Butterfly Kisses & Bedtime Prayers

"Butterfly Kisses after bedtime prayer. Stickn' little white flowers all up in her hair. Oh with all that I've done wrong, I must have done something right. To deserve a hug every morning and butterfly kisses at night". *** For parents of children with diabetes and adults who are living with Type 1 diabetes. We are looking to share stories, ideas, concerns, and laughter.***

Thursday, April 20, 2006

This awful beautiful life!!

So much going on these days my head is about to overload. Some is just so fu^^&% bad but some is a bit of humor in this otherwise sucky life we are experiencing. First, The sucky part to get it out of my system. I spoke with a representative at the Equal Employment Opportunity Commission today. My complaint has fallen on deaf ears. I spoke to the federal line last week and was told that I do fall under the same guidelines for discriminatin if it is a family member or if I was the one disabled. Well this woman tells me NO and that Wal-Mart didn't have to make any specials accomodations for me, I told her I spoke to someone at the federal office. Ma'me we are the federal office. No I'm prety sure your in Tampa lady. Maybe in her mind she is in DC. Then she tells me I made it look bad on myself for walking out. I beg to differ. I will not work for a company with so little compassion for their employees that carrying my own @@#$ cell phone for an emergency is such a problem. End of story. My family and their well-being comes first. So then I have to go in for my paycheck. I go to the back and get my smock out of my locker to turn in along with a letter telling personnel how i was treated. Hey it may alert someone to the rude behavior of the manager. Although I doubt they will care. So I get to the office and poke my head into the window for my check. Sitting there is the horrible $%$%$^ cashier supervisor. She gives me a look of "if you show up for work tonight your either getting written up or fired". So I ask for my check, chicken out of handing over the smock or the letter and high-tail it out of there. I put the smock back into my locker. Think I will mail the letter and the words I quit! This woman got me so furious that I don't want to deal with her again. But I still had the presence of mind to go around the store and get everything we have been needign like comfortors for the girls, material to make all our curtains etc. I go to the checkout cash my check and ask for my employee discount. Hey I got another 15.00 out of them before leaving!!!!

So that is the end of my first job in many years. What a disaster! I will look again when my nerves are more prepared. I found out today that the law does not protect our children. How can we as their caregivers be unreachable in an emergency, or have their sicknesses held against us. We have children who require special care but we also have to work. Now I am just so nervous about going out there to work. The unbeleiveable attitude towards people with diabetes is horrible. I always feel like I am being judged that we somehow caused this. With all the hype about children getting type 2 from poor diets and exercise, ignorant people think this is the same. So there is no compassion at all.

Then speaking of no compassion Dave went to the VA today. You have to know that they pushed him out still broken. His hand surgery failed which they knew amidst the process and they told him that he would have to get it fixed by the VA because they would not stop the MEB. So he has a broken hand that needs surgery. Then his back is so bad he is on morphine for the back pain and the hand pain. He gets referred to the hand specialist over 3 weeks ago. They have the referral but haven't even looked at it yet to call him for an appointment. Then he asks about what more they can do for his back. NOTHING. They never sent him to a neurologist or exhausted all treatments but as far as they are concerned they won't do anymore. Unfuckingbelieveable. I am so stressed out I can't describle it in words. I just want to run away somewhere. But we can't afford to. I am thankful that I have lots of supplies for Carylanne on hand and that we have medical until Sept. I just want to be able to settle into civilian life and find jobs we can manage and take care of our girls. This just totally sucks!!! NOw onto a lighter better note......

We got carylanne's latest HBA1c last week. Mind you this is from Dec to March and includes all of our trip and leaving our home etc.
7.2!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I could have screamed it from the highest mountain! We thought for sure it would suck because of all the stress and change for us all. But it was great. I have found a good way to keep her numbers down these days. walking around Disney. She gets alot of exercise and it is keeping her numbers in great range.

Next I have a bit of humor I just have to relate after all my ranting and raving.... I warn you to not read this with anything in your mouth as you may choke or have milk/wine/soda shoot out your nose!!! Ok here it goes...

Last night well after the girls are in bed, Dave and I were in bed. Not exactly sleeping. So right in the middle or rather nearing the end we suddenly hear

"I can't sleep"

Not from the door oh my $%^$$% word Carylanne is standing right next to us. Dad's butt in the air moaning groaning etc etc (not to be too explicit but you have to really picture the scene to understand my sheer mortification right now). She practically tapped him on the shoulder. He jumps off into the bed and we grab for the sheets.

"Go into your room I will be right there"

She sleepily hobbles back to her room. Now I don't even want to face her. What is she going to ask/say. The girls know about sex. In fact due to their precociousness they know a lot. First they asked too much last year when we learned anatomy. Then my neighbor thought having 5 kids in 4 years would be great. That brought up too many questions from the girls.
"MOmmy if Mr Ben can't afford to have more kids why do they have sex to make one?"
(ok I had todl them that people have sex when they are married to have a child. They thought after that there is no more reason to have sex. NOw I am backed into a corner. truth or make up a stork story quick. I go for truth.

"Married couples have sex because it is a special gift from God. Sometimes that gift does produce a baby and that is one of the resons why God made this a special time etc) "

So she comes out with

"well you and dad aren't having any more kids"

"Well yes honey but..." Then the light pops on

"oh gross you and daddy still have sex!!!"

"It's not gross and most married couples have sex at least some of the time. But its a private matter that we don't discuss or ask about."
Another light pops on

"Grandma and Grandpa too!!"

Mortifiction speads over her and her sister's faces. That night when dave comes home from work Christianne, my forever ballbuster goes up to him and says,

"I know your little secret" then she runs down the hall giggling. Dave wanted to eat by himself because he felt he was being stared at all night.

So now we are faced with totally being caught. I am dying at haviong to answer questions etc. First i ask Dave the obvious question 'Why didn't you lock the door????" I go into her room. Tell her it is rude to barge into our room. I tell her to hug Ruby and go to sleep. She is out in 3 minutes. Was she sleep walking??? Will she remember what she saw??? Jump to this morning. No mention of anything. No remarks from little sister which would tell me she does remember and just told Christi. Christianne would not have resisted saying something. Tonight she can't sleep again. Only this time i am typing. This time I tell her not again like barging in last night.
"mom I'm sorry I must have been confused. All I remember is standing next to you adn having you tell me to go back to bed"

Oh my God she is so traumatized she's going to end up on Dr. Phil someday!!!!! I am buying a lock for the door this weekend and a cow bell for theirs!!!
What a week. I need a good drink. Only don't tell my girls I could go for a "sex on the beach"!!!!

Monday, April 17, 2006

A New Job Come and Gone

Well my new job lasted all of three days!! YUP a whole 3. I just have to relate to all of you what it was like. First please keep in mind that I have not worked in over 6 years. I know that this sounds great to anyone who has had to work and I am greatful that I haven't had to. Not that we have lived on much money all these years. It just wouldn't have been practical with Carylanne and with our military life. This is the first job since diabetes and since Dave's injuries as well.

So I go in for orientation. Very boring! All the paperwork and rah rah about joining a new company. Hey I just work part-time for economical purposes. really didn't care much about the company. I was able to go home for lunch. Took all I had to leave again and go back. But I did. I tried to speak with the personnel trainer about an ADA form. You see I did not want them to hold an absense due to medical reasons for Carylanne or Dave against me. Plus I needed to request a special accomodation that I be allowed to carry my cell phone on vibrate in case of emergencies. They did not think it would be a problem but I needed to fill out a form etc. Well I start that monday and there is no one there to get the form from. In fact no one from my department came to greet me and they stuck me in front of a computer that whole night doing online computer modules. For 6 hours. I almost fell asleep. Talk about very uninviting. No direction. Just hey go do this computer stuff until someone comes and gets you .Then no one did. Anyway I went home that night and cried for 2 hours. I hated leaving my family to go to such a messed up place. So the following morning I decide I will go talk to my new boss. Someone whom I have yet to meet. You see I interviewed with a different manager and mine never came into orientation and didn't see her the first night. I wanted to make a change to my schedule as I came to realize I could not work that many nights and I needed to get this ADA stuff figured out.

SO I try to go in early in the day to talk. If they don't go for the scedule change I was prepared to say sorry I will look elsewhere I understand you need someone more etc. Well they refuse to talk to me unless I am on the clock. So I go in that night. After waiting through a meeting I finally get to speak to the new boss. Well this is where it gets really interesting> First we iron out the change in the schedule. She doesn't seem happy but is willing to make the change. I made some concessions on the nights and we figure it all out. Next I ask about the phone. I get an "ABSOLUTELY NOT". sHE PROCEEDS TO TELL ME THAT "EVEN SHE DOESN'T HAVE A PHONE ON HER AND SEES NO REASON I SHOULD HAVE MINE" Also she tells me that if I had mine others would want theirs and would say they have a sick child etc etc. So I get ready to stand up and tell her, well I can't work here them because I can't be unreachable. Well she stills says no but tries to keep the conversation going More of she doesn't even carry her phone. So I tell her that my husband served in the army and always had his phone, even out in the field in case we needed him. She decides to call in her boss. She tells me she is sure he will say no but she will ask. I call that CYA because she knows I am walking. So he coems in and she tells him the scoop. He tells me that if I can PROVE TO HIM why i need it he'll approve it. THEN HE ADDS "as long as you know its not for chatting on" I was furious. What a sexist remark. I am sure if I was a man he wouldn't have said that. So I say "Curt I am 35 years old with 2 disabled family members as per the ADA. I need this for emergencies and am old enough to know the difference. Well we finish the meeting and I am pretty upset that I am being harrassed over something so simple. I need to be reachable end of story. I then go to ask my boss something and she is really curt and short with me. Well she didn't get her way and made it my problem if others find out I am being given and exception to the rules. But hey not yet, only if I can prove to them I need it. Then she is snappy with me a second time. So I figure this is not going to work. I made an excuse a while later and walked out. I haven't returned. I need to officially quit this week but don't want to deal with them

Now comes the good part. I called the ADA and asked if they are allowed to be hostile and harrassing when a request for accommodations is made. The answer was NO. Then I ran the "chatting"remark by them too. It was sexist and I have a case for complaint. I filed a formal complaint with the Equal Opportunity Commission.

I tell you all this because I want you to know that if you need to get a part-time job DO NOT GO TO Wal-MART. This experience has been horrible and now I am afraid to go back out looking for a job. I din't expect true compassion, hey its a business but harrasing remarks and such a hard time over carrying a phone on vibrate was such a joke. They obviously only care about the bottom line or something. They preach REPECT for the individual but I certainly didn't get that.

So now i am back on the job hunting trail. Very reluctantly but we can't live forever on our savings and Dave is getting worse not better. It will take a few more months until we find out about his pension. Well thanks for listening. Boy what a week!!!!!!

Saturday, April 01, 2006

New Doctors

Well yesterday we took the girls to their new pediatrician. Ever find a good doctor but the staff s##$!!! Well first we get there and fill out gobbs of paperwork. Usual procedure. Then have to witness cat figths amongst the staff. Boy an incredible group of proffessionals this was. Then one of the Assisistants asks me about Christianne's shots. She proceeds to tell me she is not up to date and will be getting some shots today. To which I respond. "No she isn't". So this woman flips the chart on the countr in front of me and says"well then she isn't getting a physical then" she turns to walk away as I tell her "We'll just see what the doctor says". As I say this the other woman tells her. It's no problem because they're Tri-care anyway. Then tells me "we don't immunize tri-care patients because Tri-Care doesn't pay us enough" Yep serve your country for this! I will be putting in a complaint to Tri-Care. You see Tri-Care makes a contract with the doctor or hospital etc. they agree to be paid a certain amount. thats it. They can't ask for money from us as we have no co-pay. So to get around it they are refusing the service. So I will be letting Tri-care know of this little breach of contract. So then we find out that the receptionist who copied the shot records doesn't evidentally know how to use a copy machine. The records were cut off. They are up-to-date. Just like I said! I wasn't blindly letting them give another shot until I got to the bottom of it which I explained. Well the snotty woman ended up apologizing. I think she got the gist that I wasn't going to take it and she shouldn't mess with me.

So we get the physicals started. They even check the urine. Do you know your daughter has sugar in her urine. Well DAH she has Type 1 diabetes. No keotone right? Well thats fine then. We finally meet the doctor. She's fine. Nice enough. Not too bubbly but that is ok. She is thorough and gives me all the prescriptions I need. Now I have what I need for the next 6 months and the referral to the new endo. She wasn't too up on what the HBA1C should be and was the one who asked about sugar in the urine. Not too sure about sugar numbers but hey she isn't the specialist.

I got Carylanne into the Neumour Children's Clinic in Orlando in May Soonest I could get was May 19. I was told by the peds doctor that I was lucky to get in that soon. It is a diabetes program though with nurse practitioners and everything. WOW actually diabetes support system. They are on staff at Arnold Palmer Children's Hospital. It's supposed to be a good hospital. Hopefully we never need it!

Now I can get everything filled and hold on til May. They drew blood for the HBA1c yesterday. I expect this one to suck. With being on the road and the stress of moving, I am expecting and 8.5 or higher. I pray I am wrong though. Her numbers these last couple weeks are horrible. I am tweeking basals and carb ratios, checking early morning and finding her at 5m to be 304 or higher. ARRGGHH!!! I know she is in a growth spurt but this is very annoying. 3 weeks ago we had low problems. Then she totally changes gears and starts going high. I am going to change out today and try different insulin. It's got to be more than a growth spurt. She is up to .95 units during pre-dawn and nearly as much for her basals the rest of the day. And she is not being a couch potato. I am hoping we are not experiencing insulin resistance at this age.

Well time to do her shower and change out. Let's hope we get somewhere the new few days. I hate not being able to get ahold of these numbers.