Eating Healthy

I can't believe I am actually going to write a post about health eating.  Isn't there enough of these already?  Absolutely!  But I'm not going to give you any suggestions on what to eat.  I'm just going to tell you what I've experienced.

I come from a family of active people with high matabolisms, so as a child and young adult I could pretty much burn off whatever fattening, over processed, guilty pleasure I ate.  When I turned 30 I started to notice that I couldn't really do that anymore without a more concerted effort in the exercise ring.  Now at age.....cough 39.....again I really need to watch what I eat.  This isn't uncommon for anyone on the planet. However, if you have an autoimmune disease, weight isn't the only thing you need to consider when thinking of starting to eat better.

Fatigue. That's right, every autoimmune disease suffers best friend.  Fatigue is the guy who comes over uninvited and drives you nuts.  He bothers you for attention to the point where you can't do what you had planned for the day and then when you have finally given up and head to bed, he's there too. He tickles your nose and when you wake up he hides at the end of the bed.  Fatigue has a tagalong friend called Brain Fog.  Brain Fog, loves me and goes everywhere I go.  Recently I changed jobs and ol' Brain Fog came with me.  It got to a point where I was started to get really worried.  Brand new position, new boss and I am having to concentrace twice as hard on everything everyone is saying.  I was petrified I was going to miss something.

Now let me back up a couple of months.

I developed a rash on my leg that wasn't going away.  When I went to see my Rhuemy we discussed if it could be caused by the Humira injections I was taking.  We couldn't rule it out so I asked if it would be possible to stop the Humira and go back to Plaquinil.  She agreed and here I am.  I have noticed that I have more pain and stiffness now, but with several years under my belt I have better skills for dealing with it.  What really increased was the fatique and brain fog.  I knew I had to get a handle on these.  Like most people I need to work and I want to spend time with family and friends.

I now have an elliptical in my home and am starting to exercise more.  The other change I did was to eat much better meals.  This included more fruit, veges, dairy and less processed foods.  I stopped drinking soda and stopped buying salty or chocolately treats.  That was the first step and it helped a little, but my brain fog was still really bad.  Then my mother turned me on to these pre-made salads you can buy at the grocery store.  Not the salad in the bag, this is more like an individual salad serving.  It has the lettuce, cheese, protien, dressing, etc. all package together.  Even a plastic fork.  I took those to work for a couple of days along with a greek yogurt some fruit and a water.  After about 3 days I noticed the fog had really cleared up and I have a bit more energy.  That's enough of a result to encourage me to continue doing it. Which led me to this thought....

When you have an autoimmune disease your dealing with that, a disease.  Your body is constantly working overtime.  That is more than enough to have to deal with day in and day out.  So why make things worse for yourself by not only dealing with RA, but also the effects of a sugar rush or too much weight on my joints or the effects of clogging my arteries with too much fatty food.  This doesn't mean that I have entirely cut out a treat or two.  But it's not worth it in my mind to over indulge in those because quite frankly, I have enough to deal with.

Stretching

     Exercise.  What a dreaded word.  It's a four letter word with friends.  As I have gotten older I have learned that it takes more and more effort to stay fit and healthy.  As a person with RA I have learned it is really important to be fit and healthy. 

     When I was first diagnosed I noticed that I could not raise my hands above my head.  Being in my thirties I found this very disturbing.  I had asked my doctor what I could do as exercise and her answer didn't make me smile.  An elliptical.  She said I needed to avoid placing pressure on my joints and this was a good form for me.  It's not that I don't like them.  I harbor no ill will towards the machine.  It's just that an elliptical has always conjured up visions of a gym filled with people, on machines, going no where.  I've never liked the thought of paying for a gym membership and now the thought of paying for the use of only one machine in the entire gym just seemed silly. 

However, the place I was renting had no space for an elliptical which left me in a bit of a pickle.  I asked if there was anything else I could do and she said it could only be stretches or exercises that put no strain on my joints.  How am I going to do that?  And then it dawned on me, the elderly.

That's right, I looked towards the stretching and exercise routines that are recommended for senior citizens.  You can find many to choose from online.  At first I just started with stretching.  I wanted to get my range of motion back before trying to do much of anything else. I did all my exercising in the morning because by the end of the day I was exhausted and utterly unmotivated.  Plus I hoped that by stretching in the morning it would help me fell better throughout the day.

Here's where I'm going to stop and say if you have RA or any other autoimmune disease you need to seriously consult with you doctor before beginning any type of stretching or exercise regiment.  One day of doing the wrong exercise or pushing your body too hard could leave recovering for days or worse doing some real harm to your body.

My initial stretching exercises were very gentle.  I want to emphasis the gentle part.  At no point during my workouts then or now do I wake up the next day feeling sore.  It is my opinion that if someone with an autoimmune disease pushes hard enough to make them feel sore the next day they are going to do more damage than good.  We have to be able to admit to others and more importantly to ourselves that these diseases require that we treat ourselves differently.  This doesn't mean we don't challenge ourselves, we just need to do it in smaller increments. 

I would do my stretching while sitting on a kitchen chair.  The couch or Barco lounger just isn't going to give you enough support.  I would try to sit as properly as I could and slowly raise my arms as far as I could.  When I started to feel pain I would stop and slowly lower my arms back to my side.  I would do this 10 times and the last time I raised my arms I would go a little further and hold for a second or two and then lower them again. 

For my knees I would place my hands on the side of the chair just for balance and keeping one foot planted on the ground I would extend my other leg out.  Not lifting the leg, just extending out as far as I could again stopping when I started to feel pain and then slowly bringing my foot back to the ground.  I would alternate legs until I had done ten for each one.  Again the last extension for each leg I would try to go just a little farther.   

For my ankles and my wrist I did pretty much the same workouts which consisted of up, down, side, side.  Very gently.  I was just looking to increase my range of motion.  Sometimes I couldn't do 10 cycles of these and that was okay in my book.  I accepted what I could do that day and strived to do 1 more the next.

Fingers.  Oh my the fingers!  How they didn't want to move!  To get these going I would form my fingers like a claw and then slowly curl them inward and then straighten them back out.

In the beginning this was pretty much all I could do.  But after a couple of weeks I was able to add a couple more stretches.  I would stretch my elbows by holding my upper arms against my body and bending and straightening my elbow.  I would turn my body at the hip to give my back a gentle twist.  Again these were done from a sitting position and done slowly, gently and stopping at the point of pain.

After almost 2 months I was able to raise my hands all the way above my head.  I was extending my legs all the way.  My wrist and ankles were doing a lot better too.  My fingers still felt thick but at least they were working better.  I now felt I could start doing more muscle building and fat burning exercises.  Still gently, still listening to my body and paying attention to my pain levels. 

Fatigue

In my opinion fatigue has to be one of the biggest pains to deal with when you have an autoimmune disease.  But having constant fatigue makes perfect sense.  The immune system of the human body is our own personal branch of the military.  It’s protecting us from invaders like bacteria and viruses that want our body’s limited resources.  When invaders are detected, the white blood cells head out and attack.  So think back to the last time you had the flu.  While your white blood cells were killing viruses like PAC-Man eats dots, your body was reacting by having a fever, a running nose, maybe even a cough and you were tired.  Your body is working overtime to fight off invaders and you were tired because your body wants you to rest while it replenishes those resources. 

So for someone with an autoimmune disease, the same thing is happening every single day, 365 days a year.  There is no day off from “feeling sick”.  The immune system of someone with an autoimmune disease has gotten its orders wrong and is now out attacking its own body.  The white blood cells are going after normal tissue and cells.  It’s the worst case of friendly fire you’ll ever see.  Talk about a publicity nightmare.


Here is a great article on Rhuematoid Arthritis and fatigue;

http://www.hss.edu/conditions_mastering-impact-fatigue-ra.asp

How Important is Your Doctor?

How important is your physician? I found out just how important this past month.

I was very, very lucky that my first Rhuematologist was one of the best. She explained everything to me. The pros and cons of the medications I was taking, the procedure we had to follow for insurance purposes and what all my test results meant. And although I sometimes had to wait over an hour to see her I never minded, because when I did she made me feel like she had all the time in the world for me.

Several months ago I changed jobs and with a new company I also received new insurance. I found out that my beloved Rhuemy was not covered which meant I could either pay out of pocket to see her or get a new doctor. Since I'm like most out there and don't have a lot of money I decided on the latter.

My new doctor turned out to have a completely different philosophy when it came to my care and after 10 minutes decided that I shouldn't be on the medication that I was on and refused to renew any of my prescriptions and wouldn't prescribe anything for me. Instead she wanted to redo all my tests again and then said that afterwards she would probably put me prednisone. A medication I already had experience with and knew would keep me up all night. Despite my husband's and I stating our concerns in regards to how this plan was going to help me deal with my pain and the disease she insisted that the disease just wasn't that bad.

She never asked me about my pain levels and I had to insist on telling her because the only thing she was taking into consideration was my blood test results and if I had swelling in my joints. At this point I should give you a little back ground. While my ANA test was positive in 2010 all other test results were normal, which makes me a seronegative. On top of that I have almost no swelling, so I'm atypical of a text book person with RA. For most doctors swelling is a sign of activity, so no swelling equals no activity. And my new rhuemy saw it as just that.

I ended up walking out of the office in tears.  I went home and made an appointment with my old Rhuematologist and now pay out of pocket to see her.  It's worth every penny I spend.

Cooking and Pain

Years ago I took a French Pastry cooking class. Every Saturday for several weeks I would spend the day in a classroom learning techniques and dishes with complicated French names. I learned how to mix wet and dry ingredients without a bowl and what was involved in making a really great Ganache. Whisking, lots and lots of whisking. I loved every minute of it. I could make tarts that looked like flowers and eclairs that looked like swans. OK, the chef's looked like swans, mine looked more like an overweight goose with a permanent kink in his neck.

But despite my lack of skills in creating edible fowl, I loved making pastries. I enjoyed the whisking and the mixing and the labor that went into each dish. I loved how the smells would fill the house and how it made me feel comforted. It could have been all the fat and cream too, but let's say it was the smells. When I started having symptoms of RA, it became too difficult to bake. Something that I used to look forward to now caused anxiety and pain. My joints could no longer handle the kneading or rolling or stirring that was required, licking the bowl was still OK though.

So now that I have been on a medication regiment for almost a year I have started to try and find new ways to do the things I love. So here are some tips to make the love of cooking easier.

Get someone else to cook for you!  OK, so we can’t all afford personal chefs, nor can we expect our spouses take on the roll of Julia Childs, so let’s move on. 

·         If you suffer from pain in your legs or back a rubber mat may be the way to go. It could ease the stress on your lower joints. If you have a stool you could alternate between sitting and standing.

·         Stand mixers, food processors and mandolins help with the mixing and the chopping of ingredients. They save on time as well. However, stand mixers are heavy and awkward, so if you can't store it on your countertop, try to have someone else bring it out for you.

·         Limiting the amount of fatigue cooking causes you is a big deal, so if a recipe states that a portion can be done ahead of time, do it. Dividing the work over several days is better than dealing with a flare because you spent all day in the kitchen.

·         Some recipes, especially those for baking, will require you to combine all the dry ingredients right before mixing it with all the wet ingredients. So why not do this the day before? You can split your "baking" over two days and minimize the fatigue. Just keep your dry ingredients in a covered bowl in a cool, dry place.

·         You can do the same with measuring out ingredients.  You can measure out as much as possible on one day and then combine them on the next.

So let’s get back into the kitchen and try something new!

Elliptigo a go go

While on my way to do some grocery shopping I drove past a gentleman riding an Elliptigo.  You can take a look at them here.  I had never seen one before and immediately jumped online when I got home to take a look.  Billed as a cross trainer to help improve an athletes training program I couldn't help but see the benefits for those who have been told by their doctors that they need to exercise without adding stress to joints. 

They have two models one for mostly flat terrain and small hills and another for those that want to tackle steeper hills.  They also have blocks that can turn the Elliptigo into a stationary bike.  The only drawback I can see is pricing.  The most inexpensive model is around $1700.00 dollars and for someone that has large medication bills each month or may be on permanent disability this can be difficult to come up.  However, if anyone remembers that when the microwave first came out it was $800.00 dollars and now you can pick one up for $50.00 bucks.  So I'm going to keep my fingers crossed and maybe the Elliptigo will come down in price in the future.

April Showers

One of the most difficult times in my day is the mornings.  When the alarm goes off and I have to reach for it and my body doesn’t want to move.  I get out of bed and all my joints are still and painful.  I shuffle around because my knees and ankles don’t want to bend.  My hands are so stiff and painful that doing anything requires both hands. 

Taking my morning shower does help loosen up my body.  The warn water eases the pain and helps me get movement back into my joints.  But a shower or bath still requires a lot of movement, reaching and bending.  So I have a few tips to make the time in the shower less painful.

• Those with an autoimmune disease can have difficulty holding, lifting or even squeezing bottles. Push pump bottles can make things easier.  You can use your fingertips, back of your hand, arm or even your elbow.
• Bending can cause pain in the spine or lower extremities.  So keeping everything up above the waist line can be really helpful.  Using a shower caddy can help keep everything right where you need it.  Shower caddies come in various sizes and styles.  There are pole designs that fit in the corner of a shower or bath or those that hand from the neck of the shower head.  There are even ones that span the width of the tub for those that enjoy a bath.
• Washing our bodies can cause us to bend as well.  Using a bath brush can help us eliminate some of the bending while still reaching our feet.  A bath brush looks like a mesh latherer on a stick.  In fact it pretty much is a latherer on a stick.
• For the ladies, Ahh vanity, we twist and stretch trying to reach all the little spots that hair can grow.  We want smooth skin but most of us can’t afford to have laser removal done.  So it’s a razor and some shaving cream that we turn to.  If you have noticed, the pumps on shaving cream bottles are designed to be used by your finger while holding the bottle.  For me, this is really difficult so I began looking around for an alternative.  What I found was the Schick Intuition Plus.  This handy little razor has shaving moisturizer built in and for me it has eliminated the step of lathering up, sweet!  Sorry gentleman, I haven’t been able to find something similar for you.  But maybe one of the men out there can tell us which is easier to use, a manual or electric razor? 

Pills, Pills, Pills

It seems that if you have an autoimmune disease then pills are a common part of everyday life. We have pills that help us fight the disease and we have pills that help fight the pain.  We have pills to help us fight the side effects of the pills that help fight the disease and pain.  It seems we have pills for just about everything and our days are divided up into the times we need to take our pills.

Every Sunday I fill my pill box.  I take out 4 bottles and begin filling for each day.  Hydroxychloroquine to fight the disease, I take two Monday through Friday and one on Saturday and Sunday. Tramadol to help fight the pain, I take two for the morning and two at night. I take one multivitamin and one vitamin D recommended by my doctor, to keep healthy levels of vitamins and calcium.  There have been studies done that show that Vitamin D may help reduce pain in patients, but that's another topic for another day.   

I keep Tramadol in my purse for the middle of the day pain and Voltaren gel at home as well as at work to rub on my joints when the Tramadol isn’t enough.  I keep Advil and Meclizine with me because the side effects of my medication can cause dizziness and headaches.  I even have to have cortisone around because Tramadol causes the skin to itch.  

All of this pill taking can get a little frustrating to me. Especially on the days when it seems that none of it is working. When my hands hurt so bad I continually drop stuff or my knees and ankles are so stiff it's hard to walk. I have to keep remembering that takes a long time to figure out the right combination of medication with your doctor. I keep telling myself that somewhere down the road I'll find that perfect combo and start to feel better. But at times I do get cynical. Like when someone tells me that I'm lucky because “there's a pill for that”,  I want to plop down the 10 pills I've taken that day and tell them, “Does this look like luck to you?”