Picked up my labs today. Based on "normal levels," everything except my RBC looked fine. My calcium was at the lower end of "normal," so I posted on a group I'm involved with and got more info than I know what to do with.
Here's the thing:
My doctor tells me one thing;
My surgeon tells me the other;
My DS group tells me multiple different things;
All three tell me the other two are full of shit and don't know what they're talking about.
How's a gal supposed to know WTF is the right thing?
I followed my surgeon's notebook to the letter, and now I'm being told different things by people who are not MDs.
I'm going to scan in my labs and send them over to my surgeon tomorrow--as I did for my last set of labs, which he said looked great except my B6 and B12, which were too high, have come down quite a bit: B6 is normal, and B12 is very close to normal albeit still high, but nowhere near where it was in November. I changed my multi to something with a lower B6 and B12 concentration. I'm interested to hear what he has to say about these new numbers.
So who do I trust?
As I told someone in a PM in the group, "My vision is pretty lousy--I can't read anything small; I have some short-term memory loss/damage; I have ADD (Look! A chicken! Shiny!), and some other information processing disorders with long names I'd have to look up but I'm too tired and sick from eating crap after the SHIT day I had today, and I am easily overwhelmed. Plus anxiety. And depression. Yeah, sucks to be me.
You know how I learn? I have someone hold my hand and then I try it myself, have the "expert" look at it, then I go solo. That's how I learn. I've tried to teach myself Photoshop and InDesign for years--can't do it. I don't learn
that way.
So to say that I'M OVERWHELMED would be an understatement.
I could really use a drink, jeesuz.
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March 10, 2015 1:20pm
The shitting, gas, and crying continues unabated. On the bright side, I've lost 2 pounds just in shit-weight alone. On the negative, I woke up my (light-sleeper) husband last night with a loud fart, and shit myself twice. Good times.
Cookies 1 - Jules 0
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(3/10/15, 1:45pm: So I found this: Visual and auditory processing disorders
(this is me. People think because I'm smart I don't have any problems.
Not true. I think the smart part only helps me to deal with these things
a little better than someone who is less smart. But it is a struggle.
Constantly. Things disappear and reappear--in my mind--all the time
because my brain can't process what it's looking at if there is too much
information. Add in ADD and now semi-blindness? And I really feel at a
disadvantage.)
Don't sell yourself short. All manner of folks have different challenges. You'll figure this stuff out as you go along. No one said you have to absorb years of information in one fell swoop.
ReplyDeleteThanks. There's no way I could. :-)
ReplyDeleteDoctor youknowho wrote me back and said my labs look "Great," and I listed my regimen of vitamins to him and he said to keep doing what I'm doing. I see him in May, and may have labs done again at that time.
My PCP doesn't know a damn thing about the DS--she's only familiar with the RnY. She freaked out when I gave her the list of labs the first time, but I was insistent. I asked her to redo the exact same labs, and a couple of things didn't get done. I don't think it's life-threatening, but I need to have a checklist when I go back again in May.
I know this feeling so well and it is terribly frustrating and confusing. Unfortunately, the answer is "all and none". Out of the three, I would say that your PCP likely will be the most dangerous unless she is dedicated enough to you to learn and consult. My PCP knew nothing about DS and a lot about RNY. Bless his heart, he educated himself specifically for me. He spent hours on the phone with my surgeon's office and other DS surgeons understanding and learning.
ReplyDeleteI would highly advise not getting your medical advice from a large DS group. Not because they don't know but because it's too large a sampling. You would be MUCH better off if there is a DS support group specifically through your surgeon and I will tell you why:
You know I am a longtime post op and you know I am very observant. You also know I have had just about every odd complication and side effect imaginable. I know what I am saying here.
It is my experience and observation that every surgeon does the DS with a customized approach. Because of this, each surgeon's group of patients tend to have the same levels of success/failure and problems/side effects. If you rely on the experiences of too large a group of post ops, you won't ever find concurrence. However, if you rely on the experiences of a group that all went to the same surgeon or team, then you have a definitive and visible pattern upon which you can rely.
I remain in close contact with 3 of my surgeon's longtime post ops. Almost without exception, our labs, side effects, weight loss, and "oddball" problems are identical to each other's...but to few others.
Hi, yes, you have been through the fire, to say the least.
DeleteI belong to a number of different groups, including one my surgeon runs.
Here's the thing: There is nothing significantly wrong with me. My labs are fine. It felt like a lot of "fire!" when there wasn't even a campfire, knowhatImean?
My calcium is low normal, I looked at the bottle, and I've been taking it wrong (part of my visual/learning/processing issues--a trifecta so to speak), and instead of 3,000K of calcium citrate (with mag and boron), I was only taking 500 mg. For the last four months. So I did blow it. I would have to take eight a day to get 3K mgs of calcium. So I'm changing back to calcium tablets, with a separate magnesium tablet. I stopped because they are HUGE and since surgery, it's harder for me to take pills. I'm going to cut them in half.
With all the other shit going on in my life, it did panic me a bit and my anxiety went through the roof. I'm an easy frazzle and I know it. Knowing it doesn't help. I can maintain a public facade for so long, then it breaks down. By the end of Monday, finally at home, I had a full meltdown.
Now that I'm thinking clearly, I'm just going to follow my surgeon's advice, for now.
Thanks for chiming in.
SJ
It's not just a learning process, it's an absorption process if you will pardon the deliberate pun. That was the topic of at least half my writings for the first couple of years, the frustrations and indeed the panics. And I get a lot of negative comments every time I say something like this but it doesn't make the words any less true - WLS post-ops are drama addicts. If I were considering DS and went into a post op forum, I would consider sawing off my own stomach as a safer alternative based on the posts and responses in one of those forums. Some are worse than others of course.
ReplyDeleteTo make it worse, the forums are an addictive source of immense comfort because you *need* to know that you're not the only one with whatever odd ailment du jour you may have, You *need* to not be alone. And yet at the same time, more than half of what you read makes you want to stick your head in a microwave.
It's a marathon, not a sprint. If your calcium is low, then work on it but don't think you're going to crumble into a pouf of dust tomorrow. I assure you that you've been getting more than 500 mg calcium daily. There is plenty of calcium in the foods you eat and continue to make educated choices - reliance on pills for vitamins will get you into trouble down the line. There will always ALWAYS be scientific/medical questions about the absorption rates of vitamins by humans and the quality of those vitamins. Look at http://greatist.com/health/18-surprising-dairy-free-sources-calcium for an interesting list.
I think that 3k calcium is too much, but I'm stopping there on commentary about what you eat because you've made it clear you don't want to hear it. I will tell you that most doctors agree that a healthy body can only absorb 500 mg of calcium tablet form at a time and "at a time" is usually 4 hour increments.
Listen to your surgeon and listen to your surgeon's patients. You might even want to ask a post op of your surgeon that you like/respect who they go to for PCP and even therapist and consider going because the more DS patients a doctor has, the faster they learn and easier it is to spot trends.
I am a big believer in watching patterns. In myself and in others. Thats why I like smaller groups - it's easier to see trends and the trends are where the facts really are. Just remember that your facts (what is successful for you) may differ from someone else's facts.