About

Hi, and welcome to my page! My name is Lorna, I live in Minnesota, and if you found me you probably are living with RA, (Rheumatoid Arthritis) Sjogren's or Raynauds. Perhaps you have another Autoimmune disease or maybe you are a blog hopper who found my page and are wondering what in the world is this lady talking about! Everyone is welcome here.  

(Note): Since I wrote this back in November of 2012 I have been diagnosed with Lupus. My Rheumatologists have long suspected it, but would not comfirm it without a positive blood test.




The road has been long and will continue to be full of ups and downs. There are good days and bad days.  I will try to be as honest and open as I can and not sugarcoat things. Feel free to ask me anything you want. I will do my best to answer you.

I believe there is strength in numbers, and there is no worse feeling in the world than to feel like you are alone in this journey. You are NOT alone. There are many of us out here, please reach out and talk to any of us. 

I am a reluctant blogger. I tend to hold everything in, one of the reasons? A lot of people don't really want to know how you are doing. People get bored of hearing how sick you are and eventually stop asking or listening. Some people hear the word "Arthritis" and minimize the condition. After much thought and 25 years of virtual silence I decided to share my story with you. It is my hope that something, anything I say will help you, and others who come after us. Reading others stories/struggles has been a great help to me.

I am a wife, to the best husband I could ask for. He helps me get to appointments, he pushes me to stand up to doctors that don't listen to me.  He loves me no matter how bad things get. He has been my rock through all of this.

I'm also a mother, my youngest son grew up with all of my health issues, it was not easy. There were times I could not be at an important event, I had to utilize friends to get and pick him up from school on the really bad days, but we made it through.  Now I do my best as a grandmother (Nana).


I'm also a dog mom, we have a 12 year old golden retriever/lab cross who keeps us busy. He is starting to have health issues as well. He keeps us up at night and sleeps during the day. It's almost like having a newborn.



I'm a health advocate, a blogger, a trained volunteer for the International Foundation for Autoimmune Arthritis.


You can connect with me here, or on Twitter. My twitter is @lifewraisapain. I am also on Facebook, Pinterest and Bloglovin. Look at my contact page for all my details.

I worked on and off through the years until I was no longer able due to Autoimmune Arthritis.
I spend my time now trying to raise awareness the best I can for RA, Sjogren's Raynauds and the other Autoimmune Arthritis Diseases.

I take multiple medications daily, and have had more surgeries than I can remember but I have still managed to live a life, work, raise a child, function in society, now I am a part of my grandchildren's life. My message in all this is a diagnosis is not the end you can still have a life.


I love to watch Nascar, Indy car, Hockey, read,write, Blog and read other people's blogs. When I am up to it, I enjoy going to dirt track races. Although it has been many years since I have done that. I enjoy spending time with my husband and the rest of my family. I am not a fan of the long Minnesota winters so you can bet I'm glad when they're over!



I love to spend as much time outdoors as possible and visit places that have lakes, waterfalls, such as Duluth Minnesota as often as I can. Everywhere I am I have to have music playing, music can change my mood in a matter of seconds. We watch a lot of movies in our home, I enjoy all kinds. 

I was diagnosed with RA in 1988, Raynauds in 2002, and Sjogren's in 2005. Doctors have said I have Fibromyalgia as well, but there is no way of knowing since most of my symptoms mimic symptoms of Sjogren's or RA and Raynauds.
One Rheumatologist has commented he thinks I may have had RA since childhood, based on one arm being bent in a strange way. I really don't know. I remember crying with knee pain but it being chalked up to "growing pains" when I was small.
I have always been tired, but never really thought anything of it.
I think more than anything else the fatigue is the hardest part of these diseases to cope with. I find I can push myself through the pain most of the time but the fatigue is crippling.

The most important thing I have learned after 25 years, is to remember I am still myself inside. I may have a disease or several diseases, they will never have me. I try to live each day to the best of my ability. Some days I accomplish very little and that's okay, other days I accomplish a little more and that's okay too. I hope if you are reading this, feeling guilty that you aren't doing more. DON'T, you are doing the best you can. 




Here is my onset story, I posted this in a previous blog entry, but I decided to post it here as well. 

It's funny how words stay with you. Those were the words spoken to me, by my family doctor back in 1988. I didn't go to the doctor often. In fact up until this point I had been pretty healthy.

That day I had gone to her for a sinus infection. Those were and still are a common occurrence for me. 

She examined me and she did some " routine blood work. "Nothing out of the ordinary. 

When I think back a little bit. Prior to this I had visited the E.R. My arm had been aching at work and I could barely lift it.

The doctor that night diagnosed me tendinitis.  He told me to ice it, take some anti inflammatory medication and rest when I could.

 I didn't connect these events at that time. I was too busy working long hours too get any rest.

Then several weeks later. I noticed the middle finger on my right hand was swollen. It had started to bend, but again I was busy with work, and being a mom, I was only 24 years old. I didn't have time to be sick

So back to the doctor's visit, she handed me the prescription for the sinus infection, then told me when we were heading out the door. Oh by the way you have Rheumatoid Arthritis. I said what do I do for that? I mean I had no idea at the time.
 I had only heard of "arthritis" you know, the kind old people get. I hope you can hear the sarcasm here.

She looked back told me "just take an aspirin, you'll be fine" and left.
At the time I wasn't panicked I thought okay if she isn't worried about it then I shouldn't be either. Boy was I wrong.

Within a week of seeing her, I was sent to a Rheumatologist by another general practitioner who could see I was in bad shape. He pretty much echoed her words. I was so weak and exhausted I ended up in a wheelchair. 

What began with a finger had now moved to my knees and wrists I was dealing with a pain I had never felt in my life. 

I couldn't sleep. I had lost my appetite. I was getting depressed.

I decided I could either give up, or go see someone else. So i was sent to a new Rheumatologist for a second opinion.

 This visit was completely different. I was examined. Blood work was ordered, he decided to put me in the hospital. 

He started me on a cortisone I.V. that day.

This  particular hospital also had also had a two week educational program about RA.

Each day was a different class. One day was a physical therapy class, the next occupational therapy. I was so tired I didn't want to go.

I remember one morning going down the hall on the way to the swimming class. The other rheumy who has basically told me it was nothing. The look of shock on his face at the condition I was in. He didn't say a word to me. 
After the prednisone, came every anti inflammatory you can name. I was started on plaquenil also. I couldn't tolerate any of the anti inflammatory medications.

Then came penicillamine, gold shots, methotrexate, methotrexate injections, I couldn't tolerate the methotrexate in either form. 

The other medications, didn't have any effect on my disease. This week i have started taking arava. So far I'm tolerating it well.

My life as I knew it changed that day. I was always an active on the go, full of energy person. I always had friends, loved to go dancing. 
As I sit here now both of my wrists have been surgically fused. They fused on there own from the RA at the beginning, then were surgically fused to take away the pain.

I had my right knee replaced in 2010.

This year they had to attempt to repair the nerve,  so i had surgery again. i have foot drop and tingling in my toes but at least i can walk.

I have also had cataract surgery, my optometrist believes it is due to past prednisone use.

I no longer live in the same area that I used to, and I'm also remarried. The people in my life
only know the person that I am now not the person that I was.

I find it very hard to meet new people. Especially when you're exhausted and in pain and most people don't understand, or don't even bother to find out what's going on with you.

I find when you are too sick to go somewhere, instead of people being understanding they stop inviting you.

It's bad enough to be in pain and tired all the time, but for people to make you feel guilty about it, I think is even worse.

The people in my life who knew me before my illness stayed with me after.


Most people in my life now don't even try. Not even a phone call to ask how I'm doing. I don't want pity. I just want to be treated like a human being.

11 comments:

  1. I have been living with Lupus for 14 years and have always had some RA but RA is quickly becoming my primary issue.

    I feel for you and will be praying for you.

    I am following you.

    Vicki at Notes From A New England Nana

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  2. Thank you for your thoughts and kind words! Your words helped a bad couple of days feel not so bad. :) I'm sorry you are going through the same issues. I hope you have found the right treatments for both RA and Lupus.
    I will be praying for you too.
    I will read and follow your blog as well, I enjoy reading other blogs especially ones not related to Chronic Illness. It gets my mind away from it for a while. :)

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  3. So thankful you connected with me. I'm positive we'll be great friends!

    My prayers and love are with you. This disease is debilitation and hurtful each and every day... But with God's grace, we're able to fight it. Can't wait for our NEW bodies in Heaven. :)

    XOXOXO,

    Kenz

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    Replies
    1. My prayers and love are with you as well! Thanks for taking the time to stop by, I know how busy you are by reading your blog!
      I agree this disease is a horrible one, nobody should have to deal with it, we are strong in mind and can fight it together!


      *Gentle Hugs*

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  4. My daughter is 29 years old, she was diagnosed with RA when she was 18. She has a severe and aggressive form of RA. She has monthly infusions. She has two small children, a son 2 and a newborn daughter. As a mom
    of a child with RA, I can't tell you how sad this disease makes me feel, for her. I would gladly trade places with her, so I could give her a life without pain. Autoimmune diseases run in my family. I have 5 sisters and everyone of our children has some form of an autoimmune disease. Thank you for your inspiration and talking so freely about this horrible disease. Lynn @ Turnips 2 Tangerines. I live in Northern WI and I'm beginning to think that Spring has forgotten about us this year:)

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    1. Hi Lynn, I'm sorry to hear about your daughter. Her story is so much like mine. I was 23 and with young kids. Mine was and is aggressive, I can relate to what she is going through. I imagine she had to go off the medication when she was pregnant. We are likely on the same medications, the good thing with the new medications, they can work well. I understand how you feel as well, as a mom and grandmother (nana) myself, I can't stand to see any of them in pain. Autoimmune disease seems to have a hereditary component in mine as well. I have a cousin with an autoimmune disease. I pray everyday my kinds and grandkids don't get ill. I hope all of your family members find some sort of comfort and get the relief they so deserve. I'm sure the fact you are there for them is a big comfort. Family support is half the battle.
      Spring? I don't remember what that's like lol We had snow this afternoon. I'm near Fargo North Dakota. We're supposed to get near 70 on Friday though! Thanks for stopping by, I hope to "talk" to you again, I will stop by your site later on. Have a great night!

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    2. Lynn I am around your daughter's age and have had RA since I was 2. If she is interested in connecting with others in her position I would love to talk with her. I don't have children yet but that is one of the things I am most concerned about. There are tons of what ifs... will I flare up during pregnancy, will I be able to pick up a toddler, etc etc...

      I hope things are working out in her favor. I know it is never easy!

      Here is a post I did about my journey with RA:
      http://iammegandsocanyou.blogspot.com/2013/05/i-am-face-of-arthritis.html

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  5. I am 28 and was diagnosed with RA at 2. I am finally learning to accept that this is part of who I am and something to share instead of hide. I created a 30 before 30 list and one of the things on there is to get more involved in Arthritis Advocacy.

    I found your blog through the Weekend Social Mix Blog Hop and your title definitely caught my attention.

    I would love if you checked out my first and so far only RA related post. I plan to do more but haven't quite figured out what angle I want to approach it all from.
    http://iammegandsocanyou.blogspot.com/2013/05/i-am-face-of-arthritis.html

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  6. I can relate to your story in so many ways. They thought I had RA, Lupus, and Sjogren's, but instead I have Lyme Disease. I love how you said that you still try to remind yourself that aside from all the diseases, you are still you on the inside. There are so many times where I feel like I'm just an empty shell, but I know that God is using this for His good. I'm not sure about you, but if I wouldn't have finally gotten my diagnosis of Lyme Disease, I wouldn't have met some of my very best friends...people with Lyme Disease who actually know what I'm feeling (there's so much power in that).

    I completely understand how a disease can really test relationships, because I too, have really found out who my "real" friends are and I definitely don't have many.

    Hang in there! I'm so glad you have this blogging outlet. I'll be praying for you!

    Many blessings!

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  7. Hi Lorna,

    I found you via a blog hop and feel your pain literally! I was diagnosed with Psoriatic Arthritis at the tender age of just 13. Psoriatic Arthritis presents in the exact same way as Rheumatoid does, aggressively! Because Psoriatic Arthritis doesn't show up in the blood tests, it took them so very long to diagnose me and during that time the damage took hold. My MIL was recently diagnosed with the exact same condition as me and it took them over 6 months to diagnose her too. I'm in England so not sure whether that's just the NHS being the NHS.

    Once I was diagnosed at 13, things pretty much stayed the same until the birth of my 3rd daughter in 2004. It spread like a wild fire from just the 1 fused finger to literally e.v.e.r.y.w.h.e.r.e. in my entire body. In fact, there isn't a part of my body that doesn't have it more.

    I'm now 32 and am physically disabled. Daily life is a massive struggle especially since I have 3 kids to care for and during the time it was getting bad I decided to end my marriage too. So going from needing a full time carer to being disabled, alone and single was the most darkest time in my life.

    I used to be such a fit and active person having owned horses to barely walking a few steps in agony. That was such a tough transition and was accompanied by depression, understandably.

    Moving on, I'm now happy with my partner of the past 3 years. He's my full time carer and because the disability affects getting out and doing what most people would class as 'normal' I decided that I needed a home based hobby. Therefore in Dec 2011 I started baking and haven't looked back. I even blog everything I create as I wanted to look back one day and see how far I'd come along.

    It's really hard to bake as a *LOT* of my joints have also fused due to the damage. However, my doctors won't do anything about them once they get to that point. And even if I get a flare up and try and see the doctors ASAP, they're always too busy to book me in so in reality it's their fault for letting me get that way since the damage takes hold in as little as 1 week in my case.

    I'm also on the Methotrexate (MTX) and have been on the full dose of it for many years. I realise you're not on it anymore but wow, doesn't all these drugs just zap whatever remaining energy you have left? I'm on an array of painkillers: a patch, anti-inflammatories, and dihydrocodine as well as the MTX, Enbrel injection and a few other meds to stop the other meds causing bad side effects.

    Don't get me started on other people. The amount of times I've parked in a disabled space with a valid disability badge and people have made snide remarks is beyond me. I've been called lazy in the past and some old man even walked up to me and told (not asked) me to move because I was taking his space up and those spaces were for 'disabled people'. I showed him my badge and explained and he started a big row with me in the supermarket car park stating that I was too young to be disabled and that I should move that instant! He then followed me around the supermarket afterward. Argghh.

    I can certainly understand relationships being strained with any auto-immune condition. People that don't fully understand what it is like to have this condition can often think you're being lazy when in reality it's the condition and the medication that really just takes its toll on you, your state of mind and your body. It's such an awful condition to have. :(

    Anyway, I'll stop rambling now. It's great to have found you and your blog. I'll be following you on here from now on.

    Take care. I'll be thinking of you.

    -Lisa.
    Sweet 2 Eat Baking

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  8. Hi, Lorna.

    I just found you - how? I think it was through another blogger's list of favorites and I think I saw her on a blog hop list. Can't remember but it doesn't matter. I also have RA and I am so touched by your story. I am so pleased to "meet" you and I will be back to read more!

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Thanks for stopping by! I appreciate all of your comments. I try to answer all of them. Sometimes life takes over and I can't get to it right away. Please don't be offended. I would love for you to leave your blog address or social media links so I can follow you or contact you. Thanks again for taking the time to be a part of my life, you are awesome!