Tips for living with pain…

Oh great.  Here is yet another blog article trying to tell me how to live with pain.  What does this writer know?  This writer lives with 6 invisible diseases…and all of them have caused pain.  Hereditary Hemochromatosis (iron overload), Porphyria Cutanea Tarda (sensitivity to light, skin blisters), Hashimoto’s Thyroid (autoimmune…caused extreme stomach issues), Epstein-Barr Virus (felt entire vertebral column flare-up), Depression from pain, and Fribromyalgia (when anyone touched my skin, it felt like a slap).

Over the last three years, the pain continued to get worse.  I opted not to be on the pharmaceutical drugs due to the fact that HH is a genetic condition and no doctor could tell me for sure if the drugs would make my liver worse.  So pain it was.  But I wasn’t going to stop there.  I continued my search for things to help me cope that were going to work with my body naturally.  What did I find?

  1. Turmeric milk.  Turmeric has been used in India for thousands of years for its anti-inflammatory properties…due to the active compound curcumin.
  2. Relief.  Building on that, I take this product because it has ingredients such as glucosamine and chondroitin, but even more than that it also includes turmeric root extract, as well as yucca root, which has long been used for osteoarthritis as well as inflammation of the intestine.  Ah-ha.  Hmm.  Remember my stomach pain before?  Better within weeks of getting on this.
  3. Restorative yoga.  Yoga has been shown to decrease the stress hormone cortisol.  Do you think I might have been stressed when I moved if my whole body felt like it was on fire?  Yes.  Just a little.  The difference in restorative though, is that you get to use comfy bolsters, blocks and blankets.  So we made little nests, and sat in that pose for 5-15 minutes depending on what it was.  I had a hard time at first, but learned to let go of my expectations of what my body used to be able to do.  The poses became second nature.
  4. Vinyasa yoga for back pain.  I graduated to Vinyasa…honestly, only because a friend pulled me in the direction my mind was afraid to go.  When she suggested restorative, I gave it a try.  When she said that I could do Vinyasa and possibly teach one day, my mind shut her down due to the pain.  “She has no idea how much moving hurts.”  Said the mind…but the heart wanted to get better.  Thankfully, it’s pretty strong, and said “Let’s do this thing!!!”  And so I did.  Almost 200 hours later…the girl on fire.  Literally.
  5. Meditation-like thoughts.  When I felt myself go into the dark place of pain, I would literally stop and say things to myself like “I am breathing in.  I am breathing out.”  I didn’t come up with this on my own.  I read part of a Thich Nhat Hanh’s You are Here, except at the time, I didn’t want to be there.  ha.  So I never finished it.  But it did teach me to focus my breathing.
  6. Friends checking in on you.  This part became difficult.  Not many people were in this category.  When you are in pain, people slip away.  They do.  It’s not their fault, but it is in the human nature to be uncomfortable when you don’t know what to do.  Most don’t climb down in the hole with you.  Watch this short video to get the full meaning of “The Power of Empathy”.  Rarely can a response make something better, says Dr. Brown, what makes something better is a connection.

So my friends, I leave you with my connection to you.  I am in the hole with you.  I have climbed down there.  I will hug you.  I will give you that love and connection to your pain, but the next step is on you.

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Motivational Monday…for the UNbroken

Hey friends…you know how last week on the Facebook fan page for my blog, I asked you a question?  I asked you to tell me what kind of “invisible disease” you had.  Many times, we feel so alone with these diseases, because they are in fact, not visible to people looking in at our lives.  But this statistic came from the link I posted: 96% of people with chronic medical conditions live with an illness that is invisible. 

I don’t really think we are alone.  So let’s say you didn’t get your disability and you have 5, maybe 6 illnesses on that list.  Guess what?  It happens.  I decided it meant something different.  I decided it meant that I was supposed to find a flexible job working from home and helping others.  Don’t be discouraged.  You have a few options.  You can continue the fight without a lawyer.  I have been told that’s why I never got anywhere.  You can get a lawyer.  Or you can move on.  Moving on is not giving up.  I just want to give you permission in case you needed to hear that.  I know all the excuses in your head.  I know all the what ifs.  But do not stay in that place of despair.  Make a plan.  Work on it.  Move on.

So now I am in yoga teacher training, and it’s hard.  Very, very hard emotionally and physically.  I doubt my path at times.  I do.  But as my friend said yesterday, okay really paraphrasing, if we didn’t have emotions or feelings we’d be like Data from Star Trek.  He was an android who was unable to feel emotion or understand certain human responses.  We don’t want to live like that.  So acknowledge the feelings you are having, and work the plan.  Whatever the plan is.  If you don’t have plan, write something down.  Just a few things.  It can be as simple as get out of bed, and get dressed.  Get to the store today.  Fibro friends, this is an important plan.  You know this.  Get out of your pajamas…says the blogger still in pajamas.  But you know what I’m talking about!!!  You do.

Next on your list, make a new friend.  Okay, this one is hard.  Why is this hard?  It is hard for people who feel alone, because opening ourselves up and getting vulnerable with new people is like going to a new doctor for us.  We hate having to start at the beginning and tell our story.  I know this.  You know this.  Stop ignoring this one.  So here’s how you can go about doing this.  Re-evaluate who is in your life right now.  Who checks in on you…who checked out on you.  Those people who checked out of your life during your hardest times, they have left you space for new people.  I know it sucks, believe me I do.  But it’s time to be honest.  Those people didn’t understand anyway.

So start a new practice.  Get your list out.  What did you like to do before all the bumps?  For me, I already liked yoga, so I looked into restorative, which was low-key.  I researched other types of exercises for fibromyalgia, and decided I didn’t feel like going to water aerobics, but if you like that, put that down.  if you liked gardening put it down.  Don’t think about the pain, I know you automatically went to “I can’t get down there and bend.” Stop.  So here’s a neat idea, look up community free classes or workshops in your area.  You can also container garden and not have to bend.  See how I did that?  Put it at eye level.  Flower arranging?  Do it.  Whatever it is that old you did, write it down.

So guess what’s going to happen during this process of thinking about other things that you now have room for in your life…you are going to make new friends.  You are going to feel better, and you are going to feel less alone.  Anytime you have a negative thought, push it away and back to the things you are doing that are positive.  That are a step in the right direction.  So when you get that letter in the mail from social security…don’t be afraid to open it.  Make a plan.

broken

The yo-yo mood…

So it just takes one thing…just one for me to start my yo-yo mood.  The other day, I was doing whatever random things I do on the computer.  Mostly making quotes for a few pages I run, and a friend sent me this article in a message called It’s Not Fibromyalgia.  I read her message and was surprised that she too suffered…but when I started reading this post, my head went to the place it goes to when people write about their experiences.  It kind of goes like this when people talk about how bad it is living with pain…I hear you sister.  I understand this.  It sucks, but damn this is depressing to read in someone’s voice other than my own.  Do I sound like this?  Crap. This is messed up.  Sigh.  More depressing things I have been through.  I could be her…she could be me.  Wait.  Wait a minute.  She just said something I need to hear.  Someone actually listened to her.  Hold on and back up to that part because the rest is the same as my life.  Except this part.  This part where she finds HOPE. 

So I get to the symptoms, you know the part where invisible diseases can’t be seen except for the fact that I have lots of those symptoms…and doctors don’t really know what to do…so I kind of stopped talking to them about what’s going on.  And I get to the part where she prayed she had this thing because it actually explains something.  Black mold.  Wow.  Who knew?  Well, obviously someone did, but not anyone else most of us have ever come across in our long line of 18 different specialists.  So I messaged my one advocate in this fight…Dr. Marion who I have written about.  And she says yes.  Yes we can do this test.

For those of you who might be new, I gave up on regular doctors after getting diagnosed with fibromyalgia by a man who was a nervous wreck and a top rheumatologist in the area.  He said he understood why I wouldn’t want to be on pharmaceuticals given the side effects of the “medicines” and the possibility of a liver compromise with hereditary hemochromatosis (see my tab at the top about that genetic disorder).  Not to mention the other possible complications with those “drugs”.  I decided to go all-natural using plant based phytotherapy (see my tab Vitalize You at the top).  So that brings me to where I am.  No doctors listen to my intuition.  None.  I know for a fact that something deep down has made so many things spin off…and it’s only a matter of time before we find the link.  So if this isn’t it…we keep going.  But it’s one more thing to cross off.  I will let you know what happens.

Difficult times

Hello new friends…

Hi friends, if you are new over here and want to read my story, you can use the side button to go all the way to some of my first posts.  If you want to really “hear” my story, the recording of the Talk Radio Blog show is on the post before this one.  It’s your choice.  I know it sounds long, but I talk about invisible diseases as pertain to me, so it might be interesting to you.  Lastly, I use a method of clean eating…no processed foods, no fast food, not white sugar, no flour, etc.  And supplements to stay healthy.  See the tab on the blog here called Vitalize You and it basically tells you just a few of the products I use.  I opted not to be on Lyrica or Cymbalta due to my research.

Next up, I will be extremely busy with my new yoga teacher training classes and more to come on that I’m sure.  I am using these methods instead of “traditional” and so far I have lost 18 pounds and gone down 3 sizes just from getting rid of the toxins that my body was reacting to with autoimmune.  I have gotten rid of the bloat and the IBS symptoms I used to experience from food “attacking” me.  I still have my bad days…as does everyone, but I am making progress.

Feel free to message my FB page Vitalize You with supplement/weight loss questions.

aspire

Wellness is near…

I am happy to be part of The Wellness Universe directory which is launching tomorrow at 11:11a.m.  Both my blog here and my page Vitalize You are members!  I have come a long way in a year, but I am not done yet.  Wellness is an entire process.  Spiritual, Social, Physical, Occupational, Environmental, Intellectual, and especially Emotional all fall under our wellness directory.  You might just recognize a blog writer!!  I am passionate about changing my life.  I have changed my body by finding my triggers and I am great with working with others who have autoimmune issues…the problem is, they really have to want to change as well.  Things that are worth doing are sometimes not easy…I know that.  But if you read all of my history you will realize that if I can do this as bad off as I was, you can do this too!!

Whew…get ready.  Me_1_yearIf you are bloated, in pain, have fibromyalgia, autoimmune, hashimoto’s thyroid or anything similar, consider talking to me through my Vitalize You page.  I am here to help.  I have recipes on Pinterest, and plans that can actually help you begin to make the changes on your path to wellness.  Just let me know!  Happy to be part of the launch tomorrow!!

wellness

Help yourself…

I was going to call this Motivational Monday…but I want you to know exactly what I am writing about.  I don’t want to mislead you as I might sound a bit harsh for a minute.  You need this.  I need this.  We need this.  So ahem, put on your big girl or boy pants for a minute and take a seat.

Sometimes people ask me for advice…and likewise, I ask others for advice occasionally.  The problem is, we aren’t really asking them for help.  We are merely wanting to let them know how crappy our lives are at the moment.  How horrible X, Y, and that Z is.  We let whatever their situation is get into our heads sometimes.  We should definitely NOT do that, but as good friends, maybe even best friends, we do.  It sinks into our souls like an anchor and there it lies.  It has extra weight that we carry around for who knows how long.  It might even take up space in our very valuable brain…space we scarce have left for our own issues let alone others.

So this is what I propose we all do before we ask for advice.  We think long and hard about our situation and if the situation can be improved and/or fixed by actually doing something instead of talking about it.  If the answer is yes, then write out a plan.  If you don’t think you can fix it yourself, and you really do require advice or help, then by all means, ask away.  But be prepared to actually use the advice others dispense.  Now before anyone reads into this, this is always purely written for me.  I am giving myself advice today.  Right now.

My good friend Dr. Marion gave me three questions to ponder over when I get asked for health advice from others.  The first is “What do you expect from me?”…maybe to clear up goals the other person wants for themselves.  The next is “What is your ideal lifestyle?”  She used this one on me a while back when working on my mobility at her office.  I thought about that for a while.  It sounds easy, but I really want you to think about it as it relates to your health.  Lastly was “How do you expect to get there?”  Of course I said magic wand…then I added that’s where she comes in.  She gets my humor.  But it’s hard working with her sometimes so I avoid it occasionally as that’s what we all do if we don’t like pain.  Likewise, we avoid listening to or taking the advice of others because it might cause us pain or difficulty.  We want the easy way out.  We do.

The difference is I know this and I still have a block.  I told her that today.  The hard things are just HARD to do.  I’m so damn tired of hard.  I don’t see myself as some of my friends do because I know what’s in my head.  I know how close I have come to not trying anymore.  Not giving up…just not trying.  But my friend told me I was so motivated it’s scary today.  And Marion told me to just stop “leading” and let her help me.  Because that’s what I do.  I look for answers, I don’t stop and rest too long or I’ll stay there, and I keep leading.  I will succeed in my goal of coming back into my body at full capacity.  I will not let these labels, these ridiculous, stupid labels, stop me from living.  If you are tired of living with a label and you are asking for advice, please do yourself a favor and HELP YOURSELF.  You are the lead in your life.  You are.  But when you ask for advice, if you truly need help, then take it.  And that my friends is my lesson for today.

Help yourself

Author’s note:  Dr. Marion gave me this listing for everyone needing to find your own AK practitioner.

Here’s to you…

New youHey there friends.  I’d like your help.  We are working on a way to change ourselves.  Really and truly in the New Year.  Not resolutions that can be broken, but a plan.  A real plan.  On my Facebook page for the blog I am making a few posters about ways to help yourself, but I want you to sit quietly and think about all the ways you are blocking yourself from your greatest potential.  Whether it is weight loss, healthy eating, negative thinking, depression and/or anxiety, excuses for why you don’t leave the house, excuses for why you don’t exercise, well you name it, you and only you know how to change yourself.  The fact is, we can go to all the therapists in the world, but until we are ready to make that change, that commitment, we are simply going to continue hoping what they tell us will work one day.

Wake up and open the curtains.  Remember my last post about getting more light?  Hint, you had to watch the video I posted.  Clean your room and get rid of anything you are not using.  It makes you feel better.  I don’t know why or how, but it does.  Make ROOM in your life for things you need.  You are getting rid of things you no longer need in your life.  I guess it could be the symbolism, but it really does work.  Fluff your comforter, change your sheets.  Go to bed earlier.  I personally know how hard this one is.  I am erm a night owl.  Nevertheless, I am going to be shutting down 30 minutes earlier and working on a new routine.

Get your refrigerator ready for good food.  Throw out the Christmas fruitcake…no not your relatives, the sweets you still have.  Wash and prep veggies for the week.  Make your list of smoothie items or simply use these greens I use everyday.  I use berry but you can try orange or whatever you like.  It actually is cheaper than buying all the veggies to throw in the blender.  I also take my supplements for my pain and drink turmeric milk or tea.  I immediately change my thinking even if I am in pain to thinking that the tea or whatever I am using is helping me.  It really is helping but I try hard not to concentrate on what is wrong.  I work daily at this.  Do NOT dwell in the negatives.  Let the negative thoughts pass by, but don’t stay there.

My Facebook business page Vitalize You is working on a plan to help my customers, so if you are interested, feel free to PM the page.  I am also working on a yoga plan as well as a getting out of the house more plan.  This is very important if you have fibromyalgia and tend to sit too much.  Stop dwelling.  Just stop.  Make a plan.  If I can do it, you can too.  So let’s go.  2015.  It’s almost here.  Move more.  Eat better.  Do good things.  No resolutions you won’t keep, but goals.  Gather your supplies, your buddies, if you don’t have buddies, get out of the house and make some.  NO excuses!  Ok, pep talk over…and today wasn’t even Motivational Monday.