I want to run

I want to run far, far away. Right now I really identify with Wolverine. Our lives are different but I see my emotions in his face. I wish I could have claws to slash and strength to break things, and then have no physical repercussions because my body would heal itself.

Tomorrow my husband is having a brain biopsy. They will drill a hole in his skull above his left ear and take out a small section of meninges (lining) and they can't help but take a small chunk of brain with it. The surgeon says it's no big deal. He will be in the hospital for 2 days and then he will have 3 weeks recovery at home. I'm worried because of his venous malformations on that side of his head. The surgeon assured me he will go around him. I don't understand how he will know where they are but I am trying to trust him.

I guess I am trusting him because I am going to take my husband to the hospital tomorrow for the surgery. My body is protesting. I have my own health issues and they are all screaming. My heart is racing, my muscles hurt. I feel like I am in flight mode. I want to run from the situation.

The reason we are doing this is to see why he has chronic, recurrent meningitis. It may be neurosarcoidosis. That could be good because it's treatable. But, part of me says it's bad because both of us having sarcoidosis is too much. I am hoping for the best. I just don't know what the best is.

I am an Individual

When my youngest child, Edna, was little, she came out of her room one day and cried, "I am an individual." We had to have a discussion to understand why that was traumatic. Once she explained it I understood perfectly.

What she meant was that she knew she was different from her siblings and everyone else that she knew. I totally relate to that. It is something that I have struggled with all of my life. As I try to be truer to myself it becomes more apparent that I am an individual. I have always longed to be like everyone else. My family has thought it strange that I wanted to be part of the LGBTQ community. I could never explain it before but now I can. I love that community because it is full of people that are not trying to fit themselves into a mold that they don't belong in. I have been doing that all of my life. I want everyone around me to be happy and comfortable. I have been willing to bend and mold myself in ways that I thought would make that happen. I am learning that I am not responsible for the happiness of others. That is a tough lesson. If I am not responsible for the happiness of my children, that means that my parents are not responsible for my happiness! (gasp) I am not sure that I like that. But in turn I am not responsible for the happiness of my parents. That is freeing. My husband has told me many times that I don't allow him to have his feelings. That is because I am uncomfortable with negative emotions. They are painful to me. But I am learning. Little by little, I am learning to be the real me. Not everyone will like the real me. But if I'm honest, not everyone liked the pretend me either. That's ok. I am allowed to change my mind, my opinions, my clothes, my beliefs... But my core person is the same. I am getting to know who that is.

Sarcoidosis

On July 26th I finally got my diagnosis. It is Chronic Sarcoidosis. I thought that was something that they made up for the TV show "House".  It's real and I have it. I have probably had it for 25-30 years. It's just really difficult to diagnose. It is called the snowflake disease because it manifests differently in each person it attacks. I have it in all of my lymph system. That is the part of your body that fights infection. So, I get sick a LOT. I think this is my 4th course of antibiotics for the staph infection in my left maxillary sinus (that's in my cheek). That sinus has Sarcoidosis. It has also affected my neurological system. I have Small Fiber Neuropathy, Dysautonomia, and Orthostatic Intolerance. Because of the Dysautonomia I get dehydrated easily, I'm usually light headed and my heart beats faster than it should. The Sarcoidosis is also in my eyes, my joints, my muscles. It is also in my lungs. I have shortness of breath and chest pain. It is in my skin. I am pretty sure that Sarcoidosis is the cause of all of my abdominal surgeries. I will ask them to biopsy the material the next time they are in there cleaning up my abdomen.

The best website I have found for learning about this disease is www.stopsarcoidosis.org. I have actually learned more there than I have from anywhere else, including my doctors.

My treatment options are very limited. Usually the first step is a steroid like Prednisone. Prednisone can cause Diabetes. I am already an uncontrolled Diabetic so that is not a great idea. Then they try immunosuppressant drugs like methotrexate. My immune system is already weak. As I mentioned I am on my 6th month of a staph infection in my sinus. So, for now we just treat symptoms and hope it disappears as mysteriously as it arrived.

Approved for Disability

I just got approved for Long Term Disability. Why am I not jumping for joy. I thought I would be so happy. The emotions involved in this process are crazy. It was humiliating that they had to request records from all of my doctors to prove my disability. I would rather go to work. I love my job. Some people think I am crazy but it is true. Maybe because I have been on disability before, I know there is no glamor in it. It is actually heart breaking. I am 46 years old. I see other people my age going on trips, hiking mountains, running marathons. My achievements are walking to the mailbox, meeting my therapist on google hangout so I don't have to go to her office, finding a medication that helps instead of making me worse. I don't want to be on disability. I was kinda hoping I would be denied so I would have to return to work. That doesn't mean I am well enough but I was hoping my righteous indignation would fuel me. I would rather have 100% of my pay instead of 70%. I'd rather get quarterly bonuses and annual raises because I'm good at my job. I'd rather think about whether I want to stay in my current role or move to something that challenges me in a different way. I would rather spend time with my colleagues planning potlucks and celebrating their birthdays. I am grateful. I have good benefits and a good support system. But I think I will cry for a while about what I have lost. The disability company will reevaluate my situation in December. Maybe I will be healthy enough that they will deny me next time. I will hope.