When were you diagnosed with MS and what was the first thing you did after you found out?: I had suspected I had MS for a few years so when I finally got the confirmation I took it pretty stoically... it didn't really hit me for about 2 weeks. Since I have many other severe health problems, I didn't take MS so hard - it was just a drop in the bucket. So the first thing I did after I found out, were researching and ordering books about MS - I was in TCB (Taking Care of Business) mode. When it did hit me, I had a very dark time for a few weeks, but I came out of that stronger than ever.
What advice would you give to someone just finding out they have MS?: Once you are diagnosed, it's already too late -- what I mean by that is doctors, clinics and support systems should distribute helpful literature or point patients in the direction of MS groups *before* they are diagnosed. By the time I found out for sure that I had MS, I would have been a lot more comfortable if there also wasn't a massive and unexpected deluge of phone calls, emails, paperwork, articles, Facebook groups etc etc etc unleashed at the same time. Also, be prepared that you will have to manage other people's reactions when you tell them. A few friends burst out crying, which was loving and supportive I'm sure, but was pretty annoying. It's my job to comfort you over my Dx?!?
What is something good that came out of your MS diagnosis?: I was diagnosed with three neurological diseases in the space of a few months after suffering for 12 years, so the main good thing that came from my Dx was knowledge. I was relieved to find out I had MS, frankly! Prior to that we thought I had a world-class "Mystery Disease" that would never be diagnosed let alone treated. A full 30% of my life (12 years) was thrown out the window while I suffered with mysterious pains, seizures, nausea, dizziness, vision loss, distorted sensory perception etc. It turns out the other 2 neurological diseases were combining in very weird ways with the MS that made all 3 very hard to diagnose. So getting all these Dxs has given me my life back! Now we have a treatment plan, and everything has a name to it.
What is your morning routine?: I don't let any one of my 7 major diseases rule my life, not a one of them will ever get 100% of my attention as that will inevitably adversely affect another one. So my routine is very fine-tuned... but mornings are fine. I'm a full-time freelance opera singer and model, so my schedule is my own. Puppy snuggling is part of every morning! I build lots of relaxation time into every day, so when I do work I am efficient and work quickly. I manage to keep up two international careers on 50% steam!
How has MS affected your daily life?: My main MS symptom right now is feet and leg pain/ tingling if I stand for too long, Sadly this is hard to avoid as a performer who's often on stage, so I work with the conductor/ stage manager/ choreographer to modify things for me. because I fought MS totally on my own for some many years, my daily life isn't affected much differently; but now people understand and give me some slack. That's a massive relief, let me tell you. Now I am working with other models who have chronic diseases, mainly MS, to put on a fashion show and perhaps some nation-wide advocacy.
Can you remember your saddest memory of your life?: When my beautiful, amazing angel doggy died about 2 weeks after my Dx and multiple hospitalization. It was amazingly cruel that the Universe took my baby from me during the worst time of my life.
Can you remember the happiest moment of your life?: Singing my favorite piece of music in Italy, on its 400th anniversary, standing on the grave of the composer!
Walking in paris Plus Fashion Week and signing with the #1 plus agency in the world!
Those were two of my happiest moments...
What is the greatest achievement you have done since being diagnosed and how were you able to achieve it?: There is no one achievement - partly because there is no one disease. I have had seizures on stage during an opera but kept performing. I have lost vision in the middle of performance. I am very proud of the national magazine and blog interviews I've given over the past year about MS and other chronic diseases... as a proud plus model and diversity advocate, working with the disabled community is very important to me. Push yourself as hard as you can, but know your limits, and carve out something awesome in the middle!
Any other thoughts you would like to share?: Find the treatment plan/ doctors/ medical team/ diets that work for you! One of the hardest things for me since getting Dxed is the harassment of other MS sufferers, or folks who know nothing at all about MS, who try to ram their own plans down your throat. There are some cults out there, so be careful and protect yourself. I let a few Bullies pressure me into plans there were not right for me, and the results were not good. Stand your ground! Do your research, use your intellect and your instinct, get second opinions, listen to your body. It's your health and your MS. It took me far, far longer to get Dxed than most, so I *earned* it. It's MY MS.
Do you have a website? (optional): www.suzannefatta.com
(Sent via Climb On Foundation)