Hello All, My Will not so good!

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mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 2/5/2008 8:45 AM (GMT -7)   
Goodmorning All,
Hope someone can give me some insight on what to look for. Will is feeling better as far as the broncitis goes. He took his last antibiotics yesterday. I saw him Sunday evening and other than being tired he said he was fine but, I noticed him slurring his words and repeating himself several times I thought maybe it was because he was tired. Well, this morning I called to tell him what the attorntey had to say (what a joke! will vent about that later) anyways he stoped by to see me said he was very tired all the time and past 2 days his left ear has been hurting him, his lymph node on that side is pratruding out his neck and he's been confused and dizzy at times. He was slurring a little this morning ,told me he also has really bad headaches, I asked if he was having joint pains and he said that's everyday, but he's not going to let that keep him down. Of course I have call into Dr. but, am I overreacting or is the beginning I'm concerned that he's getting depressed and I don't know who he can talk to! Any advice on what to do would be greatly appreciated. You all are in our Thoughts and Prayers daily!
Huggs and Smooches!
Toni

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/5/2008 2:12 PM (GMT -7)   
Toni, I am so sorry that Will is still feeling so sick. Sometimes people can get a secondary infection because they are so run down from the primary infection. On top of that Will is already compromised because of his chronic illness. An antibiotic Rx'd for one health issue may not be beneficial for the secondary infection. I am not sure if he has an ear infection or sinus infection, or if it is something else all together. Has he been tested for mono? That too is a possibility. I don't think as a mother you are overeacting at all. I would be nervous too. It is our jobs as mothers to worry right? There are also some nasty viruses going around. If it's viral then you can only treat the symptoms, antibiotics won't help. Good luck and keep us posted.
Hugs, Shelly

mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 2/5/2008 3:21 PM (GMT -7)   
Hello Shelly,
Just want to say you are a blessing on this forum as is All I have met here. Thank You for taking the time to reply! I was reading a post from Butterfly3 about encephathy(oops) well could these be some of the signs I'm seeing in Will! I can see his attitude changing even with me, like very short temper and mouthy and he gets angry. Will, has NEVER acted like this, he's ALWAYS very polite and laid back. I know he's feeling like the whole world is against him and of course mommy can't fix this one. He has had hand tremors sence Christmas it comes and goes. I tell ya if I knew my son didn't drink, I would sware sometimes he talks and acts like he's drunk. I hope that you are right and it's just another infection. How long can he be like this?
 Told you I had to vent earlier, I went to a diability attorney yesterday, She basicly said Will has to be out of work for 6 months before they will concider him disabeled for SSI that we need to appeal it and ask to go before the board personally. There is no way Medicaid will pick him up right now, she said it wouldn't until after the liver transplant or could be around 2010 before he would get approved. She is one more person telling me to write our Govenor. Or move to a different County. How does everyone else do it?
Huggs and Smooches,
Toni

1Shelly1
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Date Joined Oct 2007
Total Posts : 502
   Posted 2/5/2008 5:47 PM (GMT -7)   

Toni, I just can't believe our gov't sometimes..................what a bunch of bull#@*!...Has Will had labs drawn lately? His Dr will know if it is encephalopathy or not. He will need to be seen anyway for the ear pain and swollen nodes. I'm sure he is absolutely tired of being "SICK" all the time. His attitude may be depression and frustration rearing it's ugly head. I can't say that I blame him but it is not productive. At this point he has to get thru the hard times one day at a time. Which I might add would be difficult for any adult let alone a young 21 year old. My heart just aches for him but we have to stay very strong and focused right now. If we give in to the "pity party" it becomes a vicious cycle for everyone. I am not trying to be harsh or critical in any way-just as realistic as I can be. God knows we all want him to be better and have no more sickness-------it is so hard being objective with our children isn't it? At least it is for me. We love them so very much and want everything to be OK but the reality is we can't fix everything. All we can do is the best we can.

 Hugs, Shelly


mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 2/5/2008 8:40 PM (GMT -7)   
Shelly,
You are so right! about it all!
 His last blood work was on Dec.7 when we went up on Jan.11, Dr. just looked at him for a few minutes said see you in April look good! Next day he was getting sick been that way until last week when Will called for me to take him to the ER, I knew he was bad .
 I got a reality check today. Will is #2 out of 4 children my youngest is 6 yrs. old and born on Will's b-day she's his mini-me anyways, school nurse calls me this morning she has a tummy ache can I come pick her up. She played me so good today that I just have to laugh about it. At first she put on a great act I felt really bad for her but when we pulled out of the school lot she said mom I'm not sick I just want some me and you time. She said I know you been working really hard to take care of Will, cause he is sick and all, so... I'm giving you a break so you can take care of me! Will called asked if I would pick stuff up at the store and take it to him. I told him that story and he laughed. He is scared and frustrated and she see's and hear's bits and pieces. One thing he did realize is mini-me is just like him and his actions and attitude good or bad reflects off to her. Wow, what a lesson to learn huh, I'm glad we played hookie today! He seemed more himself tonight. Yes, Our GOV'T is ASzbAKURDS!!!! But, with our  Will to Live and Will to Fight,  We Will never give up!!!Thanks Alot!
Huggs and Smooches.
Toni
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

1Shelly1
Veteran Member


Date Joined Oct 2007
Total Posts : 502
   Posted 2/6/2008 8:21 AM (GMT -7)   

Toni, I am so very happy that Will is feeling a little better right now. Your little girl sounds so cute and funny. It never ceases to amaze me that children are much smarter than we give them credit for. She knew intuitively what you needed-amazing. Kisses and hugs to you and yours.

 Shelly


Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 2/9/2008 8:34 AM (GMT -7)   
Toni, I am sorry that I haven't been here a lot lately. I just wanted you to know that my heart goes out to you and Will. It sounds like he is suffering from encephalopathy. Infections can bring on episodes of encephalopathy. Has he seen the doctor yet?

I am glad you got to have some fun time with your daughter.

Your still in my prayers.
Butterflythree
 
There is always hope!


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 2/10/2008 4:14 PM (GMT -7)   

I, too, am sorry I've not been able to be here lately, and my response will be short...but I just had to write.  I'm so sorry that Will is not doing well.  It does sound to me like encephalopathy.  Have him make a doctor appt. and have some blood work done.  Does he have a local doc, so you don't have to make that trip to Gainesville?

I believe SSI and Medicaid are tightening their budgets.  It is more difficult for a young person to get those benefits.  I do NOT believe he has to wait until after a transplant to get Medicaid, though...although he would need to stop working.  Is it possible for him to move back with you temporarily?  That might not be any better, though, as they would then consider the entire household's income.  It truly sucks.  If he has been turned down for SSI, he needs to wait 6 months to apply again...if it has gone to court.  If not, get a lawyer.  I don't recommend the ones who advertise on TV.  The truly good ones don't need to do that...they get their clients and rep through word of mouth.  Even so, don't expect him/her to go in there and fight for the client.  He just takes care of the paperwork.  Somehow, though, I think SS pays attention more if there's a lawyer involved, as they know then that the applicant is not going to just give up.  I can tell you that anyone who has liver disease is going to start feeling chronically exhausted at some point.  If you have any kind of counseling service in your area, that might help him.  There is one here that charges on a sliding scale.  My daughter went, and they only charged her $2 a visit.  She is currently going to Clay County Behavioral Clinic and getting counseling for free...though she has Medicaid and that might be paying for it.  Look in your Yellow Pages under Social Services.

 This is my month of tests and doctor appts., and I'm also helping the fellow in Canada who is writing a book.  That's time-consuming.  I got a surprise from him yesterday, though--a nice vase of flowers was delivered!  The card said it was in appreciation of all my time and effort.  Sweet.  :-)

My thoughts and prayers are with you both. 



mom's "will" to live
Regular Member


Date Joined Oct 2007
Total Posts : 111
   Posted 2/10/2008 6:20 PM (GMT -7)   

Hello All,

I have had a chance to talk to an attorney about this SSI and MEDICAID and the advice I recieved was to write our Govenor and whom ever else that will listen or move to another county as the disability guidelines are different elsewhere. We have to keep appealing but, Medicaid probably will not pick him up until 2010, however she did say when we appeal this time request to go in front of the board. SSI will not consider him disabled until post transplant and he does have to be out of work for atleast 6 months before he's approved He has not worked since Oct. 19th. I'm so confused, ANGRY,and to say the least very scared! Thanks to All of you here, the wonderful friends and the family support that we recieve! I don't know how I would make it without going totally insane! You are All in our Thoughts and Prayers daily. Oh and yes I have talked to Dr. and we have an apt. now for Feb.22nd. Will write more later.Again Thanks!

Huggs and Smooches,

Toni


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 2/11/2008 3:54 AM (GMT -7)   
 
     Tony just read your post now. Had'nt come across it before, so sorry to hear about Will. He is very young to be going through this horrible disease. I have criptogenic liver disease and the worst symptom I have is the encepalopathy. There are days when I wake up and feel detached from everthing. Forgetting what I'm doing etc.... and also realize I am slurring and repeating things without realizing it I often call siblings (long distance) more than once in a day because I forget what day it is. That's the time my husband tells me to take some more lactulose. They have no idea what I am dealing with , only the one closest to me knows. Thats my poor husband dealing with me.
       Of course I am alot older than your son.  my only son is 27 and no longer lives with us.  Don't want to burden him much with my problems, he has a 6 year old and a 3 year old. (my husband and I take care of the little one on work day s) well I should say I am there in body. My ammonia levels have come down from 168 a year ago to less than 14 ,but continue to have encepalopathy. Did file for SSD they asked me why I had'nt filed while I was still working since I had artrithis for such a long time and that too would have qualified. The letter I receive said I had been pre-approved solely on my medical history. Well"ll see.
       Hope you have a good outcome . Of course its like you said depends on the State you live in.  I will be keeping track of you and Will as long as I can. Keep posting. IT HELPS confused confused june confused confused
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