Life

[trevors_mom]

Hi everyone! Sometimes life is just so though! I was just wondering how everyone manages to keep their heads up. Some days I just get so over whelmed. I guess thats normal, but its hard. It seems everything just builds up, nursing, relationship, money just wondering if anyone has anything they can share about releaving stress. I mean I am happy but sometimes everything with Trevor and now myself, I have been diagnosed with a nueromuscluar disease about one month ago, Myasthenia Gravis, its treatable but not curable and I managing it alright now. I don't know just kind of overwhelming, you feel me? And Trevors dad well... we get along great and we have been together for 8 years but here lately we haven't been getting along to well, hes overwhelmed to but pretty much all he does is works, I take care of everything for Trevor, dont get me wrong he does his care but like doctors and all his medical needs I guess I would say. But since 7-16 I have been off work and then they terminated my because I was only there for 5 1/2 months and had to be their for 6 months for medical leave, anyway whatever, but now hes kind of nagging about when i'm going back to work, tell you the truth I am kind of scared. I am a nurses aid and medication assistance, so I have all these people in my hand if something happens one day then what... referring to going to lift someone and not being able to or dropping them, because a month ago I couldnt even lift Trevor. Oh boy life! Â* Well just venting alittle. Hope all is well with everyone!!!! Hope

[Jacob's Mom]

Hope, I sent you a private e-mail!

[Ann]

Hope, my heart goes out to you Â* Â*Our lives are such a series of extreme ups and downs. Â*I will tell you that the way I keep my head up is by talking about it all the time to whomever will listen. Â*After four years of this, I find that this board is one place that I love to come to vent and get comfort, as my family and friends are sick of hearing it. Â*I get comfort not just from answers to my posts, but by reading everyone's answers to other people's posts. Â*We are all such caring and loving people (pat ourselves on the back Â* ). Â*

I am also fortunate to be able to leave my house everyday, go to work and focus on something besides Jack and his issues (well, not everyday, but most days). Â*It helps me tremendously to be able to "get away". Â*I know that is not an option, or even a desire, for everyone on this Board, but it is my salvation.

It seems for some reason going into the weekends is always so depressing. Â*For me, it's a reminder of how much I can't do as a result of having Jack. Â*No taking the kids to the movies as a family, no hiring the neighborhood girl to babysit the kids so my husband and I can go out for the evening and on and on Â*. . .

Hang in there and come here and vent and cry as much as you need to. Â*We are here to listen and we care. Â*

[indiemum]

Hope,

I know what it can be like. I used to have these fleeting feelings from time to time........why me? why our family? I think over that last 16 months I have come to accept Indie and everything that goes along with her. I have said this before to others but in my heart I believe that Indie chose me to be her mummy before she was born and I try to look at it that way, of everyone she wanted me. I think what you are feeling is perfectly normal and I think you have to go through it once in a while as part of the grieving process to get to a place of feeling ok again. I think everyone who participates here is an amazing parent because they are willing to do the work it takes to do the best for thier wonderful children. You need to vent and I am glad we can help. Just remember that you are a great parent. Mike and I have never had problems before but since Indie has been born we have had some "issues" that we have had to resolve, it took time but we have done it succesfully. Just hang in there things will get better and one day all of the hard times will resolve and you will be able to reap all of the benefits that have become your grown son. I love to light some candles and take a bath (alone) it is a great stress reliever.

Kelly

[arielsmom]

Hope, I hear ya sister! You cope the best you can everyday. Some days I'm all about acceptence, other days I'm begging for mercy. It takes a huge toll on our relationships. I have also built other really amazing relationships (like these). I have no words of wisdom I'm afraid. I find talking and talking helps!
Best of wishes for you!
Karen

[Jimmysmom]

Hang in there Hope

I completely understand what you are going through. I stay at home and my husband works. Unfortunatly his salary is less then what I used to make so we have had to learn to live on less, and try to make do. It seems the strain on the relationship between my in my husband goes in cycles. Right now we are on the upside. Jimmy's medical problems started about three years ago ( gosh it seems longer) and two years ago I went to my doctor and asked for some Zoloft. It really helped and I'm one who hates to take pills. I took it for about three months and now I can tell when things seems to be closing in on me and so I start taking it again. He also suggested I start taking some vitamins. I was skeptic at first that they would make a difference but they seem to help.

Hang in there and I hope things will take an up turn for you.

Take care

Anne, mom to Jimmy (4) Infantile Axonal Neuropathy, trach, vent dependent, g-tube

[trevors_mom]

Thanks to all of you, it really helps knowing that their are people out their that know exactly what I'm going through and feeling. I don't think i'm depressed, I know i[m not, I love Trevor so much and I am so proud of him, I guess the feelings of alone are pretty overwhelming, Joe Trevors dad does help out (alittle) but he never wants to talk about doctors and proceedures or surgery's and that really hurts me because I am the one who decides all of that, which doesn't really bother me but it would be nice to discuss further medical treatments with him. Anyways thanks a lot, and now that I have found all of you it gives me a calmer feeling on things. Hope

[Jacob's Mom]

OMG, you guys...I know this was Hope's thread, but I have to just say one thing: Some people I know have always wanted me to get some type of medication to help with stress. I have always been against it thinking, "If I can't handle this without medication, then I don't need to be doing it." Not too logical, huh? I know lately there have been a lot of posts about taking antidepressant medication and I have really been considering it. I just think sometimes I get so stressed and feeling down that it might help me. Thank you guys for helping me see that it is not a bad thing. I love you all!!!

[cariaad]

Just wanted to chime in about meds..I take Paxil CR, which is technically for anxiety, but it helps me tremendously in maintaining a grip on my emoptional rollercoaster. Ive been off it for a month (can't afford it right now, $80/month) and Im really suffering for it. You can bet Im going to the pharmacy as soon as I get a check in! I dont think it's anything to be ashamed of...my life is so much more stressful than an "average" mom's. Remeber the old saying about children with special needs having parents with special needs! Deb

[Laurie]

Regarding stress, I have found that taking time to exercise really works for me. I used to run regularly before Evan was born, and basically dropped it for the whole first year of his life. Once he got a little more stable, I decided I was going to do ONE THING for me, and that was find time to go running or walking for 20 minutes, at least 3x per week. It really clears my head. It is complicated, because it means leaving the house, but my husband Dan is really supportive of this, so he will watch Evan while I go. I try to fit it in anywhere I can - I do work, so sometimes I run at work, and I am lucky to have night nursing, so sometimes I go really early in the AM. I know running and exercise isn't for everyone, but it has helped me survive some rough times my whole adult life.

Also, it helped me to decide to fix ONE THING at a time. I decided to focus on the running first, and that helped me take action, rather than trying to address all the stress issues at once. I am working on the rest bit by bit, just like we all are...

Best of luck and good wishes to you and your brave son.