Saturday, June 21, 2014

Gone with a G

"It's not about me."

Except it was,darn it. My nephrologist had announced his retiring intentions via mail,and there was no going back..only forward.

"I want to find someone who is good for you,& your set of rather unique issues."

And so,we talked. (At my last appt.)We talked about my magnesium issue,the diabetes,the Vit. D (where he dropped a rather potent analogy comparing my taking a few Vit. D pills to sipping a drop of water for dehydration),the upcoming gastro appt,the possibility of Celiac(doubts it),this,that,the other. He is leaving the practice to take care of personal issues and won't be back (he's also getting older.) And we talked about a replacement doc(I could stay with the practice..the other neph will see me,or can wait till the practice hires several other docs.) I think Ill do that,not that there's much choice, but he encouraged me to keep on this path till I got answers.
I'm really sad about his leaving,and I feel like he was sad too but you can't help some things.(at the end of the appt,we hugged,and that was the end of it. I don't have answers but he still tried to put me on a path toward some and I'll always remember him.)

In other news, I won't be going to FFL this year. That's another extremely painful happening but thanks to my summer course and lack of funds from unexpected bills we can't afford it this year. Hopefully next year.

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Tuesday, June 10, 2014

The Celiac Connection

Last Saturday, a T1 friend and I drove to TCOYD in DC.

I've been under the impression that one either had celiac(or not) for quite some time now. Since I've tested negative several times for antibodies, I've assumed I don't have any problems. But at Friends For Life last year, they were doing HLA genotyping(along with antibody testing) which I participated in. Last month, that test came back positive which means I have the genetic susceptibility for the disease.(as does my offspring) I had J tested(amid the eye rolling of the pediatrician),and he is currently antibody negative.(to get the genetic test done I'm pretty sure you have to go to FFL because insurance wouldn't cover it) I really wish I knew if he were HLA positive because if you aren't,you cannot get celiac and if you are,well you can be on the alert for signs and symptoms of the disease. Celiac,as you know,sometimes has zero symptoms(indeed,I've never had issues with gluten). In the midst of my current issues with magnesium absorption, I've also had issues with low vitamin D..and as always,I have autoimmune Hashimoto's. Anyway,at a session on autoimmune diseases, the doc was mentioning the very strong thyroid/T1/low Vit.D/celiac connection and suddenly the light just kicked on...nay,it flooded over me in its clarity. (There have been papers written on how people with hypothyroidism should avoid a gluten diet to avoid the onslaught of that disease) That was me she was talking about. I don't have results yet from the colonoscopy biopsy,I go back to the GI in a couple of weeks. In her opinion,people with that positive genotype should probably have antibody testing every few years to make sure they detect the disease.
They can also do a test to determine gluten insensitivity.(different from full blown celiac) It's left me very confused(which comes first,the chicken or the egg?)as to what precisely could be going on. Would going on a gf diet possibly improve mag absorption and stave off celiac,or what?(I'm sure as heck not going on one without a very good reason) A lot of people think they don't need to worry about celiac at all..that's just not true. Like type 1,it can happen at any age and with few or no symptoms.
On the magnesium front, my levels have improved but seem to have hit a plateau and aren't continuing to go up. I will be trying to gradually decrease the amount of time in between IV's,and supplementing with oral mag. It's going better at least.
(And on a side note..TCOYD was awesome.They had a T1 track and a T2 track/exhibit hall and it was like a mini FFL conference!)

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Sunday, June 01, 2014

The YoYo Effect

Up. Down. Up. Down.

Such is the flow of life with type 1 diabetes,and it can be wearing at times. Especially as the days turn to months,the months turn to seasons,the seasons turn to years,the years turn to decades.

"Are we there yet?"

We are a long way from being "there", a long way from anything resembling a cure. Slamming the door on hope is a hard thing to do,but I think we can at least hope that things will get better in our lifetimes.(in terms of diabetes treatments) And maybe,a cure. But having another condition for which most of the world has never heard about let alone have any interest in,the concept of having that ever cured is very much the hopeless one.(I'd far rather have the 'betes cured anyway,but still,the research is driven by the masses who have it.)

There are times,like three nights ago,where I get tired of it.All of it. Site changes/pump change outs get pushed back/undone,and I just go to bed..not caring if I wake up 300+ at 2 am.(and I do) There is always something to be done with diabetes,always some device to charge(pump,meter,Dexcom,phone),always some blood sugar to check/correct,always some carbohydrate to be consumed at all hours of the day and night,always some phone call to make regarding the meds/supplies that keep me alive. It's all diabetes,all the time.

"Do not go quietly into that good night
Rage,rage,against the dying of the light."

-Dylan Thomas

It gets very wearing sometimes,but neither magnesium deficiency or diabetes is going to stop me from at least trying to stay strong,even though I suspect the only strong part of me may be my stubbornness. I don't feel strong,I feel tired all the time and mentally "ok" until it all just piles up and I just completely crash.
I don't want it to win,at least not for the next 40 years or so. I'm not the only person fighting daily battles against diabetes(and all those other annoying diseases)..and I realize how many others have died,so prematurely, from this disease. (We all seem to have this notion that "control"= no bad things will happen. Not true.) Ultimately, it boils down to genetics/lifestyle/and not getting hit by any one of the millions of idiotic drivers as to how long you can live with this disease.
(Sorry, my car got smashed up in the parking lot the other day..and I am having fun dealing with the police,insurance company,and the car repair shop.)

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