Because I am having severe mental problems right now. Not depressed, just got too much on my damn plate again.
I have a damn even more bummed right leg, not just my knee.
I want all my pain, stiffness and swelling to just all go on vacation for a while. I think I need to put them on a carribean cruise.
Money problems. I cannot help with them.
I feel ok, not too tired or runned down, but I still cannot do the things i need to do, because of my hip & right leg/knee.
My marriage is falling apart. Yes, people... my marriage is falling apart because I isolate myself and shut myself off from my husband. So, he has to go find what he needs some where else and from someone who is not in pain & have mobility problems all the time.
I am 28 years old and am disabled. Not what I wanted outta life. I wanna at least to be successful in something.
I am having a hard time dealing with all of my problems. I am tired of worrying over stuff and wondering when the day will be I get kicked to the curb by my husband.
I have tried soo hard to keep up with him, and do things he likes to do, and all that resulted in was me hurting more and a trip to the ER.
I just want to be normal. and walk like everyone else... not hunched over, and my knees actually bending and no straight legged walk. I want to be able to walk across the parking lot and not feel rushed by the cars waiting on me to get to the other side.
I want to be able to sign my daughters reading log and not cause her to get an 88 in reading because i did not sign it. It will be all my fault why she will not get an All A's trophy this year.
I want to be able to go to sleep and wake up without being in slow motion.
I want to just be NORMAL!
Joonie, as much as you may not want to admit it, that *IS* depression. And you CAN get help. I'm gonna keep saying it, until the day you finally get it through your head. No one has to feel this way. And there are things that you can do about your marriage. It's a two way street, and he needs to realize that a lot of this is just who you are. With good communication and maybe a little help, you two can find a way through this. THOUSANDS of people do. But you have to want it, I mean REALLY want it.
Look, if walking has become that insane of an ordeal, maybe you need a wheelchair. I mean, come on! Quality of life! You can do 99% of the same things with a wheelchair. For a lot of people it's the answer. Maybe it is for you. And if it's not, well maybe the idea, or the thought of it is the motivation you need to start being a complete doctor hound so you can get this stupid remicade thing taken care of.
At some point in your life Joonie, you're gonna HAVE to hit the wall and say "enough is enough" I'm still waiting to see that day, and I think deep down, so are you.
I am on anti-dressants! Nortriptylin 30mg everyday. I am not depressed, I am just angry & overwhelmed. I am angry at myself becuase I am not normal.
Yeah... wheelchair... so what my husband can push me around in it and be even more ashamed of me?
Ok so the word was not ashamed... it was to be "so he will have to do even more things for me?"If he's ashamed then he has issues that need to be dealt with.Joonie by being in a wheelchair you may find you can do more for yourself, as you're not worn out from trying to walk. Think about it.He did not say he was, but I am thinking if I were him, I would be.
And his issues are me. If it were not for me having JRA we would not have the money problems we have now. I would not have to be so dependant on him. I would be able to do what I want to do when I wanted to do it and not have any repercussions for doing what I done. IE swelling pain.
Yeah... I thought about it and no. Wouldn't that be called giving in? Am I just suppose to give in and let it continue to rule my life? I have given up so much already... I REFUSE to give up anymore of my drab life.
Ok... I am done... no more on the subjects at hand. I am entitled to be cranky, snipy or snappy.
I guess if I feel I am going to be an ass or even cranky... I just will not post. Sounds good to me.
And saying "his issues are me" isn't fair at all. It's still a two way street marriage. Did he not know you had this when you were married? There's a reason it says "for better or for worse" If he doesn't have the balls to deal with it and help you, you need to call him on it. Because that's just plain not fair. You know it, I know it, everyone else knows it. I'm just not sure anyone has the guts to say it.
No it's not giving it, its adapting. Everyone adapts, life changes all around you all the time. If you fail to adapt you miss out. Plain and simple.
Ummmm.... yeah... what the hell you think I have been doing since september... playing plinko?
I HAVE been trying to get better. DUH! I cannot help RD around me are complete morons! I cannot help that their staff are slackers! I cannot help anything that has gone on in my treatment wise.
I did make the big step to change RD's knowing it would burden others to get me back & forth. I cannot help I am just not as LUCKY as some. Ya... I know... it is probably my pessimestic attitude that makes my life that much more difficult. NOT!
It will be next month before I get Remicade.
As for the old tubby hubby... sure he knew... but he did not know it got this bad, heck neither did I.
It is not adapting. Giving up walking... is not adapting. Giving up baths is adapting. Giving up not brushing your hair is adapting. Giving up not being able to get in the floor to play with your kids is adapting. Giving up not being able to write is adapting. Giving up missing out on my son's baby years is adapting.
BUT giving up walking around freely is not adapting.
Joonie, you have the love and respect of alot of us in here for your courage of a lifetime. and one of the greatest attitudes and sense of humor on this entire board. You were defined by your illness at birth because your illness is you, an unfortunate turn of the wheel of fate for you. I wish I had a magic wand. But I do have the power of prayer, and I will pray every day that you get your wish and all the personal happiness, success, and love that ever human being craves, and also to be understood and get empathy, not pity. Come move to Florida, you can stay with me, I will take you on. Hold it, I forgot to have children, so that won't work :) Love you girlfriend, I admire you so much. Cathy PS Some men just cannot do the vow of in sickness part, its in a DNA gene, already built into their psyche. I plan on submitting a paper on it to the Rockefeller Institute. j/kGiving up running is adapting.
Doesn't matter "for better or for worse"
Does your pessimistic attitude make things worse? Probably. I'm not going to sugar coat any of this for you Joonie. It's not going to do you any good for me to be sweet sweet about it. Like I said, you really just need to hit that wall where you just can't take it anymore, and you start taking TRUE control.
Do you call that office EVERYDAY to see if they've processed your infusion? No, you let them meander around. Sometimes, you have to be annoying. This is the only body you have, you CAN'T leave it in other people's hands. Would they have processed any faster if you'd called every day? Probably. It's the persistant(sp) people in life that get what they need, when they need it.
It is adapting. You can get a set of wheels to get where you're going. You can still "go" You just do it a different way.
You go tell someone in a wheelchair that they're not adapting. That they are giving up. See what happens.
I admit he does more than I would expect him to do. But it does take a toll on him, and then my feelings get hurt because I know he is mad at me for being the way I am. I do not want to be dependant on him. I want to go back to the way I was before, at least at that pint and time I could do a whole lot more than I could do now, and was not dependant on hubby for everyday tasks. I done them myself. I actually contributed to the household. I might not have washed dishes, but i did do so much more than I can do now.
You know it is bad when your own MIL comes over and cleans the house for you, washes a load of laundry, and the dishes. Yeah... just think before 3 years ago, she claimed I was lazy... and that was because I would not wash dishes. I had to give up washing dishes to adapt.
I called the insurnace company to find out how to speed the process along... she told me to tell them to make sure the form was filled out right. I called told the lady that and she said "I am sure she filled it out right, she does this all the time." I get a call back by the billing lady stating that she had to send more information in.
It is always stupid sh*t like that, that goes wrong. Nothing I can do about it, it is stuff THEY have to do on their part. What am I to go discruntal put a gun to the billing ladys head to get my stuff sent off right the first time?
He is not very open. I communicate, but his end is jammed up with ear wax I guess.
He does not like to talk nor listen. But he has gotten better. Half the time when I am talking to him I am not even sure he heard a thing I said.
A normal convo with my hubby, now this is to anyone, is "um-hum" and lots of Hummms... and an occassional response.
Marriage is already in hell. It is just waiting for the straw to break it.
Well, then sit there and bitch about how you hurt to walk, but it's not going to get you anywhere, or anything. Except eventually alone and sad.
I'm tired of arguing with you over your doctors. You make it very clear that no matter what anyone says, we're all wrong and they are just sh*tty sh*tty sh*tty and there is NOTHING you could ever possibly do to aid yourself in that department. So be it. But you sure seem to be the only one around here in those shoes. Seems odd to me.
Call me a bitch if you want, but I can't stand seeing people dig themselves further and further, and quite frankly thats all I'm seeing here.
I see post after post from you that is just a scream for help, and every time I reach my hand out, you snatch yours back and walk away to dig your hole a little farther. I started out nice, and then strong and motherly, and I've really just reached the I don't care I'm just going to lay it out there stage.
Over a year now I've watched you dig more and more Joonie, and you can deny that till the cows come home but one day you HAVE TO HIT THAT WALL AND SAY ENOUGH IS ENOUGH!!!
I'll sure be here when ya do, it's what good friends do.
Yeah... you are independant you do not have to take anyone else into consideration. You can go to any dr you want, because you are going to drive yourself there, and leave your babies at home to watch themselves. I unfortunatly do not have that life.
I do call. I have called. I will call again tomorrow like they asked. I am not pushy. Besides this month I cannot afford to pay for my RD visit, so... better off it will be next month.
< =text/>_popupControl();Well, life is really what you make of it. If your husband is crabbing that he has to do one more thing for you by pushing you around in a wheel chair then he has some issues he has to deal with. You can help him deal with those issues with a lot of positive communication and understanding that he is most likely frustrated with your health condition also. Frustration in men comes out as anger and they tend to say really hurtful and mean things that they really do not mean. He could also be possibly depressed over the whole situation also. Depression in men...comes out as anger. It took an incredible amount of patience and understanding on my part when we were dealing with Danny's depression before he got medicated.
Have you thought about doing some websites on the side? You are pretty talented with that and could make some extra money with that. Advertise on craigslist. It's free!!
How emotionally supportive are you to your spouse? There is more to life than the physical relationship of a marriage. That physical part has its ups and downs for couples that are not dealing with a chronic illness. Couples that have a chronic illness in their relationship deal with that a little more. I find the more emotionally open I am with my spouse, the not having the physical part as much as we like it does not matter. As long as we know we are there for each other emotionally all is ok. Most spouses look for something else when they are not being given what they need emotionally. Even when I was depressed last year and needed an anti depressant for a little bit, I still manage to take care of my spouses emotional needs and wants. It actually made me feel better about me to do that because I realized wow...I am needed despite this RA crap. I really do have something to give to someone.
I really do not care what people think of me if I am being pushed around in a wheel chair or riding the electric scooters. I have found that people really just ignore it because in this day and age it is really stressed about being handi capable instead of handi capped. We have figured out ways to work around my mobility issues. So our hiking trips are not as long as they used to be. So when I do venture out to the mall, he has to push my behind in the wheelchair. That just mean to me I have a chauffer and I can enjoy the mall and sight see without worrying about knocking into someone as my klutzy behind is prone to do since the butterfly always gets me lol. I have mucho fun zipping around Walmart on the electric scooters and honking at people that are too stupid to get out of my way. The girls have a great time with it too. We put stuff in our basket on the scooter and then sneak it into the big basket Danny is pushing and he is never the wiser lol. He never notices til we get home and he is unpacking and scratching his head going…I don’t remember putting this in the basket. And then he turns around and us girls are grinning like the Cheshire Cat lol.
We have had to adapt a lot in our lives as our marriage and life have gone on. We are going to get me a bar stool so I can do dishes and I can clean the kitchen. I do a little at a time. If I have to take a break in the middle of dishes, I sit down and take a break. If I can’t clean the entire bathroom in one shot, I do a little and get the rest of it the next day. Granted I have the minions to help me out, but I don’t want to burden them with too much as they need a life too. But they still have their regular chores to do so they learn to be responsible people.
Life really is what you make of it. Life really is about choices. Life really is meant to be lived with quality. And if quality means a wheel chair or a scooter, then that is what it means. If quality means a bar stool to do dishes, then that is what it means. If quality means have deep meaningful communication and discussions with my spouse, then that is what it means. If it means fighting every single day of my life for quality of life then that is what it means. My fight for quality of life is not just because I have a spouse and children…I fight for quality of life for me too. I deserve it like everyone else in the world deserves it. I will fight with everything I have until I take my last breath to have quality of life. My bed is in my living room so that I have quality of life. How normal is that? I will tell you how normal that is. Very normal for us. What is normal for one person may not be the normal for another. I am normal. You are normal…we all are normal. Because you can not define what normal is. My life is the normal life for me and my family. Katie’s life is normal for her and her family. Your life is normal for you and your family. Get what I am saying here?
Make that choice Joon to pull yourself up by your bootstraps and have a good life for YOU. Once Joon is happy with Joon, everything else will fall into place. And that goes for everyone no matter if they have a chronic illness or not. Yes, it might take an anti depressant for a while. There is no shame in that. In fact my macho husband will BRAG and shout from the rooftops just exactly what being on anti depressant has done for him and his life.
All any of us here want for you and for everyone else here is for you and everyone else to be happy with themselves no matter what it takes. Like I said…once you are happy with you…everything else falls into place.
You failed to address ANYTHING else I said.
I'd like to see you do that for once. Address EVERYTHING I say, not just the parts that are easy.
HEY JOONIE I DON'T THINK IT IS EARWAX IT'S JUST LIKE A EXTRA SENSE US GUYS OUR BLESSED WITH AFTER WE GET MARRIEDLiz... explain exactly what emotional support for the tubby hubby would be?
Sure is the cheap way out Joonie. But that's my opinion.Joonie....I think it's good advice to follow, you know, to keep on bugging your doc to get your Remicade. They seem to have dropped the ball, I guess it's to you to pick it up and throw it at them
A stool for the kitchen, like Liz mentioned, is really helpful. I have a bar stool that I sit on when I'm chopping veggies or stirring pots or whatever and it makes a huge difference.
You still have your marriage, so its not too late to keep it. See if MIL would take the kids for a weekend and spend it with hubby, just the two of you. You don't have to do anything spectacular or expensive, just spend some quality time together. Do lots of talking (both of you).
You sound really angry with yourself as much as anything else, cut yourself some slack. This disease sucks big time. Have a rant. Get it out of your system. Do some adapting. Use the scooter at WalMart. Save your energy for things that count, your hubby and your kids.
See if your doctors offices have an email address, if they do, keep sending emails until you get what you want. Don't take it laying down. Get in their face either with email, mail, phone calls (when they answer jump right in and say "I'm calling long distance please don't put me on hold, I need someone to call me back right away regarding.........)
Can you take 2 AD's at the same time? Becuase the AD I am on is for my IC. Which is, I think, the only treatment for IC. Hey Joonie, well, there have been some good suggestions on this board
Oh yes, talk to hubby and i mean really talk to him, tell him your fears and if he still doesnt seem to hear you write him a long letter or email explaining everything , sometimes written words make more of an impact than verbal ones.
What is IC Joonie?Thanks for the advice everyone.
I am just in an angry, cranky stage right now. I am sure some of you have been like I am. I do not get this way often, but some events took place the last couple of weeks, that am I having a hard time dealing with and believing they ARE my fault. I try to do the best that I can, but sometimes, I just fall short, I always have. *shrugs shoulders* Interstitial cystitis (IC) is a chronic bladder problem that can cause pain and other symptoms. People with IC can have an inflamed and irritated bladder. Joonie, one really important thing you ARE doing for yourself is posting here. I was getting concerned when I saw the one where you said you were going to stay away from posting when you got cranky, and I was glad to see that you continued to post and work through the discussion. I can't add anything to the good advice you've gotten and I don't know your history very well. I just wanted to encourage you to keep venting here when you need to and don't worry about being cranky. We can take it. Hi Joonie, nice to meet you, I'm Jenna. I've been lurking on and off for quite awhile and remember reading many of your posts. I hope you are open to what others have written to you (particularly Katie) and are not just posting on here to hear "poor Joonie". You DO sound depressed, though clearly you don't want to be perceived that way. You sound hopeless, not just someone who is cranky and having a bad day. You have sounded depressed for as long as I have been reading this board, though I do notice you try to hide behind humor. You sound defeated at 28 and I'm not sure why. I counsel a large number of disabled people. I have found that those who are driven, upbeat and positive, are that way DESPITE what circumstances are going on in their lives. You may think that JRA/RA, etc is what is keeping you from having a successful, happy, full life, but it's not. That is your excuse for not being succesful, happy, etc. YOU are what is keeping you from those things Joonie. I have numerous women who are significantly handicapped with more obstacles in their lives than you can possibly imagine. What they DO have is perseverance. They have a fighting spirit. Each obstacle that comes their way is but a challenge that they find their way around, through or over.....and they move on. They refuse to dwell on what they CAN'T do, or what their disease has robbed them of - that would be a recipe for depression and disaster. They never focus on the obstacles, but rather on the next positive step they can face. Once you start compiling a list of why things are so bad for you, why they'll never work, how many obstacles are in your way, you've already lost the battle. You have given up at 28. I think you need to change your focus and look at what is holding you back. It's NOT your RA or any of the other things you may list. About your husband. You wrote: My marriage is falling apart. Yes, people... my marriage is falling apart because I isolate myself and shut myself off from my husband. So, he has to go find what he needs some where else and from someone who is not in pain & have mobility problems all the time. No joonie. He does not HAVE to go find someone who is not in pain, etc. I am not sure if you're saying he is cheating on you (which you seem to accept), but it does sound that way. Your husband does not sound like the prize catch you think he is. I know you post excuses for his behavior, try to minimize his behavior frequently and attempt to paint a picture of a wonderful man, but from what I have read, he certainly doesn't sound like a caring, empathetic husband. And for some reason you sound like you have put him on a pedastool, almost feeling UNWORTHY of this bum's love and affection. WHY? Because you have RA? That is no excuse to tolerate his behavior and I am sure that the women on here with healthy relationships will tell you that it's NOT just b/c he's a MAN! Normal, healthy, functioning men SUPPORT their partners, LISTEN to them and LOVE them for WHO THEY ARE. Your marriage DOES sound to be in desparate trouble, and I don't know that it is worth saving, based upon what you've shared over time. Your husband sounds like an immature, selfish brat who needs to grow up. I'm sure this comes across as very hard, but read through this and rather than combat all I have written with evidence about how none of this really pertains to you, how about listening closely with your heart and seeing if anything really deep down DOES pertain to you. You CAN be successful and happy Joonie. I would suggest finding someone who can help you get out of this negative life-mindset of yours and quit blaming the illness, circumstances, etc and start living a life worth living. edited to add.....what is the excuse behind you not signing your daughter's school calendar? Certainly there is a way to work around that. Is it a memory issue, or physically you can't sign? Certainly you could sign with an "x", if that is the issue (you are able to use a keyboard, so I assume you have fingers). If remembering is an issue, that's an excuse on your part. You don't have alzheimers, you have J/RA and fibro. You can have a note taped somewhere to remind you. As soon as daughter comes home from school each day, make it a habit to read her calender immediately and sign right then. Rather than use excuses, find solutions. Joonie, I am going to share some of the journey that hubby and I have been through just recently...and some things that helped us. First of all Nortryptaline or Amatryptiline is a Piss Poor antidepressant and is usually Rx for sleeping problem. You should be on Elmiron and Aderax for your IC, not Nortryptaline. Piss poor I tell ya! I am trying Effexor, because of the blockage of some of the pain response, and it helps...is not a cure, but helps. The suggestions about the scooter and the Doctor are good. YOU have allowed the Doctors office to call the shots....YOU need to start calling those shots. Like I said in my post earlier....I would call them every day, and have them return your phone call....say it is an emergency...and at this point it is. Also, report the treatment or threaten to report it to the Board of Physicians...you may not, but heck they don't want their meal ticket messed up. This is abuse...no, and I mean no doctor's office should be doing this. YOu have rights my dear friend rights! Ok...done with that. My hubby and I have had a rocky relationship all of our 19 yrs. I honestly believe that I had JPA, but my adopted family did not have money for treatment or dx. We were lucky to have a pair of shoes for school and one for Church. Our whole marriage I have had this symptom treated and that treated. I had to get cleaned out totally before conceiving our children, and it was hurry to get pregnant...so I wouldn't have to be cleaned again. So, as my adopted mom has pointed out...I have been sick most of our marriage and just dealt with the pain and fatigue for YEARS. Fast forward to last Sept. my dad dies at age 61, reading his diary was like reading a day in the life of me. Pain...colitis...etc...then in December...I slept almost through Christmas...I was in so much pain...I could hardly move. Well, the ortho surgeon keeps on my butt to get this Arthritis dx. I told him I had been there, well after four months finally someone says...gosh, this is what you have and we are behind the eight ball. Then add completely active(running five miles a day at 45) Military hubby. "suck it up and deal" hubby. The first thing the RD told him, is it is impossible to suck it up and deal. Last month I went through the same crisis that you are...I am no good...my kids, hubby, and puppies deserve more. He is detached and there is nothing I can do about it. I get the eye rolling, and I can't do it any more. (this is the short version) I told him, I am gone...broke my kids hearts. My son cried his eyes out and called me a coward. I found out he (hubby) did not want a divorce, and he really loved me a lot, but has his own stuff. We decided that number one, I need insurance and a comfortable place to live, and honestly I need him. We are still together...clawing our way back. Things have changed for us. I try to do as much as I can. He is not nagging. The biggest change is in the form of a book it is called the Five Love Languages, by Gary Chapman. We went through the test and my love language is totally different than his. Mine is gifts, and as he has found out....a little tin of chocolate truffles is worth a whole lot to me!!! I have also found out that his is words of affirmation....so telling him how great he is and how much I appreciate his help...well, let's say...it works wonders to melt the heart of my staunch Military Man!!! Is our marriage perfect...no...and we have 19 years of marriage to work through, but we will be together until one of us goes to our resting place. Now...Joonie...your mother in law doing dishes...BE THANKFUL you have her checking on you and helping you out! I have no one...we learned in all of this possible split...I have NO local girlfriends looking out for me. Jeff does...he has a great support system...including Church. I have my sometimes neurotic mother, and sometimes my adopted mother...all in different states. Be thankful for the fact that your hubby does love you a great deal, and that your mother in law is helping too. As far as your daughter...talk to the teacher...I excused kids all of the time for their reading calendar not being signed. I had parents that did not see it, so I would sign it. I would rather tell the teacher that I just physically cannot do this, rather than let them assume that she is just not responsible. This one is an easy one to solve. Know that I am here for you, and that I shared this, because I know where you are and you have to get out of it!!!! Man... I remember when I use to tell it like it was about my hubby and people would say I saw nothing positive about him, and now that I am trying to find the positives about him, I am putting him up on a pedastool. I agree he is a self-center, arrogant, childish, spoiled brat. You know how they say you really do not know someone until you have lived with them, well that is true in this case. I mean we get along, and we are all we have in the friend department. I wished we had friends, but we don't. I have been like this all of my life, the "depressed" person ya'll seem to say I am. I do not feel depressed. I do not blame my JRA for anything about how unsuccessful I am, or anything else. This is a new thing for me. I was like Katie and doing good until I had my daughter, I started to slowly go down hill after having her and then after having my son I got even worse. The worse I have ever been. I am not as bad as 3 years ago, but... I am still struggling with day to day tasks. I want to not depend on people, but I have to because I am not doing so well right now. I just want to go back to like I was and not be in pain every day. I still have not come to terms with being labled diabled by the state. I applied for disability because at the time we need more money as hubby lost his job and I figured they would deny me and I could at least feel like I tried to contribute to my family. At the same time with in the same week as applying for disability I even went and applied for a job, which I did not get. I know the lady that interviewed me took one look at how I could barely move and all. I know she realized I had some sort of mobility problems because she asked a few questions towards them. I do not hide behind humor, that is just how I think. Then ya wonder why hubby thinks I am a freaking nut. I do not even think half the stuff I post is funny, and if I do... I sure say it made me laugh. I have A LOT going on right now. I am just trying to not worry about any of it, because quite frankly most of it I can do nothing about. I cannot find hubby a better paying job, I cannot go to work, hopefully after remicade comes thru I can, I cannot make them keep FIL on at his job, I cannot please everyone and keep my house spotless. I have a lot going against me right now. I have to plan my medical around having a way to pay for it one month and not the next. I have to get others on board to take me where I need to go for treatment. I have a lot of things I have to take into consideration. It is just not me. Iam only a 1/3 of it, that is how I view it. Finding a way to the dr's, and someone to take care of my son. I might feel defeated right now... but ya know what. It is because I am. No one knows exactly how my life is. I do not really care to go into that aspect of it on open forum, but only a select few on this board know what I am really going thru right now. Sure be my own advocate... I am. I stopped going to an RD that was just going to let me suffer while on Humira. He had no intentions in helping me get better. He was just going to let me keep getting bladder infections and be in even more pain. He would not even help me with my swelling. I do not want anyone to pity me, or even feel sorry for me. Not my cup-o-tea. I just want to know if I have more going on with my body than JRA & fibro. I mean this fibro stuff is all new to me and some of this RA stuff is totally new to me. I admit I am having a hard time adjusting, but who does not. Some of this stuff is new to me just like it is new to everyone else on this board. The swelling not so new, the increased pain sure is. I never took pain meds before and now here I am popping them left & right so I am easy to get along with for my family. And to be able to keep up with them. You know what it is like to be the last person in the door? Or what it is like to have everyone wait on you because your are slow and a turtle can win the race? Or how about that you have to get someone to help you get into a standing position in public. Or your daughter says gee mom you are slow. Or when your face is so red from being tired from walking from the car to the front door and people just stare at you because you are breathing hard like you ran a marathon and yet you crept to where you were going. I really am having a hard time right now. I was doing so well while on Humira, and now it has been ripped away from me and I have to wait for my next ride to come along. I am scared i am going to revert back to like I was in 2005. I do not think my body nor I can handle another horrid flare that lasted for a really long time. And yes it is because I cannot hold a pen to write, plus i thought hubby was signing her reading log and turns out he was not and had not since the second week of that month. And then it got took up before I got a chance to catch it up. I could not sign it that morning and was going to sign it that evening when she got home, but she had to turn it in. Lesson learned... now i scribble my initials when I can. Ya'll have to understand up until 2005, when I joined this board and got so bad off, I really truly did not know what RA was. I actually just thought I had old people joints. I was never told exactly what I had was. I did not even know I had an auto immune disease, which shortened my life and could even kill me. I was "new" to this diease just like many of you that have fallen ill with it. I just thought my JRA was normal. I knew I was different because I could not keep up with the other kids, and was always outcasted because I was gimpy. But I just thought it was because no one liked me because of the way i dressed or even looked and because I was poor. I just know that this is still "new" to me on many aspects. I mean... it does deal some hard blows like when I have to adapt or give something up because of it. I am just tired of adapting, I want it to adapt to me for once. Well.. ya know katie... it is ever changing. 3 years ago I did not have fibro. 3 years ago... I got along with just celebrex. 3 years ago... I was able to get myself up outta the floor and 3 years ago I was able to do a lot of things i cannot do now. I might have gotten outta the floor by pulling myself up by a chair, but I did not have to ask hubby to help me. 3 years ago I could make a closed fist and punch my hubby in the arm play fighting and now I cannot even do that. I get hurt everytime I play around with my kids or hubby. I sat on the couch the other night crying because I could not even get off the couch by myself and my husband was asleep. I knew I should not have sat on the couch, but that is the only way I can change my sons diaper, because at the moment I cannot bend over, because of my hip. My son even tried to help me off the couch like he sees his daddy do, but he is not heavy enough. I did ask for another pain med... she just gave me Lortab 10's. I asked for combunox, nope did not get it. I asked for something other than lortabs and only got lortabs. I did get darvocet, but that is like freaking water. I asked for rum damn it. I have tried, but it is hard to get things done when you are doped up and asleep because of the pain meds and muscle relaxers. I took my sleepy meds like ya'll suggested and all it resulted in was me sleeping and making hubby feel alone and them him turning to find someone else to keep him company. He did not cheat, but was well on his way in my opinion. Another week of me laying in bed doped up on pain meds, he probably would have. As for diaper changing, It was not because of pain but limited ROM, I had pred in me which takes care of my pain for a little while after I take it. I have had trouble changing my son's diaper since he was a newborn. My husband changes his diaper when he is home. That is why I am so wanting him to potty train already... I hope it makes it easier on me to tend to him. You might think I am making sh*t up about how bad I am doing, but ya know what. I really do not care. I know what all is wrong with me and I know I have to get things took care of, but right now. I have to wait my turn, well at least until next month. Then I will try to get the ball rolling on getting better. Just right now... I want to be somewhere where people can relate to me and not just say "Um-hum" or look at me crazy because I yelped because I twisted my knee or I jammed my finger. Maybe I've missed something, but Joonie does not strike me as one who is complaining about a situation she is unwilling to change. SHe has a new doc, she just said she recently started pain meds having never needed them till now. I have no doubt that she and her doc will adjust her meds so they can be more effective. I think she just is having a bad time now and wanted to say it instead of hold it inside. No one else gets reamed when they "vent". No, not making sh*t up, aure as hell wish I was. I am just tired of going round and round with you. I do listen I have done I have done best to my abilities. I have a certain demenor and it is not an out there one like so many of you have on here. I am passive. I do not like to ask for things, even if they are rightfully mine. I do not like to make people dislike me for any reason, the results are usually bad for me. I do not want to be seen as a pushy over bearing annoying patient. I might be paying them for their services, but ya know... she did get my swelling down and my mother was quite excited to finally see my body parts not so swelled. She was not too happy i still had trouble moving about, but I corrected it a little while later when I took a pain pill. It seems it was fibro that has been kicking my ass today, with a touch of JRA. Like I know what the hell is bothering me from one time to the next. I just have yet to figure out symptoms for each they both seem to be the same. It is just weird. I even have pain inside where my organs are. You know like the kidneys, bladder, ovaries, and intestines. Yeah... but they come and go. So I am not sure what all of that is. IC, bladder infection, or some other infection. I just do not know and cannot find out until next month. Thanks Milly... I hope you get fixed up soon too.
I am not depressed. Do you think if I was depressed i would even get outta bed or even laugh. I have been depressed before. I know what it is like to be depressed. I am NOT depressed. At most just disappointed. I was wondering if you are just frustrated? I know I am! I think with RA you can have 10 different emotions all at once and it's so damn frustrating! PS: Pardon me for jumping right in...... I sorry Milly that part was not directed towards you.
Joonie you know what, I think more than anything is you're scared. Everything seems to be piling up on you and your family and it's a scary time for you all. You feel guilty and overwhelmed because you can't do anything to fix it. You have so many worries, with horrible RA on top of it, pain, uncertainty, financial, family, children, hubby problems, it is just crashing down around you. It's hard to know what to do. I feel for ya sweetie, wish I could help, but I will pray some of your burdens are lightened and soon. Hope you feel better soon, the pain lessons, and you get started on the Remicade. I'm here for ya, pm me anytime if you need to talk...I love ya Yeah, katie, but that is exactly it! I am trying to not end up wondering anymore about anything because of me. Maybe that is why Justin will not seek help because he does not want to be a burden until it is absolutly neesscary. I do not want people to resent me or see me as a burden. That is my greatest fear. I mean I have been resented by my siblings my whole life and now a couple of them are starting to see. It is not the best feeling in the world when your own family dislikes you because of something you have no control over. Oh that was not from your post, just how you always say he does not seek treatment. Well.. I could relate to it, and that is what i feel. I said maybe not that it was definitive. I do know know the boy by what only you post. I read what you said, but it still does not help my situation. I know there are a lot of people in the same boat as me. I KNOW THIS. But I am not about to make problems worse. My FIL is having heart troubles again. He is unsure of his job right now. His income is what is keeping everyone around here afloat. I am not going to say hey give 0 so I can get semi-fixed up and while you are at it, come watch my son for me and hope I get outta the doctors office in time for you to go to work. I am doing bad, but I can manage for a while. That trip to the ER really done me some good. I am just hoping I do not have to pay the 0 co-pay. That is why I waited until the very last day before my medicaid expired before I went in. I fiigured get this pain took care of and December I can continue to get fixed up and doing better. Like I said I have more than me to think about. I will get better, it is just going to have to wait. It is not like I am dying or anything. Just a little discomfort and pain and mobility problems, but I can manage for a while. I did the 6 months I had no insurance I can do it again for another month. That is right it is called down play. You will learn when you get worse that you have to down play a lot of your symptoms. It is called adapting! I have days... times... that something is worse than others. Why would i want to rant to my hubby about something he cannot fix, when I can rant to people who understand and can relate. I am doing fine right now, because i took a pain pill. It seems to help with the symptoms that frustrate me. Like moving slow and hurting. But once the pain med kicks in it is kinda like smooth sailing for an hour or 2. I now, know why poor Roxy was like she was, because fibro pain is probably what was making her seem like we thought she was. I now understand. It just took me getting fibro to understand it. It is a rollercoaster. You hurt and feel like a statue. You get frustrated because you cannot move well, and do things you want to do, but you have to pop a pill for a couple of hours of relief. Like I said I am not sure, which is what, but my symptoms sure do seem to be ever changing. I mean I feel like I should be able to do things now that my swelling is down, but I cannot. I cannot move and when I can move it is limited by how far a cetain body part moves. I know I need PT and many of other things. I am hoping to get it all rolling next month. My plans were october, but they got pushed back. I have to go with the flow for right now. I cannot go against the "current", it will not help anyone, except me, but I am not all about me, I am considerate unlike some people.... hubby. Joonie (and Milly too) - you have really hit hard with something I have been keeping as a theme, and that is the hard part of having a disease that is ever-changing. It parties on while we sleep, and we wake up with a new set of symptoms. I know when I have a horrendous pain like I am having right now in my hands, that eventually it will pass. I know I am not dying, I just wish I was because its so terrible for awhile, and then it goes away for awhile. I start OT on Tuesday for my first splinting, so I have just graduated into another level of how this disease slowly eats you up. And I really appreciate everyone talking about how this place should be a safe place to vent. I was terrible when I first joined because I was so frustrated after 7 years of no help, and the MTX finally kicked in and slowly I realized something was starting to work. And, the AP has definitely gotten rid of the "malaise" feeling and my fatigue has lifted. But, still, every day is a different challenge for us. Joonie, everybody, I really admire all of you. At least we keep it together in here because this is afterall, is suppose to be a support group and a safe place to try to work out our own individual situations. I hope everybody has a great weekend. Cathy We all have our “ups” and “downs” and sometimes a “therapeutic” vent is all we need to help us feel better. I’m glad that there were some really nice posts with suggestions to help Joonie (barstool, scooter, etc.) and I hope she looks into those. We all know how RA affects every aspect of our lives; some in a positive way and others in a negative way. I can honestly say that there are times when I feel like “my plate” is overwhelmed too - just like Joonie. It doesn’t mean I’m depressed; I’ve experienced clinical depression so I know what it feels like. This is called life. No person goes through life without feeling overwhelmed at times. No person is cheerful and happy all the time. Am I wrong that this forum is supposed to be a place where we can come to for support from other people who have RA? I can’t see how the rude and argumentative posts are supportive.
The choice is always yours.
AND NO EXCUSES!!! You know I'm right here!
Anyway, I can repeat myself over and over until I'm blue in the face Joonie, but it won't do any good until you chose to listen.
Joonie i think you have a right to vent. Sometimes people tell us to get antidepprents. Well i am on one and so are you. Some of this is deppressing and i do not think they make a pill like that. At first when i got on this board i was WOW. I can not handle this all of these people and my heart goes out to them and i am such a worrier. It is stressful to me to worry about you and everyone else when i am sick or if i was well. Because i do worry about everyones physical and mental health on this forum. Getting angry and letting it out on this board is of great benifit for me. We come across as deppressed people because we are talking about deppressing stuff. Guess we could come on here everyday and say we feel great when we do not. We are sick sore worried frustrated tired and having a bit of trouble managing our day to day lifes and relationships. Heck yeah give me a pill for that i will take it too. You can cry on my shoulder or get angry or silly whatever anytime. Now if you do feel deppressed see a doctor imediately. I would do the same. But please feel free to let it out to us. It is ok to be tired of your RA and worried about your marriage. Even well people have trouble with there marriage sometimes. Some times your just feed up with the whole thing. Like me i am going in to remission like tomorrow that is my plan. It is taking alittle longer than i like. I have my moments and don't even tell you all everything that have going on but i will get around to it. I can't see worth a lick and my skin is turning into thick plastic I have the tightest chest and rib cage a person could possibly have. Have had for a long long time. It keeps getting worse. My breast are turning into plastic. But i am in pretty good spirits. I get worried and scared about being able to type or breath. My chest is carring around alot of fluid as is the rest of my body. I want a pill for that. See dosn't that sound deppressing. But i am unfortunatly kind of used to it. But yes very tired of it. I don't me to go away just the desease. I want the desease to go away. We all do. I am going to stick around and bother the doctors and the people on this forum no matter how stinking misserable i get. But i am going get better. I want some chest surgery or something. Maybe a rubber chest wall a bigger one. One i fit in. I know a retired guy that got run over by a truck and he has a man made chest wall. Said he was half bionic. I need some remission and surgery and i will be just fine and dandy. I bet we fix you up just fine too.
Hi, I'm Katie. I'm not sure we've met. My boyfriend is Justin, he has SEVERE Chrons. Right now he's in the hospital, and has been for almost 2 weeks. We don't know when he's coming home, when he'll be back to work, who's paying his medical bills, or exactly what day our power will be cut, or our phone, or our water.....I only make .33 an hour and I'm supporting the both of us, and my job is 45 minutes away from my house, I drive a gas guzzler that I still owe money on and can't get out of. And gas is up to .05 now.
Next time you feel "ever so alone"
DON'T.
You think YOU'RE frustrated? I have all of that (and a bag of chips) and SOMEWHERE in me, I still found it in my heart and time in my life to see you struggling, and to care. Imagine how frustrated I am, as it seems that I'm just talking to a brick wall.
Hi brick wall!! When you're ready to talk - RATIONALLY - so am I!
Re-read what I posted and try again.
The topic was how you're not the only person on earth with a boat load of issues, and how you can still work through them. Somehow I feel like that's already been covered though, and I'm getting tired of repeating myself.
You really are the excuse queen.