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Thread: Looking for hope

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    Default Looking for hope

    I have been feeling better. Today I even help my parent mend fence at the farm ( it wasn't hard my 5 &7 year olds were also helping) it was nice on the way home I Though to my self is there anyone being treated with lupus that leads a " normal" life? With proper treatment can I go back to chasing my kids, helping bale hay, gardening??? Being active in general I would love to start going back to the gym or working out but then I fear I will throw myself deeper into a flare. It doesn't make much scence to go to the gym and then to sleep all day because you can't function. So what is everyone's thoughts

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Flower,

    I have been feeling good too. I've had some fairly intense stress lately with my father unexpectedly having to undergo heart surgery and in the end, having to have 5 bypasses done. Despite the stress and lack of sleep I experienced during this time, the flare from hell I thought I would get from this, never happened.

    Mom and Dad both have not been able to do work around the house during his recovery period, so I've been helping out and doing a lot of physical work, mostly snowblowing their driveway, as well as my own and Karen's after the numerous blizzards we've had lately. I cleared out some three foot deep wet and very heavy snow yesterday and thought I would pay dearly for it, but I didn't. Today, rather than being sore with lead blanket fatigue, I felt motivated in a way I haven't felt in a very long time. I went for a two mile walk today, and I still feel really good.

    I think, and I believe, that this is but one example of proof that there is hope for us. And, there is another thing that has happened to me that proves that you can still live a fulfilling life, and even pursue a dream while living with Lupus- Dad and I have decided to take our lifelong hobby of restoring classic cars in a new direction. We have always dreamed of actually racing a car since I was a kid. Well, we traded one of our restored project cars for a 225 inch Super Comp Dragster, and we are going to finally go to the drag races and compete rather than be a couple of spectators. I have SLE and MS, and I will be fulfilling a lifelong dream this summer with my Dad.

    I know this could all be put on hold, or even stopped overnight by my autoimmune disorders, but I don't care. I have SLE as well as MS, and next week I'll be starting the process of learning how to drive a machine capable of speeds over 170mph in the quarter mile. I never imagined that this would even be a possibility back when I was first diagnosed with SLE in '04, but now, it's really happening.

    Live your good days to the fullest as best you can. Let the satisfaction of those good days be the fuel that gets you through the bad ones. Have hope. Lupus can take away our dreams, but it cannot stop us from finding new ones.

    Rob
    Last edited by rob; 04-03-2011 at 06:05 PM.

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    i have a few medical issues, main 2 lupus and fibro.
    i have had to stop full time work and "retire'.
    i live on a farm, there is always things to do.

    i do them slowly, resting between jobs.
    i also believe in water aerobics.
    it is a safer way to exercise.
    i have heard about ai chi, (tai chi for water)
    but have not tried this yet.

    we can lead a "new" normal life, still full of enjoyment, just at a lower level of exhertion.

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    Rob,
    What great news! I hope that you and your Dad have a wonderful summer of racing!
    Do be careful, though. We don't want to be hearing about terrible injuries.

    I've also been feeling pretty good lately. I think that the Plaquenil and MTX have been helping. My joints aren't hurting, and I have energy lately.
    The only thing that is holding me back is the awful muscle pain in my legs. I have spasms that pull me down to the floor occasionally.
    That's what is frustrating. I feel good, and want to do so much, but the muscles won't do what I want them to.

    I had a great day today! Jeff took me to see the movie "Jane Eyre". This has been my favorite book since I was eleven years old. I thoroughly enjoyed the film.
    We then walked around downtown Monterey for a bit, and had some Greek food for lunch. Such a lovely day!
    Hugs,
    Marla

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by magistramarla View Post
    Rob,
    What great news! I hope that you and your Dad have a wonderful summer of racing!
    Do be careful, though. We don't want to be hearing about terrible injuries.
    Oh, don't worry, I am approaching this new challenge with cautious restraint. I won't even be actually racing this summer, I'll be learning to drive by starting out very slow (literally), with the top speed dialed way back, and I won't even be running a full 1/4 mile at first. I have to earn a license/certification before I can actually compete, and that will take some time. The car has all the current safety features, and I'm getting fitted up for a top of the line protective suit/helmet/restraint combo. I also have a local guy who has been racing the same type of car for about ten years now who is going to act as an instructor. I'm approaching the whole thing the same way I approached earning my pilot's license-very methodically. Safety is priority one. And, rear engine dragsters are very safe for the simple reason that the engine is behind you, and the long wheelbase makes the car want to go arrow strait down the track.

    Rob
    Last edited by rob; 04-04-2011 at 10:24 AM.

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    Quote Originally Posted by flower21clr View Post
    I have been feeling better. Today I even help my parent mend fence at the farm ( it wasn't hard my 5 &7 year olds were also helping) it was nice on the way home I Though to my self is there anyone being treated with lupus that leads a " normal" life? With proper treatment can I go back to chasing my kids, helping bale hay, gardening??? Being active in general I would love to start going back to the gym or working out but then I fear I will throw myself deeper into a flare. It doesn't make much scence to go to the gym and then to sleep all day because you can't function. So what is everyone's thoughts
    There is a lot of adjustment time while they get your meds straighten out. You will figure out during this time what things make you really ill (sent you into a flare). For me the absolute easiest thing to make me sick is being out in the sun or in stores shopping without protection. At first that made me sad but now I have found ways around that and it is my new normal. I can't lie to you and say "yes things will get back exactly as they were before" because I don't know that for sure. I also don't know that it won't happen. Some people get to a place of very mild lupus and a few may go into completely remission. For the most part we just learn what sets our immune system off and we work around that.

    I can promise you that no matter what it looks like now emotionally and mentally it gets better. From what I have experienced and what I have seen/heard from others, I believe that many of us actually go through the 5 stages of grief when we figure out that we are sick. I think we mourn the life we once knew just as we would morn the death of a person.

    1. Denial and Isolation- When I first had to face how sick I was I was in complete denial. I knew that they would get this all worked out and I would be right back like I was but BETTER! I also stayed away from people because _________________________ (fill in the blank here. for me it was because I put on so much weight from the meds and it was too much trouble to get prepared for the sun)

    2. Anger- I went through a phase of being really pissed because I was/am sick. I do my best to be a good person. A moral person! I don't lie, cheat, steal. I am honest and I take care of my daughter. I have done everything right and look where it got me! My friend ___________ is out cheating the government and cheating on his wife but I am the one to get sick! (Anger was easier to deal with then accepting the truth)

    3. Bargaining- Some people bargan with God or their Heigher power during this time. "OK, If you just let me get well and beyond this I will_______________________". It can also be used as a type of remorse. "If only I had done (XYZ) sooner then maybe I wouldn't have become this ill.

    4. Depression
    - This one is often the hardest to get beyond. "My life will never be the same. I will never be able to do _____________ so why even try. Nobody in my family understands why I can't go do _______________________ so I am letting them down again. This one is almost a "giving up" because we see no future. One thing that is very important is to remember that, even though Depression can be be part of grieve, it can also be part of our disease. Lupus and other autoimmune diseases tend to have a mental aspect so it is VERY important to go to a doctor and get help with this (either meds or advice for other ways to relase the depression)

    5. Acceptance. - This is the place where we hope to get. Some people take longer than others and some really don't get here at all. Acceptance is where we understand that we are sick but we also understand that it doesn't mean that our life is over. We find a new way to live and find new things that bring us joy. We come out of the darkness of our disease and see that there is light at the end of the tunnel. Now we begin searching for things that we can do to enhance our life because for the first time we can see that our life isn't over it is simply different.
    Last edited by tgal; 04-04-2011 at 07:15 PM.
    Mari

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    ~Winston Churchill~







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    Bump because I think the stages comment is needed tonight
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Quote Originally Posted by flower21clr View Post
    I have been feeling better. Today I even help my parent mend fence at the farm ( it wasn't hard my 5 &7 year olds were also helping) it was nice on the way home I Though to my self is there anyone being treated with lupus that leads a " normal" life? With proper treatment can I go back to chasing my kids, helping bale hay, gardening??? Being active in general I would love to start going back to the gym or working out but then I fear I will throw myself deeper into a flare. It doesn't make much scence to go to the gym and then to sleep all day because you can't function. So what is everyone's thoughts
    Hi Flower,

    I bet that did make you feel better helping your parent's with the fence and how you feel otherwise about working again and the gym, i've missed my work for years and chatting and mixing with people it makes you feel so great mentally but all that's been at a stand still for years just coping with ailments i've been diagnosed as been enough for me mentally and now with the Lupus, it's like another heavy load dropped on me but i do miss all my activity i used to do like yourself.

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    Thanks Mari I read your post and you are very right I do see my self going through those stages. I'm really glad it gets better. I am starting to feel better. I just want to be able to play with my girls and have the energy to do my fathers office work. I really want to garden and help with hay but the sun and I seem to be not getting along hopefully with 100spf and sun hats we will see how the spring goes.

    Terri I going to start walking when the weather breaks here in pa ( above 40 in the morning) and looking into swimming laps in the evening at our local pool. Hope it will help me shed the baby weight. The going back to work other than for my father seem out of the question I'm considering doing a home base home decor party business you work it when you want so when I feel good I can book party's and when don't I can rest. It will get me out of the house and I can talk to grown ups. So things are looking up
    Thanks every one for the support
    Christine

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    careful doing laps in the pool. it is easy to over exhert yourself.
    hydro therapy. (water based exercises) is good.
    as is ai chi (water based tai chi)

    when swimming, you do not feel the exhaustion as easy as land based exercise. just be careful.

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