Standing in the Eye.

I have not written a blog post in awhile for one reason. I don’t really know what to say. There are about 6 versions of this post mushed into one, and it’s not a feel good, inspirational story of triumph or achievement.  They are words that I am terrified to write, because then it’s real and that kind of breaks my heart, I was so hoping this was just a mixed up misunderstanding and I would wake up one day and everything was back to normal. Nothing about this resembles the normal I used to know.

The thing about having a disease or three is that they all have a mind of their own, minds that are smarter than you even if you spend a lot of time trying to outsmart them. I hate waking up in the morning, not sure what parts of my body have decided they are not going to participate in the game of life that particular day but rather sit in the corner and pout banging themselves into the wall relentlessly refusing to cooperate  to let me function with any sense of normality.

Last Wednesday I woke up at 3:00am my left hand in excruciating pain, nerves felt like they were being shredded by a razor blade but also on fire and the weird sensation as if my hand were asleep. Would Ice help? Nope. Heat? God, no that just made it worse. Pain pill #1 did nothing, Pain pill #2 made me sick, and so I sat and cried with the dogs gathered round. The only good thought I had was that since I live alone no one else is subjected to this god awful nightmare. That may be one of the saddest thoughts that has ever drifted into my mind, the thought that alone is better than ever trusting someone enough to let them see this darkness. Then I thought about it and decided alone and in the dark has never felt never good in the moments I have been there in the past. So here I am over-sharing  my current reality in hopes it helps someone, including me.  None of this involves running, doing crazy fun obstacle courses with Linds or sit up challenges with Jess, for now those things are not possible, but I refuse to give up the hope that one day I can do those things again.

I have been diagnosed with:

Rheumatoid Arthritis-is a chronic auto-immune disease that causes pain, stiffness, swelling, and loss of function in the joints. It occurs when your immune system, the system that protects your body from outside harm, mistakenly starts attacking healthy tissue.

Palindromic Rheumatism involving the hands-Is a rare kind of arthritis related to Rheumatoid Arthritis which causes sudden bouts of  severe joint pain and swelling. These episodes typically occur in the hands or feet, and often reoccur without notice. When you’re not experiencing a PR episode, your joints will appear completely normal on an X-ray

Myofascial Pain Syndrome-is a chronic pain disorder. In myofascial pain syndrome, pressure on sensitive points in your muscles (trigger points) causes pain in seemingly unrelated parts of your body.

Severe Osteoarthritis of the knees- recommended full surgical knee replacements.

 

 

I have been prescribed medications out the ying yang everything from something called methotrexate which is a chemotherapy drug, and with it folic acid to try to ease the side effects, another drug at my cocktail party is plaquenil (used to treat malaria) and some cymbalta throw in for good measure among other less harsh meds. This is not a quick and dirty one night stand, these are meds I will likely be on for years, meant to halt the destruction of my joints and ease the pain. There is no drinking with methotrexate, not a glass of wine, or a small beer and god knows no bourbon. The doctor looked me in the eye and asked if I was willing to give it up, she said there were people who wouldn’t but I did without a second thought.  Before I started the medications I shared a small pour of 10 year Pappy Van Winkle with John at the Playhouse bar after my shift, and then left the rest of the bottle with him. He promised me he would not let anyone have it with diet coke!

 

I have gotten very upset, even furious, blamed myself, my weight, my genetics and then I would remember I had to meet Jen for chair yoga with Liz, Sue Ellen for lunch, Leslie for a way too early breakfast, Debi and Erica spree of the moment lobby rendezvous at the Marriott, dinner full of laughter with Bob and Melinda or Amy,  call Linds, write Marcus, make Chili for Scott and Lauren the list goes on and on reminding me that I have a life to live despite this situation. Having said that, I must know my limits, and what I am capable of right now, pushing beyond my threshold right now is just self inflicted punishment. Bless my dear friend John, who helped me through my bar shifts at the Playhouse over the last month by making adjustments so it was easier for me when I struggled. I love working there so much and the thought of ever having to give it up is unimaginable to me. I have walked around in shoes that carried 650 lbs at one time barely able to move, this feels oddly the same, but I am not. I need to remind myself of that each and every day at all costs. I am the person who has done all the work to get to where I am now, and just because I don’t like it does not mean I can’t overcome it, or that this is where I will stay.  I might need a little time to adjust to the meds, might be a little slow on the move till I get my knee fixed and I will have to make adjustments to my life, I am sure in the hell not giving up now. There are so many people who have been dealt a worse hand than thi, though at times in the still of the night the darkness so present it reaches out to me, I know dawn will come and the darkness will pass and these hard days will pass as well.

Here is what I have learned in the last several weeks.

I have a new level of understanding when it comes to compassion and judgement. I am not motivated to get enraged by crazy drivers and could care less if someone cuts in front of me at the grocery to steal a spot I was waiting for, I just assume they need it more than I do. Many times I am in more pain than anyone would ever know so now when I see someone struggling just a little bit, I often assume that they too just might be fighting through some kind of pain that no one can see. Time matters, I notice the moments I am not in pain and I am amazingly grateful for laughter, great conversation and the stories others share that take my focus away from my situation even Scott’s relentlessly long explanations of the Chicago Cubs prospects for the upcoming season and intricate details of their farm system. There are days I would be so lost without him, I would be lost without all of the amazing people in my life that remind me every single day, alone is not an option. I am not looking for pity just understanding and maybe an extra long hug now and then when I need them.

I will keep writing, finding the humor and life lessons in this hand that has been dealt to me at the table where I currently sit.

 

So. much. love-

L

 

 

 

When I am in pain, these guys know, and are never far away.

When I am in pain, these guys know, and are never far away.

 

 

 

So incredibly true, and I am lucky to have so many amazing friends in my world.

So incredibly true, and I am lucky to have so many amazing friends in my world.

 

 

2 Comments

  1. Linda Troy says:

    A bump in the road, but not insurmountable. A dear friend started the same regime a year ago for similar reasons. She is now starting her PhD in her beloved field of archeology. It is not easy, but it is possible. Stay strong. When you feel weak, depend on your friends. God has more good in store for you and for you to share with others.

  2. Lillian says:

    You’re such a strong person – I know you will find a way to have a life in spite of all your problems. I’m making a donation in honor of you and your three best friends, Tristan, Tully and Maggie.

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