I haven’t been writing because my physical health has hit an all time low. My mental health has also hit a low. Someone mentioned to me a number of weeks ago (only the 50th person to mention it) that I needed Dr. House to fix me. Dr. House is a fictional Doctor on a TV show. So, I watched 8 seasons of house. I wrote down all of the differentials and diagnosis of different patients. Sadly, I was able to diagnose most of them in the first part of the show. That is what happens when you’ve been sick most of your life and seen hundreds of real life Dr Houses. Some of the diagnosis on the show…
Heavy metal toxicity
Environmental toxin poisoning
Coxackie b virus
Epstein bar virus
And guess what…I have been tested or treated for ever single one of them. I’d copy and paste my labs but I have no space for media to do that but I have the labs that show qfever and all of the others. The point is I HAVE had Dr. House in real life. A ton of them.
I am my own advocate. I study diseases, advocate for myself, and then apply to be in case studies and genetic testing.
I was diagnosed with a muscle disease by muscle biopsy 11 or 12 years ago now. But the muscle disease lacked the genetic mutation component. I found a specialist ON MY OWN in England who has been studying my case since. I have been in a case study in Canada. I have been in a case study at the National Institute of Health. These are the top Doctors in the world and so again, I have SEEN the real LIFE Dr. House times 50 and I am still somewhat of a mystery.
Currently I am being studied in the US as part of a genetic case. He took on my case because of the England doctor’s referral. Everyone around the world has seen copies of my muscle biopsy tissue. Photos of my atrophied leg and shoulder. My case has been presented in Germany and multiple other countries. So far, the journey continues to find an answer. They know I have a muscle disease they just don’t know what is causing it.
They also know I have a bone disease diagnosed around the same time with no idea what is causing it.
I also had a past case of rocky mountain spotted fever and Lyme disease. I had no idea that a person could become reinfected. I just went to the doctor today after being bit by a tick 6 weeks ago. After 2 rounds of antibiotics, one trip to the ER, I am still very much not ok. I tried all of the herbal/holistic/natural approach and I have become sicker. So now come the big guns for daily antibiotic injections since this infection is affecting my heart rate and neurological system. It is deeply deeply upsetting.
I knew I was depressed when I stopped writing. I really knew I was depressed when I didn’t immediately renew my blog for more space to post my photography. I really knew I was depressed when I photographed a once in a lifetime wild horse and felt almost nothing after. I thought maybe it was my anti seizure medicine making me depressed. I thought that maybe it was too many triggers in the last month flaring up my PTSD and anxiety to an all time high. But when I told my doctor today that I truly wish I were dead she took me seriously. The infection is affecting my brain. We have to do the muscular injections of antibiotics. Can my muscles that are atrophied handle 30 injections? I have no idea!
I will tell you that I went to church on my way home and for the first time ever prayed for myself. I always pray there for others but today I prayed for myself. I pray in the garden outside, not in the church.
I’ve had many reasons to wish I were dead. Abuse, PTSD, illness, more abuse…but not until now do I wish I went to sleep and didn’t wake up. Usually a sunset would fix that or a bird or my daughter or husband. Now that this infection from the tick has affected me, I am more sensitive to chemicals, smells, everything is triggering. Everything is overwhelming. Everything makes me sad and despondent.
I just wanted to share my struggle. With someone. Anyone. My blog is about abuse and PTSD but that is really only part of my story. I have a number of rare diseases and I am tired of being my own advocate. I pray this man studying my DNA right now finds the answers because I am just tired. The PTSD triggers push me over the edge. I’m watching my body waste away and so aware the my mind is not far behind. I think I am just hoping for hope. For prayers.
I’m not writing this for suggestions. As you’ve read I’ve been seeing doctors at the highest specialist level I can see all over the world. I’ve tried it all. Even if I don’t get an answer, I hope for spontaneous relief of just one of my symptoms. I need someone to have hope for me because I am about all out. Not a good place to be. So if anyone wants to pass me some hope I will gladly accept!
That little bird that I posted for Linda’s contest…I went out in horrible pain, crying pain, terrible anxiety, terrible panic attack, and I found that bird! And I listened to her song. And she gave me a moment that made me think everything might be ok. That’s why I posted her for Linda’s contest. She was important to me. Giving me hope when I had none. Even for a second. I just need that back again.
Thanks for listening.