So I saw the spine clinic doctor at four weeks and had to wait two more weeks, see the spine clinic doctor again, and THEN I could schedule the MRI. The MRI determined that I have a herniated C7 disk, and when I finally saw their surgeon about it he suggested that I have surgery to repair it. His suggestion was to get an artificial disc instead of a fusion, which sounds kind of interesting so I think I probably will do that. It apparently gives you greater flexibility.

Untitled

(That pokey-out bit in between the C6 and C7 is the problem. The white line that it's poking into? My spinal column.)

However, this particular surgeon is based out of Salem Hospital, which does not have excellent rankings for neurosurgery. So I made a second opinion appointment with a surgeon at Brigham and Women’s, who I am seeing next week. He was recommended to me by Dr. Gawande as being good, and B&W is ranked #6 in the country for neurosurgery. I’ll take that. It will probably be at least six more weeks (after Tuesday appointment) before I can get surgery, so in the meantime I take three ibuprofen every six hours like clockwork. I also take gabapentin to help me sleep at night, and occasionally I will take a tramadol when the pain is too great. I had to stop going to physical therapy because I didn’t have enough sessions left, so instead I am paying one dollar a minute to go to massage therapy and get some relief that way. I like my massage therapist, so that’s okay. I’m spending $90 a week, however, so I’d really like to get this resolved soon.

Work has been particularly hard because this back/neck pain is sending radiating pain down my arm, my right arm—which is my mousing arm. It’s making sustained work difficult. Out of every six hour ibuprofen timeframe, I am getting approximately four hours of reasonably pain free time. The other two hours are the last hour as my ibuprofen is wearing off, and then the beginning of the hour when I am first starting to feel the effects of the new dose of ibuprofen. So that’s two hours in a row of kind of sucky pain.

(I’m very grateful that I thought to ask for Dragon NaturallySpeaking for Christmas this year. I just installed it and am using it to dictate this entry. I’ve been using the dictation on my cell phone for at least a year for texts and email and Facebook statuses, so the mechanism of dictating is familiar. I get pretty decent accuracy at this point. It’s only when I try to do something tricky or when I use slang that it really fails.)

So what I’m hoping for from surgery is the elimination of my back pain, and the ability to resume my life. I really haven’t accomplished much in the last four months, especially at home. Doing things like cleaning, laundry, lifting things, etc., are all very painful. Combining this back problem with my chest problem which still isn’t fully resolved (and never actually will be without another surgery), is making daily life annoying. The three things that hurt the most are putting on socks, cleaning the cat box, and driving. Trying to deal with my aunt’s bills and apartment when I can’t really drive down to Bridgewater often has been a challenge. Also I’m dealing with a lot of guilt because I don’t go and visit her as often as I clearly should (especially when you consider that I am the person who lives in Massachusetts). It’s just really brutal to drive for a full hour. I can manage local driving because once I get out of the car the pain will die down some.

The last few weekends I’ve been managing to get a few things done around the house out of stubbornness and a little panic. There have been projects that I haven’t tackled since before my last surgery—so over a year and a half. I needed to clean out the pantry, I needed to deep clean the living room, I needed to rethink how my bedroom is set up and what items I keep in it, etc. So far I managed to clean two thirds of the living room, most of the pantry, and half my bedroom. My goals for the next little while before I have surgery, which as I said I really really hope is within the next six weeks, is to finish each one of those projects. The living room won’t take much, just a little bit of physical work. The pantry will take a little more work because while I’ve cleaned it and tidied it and washed the floor and organized the pots and pans, etc., I have not gone through all the food to pull out anything old. And then my bedroom will be the hardest. I have a chair that is full of stuff that I don’t have a home for. That doesn’t sound like a big deal, but it’s a deep large chair and a half, it has an ottoman, and both parts of it are full of stuff.

Tomorrow I have massage therapy in the morning. I’m hoping for a good day pain-wise tomorrow. If that’s the case I hope I can get a lot of things accomplished. I still have regular chores (shopping, laundry, errands) in addition to these secondary projects. So I have to get all of those done tomorrow first, and then I’m hoping I’ll have some energy left to work on these projects. I feel like I’m running out of time, even though it is far more likely that I won’t have surgery for at least eight weeks. I’m trying not to think about that because that much time in this much pain makes me want to cry. My physical therapist said at one point when I said something like I was feeling like a baby for being whiny about the pain, “nerve pain is no joke” and really she’s not kidding. Nerve pain is especially offensive because there’s nothing actually wrong with the parts that are hurting. I get tons of pain in my forearm and my elbow and there is nothing wrong with my forearm or my elbow. And because it aches, I am constantly rubbing it, which makes it hurt more. Because of course I’m rubbing on the nerve. And yet I can’t stop myself, because it’s a normal reaction to something being sore.

I read my last entry before I wrote this, and I was impressed with how much I managed to do last year while still recovering from surgery. I took several mini vacations, I went to museums, I went to concerts, I had dinner with friends, I basically had fun. This year I’ve done very little of that. I’ve been to perhaps two movies in the theater, I went to one concert (2Cellos at the Wang Center in Boston), I’ve seen a couple of friends a couple of times, and that’s it. I am planning to go to the Cape as usual, depending on surgery scheduling. Not sure how I’ll do on the drive there, but I’ll just have to deal. Assuming it is six weeks before I have surgery, that means I won’t have surgery until the middle of June—and then my recovery will take at least until the end of June. That only leaves me half a year to kind of rack up good fun experiences. I’m told that the recovery for this surgery is nothing like the recovery from my chest surgery. Everyone says that having your chest cracked is the hardest surgery to recover from. So this disc surgery recovery should be basically a walk in the park. I really want to get that walk started!



OK. I will stop whining now. My problems are not so large. Pain just makes everything bleaker, you know? Feh.

Date: 2016-04-24 03:51 am (UTC)
From: [identity profile] livingdeb.livejournal.com
My heart is aching for you. I wish you and your aunt (and your aunt's finances) the best.

Thanks for the update!

Date: 2016-04-24 05:19 am (UTC)
From: [identity profile] elevengirl.livejournal.com
I know nerve pain is the worst. You and your aunt are in my thoughts...I hope for relief all around soon!

Date: 2016-04-24 05:02 pm (UTC)
From: [identity profile] randy-byers.livejournal.com
Best wishes on the spine repair. It all sounds incredibly unpleasant. Best wishes to your aunt as well. It certainly sounds handy to have a lawyer in the family in this situation!

Date: 2016-04-25 02:33 am (UTC)
From: [identity profile] llcoolvad.livejournal.com
Thanks, Randy. I hesitated to even post as I know so many people face much worse things every day, including you. I hope you're doing ok. A coworker's parent is having his leg amputated, and it made me think about how I'd feel if my condition was something that couldn't be resolved at some point. I'm not sure that I'd deal at all well with it. The people who have constant pain now definitely have my sympathies, anyway.

Having a lawyer in the family is good, although it means that things that you would probably just let go become THINGS. But honestly, it's all for the best. Apparently they are under no legal obligation to inform that insurance is running out beyond the two day window. Isn't that nice? I think that needs to change immediately.

Date: 2016-04-25 02:57 pm (UTC)
From: [identity profile] randy-byers.livejournal.com
I'm in the same boat you are. It's hard to ignore the fact that a lot of people have it much worse than I do. And I honestly don't know whether a slowly developing terminal illness is worse than feeling pain every day. I kind of doubt it. But I suppose that's for the judges in the Illness Olympics to decide.

Anyway, yes, two days notice that your insurance coverage is running out is just wrong. I don't see how that even benefits the insurance company.

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