My Whole World

My Whole World

Friday, January 31, 2014

My Medical Chaos

Maybe? Just maybe if I type it out, it will help me get it out of my system. 

First, NO! I am not dying....... yet. I have been asked this more times than I should be, and that is my best response. Most of you know about my skin rash. It started seven, YES SEVEN YEARS, ago. When I first got married Tom noticed this small spotty rash on my lower back, and after going to a few dermatologists, I never got any answers until a year ago. I found a dermatologist that was so intrigued by my case that it fueled a type of determination and a possible hope that something could be done. 

Now rewind, what started to be a no bigger than a baseball card size rash on the very small of my back, has now grown up my back, wrapped around my chest and up my neck into my scalp, and is NOW coming down my arms and possibly down my legs. The diagnoses that I finally got was confluent and reticulated papillomatosis, and what I refer as CRP. A rare skin disease and which none of the treatments known to help the symptoms NEVER helped me, so we questioned the diagnoses. 

I have been on so many experimental ointments, creams, medications that I started loosing hope to ever being able to have beautiful skin ever again, and not only that but the scary idea of getting an infection in the rash on such a large area of my body would surely make me septic and die. BUT then came a rare opportunity to be apart of a grand round at the U of U hospital for rare cases that a huge group of doctors come and look at ever inch of your body and ask you questions, then they discuss your case together and come up with a game plan. 

After voluntarily getting naked for all these strangers, I received a call later that day and the news I received was something I was not prepared for. The doctor said they reviewed all the pathology reports and agree that is the most severe form of CRP that any of the doctors have ever seen. They project that it will climb down my arms and wrap onto my face and down my torso, and the only medication that could help me is so potent that I would have to be done having children. So I opted for now to do the experimental phase and try a few new things that I have not tried, only to find out that I cannot bare children during or after I start the experimental phase and that I need to really address the "sterile" issue as soon as possible. 

Now, things I NEVER want to hear "you already have two beautiful boys, be grateful for that." and "you shouldn't ever get pregnant again to begin with, your last one almost killed you, this is God's way of saying NO MORE!" and lastly, "be glad its not something much worse, you should be lucky that is all it is." These are things I have already heard and I warn I might just start crying on the spot if I hear something as ridiculous like what I have already heard. 

Recently this week I have had a series of tests to even see if my body could handle the medications, and the news seems to be a little more discouraging every doctors visit with more warning and more information. 

Just be kind. I do not want sympathy. I do not wish for any advice. Just know I am handling the cards I have been dealt with as much grace as I can and I lean on my family and loved ones. Truth is, I wanted another baby..... very badly. 

The next month I will be discussing all of my options with my doctors, and take it one day at a time and count my blessing one by one. 

Thursday, December 19, 2013

Confluent and Reticulated Papillomatosis Update

More stitches in my back. I had more biopsies taken to figure out what I have. They took pictures and possibly every doctor in a 20 mile radius, came in my little white room in the corner. White coat after white coat had the same expression of confusion and bewilderment. Neither are a good sign. I still have no answers or possibilities.I once was told CRP, and at one point Darier's Disease, but now I have no answers. Back to the blank canvas of wonder.

I do not want to post a picture. I thought at a point in my life that I could move on and not focus on the insecurities, or feelings of shame because after all the months and months of minocycline, accutane, creams, steroids, and random treatments, nothing. I have no control over this growing disease on my body. I gave up. After the treatments, money and lots of pain.... I gave up. I could no longer subject myself to anymore "trials" or "experimental treatments".

Then it started looking darker, and growing at a rapid pace. I started noticing it getting worse, but really stopped caring. Although I wear t shirts everywhere I go because it is high on my chest area and up the back of my neck, so maybe I do care if people see it...

Then I saw my primary care doctor. He was concerned and lectured me about the risk and he sent me to get it looked at by my dermatologist, who now has sent me to see a specialist at the U of U hospital. Now I wait. Now I care again, and now I have a glimmer of hope, that maybe someone will figure it out and help me.

Please don't let me down. Give me a diagnosis and let their be a treatment that works.

Friday, December 13, 2013

Family Pictures

Our family is growing, and I love that we always get family pictures often. This year is my absolute favorite. I love how they turned out. Such a great trip to Vegas, and such great memories with my family. 

Tuesday, December 10, 2013

Elf On The Shelf gets MY Approval

Why on the "elf" is people making such a big deal about Elf on the Shelf?

Beats the heck out of me!!! I have read a few articles posted about the negative opinions about the little elf doll that goes around creating laughter from kids, giving something for kids to look forward too, and adding FUN to the holiday. Who CARES about the shenanigans your elf gets into? WHO? As long as it makes your family giddy with excitement and you enjoy watching your children's faces each morning, then who has the right to pee on your parade? Stop listening to the negativity, PLEASE.

Make the Elf on the Shelf whatever you want. If you want a mischievous elf getting into crazy and over the top antics then you have my approval for giving your children a sense of humor. If you are a more spiritual elf and you leave scriptures and Christ like sayings to boost your families Christmas and holiday spirits then, you as well, have my approval. If you want a service centered elf, giving heartfelt acts of kindness and inspiring your family to do the same, then you have my approval. If you want an elf that plays hide and seek with your children and requires minimal work, then you DEFINITELY have my approval!

You see? It is your tradition, and it is your elf. You can make your elf whatever you want and as long as it brings you happiness and memorable memories that you will treasure forever, then go.... be not afraid of the negative Nelly's. Go ahead and make your family happy... I APPROVE!

Wednesday, November 14, 2012

Confluent and Reticulated Papillomatosis

 This is what is looks like

I have been officially diagnosed with CRP just this last month, it was between CRP and Darier's Disease but final results came back as Confluent and Reticulated Papillomatosis (or the shorter version CRP). For those who do not know, I have had what started out to be a little rash on the small of my back shortly after I got married in 2006. I could feel it and it would irritate me a little, so went to a doctor and was misdiagnosed and started down the path of so many creams, and so many medicated ointments. Nothing helped. 

Here I am SIX years later and it went from the small of my back to up my back, wrapped around my chest, up my neck into the left side of my scalp and starting to make an appearance on my upper arms. With it growing and becoming increasingly annoying and painful I decided to follow the referrals to a dermatologist that seems to enjoy taking on such a complicated case, and not to mention this man is a genius. I did what needed to be done, many biopsies and many tests. I was put on Accutane for 7 months straight after I had Carson, it seemed to help by not letting it grow or crack and bleed anymore, but then it started to grow at a faster rate, and I became more and more uncomfortable. Now I am started down another road, EXPERIMENTAL TREATMENT. Nothing like being a guinea pig to make things interesting. 

I am on four different treatments, one is efudex which is a type of chemo to treat skin cancer, also oral medication. I will tell you efudex BURNS BAD, and the absolute worse is the clobex spray I apply to the scalp. OH MY WORD! I could cuss and not be ashamed! I have 30 days to see what happens and I am in the first week, so three more to go.

My fear is that it will consume my entire body, for any woman this does not help all the insecurities we seem to have anyway, or getting an infection and becoming septic if this spreads. I came to terms with the ugly possibilities and told my husband, and his response was "we have been through so much already, but there is nothing we cannot get through together." he hugged me, and I cried. I went the longest time not telling people because at one point I was VERY embarrassed but if you know me, that did not last long and I no longer care what others think of my weirdness.

I will try and keep updates on how things go. Nothing like keeping things interesting! I might have to be the first that starts a foundation or something.

Wednesday, March 7, 2012

Carson's Condition

First thing I would like to write is THANK YOU, thank you for all your prayers and love, and phone calls, messages, and visits. We are blessed with a very supportive family and friends.
Carson has had recurring issues of vomiting and diarrhea with no other symptoms like a virus or fevers. Recently he had been throwing up puddles of clear liquid (acid) randomly. I took him to the doctor because this was new for him, and wanted some type of answer, and was not given an explanation to what is really going on. We continued to struggle with the vomiting and diarrhea since had failure to thrive and lost weight at about 8 months old when he went down to 13 pounds. This struggle of keeping him hydrated and gaining weight has been weighing heavily on Tom and I because the doctors cannot figure out why and have tested him for everything that they think of.
With this history, he started vomiting more and more, and we no longer could keep on top of it, February 22nd I tried to get him up in the morning and he would no longer stand, walk, or lift his head up. I called Tom and rushed him to the doctors office by our house and they rushed us out the door to the ER. When I took him to the ER my hope was to just hydrate him and send us back home, but after 11 sticks for IV placement I knew he was in more trouble then I realized, and when the ER doctor came back to tell me he was critically hydrated with a critical bi-carb level. He was admitted to the hospital and more tests and things were done. He was hydrated, and was doing well, medicated so he would not throw up, but the diarrhea was terrible and constant. Every time they had to draw for labs, he was poked between 7-11 times. Terrible bruising, his hands, arms, feet and head were so bruised because of all the digging with the needles, it was torture for him. He is such a tough kid he really is! With him improving with the IV fluids the Doctor decided to send us home, and gladly we were more then happy to take him home to let him sleep and avoid all the blood draws. We get home, and not even home an hour he begins to vomit everything he ate at the hospital. Tom held him while he vomited most of the night, I cleaned and we all cried. My heart just broke for him. They have tested him for most food allergies and tested him for everything the doctors could think of and no answers. Tom and his father gave Tom a blessing. The next step was Primary Children's, we have been there quite a bit to see specialists but this time the GI doctor decided to do a endoscopy and colonoscopy, and see what they could find. After the procedure the doctor could not see anything to cause concern right away and told Tom and I that he would call with the biopsy results, so we waited to hear. We never got our hopes up because the fear of being disappointed, and having to face the reality of more things this kid would have to endure had been keeping us up at night, but the doctor called with the results and gave us some direction, Carson had a blood reaction to egg whites, so he has an internal reaction to eggs, but he is loosing white blood cells in his small intestine, and he can see that there is a problem. The thinking is Celiac Disease- although the tests usually come back negative when kids are young, but he shows signs that he is in the beginning stages of this disease. That is our direction for now, although his diarrhea is still worry some, we are changing diet and adapting to it. We are all going gluten free. Thankful for some direction, and hope this is it. Not officially knowing is always in my thoughts, but we will see what happens.
Again I thank all of you for the love you have shown us, not knowing has been quite the stress, and to not know what to do for your child, or how to help them breaks my heart, but because of the prayers, Tom and I found strength, and our baby is doing ok. We love you, I cannot tell you thank you enough!

While Carson was going through a blood draw and they were having a hard time getting a vein, he was screaming and I was bawling like a baby (not helping) a knock came at the door and balloons, and Ernie showed up from my mother and father, I cried like an even bigger baby because the timing could not have been better, and I still cry thinking about it. Carson would NOT let go of Ernie and that was a very tender moment. He still sleeps with Ernie. Thank you mom and dad.

He just did not feel very good at all.... but puffy from the fluid. Cute little Carson! He hates me taking his picture!

The hospital brought in a dog for therapy, Carson loved petting that dog. Cutest thing to watch, they would give him treats in his hands and he would feed him and let him lick his hands. It made everything better- dogs are mans best friend! Aunt Shannon was great taking are of him.. Love her!

Carson held his Ernie doll and watched cartoons! He loves that thing! Tender moments...

Tom holding Carson while they prepped him for his procedures. They gave him some drugs so he would not be so scared and that he would relax, and we laughed so hard while taking this picture because he was being a goofy kid. Love him.

He did so well after the procedure! They gave him a blanket and Tom got him a "big bird" stuffed animal, and Carson was scared of it, and would not have anything to do with it, we should have brought Ernie.

So blessed to have him in my life. Blessed to be his mother here on earth. I never left his side. Every poke, every tear, and everything he has had to endure, and as much as I was there to comfort him, he was staying tough for me. There is no stronger love then a mother has for her baby!

Wednesday, July 20, 2011

Father like SONS

Who is who? I really cannot believe it! They all look so much alike. I swore up and down that Kaden and Carson looked totally different but LOOK! And then look at TOM!

Tom's baby picture! One year old
Kaden's baby picture- One year old
Carson's baby picture- One year old
What do you think???