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Frustrated! And Losing Hope! Any Advice Helps!
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megrog33 posted:
I was diagnosed with Lupus in 2002. I was a freshman in high school and at first it was difficult and annoying, but as a young person, I pushed through and persevered. I was on the soccer team, the softball team and always stayed active and overall healthy. In 2006 my Lupus was officially in remission and I could not have been happier! I graduated high school, I went to college! In October 2009 I got married to my high school sweetheart and he is amazing! In December 2010 I earned my Bachelors degree in Psychology and I was so ready to take on the world! However, in March of this year, I woke up one morning with a strange condition. My feet were so swollen I could not fit into my shoes. I thought, hmmmm...maybe arthritis? I have had arthritis this bad before. But to be sure, I went to my regular care Physician and he prescribed a diuretic because he said it looked like I was retaining water. No change! I had just been to my rhuematologist at the beginning of March and everything was fine! But to be sure, I called him. He said to come in right away. He did blood work, looked me over, and said he would call. The next few months were hell. My Lupus was back, except this time...it was attacking my kidneys. Not just to the point where it was at the beginning stages, I was at Stage IV which is just below about kidney failure. I wasn't sure what to think. The next few months consisted of doctors offices, a kidney ultrasound, kidney biopsy, treatment which was decided should be Cytoxan,4 chemotherapy treatments, nausea, vomiting, feeling better, then shingles! Stopped treatment of chemo because my WBC was soo low! Now I am on 60mg. of prednisone and transitioning over to Cellcept for long term treatment. I am swelling again and the side effects from the prednisone are horrible! I had to quit my job of 3 years to rest and take time off, but I was just wondering if anyone had any experience in any of these areas. I feel that as a 23 year old girl, I am stuck in a rut! I want to be a 23 year old and I cannot find the energy to be one anymore! Any advice or a "light at the end of the tunnel" story would be so uplifting right now because I could use some good news! This has been a horrible year! Financially, emotionally and physically. My husband is my number one fan and I could not thank him more for his support, but he also gets the force of my frustration and he does not deserve that! I need some good advice or some tips anything helps, it's better than the news I have gotten all year!
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lupylisa44 responded:
I am a prime example of the light at the end of the tunnel!!! It's late so I will tell you the story tomorrow. Basically it is exactly like yours but mine happened over 10 years ago and I am doing very well.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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Christine Miserandino responded:
HI Meg,

I have a similar story of highs and lows. I was diagnosed as a teenager and was so sick that I had to leave my dream of being a dancer and going to school at the high school of performing arts. Then in college was in a remission, carried a full course load, had boyfriends, joined a sorority and even was a homecoming queen finalist! I started my career and had a great job, but soon enough lupus reared its ugly head, I had to leave work to rest and get better. I have been on both cellcept and even cytoxin. Do whatever you need to do to get healthy. Your health is the most important thing! Of course this isn't the life that you imagined for your 24 year old self, but who knows when the next remission or "good time" will be... it can be right around the corner... but you need to be healthy enough to get there! Maybe 25 will be your best year yet! you never know.

There is light at the end of the tunnel... sometimes you just need a few lupus friends like us to hold a few flashlights until you get there!

Love and Spoons ,
Christine
 
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anowlin responded:
Let's try again. The thing that jumps out at me is that you have your highschool sweetheart, your husband as your main support and I've got to say the same for myself. There are days that I have to remind myself that not everyone is so lucky.

But I don't think there's anything I can say or do to make those gallons of fluid that are underneath your skin go away and no magic pill for your kidneys. I'll leave that up to the docs.

But the support piece. There are times when I feel like I can't or don't want to burden my husband any more, and now that he's been without a job for the better part of a year, those times are becoming more frequent. So, I have no choice but to reach out.

Is there a support group in your home town, at your church maybe? I'd imagine that your rheumie's office keeps some list of ladies who gather or an official LFA support group, or the local hospital social work department has an idea. Support group for people with chronic illnesses. Another organization that just came to mind is Meetup. They're an online organization and might have support groups in your area.

Can you talk to a counselor, priest friend? I'm nearly 3 times your age and am thinking of the things that helped me over humps throughout the years. But, keep coming back here. WebMD has some find groups and fine informational articles.
 
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lupiesuzy responded:
HI!
I was diagnosed when I was 19 and just starting to find my way. I had my life all planned out. I had been in ROTC in high school and was planning to be an officer in the Navy or Air Force once I graduated college. Needless to say, my diagnosis made me ineligible for service and derailed my plans. I made it through college while working and trying to control my symptoms, but it took 5 years and I didn't earn the GPA or the dual degree that I thought I should have been capable of.

After I graduated, I landed what I thought would be a dead end job as a secretary at a department store. Turns out I learned a lot and made some great friends. After seven years of treatment and learning to deal, I was promoted to a manager and received a hefty raise. Six months later I was promoted again with another raise. The second promotion came with a transfer 2 hours from home and now I'm on my own.

I am 31 years old and nearly in remission now.

Learn what works for you. It will likely be a combination of medication, support, and relaxation. When I flare up I use Yoga to relax and get some exercise, when I'm not in a flare I walk and lift weights and get plenty of sleep to keep from flaring. I never thought my life would be going in this direction, but it has and it's working for me. You never know what's going to come up or how it's going to work out, but that's not always bad. Things have a way of working out.


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