Friday, June 3, 2016

Some people seem to be clueless....

I am at a loss when people ask me questions, and then make wild assumptions...
about me...what I do...my health...etc.

I apparently seek attention and I am trying to fill something missing in my life by posting on FB or writing my blog.  I have had someone tell me I focus too much on my so-called "LUPUS" and if I just "lived", then I would be fine.


WARNING

...RIIIIIGHT...because I haven't tried that...


The Picard Facepalm...because no other will do!



I don't complain 24/7.  It serves no freaking purpose to complain.   It truly doesn't.  I am the "find the positive in any situation kind of person".  

Here is the truth about my world...


...about the pain...pain that keeps adjusting my "normal range" because I have become used to the that level of pain.  PAIN that will cause me to puke because it is so intense.

...nausea...as if I thought food or liquids wanted to stay in my stomach.  I love running to the bathroom 4 to 6 times a day...EVERY DAY...to empty my stomach. 

...fatigue....THE BONE CRUSHING FATIGUE.  Fatigue so heavy it feels at times as if it will suffocate me because I don't have the energy to breathe let alone try to move and be productive.

...the bleary brain fog...I am a highly intelligent person and this fog makes me feel like I am slowly becoming incompetent.  That all of the knowledge I have accumulated in my life time is draining through a sieve.

...joint swelling & stiffness...I love dropping things because my hands won't close all of the way from swelling and stiffness.  Or how my knees and elbows won't bend enough to allow me to walk stairs or how I can't write with a pen for more than 3 minutes before my hand stops working.

...headaches...These never stop.  It is a migraine every day...and this goes back to becoming accustomed to that level of pain.

...rashes...I love glowing magenta or being covered in hives or having blisters show up on my legs, chest and arms for no reason. Or have someone look at me in horror and say...ARE YOU CONTAGIOUS?!?!  NO wait...when the blood vessels are inflamed with vasculitis and I get LESIONS from it.  Yeah...those are the BEST...not. (sigh)

(why yes, I do tell all of that to one person...THE DOCTOR, because he is the only one who truly needs to know that stuff. :P )

I just don't feel the need to complain.  I am blessed beyond measure and have much for which to be thankful.

Don't get me wrong.  This person (and everyone else who has said similar stuff to me...and I bet you) means well and truly thinks they are having an epiphany telling us this.  They don't get we hear it all of the time.  

...EAT ME....DRINK ME...

...and you will be CURED!!!!

Let me clue you all in.  There is no cure...not yet.  Research is working diligently to find a cure and the best course of treatments while working towards that cure.  Diet, exercise and following the treatment plan our doctors give us are the best way we as patients can give ourselves the best chance to do well and have periods of remission for our disease...be it Lupus, RA, MS, Ankylosing Spondylitis...etc.  

I know people want to help us because they feel helpless in a way to know what is best to say.  We aren't asking you to say anything.  We want you to be our friends, family, etc.  To listen to us if we need to "vent".  Offer a should for us to cry on as we deal with whatever it is.  This lends into a grieving moment for the permanent loss of something from our lives.  We have had to give much to adjust so that we don't put ourselves into the hospital or cause a life threatening flare.

Ask us what we need...if it is something you can do, I am sure many would be thankful for the offer and the assistance.  Sometimes it's just having someone there who listens and is a presence.  <3 br="" nbsp="">
I will reiterate...I am blessed beyond measure.

The sun came up today.  I love an amazing, wonderful man.  I have two beautiful kids.  Three equally beautiful grand kids.  A job I love.  My fur baby, Dallas.  Amazing friends and family.  A roof over my head, food to eat, and a vehicle to get where I need to go.

Does anyone really need more than that?

I dare say...NOPE!!

Wednesday, June 1, 2016

Neurology appointment update...

update...

Neurologist appointment set up for next week on the 9th.  Feeling optimistic about seeing this new rheumatologist.  Terrified otherwise.  Not looking forward to the tests and time lost having to do them.  The spinal tap is the one I am dreading the most.  

My last one I missed a week of work dealing with it...and it was a fluoroscope guided one.  I still needed the blood patch to stop the leaking.  I am not sure how many MRIs will be needed...head, neck, spine...but possibly hands, feet and pelvis.

It's been a long time since I had an evoked potential test.  It measures the time it takes the nerves to respond to stimulation.  Per WebMD, there are three types of evoked potentials that are typically tested for:  


  • Visual evoked response or potential (VER or VEP), which is when the eyes are stimulated by looking at a test pattern.
  • Auditory brain stem evoked response or potential (ABER or ABEP), which is when hearing is stimulated by listening to a test tone.
  • Somatosensory evoked response or potential (SSER or SSEP), which is when the nerves of the arms and legs are stimulated by an electrical pulse.

On a lupus note...in a press release today, the Alliance for Lupus Research (ALR), the Lupus and Allied Diseases Association (LADA), Lupus Foundation of America (LFA), and the Lupus Research Institute (LRI) announce that a Lupus Patient-Focused Drug Development Meeting - Lupus: Patient Voices - will be held in spring 2017.  

Tuesday, May 31, 2016

checking in....

It has been a very long time since I posted.  Life has gotten in the way like it can do.  So many changes since I posted last.

I am waiting to get in to a new neurologist.  Having lots of neurological issues and the dreaded "MS" is being considered yet again.  I seem to go through this testing about every 5 to 6 years.  This time around there are more pronounced issues.



R-A-N-D-O-M
...facial numbness 
...heel numbness
...toe and fingertip numbness
...balance issues
...speech issues
...swallowing issues


I know the drill.  Nerve conduction studies, EMGs, visual evoked potential, spinal tap.  Maybe some new tests since the last time...looking forward to new doctor. He is the son of my rheumatologist. 

Lupus isn't known to cause these issues except in very, very rare cases and usually with advanced, aggressive disease.  I am also waiting for Anthem to approve Rituxan as my new treatment since the CellCept is not working like it did.  I have gone up to 3000mg a day and the side effects are just not tolerable anymore on top of the continued disease activity.  Hoping the Rituxan will allow me to get off the damn steroids.  My brain can't keep taking the hit and how it affects the psychosis issues.  Hoping it will also allow me to be weaned off the antipsychotic meds too.  

My kids say I have a freaking pharmacy in my medicine "bag".  They are right it seems like.  I haven't listed my meds ever....so yeah...it's kind of scary to look at.


  1. Cellcept 3000mg/day
  2. Prednisone 40mg/day
  3. Synthroid 200mcg/day
  4. Cytomel 50mcg/day
  5. Januvia 25mg/day
  6. Vitamin D3 15,000IU/day (100,000IU/week)
  7. Torsemide 40mg/day
  8. Estadiol 1mg/day
  9. Seroquel XR 150mg/day
  10. Seroquel 25-50mg/PRN  
  11. Gabapentin 900mg/day
  12. Diflucan 150mg PRN  
  13. Ventolin 2-4puffs every 4 hours PRN
  14. Advair 2 puffs daily
  15. Epipen PRN
  16. Prolia injection every 6 months
  17. Nexium 40mg/day
  18. Zofran 4mg PRN
  19. Flonase 2 sprays twice daily
  20. Restasis 2 drops per eye twice daily
  21. Claritin 40mg/day
  22. Benadryl 100 to 150mg PRN
  23. Astelin 2 sprays twice daily
  24. B Complex vitamin
  25. Multivitamin