Six Weeks to LIve... what do you do?

Here we are: the bottom line... Six weeks to live... Sounds crazy, huh? My life revolves around a medication that helps me be ME. It allows me to walk, live, participate in life. I have 3 treatments in the refrigerator. No refills. No doctor. I take my treatment about every 2 weeks. I have 6 weeks to live. At the end of that 6 weeks, I will still be here physically in this world, but my ability to live will have ended. This is a hard fact to swallow. This is REALITY. People say to me, " pray and everything will work out " yeah.. I pray, however, I am a realist and I know that unless I get into a Rheumy Dr. ASAP... Nothing will be OK in six weeks. My ability to live will not exist anymore. I will become solely dependent on those around me to take care of me and my babies. I am struggling to say the least. My pain on a level of 1 to 10 is about a 90. My mind is all over the place and I do not want to go back to that wheelchair. I won't... My struggle continues after seeing a Rheumy Dr. last week who contributes my joint pain to being FAT. I know that I need to lose MORE weight, but I am proud of the fact that I have lost an entire person. The removing of weight from ones joints does play an important role in feeling better. He wanted to entirely dismiss my medical condition because of weight. I left there feeling the lowest I have felt in a very long time. I am very active. I walk, I do yoga. Although I am not as active as I would like to be right now, it is due to my treatment failing... that being why I needed to see the Dr. for continued care. The biological meds that I have been taking, ie: treatment have enabled me to have my life back. Removing pain, swelling, and the mobility in my joints by shrinking the nodules in the joints much like chemo works with shrinking tumors. Same concept. Easiest way I can explain it. I will not go back to being that girl... I left her a long time ago and she is not welcomed here...

What you can not see in this picture is my legs are the sizes of tree trunks and propped up on two different stools because I could not bend my knees. I weighed about 369 lbs in this picture. I was still trying to be active and it was HELL. I have always pushed through until it was physically impossible which did happen... then I found Dr. Crayton. He was amazing, he listened to me, allowed me to be in charge of my health and participated in the solution. He cared. I am finding that those Dr.'s are few and far between... However, I will not settle. It is my LIFE we are discussing and trying to find a way allow me to LIVE it. The scary part is that I know what can happen in 6 weeks... You know.. the 6 six weeks I have to LIVE.

Some of you may be thinking... " wow, she is really over reacting on this one " Nope... I am not. The tragedy that I have lived through losing Jeff showed me how quickly life can change. I choose not to take the ability to live lightly... I get so sick of hearing people moan and groan about their lives... their spouses... their children... Did you ever stop and think about how much you HAVE.???? Today I do not take time for granted. Once it is spent, you can never ever get it back. Recently, Josh and I discussed him taking a job where he would be traveling about 2 weeks at a time. I will never tell him he can't do something... we do not operate that way. I only asked him to think of the time he will miss. The School functions he can not be at. The goodnights you can not get back. He made his own decision and we both firmly believe it is better to have little, and an abundance of time, than vice versa. I love that all our heartbeats are under one roof every night. It makes me smile... Even if it means I can not go buy the greatest and best new Coach bag, or have steak 3 days a week... I do not care. I am rich in a multitude of ways that have nothing to do with monetary items.

This guy... this guy right here... He amazes me in every way. He loves me even when I can't love myself. Here is what has changed for me because of Josh... I have learned how to " chill " out... so to speak... I spend the weekends in my jammies, unless we go out obviously. I never did that before, I used to get up and get dressed regardless. I have learned how to somewhat sit still and just let things be. I have learned how to let others HELP me... and he does it with love and genuine compassion. He makes me laugh and sometimes, that is all you can do... Laugh... The kids amaze me every day... It is quite chaotic at our house. We are usually running in several directions... getting one child something they need, or attending a school production for one or all of them at 2 different schools. It gets pretty interesting, but I love love love love love love it !!! I enjoy this time of year, the end of the school year when the kids have tons of things they are involved with and have practiced hard for their performances. They make me smile and move my soul like no other. So, you see? Having 6 weeks to live in unacceptable. I won't have it. I will conquer this... somehow/ someway. I hope you can take a minute an appreciate what you have in your world. I try every day to be appreciative of the things that I have and the people that support me. I am ready for Thunder Beach. We will be heading out of Friday and I can not wait... I am actually already their in spirit, just had the physically hang back to take of issues till Friday... ha ha ha The release will be so awesome and I get some quality one on one with my husband... That is the best part... The gravy if you will... Take care of you and yours. If you don't nobody else will... Much love to you all... Love the one you are with... Always say I love you... Never be unkind.. MWAH From our house in the boonies to yours... Love the gang of H's and Mr. and Mrs. Ptak... ( love that )