Cindy (my food server) and me – Billings, MT

Now that I am vision impaired, I see the world differently. I connect with people differently. I see myself as a lot less flawed than I used to. One thing I’ve noticed lately, is the kindness of others toward me. Many people can’t tell I have an impairment (of course, some people can).
Dave and I are on the road all the time. People serve us food all the time. But, serving food is not just about serving food. Sometimes it’s more than that. Sometimes it’s about seeing a person as a person and not just a customer, It’s about seeing the person as an individual, with a family, or without one. Seeing the person with hurts and strengths and needs and wants.
For the last three days, I’ve been in Billings, MT, and have been eating in the hotel restaurant. I’ve pretty much had the same waitress for most of my meals. She has recognized me. This morning was my last meal there. She was an “old friend” by then. So, today I told her a little speech, corny as it was. “Let me tell you a little something. A few weeks ago, I became vision impaired and now I see the world differently…” and blah, blah, blah what I said above. “I want to thank you for not just serving our food and clearing our plates, but connecting with us, being friendly with us, remembering us, it’s important. It’s meaningful. We appreciate it.” (Of course, I get weepy and emotional like I do these days.)
She then explained that her family is far away. She’s educated and had a career, but she wasn’t connected to people, so she has waited tables for most of her life because she’s able to make a family with other servers and her customers. She says she never wants to do anything else. Our final goodbye was when she came back to the table and she said, “You made my day. You made a special memory for me today and I will always remember you with fondness.” So, ladies, go out and make special memories with your life. Go out with joy. Touch another person’s life. Allow them to touch yours. heart emoticon

Stress and Managing MG

As a journal note, my dose of Mestinon changed from 60 mg TID to 90 mg TID today.

Part of managing an auto-immune disease is managing one’s stress. However, stress is an inevitable part of the human condition. If you are in relationship with other people, that adds even more stress.

My daughters, people whom I love dearly, they are going through stress – LOTS of stress. They have relationship stress, work stress, financial stress, housing stress, child stress, health stress. A mother wants to fix it all. But, how can I fix it all when I am only human? How can I fix it all when I have limited finances, limited health, limited everything? How can I help when I bear their burdens and it weakens me. I love them so much. I want to bear their burdens. I so badly want their problems to go away.

Some say to turn it over to God. Some say to pray it away. Some say to have faith. Mostly, those things are trite.

However, if you dig deeper, maybe it can be done. Maybe I can do a visualization meditation/prayer today and hand those stressors over to God. Maybe, I can – in faith – release my stress, my daughters’ stress, and all of those things into the hands of a loving God, understanding that there is nothing in my humanity I can do to fix all those things anyway.

Today, I will breathe…

Thoughts under the influence of wine on a plane

Two main thoughts today, but they may be wordy…

Ever since I have been diagnosed with MG, I find myself randomly sobbing, spontaneously, in random places – usually in public. Today, it was at the gate at the airport, waiting to board the plane – in front of my fellow passengers. Great…

I’m usually the stoic “whatever” person.

Well, I have found myself emotional, and spontaneously so, and it just flies out of me, and in sobs. EMBARRASSING!!

So, this is what happened. The Southwest Airlines employee at the desk at the gate was helping me with my preboarding pass. She handed me something and I wasn’t able to grasp it the first time and I explained to her that I couldn’t see it. Then, my husband clarified that I have double vision. The employee said, “I hope the second image of me is thinner.” I said, “Both images of you are beautiful and perfect.”

She had me go around the back of her to wait to be boarded by the gate agent. That’s where I started sobbing. Dave started comforting me. He, unfortunately, is now used to this. In fact, my eyes are starting to sting with tears as I write this. When I could finally speak, I told him, “I spent so many years thinking I wasn’t good enough. I wasn’t thin enough. I wasn’t pretty enough. I didn’t realize I was beautiful and I was perfect. SHE doesn’t realize that she is beautiful and she is perfect. I wish she didn’t waste her good years wishing she were thinner. She’s beautiful and she is perfect.”

Dave said, “So are you. You are beautiful and you are perfect.” (Realize, this is something he almost never says!)

“Yes. I know. I know I am.” (Realize this is something I almost never say.) I don’t care that I have difficulty walking. I use a cane. I am vision impaired. I don’t care. I’m beautiful and I am perfect. I hope my daughters get that message. I tell them. I hope they hear it.

Second thought.

My faith has changed so much. I have left behind a lot of “crap,” a lot of dogma. (Strangely, I find a lot of my “set free” Vineyard friends are still caught up in legalism and dogma, but I digress). Anyway, I can barely relate to the things most of my Christian friends say. I think it is effing whackadoodle talk.

But, here I am, “godless” in their eyes. I now have a devastating diagnosis of MG. But, I’m not godless. I just have shed the whackadoodleness. I think it’s more important to help people than to pray about helping people. I think it’s more important to attend to the needs of your family than to attend church. (I have reasons for citing those specific examples.)

Anywho, I’m sick. No doubt about it. But, as I was meditating on God, I asked, “What happened to my faith? Is He/She still there?” I don’t know. But, there is something SO compelling about Jesus. I can’t resist Him. I can’t resist His words. I want to know Him. I want to hang out with Him. I want Him to touch me. I keep having this vision/image – if I can push the the crowd (all the busyness, all the thinking and stuff and chaos) and reach my hand through and just get a touch of the very hem of His robe – just the very thread of the hem of His robe, I will be healed. Until then, I will press through the crowd. I will press through the garbage. I will press through this illness. I will press through what the nay-sayers (whackadoodle Christians) say. I will, God willing.

Two Days of Chaos!!

Oh man! Yesterday, Dave had to take me to the hospital/clinic because I needed to get a CT scan of my thymus (to rule out a thymoma, re: myasthenia gravis) and then go see my primary care, to see about changing my blood pressure meds re: the MG. However, in the morning, I received a FB message from Dave’s cousin’s husband that there was an aid car at Dave’s parent’s house. Roger (Dave’s brother) called his parents’ house and there was no answer. So, on the way to Virginia Mason, Dave called Overlake Hospital ER, to see if they had gone there. Guessing it had been his mother, he asked if she was there. No, they said. And, then when he asked if it was his father, Leonard, they confirmed that it was. They wouldn’t put us in to the room and that the nurse needed to call us back.

I asked Dave to just drop me off at Virginia Mason and go on to Overlake and check on his dad. After my CT scan, I called Dave and found out it WAS his mother and that she had fallen. They were going to keep her overnight because, although they couldn’t detect a fracture via xray or CT scan, she was in a lot of pain and she was unable to bear weight.

Dave came and got me after my second appointment, which was interesting. My primary care provider is out on leave, so I saw an intern and her supervising doctor. They were both very somber about my diagnosis and were very caring and attentive. I cracked a few jokes, but they didn’t laugh. I’m over crying for now. I just want to move on and live my life…at least for now 🙂 It may be different tomorrow.

Dave and I informed all of his siblings. Well, this morning, we were awakened by a doctor from Overlake Hospital. They found a fracture on a MRI and were having to take Patsy (my mother-in-law) into surgery. They were unable to contact Len (my father-in-law) and they had to notify SOMEONE. So, we started making phone calls again. Throughout the day, we attempted to contact Len, but were unable. Finally, we went to the hospital and we found him there, sleeping in a waiting room. He had gotten to the hospital while she was in recovery.

Patsy is doing very well. She is alert and looks like she never had surgery. I’m just very worried about her safety. She is clearly not safe to go home with all the falls she’s been having. I hope that they will keep her or transfer her to skilled nursing until she is strong enough to not fall often – if at all – and that she’s able to go home strong.

Now, we’re home, packing for California, Florida, then home.

In the meantime, I don’t have a thymoma. Also, I found out, also, that I don’t have any autoimmune disorders. Believe me, MG is enough. I started medication four days ago and I don’t notice any difference. I was so tired last night that Dave had to help me to bed. God, please help my vision. God, please help Patsy heal. Amen.

Discovering my new life

Little did I know, in July, I would embark on a new life. Aren’t we always embarking on a new life? But, I digress.

In early July, 2015, I felt like my left eye wasn’t tracking well. Dave checked it out and said it seemed to be fine. I went to the optometrist and told her that I felt like my RIGHT eye (now) wasn’t tracking well. She thought it was astigmatism. We then left for Fairbanks, AK. While there, I started developing double vision and driving became difficult. When I returned and got my glasses, they did not resolve the issue. So, the optometrist referred me to ophthalmology. The ophthalmologist said it was my 4th cranial nerve being affected and that I likely had a brain tumor or had suffered a stroke (major freak out). The doc gave me a prism for my right lens and ordered lots of tests.

I then left for AZ, to care for Julien and Janessa, my grandchildren. It was challenging to drive, but I could do it with one eye closed. I had a blast with my family and friends. I even helped with VBS. I returned home, had an echocardiogram, carotid ultrasound, and two MRIs. The results were all clear and the doc told me I likely suffered a mini-stroke and my vision would soon resolve.

However, my vision didn’t resolve. It continued to be distorted and got worse. Double, vertical vision, with the lower image somewhat slanted. I went back to the ophthalmologist and she had me track her light. I found that I couldn’t make my eyes look to the left. She also asked me about a drooping eyelid. She said, “You have myasthenia gravis.” With tears pouring out of my eyes, she escorted me out of her office and told me to talk to her receptionist about scheduling a neurology appointment.

That was just a little over two weeks ago. SO MUCH has happened in the last two weeks – lots and lots of tears, thoughts of giving up, lots of fear, speculation about a slow and painful death, interspersed with moments of hope and laughter. When my diagnosis was 100% confirmed by my blood work, about a week later, the first thing I told my husband is that I should buy a lottery ticket (given that I got a very rare autoimmune disease). And…now both my husband and I have autoimmune diseases.

I decided to start blogging again. I don’t know if I’ll keep it up. I don’t know if anyone will read it. But, I really intend it for my family – for my children. I want to give them courage to face whatever they have to face in life. I want to leave them my words without having to go through boxes and boxes of paper. My mother left box after box of her writing. It was too overwhelming to go through – so much so that I threw much of it away. I just couldn’t go through it all. I probably missed much of her love, life, voice, and history. And, now that she’s gone, I miss her now more than ever. Now that I have a chronic disease, I want my mom more than I ever have. But, I’m also glad that she’s not here to see me sick.

Today, I’m doing well. I’m laughing. I’m smiling. More later.