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Old 05-31-2013, 12:37 AM   #1771
tiggspring
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Quote:
Originally Posted by mommasita View Post
Thanks to you both...

I got some much needed sleep. I went to visit tonight with my DD, and stayed about 30 minutes, then it was time for a diaper change. She tells me she refused pysio, said she was in too much pain, and asked for more pain killers, and that they are threatening her with a home. Of course I said, you are not SICK.. You need pysio.. I am not going back for a while..

Today was a nice sunny day, and I sat out on "my" chair..LOL, and relaxed. I love the warmth and sun. It makes me feel better... My husband is trying and apologizing, but some things he said can't be that easily forgotten.. I will try as always..

I see my Dr Wednesday to see what we do with my shoulder. SO painful I tell you...

Thank you for the nice words on my son. It is hard because he hasn't been accepted to any colleges yet. He has a lot of issues with motor skills and is delayed. Hoping for the second round.. Otherwise he will take some courses at night (adult ed) and re-apply in January. My heart aches for him too because he tries so hard, and seeing all your friends with their plans can't be easy on him... This kid has been through a lot since birth.. It will all work out, I just have to believe.. We will celebrate his graduation, and I try to talk him up as much I can.

I hope everyone is doing ok, and thank you again for the advice and the comfort in knowing what great people you all are..
So Glad you had a better day.! You and your son have made it this far don't worry too much. My experience is that kids that have had difficulty but have had support and made it to graduation can do better than their peers in many ways. They know how to handle adversity, work around a problem and ask for help. He may not take the path of his peers but I bet he will be happier no matter where he lands.
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Old 06-02-2013, 11:21 PM   #1772
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Originally Posted by mommasita View Post
Hi all!

I think I am having a breakdown, some kind, some sort. I don't know.

My mother is still in the hospital. After leaving my front steps on Mother's Day because she couldn't make the stairs. She had a hip put in 5 years ago, and is majorly addicted to pain killers.. She is suicidal as well. For the first 3 days there she cried out that her stomach was the problem.. And ultrasound, an MRI at another hospital because she needed an open one, and there is no issue. I hate to sound mean, but she is at nearly 400 pounds, her husband (not my father) refuses to admit there is a food issue, pain killer issue.

He yelled at me on the phone saying he loves her, and there is nothing he won't due for her. I tried to say loving is not always saying YES. I love my children, and out of love must say no to certain things. He told me "it isn't my fault nobody at your house gives a ---- about you".. I was in tears. Says he will go over my head, as he is her husband, he goes over my head. They have her on a diet, he runs out for donuts every day. He just goes against anything, he won't say no to her EVER.

I have only been 4 times, and the hospital is 5 minutes away. I feel guilty, but I go there and she is higher than a kite. I suspect he supplements her morphine from home. If I say something, he will deny, and if they kick him out, I just physically can't nor can I mentally. She is refusing a rehab center. she has 12 bedsores now, she is in a diaper..

I am waiting on news for my torn rotator cuffs. My brain surgery I had done 3 years ago has come back full circle. I am on disability. I am exhausted.. My son is graduating HS in a few weeks.. I had a huge fight with my husband. I feel so alone in this. He hasn't come once. He says she isn't sick. I say that we don't always go for the patient, you go for me.. My sister has been MIA for about 7 years, so I have no siblings to speak to..My teens know, but I don't harp on it, they don't want to go. My daughter called her at 6pm, and my mother asked her what she was doing up so early. My daughter says "she is stoned, and I don't want to ever call her back".. Is that my fault that she knows? I don't know what to do..

Just an example. Yesterday she begged me for spaghetti, says she loves my sauce. So I made enough for the 2 of them, called and asked her husband to meet me in front to pick it up because I had to go pick up my daughter. I call and ask 4 hours later how it was. He asks if I was trying to kill her with my "spicy sauce".. I cried myself to sleep. I didn't want a thank you, I didn't change my sauce. I know hospital food sucks, and remember myself wanting things.. So the food is in the garbage she says.. Thanks but no thanks.. I said you know it isn't easy with my arm with big pots and that. Indifference on her, no reaction.. I realize it is the pills talking, but I am human, I am her daughter, and I don't know. I can't fly the coop like my sister, I just couldn't do it.

I saw my Psch dr today, and she said I have to take charge somewhere, that I am going down.. I try to eat, and I am hungry, but then I just can't.. Between running a house with 1 arm, Dr's appts, two teens, and my son's graduation in a few weeks, I just find I don't make time to go see her. I just don't want to, I come back ..And then the guilts sets in.. My husband did apologize tonight, and told me to start eating, but it isn't easy as that. I have morphine for my shoulder, and I almost never take it. I am afraid to become like my mother. Maybe my food issues too..

Gosh if this wasn't the longest rant ever. Sorry. It felt good just getting it out.. My best friend is on vacation in Cuba this week, and normally I would just babble on to her.. I know this is probably hard to read, sorry once again..
Quote:
Originally Posted by mommasita View Post
Thanks to you both...

I got some much needed sleep. I went to visit tonight with my DD, and stayed about 30 minutes, then it was time for a diaper change. She tells me she refused pysio, said she was in too much pain, and asked for more pain killers, and that they are threatening her with a home. Of course I said, you are not SICK.. You need pysio.. I am not going back for a while..

Today was a nice sunny day, and I sat out on "my" chair..LOL, and relaxed. I love the warmth and sun. It makes me feel better... My husband is trying and apologizing, but some things he said can't be that easily forgotten.. I will try as always..

I see my Dr Wednesday to see what we do with my shoulder. SO painful I tell you...

Thank you for the nice words on my son. It is hard because he hasn't been accepted to any colleges yet. He has a lot of issues with motor skills and is delayed. Hoping for the second round.. Otherwise he will take some courses at night (adult ed) and re-apply in January. My heart aches for him too because he tries so hard, and seeing all your friends with their plans can't be easy on him... This kid has been through a lot since birth.. It will all work out, I just have to believe.. We will celebrate his graduation, and I try to talk him up as much I can.

I hope everyone is doing ok, and thank you again for the advice and the comfort in knowing what great people you all are..
momma, I am so, so sorry for all that you've been through, and all that you're going through.

I have been thinking about you, and your son graduating. It seems like you have so much going on right now that is bringing you down. My DH is a good guy, but hasn't always "been there" for me every time I've needed him, in the way that I would've wanted.

As for your mom, I am so sorry about that. When we get mis-treated by a stranger that's bad enough, but when we get mis-treated by someone who is supposed to love us, that really hurts. Her husband sounds like an ungrateful louse who is simply enabling your mothers bad behaviour.

I hope that you and your DS can enjoy his graduation day. Is he very upset about not being accepted to college yet? Is there a back up plan that you both can come up with? I think you said something about him taking evening classes; maybe that'll be a good thing for me, as opposed to a full schedule, so he can take things easier. I know that full-time college was a disaster for my older DS, but younger DS just graduated and thrived at university. They're all different, and sometimes we have to change what we thought would be their paths in life.

Ok,I'm sorry I think I'm rambling now. Today I watched my 47 year old brother in law die. He was DS's younger brother. They removed life support and he was dead an hour and a half later. Not a pretty sight at all. He was at DS's graduation party just 3 weeks ago. We had no idea that he'd be dead 3 weeks later, including him. He was really in denial and should've seen a doctor years ago.

Anyway, I think of all of you often. I am so sorry that I don't post as often as I'd like to. My fibromyalgia pain is off the charts these last few weeks.
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Old 06-03-2013, 12:12 AM   #1773
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Quote:
Originally Posted by SeaSpray

momma, I am so, so sorry for all that you've been through, and all that you're going through.

I have been thinking about you, and your son graduating. It seems like you have so much going on right now that is bringing you down. My DH is a good guy, but hasn't always "been there" for me every time I've needed him, in the way that I would've wanted.

As for your mom, I am so sorry about that. When we get mis-treated by a stranger that's bad enough, but when we get mis-treated by someone who is supposed to love us, that really hurts. Her husband sounds like an ungrateful louse who is simply enabling your mothers bad behaviour.

I hope that you and your DS can enjoy his graduation day. Is he very upset about not being accepted to college yet? Is there a back up plan that you both can come up with? I think you said something about him taking evening classes; maybe that'll be a good thing for me, as opposed to a full schedule, so he can take things easier. I know that full-time college was a disaster for my older DS, but younger DS just graduated and thrived at university. They're all different, and sometimes we have to change what we thought would be their paths in life.

Ok,I'm sorry I think I'm rambling now. Today I watched my 47 year old brother in law die. He was DS's younger brother. They removed life support and he was dead an hour and a half later. Not a pretty sight at all. He was at DS's graduation party just 3 weeks ago. We had no idea that he'd be dead 3 weeks later, including him. He was really in denial and should've seen a doctor years ago.

Anyway, I think of all of you often. I am so sorry that I don't post as often as I'd like to. My fibromyalgia pain is off the charts these last few weeks.
Seaspray

I'm so sorry about you dbil. (((HUGS))) He was so young. I know how hard it is when someone you love is on life support you can't stand to see them suffer one more minute yet you don't want to say good bye. Never enough time even if you have been battling for years. You and your family have been through so much recently . If I remember correctly you are planning a trip. I hope it gives you a bit of a respite after all of this.

Thinking of you in PA
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Old 06-03-2013, 02:57 AM   #1774
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Seaspray I am so sorry. My thoughts and prayers to you and your family...

everyone. and Thank you
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Old 06-04-2013, 02:54 AM   #1775
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Seaspray, so sorry for your loss.
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Old 06-04-2013, 03:59 PM   #1776
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New here

Wanted to say hi, I was diagnosed with fibro recently, and we are headed to Disney in a few weeks, yeah! Anyway I felt good for a few weeks, now I am getting low grade fevers again and feeling achy, hoping to feel better by the trip
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Old 06-05-2013, 12:34 AM   #1777
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Originally Posted by deerez View Post
Wanted to say hi, I was diagnosed with fibro recently, and we are headed to Disney in a few weeks, yeah! Anyway I felt good for a few weeks, now I am getting low grade fevers again and feeling achy, hoping to feel better by the trip
... Fibro sucks, had to say it.. Sorry to hear..

I hope you have a great trip, not sure where you are, but maybe the heat will help? For myself, it does immensely.. I really fly with the weather. Sun and warmth just heats up and helps my aches and pains..

Try and not overdo it before you go. Rest up as much you can to enjoy it!! I know that is SO much easier said than done... Also, try and rest during the trip, even if it is in small stretches, and drink a lot of water.

I know you didn't ask for my 2 cents, just thought I would go ahead anyway.. Feel free to join in the convo...
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Old 06-05-2013, 12:24 PM   #1778
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Thanks, your right, I actually felt great when we had a few weeks of warm weather here in WI, now cold and rainy again, I dont think im coming home, we are actually go to the beach after Disney, siesta key
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Old 06-06-2013, 10:07 AM   #1779
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Had my fibro dx in 1999, but I think I was pretty much born with it. I've been fighting pain for as long as I can remember.

Anyway, in the last year the pain and lack of sleep have rendered my immunity system useless. i can't fight anything off...hence I've missed a TON of work. I hate to give in, but am thinking of applying for pension disablity (not ss disablity) so that I can still work some. Probably part time, hopefully with flexible hours. I hate giving in, but don't see another choice. Anyone else go a disablity route? Do you feel any better now?
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Old 06-06-2013, 04:11 PM   #1780
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Quote:
Originally Posted by deerez View Post
Wanted to say hi, I was diagnosed with fibro recently, and we are headed to Disney in a few weeks, yeah! Anyway I felt good for a few weeks, now I am getting low grade fevers again and feeling achy, hoping to feel better by the trip

Deerez,

Welcome!!

You wont find a better bunch of people than then we have here!

Hope you enjoy your trip. I always feel better there then crash after trip. If you don't use a scooter I highly recommend ridmax touring plans. It will really help you figure out your pacing and how to maximize your time. One of our other new members just joined and really liked how it prepared her for their trip. I agree with momma rest as much as possible before the trip I pack as much as a month before for our family of five. I posted a bunch of tips (pg 42) I used for me a my family so that I wouldn't need a scooter. Many here swear by them. For me part of the vacation is trying to be normal for a few days which requires lots of planning beforehand changing up my meds before and during trip. For example we divide the MK into two days and use the train at opening to get to back of park on the day we need to go to splash etc. I'm a slow walker so its faster to be on the first train back than it is to walk. Very pleasant in the am too. Showers both morning and night are a must! Keeps me from locking up.
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Old 06-06-2013, 04:39 PM   #1781
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Originally Posted by katrina1122 View Post
Had my fibro dx in 1999, but I think I was pretty much born with it. I've been fighting pain for as long as I can remember.

Anyway, in the last year the pain and lack of sleep have rendered my immunity system useless. i can't fight anything off...hence I've missed a TON of work. I hate to give in, but am thinking of applying for pension disablity (not ss disablity) so that I can still work some. Probably part time, hopefully with flexible hours. I hate giving in, but don't see another choice. Anyone else go a disablity route? Do you feel any better now?
Katrina,,

Welcome!

I was diagnosed in 1995. I cant believe I have lived like this for nearly 20 yrs! I too have immunity issues. Before hand sanitizer I literally got sick every time I left the house . Now being a bit of a germaphobe I do better. When we take a long car trip my kids spray their shoes with Lysol before getting back into the van. 16hrs in a van with 5 people in/out of restrooms is a lot of germs to get on pillows toys ect that land on the floor! It works though. I have never got an infection/cold going to WDW. We went during the flu epidemic in 2009 and my friend that went before us and a friend that went the week after us all got sick but we didnt. Kids thought it was crazy to Purell both before and after each ride/buffet but it worked

I have been on SSI from almost the beginning but I was bedridden for two yrs and it takes very little for me to end up in bed for a day or two at a time. I also have symptoms of chronic fatigue and get migraines several times a week and can go a month or more with daily migraines. Being on disability gave me the ability to get well enough to function most days without doing the er revolving door which is what kept happening when I tried for two years to work with FMS. I really waited too long though. By the time I gave in I crashed to the point I couldn't take showers without DH standing by to keep me from falling and when he want home the pain was so bad I crawled sometimes to get from room to room. SO I would say it is better to go for disability when you spend as much time trying to recover from work as you do working. Lets be honest that is most of us most of the time. We have never done a poll but I think it is about 50/50 disability and still working here. I cant even keep up with kids and household chores so working is out for me but I never stop thinking of ways to go back when I'm having a good run. My husband thinks I'm crazy but I hope someday I will find a way to work again. He would want me to stay home and enjoy my life because so much of it I have felt miserable isn't that sweet
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Old 06-06-2013, 04:42 PM   #1782
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Momma, Seaspray

How are you guys doing today?



Sending pain free vibes and pixie dust to all!
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Old 06-06-2013, 06:18 PM   #1783
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Quote:
Originally Posted by tiggspring View Post
Seaspray

I'm so sorry about you dbil. (((HUGS))) He was so young. I know how hard it is when someone you love is on life support you can't stand to see them suffer one more minute yet you don't want to say good bye. Never enough time even if you have been battling for years. You and your family have been through so much recently . If I remember correctly you are planning a trip. I hope it gives you a bit of a respite after all of this.

Thinking of you in PA
Quote:
Originally Posted by mommasita View Post
Seaspray I am so sorry. My thoughts and prayers to you and your family...

everyone. and Thank you
Quote:
Originally Posted by carrie6466 View Post
Seaspray, so sorry for your loss.
Thanks

Quote:
Originally Posted by deerez View Post
Wanted to say hi, I was diagnosed with fibro recently, and we are headed to Disney in a few weeks, yeah! Anyway I felt good for a few weeks, now I am getting low grade fevers again and feeling achy, hoping to feel better by the trip
I'm one of those people who've had to use a scooter for our WDW trips for the last several years. I hope you feel better by your trip!

Quote:
Originally Posted by katrina1122 View Post
Had my fibro dx in 1999, but I think I was pretty much born with it. I've been fighting pain for as long as I can remember.

Anyway, in the last year the pain and lack of sleep have rendered my immunity system useless. i can't fight anything off...hence I've missed a TON of work. I hate to give in, but am thinking of applying for pension disablity (not ss disablity) so that I can still work some. Probably part time, hopefully with flexible hours. I hate giving in, but don't see another choice. Anyone else go a disablity route? Do you feel any better now?
I've missed a lot of work the last few years; I was just given a verbal warning about attendance a couple of weeks ago. I think at some point I will have to consider seeing about disability, but for now, I'm still working, but only 25-30 hours a week.

Quote:
Originally Posted by tiggspring View Post
Momma, Seaspray

How are you guys doing today?



Sending pain free vibes and pixie dust to all!
I'm doing ok. DH and I went to the mall today because he needed a new suit to wear to his brother's memorial service this Saturday. His brother (who just died) borrowed his good suit a while back and never returned it. When we went through his clothes the other day we couldn't find the pants. So... DH needed a new suit.

So I had a doctor's appointment this morning with my primary care doctor. DH came with me and emphasized how bad my fatigue and pain are. I have 2 new prescriptions; one for Adderall (yes, the ADHD medication!) and Flexeril to take at bedtime. The doctor feels that the Adderall will help with my severe fatigue. I'm at the point where I will try anything so that I'm not sleeping my life away, other than when I'm at work.

DH asked the doctor if I would qualify for a placard for Disability Parking, and he said I do. He filled out the paperwork today and I'll mail it in to the state tomorrow. He listed fibromyalgia and rheumatoid arthritis as the reasons, and checked off the "permanent disability" box. I guess it's about time that I start to accept this.

Today is my day off, so I'm glad about that. Now to relax with the heating pad, and wait for dinner to arrive (garden salad and turkey sandwich). lol

P.S. The doctor told me that I need to exercise more, and lose some weight. My next appointment is in a month, I'd like to have lost some weight by then.
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Old 06-06-2013, 11:02 PM   #1784
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Seaspray,

Glad you are managing to plug along. I have been taking flexeril since I was first diagnosed although only it makes me crazy tired so its for emergancies (like a fall) or when ativan isn't working. I actually have had to use it for the past two days as my back inexplicably locked up for almost a week. I cut mine in half and use only at night. Slept 12 hrs last night awoke and it was Noon! So if you notice increase in fatigue most likely flexeril is cause. BTW what is adderal supposed to do? I don't think anyone here has tried that but it might help with fibro fog.

Hang in there
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Old 06-06-2013, 11:02 PM   #1785
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Hello everybody! Just got back from WDW last night so spent most of the day today sleeping. Haha. Everything hurts pretty bad but it was worth it! Had so much fun the last 4 days during my first WDW trip! Unfortunately there was a lot of rain and we didn't get to finish everything in Epcot I used a cane to get around (Which is why my wrists are killing me!) the parks and received some weird looks every once in a while. I went to city hall on our first day at the MK and got a guest assisstance pass. This allowed us to use the fastpass return on most of the rides so we ended up not waiting more than 30 minutes for any ride in any park. It was great :D Went through half a bottle of ibuprofen and about 1/4 of my vicodin. Haha. Not gonna lie... the alcohol helped too. Lol! Got a Grand Marnier Orange Slush at Epcot in Paris. It was tasty

Seaspray I am very sorry for your loss Before our trip one of my cousins passed away. It was a big surprise because he was only 47 and the family is taking it very hard.

Deerez Momma is right... Fibro sucks! But I hope you have a wonderful trip! How long will you be staying?

Wishing everyone a painfree day!
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