Friday, July 25, 2014

A Matter of Spine

Last week, I went to the chiropractor..despite my feelings that they are kind of snake oil medicine people.(one would think that they'd be learning something during those 4 years...they are "doctor" after all) But anyhoo, I went, because I have been ignoring my back for hopes that it would just eventually magically get back in shape.(This is really NOT a good idea, much like ignoring your teeth and never getting to a dentist is..problems just cascade from there.) But I finally decided that if there were a chance NOT to have to live the remainder of my days with shooting,burning pain..well,it was worth a shot. Years ago, I had X-rays taken that showed a lovely little bone spur on L1-L2..and at one point, I tried a cortisone injection to help.( I had a job where I carried heavy stuff around all day in a warehouse. I had this job for 7 years. You can bet I'm kind of messed up from it.) That injection helped, but the pain came back. In (later)pregnancy, I'd wake up every 2 hours (during the night)to readjust/get some feeling in my numb legs,pee,and check my blood sugars. Now, I'm at the point where I'd really like to improve the situation before it gets worse,so off I trotted to the chiropractic office. I watched a bunch of boring stuff/read some boring flyers with such grandiose statements as "restoring the peace and harmony of your body" and the chiropractor have me a physical exam/did an X-ray. On the next visit, he plopped my X-rays up and gave me an X-ray 101 lesson and had me tell him what was going on.
Which was:
-L1-L2,still messed up. But it isn't fused,and there's still some real,possible hope that chiropractic therapy will work.(it's a sort of a level 2 out of 3 scenario) If it's fused,nothing but surgery will help.
- I have a genetic condition called Facet Tropism Syndrome. (Genetic..I got it from my dad.)It's when your lumbar disc decides to develop like a thoracic disc. As you can imagine, it's not good..and can put you at risk of a herniated disc.L5 is the tropcated disc. Because of this, I naturally lean towards one side..towards the other is difficult. And it looks like I've been through "trauma" in some point during my life.(my hip is out of alignment) (Who hasn't been though trauma..but I digress) That required TWO signed forms absolving him of any fault should my disc herniate during treatment. All of which is hard to hear because I don't know how much I can expect to get better, and whether something will rupture but I know I have to do this now, for me, whatever the risks. I don't want to be living in a wheelchair in 10 years. I want to be as healthy as I can. So I will be going in 3x a week,staring next week. I hope it helps the pain and the numbness.(my left leg has noticeable strength deficiencies compared to my right.)

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Tuesday, July 22, 2014

Summer Dayz

Still here, still kickin.' Summer is flying by..and we still haven't made it to a beach. We have made the annual "Trip to the Zoo" and the "Trip to the National Aquarium" though. (During the three weeks that my MIL came to visit.) Whereas last year young J wouldn't even look at an animal, this year he got more into things...petting the goats at the petting zoo, pointing to the birds, and baaaaing at the goats. He is still a toddler,and would far rather run around (sans protective hat) screaming "Runnnnnn" at the top of his lungs but it's nice that he's actually interacting more now.

I finished up a summer course to requalify for the nursing program,& I'm #125 wait listed for the fall.(aka don't count on it) Its ok though,because I actually am enjoying not having to get up insanely early & spend all day on the road before crashing into bed. I will get into the program in either the spring or this fall.
How's it going with you?

Wednesday, July 09, 2014

FFL: Touching the Elephant

There's this common misperception that CWD friends for life is just for kids with diabetes,and their families.

But it's so much more complex then that. FFL is many things to many people,depending on your social 'sphere.

If you grew up with it,you are pressed into service for free labor.(as a young adult)

If you are a sponsor,it's an excuse to go out with your buddies at the end of the day & unwind at the hotel bar.

If you are in the DOC (blogger,etc.) it's a place of great support & one of the few places where everyone else is just like you.

If you are a parent, it's where you find support,and knowledge,to help you in your fight against this disease among 1,236 other parents who really GET IT.

If you are a kid with D,it may be the place where you find your first friend with diabetes.(& if you are a sibling,you can sound off about the stress of the family dynamics)

If you have celiac,it's one of the few places that you can eat from the buffet and not have to worry about gluten contamination.

If you are a presenter,without diabetes are probably laboring under the assumption that it is for kids with D. Well,it is,but it's more then that. It's a place where the famous and the non-famous rub shoulders,where doctors and grocery store cashiers eat the same special buffet rubbury eggs, where it doesn't matter who you are or how much money you make..the power of the green wristband unites us all. It's a place where you
can laugh hysterically over a 306 mg/dl,where you can count on someone always having a needed diabetes supply,where you can drink diet coke with wild abandon at midnight and compare Dexcom graphs with friends.

I didn't go to FFL this year,for the first time since 2006. In 2005, when I went for the first time, finding that niche to fit into was a challenge. (The experience can be a little lonely without friends to hang out with. And yes,you are surrounded by 4,500 people who "get it"who still would rather do their own thing.) In 9 years I've felt like I've seen so many of the sides of FFL..I have volunteered with the teens,babysat 4 year olds, been with the bloggers, gotten to know many of the moms of CWD,seen the same sponsors year after year. I guess the point is,FFL is so much better with a friend/s.(And people who leave you crying at the gate of Disney to get back to the hotel on your own are probably not your friends.Know who your real friends are.) All of which has been an incredibly rich experience,& mostly good. (But I think every lonely soul who ventures to FFL on their own needs an Dbuddy or something so they don't have to feel alone.) I think a lot of people don't come to FFL because they don't know anybody there.

I don't think I'll ever understand all that FFL is,just like the blind men couldn't grasp the whole of the elephant..this green,orange,and yellow arm banded elephant. I see life through the view of an adult T1,blogger,married,with 1 child and a lover of Disney (& any excuse to go there that I can.) There are so many perspectives at FFL and that is the beauty of it.(it's just sad that more people never move beyond their own.)

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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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Wednesday, May 21, 2014

The Magnesium Wars

When you get dxd with diabetes,food goes from being food to being a collection of carbohydrates,proteins,and fats.(the same, I imagine,with any GI related illness) When you have problems with maintaining electrolytes food turns into a collection of potassium,magnesium,etc.

The above photo shows four types of magnesium with insulins,not all supplements are created equal. Magonate is the rapid-acting,chug it down and in 2-3 hours your acute symptoms with subside,stuff. Slow Mag is the gentler on the stomach stuff(kind of like UltraLente-longgggg curve of action) and Milk of Magnesia is just there to get things kick started in a gentle way. Mag Oxide can be helpful(it's sort of like Lantus..over the course of a day) but when it decides to ravage your gut,you'd better be near a restroom.(It's the most brutal) And,there's Mag Sulfate which is given IV over a few hours.

On Monday I had my colonoscopy..and in preparation, I went on a clear liquid diet (Sunday)and drank a bowel prep (Prepokick,which had a ton of magnesium in it). It all decided to kick in at 1-9 am,suffice to say I didn't get adequate sleep. Took J to the babysitter and hubby drove me to the hospital. Prep took about 1.5 hours,and then the endoscopy nurse wheeled me to the OR. My bg was 196.(the tech didn't bothered to check this,but I let the nurse know regardless) There was a brief "do you have anything to declare" by the anesthesiologist, and some "you'll do will be a lovely little nap" by the nurse and I was out like a light.(following administration of propanalol) It took about 30 minutes. Woke up and they said my bg was 156. The gastro came in and said everything looked good initially,took some biopsies and step up the game on the gut motility administration.(milk of mag) He didn't think it was absorption issues,because everything looked pretty normal in there follow up with him and my nephrologist. So,the stool test(for pancreas insufficiency) is unnecessary. If my gut isn't absorbing a nutrient,it's possibly because it gets overwhelmed by it(one has to work up to the dose, I guess). In the meantime..back to the magnesium wars. I get levels done weekly,and an infusion every week. Unfortuently, even with stuffing all this mag in my body I am still getting numbness,tingling,muscle cramps. (And lab values to match) I am thinking I may have to go to U of MD(or somewhere) to get another perspective outside of the problem because my neph admits that he's stumped. It's just not looking good at all.

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