Takayasu's Arteritis

Tomorrow afternoon I’ll be having an MRA of my aorta. This is because we think I may have Takayasu’s Arteritis. Has anyone else had an MRA or Angiogram before? What was your experience like?

#RareDisease
#TakayasusArteritis
#Vasculitis
#ConnectiveTissueDisorder
#ChronicIllness
#Diagnosis

Anyone discussed safety of the upcoming Covid vaccine with their doctor yet? Specifically, the MRNA and if it could cause an inflammatory reaction?#autoimmune #Vasculitis #TakayasusArteritis

May 1st.

Pain , pain pain. That 1 word that describes every day of my life for the past year . Pain shooting down my legs, is it my bones? Is it my joints ? Is it my muscle?..is it all of the above..who knows.. 3 months ago I started remission which means lowering prednisone from my #RareDisease Takayasu arteritis (inflammation if the main aretritis of the heart). Someone had warn me of all the side affects of this medicine.. but never knew what i got myself into..until 3 months ago..

How do u manage my pain?.. i dont. I deal with it. I dont take pain medication ..what for?. I have 3 kids i have to take care of and the last thing i need is to feel drowsy. I wake up and say to a higher power “thank you, thank you for giving me another day”

Its been 3 sleepless nights that ill wake up cause Im crying in my dream, turns out its not a dream its my actual tears of how much my back my legs hurt. Thought it was a dream for a second, but then i woke up and i had to be welcomed to reality. This is what it is to live with a rare disease. I have to listen to my body and talk to it and let it know I AM in control , the disease doesnt take over. I DO.

Having faith and waking up just saying thanks to my beautiful heart for pumping more than normal to keep me alive another day.

TAKAYASUS ARTERITIS

I am a woman a girl in an old woman's body born in 1974 from the northern part of Norway above the Arctic circle. I have one daughter one husband and one cat. On disability due to several diseases that make my days an everlasting fight to endure pain and keep going. My main diagnosis are Fibromyalgia Migraines Plantar Fasciitis and Takayasu's Arteritis. For the Vasculitis ( TAK I have to take a lot of medications and some more to counteract the side-effects of them. In addition to the pain meds. I am a chronic posimist ( positive and optimist too and can't help it. That means that I can't say anything negative without finding something positive to add to it. It happened over a short time during a tough period in my twenties and now it is stuck. I think that is what has gotten me through the last ten years with TAK. My perspective on life nature values and people have altered but I still struggle to balance the will and the able. Most days I use up all my energy and overdo the physical bit. And then I regret it or just awaits the pain and the fatigue that follows. Because of the meds and the lack of exercise my body has gotten overweight. In my head I still remember the thin fit and effective me but every time I see a mirror tries to move or put on clothes I am slapped in the face. I know why and it is not because I am lazy so that is why I hold on and keep telling myself to be patient. My story ( life journey is filled with many obstacles but I am happy most of the time and thankful all of the time. As I said about ten years ago after almost two years very ill and finally a diagnosis whenever someone asked me how I was doing. I said I am here I am alive and I now know that I have a chance to see my daughter grow up. Nothing else matters : D #Fibromyalgia  #Migraine  #TakayasusArteritis #plantarfasciitis