I made a video last night after Krav Maga Class. Short story long: I injure myself more doing daily activities, than when I exercise or train with the supervision of a professional.
When my range of motion was lost, I had to relearn simple things like sitting on the floor and getting back up. It’s a long list and as I become more active, I run into some activity I need to trouble shoot to perform. Luckily, there are people who are trained to help!
As a patient, I don’t need a day to make me aware of scleroderma, but I am glad there is a day proclaimed for scleroderma awareness.
Today, you will read about patients fighting for their lives and treatment. I’m going to do something just a little different: I’m going to show you what I can do because of treatment available for scleroderma patients.
I am here because of research and exceptional care.
I also am here because I have learned to be my own best advocate.
I am also still here because scleroderma is not my life.
Instead of providing a list of how it’s not, here are some pictures of me fighting. This is Kevin and he was kind enough to fight with me at West Coast Krav Maga.
If you have scleroderma, remind yourself it does not have you. If you don’t have scleroderma, share something hopeful about patients with scleroderma, or about breakthroughs in research, treatment and care.
I say share something hopeful, because scleroderma is a debilitating, soul sucking fatal disease. Twenty years ago, I did not think I would still be here. I certainly didn’t think I would be able to have my healthy nine year old son and I did not expect to be working my way to be a yellow belt doing Krav Maga.
What would I say to someone newly diagnosed with scleroderma today?
I would say: Expect the unexpected. Don’t give up even when it feels hopeless. Get treatment for depression. Exercise.
Scleroderma is going to knock you on your ass. It may take a while, but you can get back up. There are no guarantees, only hope. Keep going. Get back up after you get knocked down, and get your hair pulled every now and then.
I have pulmonary fibrosis with my scleroderma. I speak to the parts of my body like they are separate entities to remind them I know they are plotting against me and I will keep throwing a wrench in their maniacal plans to kill me. I love my lungs for so many reasons, but they are part of this plot, so I am going to keep them submissive by exercising them. My lungs used to complain, but now they are in compliance.
It used to be really hard to exercise. Walking across the room took effort. Then, I discovered yoga and I learned deep breathing to get those lungs expanding. Once my problem – sarcoidosis- was identified as the culprit, things got even better. After years of difficulty breathing, I was finally diagnosed with sarcoidosis. The symptoms were mistaken for scleroderma, because difficulty breathing is a common symptom. But persistence paid off, I read my own radiologists reports and brought them to doctors until one finally ordered a PET scan and thoracic biopsy to find that sarcoidosis granulomas were making my lump nodes swell. This restricted movement of my lungs so they could expand, thus creating difficulty breathing. Now I am on the right medication to keep those granulmas in check. Stress does make those granulomas swell, so I also have sedatives handy. How can I face what I need to do in any situation if I have trouble breathing? Don’t judge, it works. I have to be able to breathe or defeats the purpose- of everything.
Now, back to the pulmonary fibrosis: That’s courtesy of scleroderma. My lungs are scarring, but I am keeping my lungs working by making them work. I have a use it or loose it mentality. Of course there are no studies I can site right now, but fighting a disease is 10% physical and 90% mental. Or 10% mental and 90% physical- again, who cares, our mind can be the most powerful part of our bodies. If you tell yourself your dying, that’s true whether we have a positive attitude or not. We’re all going to die eventually. Some of us just have an idea how. And even that’s inaccurate because I could fall down a flight of stairs and break my skull and none of the treatment and meds I have been taking could help me with that. So, can we really control what life throws at us? For our purposes and lack of time we have for a philosophy class this minute, the short answer is, no. But we can control how we face them.
So, how am I facing the ongoing progression of my lungs scarring into fibrosis? I am working to sculpt my ass into perfection. That’s right, I am taking the focus off whats going on with my lungs so I can wear a bikini and look damn fine. And I don’t mean unhealthy looking either, I want a fine ass I can be proud of. The side effect: I am eating healthier- no, I’m not starving myself. I had some yummy pineapple upside down cake, soda and what may have been the best steak tacos in my life, last sunday. Nthing suer complicated, I am just committed to doing at least 30 minutes of cardio fitness every day.
Back in 2005, I stated with deep breathing. I even wrote a post about how deep breathing is exercise. This is an updated version. I think about what is going on with my body and no matter what I do, until there is a cure, my scleroderma and sarcoidosis will continue to progress. My condition is stable with medication, but I know I need to do more than medication. Not just for my symptoms, but for my own sanity.
Some of you may not know this, but I have a tendency to be a control freak. When I was first diagnosed, I tried to control acceptance of my symptoms by simply ignoring them. I continued to drink and occasionally smoke. Then, once I quit those, used my energy to point out what I perceived to be everyone else’s problem. Finally, I faced myself, accepted what was happening and continue to use that acceptance to stay alive, active and sane. (Determination of my sanity is entirely subjective by my own observations.)
Then came a time when I took a look at what my body is doing and for lack of a better term, freaked the
f**k out. Then, I remembered the most important thing I learned from The Hitchhiker’s Guide to The Galaxy and stopped panicking. Reading the book Illusions, by Richard Bach has helped tremendously as well. My point is, it’s all about perception.
So, the family friendly term for exercising is: I do it for my health. The truth is, I’m a bit vain and I’m using that to motivate me to exercise. I want a booty I can bounce a quarter off of (see, vanity isn’t all bad, it helps me breathe.) The “secondary” benefit of my lungs working, keeping that fibrosis from hardening my lungs and being strong for the fight is the icing on the cake. Right now, I just want to look good on the beach. Because that’s where I want to be: Living in the now.
I have returned to Krav Maga Classes. I kept putting it off because I was so busy, I felt it would be too much. Boy, was I wrong. I went back to my first class two weeks ago and felt energized and empowered after my class. I am working to make more time for it, but easing back into it is the best choice for me. I love how my instructors help me adapt, and do things I never thought possible. Another thng I like about the school I do attend is their emphasis on self discipline, respect for others and violence as a last resort. I feel balance balance between my inner warrior and facing the world calmly.
I also do yoga at home using DVD’s. I plan to join a local yoga collective and attend classes once my budget is squared away. Today, I will do a short yoga DVD. I need to work on m deep breathing. Not exercising January and February while I moved has made a difference in my lung capacity. I can’t take those deep breaths. After evaluation and approval by my doctors to do exercise, I have experienced the ups and downs of not staying consistent. I don’t just feel the flab. The muscles in my chest become stiff and restrict the expansion of my lungs. So, there’s that. And here I am again back at square three. Square one was when I could barely walk, so I can move easily, Square 2 was finding things I like to do to exercise. Now, at Square 3, it’s time to make these activities consistent. I have such commitment issues, bit I am very optimistic about this one.
Not to mention that if I stick with this I will look fabulous this summer in a bikini top and board shorts! Yeah, I’ll post pictures in June- maybe to help raise awareness. If Curvy Girls can get 1.9 million “likes” on Facebook, I can do something with this potentially hot body. Look, the world is filled with beautiful women of all shapes and sizes. When I die, I plan to donate parts of my body to scleroderma and sarcoidosis research. While I’m still here and looking good on the outside, why not use my body to raise awareness? Look out Curvy Girls!
Have a great day!
For more information about scleroderma and how you can help research for a cure, or raise awareness, here are some helpful links:
This has to be a quick one today, I have an infusion.
Last night, I had a great Krav Maga class. I felt very good, but I forget sometimes, that I maintain a regular level of pain. We’ve all been at the doctor’s office and asked to rate our pain. My reply is usually, ” 2, but nothing out of the ordinary.”
I don’t quite understand the whole pain scale thing. I can maintain a conversation while tears pour out of my eyes. It may be a learned response or capability because pain is such a part of my life. I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.
That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done. My hands hurt constantly. There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin. I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”. It’s going to exist no matter how much I talk about it. It’s not going away. I want it to, but it’s not. And yes, I ignore suggestion to use things like Dragon Speak. It’s a great program, but it messes with my thinking. Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff. I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.
I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask. My point is, I’m in pain. I feel better when I move. I have found a way to move with my pain, but focus on my activity. The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?” If it’s my normal, I have my own way of focusing on the task. If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help. When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt. Ways that I can do an activity and achieve an objective without hurting myself.
So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.” Everyone’s experience with loss is different. Where I am was not an easy place to get to. I am fortunate enough to have great mental health care from the Veteran’s Healthcare system. I hope someday everyone will have access to the great healthcare that I do. I write because I want people to know it exists. It was an uphill battle for me to get it and I want others to get it without the fight. Access to healthcare is part of the big picture of surviving the chronic illness fight. Staying active is a personal fight but it can be done.
Okay, I hope that made some sense. I need to get going. I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments. Staying active while in pain isn’t easy. pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life. If you have so something that helps you “live with your pain”, please leave it in the comment section. And if you would like to tell me that this was not helpful, I want to know that too. Thanks for reading.