- Essential Thrombocythemia
- Interviews
Gail's interview
How did all start?
Sudden confusion, dizziness and feeling faint, tingling, burning pain in thighs.
Do you already have a diagnosis? How long did it take you to get it?
Yes. About a month of tests per internist, bone marrow biopsy first appointment with hematologist/oncologist, several weeks for results.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Hematologist/oncologist, retina surgeon, gastroenterologist, orthopedic surgeon, gynocologist, endocrinologist, ENT. Hard to narrow down – all of them have helped me to deal with some serious issues. Mostly because I’m old so life happens.
What has been the most useful thing for you so far?
Reducing stress, anti-inflammation diet, retiring so sleep pattern not as big an issue.
What have been your biggest difficulties?
Osteoarthritis-destroyed knees and eye damage from failed cataract surgery, maxular hole repair surgery, permanent central vision blind spot, chronic dry eye, two vitreous pull aways, optic nerve area damage from laser surgery to stop continuing bleeding after surgery.
How has your social and family environment reacted? Have your social or family relationships changed?
Not as actively involved due to knee pain restrictions, not as reliable, supportive nor helpful due to fluctuations in fatigue and insomnia.
What things have you stopped doing?
Travel for pleasure, walks, exercises which stress knees, kneeling, volunteer work which causes stress, overeating, eating inflammatory foods.
What do you think about the future?
Hope I make it through to the end without having a knee replacement because my hematologist/oncologist said it would be the riskiest chouce I could ever make, and hope to stay out of a wheelchair. Also hope I manage not to progress to MDS (13-1/2 years since diagnosis, so far).
So far, which years have been the best years in your life? What have you done during them?
From 2005 until retirement in 2014, which was due to getting a divorce and spending those active years on my own, courtesy of Anagrelide doing it’s job (platelets under control and anemia not yet macrocytic due to Hydroxyurea). Had a very rewarding high intensity job I thoroughly enjoyed.
What would you like to do if you didn’t have your condition?
Be more social and of service and helpful.
If you had to describe your life in a sentence, what would it be?
Life is hard, and then you die (which makes me laugh) - I have an odd sense of humor but it helps me cope.
Finally, what advice would you give to a person in a similar situation?
Find comfort and power in what you have instead of dwelling on hardships or what might have been.
