I was folding clothes tonight and the thought crossed my mind that I was folding some of these same clothes just 2 years ago, but for a the other d-kid. Not in a million years did I ever think I would be saying that....
It has been 8 very long months. Most of them pretty much a blur. I put on a happy face most of the time but inside it just hurts. Hard to tell someone when they walk to up to you and ask how you are doing that you are doing horrible and just want to go sit in the corner and cry. So, instead of weighing every person who asks me how I'm doing with that heavy burden of my reality, I just tell them things are going good. We are getting by.
Honestly that is just it. We are getting by. We aren't doing good, we aren't doing bad, we are just getting by. I am doing what I have to do and that is about it. Sometimes I feel like I am just going through the motions of life but like I say, you do what you have to do, right? Even with Lovebug's blood sugar numbers ALL over the place and Princess's always hovering in the 200's. I struggle with burning myself out. Yet, I can't burnout. Their life depends on it.
Add to that the stress of my hubby moving from 1st to 2nd shift, going to the doctor to find out I just moved into the overweight category and the fact we are looking at yet another diagnosis. Yep, burnout....I am trying to avoid you. I don't know if you caught the part where I said "another diagnosis". Yes, you did read that correctly. Another diagnosis. No, not of Type 1 though. (thank GOD it's not that)
We go a call from the endo's office back in October that Lovebug's yearly blood work came back testing positive for Celiac's Disease. (for those of you who don't know what Celiac's Disease is HERE is a little synopsis) I suppose I wasn't totally surprised, but at the same time I was shocked. When I had taken her in the week before to get her blood drawn at the lab I just had this feeling that something was wasn't right I never would have thought my "intuition" would be right. It has always been a big fear that one of the girls would end up with Celiac's Disease. Not a fear I ever really thought I would be looking at. Then again I never thought we would deal with a second diagnosis of Type 1 either. I must be naive or something...
I didn't think it would be Celiac that came back positive. All I knew was something was off. Ironic thing is she has very few symptoms of Celiac. Up until a couple weeks ago the only symptoms were bloating, constipation, crazy low blood sugars (followed by rebound high blood sugars) and leg cramps. All those I would have normally contributed to other things, never would have linked them to Celiac. The past couple weeks Lovebug has been complaining of stomach aches a lot. Especially right after eating.
So here we are, waiting. I have never been so tired of waiting. Trying to keep the thoughts of this possible diagnosis (and all that comes with it) out of my mind so I can enjoy the Holiday's. Which I am enjoying, it's just always right there, like a little tap on my shoulder a thousand times a day forcing me to push it to the back of my mind over and over again. Hopefully we will have some answers soon as Lovebug will have a biopsy in a couple weeks to confirm rather or not if she actually has Celiac. (the biopsy of the small intestine is the only way to confirm Celiac.) It's only another month or so, I have waited this long....right?
It has been 8 very long months. Most of them pretty much a blur. I put on a happy face most of the time but inside it just hurts. Hard to tell someone when they walk to up to you and ask how you are doing that you are doing horrible and just want to go sit in the corner and cry. So, instead of weighing every person who asks me how I'm doing with that heavy burden of my reality, I just tell them things are going good. We are getting by.
Honestly that is just it. We are getting by. We aren't doing good, we aren't doing bad, we are just getting by. I am doing what I have to do and that is about it. Sometimes I feel like I am just going through the motions of life but like I say, you do what you have to do, right? Even with Lovebug's blood sugar numbers ALL over the place and Princess's always hovering in the 200's. I struggle with burning myself out. Yet, I can't burnout. Their life depends on it.
Add to that the stress of my hubby moving from 1st to 2nd shift, going to the doctor to find out I just moved into the overweight category and the fact we are looking at yet another diagnosis. Yep, burnout....I am trying to avoid you. I don't know if you caught the part where I said "another diagnosis". Yes, you did read that correctly. Another diagnosis. No, not of Type 1 though. (thank GOD it's not that)
We go a call from the endo's office back in October that Lovebug's yearly blood work came back testing positive for Celiac's Disease. (for those of you who don't know what Celiac's Disease is HERE is a little synopsis) I suppose I wasn't totally surprised, but at the same time I was shocked. When I had taken her in the week before to get her blood drawn at the lab I just had this feeling that something was wasn't right I never would have thought my "intuition" would be right. It has always been a big fear that one of the girls would end up with Celiac's Disease. Not a fear I ever really thought I would be looking at. Then again I never thought we would deal with a second diagnosis of Type 1 either. I must be naive or something...
I didn't think it would be Celiac that came back positive. All I knew was something was off. Ironic thing is she has very few symptoms of Celiac. Up until a couple weeks ago the only symptoms were bloating, constipation, crazy low blood sugars (followed by rebound high blood sugars) and leg cramps. All those I would have normally contributed to other things, never would have linked them to Celiac. The past couple weeks Lovebug has been complaining of stomach aches a lot. Especially right after eating.
So here we are, waiting. I have never been so tired of waiting. Trying to keep the thoughts of this possible diagnosis (and all that comes with it) out of my mind so I can enjoy the Holiday's. Which I am enjoying, it's just always right there, like a little tap on my shoulder a thousand times a day forcing me to push it to the back of my mind over and over again. Hopefully we will have some answers soon as Lovebug will have a biopsy in a couple weeks to confirm rather or not if she actually has Celiac. (the biopsy of the small intestine is the only way to confirm Celiac.) It's only another month or so, I have waited this long....right?
5 comments:
Heather, you have had so much thrown at you this past year. My son was diagnosed with diabetes and celiac last year during the holidays. Thankfully, we were able to wait until after Christmas to start his new gluten free lifestyle. We would never have known that Andrew had celiac if it wasn't for the diabetes diagnosis. He complained of leg cramps, but I chalked it up to growing pains.
My thoughts and prayers will be with you all!
I suppose knowing what you are dealing with, what your gut was cluing you into, is better than not knowing. But, still, one more thing is never fun.
I'm with you on trying to keep that happy face on...no need sharing the burden with those who won't get it anyway and sometimes I think trying to 'make' them understand just adds to the burden.
Hope your holidays are wonderful!!
Oh dear Heather - having 2 with T1D is hard enough - we've just passed the one year anniversary of my son's diagnosis - 7 months after my daughter was diagnosed! It's hard - but as you said, you do your best, you get through each day.
I'm so sorry it's looking like you'll be dealing with celiac too (here in Aus it's "Coeliac"). On the support network I run here we have lots of families with T1D and Coeliac - but funnily enough - I don't think we have any multiple T1D families with Coeliac. In my own family out of my ex-husband's 5 kids (2 of them are mine) - we have 2 with T1D and 2 Coeliacs - but none with both T1D and Coeliac.
I hope you get some answers quickly and get lots of help with managing a GF diet if the dx is confirmed.
Sending you all lots of hugs and love over the holidays x x x x
Hanging in there is all you can do when life throws you a curve ball, and sometimes just hanging in there is good enough. You will overcome as time goes on, even if you have to face a celiac diagnosis. I hope this is a false alarm and will be praying for you. Because you have dealt with more than enough lately. I admire your strength. You have to take care of yourself as well, so you will be strong enough to take care of your two girls, catching up with sleep as much as possible, even a short catnap during the day.... it's important.
Dear Heather, You are an amazing mother with so much on your shoulders. We have three girls too--our youngest (8 yo) has Type 1 and celiac. Celiac is another big change and it's mostly annoying. With our daughter (she was 6), her celiac dx ended up being a gift. When she went GF, she felt so much better. We got our happy girl back! Her diabetes also calmed way down. If the tests confirm celiac, you may have some silver linings like we did. They keep me going.
You are a beautiful mother. Some days are just one day at a time and know you aren't alone. There's a lot of love in this community when it feels like too much. We're all in this together. I hope the holidays can bring you some glimpses of peace and renewal. :)
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