We all want soo much to be able to be known for who we were at one time and who we are.... My Chiari has damaged my every area of achievment it seems... I was wondering if people would want to share what they've done in life and how much they miss it. I know it's important to me to be known for who I was prior to my symptoms worsening. It's depressing at times (most of the time). I was soo determined in my growth as a person making it toward office management and creating so many ideas while running the show. I also worked as a paralegal where I was opening and closing files such as medical malpractices, million dollar estates, real estate transactions, litigations and legal guardianships, and much more. When it came to the home, I could decorate, clean and cook all while having fun! At one time I could kick in and jump on a 4 wheeler or any trial activity in front of me. I LOVED to dance!! ....
NOW?... i'm lucky if I can pull off "thinking" straight and remembering a name or number. My conversation is shortened and I have 'desire' to do more yet am haulted by this 'mind block'. I would give anything to get the GUTS to jump on my horse or even try to bring myself to redecorating my home. I don't even have the stamina to control my own home let alone an office of any kind.... I am on disability and cry often wanting to fight my way off of it. People around me talk to me as if I'm stupid and never trust what I DO know due to my mistakes I make on small things around me today.
I just wanted everyone to know. DON'T LOSE WHO YOU'VE BEEN EVEN IF YOU CAN'T OR DON'T FEEL YOU ARE ABLE TO DO IT ANYMORE!!! How can we fight this together and maybe support one another to accomplish that one more time??? Love ya'll and stay strong!
I understand your frustration about wanting your old life back. It is a sense of loss that you go through, a grieving process if you will. Years ago, I was an assistant manager at a retail store. When I first started it was so great because it was an amazing group of girls. I never left feeling like they were going to talk about me when I left the store. We truly became like a family until they fired my Manager abruptly. They claimed she was stealing time from the company. The whole thing was absurd and then they brought in the devil, she did truly steal time from the company. My daughter named her. :) She ruined the store, made everyone's life a living h**l. She would sit in the back room all day and make others do her job. I become so obsessed at keeping my job that I let it screw up my priorities. I was dying, the stress was literally killing me. I wouldn't quit, and even though I worked half her hours I oversold her by over $10,000 the last quarter. I was fired for having OCD and I was too sick to fight it. The truth is there is no way I could have worked there or anywhere now. I did try a job after that at another retail but the management was horrible and I just couldn't do it, plus my migraines had started by this point. I also was making the same amount of money that I did as a Junior in HS. That was very upsetting that after 20 years what did I have to show for it. I have 4 beautiful children that for the most part are good kids. I have a loving husband that puts up with my crap when most would have left me by now. I do hope someday to return back to work but I don't know if that will ever happen. Last year I spent a lot of my time in the school helping kids improve their reading skills. I started just with my son's 2nd grade class and by the end of the year I was helping with 2 more classes that I didn't have kids in but knew the teachers. I worked with Title 1 and learn so much about reading, what to look for, comprehension. Even though I had migraines every time and a kid in my son's class would ask every time if I'd found my brain yet. I found that I could hold off the migraine while working with the kids. Now, I can't go in at all. So now teachers send papers home with my son for me to correct. It has been a huge adjustment and still is.
I took find it hard to be motivated to do anything. I have a friend, a teacher of course that is great with interior decorating and our house really needs to be painted inside but everything seems so overwhelming! I have lists and lists in my phone of projects I would like to get done. If I was working we would have been able to buy a second home that we have wanted for so long. For some reason that just isn't in the cards right now, I am supposed to be at home. My husband had more overtime shifts last year than all of his other years combined.
I have a friend name Becky. Becky and her husband, a therapist, had a dream of opening up a Bed and Breakfast. Not only for couples to get away but also to have marital counseling if they chose. They put everything into getting this Bed and Breakfast ready. After a few years Becky was diagnosed with something (I don't even know what it was called) that required her to wear oxygen at all times. She couldn't keep up with the Bed and Breakfast anymore, her prognosis was 10 years max. I remember telling her how sad I was because this was her dream and she just looked at me and said they would find another. She passed away in 2006 but her memory and her enthusiastic optimism I will never forget.
I don't know why we have to go through these things? You're right it's depressing, it's frustrating, it's not fair! Life sucks! It is still on the wall of my bedroom at my parents house. Apparently even when you get older it still sucks. I have found though that I can be like Becky and find a new dream or I could just crawl in my bed and never get out. I try the bed thing years ago while suffering from chronic pain and having a horrible Psychiatrist. I decided I just wanted to be a Mom again and I've stuck to that.
I too had aspirations of climbing the corporate ladder and maybe one day I will. For now I just take it one day at a time and I do my best to help out wherever I can. I could mourn for who I was but that isn't going to change anything. I do believe everything happens for a reason, I just don't have a clue what it is! Sorry, this is so long, I gotta get off my right eye feels like it's going to launch right out of the socket and my right temple is pounding so hard I think the vein is going to explode. Time to go in today and try and figure out what is wrong. Oh and I love your dog, so cute, especially the face. These are just my ramblings with a massive migraine so please don't take offense. :)
I’m learning to be happy with who I am today. It’s been a trial and a clawing and scratching fight but my new normal I’m learning to be very happy with and I’ve adapted my old normal into my new normal. My old normal was first my husband is in finance so he is working 12 hour days and we have three teens that I drive to all activities in and out of school along with my responsibilities as booster club Vice President then we have a thoroughbred race horse business that before we had anywhere from 9-14 horses at home at all times that I was responsible for, then I had my own business of sunless airbrush tanning I love doing this I have a salon at home, dinner on the table every night house clean laundry done and I ran 4-8 miles every day.
New normal… Still have the wonderful husband and teen kiddos :). Still vice prez booster club (worked to hard for that) closed down business but just recently opened it back down to 4 horses life has changed dramatically oh gained 25 pounds no running ugh it kills my head , but I’m trying to find my way back to me
We're not even going to compare weight gain! Needless to say, would take your 25 pounds any day! I'm glad you were able to keep some horses. We have a thoroughbred farm just down the road but I think they sold off all the horses. When I first moved out to the sticks, the house I'm in now used to be a field with horses. We could walk right up to the fence and they would come up to you. Another neighborhood had cows. It was so weird to live in a neighborhood and here cows. I was used to falling asleep to the sound of cars. I still find that more soothing then the frogs and the cows that someone else has. They get so loud at night, it reminds me of the movie Barnyard, where they always say milk me. Of course the first sign of spring now is the retaining pond full of frogs.
I think that the hardest thing to do, at least for me is to be happy with what I have. I used to think when I have this I will be happy, and that. The truth is we have a roof over our head, some people don't even have that. My husband has a job, for now our cars run. We may never get the house of our dreams but that' okay. As long as everyone is safe and happy and healthy I'm happy.
Chiari has made me a better mom, wife and friend. I was diagnosed in 2009 which was a rough year. My mother was diagnosed with a left side brain tumor and we lost some close family members. I was quitting one job to go get my LPN license..which I did in 2011. But thats when my symptoms progressed. I had decompression surgery June 4th last year. I got a part time job last year in Nov. but had to quit because I couldn't handle the stress and health issues too. I have just decided to enjoy my family and friends. I do not dwell on what I can't do but what I can do. It is still a struggle getting up everyday but I always thank god every day I get out of bed no matter how I fell.
Everyone has such great stories on who they were and even who they are today. Each of us shows a significant amount of struggle from wanting to be or do what we have been or done! It's so great to know that each I am not the only one who can put some hope into 'being me' again someday.... yet still trying to be happy with today... I suppose support is the main reason we all came here and support is what we are recieving in many ways.... Whether it's a small change or our lives or large, it's still a change that we wish to return to.
I noticed a few on here liking horses. Are you still riding and if so, what type of problems do you have to watch out for yourselves????
Well it's great and inspiring to read everyone's background of success and trials in life... It truely helps (I believe) for us to strive toward something positive while living in our situations! Love you all.
My severe symptoms started last June... Up until then, I was going to college (15 credits left to graduate), working full time, building my doula/childbirth education/lactation educator business, volunteering at a drug rehabilitation center for women with children, and trying to make my city a healthier place for women to have their babies. My husband of 18 months and I were talking about starting a family. I was proud of how far I'd come: from homeless drug addict to productive, happy, and (mostly) healthy.
Now I spend most of my time in bed. When I see another "we're expecting!" notification on Facebook, it slashes my heart to pieces. When I get emails or calls about my business, I have to refer them to other professionals in the area. When I see those professionals starting support groups or classes - the very same I was trying to establish in our city - I am overcome with irrational jealousy. That was supposed to be MY life...
I know it's not right to feel that way but I can't help it. Everything was torn away from me so quickly and there's no guarantee it'll ever come back.
I know it’s hard right now but one thing you’ve learned and you need to hold onto is this will pass and you will find your new normal. It may se hopeless at times but the world still turns you will come to your own you will have children you WILL feel better and you will have a wonderful business just right this minute you need to take some time for you and take care of you. Sending you lots of love and it will all come to you the universe teaches and we learn that sounds way to hippy ish for me but I mean it just breath and go through this and the rest of your life will be on the other side so it’s so worth it!!
Shadow I have my four horses I rode up until an accident two years ago I got kicked in the arm and he shattered my arm with multiple surgeries and infections screws wires etc that almost killed me it took about a year to semi recoup from but I could never fall on it again (which means no breaking 2 year olds) so my severe balance issues started around then so I haven’t been back on :(( I send my young ones off and the track horses have trainers at the track at home I only have 4 my first horse she’s 27 and 2 brood mares that used to race for us and a stud at a place down the road at a friends (away from my girls)
Of course you have the right to feel those feelings! It's the ones that act on it that have problems. Look at all you've accomplished! What an amazing person you are! You fought for that life when others would just wait for a handout, you worked hard. You were doing such amazing things and so many! I think that's the hardest for me is now I can't even do one of the many things I used to do, is it like that for you too? Who knows maybe that life will happen for you but just not right now? My sister in law has MS and she is an incredible woman, and if I've shared this story already I apologize! I'm sure you guys understand. She was skiing with her 5 kids and when they take their gloves off she always tells them to attach them and put them in their helmet. Her youngest didn't do it so she kept watching to see if the glove would fall out. Sure enough when they got to the car one glove was missing. She knew approximately where he had dropped the glove so they got in the car to drive there. When she got to the parking lot it was closed to people going in but people could come out by going through a gate that opens. She knew that walking the parking lot would be extremely painful and would take her a long time. So she decided to try and slip in after someone had left. The people leaving saw what she was doing and kept blocking her by going slow. At this point she is extremely frustrated and all she can think of is I need to get through this gate, she had completely forgotten why she was going through the gate. Finally she realized she was not getting the car through the gate, it just wasn't going to happen so she resigned herself to walking, I believe she had been trying to get through the gate for some time now. She parked the car and walked through and there was the glove. Someone had picked it up and brought it to the entrance/exit. She started crying because she realized that she had lost site of her goal and her Heavenly Father was trying to help her by using a kind person to bring the glove closer. Had she just walked through she wouldn't have had to deal with all the frustration. She had lost site of what her goal was and let it take her down a different path. She had shared this with me and I found this very interesting. How many times do we get caught up on something that we completely forget why it is we are doing it? I truly believe everything happens for a reason. Why we have to live like this I don't know. But I do know you have been through some incredible things. Things that only you would understand in someone else, I don't know if he is "molding" you "humbling" you, which I doubt because you are so great! I always say that there are three answers: yes, no and not now. The last one I find extremely frustrating. I do believe you have wonderful things waiting for you, but for some reason you're in "not now". Of course you are doing amazing things here and have helped more people than you will ever know. I hope that I haven't overstepped here or caused any offense. I think you are such an amazing person!
Sarah
7thhousedoula said:
My severe symptoms started last June... Up until then, I was going to college (15 credits left to graduate), working full time, building my doula/childbirth education/lactation educator business, volunteering at a drug rehabilitation center for women with children, and trying to make my city a healthier place for women to have their babies. My husband of 18 months and I were talking about starting a family. I was proud of how far I'd come: from homeless drug addict to productive, happy, and (mostly) healthy.
Now I spend most of my time in bed. When I see another "we're expecting!" notification on Facebook, it slashes my heart to pieces. When I get emails or calls about my business, I have to refer them to other professionals in the area. When I see those professionals starting support groups or classes - the very same I was trying to establish in our city - I am overcome with irrational jealousy. That was supposed to be MY life...
I know it's not right to feel that way but I can't help it. Everything was torn away from me so quickly and there's no guarantee it'll ever come back.
I am so sorry to hear about your accident! If you started having balance issues since then are you guessing it's from the kick and the jolt to the head and neck?? and did you get an MRI done following the accident? For the kick to have shattered your arm it had to have been a pretty significant blow from the kick... Again I am so sorry to hear that.... also would you say a kick is more damaging than a fall off a horse when it comes to the Chiari?? Should I stay off the horses?
I'm not into going faster than a slow walk on one as I am new to it anyways. Brandi said:
Shadow I have my four horses I rode up until an accident two years ago I got kicked in the arm and he shattered my arm with multiple surgeries and infections screws wires etc that almost killed me it took about a year to semi recoup from but I could never fall on it again (which means no breaking 2 year olds) so my severe balance issues started around then so I haven't been back on :(( I send my young ones off and the track horses have trainers at the track at home I only have 4 my first horse she's 27 and 2 brood mares that used to race for us and a stud at a place down the road at a friends (away from my girls)
I am 42 and have been in the emergency response field since I was 18. After the years of hard work I finally made Captain on the fire dept I work for. One day at work two at home its a great schedule. Know I'm on med leave and dont know if I'll ever be cleared to be a firefighter again. Depressing? Very much so. But it's where I;ve been or where i'm at. It's about where I'm going and how I'm getting there.I believe as ppl we are constantly changing ( hopefully for the better) and what we did in the past is only a portion of who we are it doesnt define us. I know that I have to look ahead and plan for the new me and it helps keep me focused.
Beautifully written, what a great and positive attitude you have! Especially for accomplishing so much. Wherever you end up people will be lucky to have you! Send some of that positive thinking my way (and don’t hold it against me that I’m married to a cop).
My life was Perfect....Perfect Family, Perfect Career, Perfect Future....Perfect Everything.
The past 12 years has taught me Perfect is not Faith and Happiness and Wisdom and Compassion and Empathy. Chiari is Horrible, but I would never change who I am now for what I used to be.
I hope you all get to this place. Even with the constant pain I am very blessed. I was told by a Clinical Psychologist "I had to make my pain part of who I am". I thought she was crazy, but she wasn't. At some point you will come to accept your Chiari as part of who you are and you will have an epiphany.
I often tell fellow Chiarians you have to mourn the Old You and rise from the ashes like a Phoenix to discover the New You.
It isn't healthy to focus on our pre Chiari life. We were all 6 ft tall and bullet proof. I would recommend instead what DragonSlayer said "Look Ahead and Plan for the New You".
I think, I will always miss hearing my daughter cough and or sneeze and not holding my breath, even with the surgery I still find myself closing my eyes and praying when she coughs.
Thanks Sarah. I want hold the cop wife against you. Have family and friends that are police.I really try to live positively and not just have positive thoughts. My whole life I had to deal with something and if you're not moving and changing you get left behind in the glory days. I'm not going to worry about my downs they will pass. I learned to live full and die empty. Dont leave thinking if only...or I could have if only... Dont let limitations hold you back let them make you stronger Smile big daily and love all around you.
Sarah Pugmire Baron said:
Dragonslayer,
Beautifully written, what a great and positive attitude you have! Especially for accomplishing so much. Wherever you end up people will be lucky to have you! Send some of that positive thinking my way (and don't hold it against me that I'm married to a cop). :)
You have such a great attitude! I wish I could be as positive as you. I used to live the when I have this and this… I realized I would never be happy that way and that we choose to he happy. I know also there are some cases where they need help I would never tell someone something cause my mind just went blank! Basically if someone was depressed because if other reasons. Sorry I am struggling with my brain today! Just wanted you to know how much I appreciate you as do others I am sure! Your upbeat attitude is definitely something we can all aspire to! Hope to chat soon!
