Meds, Pain, Frustration, and more and MAJOR MAJOR VENTING

General
1

Friends,

Many of us carry more than one diagnosis related to this thing we call Chiari and right now I feel as if I will never get my old life back. I want to go hunting, fishing, target shoot, play sports , hiking swimming, work. I wan everything that I had. I want to enjoy my kids like I did before. Katrina really got all of it riding roller coasters horse back riding, hiking dancing and not all but many things that were affordable for us. I am ready to quit and I have already quit some things even against the objection, really vocal objections of my wife (who is right but I refuse to listen). THough I am not on some meds that some of us who suffer CM are but the ones I was taking did help, I still quit taking them; it has been about a week now.

I am ready to quit on my social security disability case. Just ready to quit on everything. I don't want to cope right now. I want it all to go away and never come back.

I feel like running away and never coming back

done

2

I forgot to add that it is even to the point where I am lashing out even at those who care for me the most and believe me at this time. When does it stop where is the light at the end of the tunnel. everything seems and appears to be so difficult what little I have written has taken me some time just because I have a har time typing and I know how to type. I know how to spell. just want to to go away

3

Michael-I feel like I am in much the same boat, psychologically. For me, it is my daughter who is fighting the battle of pain & lifelessness. She says many things as you did, like about getting her old life back & not having one now-not that I have much of one myself.

I am on disability myself for many issues of comorbidity, which I suspect we will eventually find is related to Chiari. The one thing that helped me get my disability, was focusing on my inability to function normally & to bring each & every health issue into that nonfunctioning. It is especially difficult when you don't have one single diagnosis. That's actually beside the point of my answering you. Just thought that might be helpful, because I wish someone would have told me to focus it in that direction.

So, back to my daughter-She has really struggled with finding pain meds that work. She wishes that she had something that might help, even if it were to help her sleep. So if you have something that helps, think of her & take them! We both keep struggling with the wanting to quit everything. It is so incredibly frustrating for me to keep trying & thinking & searching & listening & calling & anything else I can think of, when nothing seems to work. I swear the only thing that keeps me going, is that she is such an incredible little trooper. I am quite sure that if I were hurting as much as she, I would not be handling it.

4

Michael,

You & I are on the same page today. I truly feel your pain and agony. There is nothing I can say to make things better for you except......I have come to admire you . Yes, I said admire you.....because no matter how bad you feel or how frustrated you get you still love and worry more about your wife. You still tell us about your children and how you are starting a Chiari Group. That I have every intention of visiting when I am in Pittsburgh next. We all explode. I had a breakdown today myself. I hope you get some rest & things are always better in the morning. I am proud to call you friend. You have taught us all through your posting the Step by Step link of CM surgery. I have said this many times and I hope you understand why I am saying it.....You have to mourn your pre CM self and rise from the ashes a new Michael. You might not be able to do everything you used to but you can try & if it doesn't work out you find new interests. I don't think it is a good idea just to stop your medication. That can have negitive effects on your emotions. You have so many positives going for you. Please don't let the negatives take over & win. You are stronger than that!!!! We all care about you. Please let me know how you are doing tomorrow. I don't think I can drive to Butler , Pa., but if you need me to give you and your wife a break I will make it. That's how important you are to me.

I will say some mighty strong prayers tonight for you & your family & for Katie. We will not let CM win. Look how far we have come. Like Lori said "Us Charians Are Awfully Strong People."

5

Michael....

I hope you are doing ok today...Your post brought tears to my eyes and also vivid memories of the day, many of them...that I feel as you do.....

I love your honesty and all you give to our group..our family , here.....you cannot give up....WE NEED YOU!!!! Seriously....you have become a big part of this family.

It is an impossibility to ignore your pain and emotions during this rough patch...just know that we are here for you..this is where you can let it out and tell it like it is....Family is tough...they may mean well....but.......

Let us know how you are today....You are in my thoughts and prayers.

Lori

6

Michael, I can't really say anything better than what's already been said to you. But it's all true!! The feeling of helplessness and despair both makes us (yes, I said US) human and it also makes us appreciate the days that aren't so bad. Please continue to fight for yourself and the others you're helping. You're all worth it!!

Kellie

7

checking in....things r a little better. I'll read comments and posts later. I didn't do anything too too stupid, but some of the jury is still out on that train of thought. back later.

Mike

8

Mike,
Soooo glad your doing a little better! You have some great posts to read (especially fond of ChiariWife’s post). I had my surgery 8 years ago and it took 10 years to diagnose…I feel your anger and frustration. I finally had to tell myself to find a new “normal” and get back to life the best I can. I push through even when it’s tough because we can still find enjoyment in life, just in a different way then we maybe used to! I do it for myself and my husband. I know this affects him just as much as me. He makes me stay strong which makes me want to be stronger! It will happen for you to. You opening up and venting will help you get through this! Hang in there and use us!!
You are in my thoughts and prayers!
Monique

9

Glad to hear you are doing better. I know from my own experince when you have something medical that controls your life can be very hard to deal with. I have had crohns for 25 years. With two surgery. My latest one was just 5 months ageo. I only have headache and neck pain with my Chiari. My daughter has so much issue with her Chiari. As a parent it breaks my heart to have to watch her go through so much. It can be so frustrating someday. Stay strong and know that you are in my prayers. We are here to listen when you just need to vent. I beleive venting does help.

Susan

10

My Friends,

Thank you, thank you , thank you. I still don't understand how I mean so much to some of you or why; but it is not my time to understand because all of you accept me for who I am and for what I am. The good Lord brought me here and in his time he will let me understand. HE brought all of the people in this group not only to me but to each other and the funny thin is that we are scattered all over the globe and come from all walks of life, jobs, backgrounds, beliefs, up-bringing, and much much more. One of our common bonds is to help each other and all of you have me while I was in a very low point and a very bad mental and emotional place. Our other Common bond is this thing we call Chiari and how it wreaks havoc on us that have it and those of us who care for people who have it. I can not thank you enough for being there for me when I was down; thank you for all of the support and prayer and encouraging words.

I would like to share with you some personal history about myself especially being reflective and critical of myself during this time. As you know as most of us were with loving families, working, playing and doing what we wanted on our terms then CM came ruins our lives faster than a card house falls, but of course that is not what I wanted to share. I wish to share why after reflecting what caused such a meltdown. Being born in 1971, I was raised in a highly chauvinistic (SP) yet proper house. It including opening the door for ladies and the elderly, proper use of manners and respect, and old fashioned beliefs such as the man provides and takes care of his family no matter what he has to do, a man will not ever cry for crying is a sign of weakness and weak men are not real men in addition to not crying any display of emotion was wrong with the exception of celebrating positive, birthday, births of kids, weddings,etc. Also had the children will not speak unless spoken to and many more. But look what I underlined. This is what effects me the most even though I know it is not true it is these teaching that wreak the most havoc and I think explain what is making this low point so hard to get out of. hen I get the way I was feeling, I felt like a little kid again and that these believes were the truth and since I was unable that equaled me with failure. Now add to the fact that I was in the Marine Corps for 8 years and we need not go into how or what they think of failure, cause I am coming out of it and I think part of it is the belief of perseverance that they drill into our heads. Your kind words thoughts and prayers were the major factor into coming out. Talk about a the proverbial slippery slope dilemma. I felt the deck as well as life was stacked against me.

AS I stated that I quit taking my meds, and some of you read between what I didn't say of that I shut out my family and the people who care about me. I felt like I didn't need anybody or anything (for all of the wrong reasons). I also felt like that all of you have suffered and went through way much more than I have and that I didn't have the right to complain. I felt that you guys were untouchable because you have overcome so much and still accomplish way more than I will or I ever have.

After reading all the comments I started to cry myself and thank God for all of you and your prayers or who knows how this could have or would have turned out.

Now time for some positive thoughts and the first one I would like to share with all of you (because it is about you) has been on my mind all day and after reading the comments I know why.

Love is more than hearing the words I LOVE YOU. Love is given and found in ways I have yet to comprehend, but love is knowing that someone you have never met and probably will never meet (until we connect in our support group in the sky) wants the best for you and the people whom you care for. Love is the gentle hug you feel when no one is around and hearing "I've got you and it is OK. I've been there and I'll help you get through it." Love is the teddy bear I cried into last night why screaming inside "WHY ME? WHAT DID I DO TO DESERVE THIS?" and feeling the teddy bear hug back and say hush, sleep, there is the light. Hope is close and people need you. Love also ca be strict and demand more of us than we ask of our selves, when it does this though it pays back high dividends and rewards that never knew were there.

I believe in the love all of you showed came through last night and help me pull through and stopped me from doing something very stupid.

The final one is Family.

Family is a group of people who may or may not have met who are connected by a common bond. Without that bond family is nothing, it is but a single piece if string that breaks easily. With that common bond that single string become a thick rope that does not fail during a challenge or adversity. IT does not break even when great force is applied. This bond has been tested through the fiery ring, though charred it is still unbreakable.

You guys are my family which I love. Maybe one day we will meet, maybe we will, but know that there is a place in my heart for all of you.

11

Hi there....

Chiariwife said it best.....

Michael..you are part of MY FAMILY.......hang tough....things will get better...

Haas anyone ever told you that you are a great writer??? Well..YOU ARE!!!!!!!!

12

Thanks Lori.

I have tinkered with writing, but I never found an inspiration to continue it. When I took my creative writing class in college the teacher always told me I had great beginnings and great endings. I just have to find a way to connect them. When things settle down,I might try to write but who knows where it will go.

I am trying to hang on (Yoda is so mad mad me with saying that I'm tying) but as we know it is a difficult journey for all of us suffering and all of those who take care of us. I am pulling myself up slowly and I am going to contact the first NS who we saw and see what he says about the CINE MRI. I am trying to think happy thoughts and just for you I started a story as follows:

Feeling the morning mist rise from the lake and the sun reflecting the colorful pink and purple hues, I see my girls picking lavender and roses for the morning place setting. Coka, purring away and stealing most of my pillow raises his head as I rise. The smell of bacon, eggs and pancakes mixes sweetly with the flowers the girls are showing me as they come rushing through the back door greeting their mother and I with warm hugs and kisses. We all settle down at the able and know today is the day that something special is going to happen. Emma gazes at her mother knowing it is the first day of kindergarten and the excitement in her eyes shine. Katrina hugs me close and asks Daddy, can I drive the car today to school. She radiates the pride of a newly licensed driver eager to show off her 1960 VW Beetle that we restored over the past few summers. Chrissy slips her hand into mine and nods for me to allow the kids to do as they wish so we can ride the lake trail and have an early afternoon picnic.

I have just returned from a long and exhausting journey of which they are all proud of me for completing. Without knowing it, I have been asleep for the past 36 hours. Pain is considerably less annoying and I am feeling fine. I do not remember what happened to me, but I suspect the picnic will give me all the details I need.

That is as far as I got.

13

Michael......

You'd better be writing now!!!!!! KEEP GOING!!!!

There are many talented writers and artists on our sight...have you checked out Lisa W's blog???? Chiariwife is also a great writer...CHIARI HAS TALENT....next new show.....check your local listings!!!!

Peace and Prayer,

Lori

14

Michael, I also find your writing very inspirational and comforting. There are few people that can truly express the emotions people with lifelong ailments experience and you do it beautifully. I am of the majority that finds it very difficult. You wrote something I've been feeling very deeply and never expressed. "I also felt like that all of you have suffered and went through way much more than I have and that I didn't have the right to complain. I felt that you guys were untouchable because you have overcome so much and still accomplish way more than I will or I ever have." I've kept quiet about a lot of what I'm going through because I feel like I haven't gone through what others have. But you've inspired me! Thank you, Michael!!

Kellie