feeling alone
 

Does anyone feel alone? I am sure we all do...........I fell about a week ago out of my wheelchair. The pain and swelling is still as bad at least its the foot with my 4yr cast on. The feing alone is running out of money,having a child to support getting money from my exhusbamd but I finally finished the rest of my devorce property issues and I got the house and my what is left of my settlement and my new van and BILLS with no support. SUPPORT WITH FEELING OKAY I have been dating this great man that moved out of state me and my son was suppost to go there after court we had any disagreement and for the first time I havent talked to him in a week usually it was everyday. He said he doesnt have the answers to what I dont know I told him there isnt any and if he wasnt sure or couldnt deal with this tell me not 9 months later and we are best friends on top of that I feel like I lose ny bestfriend I told him that I wsnt going to call him I was going to wait intil he decided he called the next day we talked he was going to call me back that night I havent heard from him I havent called I am trying to understand Im dealing with the pain of RSD other medical issues Im 102 lbs trying to keep that on. Trying to be a teens mom live in a chair dont want this house, I dont or need someone to fix me but have no friends but people on my PC I feel like I lost my one and only dear best love and friend that showed me and was there to help me feel like I can do somethings with all in one moment I cant have help from my family and I feel alone at 39 yrs old I dont want to be alone the rest of my life and what about my son He has his life ahead of him he needs that. I want him to have that. This RSD isnt fair I didnt do anything WHY I guess its a depression day................... Karen(rsd kitti)

Hi RSD Kittie/Karen--I was wondering how you were doing after your nasty fall.

Karen, please don't feel alone in your situation. A LOT of people do not understand the pain, the challenges and the difficulties that RSD has created in our lives..let alone a lot of men. Some men (not ALL), just have a vry difficult time with "problems they can't fix"...it is just as frustrating for THEM as it is for you!

But, you know what? This guy TRIED--he spent the time to get to know you, and even though he wasn't able to deal with the RSD issues--that does NOT mean that there isn't someone out there who CAN.

I remeber something that you said that your doctor told you "It takes a very special person"--. You are still young, you a bright, you are TENACIOUS!! I mean, look at what you have been through--RSD, being in the darned wheelchair, going through a divorce, raising a teenager!! There are MANY MANY people out there, Karen who have NO MEDICAL ISSUES--and they just crumble!!!

You should be VERY PROUD OF YOURSELF!!! Yes, it is DIFFICULT without a significant other to support you and assist you, BUT YOU ARE DOING IT!!
I am by NO means trivializing your situation, Karen, but it seems to be that you really "have what it takes", you just have lost confidence in yourself because of the situation with your boyfriend.

BUT, Karen, neither your BOYFRIEND OR RSD DEFINES YOU! What is in your HEART and SOUL is what defines you--the RSD is just a "challenge", for lack of a better way to express it. We need to hace FAITH in OURSELVES, Karen--then, OTHERS, who REALLY COUNT, will RESPECT and ADMIRE us for that.

What are your interests, Karen? ALL of them--even if they are difficult or darn-near impossible for you to do at this time? Maybe there is a way to figure out some way for you to get out of the house a little more, now that the weather is better. Just an idea, but I would like to know--we might have a LOT of interests in common! And, maybe others of the Forum can come up with some pretty creative things as well!

I like art, and although drawing detailed things is a little difficult, I like to dry flowers and then arrange them and glue them down on paper, and use inexpensive frames to frame them. maybe you and your Son could get out for a bit, and try picking some flowers (Legally!!!!!). Or, maybe your son could bring you some back. All you really need to do is put them between paper-towels and put some heavy books on them, and in a couple of weeks, they will be dry. There is a way you can do it in the micro-wave, but I haven't tried it yet..maybe you can look it up on the web! If this interests you, and you DO find out how to nuke them, could you let me know? I would like to give it a try!

For me, it helps get my mind off the RSD, and allows me to still be "artistic"--after all "beauty is in the eye of the beholder", so I really don't CARE what someone else thinks about my art-work.

Well, anyhow, Karen--you have been through a LOT, but you are still SURVIVING. Not too many people in your situation could say that!

More later, but I will waitfor your response, ok?

HANG IN THERE! On this Forum-you are NOT ALONE!!:D :grouphug:

Most Sincerely,

Brokenwings

Hi Karen. Hope you're feeling a little better. I was so impressed when I read your story. To be a divorced parent is difficult under any circumstance but to do it with rsd is an amazing task....but you ARE doing it and should be so proud of yourself. Have you tried a scooter instead of a wheelchair? I find for myself that they are easier to use and more difficult to fall out of. Just a suggestion. Hope it helps. Please let us know how you are doing.

Hi Karen,
 

I think Brokenwing said it just right to you.

I am always amazed by people who go through disabilities, divorce and raising children on their own. You are doing it and you have a great son to prove it.

I was blessed with a husband that spoiled me even though he was disabled also and my family and friends have been there for me.

Losing Bill though lets me know what kind of place you are in. I think even losing a mate by divorce or a relationship is very hard also.

I am taking the approach that I won't ever get married again because I will not find anyone like Bill. At times he was a pain in my butt but most of the time I was a pain in his. LOL

Hang in there, you will find someone one of these days. As you said, you are young and there are some good men out there that will except you for who you are.

I hope you start seeing some better days soon.
Ada

Karen don't forget hope!
 

Karen,
Even in your darkest hour, the times when you feel so alone and lost and the tears don't stop, remember you can reach out to people. Those people who are strong, loving and understanding will be your best support. There are people who can't handle RSD, it's that simple and those people you don't need. You need to talk to your teen, say "Hey, I really need a hug", sometimes that simple contact will get you through. I can't fathom being in a wheelchair, my RSD is in my hands, which is driving me nuts typing this but I do it because I care! I know the feelings that creep up on you, the loneliness, confusion, anger, frustration at this damn disease RSD!!! But, I need to reach out too!
It took me three husbands and the third is the charm, he was 49 when we married - he said he was waiting for the right woman and RSD was not going to be a factor in his decision to love. I am 38 now and could not believe my luck in finding him. I was a single parent for a long time and dated men who could not handle my condition. It takes a strong heart, lots of love, patience and working together. I did not have RSD with the first 2 and I know they would not have been with me if I had this at that time, they were very weak people. My husband of 2 1/2 years, (4 together) is there for me, supportive and researching but there are times he seems indifferent and I need to say "Hey, I am having a crappy day here!" "Hold me". My 13 year old son sometimes is hurtful "You don't work, what do you do" He knows he is wrong and he at other times is the sweetest kid around. Teens are a rough bunch, but get vulnerable with them and they do start to crack. My friends are far away since I moved 4 years ago and so the computer tends to be my link. But, lately I have been just taking a day to stop at the library, sitting outside on warm days, I will find people around it just takes time.
RSD does not need to define your life, YOU define your life. Find things that make you smile, remember there are people who care, you may just need to jump start them. You did not cause this, it happened! Now you have to "happen".
Just remember you can always reach out on this site and you will find a willing ear, warm heart and tons of strength! :hug:

septmystic. you said what I was going to say. Kids, hubby and hugs

I get them all the time because the pain is tooo tooo bad certain days. Hurts toerrible to type but that is for Dragon software when you cannot.

Hugs to all !

Rain :p

Septmystic--that was truly beautiful and so very ENCOURAGING!

RSD KITTIE: PLEASE, keep your chin up, and CONTINUE to post here--you have SO MANY loving, caring and UNDERSTANDING people on this Forum who truly care for you.

Sometimes, I just get so ANGRY at this RSD, and how cruel and insensitive people can be, but now, I find that in some strange way, if NOT for the RSD, I would NEVER have come in contact with what REALLY COUNTS---QUALITY PEOPLE!!

I consider myself extremely blessed to have some really WONDERFUL friends (most of the e-mail buddies) and contacts. It will happen for YOU TOO!!!!
Try to keep an open heart, and keep posting here--that is a real good start!!

Most Very Sincerely, RSD Kittie,:hug: :grouphug:

Brokenwings

I want to tell everyone that cares THANK YOU so much..........Thank you to everyone that left me an message, I really need it. I seem to be going through a depression time. I'm trying to reach out to people and I'm so happy that you are all here for me and I'm here for all of you to even through this depressing time.

I was going to use a scooter instead of a wheelchair or both but I cant because it brings out the RSD in my hands more its hard enough typing but its important to be in touch with the great support I get here and the friends I am making and I hope you feel that way about me to. I will be getting back to you all this weekend to let you know how I'm doing and Brokenwings I will be in contact with you this weekend ---thank you so much............REALLY

I am going to try to get my dragon disc so I dont have to type as much when I cant to work this weekend. I brought it along time when my hands started to hurt and burn but I havent been able to get it to work right. So my son and I will try again............... Thank You ALL again THINKING OF YOU ALL ..................

Hi Rsd Kittie! Sooo Glad fto see your Post! I was thinking about the dilemna of the RSD and the wheelchair/scooter problem. Is there ANY way that your Doctor could write a Prescription so that you can get an ELECTRIC wheel chair with some sort of toggles to use for navigating around to make it easier on your hands?

The lady who used to live across the street from me had very bad polio as a child and her hands were SEVERELY affected...she had an electric weelchair that was nice, small and COMPACT for tight corners in her house...she also had these toggles that were really easy to use. She was able to go for outings in the neighborhood in her cool wheelchair! I know that she had to plug it in at nite to re-charge the batteries. She LOVED THE FREEDOM it gave her!!

She also had her VAN adapted and had toggles put in instead of using the steering wheel. She was VERY ADEPT at DRIVING!!!!!!!! It was TRULY AMAZING! She took me out for a little "spin" before she moved---she was better than most of the other drivers on the road, and I would NEVER have hesitated to drive with her again!!

Between her electric wheelchair and her van-conversion, she REALLY GOT AROUND, and even took LONG road trips EVERYWHERE!!

It might be something to discuss with your Doctor!!! It mght be PAID FOR by whatever medical insurance you have--your Doctor just needs to write a VERY comprehensive letter explaining and JUSTIFYING the medical necessity.
Might really be worth a try!

I look forward to your messages this weekend, RSD Kittie!!! Keep hanging in there!:D :hug: :grouphug:

Most Sincerely,

Brokenwings

P.S. The lady also had a SEATBELT for her electric chair!!!!! Kept her from falling out!!

I LOVE MY ELECTRIC WHEELCHAIR!!!!!! I have a compact scooter for trips out and an electric chair with the joystic controll for in the house. It is the compact for tight living conditions kind. I was extrememly fortunate because even with my insurance it was going to cost uss several thousand dollars. The chair is 8,000. The lady who helps with my housework knew a gentleman who had one. He got it from medicare but never used it because it went too fast and scared him. He told medicare to take it back and they told him throw it away!!! I was shocked that they wouldn't tell hm to donate it or something. It sat in his basement for 1 year. When my friend told them about me they gave it to me for free! What a humbling experience. My manual chair was too much on my hands. My scooter is a fold n go. I highly reccomend it. It is so portable! I got that at a yard sale for 125.00. Check Craigslist in your area. The free board often has them and the for sale boards do too. Don't give up.
Also, try not to let your old boyfriend get you down. I have never understood the concept of accepting that someone can't handle our condition. I dated a lot of guys who had that song. I found it pathetic really. You get what you get in this life. They could marry a marathon runner who is destined to be hit by a truck in the morning. You are not a disease and never feel like anyone is doing you a favor by "dealing with it". My husband is wonderful aand very supportive. I will always be bonded to him in a special way because he had children with me knowing my limitations. Is he a saint for that? No. DO I feel lucky that some one married me? No, I expected it. I am a good person and a great mother. I am not a condition or a disability and neither are you.The minute we start to feel lucky to be loved we start spiraling into dangerous territory. You are who you are, we get what we get, we all deserve companionship and love. You will find it if you expect it from people. Hang in there soldier!

I just want to add 1 thing -

NEVER GIVE UP HOPE of getting better - it is possible - miracles do happen:D

Lisa

Hi,

Hope is the one thing that has kept me going. Hang in their, Roz

I just wanted to say...You guys are awesome!!!!

RSDKITTI
You have an amazing group of friends here.
Take care and i hope and pray you can find some peace soon.
:hug:

Hugs For You
 

I'm sorry you are going through such a rough time.
Sometimes when words don't help, a hug, or a friend just
sitting there with you helps.
You have my prayers that soon you'll be feeling "up" and full of hope
for the future - it is there for the asking........
There's something in a simple hug
That always warms the heart,
It welcomes us back home
And makes it easier to part.
A hug's a way to share the joy
And the sad times we go through,
Or just a way for friends to say,
"I like you 'cause you're you!"


It's funny how a little hug
Makes everyone feel good -
In every place and language,
It's always understood.
Hugs don't need new equipment,
Special batteries, or parts -
Just open up your arms
And open up your hearts!

Have A Fantastic Day!

:grouphug: A hug is the perfect way to show someone WE CARE when we cannot find the words to say :)

:hug: Hope (HopeLivesHere)

HopeLivesHere
 

Thank you so much for the wonderful poem. Its so hard when there is no one here a mom a dad a brother a special one to share you life with or phtscial friends but I have my teen age son. Thats it but for all of YOU GUYS HERE and I cant say enough to any of you. It was really weird tonight every night but to night my son came into my room a kissed me on my forehea it doesnt hurt there but he HUGED me DIFFERENTLY and TIGHT and NOT LIKE HE WAS AFERID TO MAYBE HURT ME and it was great I didnt say anything BUT THE WAY HE SAID I LOVE YOU MOM WAS ALSO DIFFERENT SO maybe he just knew I needed it really bad and differently tonight so you are right your poem Im still not in a good place but MY SON REACHING OUT TO ME WITHOUT BEING SCARED TO HURT ME IT WAS GREAT !!!!!!!!!!!!! IM still having so much pain body and heart. but everyone here is here and my son is and has always been here maybe he needed it so when I gave it back to him it helped me to..............THANK YOU..........................EVERYONE............A ND IM STILL HERE................Karen

Karen,

Even at the darkest hour, your son is reaching out to you! I am sure that he feels helpless and frustrated that he doesn't know how to help. Open communication will be key for your relationship to flourish, remember that he can't help without being asked and told how. Reach out to him, yes, he is the child, but he can also be the greatest source of strength. I remember when I first had RSD symptoms (but was not diagnosed), my son was very young - 6 years old and he did not understand why "Mommy" was crying a lot, dropping dishes and going crazy in pain. I sat him down and said "Honey, you know Mommy had an accident, and I just need you to be a big boy and help me" his response - "Mommy, I will take care of you". He did, when I would collapse in pain on the couch, he would cover me up with a blanket and curl next to me, he would say "Drink tea, it helps" that always made me laugh. I had no other man in my life, he was it, but through him, I saw the kind of man I wanted. Kind, generous, loving and most of all someone to simply accept!

Hang in there, smile, talk to your son and remember that love comes in all forms! I am also adding a story that has been a favorite of mine for a long time.

Once upon a time, there was an island where all the feelings lived. Happiness, Sadness, Knowledge and all the others, including Love. One day, it was announced to the feelings that the island would sink, so they all got their boats ready and left. Love was the only one who stayed back. When Love was almost sinking, he decided to ask for help.
Richness was passing by Love in a beautiful boat. Love said, ''Richness, can you take me with you?'' Richness answered, ''No, I can't. There is a lot of gold and silver in my boat. There is no place here for you.''
Love decided to ask Vanity who was also passing by, ''Vanity, please help me.'' ''I can't help you Love. You are all wet and can probably damage my boat,'' answered Vanity.
Sadness was close by so Love asked for help. ''Sadness, let me go with you.'' ''Oh...Love, I am so sad that I prefer to go alone!''
Happiness passed by Love too, but she was so happy that she did not listen when Love called her!
Suddenly, there was a voice, ''Come Love, I will take you.'' It was an elder. Love became so happy that he even forgot to ask the elder her name. When they arrived in dry land, the elder went her way.
Love asked Knowledge, another elder, the name of the person who had helped him.
"It was Time,'' answered Knowledge.
''Time? But why did Time help me?'' asked Love.
''Because only Time is capable of understanding how great Love is,'' replied Knowledge.
:grouphug:

septmystic
 

septmstic, Thank you I'm going to keep this story if you dont mind I cried so much when I read what you wrote me.You are an angle that I need. They are thinking of putting a feeding tub in my stomach.I had a feeding line for 5 yrs after the drs cut my small intesent (stomach)when at 27 had to have a hysterecomy when my son was 2 and I was going through my 1st devorce the dr wanted me to do it at 18 but I kept saying no if I did after trying 3 yrs and giving up I was pergent. After I had surgery and I got sicker the dr said you problay have an UTInvection but I knew there was something very wrong because of my training he the suergion said go home and go to bed later I asked a guy I was dating to take me to the hosptial which is right up street I got to the hosptial about 5 hours after seeing the dr and after having no fever when I saw that dr and by the time I had 106 and alot of lab work and test in th ER that dr asked how did I get here I told him he said if I listen and went to bed I would of died and 2 days later with no help with meds and then egg shape then saw in me they throught I never had sugery in two days it was a size of a canopalop they told my mom to get my son because I probley wasnt coming off the table alive I heard that and my son was 2 yrs old and I wasnt going to let his father raise him I was in ICU for 10 days and they had to take some of small stomach so I was on feedind tubs in my chest in the big vain but I had to stop because on invections and about 12 tubs and almost dieing 3 different times and in 1998 on my birthday I was home the newt day I stoped breathing and ended on a vent for a few days the point to this is the dr said I cant do the tub in my stomach but I cant do the tub in my vain that stops right inch uppove your heart she said they are better you can control the 14 hour drip because my weight is so low and my UI tract Im losing control I cant feel my bldder anymore for the last 5 months I finally asked her between the feeding problem and RSDwhats doing to get me she put her head down and said with a tier in her eyes I dont know I always said that I didnt want to know when because they even UCLA was tring to tell me how long because without the feeding tub they said I wouldnt be able to last I have because of me and my son and family meeting special people and I havent had tubs for about 7 yrs they had to try about 2 1/2 yrs but the RSD is to bad so that didnt work and Ive been trying so hard but im lsing I finally asked her how long does she think she put her head down my dr and said Im sorry I dont know she knows that I know because I would never asked and she just tried to hold it together the dr and this time I asked my mom to go and she did and I told her I wanted her to stay because I needed to talk to her about my sons birthday so she did can to heard what my dr said and she had tears in my moms eyes so Im not giving up Im still fighting Im just really ready Im just so tired of fighting but I have to and I do want to sometimes keep fighting but I am Im just so tired my body is so tired and for the first time in years I know my mom heared me say Im tired and I need to sleep and in a moms voice she understand and I have every right to need to just sleep but not give up I said Im just in so much pain and 100lbs and my body is tired I see my pain specialst Thuresday so I will let very one of you know. I am going to see my surgon to get a date for the removal of tissue inside my stomach from a pump it has gotten so bad plus talk about the stomach feeding tub. Thank you so much for your caring loving letter I hope we can keep in touch close. Gentle Hugs karen I hope this made sence Im very weck and tired. Take Care of yourself. I am here if you need anything also I will always do me best..................

Karen -

Your story is heartwrenching and I wish I could offer more than a shoulder, but I am no angel. I am simply a woman who cares for others, always have. I lose parts of my pain through concentrating on others. Though the tiredness make take your fight, the fear take your breathe, the pain seize your soul, there will always be the sun to come touch your cheek when the darkness seems the worst. You are not alone.

Please feel free to send private messages at any time.
:hug: