New & blue but I'll make it through

[Ruste Jill Vallerie]

I'm new here, so if I stumble a bit, forgive me. I was just diagnosed a couple weeks ago so my head is full of many thoughts. However, for me the biggest suprise is that I just about had to die to get a diagnosis. I've been treated for severe, cronic depression for many years now but for the last 8 or 9 years the depression seemed far more resistive to treatment. Specificly, fatigue overtook me. The more tired I became, the more drastic the treatment. Frankly, in the last 2 years I have gone through 13 electric shock treatments. Nothing worked. Ever so slowly I began to listen closer to my body. Facial rash, constant mouth ulcers, debilitatiing muscle soreness (that seemed to come & go with no rhyme or reason), sleep apnea, constant skin rashes, repeated bladder & kidney infections, NO resistance at all, eneimia...I requested a referal & SUPRISE, its lupus. Certainly, I do suffer from cronic depression, but this total lack of ability to do the smallest thing, this overwhelming fatigue that overtook me was lupus. It's a blessing to at last have a proper diagnosis. I'd rather be in good health, but at least now I can take a few steps that will allow me to see small victories and there is a lot to be said for even the smallest step forward. I suffer from fairly significant, short term memory loss as a result of the shock treatments. And as you can see, I am not able to remember simple spelling, but hey, they could have given me a labotomy....

[Margaret Auchampaugh]

Hello and welcome to Ardent Celebrations. Many people like you have symptoms that go undiagnosed. I wish more doctors would make that all important referral when nothing else seems to make sense. My daughter is 25 and is going through all this now. Deep depression, severe pain ect... I do my best to help as she lives in NC and I'm here in NY. The hardest thing for me is not being able to just take off and go to her. But my disease needs constant care and evaluations. I hope now that you have a diagnoses your doctors and you can develop a close relationship to continue to watch for changes in health. It is overwhelming at times...doctors, labwork, tests....on and on. But your positive attitude is what is most important. Write me with any questions you have or if you just want to vent. We all could and should vent...*:) Take Care and God Bless. Peg

[Ruste Jill Vallerie]

Peg,
I do so appreciate your kind words of encouragement. Fortunately, I have a wonderful team of doctors and therapist who all work in the same group & meet monthly to coordinate patient care plans. It is the only program of it's kind in my state (Indiana). As for the constant tests, evaluations, etc., I am all too famialiar with the routine as I have other medical conditions that require constant care. I have been on disability since 1997 and I must say, coming to terms with the fact that I cannot & will not ever be the person I once was, was the most difficult aspect of being cronicly ill. But now I embrace the person I am today, always focusing on what I am able to do verses my limitations. I volunteer at the local prison 4 times a month, I am involved with my church and for the first time in my life I have the freedom to paint or draw anything I want instead of painting commisions for others (I was and am a professional artist).

I am sorry for your situation where your daughter is concerned. Of my three children, only one lives in my state & so I relate to your instinct to just hop on a plane and make things better. After all, that is what we, as mothers do the first 18 years of their lives. I often say that being a mother is a constant dance between joy & guilt.

I do have one question if you don't mind. My hair used to be very long and silky & really quite lovely. Now it is brittle, frizzy and impossible. Have you yourself or anyone you know experienced a simmular problem?

I look forward to communicating with you & will add you & your daughter to my prayer list.

Peace, Ruste

[Cheryl]

I know what you mean about it taking nearly dying before Lupus was diagnosed. Our healthcare system is so under-educated regarding Lupus! It is my dream to see as many commercials in TV for Lupus as there are for Viagra to educate people about it!!

It took me 9 years to get diagnosed. I was dx with RA at 27 and though I didn't embrace it and thought the doc was nuts, I continued to have worsening symptoms. I was told it was Fibromylagia, back when FM was not taken seriously and I felt I was being told "It's all in your head but we'll give it a name if it makes you feel better" Now it is finally recognized as a 'REAL pain condition'.

Over the next 9 yrs when I would go to a doctor, which I had to be suffering immensely to even go, I was handed a script for an antidepressant and sent on my way. It was very frustrating! All the antidepressants made my symptoms worse and I would go off them. Finally in 2004, I was so run down and exhausted and Anemic and had had Bronchitis every 3 months for several years in a row, my hair had almost all fallen out, I had a rash on my face, my kidneys were shutting down (stg 3 Lupus Nephritis), and I was in so much pain that an ambulance had to take me from my bed to the ER, in which the attending physician came in and asked me "Sooooooo, how long have YOOOUUU been in pain-very sarcastically. Two days later I was admitted to a different hospital (I refused to go back to that first one) and FINALLY got a doctor , who is now my primary doc, to believe that I was sick and not depressed!

In the 5 yrs since this happened, I can no longer work (I never worked a single day after going to that ER) but I have worked with my team of doctors and they've worked with me and I have 16 medications that all work to keep me out of bed and living a fairly decent life.

I won't say it was easy, because the pain was unreal at times and the other illnesses that have come with the Lupus, like Gout twice, Bursitis (3 times), a fallen arch, Glaucoma from the steroids, and a 60 lb weight gain (also from the steroids), and two heart valve prolapses (tricuspid and mitral), have been challenging in themselves. But I am still not depressed as they tried to say and I am doing fine! How you deal with this disease makes all the difference in your quality of life. Lupus isn't a death sentence like it was years ago and researchers are making great strides in finding new meds for us specific to Lupus. Also, The Lupus Foundation of America is doing great in educating the public and health care professionals on the disease and how to know if you have it and how to manage it. Their new campaign has already made a difference!

I know this was long but I wanted to tell you my story and to welcome you! If you have any questions feel free to ask! Oh, and to stop my hair from falling out, which was also dry and frizzy, my Rheum put me on Folic Acid 1mg/day and now I have a full head of hair again! Just a suggestion. :) Cheryl

[Ruste Jill Vallerie]

I appreciate that you would take the time to write such a lovely comment/welcome note. I needed a place to vent or just ramble and I beleive I've found it here.

I relate totally to your weight gain. In one year I went from 129 lbs. to 256 lbs. People see my wedding photos in my home and they ask who it is. They don't even recognize me. THAT is painful. With lupus, you seem to lose it all. Your means of employment, your income, your forms of recreation, frequent visits with family, your memory, and of course, your appearance.

Forgive me, but sometimes my anger gets the best of me. That's what I get for looking through old photos. lol

OK, that's enough of that. I have so many blessings in my life I can't even couut them all. God has been good to me.

I wish you joy and peace,
Ruste Vallerie

[Angie]

Thank you so much for sharing. This is the kind of honest and real stories I created this network for. A place for free expression of survivors in our own words. I was really touched by your frankness as well as the candid comments you inspired from fellow members. I just reposted this thread on our ACMLS fan page. I hope you will continue to write and share your experiences.

[Ruste Jill Vallerie]

Thanx 4 ur encouragement. I've been in the hospital & then had flu but pulling thru now. I will surely continue 2 write & share.

[Ruste Jill Vallerie]

BTW, thank you so much 4 posting my blog on your facebook page. Not only did it give me a much needed boost of confidence, it made me so pleased that I might b able 2 help someone else. I'm so very sorry I forgot to mention this earlier.

[Angie]

I am so glad. Keep sharing. I believe sharing even the smallest details of our lives with each other makes our fellow survivors feel less lonely.