Monday, February 16, 2015

Crazy anxiety.

I am going crazy.

I hate waiting for doctors to call me back. they already don't like me because I go in there telling them what I expect to find and what test I want (it makes friends fast). I am sitting going over the tests results myself and forming my own conclusions. I have read everything I could, compared MRI pictures, researched optimal hormone levels and symptoms. I am sure I am right. Just sure. But unless a doctor agrees with me, it won't matter. And I am scared that I put myself out there and I won't be right. I will have made an ass out of myself in front of a doctor who won't want to help me anymore.

But on the other hand, I have been right for the last 2 years and that is the only reason why we know that me and all the kids have EDS and fructose malabsorption. I knew. I know now. I know that we have, at the very least, intracranial hypertension. I gave all the head circumference info to Dr. Diana and she put them in her study and she said my son, and to a lesser degree my daughters, had sign of it and that to expect I would also.

Do you see the circles my mind is going in right now? I am literally driving myself mad with anxiety. At least I have energy to clean the house, nervous energy.

I just keep coming back to worrying. I can't stop looking up more things on the internet and it just makes me more sure. I have looked at hundreds of normal and partial or empty sella. I compare my current pics to my old pics. I can clearly see that my pituitary is squished. I know I am intelligent enough to learn how to read an MRI. I learned enough to be able to tell what a normal pituitary looks like, what spots are the wrong kind of spots, how to tell where the skull bone is, ans the difference between a herniated chiari and a non-herniated chiari is. I am confident that I know these things.

But what if I'm wrong? Then what is the answer? How will I keep my kids from becoming disabled? My son has already been through several things, several degenerative changes, at the exact same age that they happened to me. He could end up disabled before he has a chance to do something with his life. He will end up like me, living off of the charity of the government, poor and living paycheck to paycheck. Barely affording to live, not enough money to enjoy living. A hell of pain, torment, headaches, nausea, fatigue, and isolation. And then my daughters. It will go the same for them. I feel like I am racing the clock trying to save their lives. That doesn't help with the stress.

I am fighting for our lives, against the clock. I am fighting against doctors who just want to shove any old med down our throats so we'll quit complaining. The ones we kept were the ones who had enough compassion to actually want to help us. Some doctors hear that I have been diagnosed with mental health issues or a drug addiction and just stop right there. They just chalk me up to some crazy, attention seeking, drug seeking, drama queen. They don't want to believe that I feel as bad as I do. They don't understand the courage it takes me to fight against the anxiety and go let it all hang out in a desperate search for some relief. Some real relief. They think I want drugs. I don't need doctors for that. They are everywhere. That is not what I want. I want real physical energy. A real feeling, like I am a real human being. A human being that works out and feels their muscles get stronger instead of just hurting too bad. A human being who can play with her kids longer than 2 min without getting winded and dizzy. A genuinely happy human being who enjoys being alive just for the same of being alive. I don't want to be high, drunk, or stoned. I want to experience life, feel life, remember life, before it passes me by. Then all I will be left with is a life of nothing. Just sitting on the couch, watching TV, a drain on society. I want to volunteer, be helpful, take my kids on trips, and be all around human being. I am tired of the meds the doctors want to give me. Antidepressants that don't make me less depressed (the therapist says I am not depressed). Anti-anxiety meds that kill the anxiety, make me feel high, make me feel hungover for at least a day. A day I don't get anything done, a day spent dizzy and exhausted. Another day I can't do more than the bare minimum for my kids. A childhood wasted. A marriage wasted even. Another day I don't have the energy to connect with him. Another day I don't feel like going to his family's house or hanging out with his friends and their kids. Another day.

Around and around and around in circles. That is where my mind goes. 

Wednesday, February 11, 2015

Roller Coaster.

I feel so lost sometimes. One minute I know what is going on and the next I feel so lost and confused. I am so tired of fighting to keep it together.

Yes, I have been diagnosed with mental health disorders. I was treated for them to. Most of the treatments were ineffective and some made me worse. Actually, I had problems with every medicine I have tried except the fludrocortisone. For some reason it is the only thing that helped with the anger issues. It gave me back my compassion and patience. The therapist has told me that the only thing she sees is chronic post traumatic stress disorder. She sees no depression even though I have told her how incredibly sad and wishing for death I get when I am in my tired phase. This wasn't the first one who told me this either. She see my anxiety but says it is caused by my dysautonomia. She has experience with this as she counsels many people with physical issues that cause psych symptoms. She also has some of the same issues and her son also has EDS and dysautonomia. She supports me in my efforts to get medical help from the doctors especially after the fludrocortisone improved several symptoms. She supports me, but when some medical doctors see mental health diagnoses on my record they want to discount my experiences, even though I have proven that I have physical issues more than once. The fructose malabsorption, EDS3, and dysautonomia can all cause psych issues. Several of the doctors I have seen discount that. At least my primary doctor, my geneticist, and my therapist believe me. I am desperate to either fix this roller coaster or at least lessen it.

I am writing this out yet again in an effort to organize my thoughts about it. This way I can explain it to doctors. I feel as if my mind has developed more issues. I mispronounce words, substitute words unknowingly, and even slur words several times a day. When I get into the office, the anxiety makes the organization of my thoughts harder.

I find myself going in cycles. It feel like I have 2 cycles going at the same time. Just as the Earth spins on it's axis and around the sun at the same time. Did that come out right?

On the one hand I can feel a ebb and flow of physical energy. It goes from not being able to get up and do anything, like someone is sitting on me, like my muscles are starving for energy, to being able to do some things but less than before the infection. This cycle is the same as before the infection but the lows and highs are lower overall, physically. Caffeine has no effect on the lows. I can drink all kinds, even energy drinks and have no more ability to get up. I can feel the speediness in my brain but not in my body. I am still stuck and when i do get up to do the bare minimum of work I get tired much faster. When I am in the up, I am way more sensitive to caffeine. Just 8 oz of green tea or diet pepsi gives me anxiety feelings. I can move and get up and do stuff, I feel confident, I can get paperwork done and appts made, and I feel emotionally stable (no jealousy, distrust, or insecurity).  I still get tired real easily and I have to rest often but I can do more. Definitely not as much as I could before. I have suffered these setbacks before. Once after an ex gave me a STI, and once when I became disabled with excruciating neck pain. The first time it took me 2 years to recover. The second time it took me 5 years to recover. This time it happened after a pelvic infection. I suspect it was from my tubal removal surgery. Since the recovery from the infection I have felt like this.

On the other hand I can feel a different cycle. One I can create. If I give myself anxiety or force confrontations, I can get more energy. It feels like the other energy but it is accompanied by nausea, pounding heart, anxiety, OCD, and insecurity. I get more irritated but I can still keep control because of the fludrocortisone.

Neither of these cycles seem to be affected by my menstrual cycle. There are only 2 things that I know that is tied to that cycle. One is my libido. It actually surfaces during ovulation and a few days before I start my period. The other is a craving for chocolate and some grumpiness. That happens for a few days before I start my period.

I plan on getting an app for my phone I can track this with so I can show doctors. One that can graph these things in relation to my menstrual cycle.

These symptoms, my son's new symptoms that seem endocrinological, and my daughter's abnormal test results make me even  more determined to figure this out. I just want my kids to have a better chance at life than I did. For that I need to feel better myself and figure out the root cause of these other issues. Then my kids can receive proper treatment now before they have too much more trouble. We will all end up with the many issues my mom has. I am hoping for my children to be able to avoid most of it or at least lessen the severity so that they can become contributing members of society, unlike me.