Real Time News and Running for a Cause

Just when you start thinking perhaps my own life has nothing to do with me, things change! (Life is famous for establishing change as a constant).

My doctor’s office called me yesterday. It seems that BCBS (my insurance company) is now covering CGMS systems for type 1 diabetics that have the diagnosis of hypoglycemic unawareness (ME!). Having just sent in a request for prior-authorizationon Monday for case by case coverage, well, this changes things a bit!

I called MiniMed yesterday, and after managing to secure a supervisor on the phone, this is our plan of action. I will acquire a Minimed 522 pump. The supervisor was kind enough to wave the Pathway fee ($299) so that I need only to send in the $400 deposit which will be returned to me upon receipt of my 515. Once I have received the 522, Minimed folk will submit to my insurance company for coverage of the Real-Time system (the transmitters and sensors). So, I sit unbelieving concerning the rapid change in fate for myself in regards to this CGMS.

Unbelieving.

I can’t wait to run with this sucker on. I mean, once I can run farther than 1-3/4 miles again!

On the running note, I HAVE been running on my treadmill, just not this week. The first two weeks I ran three times a week and walked four times a week. Well this week I haven’t run since Sunday. I have had a ton of appointments and my room has been nice and chilly, prompting me to stay in bed and snuggle rather than jump out to brave the treadmill. Well, I’ll be running tomorrow. My thighs can’t take this madness. In a sense, though, it was good to take the five days off. I’d been having terrible pain in my gluteus which has since taking my break completely receded. So here’s to running pain free now!

I have also picked a run, not a race, to run in on April 28th. I chose to do 10 laps around the track. It is for the ARISE program, which is the program that provides helpers for special needs kids for after-school recreation programs. Sandis has an ARISE helper for gymnastics, swimming, and our early education class on Wednesday nights. ARISE has been a huge part of our lives, and I am eternally grateful to them!

As a side note, I am collecting donations for my little run. I won’t be running fast, and I won’t be running far (My last run was the Heart of the City Half-Marathon last June) but I will be running for a cause that is near and dear to my heart. If you want to help this cause, email me at sarahiamslh@aol.com and we will work something out. If you want to come and root us on, and show support for the AWESOME ARISE program, come on down to the Sartell running track on April 28th at 11am and root the runners/walkers/wheelers on.

Conciliation Conference Recap

I left work at 2pm with fear emanating to my fingertips. A tingling that seems to interrupt normal thinking and rational reactions. Blood sugar? 203….haha, I hadn’t been responding well to corrections all stinkin day. The conciliation conference was scheduled for 2:30pm. My bundle of nerves, the school, all these people, all these important high up in school people…..My son and his future….I felt as though I was walking the plank, ready to jump.

I felt as though I had prepared my entire life for this one meeting. This one meeting, myself up against what feels like the world. What difference can I make? I have spent weeks writing letters (letters upon letters upon letters). When I began writing these letters I posted them on this blog, but it became readily apparent that I was writing too many letters to post them all. I was a letter writing machine. And I had lists. And evaluations covered in highlighter and scribbled notes. And lists. Oh the lists. Sheets of paper folded in half. Lists of needs found within evaluations. Lists of goals, functional needs, lists of what is missing, and the whys…..And then I had notes. Pages upon pages of notes upon notes. Notes of phone conversations with Sandis’s teacher, his case worker, his mental health county social worker, my advocate from PACER. So much paper.

I walked into the room carrying a briefcase that should injure my back temporarily if not permanently. I walked in with a paper trail to convince the masses of the school’s complete disregard of federal law and mandates.

And next to me? Next to me was my PACER advocate. My angel in a business suit. My angel warrior with a smile, but also a bite. An intelligent bite that knows federal law backwards, forwards, dyslexic, and upside down. An intelligent bite that doesn’t care one iota if everyone at that table thinks she is the devil. My warrior angel. My PACER advocate….(My new hero!)

Do you think things went well? The next couple of weeks will truly convey how well this meeting went. I can say this: When my advocate advised me during the meeting (so all could hear) to file a complaint with the state department of education as the school district has violate my son’s personal rights and violated federal law repeatedly without conscience , well……That is the point in a meeting where school staff stops dictating policy and starts asking: “What can we do to make this better?”

What can we do to make this better?

Finally on the right track.

Waiting on the Powers That Be

So I sent it in. Two prescriptions, one letter of intent, several pages of information, and one letter from me. Straight to the medical management area. Seeking a prior authorization for one MiniMed Real-Time System.

Finally.

I feel like it was ages ago that I first blogged my intent to get one of these suckers. When I first blogged that I’d heard through the grapevine that these things are being approved in some instances by insurance. So long ago it feels an eternity. The eternity BEFORE my world was rocked by autism, and then juvenile diabetes AGAIN.

And it seems we have come full circle, in around seven months. Not bad.

Easter is coming up. My life has so often followed the seasons of the church. I can mark the joys and trials of my life with the seasons of the church. It is amazing how every year this holds true. Last year through advent we were struggling with new diabetes and autism diagnoses. This year through lent and soon easter, we embrace so many new blessings. Sandis’s IEP conciliation conference is tomorrow and hopefully much will be resolved. Sandis will move forward in this new year with a special education plan. We plan as a family to a move to a much bigger, nicer place(with a garage and a playground!). Gracie embarks on her own diagnosis journey. Many, many doors were opened with Sandis’s SSI approval. And we are about to celebrate a new easter. A new rising. A life reborn. Our New Year.

Every year we celebrate this and every year I see the parallels between the church seasons and my own life. And there is so much comfort in the rhythmn of my life. And there is joy. And I have so many expectations of more joy to come.

It Has Been A Long Week

Sandis has some evil virus + strep throat from the God's above that has kept me home from work one full day and 2 half days. 103 fever. Lucky boy. He isn't feeling all that hot, obviously, and is fairly mellow, and it is all I can do just to push fluids into him. It is amazing how he does manage to play despite the high fever. I'm considering bringing him back to the doctor if his fever isn't cleared up by tomorrow.

I have learned something useful this week. I have FMLA at work for: my diabetes, Gracie's diabetes, Gracie's neuromuscular condition, and Sandis's autism spectrum disorder. I did NOT know that I could also get FMLA coverage for Sandis's recurrent sore throats and strep throat. It never even occurred to me! So here I am damaging my attendance rate and using up my vacation and non-paid time for a condition I can use FMLA for. Well, that being said, I had the Dr. fill out the forms and we are covered for this week. This eases a lot of burdens for me. So, if you have a child who is recurrently sick with the same thing, look into FMLA. Federal protection baby. And the last thing you need, if you are working, is to lose that job. Not a good thing.

The three bedroom/2 bath apartment I put money down on didn't work out. Chalk it up to the credit hitlers at the management company for the apartments. On the flip side, I found a gread 3 bedroom/1.5 bath TOWNHOME (yes...upstairs AND downstairs) with a front door that opens up to a PLAYGROUND that costs 130 dollars LESS than the apartment. I'm thinking that sometimes God works in the greatest ways. This is also through the Housing Coalition, which is much more flexible in their credit standards than the hitlers that be at the OTHER management company. I'm waiting for the final word on the townhome, but I'm expecting good things from this. Also, did I mention that we would have a GARAGE? Please remember I live in a small, cramped, 2 bedroom apartment in probably the only non-secure building in Saint Cloud. Things like upstairs and downstairs and garages are damn near gold in my opinion. They are also things that have been unobtainable until very recently.

Damn I am blessed!

I got the paperwork to begin the appointment process for the DANA program at the Mayo Clinic for the kids. I also got Gracie's paperwork for the Noran neurological center which Gracie goes to in June. We are moving along. Yes we are. There is a lot to do, but we are busy, and our horizons are opening up!

Gracie Full of Grace

I know I have mentioned Gracie’s TEFRA/4 year/multitudinous concerns appointment that was this morning. I expected to feel great walking from that appointment. I planned to unload all of my concerns. I planned to have all my concerns listed in an easy to understand format. And I did. I expected to feel great as the doctor acknowledges that yes indeed, there are some definite concerns here. Yes indeed. I REALLY wanted to walk away from this doctor’s appointment with a bill of clean health, with a, “Are you crazy? Nothing going on here at all. Enjoy your life in your perfection.” The mind is tricky. I THOUGHT I wanted shared recognition of my concerns, but that isn’t what I wanted at all. I don’t want more referrals. I don’t want diagnoses. I want to play pretend and have my one true peanut be only my perfect peanut forever. Forget the braces, they aren’t for forever (are they?). Forget everything. Forget it all.

Where yesterday my soul touched new heights of joy and confidence in this path we journey, today it is dragging in muck and bitter bitter pain. This is NOT what I wanted. This is NOT what I asked for. For God’s sakes why can’t they just be HEALTHY? NORMAL?

Why me, why them? Why not someone else?

These are not my proudest moments, but to feel the proudest moments I must at some point feel these bitter moments, or I would not recognize the joy in those proud moments for what they truly are. They are respite from daily pain and trials. They are gifts. Gifts. Yes. Gifts.

So what did our beautiful and talented pediatrician recommend? I’m certain you are curious, as was I, although I expected at least one referral. She recommended we continue our physical and occupational therapy. She also gave us a neurological referral (expected) and recommended that Gracie go to the Norian (sp?) clinic in the cities. Also, she recommended a neuropsychological evaluation. She believes we should bring Gracie to the Mayo clinic (along with Sandis for a reevaluation) in Rochester for a 4-day thorough evaluation by developmental pediatricians, neurologists, and clinical psychologists. Four days. She recommended we bring Sandis as well as we will already be there and as it has already been established that he has an autism spectrum disorder. He would only benefit from what was learned there in regards to his strengths and weaknesses.

Neurologist in the cities. Mayo Clinic some 2 hours away for four days. This can’t be real.

I want to sob. Returning to work, dealing with people, acting as though my life doesn’t feel as though it is coming apart at its very hinges. As though my ground does not feel as though it is falling from beneath my feet. As though everything is not how it is. Sometimes I despair that things will ever be different. But I need only read yesterday’s post to know that it won’t always be this way. We are just on a new journey, and this journey is not Sandis’s.

This journey is my peanut’s. My Gracie. Full of Grace.

Coming Together

Five months post autism diagnosis, and things are finally coming together. Forget that it took six years to get that diagnosis. Everything is coming together that will lead my family and my son to success. There are days that I have felt like crying. There are days that I’ve felt that the fax machine is my only friend. There were days where forwarding 8 gazillion documents felt like my one true purpose in life. But those days, I hope, are coming to a close. Our circle of influence is getting smaller, and we are starting to receive what we need.

Wow.

In January, I never would have believed that two short months later we would suddenly have the abundance that we have. Our monthly income has increased to the tune of more than two times what I gave up with the second job. Our medical bills have been, well, in Sandis’s case, ELIMINATED. Doors for help for Sandis have been opened, and will stay open for at least the next seven years. And we are taking steps that I feel like we have spent our entire lives preparing for.

I put money down on a three bedroom/2 bath apartment over the weekend. This was one thing I had decided I would do if Sandis were approved for SSI. The kids are getting older, my boy and my girl, and I’d like for them to learn privacy skills (seriously seriously lacking in my house currently). We are running out of room in our 2 bedroom. Safety is a concern as not only is the building not secure, but our apartments are the cheapest in the area and unfortunately do not attract folk that are in their finest periods of life. It is time to move on up. We have this opportunity, so graciously given to us. It feels like an award.

We have a conciliation conference on March 28th with Sandis’s school, and my PACER advocate. I have isolated the main concerns I have with his IEP, and after extensive conversations with his teacher and my advocate, I have some great ideas for services for Sandis. Of course, my ideas are that only, we will see what services the school and the team see fit to provide, but we are on our way. We are on our way. Ah man. If I could only adequately convey how full my heart is, the heights that my spirit has soared in these past few days.

I visited Sandis’s respite provider on Saturday. Sandis came with and he LOVED it. The house is an older house (quite quite old actually), but it is on a farm, ½ a mile off the beaten track, and just has so much damn stuff for him to do. We are going to give it a try in April one night and see how things pan out for him, and for her. If things go well, then I have two nights a month, for three months, to take advantage of a much needed night off. And Sandis will have a blast. It’s perfect.

I have Gracie’s 4 year old and TEFRA physical tomorrow morning. We’ve blocked off an hour and I’ve composed about three pages worth of concerns and I also have put together information concerning her feeding habits. I feel as though Sandis’s diagnosis and service journey is coming to an end (at least as far as acquisition is concerned), and Gracie’s is just beginning. Gracie had her early childhood evaluation done this past week, and did SWIMMINGLY. I was so impressed with my little peanut. As for me, my primary concerns for Gracie are medical, which for me was a revelation in and of itself. Sometimes I feel as though I have no concept of normal development, as I have never been privy to it! But Sandis and Gracie’s issues are very different, and so I have my own little window of normalcy with each in different ways.

I am expecting Gracie’s doctor’s appointment tomorrow to result in a neurology referral. At least that is what I am hoping for. Keeping records of my concerns over these past few months has helped me to narrow my concerns to distinct issues with Gracie’s muscular strength (actually lack of strength), muscular rigidity (in some areas), and posturing. I am hoping that Gracie’s doctor will have a direction for us to head in. I am hoping that Gracie’s diagnosis journey will begin in a way that will yield positive results in the way of services and isolating specific needs of hers so that we can MEET those needs.

I know there will be days in the future that I don’t feel this damn good. But today, it just doesn’t feel hard. Life doesn’t feel hard. It feels right. It feels blessed. It feels all over so singularly perfect. And that, my friends, is fabulous!

In the Mail

Not long ago I was struggling with the decision to leave my second job. I struggled with the decision as it meant cutting a cold, hard 250 bucks of room out of my budget. 250 bucks I just didn’t have. With that cold, hard fear next to my heart I decided to put in my notice. I did it without knowing where the money was going to come from. I did it with strained hope in God’s power to provide. I set my fear aside so it was not the primary determinant of my decision, and I made a choice I had to make.

Yesterday after therapy, I was so tired. It was family fun night at Sandis’s school but I had to let the kids down because I just couldn’t do it. The exhaustion was heavy on my lids and heavy in my shoes. I couldn’t even make dinner. I took an extra 20 and ordered pizza. I was heavy in heart. Heavy in spirits. Heavy all over.

In my mail came a small envelope from the United States Treasury, located in Kansas City, MO? Whatever. Wherever it is located. I was thinking my taxes were automatically deposited in my savings account. It looked like a check. I thought maybe there was some weird tax refund I didn’t know about that they’d just take right back next year around tax time. Inside was a check for over $1500 dollars and it bore my name, Sandis’s name, and the words SSI. We were approved. No letter. No phone call. Just a check. Is this how it works?

As I opened my apartment door my hands were shaking. Tears were forming in the corner of my eyes.

A friend of mine said last night: “Well, In an ideal situation Sandis wouldn’t need that.”

But we do. We do.

Siblings (Inspired by mumkeepingsane)

I really enjoyed a post written by mumkeepingsane over at It's All Okay. She was talking about siblings of a child with special needs. This blog entry of hers got me to thinking about my two, my veritable pumpkin and my ephemereal peanut.

I've always felt blessed with my two beautiful children. Gracie was born when Sandis was 2-3/4 yrs. old. I became pregnant with my beautiful peanut just around the time that it was becoming more and more apparent that Sandis was not your run of the mill two year old. Sandis was a two year old that achieved remarkable feats of: climbing, sneaking, running, hiding, and getting into things he is most definitely not supposed to. When Sandis was 2-1/2 and I was 7 months pregnant with the peanut to be, he climbed up into the very top shelf in my kitchen (an admirable feat even for a five year old, much less a two year old) at inbetween two to three am to garner access to my purse. He then took the purse down from the cupboard (so exquisitely out of reach i felt) and dumped it on the floor below, only to imbibe several (an unknown amount) of my anti-anxiety pills (klonopin). This small feat landed Sandis in the hospital for at least seven days. Imagine also the amused looks I got when I told this story, to unbelieving ears....

Gracie herself was sick at birth. She spent five days in the NICU, and as such I did not hold her until she was five days old. She quickly became fascinated with her older brother. Sandis, in turn, was fascinated with his baby sister. He took to sneaking into her crib every night, just more of his midnight sneaking, but this I could deal with more than wanderings outside and purses dumped on kitchen floors. I remember the depths of Gracie's fascination for Sandis. I would hold a bottle before her eyes, and she would follow that bottle with her eyes everywhere....Unless of course Sandis entered the picture. This boy was more special than even food to her!

As Gracie grew (but did not walk until 18 months and did not sit until 9 months) my two children were unseparable. Sandis undertook the caretaker role. He was always overwhelmingly protective, and he has even been known to scold me for being "mean" (yes even to this day.) He will not let her fall too far behind, and she is the one and only child that he will give half of his candy to, WITHOUT prompting. He does it because he LOVES her. He will kiss her to stop his tears, and he will hold her at night when she is afraid. They are beautiful. I have over and over again recanted how lucky I am to have two children who so easily understand their importance to one another.

But they are both special needs children. And I am a special needs mom who is often overwhelmed. And I wonder so often, will they realize what they are missing? Will they be mad at what they don't have? Will Gracie be jealous of the time I spend with Sandis? Will she feel that the difference in discipline is unfair? Will Sandis be angered at my tendency to baby my little girl? Will he bristle at my additional attentions to her?

Gracie must endure the time I spend with Sandis working on his home Occupational Therapy regimen. She must be patient as we go over schedules and compartmentalize our day. She must understand that sometimes Sandis needs to do things a certain way. She needs to do this and she does. It is all she knows and it is all she ever will know.

Sandis must understand that there are nights that Gracie will sleep with me. It is just easier to have her close when she is ill. He must understand that she ALWAYS gets to get dressed in my room and he NEVER does, because Gracie needs help with her braces. He recognizes that she cannot do things with pencils and crayons and work her hands like other children. But it is just how she is. That is the only way he's ever known her. And he loves her still. It is all he knows.

And one day both of them will look up and realize how unique our family is. I hope they feel blessed by what they have with eachother. I hope they build off of eachother. I know Sandis will understand that physical disability is not a precursor to ridicule or failure. He will know because he will watch Gracie everyday overcome each problem she has with her joints and muscles, and he will watch her poke her fingers and take her shots every day. He will watch this and she will seem just as wonderful if not more wonderful as those of us who are not physically challenged. Gracie will understand that a neurobiological disorder is no excuse for not succeeding in the world. She will watch her brother grow and she will watch him succeed. And in the meantime he will make her smile and laugh and love more than anyone she will ever meet.

They are so lucky to have eachother. And damn. I am so lucky because I get to be a part of something so stinking beautiful.

My New Running Machine

Ya, you can say I'm fairly pleased. I haven't taken a run yet. I'm planning that for 8 am tomorrow. It should be something or rather nothing short of fabulous (you know how those first runs are!)

Today was interesting indeed. Bob and the kids and I set out to pick up my treadmill around 10:30am. We figured that because the treadmill was only (haha ONLY) 240 pounds that we should be able to get it upstairs ourselves without paying the 130 buck delivery fee. haha. We get the box into Bob's Durango and it is around six feet long and about four feet wide. Needless to say we were both inwardly cringing about lugging that box just the two of us up the stairs.



When we arrived at my house we decided to open the box and just carry the treadmill up in parts. What we didn't figure on was that the treadmill was only one part as the only assembly required was putting on a few bolts. NICE. (honest). The two of us with some fabulous teamwork managed to maneuver this thing up the stairs, outside of the box, without dinging denting or desroying it. Pretty rough to do when I live in a building built in the mid-seventies with a stairwell that is, well, intended to kill or badly injure the unsteady of gait!



I didn't really count on how much space it was going to take up. This treadmill can fold up, but really, with the layout I have going, that is just stupid as it ends up being a big tall folded up treadmill in the middle of the room. I don't want to run facing the wall, so this is what I get. I like the way it looks though, so until I kill my shin at some point in the middle of the night I'm not completely hating how I have it positioned. Like I have a whole lot of options (as you can see....)



I did manage to give it an extremely small trial run (see my sexy gut?). It ran okay and didn't seem all that noisy, I'm hoping the neighbors don't notice any noise when I am running at 5 am!



As a side note, I have figured a perfect punishment for naughty behavior. I'll just make them run a mile. Knowing my kids, well, they would be marathoners in no time!



Picture note: I don't think Bob even realized that he comes with a 30 year motor warranty! I took this picture before he even realized why (he just knows I think he has a cute butt!)....;)

Endocrinologist Revisited

The other day I had my quarterly, thirdly (something along those lines) endo visit. We went over some pretty exciting things this visit, so I figured I would share.

To begin with, I obtained a letter from my doctor pertaining injectables (blah blah blah blah) to have on hand for my flight to my mom’s graduation in May. I also set up a shot plan (I’ve never had one, well not with Lantus, only Regular) for if (rather when) my pump breaks. So next time my pump decides to visit the great God above, I’ll shoot myself with 12 units of lantus and say good-bye to pump therapy for at least 24 hours.

We also discussed my desire (need, infatuation, neurotic obsession) to obtain the Minimed CGMS pump system. This time she was completely on board with me, although the past two visits she really wasn’t. I have documented hypoglycemic unawareness which has at least one time resulted in a car accident (passed out behind the wheel, whole nother story). She told me she would write a letter to the insurance company for me which states that essentially I could die without one and that would leave my two special needs children without a mother and that basically, they could be liable for my death if they don’t pay for this CGMS system. My doctor is a freak, she rocks! She was grinning the whole time, having just come off getting a CGMS system approved for another gal through her insurance using a similar letter. We’ll see what happens with that eh?

On to A1c, I had such grand ideas eh? 6.5? haha. I went from a 6.8 last visit to a 7.2 this visit. Meh. I don’t understand how with a 169 glucometer average I can reign in a 6.8 but knock that average down 15 and it goes UP. Ah well. I’m not worried about it all that much. I’m not so unhappy with it, and I know I’ll be back in the sixes next time. We all have our opportunities to step off the line every once in a while eh?

So here I am, anxiously awaiting said letter from my doctor to start the pursuit of not happiness, but the elusive CGMS system. I’ll let you know what happens with that.

Arrrrrrrrr….How to Be a Good Pirate

We are a pirating household lately, oh yes we are. We are the lovers of the Jack Sparrow and the haters of the Elizabeth (that crafty crafty gal).

Has anyone around here watched the Pirates of the Carribean movies? The kids and I finished watching the second one, Dead Man’s Chest, yesterday. The pumpkin and peanut both greatly enjoyed the first one, and although I’d already seen the second one and not enjoyed it all that much, my kids ADORED this movie.

We were quite a sight to see yesterday evening. The part where (don’t read this if you haven’t seen the movie) Jack Sparrow goes fighting into the maws of the preying mammoth octopus rendered my son a miserable and teary mess. I’m talking sobbing. He was inconsolable over the loss of our dear friend Jack Sparrow. Not exactly the reaction I expected, but muffling my own chuckles over his dismay, I comforted my boy as best as possible.

Later that evening, I got both the kids tucked snugly in their beds. Gracie was quite satisfied sucking her thumb and snuggling up with her puppy and care bear. Sandis on the other hand was still mulling all the issues in the Pirates flick. He kept hollering out questions and statements from his top bunk which had me chuckling to myself. Here is the best of these:

Sandis: “Mom! Mom!”

HotMama: “What honey?”

Sandis: “You know what I am thinking mom?”

HotMama: “What is that Sandis?”

Sandis: “I’m thinking that Jack isn’t a very good pirate.” (must be all that rum…..)

HotMama: “Why are you thinking that?”

Sandis: “Because he turned his back on the octopus when he should have been shooting it! It doesn’t make sense that he didn’t use his gun! I would have used my gun!”

HotMama: “Well you know, he had his back turned to the octopus because Elizabeth locked him to the ship and he was trying to get out.”

Sandis: “Why did she do that if she just kissed him?!!! Why did he kiss her?!!! That doesn’t make any sense!”

hahahahahahahaha, yes son you are right, it doesn’t make any sense at all. And you are right, Jack is not much of a pirate…….

The Diabetes Spectrum

I have an endocrinologist appointment today. It seems like lately my diabetes has been on auto pilot. I haven’t been doing fabulously but I haven’t been doing stinky either. Just chuggin along…..

I looked up my averages for the past 9 weeks and 141.6 is my low weekly average while 169.3 is the high weekly average. The average of it ALL since January 1 is 154.5, and if my calculations are correct, that should give me an a1c of about 6.5. I’m not holding my breath. Last time it was 6.8 after being in the 7’s (7.2) the time before that, and that was my first time in the 7’s in a long time.

I’m expecting some swings to begin once I start doing the treadmill thing in the mornings. It is always so darn icky what that exercise can do to you, and I know the first month back in it will more than likely not be pretty. I can have a pretty evil post-exercise spike that is entirely unpredictable, so we’ll see how I figure that out, AGAIN.

I met my OC New Me goal, already. I’ve lost ten pounds since January, although I can’t figure out where it went because I feel just as fat. It will be so good to add running back into my life in a way that totally makes sense. Sometimes what we try to fit into our lives fitness wise just doesn’t make sense. I think that is why we fail. I had tried to run outside, but that didn’t make sense to me because first I didn’t feel safe, and second I hate leaving the kids alone in their beds. I tried to do Tae Bo tapes but I wasn’t heeding the fact that I HATE TAE BO and no amount of morning do-it-ness makes me hate it less. But running, I love to run, and now that I can feel safe concerning myself and my kids, it should be fabulous. I wonder if I should watch movies on my computer while I run? Or just listen to music? Or listen to music on my computer’s mix? I should buy a computer with a TV tuner…..But then I would have to buy cable, and I don’t want that…..

Gracie’s blood sugars are ridiculously fabulous since she was raised up to one unit of Lantus. Seeing blood sugars primarily 80 – 130 helps me pretend that she doesn’t have diabetes. She had one 190 and another 245, but they quickly came down, so pretending prevails. I’m not even writing her sugars down because when we go into the doctor they don’t even want to see what I’ve written, they just download sugars from her meter. I don’t have any trends I need to capture before doctor’s visits at this point, and when I do, I certainly won’t use their little book. I will use my own spreadsheet and customize it to her needs. Sometimes I wonder if this is even diabetes or just insulin resistance? And how long can this stage last? There is so much we don’t know about cases like Gracie’s because before glucometers in the home there wasn’t the capabilities to test your child’s blood sugar out of the blue. Am I in the denial stage of grief? Perhaps…..Or perhaps diabetes, too, is a spectrum disorder similar to autism. As in, each person having varying degrees of pancreatic function (C-peptide level?) until they cease to have any pancreatic function at all. (I’m talking type 1’s here people).

Hopefully I will return joyous after my doctor’s appointment this afternoon and post an a1c that I will be preening over. Regardless, diabetes is so little on my mind lately. At least my diabetes. I go through my daily motions that I’ve been doing as long as I can remember. Logging, writing down what I eat and what insulin I take, changing sets, treating lows….It is just the day in day out everyday of my normal life. Diabetes is just normal. And that is pretty okay with me.

The Ins and Outs of Personal Credit

My personal credit has been, for some time, a personal nightmare. I've been slowly building up my said credibility but man, if you choose to deal 100% in cash and don't feel like selling your soul for a used car (what? $400 a month is too much for you? meh...) you aren't getting any brownie points from corporate America.

I can attribute my shitty personal credit to loads of shitty personal finance decisions as a 25 and under consumer. Having "seen the light" concerning finances, but making under 30K a year, my ability to clean up said credit is extremely limited. I have spent the past three years ensuring that I am in no one's debt, but that simply is not enough in the corporate credit arena. I also need to establish debt and show that I can be a compliant debtor, making those monthly payments by the letter on the date indicated by the money giants such as HSBC.

As of yet, I have not taken that step. Not because I lack the desire to see a credit score on the climb (and above the 500's range), but because the offers I receive for credit are in general, RIDICULOUS. Why would I want a credit card with a $300 limit that is accompanied by an 89 dollar annual fee, a 119 dollar origination fee, and a 17.95 montly fee. WTF? Who would agree to this? What planet do I seem to originate from? IAMASUCKER planet?

Recently I have been receiving offers of credit that border less on ridiculous and more on "perhaps reasonable". So what did I do today? I applied for and was approved for a credit card with a moderate credit limit, plain old variable interest rate, and a "reasonable" ANNUAL (not monthly) fee. I decided that now is the time to invest in my credit, and hopefully, a subsequent credit score increase. We'll see how that works out. But really, as I near thirty, it is exciting to be achieving new levels of financial independence and clearing all those seemingly unreachable peaks of credit-worthiness. So anyhow, heres to HSBC and all that money I will never pay them (such as over-limit fees, late fees.....)

As a side note, I bought a brand spanking new treadmill yesterday (or rather put down 400 dollars!) It is awesome, folds up, is not cheapo bottom of the line, but just nice enough to meet my needs. I took a jog on it, and even had my glucose tabs, glucometer, lancing device, and test strips all out in the "drink holders" to see if it jived during the run. It is nice, good for me, and it will mean that I will have the capabilities to run again! Running is such a part of my spirit. Since the time of Gracie's and Sandis's diagnoses, I haven't had the capabilities to run like I used to before. The only time I really can is around 5 or 5:30am and I don't feel safe leaving the kids alone at home and me out on my own in the darkened roads. So this treadmill is huge, HUGE, HUGE!!!! I spent around 900 bucks and I am excited about its arrival when I finish paying for it next weekend (although I somewhat mourn my laziness pending its arrival). I'll put up pictures when it gets here!

A Talk With An Advocate (The IEP Journey Intensifies)

If you are a parent who is in an IEP process and you are scared, uncertain, or worried that your child isn’t getting what he/she needs please please please contact an advocate. I have been hesitant to do so, hoping to give the school district the benefit of the doubt, and doing my best to maintain a written trail of correspondence outlining the process as we journey through it. It has not been enough, and when Sandis’s teacher encouraged me to contact PACER, I was scared. I don’t want to stir the pot. I don’t want to dislike the people who work with my son. I don’t want the people who work with my son to dislike me. Sandis’s teacher took the initiative I am too uninformed to take, and prompted me to make what may have been one of the best decisions in my life.

I called PACER. I talked to an intake volunteer who already had several concerns about possible violations in our IEP process. She referred me to an advocate. I faxed evaluation information and my letter trail to the advocate. I talked to said advocate today. She is AMAZING!

A couple of statements she made stand out the most from our conversation.
- We will not focus on desired services, we will focus on problems shown by the evaluations that are not adequately addressed within the IEP.
- We will let the school district find their own solution. The magnitude (presumably) of needs shown in the evaluations and not met by the IEP should point them in the direction we are aiming for (shared aide).

She has also advised me to:
1. Send a letter to Sandis’s special education case worker letting her know that I expect to receive his completed IEP within a reasonable time frame, or ten school days. She advised this as I have not yet received the IEP and our meeting was on February 22.
2. Do NOT sign the IEP. Check the conciliation box and we will proceed from there, with my advocate at my side.
3. Review my copy of the evaluations and highlight EVERYTHING that I identify as needs.
4. Create a written documention of our IEP timeline, documenting the process from the date that I verbally requested special education evaluations up to the present date.
5. List all ways that Sandis and our family has been harmed due to the length of this IEP process. List alongside this what would recompense for this harm.

I feel so much better about where we are going now with Sandis’s IEP. I do have fear. I worry about what they will think of me when I reveal that I have obtained an advocate. I worry that things will get nasty. I am a fairly amiable person and I hate conflict, but I only have one son, and my son only has one time to do this education thing. Because of the love I have for my son, and my determination to see him succeed, I will face conflict. I will stand up, even if it isn’t comfortable. I will ask for what he deserves and needs. I will do this. I will.

Please join me on my journey. This should be a learning opportunity for all involved!

Caught Off Guard

Every once in a while, I am overcome by the need to cry. It weighs on my heart. It is an overwhelming physical tug from my eyes to my chest that struggles with it’s desire to heave. My soul wrenches with the need for such an obvious release of emotion.

It catches me off guard. There is often no readily apparent reason for the emotion, for the sudden gasping and internal struggle. I believe it is a culmination of life, a culmination of the joys I experience and those encounters that leave me with only confusion.

One of my coworkers has a son in Iraq. You know, Iraq, that far away place where our troops have taken residence for so long fighting that war that no one seems to REALLY understand, unless of course you are in upper management (isn’t that how it goes with most things?) Said coworker left an assortment of things her son had sent her from Camp Fallujah in Iraq (his camp.) There was some money, there were some medallions, a couple pictures, and two memorial leaflets. I skimmed over the assortment with minimal interest, until my eye caught on one memorial, one one specific aspect of it. Birthdate. The boy who died was born in 1985. That’s a lot younger than me. It was a jolt. My mind thinking, this is a baby! A kid!

Now of course, 1985, this man is 21 or 22 years old. But still. All of it started to make less sense than it ever has. And I’m not talking war. I’m talking about parents making funeral arrangements for their children. The WRONGNESS of it all. I was caught off guard. I am caught off guard.

I stood in this kitchen at work, and I mourned. I felt grief. And I knew, I knew in such a personal way, that the grief I felt for this man I never knew and never would know, was not even existent in comparison to what his mother felt. What she is feeling, still.