The good, bad, and ugly

doing this the easy way with bukkeets and numbers. way to hard to do it the other way and pain and other things are preventing it so lets go:

The good~

  1. Things are back to a near normal state with Chrissy and I. With other individual, we are talking but still tense with easing in my opinion
  2. I have gotten mor freedom, and the ladies have realized I ask for help when needed or admit I can not do something
  3. 35 weeks on Friday
  4. Katrina's 504 plan for her epilepsy completed at the school this morning ~ went very well
  5. got new stroller and car seat for baby...its cute and safe

The Bad ~

  1. took PCP's migraine cocktail (homemade torodol) bad results twitching/tremors/involuntary spasms started on left then moved to right
  2. migraines and pressure headachjes are back with a royal venegence. they are kicking my but bad. feeling very depressed about this.
  3. I am feeling down after surgery due to not noticing change. I know it takes time but the only change I really notice is that the numbness takes longer to start (more in ugly)
  4. Baby test tonight ~ baby was unresponsive and low heart rate, did improve ~ irrated OB was there but did not do a Frickin frackin thing
  5. feel as if I can not handle face to face support group
  6. Can not get to old pcp for about 2 weeks and new PCP for about 10 days to discuss above and below issues

The Ugly~ some is very brutal and negative just so you know

  1. not due to any outside stressors or what people are saying; Having self esteem, self worth, and self confidence issues. Feel like I have put up a front for too long and nothing is right. I am looking into counseling, that should help.
  2. numbness in legs causing more falls/numbness is more severe
  3. tremors/twitching/spasms in legs getting worse sometimes feel paralyzed on left side, mostly night time and left leg
  4. more visual spots and floaters, mostly night time
  5. not sure of cause whether cm/sm/POTS or all conbined but been having bad chest pains as well see cardiologist next monthecho on 8th of Sept.
  6. the usual cm/sm experience friends and family doubting that I ever had anything wrong with me and since I have had surgery, I shoould be all better. have even been told that I should not be receiving SSDI (hasn't started yet but slowly receiving information and paperwork...should begin soon) because that is for people who are really disabled.....talk about feeling rejected.

and in all the above catergories I wanted to put 6 or 7 weeks (not sure) post op. It oddly does not make me feel better saying that I am post op. It seems that when stress is gone at home I feel as if I am falling apart but the stress is present (which I really do not want) I feel as if I am superman.

I have reflected back about two weeks and have not done anything to over exert my physical limits; mental and emotional probably.

Finally doc B is finished with me for the most part. As it was said he could not say that the surgery would not make me worse or show significant improvement, Also as far as he is concerned I am not having problems realted to CM as tht was fixed and I should be able to return to work......

Very confused, depressed, and unsure....

night all and for those of you who are in the path of Issac please listen to authorities, be safe , and god bless

I am on a spasmatic laptop. My desktop finally gave out. I have tried to leave you a message 8 or 9 times and this laptop jumps pages. Please know I am thinking about you & praying for you. wish I could post more........This has helped me a lot..........

http://www.chiarisupport.org/photo/judge?context=user

I know I am asking a dumb question here, but why are doctors such idiots. Just got home from hospital with Chrissy. She was bleeding and we went to the OB floor. Doc did not come in to 8 this morning, I understand situations arise, but don't they teach priority of cases in doctor school. I mean 34 weeks with bleeding and no show until 8 AM. Better yet can not tell us what caused the bleeding, just baby is fine good heart beat, meanwhile mommy and daddy want some more answers and less smart ass nurses saying why are you here cause you are not bleeding now...GRRR
I think I have found my new calling in life, I will be the all in on doctor -a PCP, NL, NS, Cardiologist, OB,Radioloogist, and a NURSE (BSRN for starters) and anything else to help with CM?SM + related conditions and OB for the new little lives of this world.

Then again what fun would the world be with out stupid people, even though as CM/SM sufferers/caretakers/parents have more than our fair share of stupid people trying to help us.

Beeba

I could not do the lunch idea as it would Chrissy home by herself with kids and that would not be good, also she would turn down a lunch, no matter where it was or when. Trust me, I have learned this families habits after 11 years and knowing some of the things I do makes me cringe but I love my wife that is the best of the best. As for the list, I have made them before but was never able to keep up with them, I like to do things on spur of the moment and I usually get all tasks done in time allowed. Those also were the major stressors and like everyone else I have the stressors of bills, home, etc...

I was taught to carry the weight of the family world, and unfortunately it was reinforced by Uncle Sam's Misguided Children (if you don't get it it is USMC). I really did want to go your lunch route but trust me buying food at the dollar store will still cause an arguement and that is what we were trying to avoid.

Oh yea it is not that bad to agree with a man is it, I mean really, it could be worse you could agree with a child (like Emma) wait that might be better since she is a girl. LOL anyhow.

Tracy hopefully that laptop cooperates with you, I have one too and when (if) I get it running I am giving it to the kids. IT is older than Katrina but hey if it works, it works. Kids do not ned the best of everything right

Emmaline, I have readjusted timeframs, but I am keeping goals in sight like you are it just seems these setbacks keep coming and the light at the end of the tunnel gets dimmer and dimmer. Right now all I see is a very faint glow, but I know it is there, just far far away