Angry Daughter Being Punished

By Princess Heather Saturday, January 17, 2009

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This is my first post, and I am a 25 year old living in Eugene Oregon. Ten years ago my mother was diagnosed with Auto-Immune Hepatitis, Rheumatoid Arthritis as well as having liver disease. It has just progessively gotten worse for her and how she manages her pain so much so that she struggles with severe depression, paranoia, and with all the medicine she takes she is barely surving because of her high prescription costs. This has severely put a major strain on our relationship.

A few years ago I started having anxiety at night and couldn't sleep because I was so afraid I was going to be like her as I got older. Well, about a year ago it became harder and harder to get up and moving in the mornings and I would walk with a limp every morning until about 10 a.m. I thought surely, this is all in my head. There is no way that I am going to be like her. It's all in my head that I hurt so bad every morning. Soon after that my fingers began swelling and it would be hard to hold a pen or bend my fingers. Then my ankles and feet were randomly swelling for no reason and it was now hard to walk at all. I thought this is a joke. I am becoming the woman I have tried so hard not to be. How can this be happening? I put off going to the Dr. because I hate going to the Dr. I hate taking pills now because I saw what it did to my mom. So after the pleading from a friend, I finally went.

My primary physician is not the most sympathetic but I told him how I have been feeling and he said it was due to my weight. I asked him for a blood test anyway to check for RA. He was very reluctant but ordered the test anyway. The nurse called me later that day to tell me that it came back positive. I instantly began to cry. I asked her what my RA factor was and she said typically the number should be below 20, and that mine came back over 1900. Seriously? Are you kidding me?? They referred me to a Rheumatologist who just happened to be the same one who treats my mom. Well, due to that factor im pretty sure thats why they didn't want to see me. My primary then wanted another blood test done to re-test that RA factor because it was so outrageous, which this one came back also, over 1900. I was then referred to another rheumatologist who made me an appt that same day. She ordered another RA factor test and informed me that my last two tests couldn't be right so she wanted her own test done and also let me know that the blood work I had done was also tested for lupus which those came positive as well. Geez. So four more blood tests later my RA factor was still, over 1900 but the Lupus came back negative. YAY for good news right?

I just started taking Plaquenil on January 1st, 2009. I'm not feeling any better yet, but I guess that can take weeks to months. Yippee!! I'm concerned for my eye sight now, which I still need to have checked.

I'm so mad that I have this, I know it could be much worse and I could have something life threatening but of all things, I get what my mother has? Now she thinks we are kindred spirits or something lame like that. I'm still very angry and feel like I'm being punished because I DIDN'T want to have this so bad, that I got it. When I look in the mirror, all I see is her, when I look down at my hands and feet, all I see is her. I'm so frustrated. I have several friends all who are "trying" to be supportive but they all have their own lives and their own battles as well. I have one friend who is just WOW. I love her. If it wasn't for her I'm positive I would be way more bitter than this.

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Comments (13) | Add comment

Debra

1/17/09 8:04pm

I've been living with this thing for over five years now and thought I had come to terms with it until I had a remission this summer. Two months of feeling "normal." When fall hit the pain came back and so did all the anger and sadness. Once again we're tweeking drugs and dosages to patch me back together.

I've found that this forum really helps. I regularly read posts from people much sicker than I am with far better attitudes and that helps me keep my own suffering in perspective.

Having to take care of others helps too. I am a middle school teacher, a wife, and a mother of two teenage boys. Although my family tries to be supportive and is good at letting me nap, they mostly expect me to function. If you could find a worthy cause that needs your passion, but not a huge physical commitment, it may help you cope.

Princess Heather

1/17/09 8:21pm

Thanks for posting back! Reading others journeys and looking at their perspectives and trying to stay positive is definately helping. Isn't it weird how the weather can change our pain?? It happens with my mom from season to season. Well thanks again for writing me I really do enjoy sharing experiences with other RA affectee's

bmowrey

1/24/09 11:04pm

I too know all too well about looking in the mirror and seing my mom too.

I have been living with RA for 4 years now .I knew what i had when the systoms started.

my mother had it for many years .

I was 33 when i got it .I Have been on Plaqunal for 1 yr and steriods .it slowed it down

Stay moving if you can and hot showers and long baths help too.avoid going out in the cold if you can help it .I am a long haul trucker but keep your spirts up some times it really freakn hard.with all your dealing with.Plaqunal takes about 4-6 months to feel any relief .

Lisa

1/17/09 9:35pm

I have had RA for over 12 years. No one in my family has RA. I have two beautiful daughters that I pray will never have to learn the pain of this disease. Please understand that your mom would rather you never had to learn of her illnesses by having it yourself. I am sure it hurts her to know her daughter is ill also. Perhaps you can help each other. I wish you all the best.

Feels like the TinMan

1/19/09 10:12am

hi Heather,

I'm sorta new to this RA thing too, having been DX in Aug. For the first few months, i was hurting very badly. I went into somewhat of a depression, and now that i look back, i think i was angry too. i started on Relefen and that provided no relief. I started on Plaquenil in Sept i think, then Prednisone in Oct, and 2 wks after i started the pred, the pain went away. I feel WONDERFUL. i have twinges here and there (today it just happens to be in jaws....but that could be the stress of the Arizona Cardinals Playoff game (go cards!)...but i'm not consumed with my RA anymore, although it sits in the back of my head fearing that one day this 'dream' is gonna burst and the pain will come back. for now, i'm living my life and enjoying everyday.....give the Plaquenil some time, it will work.. i've had no side effects. I've had my eyes examined already, and the doc told me it was very rare to have any eye effects from Plaq, but my astigatism is coming back (post Lasik 4 yrs ago-rats!) but that's not from plaquenil. All i can tell you is keep the faith. It will get better, but it starts from your attitude...believe me, i can speak from experience.....Hope the plaquenil works for you..

SuziKelley

1/19/09 12:51pm

Your post makes me sad, as it seems you have anger towards your mother tied up with this horrible disease. I was diagnosed with RA just 2 months after my twin boys were born, my oldest son was only 2 (I had just turned 22 yrs old, and RA does not run in my family at all). They've never known their mom to be healthy. I've since had a 4th son as well. One of my biggest struggles is the guilt that I feel that I can't be everything to them that I should be able to be. They have to help more around the house. They have to be understanding when Mom can't take them sledding or on bike rides... or even for a nice walk, as sometimes it is difficult enough to try to get to the bathroom, let alone walk around the block. I love my kids more than anything.. and I would endure pain 1,000,000 times greater than this if it meant keeping my boys healthy. I wouldn't wish this disease on my worst enemy. My biggest fear is that they will resent me one day. I pray that never happens.... it would break my heart.

I'm sorry for your pain and your anger. I still, even 10 years after my diagnoses, get angry at times and ask Why Me??? Life is not supposed to be this hard. One thing that makes it so difficult is that no one understands the pain and fatigue. Maybe you can take some comfort in knowing that your Mom has been through this, and understands your pain in frusteration. I hope that the two of you can find comfort and support in each other... and as lame as it may sound, kindred spirits isn't necessarily a bad thing.

(((hugs)))

God Bless,

Suzi

Galen Gilchrist

1/19/09 7:07pm

I was sorry to read your post about your mother's and your story and your anger. I understand your anger, having lived with your mother with this disease and more and now to find you have it yourself. It is a genetic disease.

I was diagnosed over 40 years ago before they had Rheumatologists and the drugs they have today. I gave birth to two daughters who are now in their 30s and 40. My oldest daughter was diagnosed a few years ago and her disease has followed the route mine took. Her knees being the worst. I prayed the whole time they were younger for them to be spared this painful, fatigued life that they have witnessed first hand with me. I have always been accused of being lazy because some days the fatigue was so bad. I have family members who do not understand and they also think I am just lazy, unable to understand what I go through just to get through each day.It hurts and yes, I get very angry as my daughter is angry with me, but over the last few years she has come to understand what I have been living with.

My suggestion is to try to let go of the anger as best you can. It serves no purpose and only makes us feel worse. Try to find something you enjoy that will raise your spirits and just be happy that you are alive and try to feel alive if you can. Find funny movies and take baby steps. The Plaquenil will start working soon and you will feel better. You will always have this disease with ups and downs and I sincerely hope your ups far outweigh your down times.

I wish you the best and hope you are feeling better soon.

Galen Gilchrist

shannonlee

1/20/09 7:46pm

Quite a story...and thats how this disease is-a story,just hopefully one with a happy ending. You do have the predispossed disease which sucks. I dont have any family history with the disease so mine is a little different. I am amazed, I never thought a RH factor could be so high. For sure that would be in a danger zone, surprised your doctors didnt put you on prednisone first. Glad you dont have lupus. I am oh sooo blessed to have Lupus and RA. And lupus by the way is not a positive/negitive found in bloodwork alone. So many factors can relate the two though. One inflames the joints the other your whole body-organs, blood, muscles....Its a pain-literally. I thought I was young coming into this disease only 32, looking more like 22. I am happy you have a supportive friend. We could all use more. I support ya!! Its a lifetime battle we have within ourselves. We didnt choose to be this way, nor do we appreciate it. Its not welcome in my books but what can we do. Keep positive and find that better meaning to life. Remember what you look like when you smile, that feeling you have at a funny joke. Hang in there.

Brooke

1/22/09 10:50am

your story is very emotional, how terrible that you almost expected it to happen, you were waiting for it to strike, i count myself lucky i never knew before! I'm new to it all too, i don't accept it either! Never will, me and my nana have a good moan about the cold and aches and pains together (she has cancer in her bones) it's a bit depressing, but nice, we make a joke of it!

You'll feel stronger and emotionally more stable soon for sure, it's a bit of a rollercoaster and then you'll probably feel messed up again coz they'll put you on something that makes you crazy haha my moodswings are terrible (Y)

I'm truly sorry you are feeling like this and hope it gets better soon : )

RA Sisters Give The Best Advice --- this website is awesome and gets me through the bad days

love the lot of ya by the way :) xxx

Anonymous

1/22/09 11:03am

Hi there, I was touched by your story. I would like to chat with you if you want to you can email me at julierbullard@peoplepc.com.

Jan

1/22/09 6:38pm

I'm so sorry you're having such a terrible experience. I was diagnosed about 10 months ago, and fortunately, in the early stages. Just as fortunate is that my case is so far mild. That doesn't keep me from having down days though, because always in the back of my mind is the prospect that it will get worse. I try to stay positive though, and not let the disease define my life and who I am. I started a new job about 1 month before my recent 54th birthday, having voluntarily left the security (including a lot of sick leave) of a job of 19 years. My rheumatologist started my early on on Plaquenil and naproxen, with a starting kick of prednisone. I'm now on methotrexate too, with no serious side effects (a little thinning hair, though). On my own, I started taking about 6 grams (in divided doses) of fish oil every day, with my rheumatologist's blessing. According to some studies, fish oil helps reduce inflammation. I wouldn't worry to much about the Plaquenil and your eyesight. My sister has taken it for lupus for several years and no problems. My own ophthalmologist said he's only seen one problem in his 15 years of practice, and even then it was reversed after stopping the medication. One last thought, I make sure I exercise regularly, including yoga. I hope this helps you. This website has been great support for me, and I hope it will be for you as well. Hang in there.

misslisa

1/22/09 9:00pm

there heather,

Please remember you are not your mother! And start thinking of your own health just because you have the illness that your mom has does not mean that your progress will be the same as hers.

Also don't worry about your eyes, i did the same worring when i was on the plaq, but my eye dr. told me that in the 10 years she has been treating patients who took the plaq she has never come across anyone who has had problems from the medicine.

She also told me that statisics show very few people have any problems from the plaq.

Learn all that you can about ra and relax, because worrying will just make it worse.

have you tried lidocaine patches to put on your knees or knuckles? This helps mine better than pain pills or any other creme or medication.

take advantage that your mom is going through the same thing you are, it is always nice to have someone who understands your pain and you don't have to explain what you are going through.

And you have to get over the "why me" sooner or later, it is ok to have a pity party every now and then, but don't feel sorry for yourself all the time you are no different than anybody else who is sick. trust me i know i have more wrong with me than you can ever imagine or go through. i have lupus, ra , oa, scleroderma, neuropathy, fibromyalgia and the list goes on to about 30 or so different illnesses, syndromes, diseasees. And my pain started in the second grade, so if i can get through a lifetime of my problems so can you.

I am not blessed that i am ill, but i am blesses that i have it and not my child or my siblings or my nieces or nephews and i would rather it be me then them.

I know it is a horrible thing to have and deal with, but you will be ok just live your life the best you can that is really all you can do is make the best of what life gives you.

I hope that you have good drs. also you can have lupus with a negative test result, so keep track of that and learn about lupus also.

hope today is a good day for you.

miss lisa

Lene Andersen, Health Guide

1/22/09 10:52pm

This disease sucks. It does. I've had it for over 40 years (since I was 4) and sometimes, I wonder what my life would have been like if I didn't have this blasted thing. But most of the time, I try to focus on what I have, look at the positive and y'know? It's given me a lot, too. Resilience, strength, a dark and twisted sense of humour and loads of really good friends who love me for who I am, just the way I am.

You're new to this and processing the feelings about the diagnosis will take time. You need to grieve the loss of health and I'd suggest finding a counsellor to help you work through things. And while you're at it, consider finding a different primary doctor - you need someone supportive, who'll listen to your concerns. The good news is that you're being treated, you've found a community (this site has terrific and supportive members) and you're talking about how you feel. Your mom's experience doesn't have to be your experience, treatment options have changed massively in the past 10 years and it's possible that once the meds kick in and your RA is suppressed, you will be able to get back to focusing on your life with the RA just muttering in the background.

Hang in there and please keep writing SharePosts.

Angry Daughter Being Punished

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