Friday, September 28, 2012

My Lupus is in the active stage...

My visit (Sept.28) with Dr Jonnala, my Rheumotologist was very interesting.  First of all I was hurting bad...I had been hurting this week and was ready to get some answers. When she walked in the first thing she said is how long have you had that skin rash?  I told her I had it when I was there the last time but not as bad so I had it over a month. She ask me how I was feeling and I told her about my severe hip pain, knee pain, lack of energy and she immediately said my "Lupus was in the active stage and we need to get it under control.  So we need to get you on Benlysta.". She told me it was an intravenous drug and I would have to come in every 2 weeks for a 1 hour treatments for 6 weeks than if all was going well I would start on monthly 1 hour treatments.  This is the new medication they talked about at the Lupus Symposium. I was so glad to hear her recommend it before I had to ask her about it.  I am very concerned about it but it sounds like the only thing to get my Lupus under control.....please pray for me that this works.  It has tons of side effects but according to her I am a prime candidate for it and I will feel so much better once it gets in my system.  I guess it takes a month or so....but FIRST we have to see if my BCBS Insurance will cover it. Then the dr orders it specifically for my height, weight may take up to 2 weeks to get it set up. Thanks for your continued support in my Lupus Journey....and yes, I am back on Prednesone....

  • Deuteronomy 7:9 (NIV)
    Know therefore that the lord your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commandments.

Sunday, September 23, 2012

Lupus Symposium

I went to the Lupus Symposium  Sept. 22.  I am so glad I went.  I learn so much and was even empowered to speak to my doctor and even challenge her about being so quick to use prednesone and not using the new medication that just came out.  (Belimhmab)

I also learned Plaqunel the medication I am on that was also used to treat Agent Orange also has been used for 50 years for Lupus because there was nothing else other than prednesone and aspirin.

AND if you were diagnosed with Lupus 40 years ago you were told to go home take these meds and you might live 5 years!!!!! Wow!!!

Lupus is still a misunderstood disease and needs a lot more exposure and research to get a cure...the symptoms are so off the charts and different for every patient it is sometimes years before you are diagnosed correctly.

I believe I had it for years looking back over my symptoms before my Dr diagnosed it but I am so thankful she did and it only took 2 doctors not 4 or 5 like so many have to do.

They had  4 Drs that spoke 2 Rhemotologist , a cardiologist and a neurologist.  They each spoke for about 20 minutes on their aspects of lupus and how it effects the organs and then they gave us 1 hour to ask questions.  It was so inspiring to hear all these ladies from ages 8 yrs old to elderly have the same thoughts questions and concerns as me.  At the end there was a Patient Panel with several stories.  Very inspiring..

  • John 6:2 (NIV)
    and a great crowd of people followed him because they saw the signs he had performed by healing the sick.
  • Sunday, September 16, 2012

    Lupus is trying to control me...

    I have been off the prednisone 1 week.  Friday the 14th  started Hip pain. More like the groin area ( do women have groins?) both legs at the top.  I had allot of walking to do at a meeting downtown with my work.  Walking back to my car it was evident that the pain was back AGAIN....  Saturday started stomach ache no appetite and major diarrhea.... Today Sunday morning brought on low grade fever continued stomach issues and fuzzy head feeling.....ugh!!!

    I have decided to go to a "Living with Lupus Education Symposium"on Saturday the 22nd.  It is being done by "The Georgia Chapter of the Lupus Foundation of America" I hope to learn more about Lupus.  Would anyone like to go with me?

    I have an appointment on the 28th with my Reumotologist.  She told me if the week worth of Prednesone did not straighten me out we would talk about changing some of my medications.  I was fine after the 2nd day of Prednesone but 2 days at most after taking it back comes the joint and muscle pain......I hate this!!!!

    Life is to the point where Lupus is starting to control me and I WILL NOT DO THAT!!!!! Hoping I get answers at the symposium...

  • Luke 6:19 (NIV)
    and the people all tried to touch him, because power was coming from him and healing them all.
  • Sunday, September 2, 2012

    Where Did August Go????

    Where did August go ???

    We got a call that Ricks mom had taken a turn for the worse.  We left on August 3rd she was in so much pain. On Saturday I got out my IPad and as Rick and I sat with her I sang His Eye is on the Sparrow.  She just smiled so big.  I was so glad I was able to do that for her...after  hospice was called in and for the next 2 weeks she laid in a morphine like coma to keep her out of pain..

       We saw our 29th  anniversary come and go on August 6th. Forgot my granddaughter Hope's birthday the same day.... I Did a constant family text to keep everyone at home up to date on Donna.  She died on August 16th.  The viewing on 19th funeral on 20th.  Such a bittersweet glad she is not suffering anymore....

    Got back to work on Tuesday the 21st and was off Thursday 23rd to prepare for Jason and Roses cross country move and a long weekend visit on the 24th.  Jason's family got here on Friday.  So,excited to see his  family and spend time with the boys.  Went to a few old favorite restaurants of theirs Rocky's and Brusters and went to the pool a couple times.  Great weekend.  Sat between both kids at church and Heather led choir and Hope sang "Amazing Grace My Chains are Gone."

    Back to work Tuesday 28th and got a call Jim Mayes had died.  Great friend and as classmate at church.  Viewing Thursday with Honor Guard and funeral Friday with 21 gun salute and bagpipes.   The song they sang was "Amazing Grace My Chains are Gone."

    11 year old Caeleigh called that evening and told us she led her 10 year old sister Makenna to Jesus!!!

    A Lupus Flare started Wednesday 28th with extreme pain in my hips / upper leg joints and knees.  Thursday was horrible. I was in Kroger after work and didn't think i was going to able to walk to the front of the store....pain was sooo bad.

    That night at Jim Mayes viewing i had to sit alot....Went to rheumotologist Friday. Put me back on steroids.  I told her I felt like I was going backwards... Have had alot of knee pain.  Hard to stand up after sitting or driving. She said to take prednesone for a week and if it works fine but if I have another flair in the next month she may have to change my autoimmune medication.  That makes me nervous.  Well now it's labor day weekend which we are so thankful for.lots,of resting, naps, church, movies and just resting with my hubby.....where did August go???? it was just a whirlwind for us.....

      I had an appointment with Dr  on the 30th  and by then the pain was worse.  She started me back on Prednsone for one week.......

  • Ecclesiastes 3:5 (NIV)
    a time to scatter stones and a time to gather them, a time to embrace and a time to refrain from embracing,