Do you feel that having Scleroderma has changed you as a person?
Posted 27 July 2008 - 01:30 AM
Do I appreciate things and people more because I wonder if there will be a time in the not so distant future when I will have to be less involved because I will be unable to participate? I do find myself setting little goals like - I just want to be well enough to see my children do certain things and then I won't be a pig - what ever happens ....... I got to be ok for this particular milestone or goal
Every medical test shows a slight change, a little more damage somewhere. So I see things could go south at some point and I worry that I won't always be able to jump in the car and drive to my son and take him out for lunch or go and get manis and pedis with my daughter. I love being able to do that and do not want it to ever stop. But I also know that I have cancelled on both the kids because some days I just could not get myself together to do it.
I never saw myself as someone who did not keep appointments or who was always canceling. I did not see myself as the kind of mother who was always late. Who could not be counted on to definitely make plans. Who was cranky. Whose kids asked about her health. I kept this disease from them for almost 10 years and only when my daughter confronted me in tears telling me she knew I had a secret (she overheard something when she was a senior in high school and by that time I was ready to tell her - she was worried that I had cancer) and demanded to know what it was - did I even tell her. And even now it is really only very generalized and she does not know how complicated it is and can be. I do not tell them very much and keep it very up beat and positive. They do not need to know it can be fatal - unless it gets that way.
I have always been extremely protective of my kids psyches' and that part of me has not changed - disease or no disease. So I guess that part of my personality - the mothering part that is protective has not changed. But a lot of my personality seems to have changed. I think. Sometimes I think it has made me more positive and I do not worry about small stuff. I am more understanding of other people. I seem to be able to give people more slack - sometimes.
But then again at times my training as a lawyer comes roaring to the surface and I have trouble suffering fools. So much for the disease mellowing me out too far. Those times I am a raging cranky lunatic. (I am just hoping that is the disease - if that is not, boy is my husband getting material for a great book on menopausal women!)
Is it in part the meds? Being in pain, being constantly tired, being tired of being sick? Back to my question -- HAS SCLERODERMA CHANGED YOU AS A PERSON? Not all my changes are bad - some have served to make me take stock of my situation. My next goal is to take a 2nd honeymoon with my husband in 2009 to Italy for our 30th anniversary. I am scared about my health and how well I will feel during the trip, but I have promised myself that since this is the trip of a lifetime - to be married to someone I still love for 30 years is a gift and I want to go and enjoy every second of it. I will have to pace myself and just eat carefully and get rest and bring a suitcase full of meds, but that is my next goal. I just hope I can do it!
Chocolate, It isn't just for breakfast anymore!
Posted 27 July 2008 - 03:55 AM
Everything you said, I think I can relate to, have felt and gone through.
Has it changed me? Yes, physically and mentally. Did I become a cranky person? Oh yes I did. I went through a period, and it was a combination of things. My daughters were teenagers and becoming assertive adults. I was going through my SD changes and felt like I was always yelling at them. They didn't like this person I was becoming, neither did I. I had to stop, and look at myself, and the situation. Was I yelling at them unnecessarily? Was it the scleoderma and my over-reacting? Why was I even yelling? Would I like the person I had become? The answer was "No". So, I stopped yelling and getting angry. It helped my state of mind to see things differently. I became a likeable person again. I, even liked the person I became.
My daughters, for a while, resented my constantly asking them for help. They didn't want to be caregivers. They wanted to feel free and not tied down to a handicapped person. And, I didn't blame them. So I stopped asking them to help me with every little thing. This was my disease, not theirs. I learned to do a lot of things differently and manage without some things. I realized my days with them are numbered because they're in college. One's already moved out and the other still lives at home. I appreciate my time with them.
I also realized I was a person before I had children and before I had SD. I'm a different person now. I've developed a new life style that fits me and new hobbies to fill my time. I plan on joining groups and participate in social outings! Because I was an individual before scleroderma and I still am.
Smurf, I hope you and your husband have a wonderful and fantastic honeymoon! You are blessed to have a beautiful family! Enjoy and appreciate each and every moment.
Posted 27 July 2008 - 05:24 AM
I wanted to mention one more thing. I'm a mother too and understand how we want to protect our children by not telling them everything that's happening with our condition. But, now that your daughter is older, (I don't know the other ages) I would suggest being honest with her. You don't have to tell her detail by detail. I would suggest telling her if anything serious develops, you will tell her, so that she doesn't think the worse case scenario or that secrets are being kept from her. This way she can rest easy in the meantime. Also having a talk withher about your condition would make her feel like a partner, not an outsider.
Posted 27 July 2008 - 06:07 AM
I think this disease has made me much more compassionate towards people and situations. I mean I was always somewhat of a "sap" for a sad story and such, but I now feel the need to fight for causes not just think about them. I find I don't really care if my hair is thinning, my legs are sticks or whatever. I was never a vain person from the get go and I believe that prepared me for the little things that play upon the physical appearance.
I was an angry person in the beginning, but in retrospect looking back, my anger was caused by everyone else around me being in denial of the situation. I felt like the only sane one in a house of lunatics.
I now know my limitations, whereas before there were none. I'll go one step short of thinking I can complete it all. If I don't, I pay for days. I've learned not to be proud when someone offers to bring the cart back to the store or open the door.
I do miss the gardening, even mowing the lawn! All in all, with this condition I am still somewhat content. I just don't think I want anymore surprises in the near future though. Just keep it status quo and on the low.
It is what it is...........
Posted 27 July 2008 - 01:37 PM
Having said that, my life has been dramatically altered as I started becoming ill...in 1991. As with so many of us, I went from working a fulltime job, which was labor-intensive...to "retiring" long before I had planned.
Yet, as hard as it was to resgin to no longer being able to work, I am so grateful I don't have to push myself to get things done at home. I do what I can when I can and "save" the rest for later.
My relationships withfamily and friends have greater depth/quality, as we all realize how precious life really is. I only wish I had the stamina to "do" for others as I used to love doing, but no longer am able. I always loved cooking for friends/family, but I get too worn out... When I do, it takes a few days to recouperate! I've just come to the realization that I can do only what I can do...and I appreciate the fact that my friends and family are aware and understanding.
As much as I used to love camping, going witha group just doesn't work for me... I get too worn out. If it's just me and hubby, we each know what the other can/cannot do and are able to enjoy ourselves...otherwise I would feel I am not holding up my end, when it comes to cooking, cleaning, etc.
Posted 27 July 2008 - 01:40 PM
Remember as a kid watching disaster films and wondering who you would become? Would you be the hero, working class in a polyester suit who enters the burning building again and again. Would you be the brains cooly directing the wounded to safety whilst things explode in the background. Or the comforter tending to the bewildered. Perhaps the lucky escape who watches on realising the closeness of the call. Let's not forget the hysteric, screaming panic making every fist near enough to strike clentch from want.
When the huge scleroburgh sunk Amandatanic in painful waters I got to find out which one I would become.
I was the hero, smiling bravely whilst talking about the dreaded disease, how it may ravage my body in a matter of fact way confirming that I would carry on regerdless. I was the brains cooly informing managers and my staff of the situation and taking it in my stride. I was also the comforter assuring family and friends that all would be well and initially being told there was no internal involvement the lucky escape evaluating the close call. Mostly however the hysteric, one who is given to being hysterical overwhelmed with frustration whilst I adjusted to my limited mobility and the realisation that it may never return to what it was.
Have I transended to the higher eshalons where the tedious. the hum drum, the ordinary have somehow become appreciated, praiseworthy, significant? No what sucked pre scleroderma still stinks now.
I can't really say whether scleroderma has fundamentally changed me as a person, it won't be a full year until next month so it's a little early for me to evaluate. If I was brave I'd ask others.
Life has changed though, 20 year career and dream job gone, social life gone, ability to be independent gone, ability to bathe/shower gone, ability to make plans gone, ability to earn an income gone, ability to be a domestic goddess gone.
Despite all this I don't doubt for a moment that other things will come to replace what's gone......bigger, better,...... we can rebuild her!!!!!!!!!!!!
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Posted 27 July 2008 - 02:23 PM
Quality of life has become more important to me. I would hear repeatedly during my youth that we are supposed to live our lives day by day. I never thought I'd master that concept. Sclero has surely helped that to come to pass for me as I surely have to not only take things day to day, but hour to hour and sometimes moment to moment. Gone are the days of planning months, weeks or even days ahead.
When I first became ill, my sons were 14 and 11 (they are now 17 and 14). I didn't even understand what was going on so of course they had no idea. I would be at the football park volunteering from morning to evening on Saturdays not understanding why I couldn't get out of bed on Sunday and why I ached so badly. When I ended up in the hospital days before holiday that year, which was very frightening for me. I couldn't fathom spending holiday without my children or them having to spend it at the hospital with me. It became more important for me to spend time with them than money on gifts and things.
As they have gotten older, I have explained the disease to them in more detail and that it can be life threatening. Being a single mother, I also had to show them where my list of doctors and medications are in the event something happens and they have to be the ones to seek help. That was very hard for me. A year or so ago my girlfriend called me to tell me a special about a lady who had scleroderma was on. I was excited because as we know this disease doesn't get the recognition it deserves. Her case was far more progressive than mine and it freaked my oldest son out. That was when I sat them down.
The few times I have been hospitalized, we have tried to shelter them for the details because they get so worried. My mother retired a couple of years ago and we moved in together. While it has been challenging to have two grown women in the house (especially mother and grown daughter), it has been such a blessing having her here. She cooks daily, gets the boys where they need to go when I'm not able and helps me when I'm not well. TRULY a blessing!!! I know it's hard for her as well watching me suffer on a regular basis. Sometimes I don't let on to how Iâ€™m feeling because I know she's worrying 24/7. She really got worried when I recently had the muscle weakness and couldn't drive or barely get around. It hurts to see everyone so concerned so I do find myself concealing some of what I call my "daily aches" or my more tolerable discomfort and pain.
I have a good network or family and friends who care and support me. For the most part they understand my limitations and support me with them. As a part of my changes, I've tried to eat healthier, lose some weight and put myself in the best position mentally and physically I can be in to fight this disease. It's not an easy process, but I'm up for the challenge.
Posted 28 July 2008 - 02:27 AM
Barbara aka relicmom1
Posted 28 July 2008 - 04:20 AM
This disease has changed me in that I know the end for me will be a lot sooner than I thought it would be and having Sadie pass yesterday really puts it in perspective. I feel bad that I am so tired and so sick every day and I really think my husband believes I'm going to go into this magic remission and will be all back to normal because I'm coming on some 2/3 year mark of when I got this disease. We had company at the lake this weekend and I tried and did everything like I used to do, meaning do all the cooking and running. Well now today I am paying the price so terrible that I could just cry I hurt so bad. This is where I need to kick myself into reality and realize that I can't do this anymore because of this disease.
I also used to be alot more social and now I just want to stay at home where I know I can rest and not run into a situation where I'm not going to be able to handle physically. To be "retired" at my age and to have my income change quite dramatically on what I used to earn will be a challenge that we will have to just deal with but it's hard. I was at the top of my game and the top agent in our region and now I can't do that. I loved what I did and I loved the people. I have to be grateful and I am that I was able to get disability as I know there are many here who haven't, but yet I still miss what I did. My parents were recovering alcoholics who lived by the "one day at a time" and I now do that with this disease. Different disease but same motto I guess. I will continue to fight this disease in any way I can but I'm running out of options. The scary thing for me also is having my doctor watch for cancer to raise it's ugly head at some point in this disease and knowing I will have to fight that also. The worry of wondering if it's there already is something I deal with every day and I know that this wears on me. I am just so thankful that I have this forum to vent and talk about these things and to be able to share it with people who know what I'm going through.
Warm hugs to all,
Posted 28 July 2008 - 05:42 AM
I'm so sorry you're feeling so badly today, both physically and emotionally. Let this just be a "down" day, and not a normal day. I gave up crying months ago, when I realized I was crying alone. No matter how weak we feel, we need to tie them laces and pull up those boot straps and become the masters of our destiny to any level or degree we can. You can't continually focus on what might be, because it is NOT now. Constantly waiting for the other shoe to drop is like wishing your years away......please don't do that to yourself. Okay, you did it all at the Lake this weekend. Now you know better. Next get together, pick up salads and lunch meats or half trays of your favorite hot foods and who cares if the carpet needs vacuuming? Not me, that's for sure. Let them walk in my shoes and tell me the carpet matters . As far as income, I'm alone and with disability, by income was slashed by 60%. I always considered myself "low maintenance" anyway, so I'll make do; what choice do I have? If I can't, I'll find a way. You can and will too; just takes time to get over each little hump that comes your way. Sometimes those humps are never ending, but when you look back, you've gotten over quite a few, haven't you ? We never give ourselves credit for the triumphs we have overcome, but start patting yourself on the back once in a while .
It is what it is...........
Posted 28 July 2008 - 08:55 AM
You are "wonderful" Everything you've said is true. We should learn our limitations and work with them. I wanted to show my family and friends that I could still get around and do things the same (almost). Ofcourse, I learned very quickly that wasn't the case and even with the limitations no one thought any less of me. And we can't dwell on things that "might" happen. Cancer isn't a certainty with autoimmune diseases. We may have a greater chance of getting it, but it can happen to anybody.
Since being hit with all of these immune diseases, I feel I have grown more spiritually and emotionally. I have also learned to appreciate people more and enjoy the world around me. Actually, strange as it may seem, I think I'm a better person now then I was before the mixed connective tissue disease.
Thanks for putting up with me!!!!
Posted 28 July 2008 - 10:27 AM
But yeah, I've changed. I would say that I've changed to the "good" direction though.. Just the normal cliches; I appreciate health more now and can understand people with conditions like these. I've become more patient and I have knowledge about these kind of things now.
I really feel like I can appreciate the lil things better now, and I understand what living in a moment means.
I've found my future career and the things I want to study because of this. And that has changed me a lot. It also has given me a lot.
Normally your self esteem goes down when you get a disease which affects your looks. My self esteem has probably gotten just better.
Posted 28 July 2008 - 05:46 PM
Thanks for you words. If there is an up side to having a disease you certainly have managed to find it. You also never know how your particular disease will track. You may have a very mild case and manage quite nicely. I will hold only positive thoughts for that outcome for you.
In addition, based on what you wrote you seem to have a high degree of maturity and empathy. You have what I call an "old soul". You understand things beyond your years. Having that and being positive can only benefit you as you grow and reach adulthood. You have managed to deal with havig the disease and use it to help you make a career choice.
I am very impressed by all that you said and admire your choice. I wish you health and strength to carry out your plans.
Chocolate, It isn't just for breakfast anymore!
Posted 29 July 2008 - 02:24 AM
I feel worse for my husband, as it's changed his life as well. He didn't sign up for this when we got married, but being the incredible person he is, he's in it for the long haul and couldn't be more supportive. I feel sad for him that he married what he thought was a healthy vibrant woman. I watched him play a show not long ago, (he was in MI and it was broadcast live on the net) and as I watched him I cried, seeing his band mates and knowing their wives were healthy, working, child bearing women and there he was having me to deal with. I know he doesn't see it that way, but I do. I actually mourn more for him than myself.
On the upside, I definitely live in the moment more and do what I want when I want. I don't stress over work, commuting, going out to dinner more than we should and like Tru said, having a clean carpet. I do what I can. I make sure there's food on the table and if I can't keep up with the laundry or scrubbing the bathroom, my dear husband is right there to help me.
So, one day at a time. It's slowly sinking in and getting easier as time goes on.
Posted 29 July 2008 - 05:39 AM
I hesitate to post this as I am a newbie and not yet diagnosed, but here goes:
How can it not change oneâ€™s lifestyle? Circumstances change dramatically, but I believe our essence or core (the you on the very inside) is not changed, only finding ways to handle the situation, yes, and that may result in behavior that has not been typical, nonetheless, you have to change the way you live your life, which is difficult but can undoubtedly lead to new insights, higher highs and at times lower lows because you have a deeper understanding and perspective of life on many levels.
As far as living one day at a time, really what else can anyone do? Sometimes it is one moment at a time, and thatâ€™s okay. All we have is the day we awoke to; I say live accordingly, if you feel awful, donâ€™t push it and do what you can to make yourself comfortable, if youâ€™re feeling good partake of an activity (that youâ€™re up to) and canâ€™t enjoy on awful days. I am new to this board and do not see a rheumatologist until August. however, many years ago I had a doctor who put me on disability for a year to allow my immune system to get stronger. I was mess, and had the Mommy guilt going on, but did what I could with my kids. My boys were 7 and 10 (now turning 21 and 24, yikes!). I would get propped on the couch (pretty much my permanent spot back then and uh seems to be going that direction again) and they would spread a sleeping bag on the floor, with snacks and goodies and we would watch movies. Were we at the park? No, was I at one of their soccer games? No, were we together having fun? Yes. My little one used to come into my room with a deck of cards and we would play games for a while when I couldnâ€™t get out of bed. Not optimum but stillâ€¦ time together. I remember opening my eyes one afternoon and my son was climbing up on my bed with backward baseball cap, a pen hanging out one side of his mouth and he was dealin the cards quick. I remember thinking my sonâ€™s gonna grow up to be a bookie or a grifter running cons, he sure looked cute though.
You lawyers are a crafty bunch, and I can say this with some authority as I have worked with them for over 20 years, you look at the set of circumstances on the table (and may exclaim, but assess the situation at hand and determine the best course for the best outcome under that set of circumstances.
Now I am off to work and if I were to follow suit with what I wrote above, I would have called in sick today, however â€¦
Take good care!
Posted 29 July 2008 - 11:59 AM
* way more patient with family, doctors, myself, and the disease
* much more protective of my own mental and physical strength
* less concerned with the opinions of others
* more empathetic to the pain of others - pain is pain
* less concerned about "stuff" - who has what and how much - (we'll get that new carpet someday)
* more patient with the strange behaviors of others - if "getting their anger on" is their coping mechanisms, what do I care?
* more dependent on my husband's state-of mind - if he is stressed, I feel lost. I have to work on this one!
I wonder if this is the list I would have written earlier, when I was still grieving over the impact on my life plans.
I wonder what the list will look like 10 years from now.
Posted 29 July 2008 - 12:10 PM
I've become a very list driven person. Never was before. Before I only wrote lists to organize my thoughts/activities. Never to check off progress....
But now, I constantly write the smallest tasks on paper cubes - those blocks of small size paper for jotting notes. Writing the tasks down gets them off my mind and I feel like I am moving forward when I tear a page off and throw it away.
Posted 29 July 2008 - 02:11 PM
Posted 29 July 2008 - 06:59 PM
I am by no means perfect, but I think that I have become more real. It does not mean that when I spot someone who is abusing my good nature that I don't let them have it - I do. I still do not suffer fools very well. That part of me is still very much alive and kicking. But in general I try to work through my disease, keep on trucking and appreciate what I have rather than wish for what I don't have and resent what I cannot get. I value my family and friends more and am more open with my appreciation. I know that time is finite. I know that pain is real and no one can judge what hurts someone else. I try to be informed but not focus on my disease as a vocation.
If it is possible the disease has an up as well as an obvious down side.
Chocolate, It isn't just for breakfast anymore!