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Old 10-17-2009, 12:47 PM   #211
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Hi everyone! YooperMom directed me to you guys! I was diagnosed with Fibro and OA yesterday- the doc also ordered blood work for RA and Lupus.

Any info you guys could give me is MUCH appreciated!
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Old 10-17-2009, 11:42 PM   #212
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Hi everyone! YooperMom directed me to you guys! I was diagnosed with Fibro and OA yesterday- the doc also ordered blood work for RA and Lupus.

Any info you guys could give me is MUCH appreciated!
Loreli so glad you found us!!! Living with Fibro is a very long learning process. I have been living with it for more than 15 years and I still am learning news ways to manage it and the possible causes for my illness. If you look at all of the posts on this thread you will find that is true for all of us. But you are definitely in the right place. I have found this board much more positive than other sites. Maybe its the pixie dust!

Since Fibromyalgia and Chronic fatigue syndrome are both diagnosis giving when everything else is ruled out it means lots of tests. If you think you will need to leave work for disability payments do whatever testing they need first. Besides the medical testing you may want to have cognitive testing done if you have a decreased ability to concentrate over time. I chose to have this test taken in the first year to prove my cognitive limitations.

Your first priority needs to be to get stable and if that means out of work or modifying work then try not to fight it. You can always return to work but if you fight leaving (as I did) you will get much worse much faster. This is a time when you need to put yourself 100% first for awhile. I'm afriad that is something I dont do very well! Some of the things you may want to rule out are MS, Lyme disease, thyroid issues, allergies. I'm sure some of the other posters can suggest several others.


You may want to keep a journal of your symptoms, what the weather was like, food you ate, activities, medication and supplements etc. It is very important that you learn how your body and your illnesses are effected by everything. While FMS and CFIDS patients have similar symptoms i.e. headaches, Pain, fatigue etc. we all express's them in very unique ways with very unique triggers so you will know your body better than anyone ..especially Dr's. If something doesn't feel right then its not right.

I would advise you to be careful of medications many of us are very sensitive to medications. I need to start at very low dosages and work my way up. I was tried on more that 20 medications my first year as the Dr's wanted to "fix me" with every visit . This was a huge mistake and made me much, much sicker. Try whatever makes sense to you but remember your body no longer likes changes. So try or add new things cautiously. Many Dr's are in such a hurry to make you feel better that they make you worse. That is true for physical therapy too. Constantly having new goals will usually backfire as eventually you will push too far and Crash. If you go back through all our posts you will find many medications, exersizes, suppliments,diets etc that we have tried with varried success and failure. I just learned of a new medication for me the other night!

Finally be patient with your self and have a sense of humor. Every day will be an adventure! I never know what life is going to throw at me from day to day so I have learned to be very flexible and grab life whenever it is in front of me. Having a good day? Try to go to the park and not do the laundry. Know what is important to you and do that first you will only have so many energy dollars each day. Do you want to spend them meeting an obligation you do not enjoy or doing something fun with your loved ones? Do you really need to do that medical test this week knowing you will be too tired to go to that party or can it wait one more week? The medical stuff literally ate up all my functional time the first two years. I was desperate to find an answer and the Dr's were throwing everything known to man at me. The result? The first two years were hard and when I said "stop!! "Things improved greatly. If you can learn the art of saying no and "maybe later" then you will have a much more productive and happy life with fibromyalgia. Fibro can be a blessing in disguise. I was a true A personality (still am) but the fibro has forced me to say no to things I would have felt compelled to do and to look at my life and find the joy and true priorities

I know this illness can be scary and very debilitating at times. If you know your body and know what you want to accomplish you will control the Fibro it will not control you. Oh and ask us lost of questions and vent away here as much as you like!!! Its very freeing to complain without pressure to feel better.

Sending Painfree vibes and Pixie dust To ALL!!
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Old 10-18-2009, 12:05 AM   #213
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Hi everybody!
Long time no see I have just gotten back from WDW and I want to tell you it was glorious! I truly think the weather has a lot to do with it. As long as I took it easy and did not try to do rope drop I was good.

Now that I am back into the same old grind I am finding my symptoms getting worse. I have decided to go off my meds and be "plain" again to find out what's going on with me. I am dropping the cymbalta, pain meds, and all that. I am just taking my ulcer meds and see where I land.

I slept all day today and it felt good, well while I was doing it, now all the stuff I was supposed to do is still undone but that's ok. I have to go to work tomorrow to prep for a staff meeting I forgot about (doh!) but I think I will be there by myself which won't be stressful.

I also wanted to touch base regarding my sleep test. I do have mild apnea but I have MAJOR PMMD (periodic muscle movement disorder) I never heard of that before! It's not restless leg but I guess groups of muscles that like to scrunch up and prevent me from hitting REM> I have ZERO REM sleep. No wonder why I am always tired! It said I had PMMD every 15-20 seconds. I guess my muscles like to move around even when I don't want them to...

My pain has been manageable since I decided to go off of it all - I have been trying to sleep and have a Dr. appt soon to talk about the PMMD and the CPAP peeps are coming to show me the new machine. I am not looking forward to that but it helps me sleep I think I could manage the pain better.

I hope everyone is doing well!
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Old 10-18-2009, 12:34 AM   #214
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Hi everybody!
Long time no see I have just gotten back from WDW and I want to tell you it was glorious! I truly think the weather has a lot to do with it. As long as I took it easy and did not try to do rope drop I was good.

Now that I am back into the same old grind I am finding my symptoms getting worse. I have decided to go off my meds and be "plain" again to find out what's going on with me. I am dropping the cymbalta, pain meds, and all that. I am just taking my ulcer meds and see where I land.

I slept all day today and it felt good, well while I was doing it, now all the stuff I was supposed to do is still undone but that's ok. I have to go to work tomorrow to prep for a staff meeting I forgot about (doh!) but I think I will be there by myself which won't be stressful.

I also wanted to touch base regarding my sleep test. I do have mild apnea but I have MAJOR PMMD (periodic muscle movement disorder) I never heard of that before! It's not restless leg but I guess groups of muscles that like to scrunch up and prevent me from hitting REM> I have ZERO REM sleep. No wonder why I am always tired! It said I had PMMD every 15-20 seconds. I guess my muscles like to move around even when I don't want them to...

My pain has been manageable since I decided to go off of it all - I have been trying to sleep and have a Dr. appt soon to talk about the PMMD and the CPAP peeps are coming to show me the new machine. I am not looking forward to that but it helps me sleep I think I could manage the pain better.

I hope everyone is doing well!

Glad you had a great trip!! Its a bummer when you have a great trip and have to comback to realityI have never heard of PMMD before either. It definately sounds like a possible reason for what many of us go through to sleep at night Thanks for the update!

Loreli , just saw you on another posting and noticed you are a pediatric nurse. Its amazing how many of us on this thread have a medical or psychiatric backgroud,or in my case both. I was a nursing tech for ten years mostly while getting my psych degree. then worked in a Childrens pysch hospital and community mental health. I liked the med stuff so much I still temped on the side for extra income. Our OP Toocheri is a nurse and bright eyes is in social service in Canada and I know I'm missing somone. Hopefully I didnt just have a brain hiccup and get something wrong.
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Old 10-18-2009, 09:21 PM   #215
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Glad you had a great trip!! Its a bummer when you have a great trip and have to comback to realityI have never heard of PMMD before either. It definately sounds like a possible reason for what many of us go through to sleep at night Thanks for the update!

Loreli , just saw you on another posting and noticed you are a pediatric nurse. Its amazing how many of us on this thread have a medical or psychiatric backgroud,or in my case both. I was a nursing tech for ten years mostly while getting my psych degree. then worked in a Childrens pysch hospital and community mental health. I liked the med stuff so much I still temped on the side for extra income. Our OP Toocheri is a nurse and bright eyes is in social service in Canada and I know I'm missing somone. Hopefully I didnt just have a brain hiccup and get something wrong.
you didn't forget me, but I'm a nurse too (I've been home w/ my kids w/ special needs for 8 years, but am trying to find work.) My former niche was in Hospice.
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Old 10-19-2009, 04:16 PM   #216
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And me, former ER nurse, now living a new life a full time mom and part time humanities professor!
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Old 10-19-2009, 08:38 PM   #217
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you didn't forget me, but I'm a nurse too (I've been home w/ my kids w/ special needs for 8 years, but am trying to find work.) My former niche was in Hospice.
Yep it was you I had forgotten. I remember reading it when you were discussing job prospects add Momelie to the bunch that makes six of us at least. (hi Momelie) Maybe they should do a study on professional backgrounds it may make the viral theroy look more likely. Lord knows the things I was exposed to in the hospital all those years. They never figured out why my toxoplasmosis levels were literaly off the charts and still extreamly high but at least mesurable after treatment and 15 yrs.

Pain free vibes and Pixie dust to all!
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Old 10-19-2009, 08:40 PM   #218
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Even more ironic, in my first year of school I did a psych research paper on if fibro was real or imagined.

At the time, I had only begun to have my symptoms, so dr. were thinking more lupus at the time.

Anyway, having never done a research paper before, my proof was weak, I was only going to focus on the effects that lyrica and neurontin had in clinical trials. In my paper I had mentioned that sleep issues play a part in symptoms of Fibro and I found a study that showed that subjects that were deprived of REM sleep showed symptoms of Fibromyalgia.

Ironically, at that time, my sleep was becoming next to impossible. I would only sleep for one hour, awake for one, sleep for one, awake for one, I was exhausted. Fast forward two years later, and here I am, had a sleep study which showed no REM sleep, diagnosed with Fibro, and on lyrica. Go figure.

Even funnier, I did another paper on bipolar, and that self awareness is a key factor in leading a better quality of life. My mother asked to read my paper - I said no way --- SHE IS BIPOLAR and displays no self awareness.

Stephanie
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Old 10-19-2009, 08:52 PM   #219
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And me, former ER nurse, now living a new life a full time mom and part time humanities professor!
My DH working on PHD to become Proff. His teaching is so much less stressful than mental health. I know he will miss the adreniline moments, I know I did, but it will be nice to settle down. A career servie firm just rated professor in the top 5 least stressful jobs. We hope so Congrats on the career change
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Old 10-19-2009, 09:04 PM   #220
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Even more ironic, in my first year of school I did a psych research paper on if fibro was real or imagined.

At the time, I had only begun to have my symptoms, so dr. were thinking more lupus at the time.

Anyway, having never done a research paper before, my proof was weak, I was only going to focus on the effects that lyrica and neurontin had in clinical trials. In my paper I had mentioned that sleep issues play a part in symptoms of Fibro and I found a study that showed that subjects that were deprived of REM sleep showed symptoms of Fibromyalgia.

Ironically, at that time, my sleep was becoming next to impossible. I would only sleep for one hour, awake for one, sleep for one, awake for one, I was exhausted. Fast forward two years later, and here I am, had a sleep study which showed no REM sleep, diagnosed with Fibro, and on lyrica. Go figure.

Even funnier, I did another paper on bipolar, and that self awareness is a key factor in leading a better quality of life. My mother asked to read my paper - I said no way --- SHE IS BIPOLAR and displays no self awareness.

Stephanie

LOL on DM my mother has no awarness skills and hates for anyone to be happy. When we went to WDW I called and left a message on her phone the day we left and said we would not be answering our phones because DH surprised me with a little trip. We gave her no details because she would have said something to try to ruin it.Truely a misery loves company kind of gal. We all call her Eyeore and she doesnt mind or get it . You have my sympathies

Looks like two years ago your self concious was trying to tell you something. Wish mine had I was completely in denile until the day I was put out of work. Hope you are feeling a little less overwhelmed this week. My DH took two days in a hotel and SEEMS to have chilled a bit. He cant wait for Dec. 16th!
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Old 10-19-2009, 09:06 PM   #221
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My DH working on PHD to become Proff. His teaching is so much less stressful than mental health. I know he will miss the adreniline moments, I know I did, but it will be nice to settle down. A career servie firm just rated professor in the top 5 least stressful jobs. We hope so Congrats on the career change
Not only less stressful, but just as valuable as being in mental health. I know my profs have made all the difference in the world during these three years I have been in school. What they have shown me and taught me have been invaluable and could not have imagined being where I am if it were not for them.

All of my profs are amazing, and I have learned all very different things from each.
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Old 10-19-2009, 09:18 PM   #222
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LOL on DM my mother has no awarness skills and hates for anyone to be happy. When we went to WDW I called and left a message on her phone the day we left and said we would not be answering our phones because DH surprised me with a little trip. We gave her no details because she would have said something to try to ruin it.Truely a misery loves company kind of gal. We all call her Eyeore and she doesnt mind or get it . You have my sympathies

Looks like two years ago your self concious was trying to tell you something. Wish mine had I was completely in denile until the day I was put out of work. Hope you are feeling a little less overwhelmed this week. My DH took two days in a hotel and SEEMS to have chilled a bit. He cant wait for Dec. 16th!
Dec 16th is my freedom day too. I cannot wait. Last Christmas me and DS went to WDW. It was the best t hing ever but so tiring to go back to school. I did not tell my mom we went as she misses me so much, but I finally told her and hoped that she would understand that me and my DS needed to have a visit to WDW> I think she understood. I may go and visit her this summer if finances allow. I have not seen her for 7 years. The average is 5 but last visit was very very stressful for both my DS and me.

This break, I plan on doing nothing, excpet cleaning my house.

Growing up, I used to think my mom was just bitter and miserable but the last ten years, she has steadily declined and it was very clear that she was very ill. While I love my mom, it is very hard to deal with her, but I don't see her often as she is in British Columbia and I am in Ontario. That is a blessing in some ways, though, as it would be very difficult to have her so near me. Her state has been better in the last year as she is in an open home type setting that is monitored by nurses and she sees her dr regularly, so I should go while she is doing fairly well.

My friends think I should go to Disney again though for my own sanity. It will be hard to see her, but I should go again. If my mother could deal with the crowds I wuold tell her to meet us at Disney.
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Old 10-19-2009, 11:16 PM   #223
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Dec 16th is my freedom day too. I cannot wait. Last Christmas me and DS went to WDW. It was the best t hing ever but so tiring to go back to school. I did not tell my mom we went as she misses me so much, but I finally told her and hoped that she would understand that me and my DS needed to have a visit to WDW> I think she understood. I may go and visit her this summer if finances allow. I have not seen her for 7 years. The average is 5 but last visit was very very stressful for both my DS and me.
This break, I plan on doing nothing, excpet cleaning my house.

Growing up, I used to think my mom was just bitter and miserable but the last ten years, she has steadily declined and it was very clear that she was very ill. While I love my mom, it is very hard to deal with her, but I don't see her often as she is in British Columbia and I am in Ontario. That is a blessing in some ways, though, as it would be very difficult to have her so near me. Her state has been better in the last year as she is in an open home type setting that is monitored by nurses and she sees her dr regularly, so I should go while she is doing fairly well.

My friends think I should go to Disney again though for my own sanity. It will be hard to see her, but I should go again. If my mother could deal with the crowds I wuold tell her to meet us at Disney.
I know exactly what you mean. I need to go back too. It has been 7 years. After 42 years I'm learning to put myself and my DH and kids first so we will go back to WDW on this great deal and if we can go back in the summer. I have realized when I take them into consideration not only do I lose but so do my kids. LAst trip my oldest DD begged to come back even though we stayed at a beachhouse blocks from the ocean! Its sad but they have never put me first and it has only been the last few years that I realized that no matter what I do I cannot win their love. They are too self absorbed in a variety of ways. I had a conversation with my DF recently and he didn't remember that I managed to gradute from college in three years despite working full time, taking care of DH1 while he was sick, in remission, then dying from Hodgkins disease then leukemia. How do you not remember that your 20 something daughter was mature enough to do that literally all by herself?I'm not bashing my family they did the best they know how but I finally got "when people show you who they are believe them!"


My family has come here several times but I find that when they are on my turf their "issues" Dm, DF, DSM are much more manageable. When I go home there are three families all with very different and major disfunctions. Which was good in that as a kid I thought they were all nuts. I have my own and truely unique disfuctions to pass on to my kids! My family is much more lovable from a distance. I can enjoy a nice conversation and when it goes south find a diplomatic way to get off. Visiting is a lagistic (3 state) and emotional nightmare. Not good for FMS as you know.My trip to WDW was the first time I truely made a clean break without feeling guilty. It only too 41yrs and a husband with a Psych background to convince me it was OK I'm not took hard headed.

I'm with your friends go to Disney then to Mom's for long weekend. Ask yourself a year from now will she appreciate the time you sacrificed with DS? If yes see her first. If no WDW then quicke trip back home . I realize as our parents get older these decisions can have consequences but your sons not going to be home much longer either. For those of us who care about everone its a no win situation in the guilt department Thats MHO for what its worth.
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Old 10-20-2009, 12:04 AM   #224
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I know exactly what you mean. I need to go back too. It has been 7 years. After 42 years I'm learning to put myself and my DH and kids first so we will go back to WDW on this great deal and if we can go back in the summer. I have realized when I take them into consideration not only do I lose but so do my kids. LAst trip my oldest DD begged to come back even though we stayed at a beachhouse blocks from the ocean! Its sad but they have never put me first and it has only been the last few years that I realized that no matter what I do I cannot win their love. They are too self absorbed in a variety of ways. I had a conversation with my DF recently and he didn't remember that I managed to gradute from college in three years despite working full time, taking care of DH1 while he was sick, in remission, then dying from Hodgkins disease then leukemia. How do you not remember that your 20 something daughter was mature enough to do that literally all by herself?I'm not bashing my family they did the best they know how but I finally got "when people show you who they are believe them!"


My family has come here several times but I find that when they are on my turf their "issues" Dm, DF, DSM are much more manageable. When I go home there are three families all with very different and major disfunctions. Which was good in that as a kid I thought they were all nuts. I have my own and truely unique disfuctions to pass on to my kids! My family is much more lovable from a distance. I can enjoy a nice conversation and when it goes south find a diplomatic way to get off. Visiting is a lagistic (3 state) and emotional nightmare. Not good for FMS as you know.My trip to WDW was the first time I truely made a clean break without feeling guilty. It only too 41yrs and a husband with a Psych background to convince me it was OK I'm not took hard headed.

I'm with your friends go to Disney then to Mom's for long weekend. Ask yourself a year from now will she appreciate the time you sacrificed with DS? If yes see her first. If no WDW then quicke trip back home . I realize as our parents get older these decisions can have consequences but your sons not going to be home much longer either. For those of us who care about everone its a no win situation in the guilt department Thats MHO for what its worth.
I know, I totally know what you are saying. Yet, I feel that although everytime I go see my mother it brings back all her issues of being with my Dad. She resents the fact that he remarried and had kids and she never did. In all fairness to her, he was an *** to her, but in his defence he knew he could never make her happy. He was right, she is not happy, I believe that is what has caused her mental state to deteriorate to bi-polar.

Obviously there is more to it than that, but she is always the victim. And her bitterness comes back everytime I go see her. She does not see that I appreciate all she did for me. She raised me till I was 16 while my father was out partying. They separated when I was 5. But through her bitterness she does not see that I appreciate her, she thinks I idolize my father. Ha, my father refused to help me ever again financially if I went to Disney last year.

I told him, I do not know if I will be able to walk for much longer, or what is wrong with me, so I am going while my son and I can take advantage. He has always told me to wait for everything. Wait till my son gets older so I can date, wait till my son gets older to get a job, wait till I pay off college to go on vacation, wait wait, wait.

Now I am a 40 year old single mom who hasn't dated in many many years, cause I was always trying to better myself, always working. Now I feel like it's too late to find someone to get married, and I am sick. I was really worried when they t hought I had Lupus cause I thought what the hell did I wait for?? To get sick?? That is also what prompted me to go back to college, that I never did what I wanted to all along, cause I didn't have the courage.

SO I told my Dad, sorry you feel that way, I am not waiting any more. Don't help me ever again but just because I am a single mom, and not rich, does not mean I cannot go on vacation. Besides, I have not needed his help financially for years. My dad has a maid, house paid for, car paid for, and does not get my life. He never will. So I have not asked for his help since. and will not, even if my child and I are starving, I would not ask him for help. And my Dad says it is not my job to worry about my mom, but she is ill and I will always worry about her. But my grandma is there to help take care of her, but I don't know what will happen to my mom when she goes.

My mom understood why I went to Disney even though she misses me so much. Bless her. But she is at the other end of Canada, so it's not as easy to go for a weekend. I wish, then it would be no question, I would do Disney in a heartbeat. It's almost a quick Disney trip what it would cost me. And although it will be painful and stressful, I will try to go to Disney next year I hope or the year after.

Ahh...sorry for the long long vent, Now that you all now me very well, can you tell all that ticks me off. I say love your family, but live for yourself.

I think we all have similar stories, we all have fibro, not an easy thing. We have all had to adjust our lives accordingly. This has taught me though, don't wait till tomorrow to be happy or go on that vacation, etc etc cause tomorrow might never come. I think I would not have gone to Disney for a second time with my son, or gone back to college if I had not gotten sick. Do it today!!!

Stephanie
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Old 10-20-2009, 12:43 AM   #225
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Stephanie totally understand

As far as dating goes the good men who will stand by you appreciate a strong woman who keeps their sense of humor when they are down. One thing I will say about Education and Social work fields is that the men are much more open to what life throws in a woman's way. You will not need to be so focused on your son as these years pass and you know what you want. Perfect set up to meet Mr almost perfect
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