JazzyOne9254
In the Danger Zone!! My Plans...and Wisdom for Newbies and Vets
Jun 22, 2015
Well....
My last labs are sucky in so many areas....AEDK's, B's, Protein...
In a nutshell, I am in the middle of PCM (protein calorie malnutrition), deficiencies in several key areas...just downright bad labs.
I will be going to a local hospital, on order of my PCP (she got the labs back...finally) and having a PICC line placed, and most likely, an infusion nurse will come to my apartment and administer the nutrients I need. My PCP says no port, unless PCM becomes a recurring issue.
These past five years, I have been trying to teach every healthcare professional I come in contact with about the DS in general terms, and about mine in particular. I keep a home file with lab results in it. and I consult with the St. V's (Saint Vincent's-Carmel, IN) dietitians, PA's and surgeons regarding my labs. My lab here has a neat little portal called NoMoreClipboard.com where you can securely view your labs, and often see the results before your doctor does.
Up until now, only a few blips, except I had not been able to keep my calcium levels sufficient to prevent osetopenia, which turned into osteoporosis. I had Reclast infusions this year and back in 2013.
Here's what happened:
I had a very severe emotional blow involving myself and someone I thought I knew, but didn't know at all.
Apparently, I was spotty about taking my vites, and for the past couple of months, was not supplementing my protein.
I now have Protein Calorie Malnutrition, as well as a number of other deficiencies. My eyes are ok..for now. I can still see at night.
All of you know what can and *will* happen if you, as I have said in my responses to others, "get sloppy" with your vites and your nutrition.
That's what's happening to me now.
I have dropped nearly 20 pounds in two weeks, now at 149.8 pounds (just weighed, moments ago), down from my maintenance weight of 165/167.
Great, you say...no, it's not. My PCP's loss limit was 160, no lower, due to some other health issues that I have that are unrelated to the DS, but which the DS helped. I know, it doesn't make sense, but in a nutshell, medicines I needed to control Systemic Lupus Erythematosus flares could not be taken at the dose I needed for my body weight, which had been helped along by prednisone. The solution was to lose the weight, so that I could better control the Lupus. The weight loss worked, I was able to utilize medicines that would not work before, and I had even begun Voc-Rehab to try to get off disability and into a new profession - Registered Dietitian (or Dietician- both spellings are correct), specializing in nutrition for weight loss surgery patients in general, with a special affinity for DSers, since there are seemingly very few dieticians who can wrap their heads around DS nutritional requirements.. I have taken classes toward that end, but I stopped last year to have excess skin removed from my thighs, which was causing abrasions and infections, and negatively impacting my health.
I already have a BA in Telecommunications, and up until 1997, my life's work was radio news - heard but not recognizable on sight, as TV journalists are. Actually, I like it that way, as you can do what you love, and still have a normal life, unless of course you do a lot of public appearances, which I did not.
What I want to do *now* entails getting a BS in Nutrition, doing a nutrition internship, and then extra training in bariatric nutrition. In years, the equivalent of a Doctoral program, if done straight through from undergrad. RN would not give me enough latitude. NP might, but it would be the same thing I'd have to do for the RD, so...you get the picture - six of one, half a dozen of the other, and I would actually be a specialist with the RD limited to bariatric surgery patients, with the latitude of doing general nutrition if I wanted to.
Anyhow...I've got lots of stuff in front of me right now, first and foremost, getting my nutrition back on track.
Now for the wisdom.
Newbies...take your vites. Everyday. Get your protein grams in. Everyday. If you need to supplement with shakes, do it. Develop strategies to deal with major life events without allowing your nutrition to go to Hades in a hand basket like mine has. Even normies have dietary issues when life deals them blows. Emotions impact dietary habits across the board. Lost loves and loved ones, family issues. They can be deadly for both normies and DSers. The difference is it can kill us more quickly, and is an especially ugly way for a DSer to die.
I am determined that the thing that was supposed to give me a better life, which up until now, has, will
*not* be the thing that takes my life away.
All this said...would I have the DS again? In a heartbeat. I knew exactly what I signed up for. I researched, asked questions, and for the last five years, did exactly what I was supposed to nutritionally.
Emotions took over in my situation, and I got sloppy.
Learn from my situation.
And most of all, circle the wagons and lend me your support, as I fight against what has become severe malnutrition.
I have a good PCP and a good hematologist, both have been with me for a long time, and have been absolutely the best to work with for my Lupus and Fibromyalgia. On the plus side, both come
from countries where they have seen and treated malnutrition much worse than what I'm
looking at right now. They are a husband/wife team, in the same office, so if I reach one,
communication with the other is nearly instantaneous.
In that respect, I'm extremely blessed.
I'll keep you posted.
