Question about spouses/partners

[10lilSarahs]

I just want to know if it's normal for spouses/partners to withdraw?  My marriage wasn't perfect before, but since my diagnosis with RA, it seems to be getting harder.  I'm a stay-at-home-mother, and might have slackened with some of my housekeeping, laundry especially, since the washer and dryer are in the basement and it hurts to walk downstairs a lot.  I'm also pregnant, so I know I'm hormonal, and with all that I'm wondering if I'm just imagining things.  It seems though, that when I'm in pain, which admittedly doesn't seem to be all that bad, my husband seems either resentful, disbelieving, or just plain angry.  His parents spoke with a doctor who told him RA goes away during pregnancy so sometimes I get the feeling he thinks I'm lying.  If anyone's gone through anything like that, it'd be nice to know I might not just be paranoid.

[irish]

hey

although my husband is generally quite supportive i don't think he fully gets the pain that i am in on a daily basis.  he understands a little more now thatn he used to.  he used to get quite annoyed at me when i would make him circle to get a closer car parking space to wherever we were going because it was too painful for me to walk and once when we had passengers parked at the bottom of a hill and got annoyed at me in front of them when i said about it.  i was so embarrassed.  i do think that i have a guilty conscience and am quite conscious of the fact that i am putting other people out due to my illness that i am quite sensitive about it.

has your husband ever gone to any appointments with you?  maybe that would help for your rheumy doctor to talk to him.  or even let him have a look at this site?  how many children do you have?  i have just had my third child 8 weeks ago and my eldest will be 3 on friday.  being pregnant with two other children was especially hard for me this time.  my husband did have to do the majority of the housework and cooking while i was pregnant and most of the childcare whenver he was at home.  he is a lorry driver and works quite long hours.  although he would never say it i think that he can't help at times to be resentful or maybe just annoyed because he is tired and still has so much to do when he gets home.  as well as that my husbands parents didn't mention the fact that i was ill until about 2 years ago - i have been with my husband for 12 years!  she would completely ignore the fact that i was in a sling or on crutches.  i think she felt that i was a burden on her little boy!!  i think that arthritis is not understood at all and many think you get the odd twinge in a particular part of your body not in joints that you didn't even know you had all at the same time!  you should try and talk to your husband about it and maybe educate him on it so he understands a bit better and has more empathy.  my husband has only went to a handful of appointments with me because he is always working and as well as that my father has one of the same illnesses as me and we would travel to appointments together.  he did however come with me 2 years ago to get my two toes injejected and more recently my hip joint injected and i think watching it done made him realise it wasn't just a twinge! 

good luck!

[lissa80]

I would suggest he come with you to the doctor too. Have him write down his own questions and concerns. Anytime my hubby has to sort of step it up a little more than normal can always cause a backlash of some sort. I can't really blame him, I am the same way. But I try to balance it out with him by giving him a break every so often. It's never perfect. And I try to sympathize with him. Sometimes I do and sometimes I don't. When I was pregnant it was harder for me to sympathize, not because I was in pain, but mainly because I was very hormonal. Our days of marriage were indeed harder during those times. The last time I went to see my Rheumy my husband asked me a bunch of questions and I didn't really have any answers for him. I could sense his frustration and finally we just agreed that he should come with me for the next appointment if he can. If he can't he would write down his own questions for my doctor. I know that if it were him going through this I would want to be with him too.

The bottom line is during pregnancy especially, your hubby is gonna have to go a little extra mile a little more than he's used too. I think all you can really do is keep talking to him and telling him you appreciate him. If you think it's particularly bad maybe you could seek some counselling. Marriage is rarely 50/50 and sometimes it's work to get through the rough patches.

I hope things get better with you. Good luck with the pregnancy!

[cavandad]

After reading these posts, I just went and thanked my husband for being so great.  I give him quite a workout going up and down the stairs.  Lucky for me, the laundry is on the main floor of our house.  I sort the laundry upstairs, my husband brings it down, I wash it, he takes it back up.  No need to go to the basement.

I have to say I am SO SO fortunate.  My husband never complains.  Mind you, I still feel guilty sometimes.  Our house gets to be a true mess at times, especially if I get tuckered out.  I ask my husband to do so many things, but I don't nag him about cleaning the house.  It stresses me out though.  Fatigue seems to be a big thing with me, especially on the days I work.  If things don't get cleaned, then they just don't get cleaned.  It's a mess.  We deal with it.  When I feel better, I clean.  When I am cleaning, then I ask him to help.  There are exceptions (Cavan is out of underwear!)  And of course, he's always in charge of taking out the trash and running the stairs.  He never complains, considers it part of his exercise program, and I am very thankful.  Thank goodness!

FYI, not every woman goes into remission during pregnancy.  I didn't. I got worse.  If there is a lessening of symptoms (I think in about 70% of women), it's usually in the second or third trimester.  I agree about having him go to an appointment.  Have him understand inflammation markers and such. 

Sometimes I wish friends and family could walk in my body for 24 hours, just to know what this feels like.  I forget what it feels like to NOT hurt, to not do things in an odd manner, to sleep without tossing all night.  I have been trying to ride a bike again.  I remember what it feels like from riding as a kid.  When I get on the bike now (just swinging a leg over is a crazy site), it doesn't feel at all like I remember.  I can't hold the handlebars the same, can't push off the same, can't stop the same.  It's almost like learning how to ride all over again, only I know how to balance!  Do others understand these things?

Maybe you all have this, maybe it's my own control freakiness.  I am seeing a psychologist (I do this on occasion when life gets stressful).  I was telling her that my "think ahead" exhausts me.  Does anybody else do this?  When I get out of bed in the AM, are my knees going to hold?  Which way will I fall if my knees give out?  What pants can I wear today if my fingers aren't working well?  If I make a snow angel with my son, how will I get up?  Can I go to the store if there's nobody home to help me unbuckle my son's carseat button?  For me, it's not just the pain and fatigue, but it's thinking about how to get through a day that does me in.  Luckily, I'm having to think about these things less and less, as my RA is improving more and more.  Still, it's all there, and tires me out!

Love to all.... sorry for the tirade.  I think I'm cranky!

Lori

[irish]

Hi girls

i actually forgot to mention that!  even though i have psoriatic arthritis the concepts are pretty similar and a remission is the norm in pregnancy but i actually got worse with all three of my pregnancies and had pelvic arthropathy so not a fun time for me!  nobody can predict whether you will be one of the lucky ones that go into remission.  i would love another child but the 9 months of hell (!) i go through every time has completely put me off.  in my heart i would be pregnant again already and my daughter is 9 weeks old but in my head i know that i couldn't cope with another pregnancy on top of caring for the three i already have.  my obstretrician told me to stop at two that my body couldn't handle another one.  third time round i have to say i think she was right although you couldn't tell me that at the time!

Lori you are trying to ride a bike!  you must feel a little better - the idea horrifies me!  i have this last couple of weeks been out for a walk a couple times a week and that has been the first in 6 years - my knee is protesting already!

i really think that you can't understand unless you have been through it.  our husbands can try but the fact that you decide not to leave the house that day because getting little ones into their car seats is just too much or as you say the mental exhaustion is just too hard for lots to understand-  especially those who don't live with you!!

i have a small torn cartlidge in one of my knees and the pain of the arthritis as well so they wouldn't operate because they weren't sure of success.  i am convinced now it is the cartlidge after having gone walking.  my problem is if i go in to get it repaired i will be off my feet for a week or two with 3 small children.  how do the rest of you get round this sort of thing?  i do have a childminder but she keeps them to 5 and my husbad is rarely home before 7 and plus i wouldn't be able to driveto drop them off or pick them up?  see - mental exhaustion!  i must be cranky too lori!!

Denise

[lissa80]

O, my gosh you hit the nail on the head when you said you wish others could walk around in your body to know what its like. I TOTALLY feel that way!!! The main problem my husband has is seeing me in pain and not being able to make it better. It scares him and worries him. When he's scared and worried he gets angry. I am the same way. I react with anger.

I hate how I feel. I feel like I'm being such a brat complaining all the time. When you are in remission and pain free you forget what its like to be in pain sometimes. At least I do. Then when I have a flare up like right now, and life is such a struggle all the preplanning like you mentioned and the exhaustion...it just makes me so mad. Mad at myself, mad at my circumstance. Some days I'm ok and I keep myself and my head busy so I don't think about it too much and other days I just need a hug and a good cry.

A good support system, a good therapist are good ideas for coping I think. Just having someone listen to you, really really listen to you and love you enough to sympathize even if they do not have RA is sometimes all I need. Everyday I try to wake up and thank God for my blessings and what I do have. It's hard to remember that sometimes. But I do try.

This is such a good thread. Thank you all for being so honest.

[irish]

Hi girls

i just want to moan!!!

I have had a dexa scan and an MRI of my knee in the last week.  dexa scan results show i have osteopenia and have the bone density of a normal 80 year old and the MRI shows 3 damaged ligaments, damaged cartlidge and another condition due to the alignment of my knee.  the result is 6 months physio and then maybe an op on the cartlidge if the pain doesn't settle. 

2 months ago was the first time i have been able to go for a walk in 5 years.  for once my arthritis was under control (apart from my ribs), i joined weight watchers and wanted to start exercising when i could and now i can't because of my knee.  due to the osteopenia they recommend a high calcium diet - which is usually high fat and weight bearing exercise like walking - which i now can't do.  then 2 days ago i woke up with swollen fingers and feet and now it feels like all my tendons are inflammed.

does anybody ever get fed up of the constant setbacks?  sorry to be such a moan.  i usually am quite upbeat about things but sometimes i just want to be "normal".  anybody else feel like that?

i feel a bit better already by offloading that!

Thanks!
Denise

[cavandad]

Gosh, I'm a shmuck!  Somehow I missed your posts, ladies!  I'm so sorry!

Well, I agree, the setbacks get crazy, and it becomes very easy.... too easy... to get discouraged.  I was doing great for 6+ years, then after Cavan was born, my body went nuts.  Crazy RA, thyroid issues, itching issues, lots of illnesses, I stopped poopin for THREE MONTHS!  Who does this?  What the heck is the matter with me?  I was starting to feel like a hypochondriac, but I knew I wasn't.... who stops poopin??  Docs have not figured out what's wrong with me.  I get so frustrated.  I was stressed.  I went and saw a phychologist (I've seen her off and on the last 9 years or so, but haven't really seen her since Cavan was born).  Anyway, here is what I learned:

I have a horrible long history of interactions with doctors, starting at about age 3.  My health has been strange most of my life, and doctors don't really "get it" with me.  In high school, I had a doctor who wanted to amputate my leg because I had a bone cyst (discovered as a result of a broken leg).  Insane!  Doctors are experts on disease, but they are not an expert on ME.  I am my own expert on me, and if docs don't have the answers, then I need to keep looking.  They offer an opinion based on their area of expertise.  They may give great advice, but maybe my body is different. 

Anyway, I realized my current frustrations with my health and nobody figuring it out, despite a lot of tests.  So, I started a list of things that I think may help me be healthier (this is NOT a recommendation to anybody, but something I am doing for myself.  Consult your doctor!).  I'm going to try a handful of things to see if they make me feel better.  I'll keep what works, ditch what doesn't.  Right now, I'm trying to drink more water, as I know I don't drink enough.  I'm also eating much more organic food.  I started physical therapy and found out my back is having all sorts of trouble as a result of my RA and pregnancy.  The therapy is helping  a lot, especially with my energy.  Anyway, I feel better, knowing I am trying to be proactive, not reactive.  I'll let you know how it goes, but so far so good.

Sorry, a show on autism just came on, and I gotta check it out.  Later gators!

Lori

[10lilSarahs]

Wow!  I am moaning for you, Denise!  How goes the high-calcium diet?  And the knee??

I loved the insight and information from the responses to my question, they have helped a good deal.  I am accepting that when I need help I will have to ask (...or demand), and when I have to let certain tasks go unheeded, I may have to do the same with some of the comments!  It helps a lot that I am feeling great right now, thank goodness, and can think about how to handle things rather than having to actually implement them. 

However, I have had a bit of my own setback, though by no means one I am ungrateful for.  It has more to do with diagnosis.  Originally I saw my primary care for joint pain, thinking maybe I had Lyme's.  We did blood work and she sent me to a rheumatologist who of course did more blood work and told me I had RA, based on high CCP antibodies, and prescribed hydroxychloroquine, which I ended up not taking b/c I found out I was pregnant, and the pain seemed to lessen to a manageable point.  I kept trying to get an appointment with another rheumatologist, closer to where I live, b/c I wanted info and a plan for when the baby came.  Finally was able to get an appointment for when my son and I were scheduled to return from a vacation visiting family.  While we were gone we caught colds and the pain, which was annoying till then became unbearable.  It made sense to me, having to do with the immune system, but I don't really know anything about that.  By the time we got home we were on the mend and the pain was subsiding, so I was looking forward to my upcoming appointment.  And we get there, and wait an hour of course, and the doctor tells me I DO NOT have RA.  At first I was really happy and relieved.  And then I began to wonder what is actually wrong, or what to do next...but the doctor just kept lecturing me, almost as if I had offended him.

He told me a positive RFactor did not specifically mean RA (which the previous doctor said and I knew from my own research) and that CCP antibodies change (which the previous doctor had said was the specific indicator of RA).  He said that if I did have RA I would need chemotherapy and that I should concentrate on my pregnancy.  He said he agreed with my previous doctor, that I don't have it, but then why did she prescribe me the hydroxychloroquine--did she think I have malaria?  Don't get me wrong, I would be happy to not have RA, but what I'm concerned about is the pain and how it effects/will effect my life.  I left in tears, feeling more lost than when I arrived, which is pretty remarkable.  He's an arthritis specialist and a doctor, why not say "I don't think it's RA, but it *might* be up my alley," or "I don't think it's arthritis, perhaps you should go back to your primary care." 

So I currently have no idea where to go next.  I almost feel guilty now thinking about going to a doctor when I feel pretty well.  Anyway, I'm thinking I should take a page from Lori, accept that I am the only expert on ME and maybe the last doctor I saw was just an expert in douche-baggery, even though I know rationally he's well-respected and highly educated, he just wasn't put on this earth to interact with me in a pleasant way.  But I'm sure he helps lots of people.  I'm thinking of either calling my primary care to keep exploring this, or simply waiting for another episode of pain and waddling (27th week!) on down to Johns Hopkins (we're in Baltimore) and demanding they get to it while the gettings good.  And maybe, just *maybe* there won't be another episode of pain!  There's upbeat!

[cavandad]

Sarah,

Bless your heart!  That just SUCKS!  Sadly, you're right, and it's exactly what I've been talking about.  Doctors don't always know.  I've met many women who have something unknown and weird going on, but because doctors can't label it, they don't get help.  It's not right!  And if you didn't get answers, he should have at least steered you toward a place to look!  Shame on him/her!

Again, I can't give medical advice, but.... if you're feeling ok about it, you may just want to wait until after baby arrives.  You probably don't want to be changing things when pregnant anyway.  What I would suggest: make an appointment now (as they book up 3 months out in Colorado where I live) to see somebody (another rheumatologist?) about 4-6 weeks after baby is born.  If it is RA or even something else autoimmune, it is very likely to get miserable around that time, and it would be great to have that doctor already scheduled.  You can always cancel later if you want to.

And yes, some doctors may be highly intelligient, but they leave a lot to be desired in the people skills department.  Luckily I have had some great doctors and have learned to run from (but not before tryig to educate them) the bad ones.

Sarah, I hope you're still feeling well.  I'm thinking about you!  Please keep us posted!

Lori

[cavandad]

Oh, and Johns Hopkins (my husband's alma mater) has some great stuff on RA.  It seems like I see many studies come out of there.  I would think that would be a great place to go!

[Doxymee]

OMG! I have the itching issues! It actually started with my first pregnancy andthen went away about my 3rd trimester then, with my second pregnancy so I chalked it up to pregnancy hormones but hen just the last 4 mnths it started again. It started on my left hand and then  oved all the way up past my elbow. As quick as it sstarted it is gone again? what the H is that?
Deb

[cavandad]

I don't know what the itching thing is, but it gets annoying off and on.  I wonder if it's meds, but I don't know.  It seems to come and go, can be tiny little bumps that come from nowhere, or big itchy areas that feel hard under my skin (especially on my schins... hmmm.... how do you spell that?), then it just goes away.  It seems to happen in cycles, but I can't figure out what the trigger is.  So far, I'm not putting it high on my radar, as it doesn't bother me as much as other weird things with my body that do need addressing.  We'll see what time brings.

Love to all!

Lori