Thursday, November 29, 2012

My Best Laid Plans: Yoga and Autoimmune Disease

It is always a bit of a shock how quickly my health can change with autoimmune disease. Twenty-four hours ago, I was  planning to go to my first yoga class in a number of years.  It was advertised as a gentle, restorative class for those with  health conditions and chronic illness.  I've heard and read that yoga at the right pace can be helpful for those with autoimmune conditions. It was something I had been thinking about doing for a number of weeks and this would be my day.  For  me, this was a big step--feeling well enough to participate in a group activity or class--a real indication of my health  progress.

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So I created a schedule for the morning to make sure that I got out of the house, putting the time of eating breakfast and even taking a shower into my smartphone.  I was trying to plan and schedule for all possible contingencies so there would be no  reason that I would not make it there.

Ha. Well, this contrary body of mine had a different idea. It reminded me that I don't run my calendar. It's my body that  has the big say.

Instead of going to yoga, I found myself in nerve pain once again. Just when I felt like it had been away long enough that I could plan my own schedule.  Once it started, I knew that yoga was out of the question.  My day went from being centered around  trying a new activity to just getting through the hours, minutes, and even seconds of the day. I started to write about my pain, but decided no.  Not now. I'm not going to let it back in.

I kept running over in my head was there something I did that triggered this.  Did I over do it with Thanksgiving travel and  family activities? I know that's not how it works, but at times it's impossible not to think this way.

Well, here's hoping this is a temporary problem caused by some combination of new medication and cold weather. We'll all find out together I suppose. If you read a post about yoga next week, you'll know things are under control.

For now, I would love to hear about others' experiences with yoga who have autoimmune disease and if it has been beneficial.

Tuesday, November 20, 2012

Preparing for IVs, Sticks, and Pricks

Getting my blood taken, being hooked up to IVs, and having infusions have become a fact of life for me.  It's a regular routine I know I share with many other sjogren's patients and those suffering from other autoimmune conditions.

I've learned a few things over the years that helped me and I thought I'd share. Hopefully others have tricks or tips they can add to these suggestions.

My veins are hard to access. It's not something I thought much about before being sick, but it sure makes life difficult now. The nurses trying to stick, prick or prod me in various ways always had a hard time getting a vein to work, resulting in a number of sometimes painful attempts and an array of multicolored bruises.  I knew the needles weren't going away, so I embarked on a new routine to see if I could improve the condition of my veins. In combination, the practices below have helped quite a bit over the past few months.

Weight Lifting. No, I'm not turning into a body builder. (As my husband reminds me the steroids I take don't lead to Barry Bonds type home runs.) However, I realized that I was weak from being basically unable to exercise for three years because of illness. I needed to build up my arm muscles to make the veins come to the surface. I started to to lift weights at home to build up my arms. Initially, I tried curling 3 pound dumbbells…but they were too heavy for me after I tried just a couple of bicep curls.  I then moved down to 2 pounders and these were much more my speed. I started very slowly and have since been able to work my way up to doing a variety of exercises with the 3 pound weights. Maybe I will eventually make it to 5 pounds if this vein building routine continues, but that is probably a little ambitious. I can visibly see the difference in the veins in my arms and hands.

Drinking Water. This may be obvious to many, but I started making a point of super-hydrating 24 hours before my infusions. It's made a difference in making my blood easier to access. 

Hand Warmers and Gloves.  My hands are usually cold from Raynauds and I find the temperature in hospitals is never quite comfortable.  I knew having cold, blue hands always made for a hard time putting in an IV, but I wasn't sure what to do about it.  When I was at a sporting good store one day, I saw a box of hand warmers and a thought popped in my head. What do you know, they helped a ton.  Whether it is winter or summer, I now show up to the hospital wearing a pair of over-sized gloves each filled with two hand warmers.  I don't take them off until the nurse is about to stick me. It really helps my veins pop out. 

You know that you have spent too much time getting medical care when the improved condition of your veins becomes a source of pride. I realize this is probably not the most interesting post for the average reader, but these tips and discoveries have made a huge difference for me and I thought they might be useful to others who frequently get blood taken or infusions.  Please share away if you have others.

Friday, November 9, 2012

Telling My Health Where We Stand

It is currently Wego Health's National Blog Post Month (#NHBPM).  My favorite prompt from this week was to write a letter to your health.  I love this idea and figure it is about time that I have a heart to heart with my health and let it know where we stand.

Dear Health,

I have a question for you. Can you take a vacation?

You should know by now that no matter what rare or difficult health problem you lay down on me that I will refuse to give up.  Whether it is Sjogren's and its roller-coaster of complications--including autoimmune neuropathies, uveitis, or, as it is right now, angioedema--that you have put me through, I will research treatments and find the right physician who can help me no matter what the challenge.

It seems that you never really rest.  My guess is that your favorite game is whack-a-mole. Yes, it must be what you play. Just when you get one condition under some control, you get bored and decide something new needs to occupy you.  Well, I can play whack-a-mole right back. I will keep fighting to knock you back into your hole.  I am determined to live as normal a life as possible despite your tireless efforts to prevent me from doing otherwise.

This does not mean that there are not days where you seem to be winning -- the days when I am in pain, fatigued, my joints hurt, it is hard to catch my breath, or my face swells up like a balloon.  But I will not stop and I will not give up.  While I must try to accept that that you will not be a stranger anytime soon, continuing to be one of the most challenging parts of my life, I will not let you break my spirit. And when I have those moments of mental fatigue and my hope is waning, I will lean on my husband, family and friends to support me and encourage me onward. I will make you cooperate in some way.

I will not only spend my energy trying to fight you and be as healthy as I can, but I will also work to bring awareness and research funding to Sjogren's and other autoimmune diseases. I hope that you will become more pliable, controllable, as new treatments emerge.  That you will no longer be the ultimate struggle and hardship in not just mine but so many people's lives with chronic illness.

I must admit that while we are at odds, I have learned a lot from you.  I am resilient and a fighter and can handle much more than I ever thought or really wanted to for that matter.  I do still implore you to get tired and take a long vacation one of these days. It would allow me to take a much needed health holiday from doctors and medicines and not feeling well, but as long as you insist on being hyperactive --I have my boxing gloves perched and ready.


Saturday, November 3, 2012

Reflections on Sandy

Darkness of Sandy
Like many others across the northeast, I have been affected by Hurricane Sandy.  My husband and I are some of the lucky ones. Our home is intact and without major damage and most importantly, we and our loved ones across the region all made it through the storm safely.  We are still without power, heat and phone, as are many in our area .  The tragedy of the storm is obviously widespread, but I thought given the topic of this blog I'd add some color on the everyday challenge it poses for someone with my medical conditions. For a couple hours on Friday, I was able to make my way to an office that has power to warm up, charge up, and write this quick post.

Living without power and heat has added a new dimension to trying to manage my health conditions.  Taking medicines, cutting pills and trying to make sure that I am taking the right one in the right amount by flashlight is definitely a challenge. There has also been the issue of timing of medication. Yes, I am one of those people who rely on my cell phone to tell time and I never wear a watch.  Those watches that I do have are tucked away somewhere very safe, definitely not too be found during a long-term power outage.  This obviously leaves more room than usual for error, but taking my medicines a bit off schedule is better than not taking them at all.

Luckily (and not by my own volition) I knew where all of my medicines were when hurricane hit.  My husband, a former Boy Scout, made me pack an emergency “to go bag” in case we needed to leave our home with a moment’s notice.  Yes, I did complain and whine when he insisted I put them all in a bag by the door...since it was inconvenient to keep walking over to use them, but, as much as I hate to admit it, he was right.  If it weren't for that bag, my medicines would not have been organized and easy to access in the dark.

In addition, I have major food challenges.  As I have written about in previous posts I have very severe food allergies, my newest one being to the ubiquitous corn.  Most non-perishable foods have corn or corn derivatives in them, which makes refrigeration particularly critical for me.  And I can't risk needing medical services when many of our hospitals are without power and closed.  Thank goodness we bought a five pound bag of rice before Sandy hit to keep me going and there have been dry ice distributions to keep some of our perishable items cold so that I have something to eat.  One saving grace is that we do have a gas stove, so I have been able to use it while I am cooking by flashlight.

So, here we are, living like it is 1900.  Playing cards by flashlight and listening to an emergency crank radio that my mother bought me a few years ago (clearly my family worries more about disaster preparedness than I do).  It was charming the first night, but by day two were were ready for things to start to return to normal.  Signing off for now as my brief stint with electricity is over for today.  Perhaps we will be lucky and have power tonight.