- Mixed Connective Tissue Disease (MCTD)
- Interviews
Gabby's interview
How did all start?
summer, mid-day- weeding- very lightheaded, lightening like flashes in left eye, major balance problems with numbness in ball of foot and 3-4 th toes.
Do you already have a diagnosis? How long did it take you to get it?
no dx yet, 2 1/2 yrs symptoms $$$$ workup that unfortunately didn't include ANA and ANA titer which were finally done after hospitalization in 8/22 for 7 days.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurology, Ortho (major electric bike acc 8/21- shattered knee), Rheumatology 2 opinions 1st before ANA and titer done, Cardiology, Urology, Psych
What has been the most useful thing for you so far?
Medical and recreational marijuana
What have been your biggest difficulties?
Balance issues very bad but got somewhat better but now starting to problem again, Hands- raynauds, vasculitis under nails and very red and sensitive skin to first joint from nail, Fingers swell. Have to wear gloves to drive, going into fridge, hands throb at night in bed
How has your social and family environment reacted? Have your social or family relationships changed?
my husband and I are socially distant as a lifestyle
What things have you stopped doing?
gardening, raising chickens, hiking, hunting, bike riding, running. I have been a very active person all my life.
What do you think about the future?
concerned about if I will be able to travel again. We enjoy shooting trips all over the world but am unable even without the pandemic.
So far, which years have been the best years in your life? What have you done during them?
40 yrs. Met my soulmate, married, travelled to many countries. Bought our country home on 33 acres and enjoyed nature
What would you like to do if you didn’t have your condition?
All that I did before within reason.
If you had to describe your life in a sentence, what would it be?
Very limited with both emotional and physical problems, very tiring
Finally, what advice would you give to a person in a similar situation?
Make sure you are your own advocate, research drugs and interactions, question till you have an answer you can live with.
