What goal or desire did you have when you were down? What keeps you going?
AnonymousOctober 13, 2008 at 4:26 pm
Hi everybody! In one of my previous posts I mentioned the name of my car Doesn’t everybody name their car? Wait, don’t answer that. Anyway, her name is Hokua. Hokua is a Hawaiian word and it has two meanings. The first is the color of a breaking wave and my avatar shows that. The second meaning is to be spiritually uplifting and she is that to me every time I see her. So I was thinking. Each and every one of us has had to focus on something to keep us from going insane when we were totally down and out. Each of us has had to think of something near and dear to us when things are bad just to get us to pick our head back up. Grandson? Granddaughter? Prized pumpkin?
So each of us has something for their hokua. If it’s not too personal I would like for you to share what that is. I bet there are as many common hokua’s as we share common symptoms…..
AnonymousOctober 13, 2008 at 5:35 pm
Hi Johnny Mac! My story is a little different but this is what kept me going. I have three beautiful children which are all grown now. My husband Andy is my second marriage. My first marriage was not a great one.
I met Andy about 3 years later and we got married.
My first husband never paid child support and would forget their birthdays, Christmas and everything else. But yet he insisted on seeing them. I would let them visit and see their dad. I started getting sick 3 months after me and Andy got married. Andy raised my children as if they were his own children and was really more of a father than their own dad.
My first husband died at a very young age right after our divorce. And my children and I went to the funeral. He left them with nothing! He had nothing! Made $600.00 a week and had nothing.
I guess that was my will power! When I saw my son and two daughters have nothing of their father, I just did not want my children loosing their mother too and having nothing to give them in future years. It’s bad enough loosing a dad but loosing both parents at a young age. I prayed every day for a diagnoses back then and eventually got one.
Too keep my mind off my illness I started my crafting and would lay in bed making each one of my children a Hope Chest. Little Heirlooms for them to have when I either passed or when they got older. They have crocheted Afghans, Pillows, Christmas Decorations each have a set of dinnerware, silverware and I even made my future grandchildren baby blankets and clothes. And two have now been born!
So my children are what kept me going. I made goals each week and now they all have their own box of little goodies. Well! If I died today! My children would have an inheritance now. Been collecting for years! I made my mind up that when I go, they will have something from their mother! My second husband even gave them a gift! A special gift! He took my children in and became a good loving caring father! In later years my children wanted my husbands name and Andy adopted them. Andy and I tried twice to have a child of our own but I lost both babies! The first pregnancy I was 5 months. The baby died 3 days later! A little boy. Then we tried again and we had a daughter. At 7 months the babies heart stopped and she was still born! My children wanted Andy to be their father and we granted them that wish!
My husband and children was what kept me sane and fighting! Thanks to them I am still alive today!
AnonymousOctober 13, 2008 at 9:28 pm
I would have probably said my grandchildren also. We have 5 from 2 1/2 to 11.
But unfortunately they are in Ohio. They still want me to come back and asking why has kind of slowed down. Since our bad news has just been recent and I have been in kind of a very depressed state. So yesterday I decided I needed to do some cooking in between being stuck to the computer as I usually am.
It was my turn to have this game of Mah Jongg at my house and although some of the girls offered to have it for me knowing how I am feeling right now about my husbands new diagnosis. I decided to push myself to have it anyway and to do some cooking for them also. This group usually just does drinks but I needed something to divert my attention to something else. Yesterday I washed off the porch ( we are on a lake and we do get spider webs) clean back windows (lots of them) and today cooked and cleaned. It did help so after I get going on mailing to Boston U and Mayo tomorrow I will try and remember this. They were surprised and said they did not know how I could handle this but I had to push myself and told them this was for me. They knew what I meant. I got lots of hugs which I really needed . I am sure this would not work for most women if they hate cooking, but it made me feel good.
AnonymousOctober 14, 2008 at 12:50 am
family, family, family!
i have 3 sons. esteban is 13. eron (pronounced as aaron) is 7. kai is 2 months.
my sisters – we are all close
my dad – he’s a big sap. he cries to lassie movies! it so cute!
my mom – of course
my hubby – we’ve been friends since age 13
goals – i have stuff to do, things to accomplish, lives to touch
actually, this song called, “its not my time”. love, love, love that song!!! came out when i first got sick and thought i was a gonner. the guy is saying that its not his time, he’s not going, theres a fear in him that hes not showing, and that this could be the end of him and everything he knows. it is my favorite song, by far. when im sad, it gives me heart again. it makes me feel like a super chic or something, like, “Go ahead! Bring it on!”. its good for the ego:cool:
AnonymousOctober 14, 2008 at 1:02 am
What kept me going was first and foremost, my faith. I believed God would give me the strength to get me through the ordeal and he did not let me down. When times got hard and I was ready to give up, God would send an angel. People I didnt know and would never see again would appear in my room and offer to pray with me. My bed would rock when the going got rough. And the lots of signs He sent are too numerous to tell here right now but maybe one day…..
And then there was my family. I had four kids at the time ranging in age from 1-9 years old. They needed their momma. My husband, my siblings and my in-laws were all there for me and I had to get to better so that I would have more time with them. I was not afraid to die but was afraid of what I would leave behind….
To pass the time, when I wasn’t praying or crying, I would count the little holes in the ceiling tiles. It would bug me to no end when the nurses would come in and I would have to start all over again….LOL! It’s amazing what we can do to occupy the mind so it doesn’t go crazy!
AnonymousOctober 14, 2008 at 1:24 am
Throughout the months of crisis, the urgency of making my final preparations was a motivating factor to fight for life. I did not want to die without getting all my paperwork and finances in order for my family, and for that I needed time and enough healing to think straight and get everything ready.
What kept me going was the knowledge that I am already surviving much worse things than the paralysis and pain and damage of GBS. I know that I will survive this too if God helps me. Every day, I tell God that I have decided to live, and so far He has granted me life.
I think of my children and I want to be here for them on this earth. I think of my 2 beautiful and wonderful little grandchildren and find great joy and comfort. I think of the work that God still wants me to do during my lifetime. I think of certain personal purposes and promises which I still need to fulfill. Each day that God grants me is another day to live with everything I’ve still got, and to fulfill my life’s purpose.
AnonymousOctober 14, 2008 at 2:23 am
Just a couple days after I “graduated” if you will from the regular hospital to the rehab hospital our daughter called and told us she was getting married so I made it my primary goal to get out of the wheelchair and back walking so I could walk her down the isle. To keep going I keep my family in mind as well as my faith.
AnonymousOctober 14, 2008 at 11:26 pm
My children..alyssa was a senior in high school and I was determined to go to her graduation without being in a wheelchair..
Joshua has always been very athletic and I wanted to be out of the hospital in time for basketball season.
Made both those goals and continue to push myself in order to be there for my children.
AnonymousOctober 15, 2008 at 1:06 am
as shallow as this may sound, i wanted to be pretty for my huband again. there were many days that i would use every ounce of energy i had just to get a bit of makeup on. i couldnt act like his same Jamie, so i thought the least i could do was try to look like her. looking like the “old” jamie was a huge motivating factor every day, after the others that i listed in my previous post. i remember many days that i did not bathe. the shower and tub are both upstairs at my parents house, where i stayed when i was at my worst. i couldnt breathe enough to walk more than a couple steps, let alone climb the stairs. and the humidity of the bath or shower was suffocating. i looked and felt so gross! one day, my step mom looked at me sympathetically and told me i had to get myself into the shower. i had tried but it wasnt possible. actually, i got all the way upstairs and into the tub but had to drag myself right back out because i felt like i was suffocating and like i was going to go unconscious. i hated the way i looked and thought how horrible it must be for my husband. i wanted him to have as much “normal” as possible. me wearing makeup is part of that “normal”.
AnonymousOctober 15, 2008 at 1:10 am
wow, my last post just sounds so immature. sorry guys, but its true. after family and goals, the most motivating thing was to look like the real me. i know it bothered me more than my husband. i know there are so many more important things in life. just being honest, though. but my family could look at me and know i was sick. i didnt like that. i didnt want to look sick anymore. i think, really, that what it came down to was that i just wanted life to be normal again.
AnonymousOctober 15, 2008 at 10:11 am
Jamie, I don’t think that was an immature response! Who doesn’t want to look nice for hubby? I sure did! I used to get the nurses to do my hair and stuff before my hubby came to see me. And there I was on life support asking to have my hair washed!!! Begging, in fact! They did it for me though and boy that felt good.
My friend brought me perfume so that I wouldn’t smell like hospital when hubby came. No Jamie, not immature! We women may be a bit vain though! 😀
AnonymousOctober 15, 2008 at 10:52 am
I dont think I’ve quite reached my goal but getting close. My goal is to be off narcotics and have my life back. I’ve been narcotic free since Sunday and I’m taking a med to help with withdrawls. I have to say, I feel fantastic.
I had begun to over-take my meds to hide from the pain that was in my heart and soul. I wont excuse my behavior, b/c it is truly something I did all on my own.
After waiting 6 weeks to get in, I went to a pain mgmnt dr that is liscensed to prescribe me this new med to help me get off the narcotics and I couldnt be happier with him. He knew all about CIDP and GBS. I’ve been to ALOT of dr’s and this is the first dr that’s not a nuero that knew and was educated about both diseases.
I knew he’d be able to help me. For the first time in a very long time, I knew this time, I’m gonna get the help I really need.
I havent had any withdrawls and like I said, I feel great. I feel like I am back…I got my hair cut, I look good and feel good. I know I need to work out some things yet…I have a way to go…but I’m off to one heck of a start.
Anyway…what keeps me going…what motivated and motivates me ?
Well, the first one is 6’5 and the other is about 49 inches tall. The men in my life. My husband and son, both of whom I adore.
have a great day everyone,
October 15, 2008 at 12:17 pm
My goal and/or desire when Kevie was down was to have him walk out of that hospital without me carrying him and go trick or treating. By the grace of God we did both. My long term goals and desires for Kevin are for me to live long enough to be sure he understands his disease should he relapse down the road. My biggest goal and desire is to have Kevie beat this within the next 2-3 years and be off of ivig, cured, done, finito! I pray it happens!!!
Dawn Kevies mom
October 15, 2008 at 12:26 pm
OMG!!! I am so proud of you on so many fronts. It takes courage to face a problem that plagues you, it takes courage to talk about it with others, but it takes something else all together different to make a connection to what caused the problem. Lucky you, for noticing the meds were masking more than the physical pain!!! Too bad it is not spring, because it is kind of like you have metamorphisized from a catipiller to a butterfly as of late. Your life is kind of like a book, every time I turn the page, you are getting stronger. Your illness, concertsw/ your little man and the courage to go, the afo’s, (and the hot guy there, yes I remember your desription of him) your moms dx, the work involved w/ it, your sisters, your moms death, your move and now the middle of the book starts. Stacey’s life. You just keep going through all these stages and come out on top ALL the time. You are a strong woman!!! I am happy for you!
Dawn Kevies mom
AnonymousOctober 15, 2008 at 3:41 pm
Thank you !!!!
I wasnt going to say anything but , this is afterall, a support group, right ?
Thank you for the kind words…you are the best. And, Dawn, you’ve got a great memory ! Yes, the AFO guy was a hottie !
I think I have alot ahead of me, but, I’m going to be just fine…CIDP or not.
One monkey at a time. 😮
I had IVIG on Friday evening. I love the home health care…thank you for that, too. Saturday we went to the pumpkin patch all day…saturday evening, without going home first, went to walmart to get the groceries…Saturday night I made dinner for Sunday. I made beef stroganoff. yummy ! I was exhausted but determined to get it all done so that Sunday could be a day of rest…well, yeah.
Sunday, my legs hurt so bad that I could hardly walk…:eek: Monday was tough, too…but I think the IVIG helped this time…I definitely had strength. I have one more treatment and then we’ll decide if I continue it, (if it works), or go back to the old nuero and ask for more.
I’m happy. I’ve been happy for about five days in a row. It’s a great feeling.
As for my life being like a book…I’ve been told that I could definitely write one. It would be a whole lot of drama !!
thanks again !
AnonymousOctober 15, 2008 at 5:54 pm
So many excellent drivers. We are all truly special people and I’m honored to be one of us.
For me, I just wasn’t done yet, you know? I was just talking to a bunch of friends a day or two before my attack and we were talking about how the
50’s are the new 30’s for people. I mean at 54 I was (and will be again!) so much more physically active than my elders were when I was a kid.
So I have so much more living to do I am not about to let something like this or anything else prevent that from happening. Sure, my feet and hands hurt sometimes, but I’m used to dealing with pain or discomfort in one form or another.
And yes, I have my wonderful wife who was there throughout the whole thing as well as my two kids and I’m really grateful I have them and all of my friends.
I guess the best way to sum my feelings is a quote I like a lot:
When I die I don’t plan on going quietly into the grave. No, I’ll be skidding in sideways with a beer in one hand and a surfboard in the other screaming, “Woohoo, what a ride!”
And like I said, I’m just not done yet…. Cheers!
AnonymousOctober 15, 2008 at 10:24 pm
listen to all of you! you are all so awesome! stacey, you are one tough chica! dawn, check you out supermom! and Johnny! you sound like a blast!
im doing so well now that i forgot how hard it was to be pregnant and sick at the same time. a huge goal for me was to live long enough to deliver this baby, and for him to be healthy. the thought of my family losing me and the baby was too hard to acknowledge. now look! not only am i alive, but i am super healthy! and kai is sooo healthy and sweet and lovable!!! i used to cry and pray so hard that if we did survive this, i would be able to take care of him by myself. shoot!!! we are rockin’:cool: we are all good!!!!
life is good, isnt it!
AnonymousOctober 20, 2008 at 3:41 pm
well JESUS is only thing keep me going. cause he would remind me your wife and kids need you.and after a time we thought it was over. but i guess it was relapse cause legs went out and every thing went nuts .so here we go he reminded me again. then mom got cancer and stress from this relapse. boy stress can kill.jesus pulled me up dusted me off and walked beside me.and dad got sick heart failur.only lived 4months after finding.yet again.but this time jesus sent his angels to care for me and he carried me.and he told me threw one of the sweetiest peps i no i think shes angel told me its a testamonie to your faith.so keep going.here i am but latley been depressed cause fighting disability since 05 but 06 with lawyer. and still waiting so im praying and proclaiming victory in jesus name every day or more:D 😀 thats my story in nut shell
AnonymousOctober 22, 2008 at 8:24 am
one of the things that kept me going when i was sick was this christmas party that i am in charge of every year. it is for my dads side of the family and they all live over an hour away, so i usually end up doing it all on my own. i remember leaning on the doorway of my parents den, looking at my step mom and crying that there was no way id be able to finish what i had started. i told her i was convinced that i wouldnt be around for christmas. she couldnt tell me i was wrong.
well, everyday i thought i would die, but i didnt, so little by little i got that party arranged. i was too sick to do invitations, so i called a couple uncles and aunts and asked them to do some of the phone calls for me. it was just so hard to breathe, let alone talk! my dad did some calls for me, too.
i buy all of the minors presents every year, too. the gift exchange that people had tried in the past never worked out well. this year, i had bought alot of gifts ahead of time, but was too sick to wrap them. so what i did was buy an “i love my grandpa” coloring book and had each kid color a page. that was their ticket into the “christmas store”, which was just a decorated table filled with presents. i laid on the wicker love seat at the front of the church next to the table and watched each kid do their christmas shopping. it was cute because most of them picked out presents for other people, rather than for themselves. id hear them say, “Im getting this for my mom! She will love it!” id collect their drawings to take to their great grandpa, who wasnt well enough to come.
it all went over just fine. i had to leave early r/t breathing problems, but my biggest concern was the kids and they were insanely happy. thank God for small miracles, like happy children!
AnonymousOctober 22, 2008 at 10:45 am
What started me going was a very wonderful therapist who realized how bad my depression was and ask if he could say a prayer at my bedside. While I was paralyzed and could not move, he also informed me it took a long time for a message from the brain to get to the big toe and remind that toe to move. It took three weeks for that message to reach the big toe but the day I saw that big toe move I knew eventually the messages from the brain would reach other parts of my body. With encouragement, love and support from my husband, family and physical therapist I sent those messages from the brain to my body and they slowly started to work. I have chemical allergies that give me terrible headaches and cause me to break out in cold sore like blisters around the mouth area. A lady that worked in housekeeping for the hospital held me in her arms said soothing words to me and put something on my lips. It felt as though I was being held and soothed by my own mother that passed away 27 years ago. Someday I will see those two special people and let them know how much they started me on the road to recovery.
AnonymousOctober 22, 2008 at 10:47 pm
you gave me goosebumps. you know, i was gonna tell you that stories like your reinforce all the reasons why i chose to be a nurse. then i realized that one of them was not even in the medical field. you dont have to be assigned a certain duty to make a difference. that lady could have just came in and changed the trash bag and swept the floor. instead, she chose to make a difference in someone’s life. she was meant to be there!
thanks for sharing!!! you just reminded me how little things make a huge difference in others lives!
October 23, 2008 at 12:20 am
I have to agree with Canada Jan and Jim, “faith”. God hasn’t called me home yet. And I owe what life I have to Him. So I look to faithfully serve Him as long as I can.
My youngest son was run over by a car in 1993 and was taken by life flight to Galveston UTMB. We almost lost him in the local hospital ER and was barely still with us when they finally took off. I prayed with my church family in the waiting room and acknowledged that my son really belonged to God after all and that God entrusted him to my wife and I while he was here on earth. I told God that He knew what was best for our son, but if it could be His will we would like to keep him here a little longer. The MRI showed he had bleeders in his brain and some bone fragments. My sister-in-law’s father was a doctor at UTMB and he went to the hospital and was in the life flight dispatch office listening to the reports during the trip over. He said my son’s condition improved throughout the flight.
One of the life flight nurses on the helicopter later told a mutual friend that “it was weird, you could see the supernatural at work on him on the helicopter”.
So many other miraculous things happened during that time that I can’t write them all down here, but to make a long story short, my son went home with us a few days later.
Both of my sons are married now and I have the most wonderful wife, church family, friends and God has work for me to do still in my circles of influence.
From what I’ve experienced in my life, I know (have faith) that He can and will give me what I need to accomplish His purpose. He’s even bigger than CIDP.
Sorry for rambling, but thanks for this thread and opening up the door for me to share …
BTW … I like the car and yes, some of my cars have had names, but only the ones with a personality (James VegaBond – 1974 chevy vega, Thunderfish – 1963 ford thunderbird, My C-I-V-I-C, yes that’s the car for me (sung to the tune of “my B-I-B-L-E”) a 1995 honda civic, and my 1997 honda del sol). Pretty nerdy huh?
October 24, 2008 at 12:10 pm
I guess I got caught up in telling part of my story and didn’t completely answer your question.
I do set life goals and keep updating them as I achieve them. Two of my life goals were to see the Aurora Borealis and the Southern Cross constellation. When I achieved those I set a new one to see a humpback whale in the wild. I achieved that this summer. I now have a new one to get my [COLOR=”Red”][B]SCUBA[/B][/COLOR] certification. [B][COLOR=”Red”](I wonder if any other CIDP patients are divers?) [/COLOR][/B] :confused: Maybe someone can give me some guidance???
I have some long range ones: to write a book and to see my grandchildren. We will see how those turn out…
It is good to not only set goals, but to keep setting goals. It does keep us going.
AnonymousOctober 24, 2008 at 7:15 pm
I don’t think your religioous beliefs or your names for your cars are nerdy at all, Jim. I haven’t been much of a church goier all my life and I’m still not, but I sure was talking to Him when I was down and out with GBS. Hadn’t done that much since things were going real bad, real fast when I was on the pointy end of the stick in the military (Bronze Star/Purple Heart), but He’s come through for me both times really well and I’m thankful.
For me,, most of my vehicle’s names have been girl’s names except for “Big Balls”. Big Balls was an old beat up car I kept on Maui for when I was visiting there with relatives. The best thing in her was the cassette player. She got her name one day when my two kids, then son 4 and daughter 6, and I were bombing down the highway with AC/DC’s song “Big Balls” playing. The kids were hysterical, manic, out of control screaming, “I’ve got the biggest balls of them all!” So yeah, Big Balls. Can’t even remember what kind of a car it was now.
AnonymousNovember 3, 2008 at 11:35 am
JohnnyMac and others,
My wife was 4 months pregnant when I contracted GBS the second time. Had to drive her to the hospital, had to. No questions. I had the ultrasound picture of our second daughter in my chest pocket one morning when I was x-rayed, and they had to take the blasted picture again.
My oldest girl was 2 years old, and she laughed everytime she came in and saw Daddy with a band-aid on his nose (holding the NG tube in place). Despite her looking past the ventilator…..
And my younger brother was a physician overseeing part of my care, I just couldn’t have him in that position for too long. Big brother had to get better, fast.
AnonymousNovember 9, 2008 at 10:40 am
For my Brandy (the first round of GBS) I believe that it was a special nurse “Amber” that was Brandy’s determination to get better and to over come. I also believe that it was that special relationship Brandy and Amber built that set Brandy’s career goals…………a pediatric nurse. Being a long ways from home when strickened left Brandy only with her dad and I. Me, always the answer person, was an emotional wreck and couldn’t stop crying. I was watching my once healthy 14 year old baby slowly melt into a hospital bed, daily getting worse and I couldn’t change it for her or take the pain away. After a few weeks of battling, they tried to take her off of the vent and had to put her back on. When she awoke, she asked me to just let her die, thats the day the tears finally stopped for me. I walked out of the ICU unit, went down the hall, cried and cried then got on my knees and prayed for her recovery and prayed for the strength to help my baby continue to fight. I walked back into the ICU unit and told her we were done and she was going to fight no matter what it took. I also promised to be right there by her side. 3 weeks later we were on a flight and heading home. Last year when GBS struck again, I didn’t cry (at least not in front of her) and she was more determined to recover again. She had just finished her bachelor’s degree, started a new job (was taking a year off) so she could earn some money so she could go back to school and get her RN degree. School starts in January and Brandy will graduate a RN in 18 months……………Amber will be proud of her, but not as proud of her as I always will be!
AnonymousNovember 15, 2008 at 9:03 pm
For the two weeks i was getting worse and not better i thought i was dieing and i didn’t have much to live for. but my mother was at my side for almost 24 hours a day. MY reasons to get better were my mother, my father, my siblings, my friends, my boyfriend, I wanted to graduate with my senior class( I was diagnosed in march and had to graduate in june) to attend my senior prom, to go to college (CAL STATE FULLERTON!!!) to graduate from college, to get married, to dance at my prom and my wedding. this were just a few of the things that kept my hopes up even when i had accepted the fact that i was going to die.
I didn’t. I went to prom, i learned to walk again, I danced at my prom, I walked at my graduation, I attend college, and i live every day as if it were the last one i get because it almost was.
November 15, 2008 at 9:23 pm
I am so proud of you, keep up the great work and keep the awesome news coming!
Dawn Kevies mom
November 16, 2008 at 3:14 am
For me it was the believe in some higher power that would not let me down, I have gone through rough part in my life and this was not the worst one. I knew in my heart I would beet this I’m not used to loose in my life and this was no time for loosing for some stupid GBS. I have today wonderful husband that supported me all the way through this, he was sometimes given up hope I would walk again. But I have strong willpower that have brought me through rough life and it was good at this moment that I never gave into that feeling this was over. Today I’m still struggling with weak feet and lack of reflex in my arms and feet. but all take time and I know one day I will be OK. I dream about it still like I dreamed about me being walking while I was paralyzed 🙂
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