Coping or denial?

The other day my Mother said if she were in my shoes she would be fresh out of tears. That she would be crying every day all day. Unlike me who has cried a few times, but nothing major. She asked me if I understood what was going on. Or if I was in denial! I wasn’t quite sure how to take that. But answered. Of course I know this is real. I’m living with it every day. But it made me wonder if I have messed up coping skills.

When I had my Psych evaluation for transplant. She too asked me how I felt about my "situation". Well honestly, if it had to happen to someone, I would rather it be me than anyone else. I mean what if it was one of my brothers and sisters. Or one of my boys, or any child for that matter. I wouldn’t wish this on anyone. So I take what life gives me and I deal with it. I’m aware of what I have and what I am facing in life. But If I cry about it and wallow in it, I wont get anywhere. Not saying that its the wrong way to deal, its just not how I deal. I move forward the best I can. I talk it out. Mostly to my husband. Or I write it out here for the whole world to see. How’s that for coping?

I mean really? How are you supposed to cope with something like this? When I was 18 weeks pregnant, I was told I have a rare and sometimes fatal liver disease. I was told that I might have to deliver my baby as early as 28 weeks. That my body might do into shock and I could get deathly sick after delivery. Then I was told I also had a rare blood disorder that would cause blood to clot and that too could kill me if not treated. I gave my self injections twice a day and overcame my fear of needles very quickly. I was told I was possibly going to need a shunt put in and eventually a liver transplant. After delivery it was test after test after test. And every morning I wake up wondering if today is going to be the day that I crash. But if I let that keep me down, I will crash. And I have so much to live for to give up now.

How do the rest of you cope? How would you or have you coped with your chronic illness or that of family members?

Read More

Good news is nice

Guess who got a letter in the mail today. ME! And it was good news to. Almost as rare of an occasion as my rare liver disease :) I’m in such a silly mood tonight. So be warned...

Anyways! Earlier today I got a call from the Transplant Clinic asking if I had gotten the results of my OB but I hadn't. Unlike the rest of San Antonio, the clinic was still open and trying to get all my results together so they could decide whether or not to place me on the transplant list or not. Glad to see not everyone shuts down for Fiesta!

There was a letter for me in the mail today from the Radiologist and I cant say I opened it with a smile. Honestly I was expecting a bill, but it wasn’t. Instead it was letter telling me that the results of my breast ultrasounds were normal and that all is good in my boobie land. That’s right I said breast ultrasound. I guess because I am breastfeeding, I was not able to have a mammogram, so they opted for ultrasound. Fun times I tell you. But at least I know now that my heart and my girls are good to go!

Hope everyone has a wonderful weekend. Much love!

Read More

Thursday 13

13 things I would do if I won the lotto.

1. Pay off my outstanding debts. Medical bills and credit cards. Note to self, never pay medical bills with a credit card;)

2. Pay off the cars. Having two car payments in ridiculous but in our case, very necessary. One for work and one for getting me to and from appointments. The sad part is Im not even allowed to drive.

3. Put away some money for our kids. To buy what ever it is they need. I hate not being able to buy them all the cool things because the money went to my medical bills and medication. I’m afraid one day they will resent me for it.

4. Help out family. Our parents have helped us out so many times, it would be nice to give back to them. Payback all the free rent they have given us. The food they have bought us and for the bills they have covered for us.

5. Buy a house of our own. God what I would do to have this. I don’t need anything fancy. Just a place to call home. Where the boys can be boys, where I can eat in bed if I want to and where I make the rules :)

6. Help my little sister out. Buy her a car, rent her an apartment, help pay her college tuition. Our bond is one more than sisters, she is like a daughter to me and it kills me that I cant be there for her like I want to be.

7. Go on a vacation. A real vacation. Where we stay where we choose, eat local food, relax and do whatever we feel like doing. I would love to do another cruise. Or go back to Hawaii and pretend like I haven’t been there a million times. Or just take a road trip to the beach. I just want to get away for a little while.

8. Spurs season tickets for my husband. Or Cowboys tickets. Either way I know he would enjoy himself. He works so hard to support and take care of us, that he deserves something for him.

9. Go home next year. Unlikely, because of money and medical reasons, but my baby sister is going to be graduating from High School. I hate that I cant promise her Ill be there. I don’t want to miss it.

10. Have a real wedding. With a dress and family and friends. Not that I don’t cherish the day we did get married, but at the time, we just wanted to be husband and wife. Maybe after my transplant and when things settle down, we can renew our vows. A fresh start after all the things we have made it though.

11. Have another baby. We want another baby. I always wanted a big family. I’m talking 6 kids. But after years of debate, we settled on a max of 4. I let fear of another miscarriage keep me from enjoying being pregnant with my oldest. And with my second son, I was passed around doctors like the newest and coolest exhibit. Everyone wanted to poke around and scan and see what was going on. I would love to have just one, normal, uneventful, full term, healthy pregnancy. Just once more. Why do I need to win the lotto to do this? Oh yeah, because kids are expensive.

12. Start my own photography business. I enjoy photography so much. Especially children. I look back at the photos I have of my boys and want to give that to others. We forget about all the little things, the faces they make, the way they sleep, their favorite toys. I have pictures of these plus more that I look back on and remember that exact moment in time.

13. Donate. There are so many great charities out there. Though the course of my illness, I have found so many. And its sad how many people out there could help, but don’t. And not only to charities, but to our schools and research. I would probably end up giving money away to perfect strangers. I would love to be able to give back to those who really need it.

Read More

Day 4

Well I am done with the last of my evaluation tests. Today was tough.

8am MRI (Almost fell asleep)
9am Lung Function and Arterial Blood Gas tests (Almost passed out)
10am Chest X-rays (Almost undressed in front of the tech)

We had a little time to go eat lunch. Then it was back to the Liver Clinic. I fell asleep in the waiting room. My phone had died so I had no entertainment. It was cold in the waiting room and my husband was just to warm not to cuddle up to. Catnap!!

2pm Psych Consult (Almost cried)
3pm OB check up (Almost fell asleep again)

And by the time we got home, my brain was scrambled, my legs were like Jell-O and my body was hurting like a train had hit me. Just enough time to sneak in a nap. Thanks to my wonderful husband.

And now its time for bed. I have been trying to soak in all the information we have been given over the past few days. Ill be sharing a lot of what we talked about. The consults I had really helped me put things into perspective and got me thinking about things. So be prepared! Until then...much love!

Read More

Day 3 of my evaluation

Here's my line up for the today.

7-8am 2D Echo
8-9am Nuclear Stress Test
11-1pm EKG and cardiac consult
1:30-2:30 Dietary consult
2:30-3:30 Social Worker Consult
4:30-5:30. Mammogram

The tests I can handle, but I cant wait to see what the Social worker has to say. The book says its their job to 1) Help understand the transplant from a realistic perspective. 2)Identify possible barriers. 3)When possible make recommendations to address identified problem areas. I'm sorta excited to meet the dietitian. I know I need to eat healthier, but its easier when someone breaks it down for me. What I can and can't eat. I know basically what I am to avoid, but maybe this will help it sink in. I have so many diet restrictions from so many doctors maybe this can clear things for me!

Read More

Im sick, not stupid

How can you be a good mom when you doubt yourself? Or when everyone doubts you?

Sometimes I feel like there is constantly someone looking over my shoulder. Not just one person, but many. Every decision I make is questioned by someone or another. I am not mentally handicapped. So yes, I have HE (Hepatic Encephalopathy) Yes that means at time I am confused and sometimes I forget what it was I was doing. But the one thing that is always on my mind...my kids.

I wake up in a panic every morning, because I am afraid I left the gate open or that the baby got out of his crib. Even though I woke up 5 time in the middle of the night to check. When I am making breakfast for them, I am double checking to make sure that the baby's food isn't to big and that my 4year old is eating enough. Right now I am typing and staring at the monitor, I stop typing every time I hear the baby roll over. And Ive already checked in on him twice. He is in his crib safe and sound. I hate this whole second guessing myself.

I do it because sometimes it seems as if everyone else is doubting my parenting, so I start to doubt myself. If my MIL hears one of boys cry she immediately check on us to make sure that they didn't get hurt under my watch. Or if I'm on the phone with my family and someone yells or cries, I feel like I'm being interrogated. "Where were you when Anthony fell?" "Why was the baby playing with that toy?" "Don't you thing they are playing to rough?"

I do not let my kids play with knives. There are gates on the stairs and the doors have the child proof knobs on them. I do let my boys run and jump and make noise. We make tents out of bedsheets and play hide and go seek. But I am always aware of their safety and know when enough is enough. I know what can be climbed, what is to high to jump off of or when its time to calm down. That is something that will never go away. I might forget to take my meds, or forget what I am doing. But I will never forget my boys, where they are, who they are with or what they are doing. Its not easy to have to constantly focus on them, to remind myself to focus on them. Not because I don't want to but because sometimes its hard to. Its draining. But its my job, and one that I take very seriously. These boys are my every things and I am trying to be theirs.

Check it!- They are both buckled, have on sunscreen, hats and water for hydration ;) I cant be doing that bad right?

Read More