Tuesday, January 4, 2011

History Interrupted

I cried today....really cried today. It was just one of those days that you can't help but cry. I am sure you know the ones I am talking about, they start off bad and then just keep getting worse. I couldn't even hide it, I cried right in front of the kids, luckily they didn't seem to be phased at all, but normally I would at least try to cry in private, today I couldn't help myselft however.

Sorry to interrupt Reagan's medical history, but I think if I got into more of that right now I would just start crying all over again, so I will just use today to vent and hopefully pick up with the history again tomorrow.

Todays complaints/questions:

1) Why do complete strangers think it is ok to step in and give you parenting advice when you are in no way shape or form asking for it and when they have no idea what is going on in your life?
2) Who thinks that a 2 year old knows how to write?
3) How come you have to pay almost $70 to get a copy of your children's medical records? Shouldn't those just be given to you? Haven't you already paid these people enough money already?
4) How come when you are in a bad mood and things aren't going right you children can sense that and totally play off it and act horribally?
5) How come bills always come in at least 3 at a time, there should be some sort of law that only allows you to get one bill a day in the mail
6) Why is dealing with insurance companies and Dr's so difficult? If I was paid for all of the time it took me to call/fight/question everything I would be a millionaire

I think that is it for now. Sorry again to just vent but that is what I needed today. Hopefully tomorrow will be a better day and I will pick up where I left off.

Monday, January 3, 2011

Reagan's History Part 1

Happy New Year everyone! Sorry I have been so bad about my postings, but one of my New Years Resolutions is to make the time for this so hopefully I will be a lot better about it. I am going to try to be as accurate as possible about this one, but I must admit I am not great with details about the beginning because I never thought any of it would lead us down this path, but here goes nothing:

1) March 2008 - Reagan was born in TX a happy, healthy 8lb 10oz baby girl, our first

2) Very few Dr's apts except the regular check ups and shots all babies get, she was so healthy

3) April 2010 - Reagan's 2 year well check with the pediatrition, all, ok, he said she looked very healthy (in my head I remember thinking of course she is, this kid is never sick, not even a cold or anything, she is like the perfect child)

4) Beginning of May 2010 - Reagan starts to limp when she is tired or being silly, I don't think much about it as she doesn't complain of any pain, there is no swelling and nothing is red, I am thinking that she is just goofing around or something

5) Middle of May 2010 - Reagan is still limping, I am still not too worried about it, but my Mother-in-law starts to plant a little concern in my head after telling me a few of the things she thinks could cause something like that (I will be eternally grateful for her for that)

6) May 15th 2010 - We go to one of Reagan's friend's birthday parties at a bouncy house place. Reagan is having a great time running and jumping and full of energy like always, she is just limping while she does it

7) May 19th 2010 - I finally break down and decide to take Reagan to the Dr to look at her leg. Our pediatrition's office told us that a clinic close to us has an X-ray machine and to take her there. So we go there and of course they don't have one, but we see the Dr there and she watches Reagan walk and says hum, she is definitly liping but didn't know why. She had no swelling in the legs, no redness, no pain to the touch, she was just limping. So they sent us over to the hospital to run some bloodwork (testing for anything abnormal, they said cancer, artiritis, etc) and take X-rays. So we go do that then leave quickly as my brother was in town celebrating his 30th birthday so we ran to dinner to be with him and the family. While there we receive a call from the clinic saying everything looks great with her bloodwork and her X-rays so we should take her back to our pediatrition as soon as possible so he could see if he had any other ideas. About 30 mins after that we received a call from the hospital asking for us to come back and do more X-rays. So Reagan and I left dinner and went back to take more X-rays. They took about 5 more and then about 4 people walked into our X-Ray room, the first thought that went through my head was oh no, they are going to take her from me for some reason. No one did that but they said that she had a broken left tibia and that I needed to call a pediatric orthopedic surgeon and get her casted. I was absolutely shocked to hear this news, after all she had been running around limping for almost 2 weeks, not complaining of any pain or changing the way she did anything. Despite my speculation on the diagnosis, by this time I was feeling horrible for letting my daughter run around on her "broken leg" for 2 weeks so I was willing to do anything to make her better. Looking back, I think part of it was also a relief hearing that it was a broken leg and nothing worse like arthritis or cancer like they were also testing for. Overall the broken leg diagnosis was not horrible news, something we could for sure deal with, and something that could be "fixed" and not cause any long term effects for her.

I sometimes beat myself up for just accepting that now. That put us about 4-6 weeks back from finding the correct diagnosis, I guess I was just hopeful at that point, and couldn't believe, or didn't want to believe that something else, something much more detrimental than a broken leg was actually going on with her. I remember going home that night and telling my family it is a broken leg. I had the X-rays in my hand and we all looked at them and couldn't see anything. I know that I am not a Dr, but I did go to school, I thought that I would be able to see from an X-ray when something was broken. My family also couldn't believe it because she was running around and all of a sudden we are telling her to stop until we can get a cast on her leg. We were all wondering what was going on, and as I will speak more about later I did question the fracture, but more on that tomorrow.

My take away from this beginning of this process should have been to question everything and don't blow any abnormal behavior off, but who am I to question Dr's who do things like this for a living? I am just her Mom, what do I know? But I have found out over the past few months that I know the most about her and my gut feelings have usually been right. As parents we are the ones who know our kids and interact with them on a daily basis, we know them best. A smart Dr will ask the parents about the childs behavior, and if they really listen they will learn a lot from that. I know now that I must never be afraid to question anything and stick up for what I think, because in the end it is going to be Reagan that benefits, even if that makes me look bad in the process it is TOTALLY worth it!

Tomorrow I will continue our journey, sorry to break this up but WAY too much information to write down all at once!

Tuesday, December 14, 2010

About Me

Hi Everyone, sorry it has taken me so long to post something new, life has been hectic as usual. Just wanted to say some quick facts about me then I will got into more about Reagan's history in a later post.

1) I am not a writer, in fact I hate to write so I apologize in advance.
2) Spelling and grammar were my two worse subjects in school.
3) I don't usually talk about my feelings so this is new to me and I will do the best I can.

Those are the 3 most important things to remember when reading this blog. I will try to make it as entertaining and educational as possible in hopes to help others out there going through similar trials and tribulations. Stay posted for information on JRA and Reagan's history with it and our daily struggles living with it.

Tuesday, December 7, 2010


I have not cried today...two days in a row must be some sort of new record for me, at least recently. Part of me feels bad about not crying but then on days I do cry I start to think, why am I the one crying I am not the one in pain, it is Reagan who feels the pain of this disease. Then after I beat myself up for crying I try reasoning with myself which goes something like this...Ok Amber, you are right she is the one that feels the physical pain of this disease but you feel the mental pain. You understand the long term effects this can have on her life and future and she can't comprehend that. That reasoning usually helps for awhile and I continue to cry to myself either while the kids are napping or at night after everyone else has gone to bed. While crying I wonder is there anyone else who feels the way I do right now? Does anyone else go through this song and dance? What are those people doing to feel better? Do they feel guilty like I do?

Long story short I don't know the answers to any of those questions. I try to pull what little knowledge I have from an undergraduate degree in Psychology to help out, but somehow what I read in a textbook doesn't transfer over to real life so easily. So I usually end up praying, praying for healing for my baby and for strength to get through this time and get her to that point. Strength for making the right decisions about what treatments to do or what doctors to see, but mostly for strength to get up every morning and try to be the best wife and mother possible. I take things day by day now because that is how this disease forces us to live.

Part of me wonders if God presented us with this challenge in part to help me slow down. I don't know what all of the reasons are, and maybe I never will, but I have decided, through this blog and hopefully other outlets in the future, that it is my mission to fight this disease and to be a shoulder to cry on for any parents or children dealing with JRA.

I will leave you today with this time old saying, which I am starting to think might have some truth to it,...IT IS OK TO CRY!!!! So my friends cry if you need to and know that you are not alone in doing so!

Monday, December 6, 2010

Welcome to my blog

I have not cried today...had you met me a few months ago I could not have said that. This is a long story (not so long time frame wise, but it sure seems like it) so I will start at the beginning. My name is Amber, wife to a wonderful husband Jeff, and mother to two beautiful, perfect children, Reagan who is two and a half and Brady who is 18 months. Prior to May 2010 our life was perfect, we were sailing along without a care in the world oblivious to any and all problems that might be thrown our way. Then comes May 2010 and my beautiful, perfect energetic daughter Reagan starts to limp. This was nothing that I was too concerned about as she didn't really change her activity level or mood. After a couple of weeks when it didn't go away we decided we should have it looked at, and that was the beginning. I would say the beginning of the end, but we don't know if we ever will reach the end of this journey. Long story short, almost 2 months later, (I will go into more detail later) we have ended up with the diagnosis of Juvenile Rheumatoid Arthritis. I am starting this blog not only for therapy for myselt, but also in hopes that God will find a way to get it to the other Moms and Parents out there going through this same thing who need support just like we do. One day my hope is to somehow change this disease and the precious children who like Reagan suffer with it everyday.