Hello! Health and family update

Well, sorry I haven't posted in a while. The summer heat is about to kill me. In fact, my neuro's office called last week with a friendly reminder to stay out of the heat!! Heat is Multiple Sclerosis's brutal enemy!! Anyway, my weight loss is still the same - weighing in at 187. I think I'm about where I will end up since I need steroids (long term) now. That's okay. BTW, you HAVE to check out this site: www.plasticsurgery.org and look at the "photo gallery" and then check out the "bariatric body reconstruction." It will BLOW YOU AWAY!!!!!!!!!! I had my appt with the plastic surgeon for July 18th, but then I lost my health insurance (YIKES!!). . so I guess I"ll have to reschedule. Bummer. Like Leslie Lee just posted, I'm having the same situation with my fibro. The pain is getting worse than better. But I do know that it would be so much worse if I hadn't lost all the weight. My rheumatologist is still fantastic!! And he totally supports my SS disability application. He feels I'll be approved. My rheumatoid arthritis has really screwed up my right arm, especially the elbow and wrist. I'm having to learn how to do everything left handed - WHAT a challenge!! Try it - use your opposite hand and see how cumbersome it is! Oh, and I finally have some answers for my special needs child. Avery is two (almost three) years old, and we've had lots of behavior problems with her. Anyway, after months of testing, she's been diagnosed with 1. disruptive behavior disorder 2. severe organic ADHD 3. expressive/receptive language delay and 4. a sensory processing disorder. Oh, the child study center did say that her disabilities are most likely due to all the negative antibodies in my blood (RA, MA, fibro, and lupus), That does bother me, but it also means I shouldn't have any more children. Although she has autistic tendencies, the child study center did not feel that she is autistic. I'm very happy! She is SUCH a handful. She attends a headstart for children with disabilities (which at first was a major source of guilt for me - since I stay at home. But I'm fine with it now. I spend several hours a week volunteering in her classroom. It's a great experience for both of us!) Anyway, if anyone knows of any resources for health insurance, please let me know!! I am a little FREAKED out about losing my health insurance. There is a chance I can go COBRA, but it's $500 a month. My state disability check is only $1000 or so. . it would be a rough stretch. Oh, well. . . things will work out - they always do. I have faith. I found a few medicine programs, and I can get most of my medicine for free now. That is a GREAT thing. And my rheumie agreed to let me pay him out for his visits. My medicine copays are $300 a month, and getting the medicine for free would be amazing!! So the only big loss is the abdominoplasty. That DOES make me sad, but oh, well. If it's meant to be, it will happen. Anyway, that's about it for me. Still hanging in there, as best we can.

Leslie Does your state not have medical care with disability?Every person I know on disability also gets there states medical care. I'm not trying to be nosy but this may be something to look into. Also if you are the getting disability now that your daughter has these issues she will qualify also. Hope this helps. Good luck. Tina

I didn't think your question was nosy at all! At this point, I am receiving "state" disability, as I was a state employee prior to becoming disabled. In Oklahoma, the only state sponsored medical assistance is for individuals receiving social security disability. Once my application for SSD gets approved, then I'd be eligible for state medical. . . but until then, there are no programs for me. I've looked at other states, and I think that almost every other state has medical for disabled people while awaiting SSD. . but not Oklahoma. SUCKS!!! Once I start feeling better, I am going to go on a mass campaign to contact legislators and implore them to pass legislation to help disabled people in my situation.

I agree Leslie that seems crazy. I just don't understand why all states should be so different. It just doesn't make sense to me. Even education. Why should our country be teaching children in different states different ways. Take the highest ranked in education and teach all our children that way. ANyway good luck and keep us posted. Tina

I know - the differences between states astound me. Here in OK, it's illegal to get a tatoo! Gambling is also illegal (although it can be done on tribal lands). Go figure. We have a horrible state when it comes to taking care of the needy. Oklahoma is just in this horrid mindset that if you're poor, you "choose" to be poor b/c you're too lazy to work. I cannot even tell you the number of people who say crap like "well, if they (families - parents and children) get hungry enough, they'll work." There is no sympathy for illness or disability. it's very, very tragic. I sometimes think God gave me these disabilities for me to lobby for CHANGE in our system here in Oklahoma. We need change, desperately. Anyway. . . . sorry to ramble! LOL Obviously, this is a hot topic with me.

HELLO FELLOW LESLIE: I am sorry to hear that you are struggling so much. I am glad to hear that you got some answers about your daughter. Before having to quit work, I was a Developmental Interventionist for kids birth to three. (I also had older kids on my caseload) AND my son has learning disabilities from catastrophic epilepsy that he had at age 4. I am also in a similar situation with COBRA. Its SOOOOO expensive. I think my check just bounced which means I may be UNINSURED and since Im UNINSURABLE now for a variety of health reasons, I may be up the creek. I havent heard about my SS Disability in months. Ive got to check on it. I hope to get a hearing this fall. I am concerned since I had to give up the walker, that I may not get approved. Fibro is still tough but the problems are more Bipolar related now. Good Luck. Still waiting on that email! LESLIE LEE 312/174/160-170?

Did you not get the email??? I sent it the same day I responded to your post. How WEIRD! I was wondering why I had never heard back. Okay, I'll try again! LOL

Leslie, you are in my thoughts and prayers!! -Katie

thanks Katie! I haven't seen you post very much lately. Are you doing okay?? Love and Hugs, Les

Hey Girl, I am good. I have just been mad busy. We are in the middle of a move. Staying with parents until house is ready, and have been out of town some..away from computers... so it goes. Blessed to be busy. I will do better!! Take Care -Katie