Tough Year.

By maryi Monday, March 30, 2009

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Hi all, I have not been on R.A. central for a while. I am having a really tough time at the moment. Both my parents passed away within 4 weeks of each other and now it looks like my 19 year old daughter has R.A. as well. Just awaiting test results. My own R.A. was going really well until Christmas when I got a sinus infection - i had to come off my Humira in order to treat it. Since then I have had 4 other infections, maybe due to the fact that I was so low after my parents deaths. My R.A. flare ups are back with a bang, I am unable to put any weight on my right foot so I look like Quasimodo , I hate the fact that I might have given this awful disease to my beautiful intellegent daughter. Who is in College 500 miles away. Also that I feel too ill to really be of any support. My hubby, God love him, has been a rock. I have R.A. for 20 years and this is the first time that I am afraid, afraid to book a holiday in case I won't be well enough to travel, afraid for my daughter, afraid the effect of the disease is having on my 15 year old son, afraid of the side effects of the high doses of pain killers, steroids and anti-inflamatories. I know I will bounce back given time. Just at the moment it all seems too huge to deal with.

Sorry for the rant and moan, but nobody really understands, not doctors, not family, not friends, just others in the same boat.

Thanks for listening.

Mary

Comments (12) | Add comment

tessie

3/30/09 5:11pm

Thank you for sharing your struggles. I am so so sorry for your losses.

I know it's hard to not worry, but I also know it is not helping anything. Please be gentle with yourself; consider how you would care for your daughter if she were in your boat, and do likewise to yourself.

Again, my deepest, heartfelt sympathies to you and your family.

tess

maryi

3/30/09 5:41pm

Thank you so much for your kind words Tess, not usually one to moan, just get on with it. Just having a bad day. Tomorrow will surely be better.

Thanks again.

Mary

AmyAria

3/31/09 12:49pm

Hey we all have a need, nay a RIGHT to moan sometimes. If all the stuff your describing doesn't entitle you, I don't know what would! Sounds really really rough right now. Yes, you will probably "bounce back" at some point like you say but that doesn't mean it doesn't totally suck right now. I lost my mother over 11 years ago and sometimes it STILL comes down on me like a dark wet blanket.

Also like you I worry about what I may or may not have passed on to my kids. My mother and her mother both had autoimmune diseases. My mom's death was indirectly related to her disease to boot. When I was thinking about making babies it never occured to me I might be effected by a horrible family tradition, much less passing it to my kids. I'm sure you can't stop worrying about your genetic contribution any more than I can about mine, but the bottom line is you would never have wished it on her. I know my mom didn't wish it on me. Still RA or no, I still suck a whole lot of joy from my life and so will your daughter. As for my little girl, gosh the world would be a much lessor place without her regardless as to which side of the genetic lottery she comes out on!

Anyway, I do go on. Just know I hear you and I'm so sorry for your pain right now.

maryi

3/31/09 2:17pm

Thank you Amy, Today things seem better, not in as much pain and I made myself book a holiday to Italy. So now I have something to look forward to. My daughter rang last night and she said that if she does have R.A. at least she will know what to do, won't be going in blind as I was. So I have to admire her attitude lots. My hubby came home from work with a huge bunch of tulips, I love tulips. So I am feeling a good bit better. Thank you so much for taking the time to respond to my "moan". My parents died in October and November last and as there is no one else all the arrangements were mine to deal with. I don't think I had any time to grieve as it was running to lawyers, hospitals, funeral undertakers etc., So now that most of that is done, I am finally getting the time to think. The natural process of grieving is just starting for me and I know it will take time. But hey ! that is what life is about. So thank you very much.

AmyAria

4/ 1/09 11:36am

Grieving the loss of a parent can be a wierd wild ride too. It makes no difference how old a person is when it happens either. I have a hard time imagining losing two. My only other advice is to just toss out any preconcieved notions of how you "should" be feeling or schedules as to when you "should" be over it. I'm an organizer as well and as I'm sure you've figured out, there is nothing tidy about grieving. It's ok to feel awful and it is likewise ok to laugh and have fun too. I would sometimes catch myself being jolly and feel bad about it, silly huh? I also like Lene's suggestion about counseling. I turned to a pastor after mom died because for a time I felt like I was drowning. The pain I felt was as real as any physical pain I felt before or since. Yup, counseling good. Never hesitate to go that route if you need it. It can really REALLY help.

In the meantime, between Italy and spa treatments with your daughter, it sounds like you are giving yourself some EXCELLENT things to look forward to!

Best wishes!

Lene Andersen, Health Guide

3/31/09 7:32pm

I'm so sorry to hear about your parents - it's hard losing one and I can't imagine what you must be going through. No wonder your body is rebelling. And your daughter possibly having RA, as well? Wow. I understand your battle with feelings of guilt and I'm not going to try to make you feel better about that - you have to work your way through that yourself. However, you already know that it isn't your fault and I'm pretty sure that as a mother, you would happily take on her RA, as well if they could spare her pain. You're going through a hard time yourself right now, but what your daughter is going to need more than anything as someone to listen and someone who knows what she's going through. And that you can do on the phone. She needs your love and you don't need to be able to walk to give her that.

I can offer you some practical advice on the sinus infections when you get back on Humira. Through my own experience with loads of them, I found a really easy way of helping to minimize the problem. It's in one of my post from last year about managing side effects, but the short version specifically on sinus problems is to drink lots of water, which helps dilute the crap collected in your sinuses soy drinks more easily, lots of pineapple juice (the 100% kind), in addition to the vitamin C, pineapple has an anti-inflammatory enzyme which helps your inflamed sinuses and as much garlic as you can handle (it has antibacterial properties). I find that it keeps things down to a dull roar and whenever I start building to a sinus infection, I increase all of them and have been able to beat the infection down again several times.

Down the road when you have processed all of this grief, you will find a way to live without fear again. You've been knocked off balance in a major way and it'll take a while. Have you considered counseling? It might help you through the initial rough time.

We are here. Vent anytime you need.

maryi

4/ 1/09 5:27am

Hi Lene,

Thank you so very much. Will take on board all about pineapple (yum) Garlic (yum and Vit C. Also for fellow sufferers there is a rinse you can use called sinus- rinse ( original !!) which I really found useful, it is a mix of salt and bread soda. A god send when you are driven mad with the sinus problems. As for counselling - I AM a counsellor for all my sins and I have as much professional help as I need. I have stopped counselling for the moment - as I deal mainly with couples in crisis ( mediation) did not need it right now. (note the different spellings from Ireland). I had a long talk with my daughter on the phone last night, she is a bit fragile, as she has lost beloved Grandparents as well as dealing with the possibility of R.A. plus exams - She is due home on Saturday ( Yippee !!) for two weeks so I have booked a spa for next week for the two of us. Just a morning for a massage and swim. We will have the results from her tests in 10 days and I have prepared a meeting with the local R.A. nurse just to talk through her options. So a wee bit more unstressed and organised. I am one of those people who HAS to be organised for every eventuality. Not the easiest person to live with but they are all used to me and most of the time take no notice.!!

Thanks again for taking the time to post. The one thing that has kept me going through all of this is my Garden. I am a complete fanatical gardener. I now have raised beds so I can work more easily and all the seeds that I planted are starting to come up along with fruit trees in bloom. A sure sign that the cycle of life continues, no matter what. I recently got a wormery and now have lovely compost to add to my organic vege plot. The weather is nice here at the moment about 14C so I can spend some time there even if I can't do any work.

But one think never ceases to amaze the support you can get from complete strangers when your own family are unable to give it.

So thanks to everyone who replied.

luv n hugs

Mary

Lene Andersen, Health Guide

4/ 1/09 11:57am

By the way, when I mentioned soy drinks in the comment, it was a mistake. I write using a voice recognition program and sometimes it misunderstands me. And because I know what it's supposed to say, I don't notice the occasional creative interpretations. What I meant to say was that drinking lots of water helps dilute the stuff in your sinuses so it drains more easily.

Glad to hear that you're getting organized. I'm the exact same way - I like to say that I have the soul of a librarian. When my life is out of control, I make plans and when it's really out of control, I alphabetize my CDs. It's very soothing and helps me get down the path of regaining control of my life. Sounds like you have a wonderful time planned with your daughter, lots of relaxing together and some getting organized together.

Fruit trees in bloom? Sob... it's still very much winter here in Toronto. I miss Europe where by April 1, spring was very definitely there. I hope you enjoy it!

Lene Andersen, Health Guide

3/31/09 7:32pm

Sorry - forgot that link to the post about managing side effects.

BethG

4/ 2/09 4:06am

Hey Maryi,

I just read your post, I am so sorry for your loss, it will definately take time to

go through the greiving process. It will also take time for you to get back to being as healthy as you are able to be. I have Fibromyalgia and my fiance' has RA and Gout,

so I know just how rough RA can be, my fiance' hasn't been able to walk more than

a few steps for about six months now ( and he told me only a few weeks ago that his doctor had told him he thought that he had had a minor stroke, the doctor told him this back in December!) so that isn't making it easier for him to recover, plus I found

out early last year that my daughter has Scoliosis ( don't know how to spell it, sorry )

she is about 5'10" and weighs about 220 pounds, she is now 20 years old. So I understand how you worry about your daughter, all we can do is try to keep ourselves

as healthy as possible and be there for them in whatever way we are able, although

we will always worry about them we need to trust God to take care of them when we

can't. I lost my mother when I was only 4 1/2 and it wasn't until many years later that

I greived for her loss because of our situation at the time of her death, I lost my Father in 1986, six months after my second son was born, my father wasn't a nice person but I still greived for him when he passed, so I'm sure your grief is worse than what I went through because you were close to them. This isn't about me though, I

just wanted to let you know I understand what you are going through.

God Bless BethG

sharon

1/23/10 3:06am

my mom died at t2 from he age of 62 from ra.i am so pisswd off. why her and why did she have to suffer for so many years

Sharon

1/23/10 3:36am

Please don't ever give up

Tough Year.

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