You're not alone

When diagnosed with ANY disease, not just Pulmonary Hypertension, that is the biggest pill to swallow, and the hardest! How can you possibly get through this disease when you have no idea how to personally deal with it?  Family won't know what to do, how to act!  So how in the world am I going to get through this and deal with this?

SUPPORT SUPPORT SUPPORT

I can't say that I didn't know where to turn, because as many of you know, I have been dealing with this disease for many many years with other family members, but when it hit me oh boy was I a rats nest of a mess. NO LIE!   I denied it, I got mad, I got scared, I got frustrated and I had a support system behind me, my mom, then she died a little over a year after my diagnosis, then I felt totally alone.

There is a huge difference between support of a person who understands and the support from a family member looking in from the outside, just not the same.  So I did something about it, so I wouldn't feel so alone.

I looked up support groups on Facebook, got frustrated with the one's I joined and started my own with a very good PHriend, Tiffany Gunderman, may she continue to breathe easy.  I already knew about the disease, how to support others and comfort them, I just needed the interaction to help me cope better.  What I didn't need was the confrontations, and drama. So my group was created.  Anyway, back on track here.

I then joined PHAssociation and started doing emails with mentors and was put in touch with a local support group here in Pittsburgh, two actually.   One is for young adults from the age of 20-late 40's and then our regular support group for all ages.  Being around other's dealing with the same thing you are going through is a lot different than being alone and trying to do it on your own.  They understand and can show you empathy and sympathize with what you are dealing with, whereas a family member or friend can only show sympathy!  So again I say to you:

SUPPORT SUPPORT SUPPORT

And when I say support, it isn't just for patients, its for Caregivers, and children alike.  We all need support when it comes to dealing with a disease. No matter what it is.  Help your family help you but connecting them to support groups too!

Where do you find support

These links will give you the schedules on when you can meet up via telephone and talk with others

Local support groups:   https://phassociation.org/localsupportgroups/

Patient to Patient Telephone support:  https://phassociation.org/support/support-line/

Telephone support: https://phassociation.org/telephonesupport/patient-telephone-support-group/

Caregiver support:  https://phassociation.org/caregivers/support/

MyPHA support forums:  https://phassociation.org/mypha/

Young Adults support: https://phassociation.org/telephonesupport/young-adult-support/

Facebook support groups

My group that I run:  https://www.facebook.com/groups/304235876377617/  this is for Family, Friends, Patients and caregivers to learn about PH and support one another.  Age limit is 18 and older.  

All Mens group for men over the age of 18 who have PH or are caregivers but it is MEN ONLY:  https://www.facebook.com/groups/921528987974047/

All Women's group for ladies dealing with PH who are over 18 WOMEN ONLY: 

https://www.facebook.com/groups/1473142016347780/

Thanks for tuning in today. Join me tomorrow when I talk about: Dealing with sickness and PH 😊💜