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?”

Sleeping

Getting enough rest is one of the best things we can do for our bodies.  But it can be difficult to go to sleep and then stay to sleep.  Pain can keep you up or even certain medications.   So we need to make sure our bedrooms are the things dreams are made of.

I have learned that keeping to a sleep routine helps me feel more rested for the next day. I try to go to bed at the same time every night and wake at the same time every morning. I also learned that the bed is one of the most important parts to attaining a good night’s sleep. Our old bed was in bad shape. It was caved in and gave very little to no back support. I was not sleeping very well and waking up frequently at night in pain. So we decided to buy a new bed and after several months of researching we decided on a sleep number bed. Now I'm not going to recommend this as the best bet for everyone, this is just what worked for us. With a sleep number bed, I am able to adjust my side depending on how bad my pain is that day. This helps me get a better night’s sleep and be able to wake-up feeling more rested.  We also keep our bedroom slightly on the cool side and although we do have a TV in the bedroom it's rarely on. I am sleeping through the night most nights and although I still wake up with stiffness and pain, that’s just part of having RA, it’s less severe than it used to be.

I do other things to help me sleep. I try not to drink any sodas or caffeinated drinks after 4 PM. If it's getting close to my bedtime and I'm noticing that I'm not sleepy I will drink a cup of decaffeinated chamomile tea. I also try not to exercise right before bed. I have found that exercising actually stimulates my body and keeps me awake.

I also saw this great article in Arthritis Today about natural sleep remedies.  You can read it here.

So these are just some of things I do to help me get a good nights rest. What are some of things you do to head off to slumber land?

My View on Autoimmune Diseases

There are a lot of autoimmune diseases out there.  Some have recognizable names like Lupus or Rheumatoid Arthritis and others are more obscure, such as Ankylosing Spondylitis , say that three times fast.   These types of diseases are the result of a person’s immune system entering hyper-drive and mistaking normal tissues and cells as foreign invaders to the body.  This is the complete opposite to what you would see with someone who has HIV/AIDS.  For them, their immune system is working at a pace turtles would envy.

I was diagnosed with Rheumatoid Arthritis in 2010.  Like most people who are diagnosed with an autoimmune disease, I spent a long time knowing something was wrong but not being able to have it diagnosed.  It can take people years to be diagnosed with an autoimmune disease and during that time they are dealing with the effects of a disease that is out of control.  Each disease affects the person differently.  Lupus mostly attacks the internal organs and skin, but it has a soft spot for the joints as well.  While Rheumatoid Arthritis considers the joints of the body its primary goal, it also increases the person’s risk of heart disease by 50%.  My friend Ankylosing Spondylitis up there will literally fuse the spine together leaving the person permanently hunch over and limited movement.  Here is a list of just some of the autoimmune diseases people can be affected by.

Lupus
Rheumatoid Arthritis
Ankylosing Spondylitis
Graves' Disease
Poriasis
Psoriatic Arthritis
Fibromyalgia
Sjorgen's Syndrome

Goodpasture's Syndrome

There are many other autoimmune diseases and maybe even some that have yet to be discovered. Living with an autoimmune diseases can be a real struggle. You fight and work to manage your symptoms every day with nothing to show for it.  Most symptoms of autoimmune diseases can not be seen.  Because of this most people don't even know that someone has autoimmune disease. You could be standing next to someone the grocery store that has Lupus or work with someone who has Fibromyalgia.  When people with autoimmune diseases tried to explain to someone who has no experience these diseases they can get funny looks of disbelief. We don't look sick.  To the outside world those with an autoimmune disease look fine,  they look healthy, they look just like everyone else. It's difficult to carry around x-rays showing the damage done to your body.  Unless you've got really big purse.

Although autoimmune diseases affect a person differently there are some common symptoms.  Things like fatigue or an extreme sensitivity to cold or light. Having stiff and/or weakened joints or muscles. A high fever or high body temperature or even fatigue, dizziness, and inflammation.  Unlike the commercials would have you believe just two Advil a day does not go a long way to helping with the symptoms of an autoimmune disease. Those with an autoimmune disease normally take medication that suppresses their immune system. These medications can have serious side effects, so we have to decide if dealing with the side effects outweighs living with the symptoms of the disease.  But despite all the symptoms, all the problems, all the pain and frustration, people with autoimmune diseases can and do live happy, healthy lives.