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try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/28/2005 1:13 AM (GMT -7)   
 I quess I really just need to vent.     ifeel so alone with this Epilepsy.We were going to start gonig to a supot group but the weather was bad and our car is good around town but any further it is nit a good idea. My husbands been really stressed about money which does not hep his Bipolar.He also has stones in his saliva glans which this week his neck and face are huge.They could do surgery but would rather not. So tomorrow I am calling the ENT he saw and see if he will call in the steroid package he gave him before for it. He is also a diabetic. So his plate is very full right now. I had a seizure tonight. It was pretty bad. I hurt my back and went ot the DR on Tues. He thinks it is from my seizures. I have just been having very short ones but they are increaseing everyday and tonight it was not so short. My family is just I don't know not there anymore. I quit calling my sisters and they have not called me. I emailed my one sister in Georgia and told her how much I missed my son that died. I also said alot of happy things too. I never heard back from her. My husband thinks I am be overly sensitive. Maybe. But god how I hate this monster in me that has totally changed my life and can happen with no warning. All the meds. can't seem to stop it. The Zonegran slowed it down then it came back like before. The increase in Zonegran slowed it down again and now it looks like it is coming back. When I have to have the Diastat I will call the EPI Clinic. I go for my MRI the first week in FEB. then to the EPI Clinic in March. I still have heard nothing onS.S.D. But the lawyer says it should be any time as he says that my bills keep adding up.I quess it allsums up to I'm worrid about my husband, can't understand my family and wish I would hear from S.S.D. I do know people have it far worse but right now I am just worried sad and frutrated.   Mary

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/28/2005 6:21 AM (GMT -7)   
Mary, I hate to see you have such frustration. You have alot on your plate and definately have great reasons to need to vent. You are very well liked here. I was reading a post of your over on another branch of this forum. We like you very much and you lend support to us when we need it. That is so great you are going to start and epilepsy group. I really wish I could do something like that or just attend a meeting. The closest EFA support group is almost in the city, and I am not driving out there. Your siblings seem to be strange and like we told you... their loss not yours. Of course these things are going to upset you. It is natural. But you are a good person and haven't done anything wrond here. I hope the EPI clinic keeps working with you so well. SSD takes a while from what I have heard and you are usually denied the first couple of times, but eventually it will go threw. Maybe it depends on where you live and the state rules. ANyhow have a ncie morning i have to get ready for work. Tracy
 


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/28/2005 7:46 AM (GMT -7)   
((Mary))) So many things piling up with your health and your husbands! Hoping the MRI goes well and that your back starts to fell better!! Hang in there....

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/29/2005 8:09 AM (GMT -7)   
Well today I found out that my sisters all took a trip tp Ohio to visit my niece. And quess what ? I was not even considered to go. To think we all were so close growing up and raiseing our kids. Boy this really hurts. I am pretty sure it is because of my seizures but now I not even sure about that. They all go to church every Sunday and then some. What great examples they make of Christians. I just feel so hurt. They could say we are going but your seizures are not very controlled we are not comfortable having you go out of state with us. At least they would be honest. That I could respect. It is only like a 3 hour trip. For being college educated they are very short when it comes to human kindness and common sense. I just feel so angry and hurt. It is so frutrating. I just had to vent. Mary

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 1/29/2005 8:42 AM (GMT -7)   
I am so sorry your sisters are leaving you out. It sure is not compassionate or showing you care. I am sure it is frustrating.

Is there any way to write a letter to your sisters about this? Maybe write it and wait a day and reread? Sometimes it helps to say it in a letter when they are not hearing.


((((Mary))))

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/29/2005 11:13 AM (GMT -7)   
 
I have tried writing to one sister. She totally ignored me. I know writng things down like in a letter can get a lot off your chest and then just rip it up. Oh sometimes it would be so nice to be young again and not care what people think and not try to figure out the why's of things. I do know I have a lot to be greatful for. A wonderful husband. His family is great. They are very supportive with each other and that includes me. My son who is what can I say I love him to pieces but he does have his on family. Two really best friends that I can count on one will say she does not want to be alone with me if I were to have a seizure but gosh a least she is honest. If we do go out for a short time she ask my husband if he thinks I will be ok . He tells her he can't promise but he can usually tell if I'm going to have a seizure and will tell her he thinks it will be ok.People just do not know how to deal with someone that has one and they are with them. But with my sisters I believe it is more then that. I feel they think if I come along and have a seizure their fun will be spoiled. That is what hurts. One day things will be different but until then I have to learn to grin and bare it. Mary
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