Truth as I see it

Porphyria is a rare disease caused by a buildup of red blood cells and or porphyrins. All of this news because of blisters on my fingers and toes? It isn't possible is it that I could have another rare disease? Is it? Turns out I have Pseudo porphyria which is so much better than the actual disease. I am somewhat relieved. All I know is that the anti-inflammatory I depend on for pain control may be causing the blistering on my body. I have had to stop taking the medication. I now have severe joint pain. Fast forward 4 weeks I am referred to a Rheumatologist. A very nice Asian doctor with a thick accent. She examines me, looks at my x-rays and asks me a lot of questions. She told me if I didn't have CMT I would be in more pain! First time it has ever been an advantage. She also told me "you very strong lady. Why you no take pain medication?" I felt something in my head explode. 2 and a half years ago when I was in excruciating pain the doctors would only give me 1...

I sent this letter to 10 people in my life and one of them told me it inspired her to talk to her family about her pain. I am putting it on the blog hoping it may help someone in some way. Blessings This is an open letter to the people in my life that mean the most to me. I am sharing information with you so that our relationship can grow. I am going to be real and make myself vulnerable because our relationship is important to me. I have many ailments but the hardest thing I have to deal with is chronic pain. I want to explain to you for the sole purpose of understanding what I go through. Dealing with chronic pain is all about energy, the more pain I am in, the more energy my body sucks up to deal with it. Pain is like an energy vacuum. So when I am dealing with a lot of pain, I am left feeling as exhausted as if I ran a marathon that day, the day before and every day. When I am short or blunt with you it is because of this. I do not intend to sound callous or ...

Well it happened- I finally lost it in front of my poor husband, the doctors and nurses at the clinic. No one was hearing me. I can't take much more indecision or repetitive action only to end up back at the same place. I can't be the "good girl" the "strong girl. No one listens to her! Yep a full blown melt down just a few days after reassuring my psych doc I am doing fine- well not actually fine I told her but "I have hope things will improve".  That's what I have lost, my hope. My neighbor was just told she has 3-4 months and I am angry. Why can't it be me I am asking God? I am ready to be out of here. Sure there have been blessings and precious moments in the last six months but there has also been so much pain and disappointment. I am tired of missing things , of breaking plans, of watching my life from my window like a fish in a bowl. I can't walk on the beach. I can't go see a movie, two simple quiet things I ...

 I pour myself out on this blog and talk about my journey and I do not want to duplicate my posts so let me just say I am continuing to try and improve my health and am serious about my weight loss. I am in a weight transitions class and am using an app on my phone that makes keeping track of what I eat super easy. I am using alternative forms of medication for my pain and it is helping so much. I am using my scooter much more if I can or my walker when I can't.  I was able to visit one of the places where I have been the happiest and carefree and it was like a big warm hug. Reconnecting with a sweet friend was so much fun. You can go back and feel the love again. Missing people I love comes daily but I am choosing to focus on the amazing things they are doing with their lives.  My love is strong enough to span any distance. My prayers are continuous. Lord, there were so many blessings last year and I am truly grateful for each one. On September 25th I was pr...

Don't let anyone steal your joy! MELE KALIKIMAKA!  MERRY CHRISTMAS! Been working on Christmas and my other blog because I am waiting to share my story here until after Christmas. I do not want to steal any one's joy. Joy stealer's are everywhere, invitations, family, commitments, being over budget and over booked. This is not the celebration of Christs birth. It is Commercial Christmas. Christ's birth should be a  special time of year not one to busy yourself out of the joy. The enemy comes to steal your joy and busyness is one method he uses, don't let him. Pick and choose what you want to experience and know that the people who truly love and support you will understand if your focus changes. It's about the birth of our savior and it is really His birthday party, don't spoil it. I love everything about this holiday and try to absorb as much of it as I can. I stay away from things that might trigger me and I use all of my coping...

Truth as I see it: Sometimes it's hard to be thankful : As I look at this time of thanksgiving I can't help but feel less than who I want to be for a moment, but with a progressive disease I ...