I really don't know how my parents and in-laws and all the people in the generation before me manage to live such active, busy lives. My life is busy, that's for sure, but sometimes I just don't know if I can manage it. I really don't know how they do it. My parents and in-laws are inspiring to me.
Some of it has been spine/back/pain related, I know. It's hard to fight the pain when it gets bad. There is a ring of burning pain around my trunk just below my ribs. It's been difficult to diagnose because nothing in that area seems to indicate there is a problem there. We were finally able to get insurance approval for imaging in my cervical region, and that showed some degeneration that is likely the source. Any location in your spine has all the nerves for pain and functionality for everything below that area.
I am exceptionally grateful that there are nerve medications that help with the kind of pain I have. Neurontin or generic Gabapentin is the most common one prescribed. I took that for some time but now I take Lyrica or generic Pregabalin, which works a better for the type of nerve pain I have. It's not a narcotic and is what I would consider a "good" medication in comparison to a lot of the other options for pain in general. I liken it to taking Tylenol for a headache—there are no other side effects, the pain just gets better an hour after taking it.
I fight taking any and all medication. I don't like talking about it because it is a topic that brings a lot of judgment from people. There is a lot of judgment from people who hear medications are "addictive," for instance, or are "bad" and should be avoided at all costs. Typically those people are well-meaning in their comments but haven't dealt with constant, debilitating pain. People associate "addiction" with a medication instead of a state of mind. People who need heart medication or insulin aren't labeled as addicts, but when it comes to pain, the distinction between a necessary dependence and addicitve drug-seeking behavior which is not needed or necessary to combat chronic pain.
If it sounds like I'm ranting, I am. There is an opioid crisis in the country because of people and physicians who take or prescribe medications above and beyond actual need. Those people make chronic pain patients jump through hoops every single month because we have to have monthly appointments to get medications prescribed that only last thirty days, even for some medications that have no addictive profile to them.
Then, once you have your monthly appointment, you have to deal with the insurance company, who denies medications regularly citing prior authorization is required. Your physician and their insurance people have to fight to get a medication you've been taking for years covered for sometimes only one additional month. Once the insurance company approves it, which might be after the date you need it which leaves you with no medication after the thirty days are up, you have to deal with the pharmacy. Sometimes medication are out of stock. They keep things in stock, but only the general amount they commonly dispense and if new prescriptions appear they have to fill them. Which means you might have to wait days for something to come in stock. Or you can get a partial month filled, but the rest of the prescription is lost due to the medication class and then you have to go back to the doctor's office, and then back to the insurance company who may not approve the second prescription because they already paid for one that month—even though it was a partial.
Then medications change. I was on a new medication that was a different formulation and was much, much less medication that just worked better with the nerve pain I have. It was over eight hundred dollars per month with the insurance coverage, because it was new and there was no generic. But there was a coupon and I could get it for $125 per month—and it was definitely worth that.
That coupon just went away, so we're now trying to find an alternative that works as well. And that's been challenging and stressful and fighting with the insurance company and dosages weren't right and I was spending hours and hours in the day because I was just in too much pain. Which makes me feel like a terrible mother and wife with my children understanding their mother needed to be in bed a lot. They spent a lot of time with their father and I would lie in bed and cry, because I just feel so broken and useless.
Things are getting better, but now my provider thinks I have a mental health issue. I yelled at him (after all this time we are friends and enjoy catching up on each other's lives each month) saying I was a happy person. I have a wonderful family. We have friends that are just the best. We aren't in financial difficulty and I have the best husband in the world. But I CANNOT FUNCTION right now and can we please get this fixed?
And we've been trying, but it's been five months and I've about lost my mind. There is more complexity to the situation but that's a high-level overview. Before this current month's visit I changed my medication to what I thought would work. And the small change I made did indeed put me back to close to what I was before all this mess with insurance company and medication with no coupon now. I was chastised by my doctor for doing this, but I told him I was tired of having to do thirty day tests that we couldn't address until the next month (even though he said "call me, we'll fix it" because I tried that and it is not simple.)
Actually, let me talk about that a bit. Two appointments ago I had a laundry list of all that had happened, because my doctor has a lot of people he sees and I could summarize better and let him see how things had been happening from my side because I absolutely have been on top of things but I can only control my side of things. But when he walked in he launched into a story about his mother having multiple strokes and how he had to leave to go take care of her. He was so distressed about it and I was a good friend and listened. And I didn't complain when we got to the medication change because there just was no time left and he had other patients he needed to get to.
This month I made a change, I pushed back and said it answered questions and we didn't have to wait another month to see. He had some insurance issues (of course) but called me two evenings later at close to eight o'clock, still at the office. I calmly told him that I hadn't gone into things because he needed to talk last time and he felt really badly. He really did make me angry though, accusing me of taking incorrect dosages and saying I had refills left until he looked and I was (of course) taking the correct dosage and had been out for close to a month and had been stuck taking old medication at a lower dosage. And yes, I had called his office. I had even talked to the other doctor when I was there getting an injection. That doctor talked to my doctor and assured me that the refill was being called in right now.
But was it? No, because he conveyed the message incorrectly. And my doctor never called to ask me what I meant, he just did nothing. I called, nothing happened. I had the pharmacy request refills to their office, nothing helped. And yet my doctor contends that it is "easy" and "they can handle it, I shouldn't worry". And yet things go wrong at least two-thirds of the time and it is the most stressful thing to me.
Easy is the one word I would never use. So I've dealt with five months of reduced activity and have felt like the worst parent and spouse. Hopefully, things are better this month with the change we made that I suggested. I just want to be able to feel normal or I can take some pain, I'm used to it. It's just when it gets so bad that I can't fight it and function. Hopefully things will be back to normal. I would really like some normal.
The Big Boy Update: My son has not been too terribly angry about having to go to sleep earlier this week. He starts school on Monday and he's not going to sleep until eleven o'clock now and the next three days we're going to have him go to sleep even earlier. He's still getting up very late, even though he contends he doesn't need that much sleep. He actually does.
The Tiny Girl Chronicles: We finished Ghostsitter, the Audible Original production. There are three books and we loved all three. The disappoint thing is there are a lot more but the author is German and we don't speak German. We are hoping the next installment will be coming out in the next few months. My daughter really wants to know what happens.
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