Friday, October 17, 2014

Bringing my posts into one place

I have finally had to admit that I'm wearing too many hats. By trying to bring targeted content to specific patient groups, my brain has gone into permanent tilt mode. I have decided to simplify my life (and perhaps yours) by creating a new blog that reflects the ever-changing landscape so often seen with chronic illness.

Welcome to the Chronic Adventures of Kristinaland


I will no longer be posting to this blog, Joy... bite-sized or Conquerors through Christ. I will, however, leave them open in the event you want to bookmark any links I've referenced. There are many as I always make sure I do my research and/or share interesting links that come my way. Rest assured that I will not close down these blogs without giving you ample warning.

Does this mean that my content will radically change? NO! It just means it will all be in one place. I will still post fun little snippets that I used to post in Joy... bite-sized. My faith continues to play a vital role and will come through in most of my posts, just as it did in Conquerors through Christ. If you want to find my posts on Google+, they will continue to show up on my Chronic Pain Heroes Google+ page.

What IS changing

I am closing my Chronic Pain Heroes Google+ community as I'm simply no longer capable of managing it. I have not made this decision lightly; however, my health has made it necessary.

Please let me know if you have any questions.

Yours in health,

Kristina


Tuesday, September 9, 2014

Learning a better way

I can't believe how long it's been since I posted anything here. Before I start feeling guilty, useless or any other negative emotion, I simply admit that such is the nature of the ME-CFS beast. We get slammed, and we are down for the count until our illness says otherwise. End of story. Or is it?

Don't give up!

There is a strong temptation to chalk up new symptoms to this crazy illness rather than see our doctors. Why? Because we know what to expect when we report yet another debilitating symptom that no one can test for, let alone see. I have been patronized, judged, accused, refused treatment... the list goes on and on, as I'm sure yours does too. Learning to live with our bodies is no minor accomplishment. It's learning to stay in the game, without collateral damage on both sides, that's the tricky part.

The right way to fight

I have to admit that I'm still learning how to do this. My last visit to the ER was truly traumatizing. I was covered in hives, I felt like my brain was on fire, and that my heart was going to explode. I felt so profoundly unwell, yet this doctor just kept saying "I don't see anything wrong". Then, without skipping a beat, he said "Well, I can't give you any more pain medication"... sigh.

I never asked for any!!!!!

OK, deep breaths...
I grow so weary of doctors who refuse to hear me, or who can't be bothered to connect the dots of this maddening illness. However, am I expecting or even demanding something that simply doesn't exist? There is no cure for ME-CFS. Most doctors have not read the research, which continues to grow. Bottom line is, the more upset I get at a system that doesn't know what to do with me anyway, the worse I will get - period.

Is that what I want? Is that what YOU want??


It is possible to learn how to manage ME-CFS. It's not a quick fix, but you can learn skills that will make a difference long-term. I highly recommend the CFIDS & Fibromyalgia Self-Help program. You get to meet other patients, plus the course is led by patients who have successfully completed the course themselves. They have walked the walk. 
 


I also began reading Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses by Dr. Katrina Berne. She has the unique perspective of being a doctor and a patient. Yet, even with her credentials, she writes about the less than stellar treatment she has endured from the medical community. In a way, I found it quite validating to see that it wasn't just me going through this. Her book also contains lots of self-management strategies, which I look forward to reading. Again, if she can do it, then so can we!



 
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Are you helping or hurting your cause and your health? Do you tend to get defensive and upset when people treat you unfairly? It's a natural response BUT would you be willing to learn how to approach these situations in a way that doesn't set you back for weeks, even months, at a time? You can go from victim to advocate. Yes, you can advocate for yourself! Are you willing to begin taking baby steps with me? 

A wise man is strong and is better than a strong man, and a man of knowledge increases and strengthens his power          Proverbs 24:5

Friday, May 9, 2014

Where did my brain go??

This post is being done from my phone so please excuse any boring formatting issues. I just didn't feel like this could wait until Monday. What transpired today defies all logic!

As you may know, cognitive dysfunction is fairly common with ME-CFS and Fibromyalgia. To call it "brain fog" is like calling Mt. Rushmore a bump in the road! OK, perhaps I am exaggerating a bit, but you get my point.

I used to be VERY organized. I never needed lists and Smart phones with all their great reminders were nonexistent (almost like dinosaurs). What happened to me today was sitcom worthy. Here is the list of everything I forgot to pack:

- toothpaste
- mouth guard
- ibuprofen
- Robax
- Tiger Balm
- prescription sleeping pills

I did make sure to pack jewelry and makeup... (sigh)

The things that didn't make it into my bag weren't kind-of-nice-to-have things. They were things that I can't do without - period! So my poor hubby, after driving for almost three hours, had to go back out and hunt these items down.

Needless to say I have learned my lesson. I will NEVER pack without making a list first - AND I will USE IT!!!

Do you have any funny/ridiculous stories that you would be willing to share? While cognitive dysfunction is no laughing matter, those of us affected can at least keep our sense of humor about it.

Happy Mother's Day!

Thursday, May 8, 2014

Fear of living

We are driving three hours tomorrow to visit with family for the week-end. Not only that, but while we are in town, we will do even more driving and socializing so that we can see our kids and other family. I was having a couple of pretty good days when I got the bright idea for this roadtrip. Now, I can barely get out of bed, my pain is through the roof, and I even have new symptoms I'm trying to manage.

Fight or flight

Those of us living with chronic illnesses understand the damage of this most basic function. We have been blessed with the ability to gain super-human strength for those occasional times in life when we threatened. The problem with many chronic illnesses is that we get stuck in fight or flight mode. Being continually stressed, whether it's from daily life or chronic illness, is pure poison for our bodies! So what's the answer?

Stress - Reality or perception?

Does it matter?? It's all about perception because if you believe you can't manage a situation then you will feel stressed.

I used to thrive on stress at work. Why? Because I felt I was: a) capable of handling it, and b) I felt in control of it. However, as life went on, other stress factors pushed me into a constant state of negative stress. Add severe chronic illness to the mix and my body simply could no longer cope. I recognize that my ability to manage stress is vitally important to my health. I can also see how chronic illness made this almost impossible. Why? Chronic health conditions can themselves make it more difficult for us to manage stress! When you see the rates of depression with various illnesses, you see just how big a problem this is. It is important to also note that depression can be a symptom, not just an effect. For example, one of the symptoms of hypothyroidism is depression.

Now what?

My biggest hurdle right now is that I know what happens when I push my body to do more than it can handle. I have a history of cause and effect, and to ignore that and push blindly on is foolish. So, now I have to learn how to mitigate the added stress on my body. Some of the things I will be doing:
  1. Wear dark sunglasses or even a sleep mask for the drive down.
  2. Increase my pain medications slightly - This will help ensure that the vibration from the road don't trigger a flareup (it sounds weird, but it has happened). **do not exceed your prescription limitations**
  3. Refrain from conversation - This one is particularly difficult for me as I love chatting with my hubby on roadtrips.
  4. Lie down in a dark room for at least 30 minutes after we arrive - Again, particularly difficult for me as I want to visit with everyone.
  5. Spend as much time on a couch as possible - Thankfully our family understands my weird health needs and are more than happy to accommodate.
  6. Talk less, listen more (see #3).
  7. Take lots of rest breaks - This is where my walker becomes invaluable as I can stop and sit down anywhere I am.
  8. Breathe - Have you ever noticed your breathing? I know that when I'm in the middle of a flareup, my breathing gets very shallow. This only makes the stressful event even worse! Take slow deep breaths, focus on things that bring you peace and joy, believe that you will get through this moment in time.
  9. Pray and ask for prayer - I have many people praying for me. My hubby and another friend of mine are incredible prayer warriors. I turn to them during times of intense pain/fatigue; times when I just don't feel capable of praying for myself. It helps every time! 

Where to go for help


Talk to your doctor, find a therapist, read books, meditate, look for joy in the smallest of things! Do things that make you feel better and stay away from things that don't! I know this sounds overly simplistic, or even impossible. We can't always stop doing things that stress us out - that is why we must learn how to manage the stress in our lives.

I know I will survive this trip. I just need to honor my body's needs instead of blatantly ignoring them. There's a lesson in there.

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How does stress affect your health? How do you manage the stressful times in your life? What can you add to my roadtrip list?

2 Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith develops perseverance. 4 Perseverance must finish its work so that you may be mature and complete, not lacking anything.   James 1:2-4