When it rains, it pours!

Well I know it has been a long time since I have updated everyone on life in the Patel household and how things are going with my illness. I do apologize, but we've been a bit insane around here. My symptoms are still progressing and changing and the pain does continue to get worse, but I am settling in to my "new" existence. I think the shock factor of how bad I felt has now regressed to the point of eery comfortablility. Our life is starting to resemble the olden days in the fact that I am back to taking care of the kids 4 days a week, which I love. It is extremely painful, but I feel that no matter what I do I will hurt so I might as well reconvene with life. I do have help 2 days a week because my cousin comes over while Chintan is at work and for the full shift too! Plus Chintan is home on Sundays, so we have our family day then. I realize that doing this against the doctors orders could very well put me and my fusion at risk, but I feel the benefits outweigh the risks. With pain disorders in general most people lose a lot of mobility, and I have, but if I stay moving while taking care of the kids it puts off my potential future living on four wheels.
So because of my little sabbatical from mommyhood, I was worried that Lydia was a bit behind developmentally. So a friend of mine mentioned having her evaluated by my county's department of education. They came out and did an assessment and determined that in most areas she's right on track, some areas she's ahead for her age, and unfortunately she is a little behind in a couple areas as well. They said that she scored very well during the assessment so that they didn't need to do a formal evaluation, but if I requested one that they would do it. Man, am I glad that I did it! They came today for day 1 of the evaluation to assess her motor, emotional, and social skills. Well they told me that Lydia presented a lot of red flags for autism. I was so broken hearted and instantly thought it was my fault, that if I hadn't gotten sick and was able to focus a lot of attention on her that she wouldn't have these problems. I started to cry and they assured me that autism is in the brain and it's something she's born with. But I swear when you become a mother you carry a lifetime pass to the guilt club. I am so bogged down with worry and fear that my illness has had a terrible impact on my children.
One of my house rules is that there is to be no anger, yelling, or cussing around the kids and as far as my depression and anxiety go I do my very best not to let the kids see it or feel it. I put on my "happy face" for the girls at all times and expect family to do the same. Chintan and I met with Dr. Toll (pain psychologist) and we discussed the kids at length along with a lot of our major stressers right now besides the obvious. It's all mainly financial and lack of sleep. But Dr. Toll was very proud of us for always putting the kids and their well-being first and foremost in our lives and for our positive, spiritual outlook. Although he reassured me that I was doing everything I still worry that it's not enough. On the days people are here to help, I try my best just to focus on me and resting and doing what I need to to feel good in those moments because it's not possible when I'm alone. But then I wonder if I'm being selfish.
Well now with the possibility of autism looming I really need to keep up the good work to continue with Lydia's positive advancement. I swear the girl is a little sponge right now and it makes everyday a new adventure. What is she going to learn? What words is she going to say?
I am sure much like when I was ill as a family we will all pull together and try to stay positive and live in the "now". Lydia is my whole family's "little angel". She's completely latched on to my mom, completely smitten with my brother in law, and really starting to attach to my sister.
She's having a blast getting to know my cousin that comes to take care of us and is starting to open up to her as well. I know our little "villiage" will come together for the spirit of this little girl and she will be the better for it. She is such a strong and bright girl and I know that she will be fine. Her and I are very similar people and we both are very strong-willed and stubborn. I know I don't except limitations at face value and I can tell she is the same way. So please pray for my little girl that she doesn't have autism and that there are just some areas we have to be more productive with.
I go see Dr. Hess (my pain specialist) on Thursday to go over all of my 13 test results! Yes the rheumotologist tested me for that many!! Her thoughts on everything is that it's either RSD or Lupus as well as a severe case of Fibromyalgia. Dr. Toll gave me a list of things to talk to him about that are in his eyes the symptoms of most importance. Those things are lack of sleep (I get approximately 2 or 3 hours a night), restless legs syndrome, pain levels, swelling in my joints and legs, and continuous weight loss. I lost another 10 lbs in 2 weeks, so under normal circumstances, I'd be like "yeah"!!!! Another 50 lbs or so until my goal weight, lol!! No not that much, at that point I'd be a rail, and I like having a bit of junk in my trunk. Or in my case a little jelly in my roll :) I don't get to go see the psychiatrist until June and he's the one who needs to put me on anti-depressants. I am looking forward to see if those help calm down my worries and stress. I know that there are some that say I think about my illness too much and over-analyze and guess-timate the future. But I really think that that is a normal reaction to being sick and in pain and definitely not in "the know". I feel like sometimes because I am so sick sometimes my feelings and thoughts get put on the back burner because it's all just too much. And at that point all I feel is rejection. Being made to feel like a first class reject on top of everything else going on inside my head is just not working for me right now, lol. Obviously, right? So here I go, I am going to keep trekking on in this very important and hopefully informative week. Prayers needed for all of us, please. We all need the strength to get through this exceedingly stressful time. I hope this blog finds you all well. I will try my best to write more often especially with all of the new possible developments to come!!

Hugs and Kisses,
Chrissie :)