Nov. 2014 This week I got an unexpected health diagnosis. It kind of knocked my socks off. It also took away my ability to make beads anymore. So I am changing my blog. I am sure I will write about beads sometimes. I have a whole studio to part with, but I have health issues that are much more important and I want to share my thoughts and challenges on this blog. I hope you will come along with me and share your words of wisdom or encouragement.
Today I received a post on my blog from a gal named Cathy Randy. It's the third reply under my Honesty post and also shown below. As I began reading I thought how nice, someone else with IPF is writing to me.....then I read more. So many incorrect facts within this little email. Number one, the drug she says she is taking as an immune suppressant isn't meant for people who have IPF. It's meant to be taken after an lung transplant, which she did not mention. It is to keep the body from rejecting the transplanted organ, not cure the disease. A transplanted lung does not have IPF. Then she says she found these people in south Africa who make these herbal medications and they have miraculously cured her. Don't you think if that was really happening that the doctors who treat this disease would know that? IPF is a deadly disease. There is no cure. Do you have the slightest clue what that really means to the person with that kind of diagnosis? It's devastating. The ONLY treatment for Idiopathic Pulmonary Fibrosis is a lung transplant. There are some prescription medications that slow the life ending process down, but there is NOTHING, as in NO THING that will stop this disease. Do NOT spread false hope to people who are desperate for a cure! I tried to find this woman's website.....surprise,surprise no access, just an address to order the herbal supplement. How evil can some people be?? I'm a retired RN and to me people who seek out those who are dying and give them false hope, in the guise of a cure, ( that costs money), are the scum of the earth. So Cathy Randy, if you are reading this, shame on you trying to take advantage of people who have only one hope, and that is a lung transplant!! Do something good in your life, become an organ donor, then you really would be doing something for those who have IPF.
Today, well actually yesterday since it's 2 am, two different friends came to see me. It was such good medicine. One of them came at my request to look at my new art and help me decide what I would charge for the pictures if I decided I wanted to sell them. We talked for well over 1 1/2 hours about our kids, our grandkids, just life in general. We've known each other for at least 30 years. Just as she was getting ready to leave one of my beadmaker friends called saying she was at Starbucks and could she bring me something and stop by....YES YES YES! We laid on my bead for over an hour while I sucked oxygen from my concentrator and looked at pictures of beads. It was probably the best medicine I have had in a long time. Thank you Ann and Fran, I love you both dearly.
I decided when I was diagnosed with pulmonary fibrosis that I wasn't going to keep my feelings to myself. When someone has a life ending disease, everything changes. ....in oh so many ways . The first year after my diagnosis was fairly normal. The only big change was that I had to start sleeping with oxygen at night. By the end of the second year though, I found myself using oxygen 24/7. That's was big. I am now hooked up to something that aids in my breathing, and I can't be without it. Doctors appointments and pulmonary re-hab appointments consume a good part of my life. I go to re-hab 3 times a week for 2 hours at a time. I never realized how much free time I had until it was gone.
Going to the grocery, the mall, out to dinner are all exhausting. It's just easier to stay home. Thank heavens for supermarkets that gather your order for you. All I have to do is unload, and that can be done at my pace. I'm good at entertaining myself, which is a blessing....maybe I'm just naturally lazy:). The thing I miss most though, if I am really honest here, are my friends. Several have been great about keeping up, but there are a few who have just disappeared. That cuts to the bone. So if you are reading this and you have a sick friend I have two words for you........be there.... In phone calls, cards, visits, whatever. Don't think about what you will say or how this makes you feel. Suck it up and BE THERE. Don't wait until they are gone to miss them. Dying is lonely, be there.