Monday, October 31, 2016

Top 20 Things I never Thought I’d End Up Doing
(But My Disease Made Me Do)


    I enjoy writing. And hopefully, those of you who read my posts enjoy them. But I realize that a lot of them are serious in nature due to the topic I choose to write about. Bringing awareness to Chronic Illnesses in general and Sjogren’s Syndrome in particular has become a bit of a calling for me. I advocated for those with disabilities and gave a voice to the voiceless while I had a career, I like to think that I am now lending my words to the millions out there who suffer like I do but don’t know how to explain it their friends and family.
    But after writing so many serious posts, even the ones with humor in them, I thought I’d try to lighten it up a bit. So here’s my top 20 list of things I never thought I’d do. EVER! Enjoy…

  1. Nearly choke on a small piece of cheese during my wedding photos. (guess who ended up drinking more communion wine?..)
  2. Con my toddlers into giving me backrubs by telling them we were going to play cars and I was the mountain the cars had to go over to get to the town.
  3. Drive around swathed in 2 yards of gauze fabric in the summer along with huge sunglasses. (The looks I got…)
  4. Trip on dust.
  5. Empty my purse at the store looking for my debit card have 12 medicine bottles spill onto the counter. (Again, The looks I got…)
  6. Forget stuff. Like Josh is not the dog...
  7. Sit outside in the summer wearing sunscreen, long sleeves, sunglasses, a gauze blanket, and holding an umbrella while in the shade. (Yeah, my kids’ baseball games. SMH)
  8. Match the color of my blush to the color of my facial rash, just in case.
  9. Crawl around on the bedroom floor looking for pills.
  10. Greet my son and his friends with a full syringe in one hand and empty vial in another as they burst into the house.
  11. Have someone call the cops on me because I ran out of gas but I must have looked so bad that she thought I was having a medical emergency. (I was in a lot of pain)
  12. Have to carry a Doctor’s note for my water bottle. And actually have use it.
  13. Have my multiple bottles of eyedrops confiscated at a concert. (I swear the guy thought I was a dealer!)
  14. Wear gloves. Everywhere. All year long. (Bed too...)
  15. Forget stuff. (Did I mention that already?)
  16. Make noise walking up stairs. With my knees. (It scares the cat)
  17. Break a tooth chewing gum designed to strengthen teeth.
  18. Give the phlebotomist directions to my vein.
  19. Stop using knives. (Ya’ know, after that first one goes flying…)
  20. Get mistaken for being drunk walking down the hall.

Well, There’s my top 20. Some of you will relate, some won’t. But I hope all of you will LAUGH!!

Thursday, October 13, 2016

Losing Weight won’t Make Me Better So Don’t Tell Me To Do It


    There is an epidemic in this country. We, as a nation, are overweight. And that has caused a myriad of health problems. But Autoimmune Diseases aren’t one of those problems. So telling those of us who have such diseases to lose weight because we’ll feel better is like a slap in the face. Here’s why…
    First, we’re already sick. Some of us are really sick. And we are painfully aware of that fact. Our illnesses affect every part of our lives. We struggle as parents trying to give our children all we can physically and mentally and carry huge amounts of guilt when we fail. So we go out of our way to do fun things on the days we feel good because we know those days don’t last. We struggle as spouses because we know the relationship will never be truly equal. We will always need more. And we struggle in work, if we can work. We are the employees in the next cubicle that take extra days off now and then but still hear the chatter about us  when we’re present. So we try to work twice as hard when we can be there knowing all along that it may end up putting us back into a flare up. But we do it anyway. It’s who we are, who we have to be.
    We go through all this because we are sick and we know it. Our disease is part of us and it will never go away. We each deal with that reality in different ways, but it is our reality. The good days come and we take full advantage of them. But they don’t last. Whether it’s after just one day or a few weeks, we will fall into a flare up again and we will need to rest. These are the days we feel our disease most acutely. When we can’t get out of bed or have to resort to using the supports many of us would rather keep hidden. The canes, scooters, and wheelchairs that all of know could become permanent fixtures so we fight them as long as we can. On these days, we are at our most vulnerable. And it seems to be that on these days, those of you who don’t understand our lives comment the most.
    So I will try to make something as clear as possible: I am not this way because I am fat. Losing weight will not cure me. And getting more exercise will not end my need for a cane. But thanks for your concern.
    You see, most of us have gained weight because of our disease. It seems that every new med I’ve been put on has “weight gain” as a side effect. And the prevalent use of Prednisone, notorious for weight gain, means most of us don’t stand a chance. The year I was diagnosed, I gained 80 pounds while fighting for  control over my disease.
    Also note that the types of pain and fatigue that come with an Autoimmune disease are not the same pain and fatigue most people understand or ever experience. Go ahead and run a marathon and I guarantee that the pain and fatigue you’ll feel the next day are not even close to what we feel in an active flare. Then realize how much activity we lost when our diseases got going and you can see how weight gain overshadows attempts at weight loss every time. I used to dance, swim, bike,and play volleyball. Now walking a straight line without losing my balance takes effort.
    So, to put it all together, suggesting that losing weight would help someone who has probably gained weight because of medications and loss of abilities due to an Autoimmune Disease and who also struggles with the idea that she’s already not doing enough for family or keeping up at work again due to said disease is akin to a slap in the face. Our diseases are unpredictable. There is no proven way to reduce our pain. What works for one may not work for another. There’s also no proven way for us to lose weight easily. Meds make it really hard. Some of us have problems eating, so dieting is hell. And exercise, unfortunately, can land us in bed for days at a time.
    That’s not to say we don’t try. I have managed to lose 60 pounds over 4 years. We see the good in eating healthy and exercising as much as we can. We just have to tailor everything around our disease. So the next time you see someone who is overweight with a cane, in a wheelchair or scooter, or even just struggling to walk; please take a minute to remember how unfair life is and that not all of us have chosen or can control certain aspects of our lives.

I for one would never want to see anyone else go through some of the “issues” my disease has bestowed on me...

Sunday, October 9, 2016

The Basics Of An Autoimmune Disease


    I am in several support groups online. Some for pain, some for Sjogren’s, some for MCTD… What they all have in common is the fact that we are all chronically ill, and most are diagnosed with at least one Autoimmune disease. So I thought I’d discuss what the nature of an Autoimmune (AI) disease is in the hopes that it would make our world at least a little easier to understand.
    First, AI diseases are NOT the same as AIDS. Yes, they both affect the immune system, but AIDS is a virus that attacks the immune system itself, and AI diseases cause the immune system to attack the body of the person who has. Which AI disease a person has, put really simply, is based on which body parts or systems the immune system attacks. So-I have Sjogren’s, it attacks the moisture producing centers of the body, RA attacks connective tissue, Myositis attacks muscle fiber-get it?
    Second, all AI diseases are considered inflammatory. This is because the basic mechanism of the disease is the immune system. Our immune system serves the basic purpose of defending the body against illness and disease. It senses foreign cells in our system, produces extra immune cells, attacks and kills them. But it also causes swelling. Our body senses pain, and assuming the cause is a foreign agent, does the same thing. Again, a very, very basic description, but accurate.
     How does this make AI diseases inflammatory? For me, my body does not recognise the glands that make tears or saliva. (There’s a lot more, but keeping it simple here.) Every now and then, for reasons I do not understand, my immune system attacks these glands. This is called a flare up by the way. When it does so, because extra cells are produced to fight an enemy that isn’t there, my body swells up. This is why joint pain is so prevalent in the world of AI sufferers even when they do not have RA.
     Next, the best way to stay healthy longer is to avoid flare ups. You see, each time our body has a flare up, it is being attacked. Each attack increases the amount of damage being done. That damage cannot be undone. In my case, I can no longer cry. Good at sad movies, really bad at funerals. And since these diseases are incurable, flare ups will continue throughout our lives. Remember, we cannot control these flare ups. Doing chores will not bring one on and avoiding chores will not guarantee flares will stay away. But there are options.
     I am a believer of using prescription medications. My theory is that we need to do something to keep our immune system turned down, or at least part of it. AI prescriptions are designed to do just that. There are not yet such individualized treatments as a pill for Sjogren’s, another for RA, and yet a different one for Lupus, but progress is being made. By using a medication to assist me in having the fewest flare ups possible, I feel like I am giving my body the best chance at staying as whole as possible for as long as possible. But remember, this is my opinion.
    Some people do not agree with my opinion about prescription medications and prefer a more natural route to deal with their AI disease. Researching vitamin and herbal supplements can shed light on how helpful these can be as well as how many are out there. As this is not my forte, I will say that you should consult a doctor or nutritionist and always look into the quality of the supplements you use. I do use several supplements, but they are basic and doctor recommended such as Fish Oil for swelling, magnesium for headaches, and B-12 for energy. Calcium and Vit D are also on my list. But many people use supplements that I’ve never heard with wonderful results.     
    There are also dietary changes that can help keep AI flare ups at bay. Sugar is known to cause diffuse whole body inflammation. So is white bread. Avoiding these foods so as not to set of a flare up can be extremely helpful in managing AI issues. There are also foods such as pineapple that are great at reducing inflammation. Increasing these while decreasing inflammation causing foods is a powerful tool in managing AI diseases.
    Hopefully, this has shed a bit of light on the nature of Autoimmune diseases and their inflammatory nature. Their is no rhyme or reason as to who gets them, when, or why and the same goes for flare ups once a diagnosis has been made. Any bit of understanding the community in general can gain makes our lives a bit easier!

Saturday, October 1, 2016

I Have A Note


    I have a question. And I want you all to think about it. What is “medicine”? Seriously! What makes an item “medicine”? Does it have to be a pill? Does it have to taste like cleaning fluid smells? Does a doctor have to tell you to take it? What if the thing that your body needs so desperately to work correctly is found just about everywhere on the planet and you can pretty much pick it up within 10 feet of where you are at any given moment?
    I’m talking about water. Yup - cool, clean, water. And your next question is probably what disease can be cured by water? Well, actually none that I know of. But there is one that creates such a dysfunction within the body that it creates a constant need to drink water. It’s called Sjogren’s Syndrome and it affects approximately 4 million Americans.
    Sjogren’s is an autoimmune disease in which the body’s immune system attacks its own moisture producing glands such as the lacrimal (tear ducts) and parotid (saliva) glands. Most people assume that Sjogren’s ends at dry mouth and dry eyes. But it doesn’t. Think of how much our bodies depend upon moisture. Our joints move smoothly due to lubrication that requires moisture. Our digestion requires all sorts of moisture and secretions to work. Our nerves rely on moisture to transmit the signals that allow us to move and feel. And our blood itself is a liquid that needs to stay at a certain volume and consistency to do it’s job.
    So back to my question about water. You see, due to the way Sjogren’s works, many who have it cannot process water correctly due to the digestive issues it causes. When this happens, we can quickly become dehydrated. The best way to combat dehydration? Drink water! Hence the question: what is a medicine…
    Case in point: for me, Sjogren’s flare ups that cause dehydration can strike fast. I start to feel thirsty and I drink, but the thirst won’t go away. I can drink until I feel like I am going to burst, but I will still be thirsty. It’s exhausting and I end up very weak and dizzy. BUT, if I can’t keep up with my body’s needs during the flare up, I will begin to “lose my blood pressure”. I have low blood pressure to begin with so if it starts to go down, it’s a big deal. During my 20 years of battling Sjogren’s, I have landed in the ER for dehydration at least once per year in all but two of them of them.
    So I now carry water with me everywhere I go. EVERYWHERE. Unfortunately, there’s a problem with this. There are certain places that do not allow people to bring in their own food or drink. But I do not consider my water “food or drink”. It is my medicine. It keeps me out of the hospital. Especially during the hot summer months. I understand the argument that these venues usually sell concessions and most have water available for purchase. I even understand the idea that these concessions are how they make their money. But again I say my water is my medicine.
    Look at it this way: I go through 5-7 liters on a good day due to dry mouth and just my normal dysfunctional Sjogren’s body. I don’t know many people who don’t have Sjogren’s that drink that much. Now, the venues that don’t allow food and drink usually do not sell big bottles of water, so I would have to buy several to satisfy my normal needs much less the needs I would have if in a flare up. Also, these venues charge astronomical prices! For the average price of 2 water bottles at most venues, I can buy a month’s worth of pills necessary to keep my constant pain at bay.
    And that’s my next point: not one venue has EVER taken away my pain pills. I doubt that venues ever take away anything perceived as medication ever. (And I have been to some sketchy concert venues that confiscated my lip gloss!) Imagine taking away someone’s insulin or seizure meds. Imagine being told, “You can’t take your nitroglycerin in with you but we sell some really expensive nitro at booth 5”. OK, so that’s a really dramatic example, but I don’t think we should be expected to pay for something that most of us with Sjogren’s must have with us at all times, even if it is only water because, quite frankly, I’m sick of going to the hospital for not having enough of it in my system to keep me upright.
    So now, along with my water bottle, I also carry a doctor’s note everywhere I go explaining my need for water. Lots of water. It feels a bit childish yes, but it works. One day, I hope that those of us who depend so heavily on water, won’t need to produce notes or ID cards to prove we’re actually sick. I hope there will finally be enough awareness about this disease that we are accepted as we are.

For now though, I have a note...