"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘Ranty’

Been awhile since my last rant…

Ok, I have tried to keep the ranting to a minimum – there are better things to offer the world than me being mad about this, that or the other thing. However, I need to vent about this somewhat inconsequential thing because it really rubbed me the wrong way. Still mad a couple weeks later…

Y’all know that Em is on Diamox via the Driscoll Theory. September will mark 3 years on it and it literally changed her life. Y’all also [probably, hopefully] know that Diamox affects the CO2 levels: to combat the level dropping and to ensure that the Diamox will continue working as it is intended, one needs to take baking soda. (Not gonna get into the science of it, but you can look it up.) The easiest way to take baking soda is to just purchase some tablets – you can make your own capsules but it is kind of a pain in the butt.

Sodium Bicarbonate Tablets, AKA Baking Soda Tablets, the non-controlled substance. 

We got Em on baking soda, unfortunately after her CO2 levels dropped instead of being preemptive about it, several months after starting on the Diamox. After struggling with making capsules for a while, I eventually caved and went to Walgreens to procure some. Walked up to the pharmacy counter and said, ‘Do you have baking soda tablets?’ The nice young man hemmed and hawed for a bit, trying to figure out exactly what I needed, then said they did and asked how many I wanted. No prescription needed, obviously.

You can buy the darn things online. Seriously. Sodium Bicarbonate is not exactly a restricted substance.

So, every month or so for the last 2 years, I have popped into Walgreens and bought 200 baking soda tablets without any problem whatsoever.

Until a couple weeks ago, when I came up against the New Sheriff in Walgreens Town (aka the new pharmacist). Who adamantly refused to fill my request because I did not have a prescription. For BAKING SODA TABLETS. My informing her that I had purchased said tablets for over two years at that very pharmacy, not only without a prescription but without EVER being asked for a prescription, made no impact on her stance. She said she could not open the bottle of baking soda tablets without a prescription – it was against regulations. So, either she is full of it or the handful of pharmacists who have filled my order for the last two years were breaking the law. (I will give you three guesses as to my opinion about that!)

She magnanimously offered to call the doctor and get a prescription for it – at 7:45 on a Thursday evening. I more-or-less (possibly less)  politely informed her that I really doubted they would be in to take her call. I told her I was leaving on vacation and my daughter had to have them before I left. She offered to give me enough to get through the night. I refrained from pointing out that she certainly wouldn’t do that if a customer said, ‘golly, I don’t have enough Oxycontin to get me through tonight – can you give me just a few to get me through?” So, if she was going to open the 1,000 count bottle and break the “rules” to give me enough baking soda tablets to “hold me” until I could get a prescription, why on EARTH could she not just give me the 200 I was asking for?

Ugh.

We had priced the tablets at the hospital pharmacy when we first started getting them and found out it was much cheaper to get them at Walgreens, but when the New Sheriff in Walgreens Town refused to provide them, we had to go through the Reid pharmacy. Over $5 for the equivalent of 50 tablets (they only had 325 mg tabs in 100 count bottle), not even enough to get Em through a whole week. And, being half the size meant she got to take 6 pills instead of 3, which she was thrilled about.

All because some crazy lady decided she couldn’t sell me baking soda tablets. Seriously. Makes me want to pull my hair out. Or, purchase a capsule filling kit, take it with me to Walgreens, purchase a box of baking soda at the pharmacy, then open it right on her pharmacy counter and proceed to make a few dozen baking soda capsule in front of her. Pointing out of course, that this is the controlled substance she wouldn’t sell me.

Sometimes, on the journey of living with chronic illness, it is the little things that really get to you. Little things like baking soda tablets become really big things. We juggle so much worry and fear and pain and uncertainty, frankly, with a lot of acceptance and, most of the time, dignity. But, to have to fight and claw over something as small, yet vital, as baking soda tablets is just too much.

We have it worked out now and I know I really should get over it. My mom ordered (without a prescription, mind you) a couple 1,000 count bottles so we won’t have to worry about it for months and that is a nice thing. Walgreens has lost my rather substantial baking soda tablet business, so if they go bankrupt and have to close their doors, you will know why.

But, although I know it is all good and I should let it go, I still have this urge to prove my point to the lady at Walgreens…

I wonder if a baking soda volcano on her pharmacy counter would make an impact?

I picture this, on the pharmacy counter, minus the pan, plus me laughing hysterically.

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Breaking up is [not] hard to do…

Dear Dr. B,

I know we have been seeing each other for a long time – you have been my kids’ doctor for 16 years, in fact. Because you have been such an fixture in my life, I don’t quite know how to say this, so I will just come right out with it:

I am breaking up with you. It’s not me, it’s you. I am just not that into you anymore. No, I really don’t want to remain friends. I am quite sure there are other fish in the sea and I am willing to take my chances.

I stayed with you all of these years for the sake of the children, thinking that consistency would be good for them and for me. It was rocky at times – we had our moments, even early on. But, when it was good, it was really good. Those times that we actually worked as a team felt so right. Unfortunately, it hasn’t felt right for quite a while now and I need to move on.

I have to be honest: I am sick and tired of doing all of the work in this relationship. For years, long before EDS came into our lives, I have been the one who researches and brings my findings to you, hoping you could help with whatever was going on. Let’s be honest, I have figured out pretty much every single issue my kids have ever had and had to go out of my way to prove it to you, each and every time, when you should have figured it out on your own without me saying a word. And I am getting darn sick and tired of paying you for this privilege. That you abuse me with your rolled eyes and derisive snorts when you are in your I-am-the-doctor-and-you-are-just-a-silly-little-mom mode is wrong and I am done taking your unprofessional crap.

Then there is the inescapable and unforgivable fact that you missed some really important things that were right in front of your nose the whole time. Like, for instance, when you routinely told my kid for years that she was ‘obscenely healthy’ although she had a serious genetic condition that you should have caught and didn’t. Like the fact that every single time the nurse recorded Em’s head circumference from the time she was 6 months to 2 years old, the evidence of externally communicating hydrocephalus was right there and you ignored it, to my child’s everlasting detriment.

I have had a resentment regarding these and other issues that initially just quietly bubbled up at times, then it began simmering – now it is boiling furiously. I will no longer give you a pass for what you missed. You had a chance to make my kid’s life better. You didn’t. Now I have to try to clean up the mess you made. I will do that without you. I won’t sue you, although I am starting to think you deserve it, but I will forever resent you for what you could have done and didn’t.

Our time together Wednesday was the last straw – you had one last chance and you blew it. I bring my daughter to you, worried and requesting help. You know she has a whole lot going on medically, not that you have contributed much to her care. Her vitamin D level is a 6.1 – severely, dangerously deficient – and you give her a measly 2,000 IU of vitamin D a day. 14,000 IU a week, when she should be taking 50,000 a week to try to aggressively bring her level up. You were  absolutely right about one thing:  “this process will take a while”-  obviously,  if you only give her a quarter of what she should be given, she will never get to a therapeutic level, she will continue to feel horrible and be at risk for serious health issues. Another 6 months or more of her life wasted. Thanks for nothing. Again.

When we talked about GI issues and discussed her poor absorption and  how she has lost 20 pounds because she has a very poor appetite and nausea – you tell her that she is in the upper range of weight for her age so she has room to lose weight and there is no need for concern. (Which is total nonsense in every way) The worst is this: Translated into the language of a 13 year old girl: You are totally, horribly fat. Thanks so much for the opportunity to develop a poor body image based on a thoughtless, passing comment – we totally needed that on top of everything else. The everything else being gastroparesis, which I am not positive you have ever heard of.

Then there is the fact that I mentioned that my child has pectus carinatum, her ribs and back are wrong and she swears her leg bones are not right – in the context of severe vitamin D deficiency which comes with softening of bones and bone deformities. And you just look at me. And say we just need to supplement her vitamin D a bit. You never even offered to examine her. You allowed a child with a debilitating medical condition to walk away having never examined her. I have no polite words for what I think of this.

When I asked for a referral to a pain psychologist – someone who specializes in chronic illness to help us navigate this journey we are on, you tell me to find someone who can help – you would be happy to refer us, but you would have no idea where to start looking. Really? Isn’t that what I am paying you for? Isn’t that your job? To know precisely where to start. You are the doctor and I am ‘just’ the mom. I come to you for help with the things I can’t do on my own. This isn’t the first time you have let me down – it is, however, the last.

I could go on and on, but, really, what is the point? This has been coming for a long time. We have irreconcilable differences and we simply need to part company. I deserve better, my daughter deserves better and I promise you, we will find it elsewhere. I suspect that you will be happier without me anyway. We have stayed together out of habit and it is time to make some changes.

Lest you think I do not see my own part in this, let me be clear-  I know I have some issues that I have developed while we have been in this relationship: I truly am not the same woman I was when we first met. I have developed some major trust issues and I have been reluctant to ask you for help at times. I sometimes do not communicate well enough with you. I tend to give up when you are being difficult, rather than hanging in there to fight for us. But, now I realize that is because I just don’t trust you to listen or to know enough to help us.  And I also know that you are to blame for most of the baggage I am lugging around right now. I have enough to juggle in my life and I cannot carry anymore. So, I am going to find a doctor who will help me carry the load, instead of adding to it.

Please do better with the next EDS kid who walks through your door. You could have learned so much from Em and could have become a better doctor. This is your loss, you know, not mine.

Sadly and very sincerely,

Em’s Mom

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