Monday, January 30, 2017



Should You Push Through Or Should You Rest

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    In day to day life, everyone hits a point when they need decide whether to continue what they’re doing or to just stop. To be finished. To be talk to the hand, walk away and crawl into bed over it. We know that’s not possible all the time, but sometimes it’s really necessary for our health and our sanity. So how do we choose when to push ourselves to get stuff done and how do we know when to rest or just stop?
    And I truly mean this as a question as compared to most things I write. You know, the stuff giving away snippets of my wisdom as an (ahem) older (ahem) person who’s autoimmune. Nobody has all the answers and with autoimmune, everyone’s experience is so different it’s truly mind boggling. And our individual experiences change day to day as well, so it’s no wonder we are confused about what we go through. So I’m asking-how do we know when to push through and when not to?
    It would seem obvious to say stop when you get tired. Except I am always tired. I wasn’t like this just a few years back. Now I am. So, do I wash a dish and then sit? It will take an entire week to do a single load of dishes this way. And with four people in my house, I will have dishes on my floor before I finally get the dishwasher full.
    I used to stop when I got overheated. Now, I get overheated in my sleep. (though I might be teaching jazzercise in my dreams) I have fans in every room. Even bending over can cause me to sweat. So picking up dust bunnies has turned into an aerobic event that lasts all day. It’s like: “One and Breathe and Sit and Wipetheforehead and…”.
    Of course pain can also be a signal to stop. But honestly, I’ve been in pain for so long that I usually ignore it. Otherwise, step vacuuming would be a thing. I have very long arms so it would work like this: Step, Stretch, Vacuum back and forth, and Rest. I will have a clean carpet in 4 foot strips. Fortunately, I have area rugs so it’s more feasible than with full carpeting. Unfortunately, I tried this approach with a steam cleaner. Much more difficult. And wet. Really wet.
    A less common issue I’ve had is random trouble breathing. This is one of my more pressing signals not to push myself. But that’s been getting worse lately and more frequent too. I have recently been given an inhaler for when I exercise. So do I get to call house work exercise now? Like seriously, scrubbing stuff is really hard for me. Do I wear the inhaler around my neck or just create an inhale-o-mask to wear while cleaning the bathrooms? And the kitchen counters . Oh, and the stove. The fridge. Maybe the dog…
    And then there’s the fact that I just get really weak. Sometimes I even lose the feeling in my legs when I stand too long. Or for five minutes. Or when I cook. And I’m the queen of single pan quick meals. So my choices are to sit randomly during the ten minute prep time, or, more excitingly, finish prepping my meal and put it in the oven while feeling as if I have no legs and am floating around the kitchen like a ghost. (I admit that one is a bit cool).
    But back to the original question: When should we push through and when shouldn’t we? I have outlined that in my case, it can be done. But should it? I pushed through yesterday. I made my boys a home cooked breakfast, cleaned the kitchen, did some laundry, made the family an old recipe from my childhood for dinner, and cleaned out the filters for our water unit. I pushed. And because I pushed, today, I am paying for it. So should I have pushed? I guess only I can answer that. And it can only be answered at that time. Just as only you can answer for yourself at the time when you face such a situation. A situation when you must push through or sit.

    I still don’t know if did the right thing yesterday. And maybe that means I really did do too much.

Friday, January 27, 2017



My Disease Helped Me Find My Self Worth

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    I have been shy my entire life. Not just shy, but excessively so. I am uncomfortable in most social situations that involve talking. Especially large groups. Ironically, I earned my degree in Education and became quite good at presentations and trainings. But that’s not what this is about. This is about breaking out of my comfort zone, asking for help, and finding self worth.
    So why is asking for help out of my comfort zone? Well, a huge part of my shyness stems from the fact that I never had any self confidence. There’s a lot of back story there but I’ll leave that for now. Basically, growing up, I never felt I was good enough. And if I wasn’t good enough, whatever that meant, then why would I ask anyone for help? Because in my mind, who would want to help someone like me.
    I finished both high school and college feeling this way. I also fell in love and got married, still feeling this way deep inside. And then I got sick, which only served to further my feelings about my self worth. But, I had kids to raise so I did what I had to do. I was alone most of the time anyway. And when they went to school full time, I went to work helping children with developmental disabilities. And I loved it!
    But my disease had other ideas and I became progressively worse. Medicines made me gain weight. My disease attacked my lungs making it hard to breathe during flare ups. Joint pain made it hard to walk and reduced bone density eventually caused compression fractures in my back. To say depression is common in people like me is an understatement and I gave in to it, especially when I had to give up my job.
    My story could’ve ended there. Many peoples’ do. But I wasn’t happy. My kids were grown and working, my husband was working, and I wasn’t. I was at home without a car and in pain. I could either continue to sit there cleaning when I could and watching way too much TV, or I could figure out how to change and make things better. And for someone who spent their life thinking they were not good enough, choosing the latter was the hardest thing I ever did!
     But it is what I chose, and in a way that required me not only to ask for help, but to ask strangers!
     I contacted someone from highschool that had become a personal trainer and told him my story and asked if he would take me on. He did. I put out a post on my neighborhood community bulletin asking if people who lived near me would be willing to walk with me as I am still afraid of walking alone. I got 6 responses. And I put myself out there and took over menu planning and cooking. I can’t shop for a week’s worth of food, I can’t be on my feet that long. And I can’t cook complicated meals for the same reason, but the meals are now all homemade and healthy again. And shopping 2-3 times a week is exercise.
    I may not be able to stop my disease progress or end my pain. But I feel like I can be an agent of change in my own life now. That gives me a confidence I’ve never felt. And the fact that all these people are willing to help me when they don’t even know me makes me feel worth something. I know I won’t be able to work again but that doesn’t mean I can’t build a meaningful life. It will just be a different one.
    I guess you’re never too old to find your self worth after all...

Thursday, January 26, 2017



What I have Learned Since Being Granted SSDI

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    Last year, I wrote about what it was like to have to accept the fact that I am affected enough by my disease to have to apply for disability because I can no longer work. I was granted disability in October of 2015. Here are some things I have learned about being on disability since then  that I never knew.

  1. In certain circumstances, you have to pay taxes on your award. And they don’t really tell you this either. It all has to do with whether or not you are married and how much spouse earns. Chances are, if you are single and SSDI is your only source of income, you will not have to pay taxes, but I would look up the rules. I have 10% withheld automatically to offset what I may owe at the end of the year.
  2. You are eligible for Medicare after 2 years. BUT, that 2 years is calculated from your date of disability, not you date of decision. The difference is this: your date of decision is the date you get approved to receive SSDI. As I said earlier, I was approved in October of 2015. That is my date of decision. But, the SSA also has to determine when you became disabled enough to receive benefits according to your medical records. In my case, it was the day I first fractured my back, or July 22, 2014. So when I received my paperwork stating I was eligible for Medicare in July of 2016 (instead of October of this year like I assumed) I was a bit confused.
  3. You do not have to accept Medicare when it is offered. There is a lot of confusion around this. There is also a question about being fined if you refuse to sign up the first time Medicare is offered. Under Medicare statutes, you do get fined if you don’t sign up the first time it is offered to you-unless you meet certain requirements. One of which is being under age 65, disabled, and covered by a spouse’s insurance through an employer of over 100 employees. So you must be able to prove you are covered by acceptable health care insurance already. I am covered under my husband’s insurance so I was able to decline Medicare until I actually need it.  
  4. Do some research first. The above being said, there are actually insurance companies and businesses that will require you to take Medicare when you are first eligible. There may not be many, but they are out there, so it is very worth it to make that phone call rather than being found out and held responsible for all the payments your insurance agency made on your behalf before they found out your eligibility status.
  5. Don’t trust the SSA. In stating that, I actually mean make copies of the paperwork. Whether or not you accept or decline Medicare, make copies. And don’t lose them. I lost mine. And then the SSA lost my refusal postcard. So now I am enrolled and paying for a service I don’t want or need. I have to “Unenroll”. Which means I have to pay next month’s premium too. Something about 30 days from the month we’re in. Which automatically means anyone wishing to unenroll will be on the hook for paying the next month’s premium. And there are no refunds unless you can prove you refused it before they signed you up. Or-it’s your fault unless you can physically prove it’s their fault.
  6. Staying ‘healthy’ is a double edged sword. This is the hardest to explain. Since my disability determination lies in my fractured back (I’ve since fractured it a second time) mobility is a big issue for me. Walking is the only way to try to strengthen my back and keep me from losing so much muscle tone that I end up in a wheelchair-a possibility anyway due to my chronic diseases that were not considered in my disability case. But walking can also be counted against you in disability case reviews. So how do I explain that I walk but it still hurts? That I walk because I am terrified and I’d rather the pain of walking than the pain of another broken back? That I walk but I still cannot work?

    Well, these are the few insights I have gained in the last year and a half of being “in the system”. I’m sure I’ll learn a lot more. Maybe there will be a Part 2 to this article in the future!

*SSA - social security administration
*SSDI - social security disability insurance/income

Saturday, January 7, 2017



Why I Have A Voodoo Doll

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    In the world of autoimmune disease and chronic pain, there are obviously medications galore out there for us to try in an effort to manage the many symptoms we experience on a daily basis. This is especially true when it comes to pain management. What’s not as well known are all the alternative methods of symptom management available to us. And having been sick for going on 21 years now, I have tried most of them and even developed some of my own. The latter are the ones I’d like to share here. (Be forewarned, I’m a complete nutcase and no rational person would ever think of these techniques!)
    First, if you don’t have chronic pain, you may not realize that pain, especially chronic pain, can alter a person’s temperament. On good days, or even low to moderate pain days, we can be very pleasant. But shoot that pain level up past 6 or 7 and looking at us cross eyed might get you a front row seat to a volcanic eruption. It takes a lot of effort to mentally manage pain so there’s not much left in the tank to manage life with. And that fact frustrates us to no end. So, I came up with a few unorthodox techniques to manage that frustration, and in a way, to mentally manage pain as well.
    The first is based on the common relaxation technique called visualization. You know, close your eyes and visualize yourself in the most relaxing pace on earth. (Most people pick a beach…) That doesn’t do it for me. I mean sure, I relax, but afterwards the pain is still there. So I actively visualize fighting it. My disease becomes a monster living in my body that I have trapped in a box - not unlike a large treasure chest - with chains wrapped around it and padlocked. When it escapes, I hurt or I flare. So i visualize capturing it and locking it back up. It probably helps that I am a huge nerd and played Dungeons and Dragons in high school before it was actually cool to do so and can wield a broadsword and dual fencing foils in a dress. (These facts just add to my imaginary adventures.) But seriously, I feel more powerful and active against what is going on inside my body by doing this. And it’s fun! So win-win right?
    Next is a technique based on how kids are taught how to manage their frustrations about the way the world works and dealing with others. (Because children are SO good at talking stuff out…) And having raised two highly active boys, I was all about reducing the pushing and shoving, especially at the top of the stairs. There’s a common school of thought out there that recommends teaching them to take out their anger on a pillow. Because pummelling your brother is not acceptable. No really. It just isn’t. Those of us experiencing chronic pain get frustrated and angry too, but that frustration is unfortunately directed at our own bodies. And let’s face it, we’re not going to smack ourselves. So, I have a freaky blue stuffed mouse thing that I throw around sometimes. Or usually just pelt a pillow with. I know it sounds violent, but the sheer release and energy of it actually very cathartic.
    My last unorthodox technique is referenced in the title. Don’t be put off by the idea of it please. Yes, I have created a pain relief voodoo doll. Let me explain: The idea behind real voodoo dolls is both religious and magic in nature. The psychological theory is that they work because people believe they will. The power of the mind is awesome. So why not try to harness it for our body’s good? A few years back, there was a popular toy out called The Ugly Doll. To me, they looked like what I pictured the actual cells of my disease would look like. So I bought one. And then I got to thinking. So I made a bunch of long pins. My idea being to lessen my pain by “transferring” it, to a comparable area on the doll using mind and the very concrete action of sticking a pin in that area. Sometimes, a concrete action such as this is extremely helpful when the only real answer is mental control. And sometimes, it's just fun to stick pins in something. (Especially this because it doesn’t resemble any human or animal on the face of the earth at all!) It really is like sticking it to my disease-pun intended!
    So here are my top three, totally wacky, unorthodox ways of approaching chronic pain management. I also do the normal stuff like heat, cold, or compression. I even do mid level stuff like creating my own rice filled weighted teddy bears for headaches and carrying palm sized stuffed toys I call pain squeezies to squeeze when sudden pain pops up. But by and large, I have found attitude helps more than anything else when managing pain. And you gotta admit, these techniques take attitude! And are funny. And laughing helps EVERTHING-right?