Jenny made an excellent comment in response to my post, An Autoimmune Tornado Has Left Me In Oz:
"...You'd 'return' to a disease-free world so readily...and I'm not sure I would. I've thought about it, especially when praying. Would I like to be completely healed? During a Catholic mass, we pray "only say the Word and I shall be healed", and every time I ask myself if I would really want that kind of healing. I'm not positive I would, truly, because my conditions are so much a part of me, my life, my goals, my personality... I also wonder if that has something to do with not really knowing a life without these conditions in some form - do you? Did you have a "normal" life before or did you always have symptoms? Is that why you would be healed, b/c you know what a normal life is? It's just interesting to me the different ways sickies feel about being sickies...or remaining one I guess:)"Well, yes, I do remember a life without Sjogren's syndrome, and I'd gladly return to that life in a nanosecond. I remember having the energy to begin my day with a four mile walk, then wake the kids and get them ready for school and daycare. I'd work an eight hour shift at the hospital, then return home to cooking and cleaning and all those things that come with a family and a home. John was working full time and also going to school for his master's degree, so I wasn't the only one with a full plate. We both were also active in church activities and staying in close touch with our extended families.
I know what life was like without autoimmune disease, so I do know what I have lost. If I could return to that level of health, there is only one thing that I would change - and that would be to return to that life with the memory of what autoimmune disease did to my body, so that I could truly appreciate a healthy body.
I'd be interested in hearing what others think. Readers?
9 comments:
Julia, I did leave a comment, but something must have happened and my comment did not go through.
I stated that I understood what she (Jenny) was saying, but I did not agree with her. I wrote here before that I believe things happen for a reason (I'm still trying to figure that one out). I know that this illness has made me stronger in character, made me more conscious of what I'm eating and drinking, thus making me healthier as I've lost a good amount of weight. It has given me time to reflect (when not brain fogged, or as one of my friends said "we are cognitively impaired"), but would I prefer to live my life this way? Not even if I was paid millions of dollars!
This illness has forced me to give up my job, thus leaving me severely financially depleted, as my husband was unemployed for over a year, and there was no salary coming in. I have no social life because I can't keep up with my "so-called friends" roster of activities, nor do my finances permit me to go out. My phone never rings because if I don't call to see how they're doing,no one calls me to see if I'm still breathing....I's totally forgotten my ex-coworkers and friends. This illness has depleted me physically, mentally, financially, and spiritually. Most times I get up and routinely go about my day, but other days I feel like raging against the world for all the consequences of having an illness(es) I did not choose to have,and other days I can't be bothered to deal with anything as I can barely stand up and function, physically or mentally. So what would my choice be? Guess...
Hi Annie - I am not sure why I didn't get your original comment, so I'm glad that you posted it again.
And I hear you - this disease is expensive in more ways than money.
I would absolutely go back to the way it was before. My heart breaks a little bit every time my three year old looks up at me, with pleading eyes, and I have to tell her I can't carry her up the stairs. I hurt knowing that I barely have enough energy to raise my little sweetheart, let alone be able to raise more wished-for babies.
But as you said, I would most definitely want to keep the memory of what it was like. Having this autoimmune disease has taught me to be the stronger person that I am now. I fight every day to give my daughter a "normal childhood". One that she can look back on and not have to say, "I couldn't do that because Mommy was too 'sick' all the time"! And that strength has helped in so many ways.
-Kristen
PS-I LOVE reading your blog! It gives me a chuckle when I need it the most. It's comforting to read of someone else going through the same issues...not so alone.
Julia,
I haven't had too much time lately to respond or comment on many of your latest blogs, and I do read all of them . Though this one was a no brainer...since I seem to live a life which sounds very similar to the one u did when your children where younger (i have a 2 & 6 yr old) my life is still very much hectic on a daily basis and living with auto immunine diesease at the same time. I , in a heartbeat would go back to a life without this rotten thing that on most days robs me of who I still am inside but makes me what I am now on the outside. I even think about makin some crazy deals with the devil if just to do things with my kids that most normal moms my age can do. I take what I have to to get through the day , week , month and pray every night that the next will be a good one, Without needing help& feeling like I am double my age while my kids call mommy > We make the best we can of our situation, as for my story its hard not to think everyday about how i was before this and long to be like that again. Autoimmume D. came to me way to early in this life ! So YES I would be very quick to wrap it up and give it to my garbage can for x-mas :) Have a great holiday everyone! Be Well.
TAMI
Gee I didn't realize I was opening such a can of worms! Though it's nice to feel a part of the group:)
I think I need to clarify something though...I'm not saying I LIKE having SS and my other conditions. If I have never had them I wouldn't ask to. And I'm scared every day of my life about how I'll raise my future kids; it scares me to death what I might not be able to do. I'm also scared as I start a new and demanding career and head into my first busy season with mandatory 55-hour weeks (more like 70 sometimes) and more travel than I had anticipated - knowing so many people who had to give up careers as many of you have. But I can't live according to this fear. The fact is I can't "wrap up my illnesses and give them to my garbage can" (glorious as that might be), and have to work with them instead. By working with them, I've embraced them, and they've become a part of me.
It makes me think of 2 plays: Rent (esp. lines like "why choose fear"; "forget regret"; "no day but today") and in Wicked, the song "Because I Knew You" (the idea that despite all the pain caused by their relationship, having been in it helped make them better people). Maybe I'm young and stupid and my conditions aren't as progressed yet as they could be. But I've had these conditions my whole life and don't know any other way to deal with them. I went through a lot of rebellion when they were at their worst in high school and did things I'm already paying for now, but it's too late to change that so I try to have no regrets.
Hi Jenny - I think that you're on to something when you say "I try to have no regrets". I think that your phrase sums up nicely exactly what we all need to aspire to - a truce with our disease process. We need to live our lives without regret. Well said.
Wow. Being the mom of a teenage daughter with Sjogren's, I'd have to tell you that there is nothing I wouldn't give up to go back to the days before autoimmune disease. Not just because she suffers daily and her doctors haven't been successful in treating her, but because she struggles to do her favorite things. She is sixteen years old. Some days her hands shake so badly that she can't paint her nails. Prolonged use of Prednisone has left her uncomfortable with the changes she sees in the mirror. It took us three trips to a shoe store before she had the energy to actually try shoes on. Then there is the impact on her siblings. There are times that our family life is barely recognizable anymore.
It's really easy to have a big old pity party and dwell on the negative that autoimmune disease has brought to our family but there has been the blessing of changed perspective gained along the way. Good days are marked and celebrated. We are thankful for each one. I'm no where close to there being a truce, maybe that day will come. For now it's all about finding the joy in each day and hoping tomorrow will be better.
Erika,
I was diagnosed at 15, and fought my mom and doctors tooth-and-nail to do the things I wanted to even though they were bad for my conditions. I missed months of school at a time and even as a very good student almost didn't graduate because of my illnesses. I think that had to be the worst time in my life in terms of my conditions and state of mind, especially as I too saw my body change in ways I hated (not quite the same as your daughter but close).
But for me it did get better. I learned more, my doctors and I fell into sync, and frankly I think moving past puberty helped a lot, haha. Afterall hormones aggrivate conditions too. There's still so many problems of course and I had to make concessions I hated like taking an extra year at college, but I did graduated and still did a lot of the activities that were MOST important to me. Your daughter is very lucky to have you on her side, and I truly believe you both (and the family) will have more frequent days to celebrate in the future.
Jenny, thanks for the kind words. The fact that you improved is very encouraging. The hardest part of this is the unknown. Because she was born with special needs, has other physical issues (Ehlers Danlos and hypotonia), doctors aren't particularly encouraging about the future. Thanks for a little shot of hope!
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