Friday, September 18, 2015

A New Diagnosis

On Monday, I awoke,took my child to the baby sitter(as schools were closed for the Jewish New Year) and came back to a voicemail on my phone.

"call us immeadietly." (Signed, Genetics Dept.of University)

I called. I knew in my gut they were going to tell ME I was the reason for my child's genetic condition because that is how it is,my husband is the largely healthy one.

"we got the results back...


And you also have the 17Q12 deletion."

Well, joy. And does this mean I have MODY as well?"

"yes,but we need to communicate with 
Dr.S (adult geneticist-it was J's genetic counselor who called me) to formulate a plan of action that will also involve your endocrinologist."

I didn't cry this time,because frankly it makes perfect sense that the weird health stuff that has happened all my life beginning at babyhood when no one could figure out why my head was so large and I only wanted to sleep,not eat.(many tests later) was in fact related to a genetic condition. Or why my spine is not straight,or the tinnitus that began when I was 12 years old. Or why I've gotten chicken pox, Shingles,and Lyme disease in my first 20 years of life. Or why the diabetes came on over 6 months and the magnesium issues as well.

New Diagnosis: 17q12 micro deletion. Magnesium issues from that. Not Bartters Syndrome. Probably not type 1, because it specifically encodes for MODY 
5 diabetes. Like,basically impossible to have type 1.

Basically the news feels like I'm a freak of nature,because this happens at the very basest of levels. I don't know if this effects lifespan (I'd like to think it doesn't but who knows) and the MODY 5 puts at risk for liver and kidney dysfunction. I guess the good news is that I have above average IQ, it hasn't effected that but can it? Also the chances of passing it on to offspring are 50/50.(hence the reason J has it,& it affects people different ways so that some people cannot live independently.) I'm already being monitored by a kidney doc,but there will be a whole new care plan with aspects of what I might be likely to get.(Different from J's plan,as they don't know what his level of functioning will be as for now he has none of the physical problems.) My Endo will also collaborate with the geneticist as it may be possible for me to take some oral medication with insulin,to lower the amount of insulin I take.

And that's where that's at. I'm still kind of stuck in the disbelief stage. (With all of this) And dealing with the knowledge that this was no random error that caused me to give it to my son.
Diabetes still sucks & these waters are uncharted.(read: mini identity crises if I no longer fit in the type 1 world)

Sunday, August 16, 2015

Wondering "if"

 My head knows it's impossible..but on days like today and yesterday,my heart whispers "what if? What if you weren't type 1? What if pills were a possibility? What if everything you ever thought you knew about diabetes control is just another option?"

I ate 200 carbs yesterday. 150 today. My sensitivity is through the roof.(Mostly that is because I was doing a grueling flea market prep,actual 7 hrs at flea market,& then carting the remainder home.) Hot weather,& exercise have serous effects on my bg. 14 units as a TDD is hardly a cure,but it is 10 fewer units then I'd normally need for such a day. It's not the first time I've needed much less insulin,I have these times when it's actually under 10 units. I think that if I tried something like Invokana,I'd be even more sensitive to insulin.(I'd consider that as a good thing..the more sensitive you are,the less you need,& the less you have to worry about extreme hypoglycemia.) As someone who had one such unpleasant event last month,and who barely avoided the ER I am a fan of the less IOB,the better. 6 units on board when you are as sensitive as I am is not a good scenario.(Never "double correct" for a 340. It was scary,as I couldn't eat enough to stop the drop.) I really want to discuss starting Invokana with my Endo.(Along with glucagon scenario plans. Mini Dosing in adults doesn't do enough. )

Bottom line is,I want my D to become more easily's not that I consider insulin to be evil. It isn't.(you need what you need) Low carb does that but I love my carbs,and would have no energy on such a diet. Yeah,I do eat low carb some meals but I balance it out with the others.
Bottom line is..your diabetes may vary. And you need to find the best option for you.

Wednesday, August 05, 2015

One Thousand Tomorrows

I use to think
That 1,000 tomorrows would make up
For 52 bad yesterday's.

Ah,hope springs young,& eternal
Years pass
A thousand tomorrows will soon be today
And turn into yesterdays.

Normal numbers don't save me
From the darkness of the place I'm in.
I don't see the light.
I don't see the hope.
I don't see the promise of tomorrow.
There is only today,& living the pain.
(And the further spiral of the numbers.)
Yesterday probably even wasn't that bad,because yesterday I was at least breathing.
And my yesterdays with diabetes now match those without.(16.5 + 16.5)

This also I know
That a bad today
Keeps you from feeling the promise of tomorrow
And that it doesn't have to be permanent thing.

(But like diabetes,depression just kind of sneaks up on you,smacks you on the head,and delivers a boatload of other difficulties to keep you in that place. And I'm tired,& probably my thyroid levels are completely whacko and I'm fully aware I need to go to my pcp and get back on something. I know. I'll get sorted out.)

One step at a time.
One today at a time.
Turning into tomorrows.

Thursday, July 16, 2015

FFL: Complicated

Ten years ago, I got on a plane and went to Florida to hang out with a bunch of diabetes people. I was getting to know (IRL) the people that had previously lived 
only in my computer.(aka the Children With Diabetes Chatrooms) There was no Adults With Diabetes support. I volunteered to be a chaperone at the Teen Dance,which amounted to me standing outside the door and making sure no parents snuck in.(That was how I met Joe S.)

2015. My ninth FFL. I am kind like the shy little sister that hangs around and that everyone kinda knows of,but not really knows,because I am a shy introvert and public speaking doesn't happen much. The thing about introverts,they have just as much insight into things as the extroverts but nobody gets to hear it much. I will say that I have become more outgoing but still most people don't remember that they "met me" the year before. (I also must be a sucky conversationalist.) The regional (2004)CWD conference in DC,the very first one I went to, I didn't say a word I was so shy.(I think I have improved from that.) 

2.5 weeks ago I had a laparoscopy,& spent 8 days recovering from that. On Tuesday,(the 7th) the hubby kid and I flew down to Florida, getting to the hotel about 2 pm. Spent some time at Hollywood Studios but by 8:30 pm we were all pretty tired & went back to the hotel to crash.

Wednesday was amazing..the one Masterlab session that I went to was like a "play" of diabetes,emotions,and how it related to our lives. And we read out loud what we had written. It was incredible and there wasn't a dry eye in the room. After that I had to go to a Focus Group with my friend(for Omnipod) which was a chance to tell them what they needed to incorporate,AND pick up some Disney Dollars for participation. The afternoon was spent crashing(nap.) And at 6 pm,the exhibit hall opened and a buffet was served. It's always mass pandemonium in the exhibit hall,but still fun.

On Thursday, after dropping J at childcare my friend and I did the Celiac screening,& then went to the retinal screenings. They had a lot of trouble with their equipment on me,& had to do everything about 20 times.(because of my fake lenses) And someone before us was receiving some very bad news so Dr. Ben had a lot to handle with that family(& making arrangements for treatment). It was a couple hours later,& we had moved into the last "consultation room," and the medical student was telling me she wanted Dr Ben to take a look at a couple of things and my brain was going straight to "I'm screwed" while trying not to have a panic attack waiting for Dr Ben. Dr Ben came over to the computer,went through the tests,& said he had to run one more something looked swollen.(come back in 20 minutes) I went and gulped down some lunch from the buffet and was back in 20 minutes.(hubby had picked up J,eaten lunch,& gone back to the room) Dr Ben took me back to the primary testing room,took several more photos,& then showed me the photograph of my left eye. Said photograph looked like an aerial photo of Mars..with one large black,crater looking area.

"You've had a bleed. Here is your macula,if the bleed is in your macula it can permantly affect your vision. It's not in your macula,comparatively speaking the bleed and the macula is like the distance from New York to Chicago. It's not an active bleed-you see the little yellow things around it? Those are exudates and it means that the body is trying to heal itself. It can heal itself in a few months. Better control will help."

"Is it purely diabetes related?"

"Yes,500's did this. 300's do not."

One 500 can do this..

(& I'm not perfect. I've had a few 500's in the past few months. But I've lowered my a1c by 0.8 in the past 1.5 months. I am getting where I want it to be.)

I don't believe what I am seeing,yet the evidence is there. I've had no eye issues,no hint of a problem between last years exam with my opthamogist and today.

"I didn't know it could happen that fast."

"Yes it does."

Tears take over at that point,and I ask for a hug before stumbling out the door to seek a bathroom to unload my grief in private. My first real complication,here to stay. I don't feel like doing much of anything that day,like the black crater on my eyeball just took over my heart as well. Things go on though.(with a banquet that night)

The next day,there's a session on complications that my friend literally drags me to,upon threat of everyone coming to the hotel room to bring the session to ME. That was what I needed to hear though. So many brave stories were shared,and though I'm not sure I really know how to convince myself it's not my fault it helped to hear that no matter how many complications we may get,it doesn't mean our lives were without purpose.(plus,we are managing an unrelentless disease 24/7/365) Remainder of the conference, I cried on a few more shoulders and had a few more heart to heart conversations and spent two days doing theme parks full throttle before going back on Monday.

Tuesday: surgery stitches out.

And Wednesday came. I was there,bright and early for my opthamologist appt. They moved pretty quickly,with the standard medical questionnaire, eye pressures, charts and drops and about ten minutes later getting to see the doc.(I had J with me as the babysitter is on vacation this week) My Optho took his standard 15 seconds per eye,everything is fine see you next year..

Wait a second. Stop everything.

"Are you sure? Because I had a screening at a diabetes conference,& they said there's a spot of something in my left eye."

"I don't see anything. Who did this "screening", anyway?" (The condescension in his voice was oozing from every pore.)

"Children with Diabetes conference and I think it was a NJ school of medicine with the eye screens?"

"What did they tell you?What kind of screening was it?"

"That its a bleed and it needs to be monitored and it should go away. And I should see my opthamologist for it."

He takes another look then,with mirrors and bright lights and look up/down/sideways. 

"Your retina looks fine. I am seeing a small bit of blood,a speck really. I think it is neovascularization. I think a retina specialist should take a look at it though."

"Is that NPDR?"

"Yes. Normal,really, for those who have diabetes. I don't know if this is diabetes because it looks very stable and usually it is in more then one area so I want them to take a look at it."

Impression: Oh great,it could be years old and you are just now catching it. Incompetant much?

"This "diabetes conference"...have you gone several years?"

"Yes." (I can see where this is going,he's now feeling insecure about missing this and is trying to figure out if I am second guessing his skills.)

"Well,we will see you next year. And by the way..tell me next time someone sees something in your eyes,hmmmm?" Side friendly pat on the shoulder.


Yep, I'm done with this guy. Arrogant condescending incompetent charmer. I may just see what retina guy has to say and either just go to him,or find a new Optho.

It's been an exhausting few weeks. I now have a whole lot of respect for Dr Ben and zero for my ex-opthamologist,I feel belittled,confused,and more then a little T-d off at what my Optho had to say. No respect for anyone else(who hello,caught your mistake you idiot) and no respect for the dr-patient relationship. He did manage to completely erase any residual "should I switch" doubts. I'm still processing the sadness from this diagnosis but it helps to have heard that NPDR is not a "done deal" toward blindness,the majority of T1's do get this.

Sunday, June 21, 2015

Surfing the Sugah Wave

The best part of Endo appointments is after they are over..and the next three weeks are squeaky clean,filled with promise and hope and resolve..a diabetes clean slate.

That day has come and gone for me.(almost a month into my current "journey.") In the meanwhile,all the promises I made (email CDE! Prebolus! Eat more green things! Do not stuff Twinkies into mouth at midnight and "forget" to bolus!) are a distant memory, I really suck at diabetes improv projects. But then I dropped a pump,& another threw 5 consecutive cartridge error alarms and had to be replaced and my blood sugars were a grand and unmitigated disaster and I needed a breath of fresh air so I dug out my Omnipod pdm,traded supplies for some pods,and gave it another go.

And these have largely been my blood sugars ever since. That's 24 hours where I might briefly go above the high line,versus a daily journey of 100-360 blood sugars. For the most part prebolusing isn't even necessary.(except breakfast) Every thing I do works. (Which is super weird) I think some of it might be 
from pod placement..using my arms because the other places have scar tissue from so much use and it's been good to have that fresh territory.

In the meantime,I had a repeat a1c done this week(diff doctor) and my a1c has dropped (!)0.6 points so it looks like it might be possible to make significant changes by next appointment.(in August)
I have enough pods to ride this wave to summers end and if I break the 7.0 barrier, I am going to talk to my Endo about another RX. I never thought I'd be doing this but right now,this is exactly what my body needs..a break from the rollar coaster. It's also helped immensely that I got the "Sugar Surfing"book and have tried to implement some of those suggestions.

I'm lovin' it. (Well,as much as that's possible.)

Friday, June 05, 2015

Project: Genetics

I've come to the conclusion that I have "Left-side-of-the-body-itis",having had to have had 2 cataract surgeries,1 L.arm ulnar nerve surgery,1 tonsillectomy, 1 C-section, 1 L.eye muscle surgery for double vision,& I'm not entirely sure where the pancreas really is in me but I'm guessing it's toward the left. Also 1 messed up Lumbar Disk affecting strength and motility on the Left Leg although that has much improved,& I'm now in matenence phase (chiropractic) for that. However,I now have a messed up ligament in my left shoulder and it hurts to do anything with it. I told my chiropractor today that I wanted to get it evaluated and what followed was an exam,an adjustment,& a torture device known as traction.(basically a head vice) I was supposed to stay in it for ten minutes(at 10 pressure) but after five I started dry heaving,getting dizzy,and having a pounding headache and no more of that could I stand. He asked me to do three sets of things to make sure I wasn't stroking out(it can happen when you are manipulating the carotid artery),which I wasn't,but it took about ten minutes to recover enough to go home. I then had a headache from heck for the next two hours and horrid nausea. And it didn't help my shoulder pain either. I think this is going to be a slow process,& a headachy/nausea/dizzy one at that as we try to get a pressure I can stand. He told me to roll up a towel to put under my head to help release the pressure,& a specific lifting technique to use. I might have a pinched neck disc as well,if things don't improve we will get an x-Ray. And bonus props for calling me later to make sure I was still alive. I like my chiropractor,the techniques really do help & he knows what he's doing. Would far rather go through this then spine surgery. I'm just wondering how many other left sided things can fail though.

In other news,my Endo does think I have MODY 5 but it will be awhile before I can get specifically tested for it...I am negative for 17Q12 chromosome haplotype deletion but that doesn't completely rule it out,& it's much more expensive and has to be tested through a genetics division.(next appt.: August 28) It is what it is,no rush.

Sunday, May 17, 2015

Day 6: My Favorite Blog Post

If you have been blogging for a while, what is your favorite sentence or blogpost that you have ever written? Is it diabetes related or just life related? If you are a new blogger and don't have a favorite yet, tell us what motivated you to start sharing your story by writing a blog? (Thank you Laddie of Test Guess and Go for suggesting this topic.)

Dear Beanie Baby would be my very favorite blog post of all time.

Because in the beginning, it was this.

Followed by this..

And by ten weeks, it was apparent that this was a human being. (favoritist photo of all time, as it looks like he was smiling and waving at me. TEN WEEKS,and it got much more real.)

Grow..(and blow bubbles)


Almost ready...

And baby!

It was an amazing process,and despite my inability to make perfect the glucose levels in my blood at all times..babies are scrappy little things and most will get through it just fine. (Although going through for an entire 10 months with not one number in the 400-500's was a pretty miraculous thing too.) One of the perks of having diabetes during pregnancy,they did ultrasounds really frequently.

(and my computer is doing wonky things this morning, so please disregard the weird links that lead to pictures. Only link should lead to my original blog post)