can I become an ostrich?

I haven't written for a long time. I wish I could say it was because I was feeling so good that I was out doing something, but alas, that is not the case. Although, I have been busy and have much to write about. I have no idea where this writing will take me, but I just need to get some things out of me, so you get to read what I need to dump.....lucky you!

I guess the place to start is that I finally got a diagnosis. After I can't even count how many years of knowing something was wrong with me, I now know. As many of you know, I have been diagnosed with Fibromyalgia, and before that, Chronic Fatigue. However, neither of these illnesses seemed to explain everything. So, I did lots of searching and came up with a possible diagnosis of a rare illness called Dercum's Disease or Adiposis Dolorosa. When I read about it on the net, it just seemed to fit like a glove. So, I discovered that there was a doctor in San Diego who was the leading expert in this disease. I guess the universe was in agreement with me, as I had a number of miracles that led me to her office in San Diego. I would never have been able to afford this trip, but as I have written on Face Book, and maybe here....3 angels came to me, and financed this trip. I have thanked them profusely, but here it goes again: You are my angels, my friends, and I only hope that I can pay forward someday the kindness and generosity that you bestowed upon me. This kind of generosity is really rare in today's world, but all of you stepped up and made my trip possible....not enough words to explain how I feel, and the deep deep gratitude I have for all of you. Bless you all!!!!!

So, my trip to San Diego to see Dr Herbst revealed that I have Dercum's Disease type II, and lipa-lymphadema. Both of these have no cure, and are progressive, however there are ways to slow down the progression. Diet, meds, suppliments and treatments are in my future. When I returned and told my primary care doc, he shook my hand and told me "well done" for sticking with it and coming up with a diagnosis he had never heard of. As one of my angels, Bev says...."mirror mirror on the wall, we are the rarest of them all"!!!

It does feel good to finally have an explanation for all this pain, fatigue, weakness and a host of other conditions that go along with this illness. However, it is also a diagnosis that is not easy to hear, as while it explains the symptoms, it still doesn't cure me. Dr Herbst has spent many years researching fat disorders but because it is so rare, she does not have much money funding her research. I would like to say now, that anyone reading this.....when my birthday comes up in August, I will be asking for donations to Dr Herbst and the organization FDRS (Fat Disorders Research Society), so if you want to donate to them at any time, that would be great! I want a cure!!!! Hopefully, on my birthday, I will be asking for donations, so please...save your pennies as I would love to donate quite a bit to her to help her further the research. She is an amazing Dr. She has dedicated herself to this subject. And, she is very nice and appears to go the extra mile for her patients. I feel so lucky to have her as one of my medical team.

Ok, so I am now diagnosed, and one of the things that I am supposed to do is reduce stress in my life. Well, that is not going to be the case for a while. My mother has been diagnosed with probable lung cancer in both lungs, and she is currently in the hospital with what they are calling "failure to thrive". (I say probable as she does not want any further tests, but the doctor said it looks like lung cancer on the cat scan.....and the diagnosis of failure to thrive is basically because she has given up taking care of herself. She was very dehydrated. I am hoping that now she is in the hospital she will get a team of medical/social workers around her that will help her) She does not want me to tell anyone about this, but sorry Mom, I need support too. I don't know what to do. OF course I want to be with her (she is in Montana), but to do that, I would have to pack up my house, to either rent or sell it. I don't have the energy for this. Along with that, I could bring my shih tzu out there, but not my beloved dingo. I would have to put her down. Hard decision. I know some of you out there would probably not think it to be a decision, but my dog has given me 15 years of unconditional love. My mother and I just started getting along about 3 years ago, and even though I would like to say that was unconditional, it isn't. I know, I am a horrible person for writing this, and I probably should just keep this to myself....but I am tired of pretending everything is ok. I won't go into the details here, but lets just leave it at my childhood and youth were not all that happy. I was very good at pretending, so if any members of my family are reading this....sorry. I have forgiven, and that is all that needs to be said.

So, what do I do? As I write this, I can feel the guilt, the anger, the sadness the emotional whirlwind building up. I am totally overwhelmed with the want to be there with her, and the reality that I am sick and do not have the energy or financial ability to go out there. I am sooooo stressed about this.

The trip to SD was very hard on me, although there was very little stress associated with this trip, just the travel took so much out of me. And then I come home, and get the call from my mother that she was just waiting for me to get home before she went in the hospital. I don't know why, but the mother that has been around, and I have been enjoying for the last 3 years....has reverted back to the mean mama of my youth. I find now I am basking in a whole lot of mama drama, and just do not know how to cope with this.

Of course, my therapist is going on vacation next week.

Well, I just realized that sitting here writing is causing me emotional and physical pain, so I will quit for now.

I wish I was an ostrich.....so, I guess I will continue to write, as that usually helps me to process and figure out what I need to do. Any suggestions are welcome....