I hate your arthritis

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Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 12/18/2006 8:31 AM (GMT -7)   
My youngest (a daughter) who is soon to be 10 told me the other day that she "hates" my arthritis and that it interferes with our activities and that I can't do "anything" anymore sad   My son's who are 13 and soon to be 15 understand more, and they are concerned with their friends and have places to be and people to see.  My little critter (this is what I call her) still enjoys spending time with mom, and I admit I am not much fun at times eyes
 This past Friday, it was the day to volunteer in her class, and her teacher ( I love her dearly) needed me to wrap presents, complete with cutting the paper, and taping. Such a simple task, thankfully my husband had the afternoon off and stopped by to help.  I would have been hard pressed to wrap all of the hats. These beautiful hats that someones grandmother had lovingly knitted.  There I was at 35, and couldn't even cut the wrapping paper...I use to teach preschool and kindergarten and never thought about cutting paper.
I'm taking my plaquenil and my mobic and trying desperately to keep up with everyone and everything. I feel like I am letting my family down because some days I struggle just to get the bare minimum done and I don't even have to work! I'm a sahm, and yesterday my husband ended up doing laundry...
It bothers me so much since I can remember last November getting sick with a bad cold and cough, the kind of cough where you finally have to go to the doctor to get a prescription cough syrup so you can get some sleep, and after that I was never the same again.
My husband has lost a great amount of weight and would like to go snow shoeing, and it is just another thing I can't seem to do at the moment...Just frustrating mad
How does your family deal with your RA?

Veteran Member

Date Joined Mar 2005
Total Posts : 3148
   Posted 12/18/2006 3:28 PM (GMT -7)   

hey ma,

ah boy...this makes me feel so sad.  basically beacuase i'm the opposite end!  my mom takes it pretty hard, she gets angry & p.o.'d & thinks there should be this massive improvement in me due to all the treatment and also, "isn't there anything else they can do?"  eyes well yeah...i am doing everything!

all of the complications like the heart & lungs i know weighs heavily on her mind...i guess also she feels helpless.

my boyfriend of 4 years gets a bit depressed now & then & really is bothered when the pain gets very bad; he doesn't like one bit to watch me sit & suffer.  but i did meet him as a patient of his...so he knew what he was getting into & so was very accepting.

he's very fit and active & runs and likes to go for walks...and i can't do these things.  sometimes i'm alright enough to go for a short walk and when i'm really good??? those are great days.

i suppose our family members wish they can make it go away

i'm sure they all feel helpless

this just goes to show how diseases like this effect not just the person...but all those around him or her.

{{{{{{{{{big hug }}}}}}}}}} erin 

Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures. MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions Q3 weeks; Intra-articular knee injections; Imuran; Mesalamine; Prednisone tapering from 120mg; Meclizine; Reglan; LidoDerm; Diazepam; Restaril; Dilaudid; Avinza and too many others. 

Veteran Member

Date Joined May 2006
Total Posts : 1179
   Posted 12/18/2006 6:26 PM (GMT -7)   
hi mom,  i often say i am glad my kidos are older cuz i couldnt do it again with little ones, so i hear your frustration.  maybe ducky or el have some advice as they have little ones.  mine are 14 and 17 and need me only to wait on them tongue and i spoil as able.
i hear you on the wrapping thing too.  i wrapped 3 gifts and they look like your 9 year old wrapped them i am certain!  i usually fold my paper edges to look all neat and i couldnt grip that fine motor stuff so i said the heck with it redface it was all sloppy and uneven and it was for an unkown family for charity and i thought well they will think a child wrapped the gifts! eyes   i think i am going to buy tons of pretty bags after christmas to prepare for next year so i dont have the wrapping to do! bags are soo much easier and if bought after christmas it might not be toooooo expensive?  yeah
we need to not let this disease get us down this holiday and help each other to keep on smiling ~ it sounds like you have a great family! laugh at yourself if you can and they might laugh with you!  i think it is true about laughter being great medicine.  when i am down my whole family is on edge and worried..... and when i laugh they laugh at me!
its hard to laugh when you are down, but u know it is contagious tongue
thinking of you.... and now i HAVE to go get my cheesecake fix- per other post tongue hehehehehe duckys fault tongue

Veteran Member

Date Joined Mar 2005
Total Posts : 3199
   Posted 12/18/2006 6:43 PM (GMT -7)   
That cheesecake is calling your name Yalinda... do you hear it?  yeah
Hey Momto3... Ah, kids... out of the mouths of babes, huh?  I have 3 kids also.. 10, 8 and 7 and there are times when they look at me like..  Come on, what's taking you so long?  They don't understand, they are too young, my son (7) thinks it's just CRAZY that I can't run?  He can't even fathom that... since all he does is run full board every where he goes... We live for the moment... when I have good days, or good hours, I give all I have to them... and then if I need to rest, I tell them, mommy needs some rest, and for the most part, they are ok with it.. My husband is very supportive of me and my "issues"... He knows that I do all I can.. I am fortunate to be able to work still, however there are days that I feel like I can't move... But I make myself, I don't have a choice.. My job is not one that is very forgiving of my health issues... (I am in the military)... So I work a full shift.. come home and take care of the house and the kids, as my husband is also in the military and works nights.. I refuse to let my arthritis run me... there are days, weeks even that I think I've lost the fight, but then I always come back... You have to stay positive and you have to belive that you are bigger and better than this.. do not let it control you... you control it!  You will be ok... your children will adjust.. hang in there, and keep us posted, we are always here for you.. :-)
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 12/18/2006 8:05 PM (GMT -7)   
I'm sorry that you are dealing with this it most deffentley put a hamper on things and just trying to keep up with every body else is about impossible to do.I to have RA,OA,AS,SEJERENS&SMALL VESSELE DISEASE AND INFLAMATION OF THE LIMING OF MY NERVES.So I know all to well how you feel but try to keep the faith I know that it is hard to but it will get better and you sound like you have a wounderful husband that does not mind helping you out when you need.Please let us know how you are doing.

Harley Diva
Regular Member

Date Joined Oct 2006
Total Posts : 160
   Posted 12/18/2006 10:38 PM (GMT -7)   
Hi There sorry you are feeling frustrated. It sounds like you are a wonderful mother. I know you have much more to offer than wrapping skills. It is not easy for children to understand limitations. They think thier parents can go forever.I know the last 18 months were very bad for me. I thought it would all be down hill! Now my medications are kicking in and I am doing much better. Things can improve. Last Christmas I could barely turn a doorknob and this year I have been a wrapping fool. It has been a long haul and I can honestly say I was not patient or optomistic; but things do get better. Treat yourself kindly. I did buy great Holiday bags at Costco ( a big box store)........

Harley Diva
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds

Veteran Member

Date Joined Sep 2005
Total Posts : 1744
   Posted 12/19/2006 5:23 AM (GMT -7)   
Hi momto3!  I can read your frustration with this whole RA thing, especially with kids.  I have young kids,too, but my kids are only 4 (I have twin girls).  They don't recognize limitations, but they don't have very high expectations to begin with because of their age.  That being said, in the past they have gotten very distressed when I'm flaring and not doing terribly much.  I've simply found other things to do with them, e.g., reading, watching movies.  When I'm feeling good, I try to do all the things I can't do with them when I'm bad.  Sometimes I do wonder, though, that if this AI thing continues, and I progress, what will it be like when my girls are older?  One thing that distresses me is that, on occasion, my girls will mimic me!  Meaning, they will limp and complain that their hips hurt.  One time, we ended up taking one to the pediatrician because she limped for a week?!  There was nothing wrong with her hip, or leg, or knee, etc...I try to keep this in mind when I'm hurting and I monitor the way I walk and behave in front of them.  It's a fine line,though.  I don't want to mislead them; if I feel bad and physically can't do something, I'm not going to lie to them just to save face.  This is what my mother did my whole life, and it didn't do me or my siblings any favors.
My husband also hates whatever is going on with me, but he is always supportive.  I feel very blessed to have such a supportive husband.  His best friend's wife is struggling with a lupus dx, and he (husband's best friend) refuses to acknowledge that anything is wrong with his wife.  He calls her a hypochondriac because her bloodwork doesn't support a lupus dx.  I see this, and I thank God that I'm not in a situation like that!  Neveretheless, my limitations do affect my relationship with my spouse and we have discussed this at times.  I think just talking about it helps tremendously; it lets my husband know that I don't feel my limitations are permanent, and I just need him to be supportive when the limitations arise.  My RA/UCTD has taught me to be vulnerable and to depend on my husband more than I've ever depended on anyone other than my mother; this is a very important lesson, as I was raised to be very independent.  But this doesn't mean that there aren't times my husband doesn't need to depend on me as well.  My disease has made our relationship stronger in ways that nothing else could.
With respect to wrapping gifts?  I hear you, but wrapping gifts has never been a particular talent of mine (no patience and I couldn't cut a straight line if my life depended on it) so I don't sweat it.  My wrapped gifts always look like a 6-year-old did it--but I wrap better than my husband, so there.  If my hands won't cooperate, gift bags are a wonderful invention.
Actually, your example of gift wrapping reminds me of a wonderful show of love and affection one family showed to the mother.  The mother was undergoing chemotherapy for cancer and lost her hair.  She had 4-year-old twins, one boy and one girl.  When she lost her hair, her daughter was ok with it, but her son became very scared of her and wouldn't go to her anymore.  Of course, this broke the mother's heart.  One day, the father decided to do something about it--he, as well as both kids, went to a barber shop and shaved their heads. then went out and bought funny hats for everyone.  The kids loved it, and the young boy was no longer scared of his mother.
Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 12/19/2006 8:37 AM (GMT -7)   
Hey Erin...How was your weekend??  Were you able to get up and around?? I know you were having such a rough week.
I know your mom must be terribly worried because that is what moms do..they worry!! and it seems that there are so many treatments and medications, it sounds so simple right? I have found that it is not!  Your boyfriend sounds like a real sweetie :-) I am glad you have someone so supportive in your life :-)
Yalinda :-)   Well...I'm not that great of a wrapper, even on my best of days eyes :-) my husband wraps like a professional, so at home, I always let him do the wrapping tongue I am all for the bags!! Christmas bags..Birthday bags.  Yes, you can always get a good bargain, after Christmas is over :-) . By the way, that is so kind of you to give gifts to a family that is in need over the Holiday.  I so agree about the laughter! My husband is very laid back and nothing bothers him or gets him down, so we are a good pair, he keeps me smiling.  Cheesecake???? yummy :-) :-)
Ducky...You are truly awesome :-) in the military and you have RA. May I ask what branch you are in? No it is not forgiving of your health! Were you diagnosed while in the military?  Children have so much energy and they want you to have the same :-) A couple of weeks ago, we went to a college commencement, and we were going up a long flight of stairs, and my 13 year old son, turns to me and offers me his arm, asking me if I needed help since I have arthritis sad The lady behind us turned and stared at me, and at him as if he was being smart alec, but he was really trying to help :-) Thank you for sharing your story with me, you give me hope Ducky :-)

Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 12/19/2006 8:58 AM (GMT -7)   

Hi Elcamino!

I can only imagine that your twin little girls are adorable! I miss my own little girl when she was that age :-)   Do they go to preschool?  This is a scary illness to have, especially when you have children, the smaller they are the scarier it is sad   My children are less demanding, they are able to fix their own meals, get themselves ready in the mornings, very self reliant, but the activities, and the driving, volunteering at schools, is difficult physically.  Last year, I was completely fine, and by November I had this, and that was it.

Sometimes, I don't know how much to tell the kids when I am in pain, I don't want them to worry, since my 13 year old does worry about these things, but I need them to know that I am at my limits...it really is a fine line. 

I'm so sorry to hear about your friend and her lupus...she must feel so terrible physically and with no support from her husband, my heart goes out to her sad   It is difficult sometimes to ask for help, at least for me, I always feel like I need to "do it all", even though my husband it great at pitching in without being asked.  Your doctor is right about depending on your husband, that is what has happend in our situation, even though it was difficult for me at first.

All we can do is take it day by day, that I have learned! It's nice to hear from other moms :-)

Other moms who can't wrap and prefer gift bags tongue


Veteran Member

Date Joined Nov 2006
Total Posts : 1331
   Posted 12/19/2006 9:03 AM (GMT -7)   

Harley Diva,

Hi there, I do know what you mean about waiting for the meds to kick in...that is where I am now.  It is a matter of being patient. I am not exaclty the queen of patience eyes   but I'm trying :-)

I'm happy that you have improved so much, going from not being able to turn a doorknob to a "wrapping fool" is a HUGE improvement yeah

Hi Curely....Thank you and I am hanging in there :-)

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