Fighting Lupus: My personal story

Fighting Lupus: My personal story

Every Tuesday Mama shares a personal story.
This week’s story was written by an Anonymous person
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I’m a 38 year old single mom with a 17 year old son. I was diagnosed with Lupus 15 years ago and have had it come and go in and out of remission.

About six years ago it came out with a vengeance. We have tried every known medication, treatment, chemo all to no avail. Now my only hope is that a stem cell transplant will work, or that God will come and heal me. I don’t feel that my work here is done and I have been unwilling to give up the fight. But it’s been hard.

I went from doing all kinds of volunteer work with kids every day and working two jobs for me and my son, to being pretty much sentenced to a chair. I have been unable to do much, especially in the past year. The fatigue and pain gets unbearable. I cry over stupid things and wish that this was one big nightmare. But it’s not, it’s real and it doesn’t want to let go.

It’s hard on my family, especially my mom, to see me this way and I fight for all of them. But, what I do now isn’t living, especially when I used to be so active.

I pray all the time and I don’t understand why my prayers haven’t been answered. At first I said, I’ll go through this if it means one person could be helped. I still mean this, but with each passing day it gets harder to say that.

No one in my family has Lupus and I thank God for that every day. I would gladly take the pain for any of them. I spent most of 07 and 08 in the hospital. I was Lifeflighted eight times that year and they nearly lost me twice.

There are no support groups, not that I could get out anyway’s, in my area. I happen to stumbled up on this web site. If I can say one thing is that you can’t give up. You have to find that one thing in life that means everything to you and fight for it. Someday, someway, they will find the right answers to Lupus, and I hope I’m around to see and receive them.

– Anonymous

Comments

3 Responses to “Fighting Lupus: My personal story”
  1. Haseena says:

    Hi

    I just read your story and I want to tell you there is hope. My sister was diagnosed with lupus 11yrs ago. She also went through the chemo – intravenous and oral, with disastrous effects. In 2006 we found Tahoma Clinic in Seattle and that was my sister’s answer. Please google Tahoma Clinic and contact them – have a consultation. My sister’s doctor uses well-researched alternative treatments without the side-effects of conventional medicine. He himself has pioneered treatments and written papers. The medical director of the clinic has written many books about nutrition and he is well-known for pioneering bio-identical hormone replacement therapy. This clinic is amazing and our prayers have definitely been answered. My sister is healing fantastically. Read her story on my website above – this website will be redirected soon, so do this as soon as possible. Please call Tahoma Clinic – if you’re in another area of the U.S. perhaps they could refer you to someone, but really, if possible go and have a consultation. If you need to ask me anything else, please feel free to email me. There definitely is an answer for you!

    Haseena

  2. Bunk says:

    Hi hun,
    I just read your story and although I have no idea what you could be going through, I have gone through very bad times. I can understand when you start wondering why he hasn’t answered yet but sweetie, I have learned through my hard and down times that he will answer on his time.
    He does have a plan for us, blind faith…and you are doing awesome! The way you talk, the strength of your fight is showing through strongly, maybe he’s using you to help others, I don’t know but i do know he has great plans for you!
    Keep strong and when you’re tired it’s okay to lean on him and rest knowing he will take care of you!
    He loves you 😉 as do I!
    Keep the faith sweetie!
    Your sister in Christ
    bunk

  3. Annamarie says:

    All 3 of you have the correct answer. Christ saves us everyday. Even through the pain.

    I suffer from Lupus as well. It is attacking me w/a fury I only pray God sends his warrior angels to protect me from. At 41 I feel like life is almost over for me w/this disease.

    I was told I would be wheelchair bound in 5 yrs and in pain like bone cancer patients feel if I am not able to take medicine for it.

    I have a bad heart and been diagnosed w/RA as well on top of the Lupus.

    I am not giving up either. But it is hard sometimes to get out of bed and make anything work and not want to scream in pain.

    I will call Tahoma Clinic and research it as well. Thank you for that advice Haseena.

    I have heard of Fungton that is supposed to be helpful. Its a natural medicine. Organic. But I havent tried it yet. I am still researching and finding out about what works for people and start putting together a list of things and submitting it to the Lupus Foundation. Maybe one of us that suffer can bring to light some medicines that wont be more harmful than the disease….

    God’s speed to all of us on our healing!

    AM