Thursday, August 13, 2015

the reality of my life with 22q11

The reality .. 22q11 is a hard thing to live with.. the truth its a battle.. the facts its not easy living with the pieces that are known to hold you together. My biggest battle is depression, mood swings, and anxiety. the biggest and worst thing I have ever had to endure is knowing that one day I will have to explain this to my daughter.
Yes I battle depression, being fine one minute and extremely upset the next, wanting a divorce from my husband and wanting nothing to do with my family. Anxiety,, Part of 22q11. I hate it oh yea, I hate it, The headaches the feeling you get that is just sometimes unbearable to cope with. Mood swings.. one of the WORST things to ever battle. the ones you do not understand why you are upset , ok one minute and the world is just awesome the next minute.
The hardest part of all this.. being a mom and having to see your child at such a young age sit and watch her mom experiance a million emmotions at once.
Thank goodness for my family who tries to understand, who tries to be a support system, and who tries to encourage me and keep me going.
What keeps me going.. my daughter. I push through the anger and frustration that I have to live with 22q11 and she doesnt. I am quickly reminded she could have easily faced the challanges that i have to deal with and thank god daily for a healthy thriving little girl that is full of love and joy and such a blessing to have.
My issues for me did not start until later in life. I can hit rock bottom one day and then turn around a few hours later and be fine. I did not want to accept I had a lot of the mental aspects of 22q11 and have been able to live such a normal life until  my issues hit around the time i turned 26/28.  In fact if truth be told i did not want to accept I had 22q11 at all.
What changed my acceptance? knowing there are others out there that have it like me.. what frustrates me the most.. having to search high and low for treatment for adults with 22q11 and some that are brave enough to tackle a heart patient with depression axiety etc.
I am beyond thankful for my family. They have stood by me through my darkest days when I have before becoing a mom stayed locked in my room and not wanting to come out. My husband has stood by me on those dark days also. I still have my dark days but my little ray of sunshine keeps me going. My life is not easy. 22q11 is not easy to understand. do I regret writting any of this no, . Living with the issues i have and continuing on with life is robably one of the geatest pleasures i have with this syndrome.
I have hit rock bottom while derek my husband was deployed and toughed it out. when I married that is when I finally decided i needed help. that is probably one of the hardest things I have ever had to admit to myself., Getting help was probaby one of the best things I could have ever done. I have even reached the dark days of suicide thoughts. thanks to the love again from family they bailed me out and gave me a dose of reality.
I write this tonight with a heavy heart and the fact that a lot of us out there deal with these same issues. life is tough with this syndrome. we have to eventually attempt life and try to succeed . I am now on medication for depression mood swings and anxiety. I am picking up and continuing on with life again.
being a mom is not an easy task while having 22q, but i get through it. life is tough, but having 22q11 is tougher.. people aways say what doesnt kill you only makes you stronger. I have lived I have achieved and i will survive life with this syndrome. I will go on and raise my little girl and I will go on and enjoy life. Life ws never meant to be easy.. sometiems the good lord above gives those of us an extra challange in life to p rove that we can succeed . Thank you for taking the time to read about my struggle with 22q11 deletion. "Never let it stop you and never let this syndrome bring you down"

Saturday, February 7, 2015

a new mom , a new valve and new challenges.

 A lot have been asking about my biggest challenges being a mom with 22q and CHD to a healthy non cud and 22q baby. I had to take a lot of time and think about my challenges and obstacles I faced now that my daughter is 11 months old.

My biggest challenges with my 22q issues are only just mood swings and anxiety . I have been successfully able to stay off of medication for a year now. I do best in calm and collected environments and have found recently that a lot of what I eat can also effect my moods. I have tried to eat more healthier and stay away from fast foods and seem to be in better moods.

With that being said: My biggest challenges have been staying focused on what I need to do from day to day being that Myranda is completely healthy. It seems with a lot of 22qers we have troubles trying focused.

My other challenges have been accepting the fact that my daughter does not have 22q or TOF like I do since I was told for years that I could not have kids and would pass down everthing I have and they have a higher chance than most with having the deletion and TOF.

My husband is now out of the navy and working as a civilian. My biggest struggles have been to re adapt to the civilian life. I basically do not have to worry about anymore deployments , i do however miss the military life , but hopefully he is going to be able to re enlist in the airforce soon to finish out the 6 years he had left in the navy.

I also recently on november 20th had to get a new Pulmonary valve put in . That on its own was a challenge for me with being a mom also. I was up in Missouri at the time (that is where my husband is from ) My valve I currently had due to being pregnant played out which is rare for a bovine. I only had my bovine for 4 years. I went a head and got the melody valve put in via cath. It seems to be doing well now and I am able to keep up with Myranda a little bit better.

One thing about being a CHD mom that will always be in the back of my mind is that I am slower . I worry about being able to keep up with Myranda as she gets older. I am waiting on the day to come when Myranda asks me about my heart and I plan on telling her the entire story and how she is a miracle to both her dad and I .

It was hard having my valve replaced and being down for a few days. I could only imagine having to go through a complete open heart surgery and being a mom . It killed me not being able to pick up Myranda for a week.

I am looking forward to this next year and what life has in store for my husband and I. My life has always been an interesting journey for some and a lot of hope for others. With the love of my family I have made it this far in life. Being 35 just means beating the odds of very little hope my mom and dad were given. Being a mom with 22q and CHD just means I accomplished something people told me I never would do.

Life is an open door for accomplishments I have learned in the past few years . I never thought someone like my husband would come along and accept me beyond my flaws. I never thought at 34 years old I would be hearing its a girl and at 35 be hearing her say mama. CHD and 22q does not have to mean there isn't life and you have to live in a bubble. I have done so much that many said I couldn't and am all the time proving people wrong. I may not have been able to hold down a job , but i can at least say I have the most important job of all being the best mom I can be with a broken heart and a few missing pieces to the most b beautiful little angel that we were blessed to raise. I do not regret anything in life I have done.

Life is not always beautiful, sometimes its just plain hard. it may not always be beautiful but it can be one of the most beautiful rides you will ever take. Don't ever hold back our hide in a bubble. A bubble can only go so far without popping. Get out experience life enjoy it grab it by the horns and keep riding.

Myranda has taught me one of the most beautiful things in life are answered prayers and god will pay attn to those that deserve it.  CHD and 22q doesn't stop me from being a mom . I can only hope and pray that valve procedures get a lot more easier.

Monday, June 2, 2014

my biggest challenges on being a mommy with 22q11 DS

        I  am often asked my biggest challenges on being a mommy with 22q11 ds. I had to take time out to even wrap my head around if I had any challenges at all as everything seemed to come together after having our daughter for me.
        My struggles I had with 22q11 ds my depression and anxiety have seemed to just completely go away lately. My biggest challenges now : accepting the fact that I have a "normal " daughter. At f first after Myranda's amnio results I was in major denial. I did not want to accept the fact she was free and clear of 22q11 DS after it was drilled and drilled into my head that if I did CHOOSE to have children, my children would more than likely be affected by 22q and also my Tetralogy.

       Everyday I look at her I think... I did it I beat the odds how and why I am not sure, I just know that God was on my side and Myranda being 22q11 DS free was the reason she was giving to us after 5 years of struggling how we were going to have a family of our own and how we were going to figure out how to avoid passing on everything.

   Is an amnio worth getting if you have 22q11 ds... YES!! it took a lot of weight off of our shoulders as I wished I was detected as early as children as now. I was not diagnosed with 22q11 Ds until I was 25 years old. I thought if Myranda does have it, I will at least know a head of time and have my ducks in a row when she arrives and know where to turn for the best care of her. I luckily did not have to use those resources I had lined up in case we needed them. Drs were even amazed she was cleared , but did educate me on the fact that if I choose to have a second child ( which Cardiologists of mine weren't allowing because of the current condition my heart has been in ) the second child could be affect and the out come may not be as mild as myself.

   Believing that I did this without all the struggles we thought I would have carrying my own child is another challenge of mine. I did it, I conquered it and will now tell others that ask me for advise on pregnancies with CHD..all I can now say is listen to what your doctors tell you . I was told not to do it and to do it all over again I probably shouldn't have went through with the process , but I just wanted the chance to be able to put it behind me. My doctors finally gave in and willingly gave me the chance to become the mommy I am now.

Myranda if anything has giving me the ability to focus, concentrate , and even control my depression and anxiety. IF nothing else ever goes right in my life from here on out, I at least have her to go back on and say look what I did when others thought I would fail. People have in fact told me to my face I would fail as a mother because of my disabilities. I took that on as a challenge and am proving them wrong daily.

I do have my days where I want to break down and cry, but when I look at the sweet little miracle I was blessed with today I learned that everything just falls together for a reason. I may have failed at things in my past , but one thing I will not do missing pieces or not is fail at being a mom. Life is is so much simplar now. I feel more human and more complete.

  I know life is full of challenges , but to me life with 22q11 and being a mommy has turned more into an adventure than a challenge. I surpassed one of the biggest challenges on just even becoming a mommy and I would not trade this adventure for the world.

Wednesday, May 28, 2014

Where Have I been and Why Haven't I been blogging?!?!?!

         Where in the world have I been lately and what has been my excuse for not blogging?!?!  Well , the last year or so has been crazy hectic. on August 26th 2013 Derek ( my husband ) and I found out we were expecting! it was an exciting time, but scary time , since I have tetralogy of fallot and 22q11 DS. We did not know what we were going to do , what road we were going to go down, but we both knew that even tho doctors told me not to have a child of my own because of my TOF, we at least wanted the chance.
           It was a chance we did not know the outcome of, however we felt that God has given us this once in a lifetime opportunity in this point in our lives for a reason. I found out in Gulfport , Ms where Derek is stationed. I then finally got the courage up to tell my family as they had always encouraged me to adopt , because of the chances of passing 22q11 DS and TOF.  I had a cardiology appointment in October of 2013 and knew right then and there Dr. Book would decide my fate of going on with this pregnancy or if we would have to terminate due to my valve pressures not being the best at the moment.
        At this appointment I sat down with Dr. Book my cardiologist, and promised her IF at any given point if i got into trouble I would agree to terminate or we would take the baby early if able too. I also had agreed to a fetal echo and amnio as well. A lot of people may look down on me for this decision but in our best interest we also agreed to terminate if the baby had 22q11 , because of my husband being military and myself having 22q11 plus a complicated case of Tetralogy of fallot, we were unsure if i would be able to care for a child 6 hours away from home that had 22q11ds. I then was told by Dr. book that this was going to be a roller coaster and would not be an easy ride and I would have to come see her monthly and move back to ATL.
       So, I picked up for the next 7 months and moved back home to ATL , GA where i am originally from and my husband had to stay behind due to being active duty military.

         month after month it was appointment after appointment. I went for a fetal echo and to many answered prayers it came back negative that she did not have Tetralogy of fallot. I then sat and waited for the amnio to come back with the fish test and to our surprise it came back negative she did not have 22q11 DS. Many will ask me why or how this is even possible since I am a carrier of both. All I can say is that the odds played in my favor and that our little girl is a blessing.
              at around 33 weeks i started to finally hit the roller coaster. Due to being on lasix's i began to have fluid issues and keeping fluid around the baby. my once a month appointments turned into weekly to monitor fluids. At my 35th week appointment my blood pressure was extremely high and fluids were back down again and I was admitted on March 5. On March 6th Our little blessing Myranda Grace Brown came into this world VIA c section at 2:15pm weighing at 4 lbs 10 ozs extremely healthy just tiny!
              While Myranda was healthy and perfect, I on the other hand was struggling with fluids. I ended up staying in the hospital for 5 days due to having to drain fluids off so that it wouldn't add anymore stress and pressure on my heart.
                   People always ask me if i would do this all over again.. honestly I can say NO. Why? because it was a lot of strain not only b wing away from my husband , but having to worry about going into heart failure or all the other possibilities that could have happened that didn't. Another reason why I won't do this again is that I may not be so lucky the next go around because of all the strain the pregnancy did put on my heart, i may not survive and also may not have a healthy child the second round. I did it right the first time and certainly had God's blessing and hand on me for 8 months he never left me and answered every prayer I had.  SO now with great pleasure I want to introduce to you our miracle Myranda Grace Brown .

Saturday, June 8, 2013

weight....big obstacle...where has it gone?

A lot of you know I have been working really hard to lose weight. As a CHD survivor who has had roughly 4 open heart surgeries in my lifetime, for once in my life when I hit my 30s I began to struggle with my weight. My last OHS ( open heart surgery) in 2010 I had retained a lot of fluid. I then started the real battle with my weight.

I lived somewhat of a stressful life when I turned 29, I married my hero. Sure every woman thinks that they marry their hero and their knight and shinning armor, but no, I really had mine. He doesn't wear a cape, he wears combat boots and dog tags and our nations military uniform proudly.

Starting out as a newly wed military wife can of course no doubt be stressful. I got married in May 2009. My husband had just returned from a 6 month deployment in Afghanistan. June, july, august rolled around and in mid August I was just started to have what they would call heart failure signs.

My cardiologist knew my PVR ( right pulmonary valve ) would need to be replaced and we were trying to plan that out and schedule it. However from August on I like I mentioned was little did I know heading into heart failure.

I was getting more and more tired and short of breath. I was feeling a pressure build up around my chest like I was told. We thought that I would be able to schedule the next replacement and be able to wait for them to complete the valve placement via catheter and get approved to have it done on me instead of a full blown OHS. However, this was not the case.

January 2010 shortly after my 30th birthday, and the day of the Haiti earthquake, I woke up feeling like I couldn't breath and basically felt like my husband was standing on my chest with his entire platoon. He was in a briefing for the  earthquake as I was texting him telling him that I needed to go to the ER.

W'hen in a briefing he cannot look at his phone. Finally and luckily we lived on base at the time he rushed home and took me to the ER. We got to the other base where my cardiologist was and she had staff waiting for us. She did an ECHO and said that I had retained 750mgs of fluid in my chest and if I would have waiting any longer or another day I would have died.

I was flown to Mississippi back home to Atlanta to Emory University where my cardiologist team resides. I remember IVs with nothing but lasix trying to push the fluids off of me so I would be stable enough for them to do the surgery.

Surgery was done, I had a lot of scar tissue built up from having previous surgeries as a child and being 30 years old it was tough for my surgeon to get thru it. It took me longer to recover since I was older. It took longer for my lungs to function and make sure that the bovine valve was not going to reject.

After I was taken out of ICU and put onto the floor, My doctors told me that it was very crucial that I lose weight. Before my surgery was done, because of all the fluid i had retained, I was close to weighing 200lbs and have a 4 ft 11 frame.

I was sent home. Went to my parents house who lives in Atlanta to start recovery process. After doctors okied me to go back to Mississippi where Derek is stationed, I begin the weight loss struggle.

My husband shortly left on a 10 month deployment, the longest deployment we have ever had since we have been together. I begin trying to lose weight then. However I started battling issues with the area that the by pass machine was put in. They did not staple it shut or stitch it they just clamped it. It kept coming open, I kept making ER trips. Finally it heeled.

Ok so 15 lbs lost while the husband was gone, that was weight watchers, a lot of point counting a lot of having to remember what I had to eat to be able to track and write down. Husband comes home, I gain 15lbs back and get depressed and give up. Husband is home for a year and then left for kuwait. I said ok I am going to surprise him and lose weight this is going to be the year FAIL. Depressed frustrated again.

2013 , struggling, having depression, fighting for rights to my stepson, husband going to a new command, husband trying to advance to first class. We have been fighting . Emotionally physically just want to give up. I go home to atlanta and ask for help from my cardiologist.

Basically this visit I was told since it has been 3 years that my valve was put in, they were concerned since i seemed to have 50% pressures. I was given three choices 1. follow their diet plan or not and 2. have a heart cath done to try and stretch the valve, if not that last option would be another OHS. I said no to 3 and 2 and YES to 1.

Whats my secret to 3 pant sizes in three months??? Now I would not suggest this to all heart patients or to anyone, ask your doctor first. Since Feb. of this year I have never EVER been successful at a diet then what I have now. I was told if I followed what they tell me to do I would see inches come off like nobodies business and could save my valve.

NO BREAD NO SUGAR NO JUNK FOOD NOTHING WHITE NO POTATOES, NO SODA NOTHING FRIED. Everything was based around salads a meat and some kind of protein and 1 egg and 2 egg whites any time of the day. Breakfast i could have eggs, bacon coffee or water. Lunch some kind of meat a protein some kind of green vegetable or any kind of vegetables, and salad, Dinner would be the same as lunch. NO prepackaged foods. Also lastly WALK.

I have leslie sansone walking dvds a good CHD friend has recommended to me that are fun and I love doing I can walk 1-5 miles. I walk 3 times a week and am about to start walking everyday. Dec-Jan I was about a size 18 now I am a size 12 almost in a size 10. The diet works. However I would still consult a doctor.

I eat what i want to on friday and saturdays and on sundays I go back to what im supposed to be eating.  I have noticed a significant difference in pictures from 2010 til now. I have noticed a difference in my moods and also I am dealing less with depression and anxiety.

So this was a long post. You asked , I delivered. At 33 years old and have already experienced what most older people would have experienced if they had heart disease, I quickly learned that my life can be taken from me at any minute. I learned my heart can only take so much and that if i have to have another surgery at this point I may not survive. I did this for my heart, for me , for my family and by 2014 there will be a new me. I am glad i did this glad I started this journey, God has more in store for me then what he is letting on.

I hope this finds people encouraged. It is important for us to take care of our hearts, ourselves, and ou health. Thank you for taking the time to read my journey to what made me start the weight loss process all over again. feel free to comment and feel free to follow me!

Wednesday, May 29, 2013

Memorial Day weekend craziness!! but loved it!

This past weekend I could re live all over again. We went to Florida for Memorial Day weekend. Derek had a 4 day weekend. We also had to visit my stepson this month started our visitation schedule. Friday night we went swimming at my parents condo in Daytona Beach. Saturday we ended up going to the Magic Kingdom. I had no idea I would be able to tolerate a packed theme park on a holiday weekend and to my surprise I did very well.
I just got over dealing with anxiety. I am and have been basically taken off of my anxiety medication , Klonopin which is a huge step for me. I thought I would have to go back on it and start taking it again because of the crowds but that was not the case. I lasted all day at disney and had a blast did not even think about me having 22q or any of my other issues. I enjoyed time with my stepson .
Sunday we spent a afternoon at the pool. I stayed most of the time in and out enjoying the long awaited two years of this time that we are now getting. Sunday evening we went to a local restaurant. Nothing like florida seafood since, we live near the gulf of mexico, Florida food is always different. We ordered gator tail and got my stepson to try it and he loved it!!
This month my husband and I also celebrated 4 years of marriage. What away to end a great month spending it with my stepson and husband as a little family that has been a long time waiting to happen!
Next month we go and pick him up fathers day weekend for the summer and have a lot of things planned.
This is a new thing for me but a wonderful thing, I am enjoying every minute of it, loving being practically rid of anxiety and on one less medication. life is good life is great prayers do get answered and life couldn't be any better for my husband and I.

Monday, May 20, 2013

Why awareness jewelry?

A lot of people have asked about my jewelry and why I started doing what I do for here is why....

I noticed that there is not much out there for 22q, i myself have it at 33 years old and was diagnosed at the age of 25. I was searching for ideas to not only keep me busy but away to bring in some income as well.

I started my company Skattered Pieces in 2012 last summer. My husband is military as most of you know so I needed something to keep me busy. Although he does not deploy he can sometimes work long hours, and with the passion I have for raising awareness for 22q11, I thought what no better way then to make something that sparkles and shines and great conversation pieces.

I am a self taught jewelry artist getting into all kinds of things like metal, beads, and wire. I tried the clay stuff but found it can make me break out etc. I found to grow really fund of hand stamping and wire wrapping.

I have made close to 53 sales, and a lot of my work has gone all over the world. I am a stay at home wife, and even have a college degree, i however chose to do my own thing where i can work in my home so that i would have more time with my husband and family.

Sparkling is apart of me and who I am. The more sparkle the better i have always said. I love anything that sparkles wether its the sun, glitter or jewelry. I can guarantee that I always come out with something original and never done before that will catch an eye or two.

I also thought, what a great way to share my 22q story and talents with other 22q families who makes a purchase from me, I do try and remember to include my story and a letter of encouragement to families.

I have a lot of ideas, a lot of hopes, and a lot of plans. I hope to eventually start sharing my story more and even traveling to different 22q events around the country. I hope you find my page on facebook under Skattered Pieces.

I came about Skattered Pieces, because with my little mind and having 22q i can be sometimes scattered and also i have so many ideas and different materials I work with.

I have enjoyed my hobby and turning it into a business that I have grown to love and best of all it is something i have a passion for and raising awareness at the same time. I hope you visit for more ideas and watch for new things monthly. I always try to have something new that has never been done being that I love a challenge and that since my life in general from day one was a challenge . i always love trying something new.