Where do you find support?
Who supports you in a meaningful way? What does their support look like? As you have moved along your rare disease journey, has the type of support you need changed over time? Where did you find "your people"?
Everywhere. You have to build your support system
hi Donna. Well first I joined a support group. I was surprised to find one with my ultra rare disorder. And then I started to look for healthcare professionals that have experience with my disease or at least disease is similar to mine. After that I started to hand pick my care team. Once I had a care coordinator, case manager, care, provider, etc. plus family all of this after going through a divorce and having to stop working as a nurse and dealing with empty nest is how I built my support team. I am now newly married and a very active advocate. I help others now build their support team with our support group. And that has also helped me widen my support network. 
, That's a lot to go through, while trying to deal with a rare disease. I so appreciate you laying out your process! Those are two very important pieces that a lot of people may not know are available - the care coordinator and case manager. The "hand-picked" is another important piece. They may not have worked together before, but you need to feel comfortable with your team, and that means being heard.
I appreciate all that you do, and have shared here, to help others navigate unfamiliar, and sometimes frightening, frustrating landscapes. - Warmly, Donna (Team Member)
Family and caring doctors at Cleveland Clinic
, I love that you get support from your family AND your doctors! It's nice when your medical team is invested in your health and takes the time to listen to and support you.
Best, Erin, Team Member.
Gina,
Thank-you for your consistent positive feed back despite your own issues with your pain syndrome. I really do feel like exercise is key, when we can do it. Really illness can become a burden yet also a blessing. Let your light shine as you cope with challenge! Blessings, Mike
Hi
,
Thank you, too, for your lovely message.
I agree on exercise being so very important. What frustrated me when the facet syndrome flared so badly was that I had recently returned to exercise beyond walking my dog. Had begun to swim again and even go on some 'easy rated' hikes with other older women.
The good news is that I ended up at a chiropractic/rehab center and begin rehab next week -essentially exercise instruction specific to my needs - assuming it will be core muscles work.Smiles, as I open up my light to shine a brighter after its being buoyed from our interactions here.
Thank you, and many blessings back to you.Gina Miller
Team Member
Fraya my wife is a great support to me in my battle. I also have a walking buddy named Gil, we also go to dinner with our wives together. My on-line Tai Chi, Yoga and other live live classes has folks who offer some support. A massage therapist, my Acupuncturist and Physical Therapist all provide a type of support for my challenges. The main way I control my P.S.P. Is through exercise. These are all folks who help me with that approach. I am blessed. Mike
Hi
,
Nice to see your sharing more here about what supports you have in place to help you through your challenges with P.S.P.I love the emphasis on exercise and body treatments, especially as I am moving through residual pain from a facet syndrome pain crisis from 9 days back now. I was so glad to be able to get seen at a very good chiro and rebab clinic within a few days and to have diagnostic pain block shots set up for 9 days from now. They will help my pan doc figure out which nerves need ablation (super heating).
Love your /walking buddy' plan, and regular nights out with another couple, too!!
Keep up the good self-care work!
Gina Miller,
Team Member
