how do you personal come to accept your condition without anger and depression?
how do you personal come to accept your condition without anger and depression?
Personally I had a VERY hard time accepting my CM diagnosis. I started going to therapy and found that to be quite helpful. The hardest part for me was being able to trust my N and NS, because of the REALLY BAD experience I had with my 1st N that I had seen. To make a long story short he didn't tell me I had CM based on his "personal and professional opinion" that it wasn't the cause of my symptoms!! Still angers me and caused me to have some real trust issues. I now go to Therapy and am still working on things, but my Therapist helped me to see things from a different perspective. She said it was like grieving. You will first go through denial, then anger, then acceptance and so on. So, I guess to answer your question...NO you can't come to accept CM or any other life changing diagnosis without going through anger or depression. And rightfully so!! Basically you ARE grieving. Grieving the loss of your old life and the old you and having to come to terms that you will have to make changes, like them or not, to continue with the new lifestyle you will have to live when you are a person living with Chiari. So be angry, sad, depressed, whatever, but just know that there IS a LIFE with Chiari. It is what YOU make of it and you can still be whatever you want to be, but you have to tweak the "plan" and take it slow. I hope this helps you through and know there are a lot of great people here to turn to when you feel you just can't anymore. We all have those bad days and if it weren't for this site I don't think I could of gotten through my decompression surgery or have even done it in the first place. This place is a God Sent and the people will become your friends and family, because they all have been in your shoes.
Good Luck and Prayers,
thanks to you all for your replies..really means to wrld to me.....seems since i got this new dx of RSD and the steriod 's the doc put me on....just trying to accept life on lifes terms...knowing God and you all are with me.
God Bless each and every one of you!!!!XOXOXOXO
thank you carla.....everthing passes..Praise God...
I love and miss ya,
1st off ...hats off to you for being in recovery from your addiction...that is a huge thing!!!!!!
I think it is a one day at a time with chiari too???for me, anyway...
I lived most of my life without knowing what was wrong and, maybe that was a blessing. I wasn't diagnosed until Dec 2007 after having already raised my children and retiring. Other than the frusration of not knowing what caused symptoms that I had over the years, I didn't have that "Chiari" diagnosis hanging over my head. Immediately after I was diagnosed with the Chiari, they found my brain aneurysm and that took the focus away from Chiari. I then had three aneurysm surgeries to correct one aneurysm and broke my foot (which took five and a half months to heal), and after the third aneurysm surgery had a police car ram into my car and total it (with me in it). Then it was on to the Chiari/basilar invagination surgery. So......not too much time in there to think about it. I know I still have Chiari, but I do have a lot of improvements since the surgery. Unlike some of you, I was never really healthy my whole life because of Rheumatic Fever, so I didn't have to grieve giving up a life that included a lot of physical activity. Maybe that made it easier for me. In spite of all that, I still managed to have a good life; just different than I might have wanted or imagined it to be. I've had a very successful career and a family....you can't get much better than that. So I haven't really struggled with accepting that it is what it is with Chiari, so I know I'm blessed in that regard.
I did have a situation in my life unrelated to Chiari where I had to go through all the stages of learning to accept a situation that I couldn't change. It's very personal so won't go into it here. I went through all the stages where I grieved over it, wanted to fix it, finally realized I couldn't, and finally came to acceptance. So, I know it's not always an easy process; it's tough. You do have to work through all of the processes to finally get to the acceptance part of it. I'm praying for all of you that you are able to work through the losses of health and sometimes personal relationships associated with Chiari and quickly come out on the other end of this process. It's a personal journey which IS helped by support of others, so it's good that everyone can talk about anything on here and get support from those who give so much of their time to help other people cope. Just sharing knowledge and knowing that others care helps take away the fear.
thanks for all your replies...crystal..you are something!!!!look how good you are doing!!!!! Thank God.
blessings to you and your family.
Thank you all so much! I am here for you and I just want to make sure you all know that. I am so lucky to have the same from all of you as well. Love you all my Chiari Family.
Take Care and God Bless,
Everyone thinks differently and that o.k. It doesn't necessarily mean that anyone is right or wrong; just means that everyone sees things within their own parameters. I personally don't think that encouraging acceptance and hope is minimizing what others are experiencing. For me, too, when I was diagnosed with Chiari and a very large brain aneurysm at the same time, I was afraid I was going to die. After all I had never heard of Chiari and never heard of anyone having an aneurysm unless I heard in the same sentence that they had died. When I expressed that fear to my husband, his response was "Yeah, you might die ; but you might anyway without having Chiari or the aneurysm". And you know what, I knew he was right. But that wasn't really what I was looking for at the time. Honesty is always a good practice, but I was looking for "Honey, it's going to be o.k.", at least for a minute So, I only spent a few minutes feeling sorry for myself; it was a very short pity party and I haven't had one since. And, it wasn't as easy as I sometimes make it sound, But, for my peace of mind, just I had to finally accept being an insulin dependent diabetic and taking shots every day, I had to accept the Chiari/basilar invagintion for what it is and then set out to learn as much as I could and determine what I could to to try and make it better. Acceptance doesn't mean that I never complain about having it or wishing it would go away on a bad day. But I can't really make that happen, I can only control my reaction to it. So I work at it - That may not work for everyone else and that doesn't mean that I judge others whose journey is different or who have different coping skills. As I've said many times on here, all of this is a personal journey (even within your own family) and we each deal with it in a way that we feel comfortable with, in our own way and our own parameters. I'm just a person who has chosen the path of trying to be as positive and hopeful as I can. I can't help but encourage others to see the positive in everything as well. I know it's not always easy; it's a choice I sometimes have to make daily. After I think about the fact that, in spite of all the problems I have, I can see, hear, have both arms and legs (even though they hurt they work), and talk.....I feel so blessed to have survived so many things in my life and still have some working parts, it becomes harder for me to see life in much of a negative light. I hope that nobody thinks that presenting things from a positive perspective diminishes anything that anyone else is experiencing or the way they are dealing with it; but it has worked for me emotionally and physically to just let go and turn everything over to God and trust him to handle it for me....once I was able to do that, I felt like a huge burden was lifted off my shoulders and I felt so much better physically and mentally. I'm hoping and praying that everyone else can have that same peace of mind. I know, I know......it sounds kind of heavy!!
I think the terms Zipperhead is a tongue and cheek type thing....i don't think anyone would mean to offend anyone by using that....Theres a T-Shirt that says.."TOO MUCH BRAIN TO CONTAIN"..some may find that insensitive or offensive...myself, personally, i think it's funny.
You have a great out look on life it seems...that is terrific. I agree with you on the mind, body and spirit. If I didn't have a relationship with Jesus, I don't know where I'd be right now.
I come here to get others' experiences , strength and hope...and hopefully, i can give back to this community in a positive way as well. Unfortunately, life happens and some of us have better outcomes than others. I feel safe to come here and share my struggles as well as my triumphs ...
Julie, I feel like my view is not always a popular one either. However, that's o.k. We are all entitled to feel how we feel and we may not always understand each other's thinking. I just always try put comments in perspective because people have different views depending on what else is going on in their life and I would imagine that most peopole who get a good result from surgery probably get on with life and don't stay on support groups. We all react and cope differently with illness, surgery and recovery, other problems and daily life and that's o.k.......there's not necessarily a right or wrong response; it just means we think differently, that's all.
I loved the analogy about the elephant. One bite at a time or one day at a time always works well for me too. AND, in spite of thinking positive, I don't ever feel blessed from having the problems that I have (actually most of the time I kind of hate them). I think, though, that everything happens for a reason and that things turn out the way they are supposed to, even though we don't understand it, so I don't do much questioning of it. AND there have been blessings that have resulted from my problems and especially all the surgeries I've had. I would never have met all the wonderful people that I've met through support groups (some in person and some on line) and understood how deep that caring and friendship of friends and strangers could be.....they have all left footprints on my heart. As I've said before, our personal friends and our church friends cooked our meals for us (sometimes at my house) for about six months during my aneurysm surgeries. They brought them here, placed them on the table and all we had to do was sit down to eat......people that I didn't know very well even brought meals. That was a tremendous blessing for my husband and me that we can never repay them for. I got hundreds of cards during the two years I was housebound, some from people I hardly knew and even some from people I haven't seen since I graduated from high school (and that was a long time ago). I would come home from an appointment with bad news and there would be cards waiting for me to cheer me up and that was such a blessing. I would much rather be normal (whatever that is) and not have to deal with any of the stuff I've been through. But, it is what it is. When I was spending about l0 years of my life in the hospital, I was told I would never be able to get married, have children, etc., But, I resolved to prove them wrong and I did. I felt I did have a choice and I resolved way back then to make the best of it and not let my medical problems ruin my emotional and physical being and, more importantly, my life. As far as I know, we only get one shot at this thing called life and it goes by very quickly. I feel like I turned around about three times AND my kids were grown and now my grandchildren are growing up. I don't want to miss that no matter how bad I feel. I recognize that not everyone is not there yet. I know it's hard for some to understand seeing the positives in some of this stuff and I don't really mean to offer criticism for that, but want to offer hope and encouragement that life can be better......I do......
when i started this discussion it was really meant for the newly Dx'd folks...I had anger and depression at first...mainly from the run around from the medical community.Thank God I have no anger for this Dx. But some folks may have a tough time coming to terms with the Dx/Sx ect...even years after surgery..i was lucky and got some relief, others were not so fortunate...We are all in this together to support , listen and empathize...IMHO>
Since surgery in8/08 I have been blessed with improvement in some areas..however, I have had setbacks ..but hey, don't we all in this thing called life.
I no longer have anger towards Chiari..it is what it is.....depression? well....at times I suffer from that but I think many folk go through depressive times and come out the other end fine.
right now for me , with this new Dx:RSD: Reflex Sympathetic Dystrophy..i am taking steroids to stop the spread of the disease/illness...I thank God I have a doc who knew right away what it was and sent me to yet another doc who deals with this more than he does...i guess it is not too common...LOL
So, my body reeks of steroids, i am trying to take the side effects on the chin...but a major side effect of steroids is depression..i know it will pass...just hate the feeling , ya know.So wish me luck...that i don't get ROID RAGE!!!!LOL
I KNOW you are a strong person. With my neck fusion, I could never have used the computer like you do to respond to all these people. And at the expense of your own health because it puts stress on the body - Just my opinion! I attempted a few times in the first few months to use the computer in part because I was bored. I had to try and see the computer while wearing the cervical collar, it was too painful and I just couldn't do it. My point is: Don't underestimate yourself. And, you oftentimes have to be tough to be a woman in the military. Thanks for your service. It's very tough to be a military member; I know - I worked as a civilian supervisor for the military for about 25 years, and, even as a supervisor, it was sometimes hard and, depending on the Commander, very much a man's world.....I had to do a lot of defending my personnel and fighting for their EPRs and OPRs, so I know you have to be tough and resilient!
Well, I've been on here past my limit and I'm starting to hurt, so.......later.
You didn't offend me...honestly....the steroid are for 1 mth....but if it does the trick...i will take it.
And i 100% agree with you..we are all different people with differnt takes on things....I guess I think we are lucky to have a place to go to voice our feelings..thanks for your understanding on the steroids!!!!
Susan...Shirley is right...you're a tough gal, been through a lot and still hold it together.....proud of you, susan
julie...yup...prednisone...yuck...hopefully it will work wonders.thanks for asking!
Jaime: Hi....I hope you know that this is the place to vent your feelings, share your sucesses ..the whole 9 yards.
we should not have to worry about every word we say....tell it how it is for you...all I can give you is my experience, strength and hope...I am here for you.
Love and Blessings,
Excellent question Lori. I read through the responses below and found them so wonderful and inspirational. Would folks mind if I sampled a few of them anonymously and put them on the Ben’s Friends blog? http://blog.bensfriends.org/
I think this is the essence of the support networks, asking for advice and getting a lot of love and advice back. I hope everyone appreciates the fact that someone can look for guidance and within 24 hours there are 10 well intentioned, loving responses back. This is why Ben and I created the networks and it means a lot to me and I think everyone else on the network that there is so much love and understanding here.
I think it would be great for Ben's Blog.
oops...sorry....Yes Scott...sorry for the name mix up on your suggestion!!!
U go girl!!!
I think I’ve approached the acceptance stage a lot differently. Everyone handles things differently.
I know I have a Chiari malformation. I knew what it was for two years before I had my surgery. When I finally learned what it was, I immediately looked it up and felt like I had an aha! moment…as all the vague symptoms I’d had for so many years were on the list. When I got symptomatic to the point where I decided to have the surgery. I had it. I prepared ahead of time for the recovery and IMHO, the surgery sucked! Most painful thing I’ve ever gone through, but I lived. I know what it is and what to watch for with my son and feel way more informed now than I ever was.
Now, I still have some symptoms and I’m tired all the time. That could make anyone terribly depressed. I do not tell myself this is a progressive neurological disorder and I’m going to have to deal with it for the rest of my life. For me, that makes me more depressed, and knowing that there are some people who improve so dramatically that they go on to live a totally normal life, keeps me going. I know the possibilities, but I choose to live day to day. Whether or not that will ultimately be the case for me, I don’t know…but it gives me hope and I choose to hang on to that hope.
How to you eat an elephant? One bite at a time. Therefore, am I going to look at the rest of my life as one huge elephant? or each day…or each moment…as a tiny bite. Some bites will taste GREAT and some not.
Also, I do not label myself either as a “chiarian” or “zipperhead” , just as I would never call my son an “aspie” for his aspergers. Personally, such labels annoy me and make me sad. It’s just the way I deal with it and the way I feel about it.
Also, I’m a busy mom of 3 and a business owner. If I give in completely to the fatigue and symptoms, or spend too much time focusing on my diagnosis, that’s going to depress me further and be detrimental to my other tasks at hand.
What I HAVE learned mostly in acceptance is learning to be gentle and understanding with myself, because probably no one else in my family will be. It’s ok to accept and know my limitations…and I have many.
This week, I am completely exhausted. My daughter has been ill and I’ve also got my son having neuropsych testing this week. He had it all day Monday, and the driving wiped me out. THEN, my little girl got sick and I had to spend ALL evening in the ER with her. I could have cried because my neck hurt and I was beyond exhausted. Then I was basically good for nothing yesterday…but I knew that was going to be the case.
So I have to learn to roll with the punches and be flexible, and accept that plans can change from day to day based on my hectic life.
Before all this, I would beat myself up big time for not being able to “do it all” and not being “normal” like everyone else.
So here’s the way I look at it. Just as my son who is on the Autism spectrum is not defined by his diagnosis, and is just “who he is”…unique and special , so I am just “me” with my limitations as a result of having Chiari malformation.
As long as I treat myself with care and be as responsible as I can with my health, I know I’m ok. Life goes on. My life will go on and I’m going to make the most of it.
I’ve battled depression off an on for years, but one thing is for sure, THIS diagnosis will not get the better of me and I don’t dwell on it. One thing that initially had me terribly upset was trying to read read read about it on the internet. I stopped and I feel MUCH MUCH MUCH better. I’m a firm believer also in mind over matter and a mind-body-spirit connection. At this stage of the game, for me, if I’m going to read up on anything more, it’s the studies that that support that.
Lastly, about depression. I have a very strong faith in God. Every single solitary time I go through a depression, I come out of it having learned something new and been taught a valuable lesson from God. Every time. Literally. When I’m going through “one of those times”, I cling to my faith KNOWING that “this too shall pass” It shall.
The sun ALWAYS comes back out! It always always does.
Lori and all the ladies....Great words expressed and written above. I did not go through the stages of grieving when I was diagnosed. It was a relief to have an explanation for all my symptoms and complaints, so that I knew at least I wasnot crazy. My anger and frustration is from family/friends that have zero idea that Chiari is more than a headache.
This site allows me to feel normal and I thank all of you!