Making things up.


The process of painting the deck was a long one. It was originally stained and to stain it again it would have had to be sanded. It was much less labor intensive to just paint it. It still needed to be pressure washed which took 5 hours and then we needed to wait 7 days for it to dry out before it was painted. The wood was exposed because the stain had worn away. It was not protected. Watching him paint over it was very relaxing. It took 3 hours to paint. To see the warn away and raggedy looking deck get a coat of protection was soothing somehow. It wasn’t just covering up something that was old. It was just protecting something the way it needed to be. A coat of protection. The outcome was a renewed brightness.

I feel old and worn. I want a new coat of protection.I want to feel bright again.I feel like my old deck before it got painted. Kind of chipped away at. Tired. After the grand mal seizure I have recently been told my lyme disease titers came back positive. That seizure did a number on my body. I now have to restart lyme treatment. After 2 years of treatment, the idea of going through that process again is daunting. The lyme is making me hurt all over. Every joint, bone, muscle, is hurting, which makes the muscle disease I have seem even more pronounced. That, with the realization of the depth of the PTSD that I was diagnosed with, is overwhelming. So I keep looking at the picture of the deck and thinking…one board at a time. One thought at a time, one feeling at a time, one issue at a time. I feel very exposed and vulnerable and wish that in a  3 hour period I could just be coated in protection and feel bright again. It will take much longer than that.

As a young girl I felt very vulnerable especially at night. I would sneak down the hallway. I would crawl past the back door because it had a window in it. I put a pillow on my back so that it would somehow protect me from whatever may get me from behind. Then I would crawl to my parents room. I slept wedged up under their bed as far as I could. I was always very alert even while sleeping so that as soon as they woke I could run back to my room like I was never there. I never really slept. I was always on alert now that I think of it. Even when I felt safe in their room I was always worried I would be caught there and I couldn’t explain why I needed to even be there. Everything scared me. The moss hanging off the trees that I could see outside my bedroom window, sounds the house made at night, and even the whippoorwill who was every present, scared me. I felt exposed even back then. I don’t know if the abuse had started and I cannot remember,  or the endless doctor appointments, that made me feel helpless, that started this vulnerability. I just don’t know.

I started seeing doctors when I was 8 years old. My mother was called to pick me up from school because my skin was burning, I had muscle pain, and I was seeing purple streaks. I know this because I obtained my medical records from where I was seen. My mom took me to doctor after doctor and they found nothing. The main neurologist I saw wrote a letter stating that I was making it all up. I have a copy of that letter too. My  mom never believed it. She believed there was something wrong with me. But so many people had already started touching me and I had no control over any of it. I was 8 then. I remember the doctor telling me to just jump up because he knew I could do it but was just acting like I couldn’t. Even at age 8 I was never validated. When I was diagnosed with a muscle disease at age 30, that doctor that told my mother it was all in my head was still in practice. I found him, I called him, and he called me back. I faxed him my diagnosis. I told him I was doing this so that he did not make that mistake again and if another child came in with my symptoms he needed to pursue it. He could have saved me 22 years of searching had he just done a muscle biopsy. He could have just said he did not know. But he said it was made up. That I made the entire thing up. He started a very bad theme  of being accused of making something up. After I was abused no one believed me. No one during that time in my life protected me. I started out vulnerable with the doctors and the abuse  and continued feeling exposed through my teens.

When I started having muscle symptoms again I saw 45 doctors. I have a list of all of them. Everyone from acupuncturist, holistic, homeopathic, chiropractic, to 3 neurologists, 4 rheumatologists, endocrinologists, immunologists, and so on. Many of them could not find out what was wrong with me. Many of them said it was in my own head. I was making it up. There we had it again. It came back. The theme. It was not until the Mayo clinic did a biopsy that they found I had a muscle disease. It was not until I continued to see more doctors for 10 MORE years that I was diagnosed with Lyme disease.

Why would I make something up as an 8 year old child? Why would an 8 year old child want to be bed ridden as I was to just make it all up? And if I WAS making it all up, shouldn’t they have found out why I felt it necessary to do so? And the 45 or so doctors in my 20s-40s who seemed to think I made it up. Why would I make it up? Why would I want to be in pain all the time and unable to drive, unable to do the things I love to do. Because I never made ANYTHING up!

Just because someone does not believe you does not mean they are right. It does not mean that what you are saying is not true. Being sick though I have been at the mercy of doctor’s who did not listen. Only TWO have. TWO out of 45 have listened and found answers. I am thankful for that. I found those two on my own. Those two led me to a being a part of a study in Canada, England, and the NIH.

My muscle disease is genetic. I have had it my entire life. I could have been diagnosed as a child. If I were, I never would have waterskied because it would have done damage to my muscles (which it has). Had I not waterskied I would not have been molested. Had that doctor just listened to me and tried a little bit harder when I was 8… But that did not happen. So I have spent my life trying to find answers.

We may not always know why. I have no idea what caused the fear of sleeping in my bed at age 8. I don’t know why the doctors did not believe my symptoms. I don’t know why my life set down on the path that it did. I don’t know why I was not protected by anyone along the way. I just don’t know why. We don’t always need to know why though. We need to be believed! We need to be understood! We need to be listened to! We need to be wrapped in protection by those who love us so that we are not left feeling what all those years of struggle did to me, left me…

Tired and worn like my old deck. I truly feel like my deck looked.

I have a point to this all over the place blog post! All I can do is board by board start healing. Each board my husband painted I thought of as a part of me that was getting the protection it never had. Board by board getting that protection back. And one day soon I hope to feel the brightness again. I have only found answers because I have not given up. The point of this blog is that I never gave up. I never gave up I am finding answers. It may have taken me until 44 years old to finally get them but it was sheer perseverance that got me the answers that I got. So please don’t give up. It may take 46 doctors to get your answer but you will. It took 44 years to get a PTSD diagnosis. Now it is time to heal. I have been wounded and exposed long enough. It is time to be protected and healed. I am moving closer to that and not giving up. Hopefully we can all keep fighting this together.

I know you aren’t making anything up. I believe you even if no one else has. I believe you.

2 thoughts on “Making things up.

  1. Your positive persistent attitude is really inspiring! My view of Doctors is pretty low. I can’t believe you had all that disbelief and lack of diagnostic ability to deal with! Useless they are! I was sexually assaulted by a doctor myself when I was twelve, I was phobic about them for ages afterwards and am not keen on them still. You will heal board by board- that’s a great metaphor 🙂 Lottie


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