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I'm sick of things the dr & therapists feel is needed insurance denies. They denied Luke ST because his need does not fit their criteria. I have been through this with them a million times already. Frustrating.
Thanks Yvonne (Jaidynsmum) for my beautiful siggy!
I'm sick of therapy, I'm sick to pushing and pushing and not seeing progress, I'm sick of feeling like I have to be a therapist first and mom second. I'm sick of the guilt. I'm sick of watching other kids pass him up constantly.
Is it fair to say everything? LOL Not just SN-related?!
Therapies, evaluations, DOCTORS WHO WON'T LISTEN, having to ditch fun time because Milo needs treatments or it's gotten too late after doc appointments, feeling like I'm neglecting both kids because I'm a full-time nurse to Milo instead, money, bureaucracy/paperwork, being referred in a circle to have nothing done!, ignorant comments, people's unrealistic expectations of our family (even KNOWING what we have to do)...and perhaps most of all, BREATHING TREATMENTS. I think that Milo would agree with this...or being awakened by a needle every night.
Our house sounds like no fun. Sometimes, I feel that way. But we try. I think that we're doing the best we can! Ah, there's another-I'm tired of feeling like I can't just take a minute to be angry, upset, or overwhelmed. If you so much as let a corner of your mouth turn down about everything, 20 people are trying to tell you how lucky you are, chin up, etc. I'm VERY good at keeping a smile on my face, so if I want to say, "It sucks," just let it suck for a minute...then I'll be fine. LOL
Oh gosh, yes! I am sick of feeling like I'm not allowed to be upset sometimes... I get the same thing, people always leap to tell me how good I have it, how it could be worse, etc. I KNOW it could be worse, painfully so, but that doesn't make what we ARE going through any better.
ABSOLUTELY, I need to be angry sometimes, I'm sick of everyone telling me how "great" I am, or how they could never do it. I'm tired of having to smile constantly when all I want to do is scream. I'm tired of being happy because my kid can jump over a 2 inch beam. I'm tired of telling teachers that we will do whatever is necessary for both my boys to succeed. Most of all I am tired of people thinking that just because we dont have a surgery this month that everything is great. I'm tired of people forgetting that what I do is an everyday struggle, and mental breakdowns dont just happen in the OR right before their eyes roll back. Sometimes they happen at 2am, when no one else is there to see. when you have tried for the 5th time to relieve the pain that your baby feels, but no one can figure out.
wow, that got a little crazy. LOL. But i think we need more threads like this. we need to talk about feelings like this that make us uncomfortable, because we are not alone.
I am sick of needles, chemo, gloves, labs, blood, platelets, numbers, therapists and doctors, hospital rooms, masks, and restrictions.
I am sick and tired of giving Joey a shot every night or fighting him to keep a mask over his nose and mouth. I am so sick of living in fear of germs. I am fed up with needing 2 hour platelet transfusions and 3 hour blood transfusions at least 1x a week.
And scanxiety. I am so sick of scanxiety. Scans start approaching and I become a raging sea of emotions and no one is spared.
I'm sick of people saying- How is she doing? Is she crawling yet? Then when I say no, they say- "Oh she'll get there". I know they are trying to be nice and encouraging, but sometimes I just want someone to take her as she is instead of trying to say she will do things that we aren't sure she will do.
wow.. what a great thread. I am not a newbie to JM, just have not been on here in a while. I can relate to what all of you have listed, for the most part.
I am sick and tired of my child being DENIED for Medicaid (as a SECONDARY) b/c we "make too much money" which is a load of crap. I do not have a (paying) job, and we also pay child support for my 3 bonus kids. Our primary insurance only pays for X amount of visits for therapy, which we have already used. So basically, my child does not get therapy b/c my husband has a job?? I have tried every loop hole under the sun, to get him SSI, or Medicaid, and we get denied denied DENIED. I have been told to LIE, but that is a crying shame that I would have to go that route to get any assistance for my son. He is legally blind due to Albinism (but can see surprisingly well) and also has Autism. (on the low end of severe Autism) I love my son immensely and would not trade him for the world.... but I yearn for a day, where we can take him to do 'normal' things, and there not be meltdowns or any issues. I yearn for the day that my son will interact more w/ his older brother, and have somewhat of a typical brother relationship. I hate that my older son misses out on somethings b/c I cannot bring my younger son. (he is unaware that is the reason) I hate when I see a "normal" three year old, and all it does, is show me just how different my three yr old is... and how "un" normal he is. I try not to focus on the negative, but sometimes, you have to vent. This thread was great for that! I try and try to reassure myself that I am SO blessed, and things can always be worse, but it doesnt hurt to have a pity party every now and then. Us moms deserve that much.
Cheryl, I know what you mean about needing it as a secondary. I am getting ready to send a letter to my insurance about how disgusted I am that Luke's diagnosis only qualifies him for 20 PT & 20 OT visits IN HIS LIFE. He was denied ST even though he REALLY REALLY needs it. We have until March to figure something out & I am ready to vomit.
Excellent thread, BTW.
Thanks Yvonne (Jaidynsmum) for my beautiful siggy!
IDK why, but for whatever reason, they (insurance) approve less visits for ST, then PT, or OT. I dont understand why? I think we were approved for 60 visits for PT and OT.. and only 20 (for the year) for ST. Now Cash is in the PPCD program w/ the school district and gets ST there. (even though we would still be willing to take him to the outpatient facility as well)
I just think it is pathetic that if everyone quit their jobs, THEN they would qualify for assistance. In some states, (Ive been told) if the child is considered "disabled" they DO qualify for Medicaid as a secondary automatically.. but not in Texas. He will be able to recieve SSI but not until he turns 18. It really stinks b/c if he did get SSI, that would help pay for his therapy that my insurance will not cover!! I get very frustrated on this topic. lol
You guys are all scaring me here, LOL. Missouri has an amazing early intervention program, and I haven't been brave enough to look at what our coverage is once Danny turns 3. With luck, we'll be done with PT and OT by then, but ST is going to be a fact of life for a loooong time for us, and I can only hope that we have decent coverage or else we're hosed.
just dont stop fighting. and I am one of those who had to quit my job and live off of basically nothing in order to make sure Layne can get the medical help he needs. Its not fair for sure. We struggle to pay bills every month, but his health comes first so we do what we have to do
I'm sick of people staring and pointing, and having to explain why they're doing so, and see her reaction. I hate seeing her avoid places and activities she enjoys because people stare.
I hate the constant fears and being scared myself of reminding her of what used to happen or triggering a flashback. I hate people not understanding she's my daughter even though she's "not really mine".
Right now I am sick of the side effects of all of joeys meds.
It's bad enough that he has LCH, but the meds that that make it dormant also make him miserable.
Seriously... one med causes hair loss, nausea, and fatigue, and low counts. another causes constipation. And this is just his "primary treatment meds". Then you add in the shots that cause bone muscle and joint pain but are needed to get him producing cells again, and the other meds that cause other side effects but are needed to keep him comfy and it's just too much sometimes.
I am sick of being a germophobe. Seriously, there are only so many times I can freak out and put masks on everyone because someone in the same aisle at the store coughed!
And right now I am sick of not being able to give anything for teething, or having to take temps regularly and having times when I can't let Joey do anything that could cause him to fall because a fall could be dangerous for him.