Word Vomit, Chemo, Deathaversaries

There is so much to say!!! I should write more often. Then I wouldn't overwhelm the people around me. I really don't care if no one reads my blog but it were to help someone I would love that. Let's see if I can organize what is on my mind....

I have been waking up every day with severe anxiety. I have had a headache since I started chemo. Is chemo causing all of this or is it because October 17th is not far away. Tomorrow is the anniversary of the day we found out that Marcus had Burkitt's Lymphoma. But it was a Friday and today is Friday so it feels like today is that day.

Today I am trying to focus on something happier. I married the love of my life on March 13, 1992. I'll just copy my facebook post so I don't have to say it again....
Today is my 25 year 7 month anniversary of being married to Antar. And it's Friday, October 13th. Antar and I were married on Friday, March 13th. We have told each other happy anniversary on the 13th of every month since then. When it lands on a Friday it is even more special. I had wanted to have a big party this year but it seems like my days of big parties are over. But, you know, there is no one I have ever met that I would rather be sick with. That may sound weird but it is true and if you have ever been sick you know that is quite the compliment. I read comments from people that have the conditions that I have and a lot of them don't have the support that I have. Antar loves me. I mean truly loves me. He has proven it. Regardless of my religious belief. He has loved me as a devout mormon and as an atheist. He has loved me when I was thin and fit and he has loved me when I was 230 pounds. He supports me when I want to study finance and when I want to be a musician or dancer. When I told him last year that I was going to be a fitness model he said ok and listened as I bragged about my awesome trainer. He listens to me when I go on about how great my friends from work are and how much I miss them. He goes with me to the emergency room or to sit in the uncomfortable chairs while I get my IV fluids. He really is my best friend. No matter how this journey turns out I know I picked the best partner to go through it with. My new goal is to figure out Sick Dating. Is sick still a positive term or did that go out of style? I saw on a friends post that there are paved hiking trails in Utah. Maybe we'll try that. I just have to find them. So, if you have any low energy dating ideas that aren't too far from Eagle Mountain, Utah, let me know.

We watch a LOT of TV. We have DirecTV, Netflix, Hulu, Amazon Prime, and YouTube Red. We rent discs from Netflix and Redbox. So, movies don't really feel special anymore. Don't get me wrong. I still love them. This year I have developed such gratitude to all of the filmmakers, writers and actors that help all of us chronically ill people through all of this. I hate to imagine what it was like to be this sick before TV. The week after his brain surgery Antar couldn't handle watching TV and it was torture for me. When I am feeling bad I have a short attention span so I look for YouTube videos that are 10 minutes or less. I get my news from Stephen Colbert, Bill Maher and that guy that was married to Katy Perry. The Trews. What the heck is his name? Anyway, sorry curly haired british guy. I really like you but my mind is blank at the moment. It's funny. I didn't really care for him as an actor but I absolutely love him on YouTube. He speaks from my heart when he talks about the world and politics and how we need to feel empowered and love each other. And his fight with addiction. He's a good guy. So, don't ever take it personally when I can't for the life of me remember your name and I don't want to change tabs to google it.

The point is that watching TV or a movie is not special. That is for getting through day to day life. Hiking would be special. Going to the beach would be special. 

Yesterday I was trying to accept that I may not be able to go back to school even if it's online. I don't know that I can keep up with the commitment. My brain doesn't work the way it used to. That is very sad for me. 

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.

Grieving the Loss of Me

I returned to work on Monday, May 22, 2017. I didn't get well. I just decided I could do it. A lot has happened in the last few months but I'm not going to get into that right now. On Tuesday, there was a work activity where we went to the park, played games and ate. I went. I played the little that I could. It was fun. But the best thing I did was remember.

As a child my favorite day of the year at school was track and field day. I enjoyed the long jump. I loved the hurdles. I was never much for team sports but I enjoyed challenging myself. I loved climbing trees.

In middle school we did track for a few weeks and I loved it. Especially the hurdles. I have long legs and it felt good to soar over the hurdles. I still remember the feel of the track under my feet as I would run and fly.

In high school I danced. I was in a performing arts high school. I danced 4-6 hours a day. I loved modern and ballet. I loved the grand jete. That feeling again of flying through the air. I dreamt of dancing with Mikhail Baryshnikov.

In college I tried dancing again several times but something had changed. My body didn't move like it used to. It was slower and it hurt. Eventually I switched to music. But even with that I was slow, my timing was off. My ear didn't work as it should.

I never gave up on fitness. I always thought if I work a little harder eventually I will get there. As recently as December I saw my trainer and was lifting weights. He became concerned and had me sit in his office until he thought I was well enough to go home.

Now I use a walker. I never know when I will need to sit down or put my feet up. I have dysautonomia. My neurological system doesn't work the way it should. I still push myself to do as much as I can but it is a lot less than I used to do. When I left the park on Tuesday I was in pain from doing more than I could handle and dehydrated from getting too much sun.

In my mind I can still run and fly through the air.

What Is Happening To My Body????

On January 17th I was at lunch with my friend when suddenly I felt like my energy was just gone. Someone had pulled the plug. I am a type 2 diabetic so I thought it was a result of the macaroni and cheese that I had eaten. We went for a short walk. I didn't feel any better. I checked my blood sugar and it was 123 which is actually really good for me. I had recently gotten a series 2 apple watch so I decided to check my heart rate. It was 138! I thought "Ok, I just need to rest." After an hour of doing nothing, my heart rate was still elevated and I was still exhausted. My husband came to pick me up from work and took me to the Emergency Department at a local hospital. They said it was dehydration. They gave me IV fluids. My heart rate dropped to normal for me, I went home and planned to go to work in the morning.

When I woke up the next day I didn't feel better. I thought I probably just needed a day of rest. So, I stayed home and watched TV.

The next day was the same. That was unacceptable. I went to my primary doctor hoping to get a pill or something that would reduce my heart rate and give me some energy so I could return to work. She said that I could not return to work and that she wanted me to follow up with a cardiologist. I called the cardiologist that I was referred to by the hospital. They wanted me to wear a 30 day heart monitor and then follow up with a stress test and a visit to the cardiologist on February 27th. February 27th! That is a long time to be off work. My primary doctor put me on short term disability until February 17th. I hoped that would be enough time.

I got my heart monitor on January 23rd.

I ended up back in the Emergency Department on Saturday, January 28th. I was feeling really bad. They said I had Lactic Acidosis. They admitted me, took me off of my meds and gave me IV fluids and antibiotics. I had a migraine the whole time I was there but my heart rate went down so low I thought I was dying. They told me that a heart rate of 78 is actually normal. I said I wasn't normal and they disagreed. They put me back on my medications Monday morning and discharged me. I did feel better. I was still tired but better.

I saw my primary doctor the next day to talk to her about it. She still didn't have any answers but added a diabetes medication and did a bunch of blood tests.

On Wednesday the endocrinologists office the hospital had referred me to called to say they had a cancellation and asked if I would like to come in on Thursday, February 2nd.

I took the appointment and saw a nurse practitioner. After talking she took me off of Metformin and Jardiance because they can cause complications that I was already having. She kept my glyburide at 5 mg a day and asked me to check my glucose at least 3 times a day. I was so frustrated. I wanted to get better and go back to work. I was still so tired.

On Friday afternoon, February 3rd, I took my beautiful kitty, Cleo, to the vet so she could go to heaven. It was just too much for me. She was sick, I was sick. I couldn't take care of her. We were together a long time. I miss her.

While we were at the vet my doctor's office called and said that my lactic acid was still high so she wanted me to go to the Emergency Department again. We went to a different one that was closer to home. I had done some research and had learned that Metformin can cause Lactic Acidosis. 

 They gave me IV fluids and I thought that was the end of it. Maybe I would be able to go back to work on Monday. My heart rate was normal again. I was still tired but I probably just needed rest. I was so tired that night when I got home that I accidentally took my Metformin. I didn't realize it until the next morning. I was so frustrated!!! 

I rested waiting to feel better for several days with little improvement. The exhaustion improved but not enough to return to work. I submitted my first partial weeks glucose results and they told me to increase my glyburide to 5mg twice a day. 

The nurse that had discharged me from the hospital on January 30th had suggested acupuncture. I was ready to try it.  On Friday, February 10th I went in for my initial consultation and my first treatment. 

To be continued....