Monday, May 22, 2017



5 Reminders Of The Not So Helpful Support
Of Support Groups

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     Support groups can be really helpful when you have an issue you’ve never experienced before or you feel like no one around you understands what you’re going through because it’s just not that common! Support groups are also a great place to get tips for ways to talk to your doctors, alleviate side effects, and reduce pain because we can’t always think of everything ourselves. But it’s this wide open field of info sharing that can also be dangerous if you’re not careful. Here’s my point:
  1. There are millions of us out there living with chronic illnesses and chronic pain.
  2. There are new discoveries every day about the health benefits of this fruit or that vegetable.
  3. There are millions of people out there who want to make a quick buck.  
Personally, I see a perfect storm of get rich quick schemes targeting the chronically ill with products that will “heal” them or “eliminate” their pain. And they seem to pop up all over support group sites.Because that is where we are at our most vulnerable. We expect everyone to be truthful. We expect them to have our best interests at heart. And we expect them to be as caring as we are.
    But remember, these diseases are all different, they act differently on each body, and not everyone cares about everyone else. So here are a few things to think about.

  • Herbs are Unregulated. There are currently no standards for the amount of active ingredients in herbs that you buy anywhere. How they are prepared can result in higher concentrations within the same company. What helps you 5’11” friend can put your 5’ butt in the ED. Also, our American culture isn’t used to many of these remedies. Some recommended amounts that are harmless in other countries can really hurt someone here. Then there’s the fact that many herbals increase the effect of medications many of us currently take acting as if we took double or triple the dose. (Ie: St John’s Wort with Antidepressants) This can and has caused death. Consult your doctor and a nutritionist before adding that herb that cured Jane on Facebook. Please.
  • Vitamins are NOT More Equals Better. We now live in a society where we probably do not get enough vitamins from our food unless we are eating very carefully so the need for vitamin supplements is understandable, but just because extra Vitamin D is recommended for bone health, especially in cloudy climates, more can actually be toxic. The same goes for many minerals that are necessary for our health such as potassium. Necessary for our hearts and electrolyte balance, potassium toxicity mimics many symptoms of neuropathy we all struggle with. Any “cure” that recommends MEGA anything should be seriously questioned unless highly supervised by a professional. (Not just the author of a book who claims he’s/she’s one.)
  • Over The Counter Medications Have Specific Uses. Seriously. Read the package. Yes, they occasionally have alternative uses that have been figured out and are doctor approved. Benadryl is commonly recommended for short term use if you’re having trouble sleeping. BUT, by and large, the OTC medications out there are not meant to be used long term, in large doses, for off label uses. In other words, your run of the mill decongestant is not suddenly the cure for your Fibromyalgia and you should not start taking it daily against package directions without talking to a physician. One common decongestant, Mucinex, actually interacts with antidepressants classified as MAOIs and can cause real problems if not monitored by a doctor. (Even if Betty says she’s fine.)
  • Exercise Builds Up not Down. Many of us find it hard to exercise due to severe pain and exhaustion. Still, it is good to keep us mobile and flexible. But if a trainer promises you a cure by pushing you beyond your limits to reteach your body, it can result in much more harm by triggering flare ups and injuries due to all the extra swelling our bodies are prone to. There is no break down to build up in our world. Physicality is fine, but we need to protect ourselves from going too far. “Cures” that do not take that into account do not understand the illness they are trying to address.
  • There IS Such A Thing As Too Much Water. OK. As a Sjogren’s sufferer who drinks water all the time, this is tough to say. But it needs to be said. Yes, you can drink too much water and it can kill you. It’s called hyponatremia. Basically, you inundate your body with so much water, your cells flood due to abnormally low sodium levels. So, yes you need to drink. Most Americans do not drink enough. But be careful how you do it.

I know it sucks that there is no cure for what we have. It sucks that our bodies attack our own cells. And it sucks that people would take advantage of all this, and us, to make money. Just remember that if something seems too good to be true, it probably is, and extremes are a sure way even more hurt. But, we are strong in our circumstance and, ironically, we are always here for each other.

Saturday, May 20, 2017



So, What Do I DO ??

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        Recently, I noticed that when these stories get published on The Mighty pages, there are comments that we, as authors, can see. (I know, right? You’d think I’d have looked for that immediately!)  In response to an essay I wrote about things I don’t admit on my bad days (https://themighty.com/2017/02/bad-pain-day-struggles/) someone left a response that I hadn’t previously thought about.
    
    Basically, I was asked what can someone do to support a person dealing with chronic pain.  
    
    Seriously. And in thinking about it, I realized it’s something I’ve never been asked before. After 21 years of being chronically ill within a marriage, what I came up with surprised even me.

  1. Give Me Space.  I know that doesn’t sound helpful, but sometimes it’s exactly what I need. This disease is relentless. And it’s progressive. Which means that every time I think I come to terms with it and how I am feeling, it changes and I have new stuff to deal with. It makes me angry and it makes me cry and sometimes I don’t even know how to help myself so I definately don’t know how you can help.

2. Give Me A Hug. Yeah, coming right ‘after give me space’ this makes no sense
whatsoever. BUT… a hug can go a long way. You see, I get that you want to help
me and I get that you don’t want to see me in pain. Hell, I see the pain in your
eyes when you look at me this way and all I want to do is make it go away and I
can’t, so how can you? And we both know words don’t help when I’m like this.
But a gentle hug says so much more than any words ever could.

     3. Get The Kids On Board. OK. So this is a tough one if not impossible, but I’m
          going to say it. Most of us with Chronic Illnesses are women, so I am addressing
          this as a mom. I just physically cannot do the stuff I used to. Some days, just
          vacuuming is an issue. So any day you can get the kids out of my hair is a
blessing. Be creative and make up quiet games or get them to help make dinner
          or clean up. If they’re older-like my actual children-remind them that I seriously
          can’t carry their laundry up the stairs and lizards can survive on one day of no
food if I forget to feed them because you work out of town and… I’ll stop here. And ladies-don’t expect perfection if your guy is helping out here. There is none in the world of children or chronic pain. He’s trying.

  4. Help Me Find My Bliss. Going philosophical here, but it’s not as highbrow as it
      seems. Just talk to me about my pain. Talk to me about what I need in reference
          to my pain. The sweetest thing my husband ever did for me was to purchase a
          personal TENS unit (Electrical muscle stimulation) to help relax my muscles. I  
          love it! (That and the nightly backrubs when I was overexerting myself caring for
          my  mom) Find out what works and buy it, do it, commit to it. It’s hard and  
          disappointing when I’m alone in trying to make a change that I know will help
  reduce my pain.

5. Talk With Me. Ask me how I’m doing. And listen to my answer. Then ask me
     how I’m REALLY doing because you know I lied to you when I said I’m ok the
     first time. I know you’re tired too. And I know you work hard. You may be the
     only one actually holding down a job. I don’t want to add to your stress. Talking
     with me lets me know you want to know what I’m going through even though
     you can’t fix it. And also know I don’t expect answers. Maybe just a hug...

6. Appreciate Me. Understand that the things I mentioned in the beginning are
    always true. And it affects me mentally. I feel like a burden more than you will
    ever know. Becoming chronically ill, autoimmune, disabled, a pain patient, any
    or all of the above while in a loving relationship changes everything. I know it’s
    not what you signed on for no matter what you say. Those little romantic
    gestures other women are so nonchalant about can change my whole week.


But the most important advice I can give is to go with your gut! Go with Love. It always works!

Wednesday, May 17, 2017



Disappointment In Chronic Illness

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   Chronic illness is defined as being long lasting, over time, consistent. For those of us with Autoimmune illnesses that are chronic, that definition includes incurable and unpredictable. This means that we are always sick, but the symptoms come and go. One day our disease may be manageable, or asleep, and the next it may be out full force. We never know from one day to the next how we are going to feel and this makes it very hard to make plans in advance much less to keep them consistently. For the chronically ill, this is our biggest disappointment.
    By way of example, I can tell you my story. You see, I have been chronically ill for 21 years. (Don’t worry-this isn’t a 21 year history!) The treatments for my illness caused weakness in my bones and I sustained 2 fractured vertebrae in 2014 and 2015. In november of 2016, my disease came out of remission and has only recently become manageable again. So basically, I have been struggling since August of 2014 to be pain free and as active as possible. That’s enough of a history I think though a few more details will be coming.
    So, because of all this, and the fact that I don’t want to become a sedentary person until my disease makes it a necessity, I decided to find some challenges in my life. I started small. I invested in the ability to research my family history. Challenging my brain is huge on days when I can’t be up and around. And I really don’t want to find out if there is truth to the saying “use it or lose it”. I also found a volunteer position that I am physically able to do: I help at a an animal rescue center. I work with cats and kittens as I’m not strong enough to deal with the dogs. At adoption events, my job is literally to cuddle frightened kittens! Seriously! I know right?! That takes care of mental exercise and feeling needed. On to point of this story.
    The color run. Or for me, the color walk. It’s a 5k (3.2mi) event with lots of brightly colored powder and unicorns. Apparently. I’m not sure where the unicorns come into play, but I’ve heard them mentioned. Anyway, a friend of mine sent me an invite to sign up on her team. And I did. Spur of the moment. I’m not even sure why as I don’t think I’ve walked more than a mile since my injuries. But sometimes, I think we all get sick of being sick. Yes, it’s part of who we are now and we all know the idea of not letting it define us, but the reality is it’s always there. And I don’t want it to be. So I signed up to WALK. Something I should literally be able to do.
    The problem, I can never be sure I will actually be able to do anything. Even walk. And the weather where I live decided not to cooperate enough for me to get outside to practice. I walked indoors whenever I could but I didn’t know how far I was going. And to be honest, I didn’t feel the support I wanted to from my family. I get that they were concerned for my health, but I really wanted to do this. As afraid as I was of not being able to complete the entire walk, I really wanted to try. I prepared for the back pain, the migraines, the dehydration, the sun exposure, the swelling, the joint pain, the breathing issues-all effects of my autoimmune disease. The one thing I didn’t prepare for was the thing I should have seen coming. I came out.
    Yup. I got sick. I am writing this with a fever, stuffed up unable to breathe, swollen, joints hurting, and weaker than weak. Two days to go before the walk and counting on an immune system that would rather fight my cheeks than an evil virus. And it's not just the virus. My disease is out too as is common when we get sick. And I’m disappointed. It seems I’m always disappointed. I want to participate but I can’t count the number of times this has happened.
    Of course I go on. We all go on. We have to. But to say we don’t get disappointed is an understatement. Sometimes we get downright depressed. Sometimes all we want is to be able to live like we used to, making plans and keeping them. Doing all the things we want to do because we want to, when we want to, where we want to, and in whatever weather is out there without a bag of medicine.
                          Oh, and without being afraid of people sneezing on us…

                          Now will someone please explain the unicorns to me??