WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

Dawn

 August 1st marked the 5 year anniversary of my diagnosis.  The first three years were constant trips to the emergency room and several admissions.  I was diagnosed after months of unexplained chest pain, which ended up being fluid filling the sac around my heart.  Then was my right lung, which filled with fluid and partially collapsed.   In the beginning I had several bad flares with the inflammation and arthritic symptoms.  That usually required steroid shots.  But I haven't had arthritic symptoms in awhile, and I only had the skin rashes early on.  I was also diagnosed with vasculitis - inflammation of the veins in my legs which gave them a nice "road map" appearance. Last year I contracted MRSA which resulted in hepatitis.  (They're still not sure if it was the Lupus or the medication that caused my liver to inflame.)  And of course there is the daily battle with constant fatigue. 

But ironically, this year was kind of a turning point for me.  I really like my rheumatologist on a personal level, but I've been really disappointed in how he handles my disease.  I feel like he already has his mind made up on how I'm going to progress and he gives me no suggestions as to how to change it's course.  I sought out a second opinion several years ago, and that didn't go well at all.  So basically, I feel like I'm on my own.  

Several weeks ago a pharmaceutical rep brought me a book about healing yourself through proper nutrition and supplements.  One thing that I read leapt out at me.  It said that the herb Licorice Root has properties similar to a steroid.  I have only been on 5mg of prednisone for the past few years but can't seem to decrease it no matter how hard or how slowly I try.  Exactly one week ago I started using the licorice root everyday. I had two bad days, but have been without my steroid for five of the past seven days!  It's a very small step, but it's one step closer to getting on with my normal life.  I have to have my blood pressure taken (Licorice root can raise your bp with prolonged use, so you can't take it indefinitely.)  And of course, you should never stop taking your meds or taking any kind of supplements without your doctor knowing.  However!  For the first time I feel like I actually have some kind of control over my body and my disease.  

I have a very long way to go.  And I have my doubts that I'll ever be 100% of the person I was.  But I do believe we all have more control over our illness with our habits than we realize.  I'm really glad to have found this site and to be able to connect with people who are in the same boat.  

Good luck to everyone!  Can't wait to hear your stories!

42 months ago

Sydne

Your frustrations with doctors sounds a lot like mine...I can't even count how many doctors I've seen looking for some sort of hope. All of them told me that I would be on medication for the rest of my life and I would have to deal with Lupus. So pretty much I would only enjoy life when Lupus was in remission. So then I started going to a doctor that did alternative medicine (Dr. Habersang in Amarillo TX) and I've had a couple of downfalls since I've been going, but overall I feel better than I ever did when I was on tons of medications and in and out of the hospital constantly. A lot of people aren't open to alternative methods of healing but I've the people who aren't open to it haven't been through some of the things we have and don't understand what it's like to be told that you're going to be sick for the rest of your life.

42 months ago

Gwen

Please read my journal.  I am considering using alternative medicine.  I am still researching though.

42 months ago

Sofee

I think at some point even the doctors run out of answers.  Lupus is such a strange disease you never know day to day how your body will act.  It's like you're not in control.  I had been to the ER twice this weekend alone, and they told me I'm having a flare.  3 days ago I was feeling like  a milion bucks now it's complete 180. 

42 months ago

Sydne

Gwen, I have to be on your friend list to read your journal so as soon as you approve me I will read it.

Wow, that sounds tough Sofee. How are you feeling right now?

I hope every body has a good day!

42 months ago

Barb

My story is lupus stinks. I am so sick and have been for months and months. Today I'm vomiting and have diarrhea, everything hurts, I am severely SEVERELY fatigued, and life stinks.  Maybe in a few days I'll be better but today I'm fed up.  Anyone who thinks lupus is a minor disease is crazy.  It affects everything about my life and has taken so much from me.  I hate downer talk but this is ridiculous.  When I vomit and have diarrhea, my blood sugar gets low and I have to deal with that too.  So I'm crazy and sick.  And I hit  my head this morning and it hurts. lol  My house is a mess, the laundry's not done, the dishes are stacked and my dog doesn't even like me today. 

How do you guys take care of your homes and personal needs? I don't even have it in me to fix a sandwich.

I try to stay positive all the time, but days like this I wish they'd put me into a drug-induced coma until this long, hounding flare is over.  I hate it. I hate lupus. I hate doctors. I hate talking about it.  I'll be better later, but right now I'm pretty fed up with the whole deal.  Does me alot of good; huh? lol

 

42 months ago

Elyse

the whole taking care of home and personal needs really struck a chord with me. I've been on bedrest with this whole heart-ready-to-explode-aka-sinus-tachycardia thing for three weeks.  To put it in perspective...gas went down 50 cents while I was on bedrest!!

My husband was great about making sure I stayed in bed and did almost nothing.  Since I didn't really leave my bedroom during this time, i didn't see what a mess the rest of the house was.  Bless his heart, but it was a nightmare.  I got up and scrubbed the entire apartment and then proceeded to have my lupus and new heart condition knock me on my butt for the next 48 hours.  How do I manage?  I've lowered my standards somewhat, and when I've had enough I clean until I could eat off of all surfaces and pass out.  Not exactly healthy, but it works. Or not.

42 months ago

Sydne

It sounds like both of you are having a terrible time, I hope that you both feel better soon, I'll be praying for you.

42 months ago

Sofee

Synde, I feel a little better now, I'm on a mini vaycay right now so hopefully the relaxation will help me bounce back.  Thanks for asking hope all's wells with u though.

42 months ago

Sydne

I'm glad you're doing better Sofee, it's good to hear.

42 months ago