Celiac Disease

This is my new title. How do you like it?? :/

Shortly after I had Reese, I broke out in a rash on my arms and elbows (that later spread to my knees). I figured it had something to do with all the hand/arm washing I had to do going in and out of NICU several times a day. When Emily was in NICU, I had rashes and cuts all over my hands.

A couple weeks later, it was getting worse. I brought it up to my doctor at my 6 week check-up. From my research, I thought it could be Dermatitis Herpetiformis, which is the Celiac rash. I told my doctor I couldn't have Celiac. I had no other symptoms. She agreed and gave me a prescription of something. She said to come back if it didn't get better.

The rash went away but came back a couple weeks later. This time, I had found a blog by a mom with Celiac. What she wrote could have come from me!!! None of the typical Celiac symptoms (though there are like 300 of them!!!), but something made a light bulb come on. She even had a relative who died from non-Hodgkins Lymphoma (which is what my father died from). Celiac is thought to cause NHL, and Celiac is hereditary. I decided I needed to be tested.

To my surprise, three of the five blood tests came back positive. I had the rash biopsied, and it was negative. I also had an intestinal biopsy which came back positive. I had been expecting this from my research, but I was still in shock. Two months after a simple rash, and I have been diagnosed with something with no cure. The only "treatment" is a major lifestyle change . . . no more gluten!!! Unfortunately, most people go 10+ years with symptoms before being diagnosed. I have to credit Google and my doctors who listen to me and my concerns instead of brushing me off!!!

I haven't been perfect at it. I am not at the point where I can be the person in the restaurant asking for the allergy binder or sending a plate back because a piece of bread touched it, but I am doing great at home. I don't know if I am just early stages or what, but I don't have bad reactions like many do. My major issue is exhaustion. I blamed it on the kids all these years, but a couple days gluten free, and I woke up feeling refreshed!!!

Plus, I HAVE to have one more order of  spicy cashew chicken from The Cheesecake Factory . . . and maybe one more chicken fried steak from The Gristmill Restaurant (never been but heard their CFS is the best!!!! (Then I will learn how to make those recipes gluten free so I don't have to miss out when the future craving hits!) 

I also had a high anti-nuclear antibody test. I am being referred to a rhumatologist for further testing for possible auto-immune disorders like Lupus. Hopefully it's just the Celiac takling. I don't need anything else right now!!!

So I am one of the newest members of this "club!" 

Triple Stroller

I am in need of a triple stroller. While I was pregnant, I kept telling people that I didn't want to push a big triple around. I had the Bob Duallie, and that would work. I would just wear Reese in the Ergo as much as possible.

Yeah . . . right . . .

Try changing diapers or controlling four other kids with one strapped to your chest in 100 degree heat. It's just not working. Plus, the twins may be two years old, but they have only walked in a store maybe three times!!! I keep those boys strapped in and controlled!!!! And I am not one to stay home. I have to listen to comments all the time, but I take all five kids out by myself a few times a week.

I found the one I want. Brand new . . . it's only $1000. :/ It is soooo perfect!!!

Thankfully, I found one on Craigslist for $500. Now I just have to sell the Bob so it's not quite a dent into our finances buying yet another stroller.

This is probably one of Kevin's peeves . . . I have too many strollers, according to him!! But really . . . I need the big comfy double jogger for long treks, walks, etc (and Kevin is the first to admit the Bob is the best stroller we have ever owned!!). I also need the smaller double umbrella for short trips, when we travel, etc. I also had the front/back double Graco when they were younger because they didn't make a side by side that would hold two car seats. I also have the single snap n go for Reese right now. I want to get a good single stroller when the twins grow out of riding, but I can hold off on that one!!! LOL . . . I can see his point . . . but I am down to three strollers and will sell one to get this triple. I think that's a pretty fair trade!!!

Wish me luck . . . :)

Creative Punishment

Sometimes a time out or grounding them from something just doesn't work. So I have come up with some creative punishments!

 - Right now, Ethan has to flush the toilet for Emily every time she asks!!! He told her some time back that if you say "Bloody Mary" three times and then flush the toilet, she will appear in the bathroom. :/ So Emily is scared to flush!!!! Because he is the one who freaks her out, he can deal with it!!!

 - Emily had basically everything taken away from her at one point. She didn't care. So I grounded her from wearing "pretty dresses" for a week. She was devastated!!!! Every time I tell her to get dressed, she asks if she can wear a "pretty dress!" That was a miserable week for her . . . 

So tell me any creative punishments you have used or plan on using . . .

Update

Guess I should do another update so no one is confused . . . :)

I am still Misty . . . still married to Kevin. I am a stay at home mom to FIVE kids! :) Reese joined our family in February. So we have Ethan (9), Emily (5), Killian & Sawyer (2), and Reese (0). (That's what Emily tells everyone. "This is my baby brother, Reese. He's zero!"

More to come . . . I PROMISE this time!!!!

Oh, and the whole breast issue a year or so ago . . . resolved. I had a biopsy, and it was nothing. I ended up pregnant with Reese shortly after, and I was supposed to go for a follow up at 1 year, but I was a little busy with the baby and kids and all . . . maybe I should get on that!

Third time's a charm, right???

Pretty sure this is the third time I have attempted to blog (on this blog!!!). LOL

So . . . let's hope it works out this time. I have a lot to say . . . :)

Nothing yet . . . but pain.

:( I'm still having a lot of pain.

The 21st of May is when this pain started. I was hoping it would be gone by now.

I did go back to my doctor and tell them I NEED to be referred to a specialist. Thankfully (if that applies here), I had a lot of redness and swelling that day. So she was able to see these changes. She said that along with the mass from the ultrasound, and it's time I see someone else.

Now I'm jumping through hoops with the insurance company to get the referral sent in and approved. Stupid government (I don't say that often!!!) has a program where my referral must be sent to the closest military hospital first. They can decide to take me on as a patient or refuse it and let the original referral go through. Ft. Hood is the closest, but it is still 45 minutes away. With 4 kids, I just can't see driving all that way for appts, especially if I have to have some sort of surgery and follow-up appts. It's ridiculous . . .

I had an appt with the specialist for Wednesday but had to cancel it due to these insurance issues. It's rescheduled for Thursday afternoon. Hoping and praying it goes through, and I can be seen tomorrow.

We are going out of town on Friday for a week . . . which could delay this process even longer and leave me in pain longer. :( Not good timing . . .

More Questions

Well, the radiology report says the mass (left breast) is "probably" benign. It is "probably" fibroadenoma. I don't like the term "probably" in my medical reports!!!

I was going to go in and ask for further testing. Then I woke up this morning in even more pain. So I made another follow-up appointment.

Today, my right breast is swollen and red . . . and extremely sore. My doctor took one look at the changes and said this plus the suspicious mass, and she is referring me to a specialist for a possible biopsy. Unfortunately, the doctor she wanted to send me to doesn't accept my insurance as primary insurance. So we have to find someone else. After talking to that office about what is going on, she said I need to be seen within the next week. Talk about scary . . . :(

I have a lot of thoughts and fears about what it could be, but I'm going to try to remain positive.

Right now, I can only nurse on the left side. The right is too painful. I imagine my nursing days are coming to an end because of all this. But I would rather be healthy and pain free than continue to nurse.

So again, I ask for prayers and positive thoughts. I hope to have better news in the future . . .

Not so good news

I have been having some pain in my breasts. I thought it was a blocked duct, mastitis, or thrush, but all seems to check clear. It's a little better now, but there is still a lot of pain that shouldn't be there. At first, I literally cried and screamed the entire time each of the boys nursed. :( I was miserable. It's still painful but not to that extent. This has been going on for about 2 weeks. 

I have gone to my doctor twice, and this last time, she said that if I'm in that much pain, we should talk pain meds. I told her no . . . if there is pain that shouldn't be there, figure out what it is and fix it instead of covering it up. :/ Her reply? Well what do you think it is? Uhhh . . . that's why I'm here . . .

Anyway, to appease me, she sent me in for blood work and an ultrasound. I'm still waiting on the official results and reports, but they did tell me (and I saw) that there is a mass in one breast. They took images and measurements. The radiologist said that I should get it rechecked in 6 months. I am not happy about that!! If it's a mass that shouldn't be there, I want it figured out sooner than later. (I sound like a broken record!!! Why do all these docs want to cover up things and take the "wait and see" approach?) They said it is not the source of the pains I'm having, but something to watch. They are sending the full report to my doctor. So I wait . . .

I am in need of prayers and good thoughts that it's nothing serious. :( I have let my mind wander to places I don't want to go . . . and it is a scary place to be.

One year old!!!

I can't believe it, but the boys are ONE year old!!!! :)

We had a little family party at my aunt's in Ft. Worth a couple weeks ago. It's always nice to have an excuse to get your family together!!

On their birthday, we had a little special day for them here at the house. They loved opening their gifts. Once Killian realized how to tear the wrapping paper off, he wouldn't stop!!! They got their big gift today . . . a Little Tikes bus slide activity center thing. It's so cute, and they LOVE it. They have figured out how to climb up and slide down all by themselves. Killian yells "weeeee" the whole time. They are so much fun!!!

So happy first birthday to the two most amazing little men in my life!!!!! :)

Boys check-ups

They are both doing great.

Sawyer is 22 lbs 8 ounces and 29 1/2 inches long.
Killian is 20 lbs 1 ounce and 29 inches long.

Sawyer's kidney ultrasound shows a little dilation still, but there is no more hydronephrosis. We get it rechecked in a year! :) Hooray for a good report!!!!