- V
If you are reading this I, first of all, thank you for taking the time to get to know me and my story. My name is Pamela and in march of 2014 my life changed forever. Long story short, after having a couple of months of muscle pain and shortness of breath I finally went to the hospital thinking it was probably nothing serious, but to my surprise I was admitted because I had a very bad pneumonia and after 12 days of non stop tests that included MRIs, Catscans, bloodwork, Xrays,etc and an amazing team of doctors and nurses finally they decided to do a muscle biopsy, since my muscle enzimes were sky rocket (in the 10K when they should be around the 200) ,and they gave me the diagnosis: POLYMYOSITIS WITH INTERSTITIAL LUNG DISEASE. It's a very rare cronic autoimmune disease and there's no cure for it. As a matter of fact when they diagnosed me they told me the life expectancy is around 5-10 years but that I might have a chance since I was young. Here's a link if you would like to read more about it: (http://www.medicinenet.com/polymyositis/article.htm) It has many symptoms the most common being muscle weakness and cronic pain and because of it now I need Oxygen Therapy since my lungs are very damaged (it has damaged my heart and kidney also but not as agressive as my lungs). On top of that diagnosis I have suffered from a lot of side effects from the multiple medicine I must take: weight gain (I was on very high prednisone dosage), loss of hair (from IMURAN and CYTOXAN which are quimotherapy drugs normally used to suppress my immune system so my body won't attact itself), weakness (I had to use a walker, then a cane and still use them on "bad days"), fatigue, depression, insomnia, migraines, nausea, vomiting, etc. Also I was told that I had to start working towards getting in the lung transplant list because since my illness was so advanced when they cought it so my doctors weren't so confident that the quimo drugs will work (specially since my body rejected the first 2 drugs) and also they told me that I had a very high chance of rejection and even if I got 1 or 2 new lungs that my life expectancy would be short but, thank God, we found one drug that has controled the polymyosits and we decided to put the transplant in the back burner and only have it as a last resort (I rather live 50 years using oxygen than only 10 with a new lung) but then I was diagnosed with fybromyalgia (yeah cherry on top right?) so we are working hard to control that now because I'm not responding well to treatment but I really don't want to take narcotics for pain management (I have a 6 yr old that has mild autism that needs my full attention and I can't do that on heavy pain killers) so I deal with the pain the best I can with help of my amazing therapists and try as hard as I can to keep a positive attitude because, to be honest, I fear that if I start feeling bad for myself I will dig a hole to big to get out.
With (all ) that said as you can imagine I use a machine at home to provide me with oxygen but when I go out I have to carry heavy bulky oxygen tanks and my time is limited to 3-4 hrs per tank (I have 3 but depending on the weather sometimes I can't leave them in the car so I need to carry them around) but there's a lot that goes into it filling, transporting and toting them around and honestly it limits what I can and can't do, specially with my son. So I've been looking into getting a portable oxygen concentrator. They have many of them, some more expensive than others, and yes must people have asked me why I don't get a cheap one and for me it's easy: I have to live with it for the rest of my life. It will become part of me so I would like to have something that is good quality, lightweight and that will make my life easier. This oxygen concentrator would be a blessing because it would allow me to do things and go places I haven't been since I got sick. I would be forever grateful for every penny that everyone donates. Thank you again for reading this and if you can't donate please help by sending good vibes, happy thoughts, a prayer and sharing this with others so not only would I might reach my goal but also I hope to bring awareness to this "invisible" illness. God bless, thank you and have a great day.
Pamela M.
With (all ) that said as you can imagine I use a machine at home to provide me with oxygen but when I go out I have to carry heavy bulky oxygen tanks and my time is limited to 3-4 hrs per tank (I have 3 but depending on the weather sometimes I can't leave them in the car so I need to carry them around) but there's a lot that goes into it filling, transporting and toting them around and honestly it limits what I can and can't do, specially with my son. So I've been looking into getting a portable oxygen concentrator. They have many of them, some more expensive than others, and yes must people have asked me why I don't get a cheap one and for me it's easy: I have to live with it for the rest of my life. It will become part of me so I would like to have something that is good quality, lightweight and that will make my life easier. This oxygen concentrator would be a blessing because it would allow me to do things and go places I haven't been since I got sick. I would be forever grateful for every penny that everyone donates. Thank you again for reading this and if you can't donate please help by sending good vibes, happy thoughts, a prayer and sharing this with others so not only would I might reach my goal but also I hope to bring awareness to this "invisible" illness. God bless, thank you and have a great day.
Pamela M.

