Monday, October 22, 2012

way too busy of a weekend......

     Friday started out a short day for the hubby. We also had a busy night plan. IF it was not for the new medication I am on for my depression etc, I probably would not have gone out all weekend like I have done.
     I went friday night to see one of my favorite country artist Clay Walker. I have been following him and his music since the 1990's. He was at one of the local casinos here in biloxi the hard rock casino/hotel. We had front row seats it was loud , but as always a great show.
     He talked about him being diagnosed with MS. also said that how doctors gave him deadlines and how he would be in a wheel chair by this and this time. Needless to say he beat those odds like a lot of us CHD and 22q11 babies do. He did say one thing however, that stuck in my mind all weekend that we have to do our part and beat it and not let it beat us. That entire sentence is very true and I think a lot of people tend to forget that and let some of this stuff beat them.
   Saturday we went car shopping since we put in for adoption we decided to also go down to one car and a SUV so that I would have something easier to hall kids around in that seemed to be successful and I think we found a ford explorer that the hubby and I both really liked, and we went shopping for theater seating as well since we do have a media room with a projector in our home in one of our spare bedrooms. Also Saturday night we went out for sushi etc. with some old friends of ours Mike and Brooke, who was in Derek's previous battalion with him and just got back from Afghanistan not long ago. As always we have fun together and I have known mike for a few years and we always have some good laughs about things we have done together in the past.
    Sunday was a lazy day. We have been talking about painting our living room. I had done an award wall for Derek and all of his military awards that i had framed. I enjoy showing off all of his awards, coins and also his plank ownership award as well as a beautiful hand painted seabee plate that was given to him in italy when he lived there for two years. also I have hanging on the wall both of his re enlistment certificates. I picked out a red color to bring out some of the other decor from sherwin williams. the red i picked out was from a martha stewart collection from home depot and sherwin williams didmt carry martha stewart but tried to match it as close as they could. we got home with it and it was way off and the nice lady called back the next morning to tell us to bring the paint back and she would help us pick something else out and refund our money which was GREAT customer service on their part.
       IF it was not for my new meds like my Wellbutrin, I probably would not have gone and gone and gone all weekend like I have done. I seem more up beat and not as all over the place like I have been before. My moods have been better and so has my depression. My anxiety still needs some work done on it but I go back to the doctor thursday to talk to him about it. My klonopin just puts me to sleep more then helps, but it does take away the anxiety headaches.
     This weekend flew by but it was a fun weekend. I enjoy getting out a little more now then I did before> I also got an email back from my cardiologist saying that she just wanted to see me back in six months instead of 3-8 weeks , she stated that she will do a MRI the next visit and check lung pressures more closer etc. Today I also got out and did a little bit of exercising and actually did a little bit of house work.
     I feel better, I feel normal , and most of all my happiness is coming back. I hope this feeling stays around and I hope this change stays as well. We have a busy week. I have had some orders from my etsy store come in over the weekend , and also today as well. I mailed some off this evening. I will be staying around the house this coming weekend as my husband goes to FL to visit with his little boy for his 9th birthday, Things are looking up and best of all things are looking good there is no reason to turn back now.
   As clay walker says in one of his songs. " I don't give a damn what the world says, I am gonna do what I was born to do. no turning and no running." Those are my new favorite sayings and a new things especially with 22q and CHD to live by.



   Signing off for the night, I have been finally sleeping a little bit better since i feel like a normal person now. I hope and pray everyone has a blessed week. I also will pray for all of you CHD/22q moms and survivors out there that may read my blog tonight or this coming week and please comment I would love to hear from you. Good night and God bless you all.

Friday, October 12, 2012

new journey

    This week we began a new journey, in our life. We were told that due to my heart condition, I would not be able to have children on my own. We begin looking at other routes. We have been back in forth with several different option and have done a lot of discussing different options.

    After my husband spent a weekend in Florida with his son, he came home and surprised me with filling out adoption papers for the state of Mississippi for a child of our own. We have done tons of research and decided this was the best route. We have learned there are a lot of Military resources and also grants to help with the cost of adoption.

  It will be a lesson of patients and waiting and handling emotions etc for both Derek and I. Derek is home for 3 years now and in a new command and will not have to leave UNLESS he chooses to go on an assignment himself and go help out the army. We had talked about starting a family while he was gone since he will be home for awhile and won't have to leave and here is the details below on why i could not handle carrying my own child and why i did not go the surragancy route.

 Basically my lungs would not be able to handle a pregnancy once i got to full term, I probably would not even make it to full term with all the pressure etc it can put on me. My body would just not be able to handle it. My heart also with a leaking tricuspid valve still and my PV still at a moderate leak would be in danger as well. It also with the medication i take would not be a good idea. Plus i would take the chance of passing on not only tetralogy of fallot, but also my 22q11 deletion.

now there is ways to keep from passing 22q11, but we would still be facing passing on the tetralogy.

  In the meantime I have learned that there are over 2,000 children in the state of Mississippi available for adoption. So therefore we have gone on with the plan to adopt and have mailed out the application and will begin that journey.

  I was sadden that i could not have my own child, but picked my self back up and with the support of my husband once again and my family found another way to get that dream of mine to come true to become a mother.

We will share our journey with every own through our blog and fb. We are at step one right now and just have to wait for step two. We are both excited, but both have mixed emotions about this, but in closing this blog I will say, this is our best option, we will have a healthy child, and this will be an experience for the both of us and most of all cannot wait for our new addition.


Sunday, October 7, 2012

been busy....

Lately I have been busy. I have seen a new doctor to help me with my mood swings and irritability , and also depression that I have been fighting with because, of my 22q. I have had a lot going on. My husband gained visitation rights to his son recently who lives in Florida. That in itself has been a major challenge for me. He can only be around him right now to reestablish a relationship with him.
I can understand that to an extent, but it is HARD to let him go and be with his child when you have to stay behind.
We were recently told the week before he left that I would not be able to handle a pregnancy due to lungs not being able to function for two people and my body not being able to handle extra weight. That set me back into a bad depression mode, but we are NOT giving up on trying to figure out how to get a child of our own.
I have delt with many challenges this week. IT seems the devil was constantly working at me. Thanks to my new doctor and my medication that is currently helping out quite a bit the devil DID not win and get the best of me totally.
I did in that period of time lose interest in my craft room and got behind on my orders that I had that came in.
      I had to explain that to some costumers, some understood and there is always one that did not want to understand my situation or seem to care about situation and yet his child has 22q also. Everyone deals with 22q differently, everyone has different symptoms of 22q. I was judged by this parent who placed an order from me because I did not ship his order right out to him and was compared to a big cooperate company such as Apple since he said he got his Iphone faster. He placed his order on september 28, that point in time my husband was in Florida with his son. I cannot drive due to some of my meds that i take for my 22q and anxiety. I explained to him nicely. He told me he needed the order for an anniversary that was last weekend BUT did not tell me that when he placed his order. I always believed in the saying from Abraham Lincoln that you can please some of the people some of the time and most of the people most of the time, he was one of those. He was very rude to me and I do not handle rudeness very well with my 22q. My feelings easily get hurt and are hard for me to control and sometimes it takes me awhile to get over something like this situation because he insisted on trying to bash me on a public Facebook page instead of bringing it to my inbox ,email or etsy page.
  I seem to believe that some parents do not understand fully 22q. I see some wanting to be bullies to some of us adults with it on some of the support pages which is NOT right. Like my mother says there has to be ONE in every crowd. She is right. I ended up refunding his money and did not get his order out since he did not seem to care about my situation i was dealing with last week. and honestly if this was an anniversary gift for last weekend he waited too long to order the item in the first place.
   One thing that is hard for me to handle with my 22q is rude people. I will not tolerate people being rude to me, I will fight back and that is what I did. In this world today it is full of rude and unpleasant people. One person can start making a difference by trying to be nice and support people like I try to do in a lot of the support groups.
 This past month has truly been a life lesson and a testing lesson for me. I am slowly coming out of depression mode and starting to feel normal again. My husband told me last night he was starting to notice that more and more since my medication was upped a bit more. It is great to feel like a normal person again, I am taking things one day at a time. I got most of my orders i got behind on due to my depression mailed out yesterday. I want to thank the people that understood what I was going through, feeling, and being faced with.
   22q is a never ending journey and adventure. For some its mild , for some its severe. but for me it is mild and I am quite thankful. I do struggle and I let it be known I struggle. I do not hide it from others and I educate others. I am thankful for some of the friends that I have that do NOT judge me and that accept me for who I am and what i've got. I am grateful that i have such a supportive husband and family as well, without them I wouldn't be the happy,bright and caring person I am today, encouragement for us 22qers indeed goes a long way.
  Derek and I are facing choices, also a journey up ahead. As my favorite country music artist said in a song, " ITs a long road up ahead I don't give a damn what he/she has said I'm gonna do what I was born to do" that line has stuck with me and continues to do so. My life is a journey, my life isn't over. my life has a purpose and I will continue to share it with you all as long as I am able.
I will have another blog and announcement this week once we get all details done.
To anyone reading, THANK YOU for allowing me to share my journey.
I have enclosed a link to my etsy shop of 22q jewelry that I have created and other items that I have made for awareness for 22q. Keep checking for other things. My christmas order deadline will be Nov. 15. If anyone wants to order jewelry for christmas please have orders in no later than that. Thank you all have a beautiful sunday and a beautiful week.