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

Talk Radio…

So this week has been interesting with the launch of The Wellness Universe website…being asked to write for all kinds of different pages.  And getting a phone call that shall remain a mystery for now.  But this, this is not going to be kept a secret…

Authoress Tonya Wilson of “The Time Is Now” sheds light Issues Of Addictions, Recovery & Deliverance. On Sunday, January 25, 2015 @ 7:00 PM EST. If You Need Inspiration, Answers, or Support, The Time Is Now! Her Guest Panelist This week is, AIMEE H….Aimee H. is a fighter of invisible diseases (namely her own). She is the Writer of the Blog “The Burned Hand”. She is also the Owner and Operator of Vitalize You. Both are now a part of The Wellness Universe Directory. Join us as she shares an all natural approach to wellness and recovery, The recorded playback is here blog talk radio.

I have connected with many people over the years and I feel most strongly connected to people with illness.  But recovery can be many things to many people.  It can be drugs, alcohol, pain killers, but it can also be recovery from internal conflicts.  Depression, fertility issues, things people cannot see and in no way shape or form have the right to judge your path.  So please take a moment to listen in if you have time.  If not, I will probably come back and drop a link in this post later with the recording.  We’ll see how I sound first.  Wink.  P.S. Ihaveneverdonethisbeforesodontbejudgingme

But I know you will be cheering me on!!

happy

Blogiversary!

Happy Blogiversary to us!  Without you reading my posts, there wouldn’t be a blog.  Ok, that’s not true, I would be lonely, but the truth is, I write for me as I’ve always said.  It heals something deep down inside me that was broken the day I found out about my first diagnosis of an “invisible disease” named Porphyria.  So without further ado, let’s go back there, shall we?  Cue psychedelic swirly things.  And poof!  We are in 1997.  That was the New Year’s Eve all the crazy decided it was time to come out.  It started with tests coming back odd…and I thought my life was just beginning with my soon-to-be husband back then.  Then I get told about the cervical dysplasia and I admit the word pre-cancerous cells is scary.  It just is.

So as we move into 1998, the year does not get any better at that point.  I find a man I am madly in love with and now I am falling apart…in more ways than one.  That’s when the blisters started.  Blisters. Are.  Bad.  These were not your ordinary ones mind you, well have a read over there at my link.  I’ll wait.  Humming music in my head.  Okay, back on track.  See I told you.  They used LATIN words.  Latin.  On me.  Who did they think they were dealing with??  I had a B.A. in English and was a researcher.  Of course I was going to find out what they trying to hide.  And it wasn’t going to be good…but I already knew the that the second she whispered to the other doctor.

Anyway, I consoled myself back then with the fact that out of all the porphyrias, mine seemed to be the less likely to cause internal pain.  I didn’t think about the psychological at the time.  The fact that I was such a strong person and this was slowly killing me inside.  But, I had a wedding to plan so let’s get to the rest of 1998, and how it lingered on.  You will want to read that link over there again.  I’ll wait for you to catch up because that one includes everyone’s favorite subject.  Vampire lore (hint, I do not sparkle, but yes, the burning part is real).  I have been told I am ageless.  There is some truth to that part of the myth as well.  I do get my blood taken for life.  But I would not wish this on even the most fervent Twilight fan.  P.S. that vamp is dumb.  My man Damon Salvatore is much better…in fact any vampire is better than Mr.  Sparkle.  Just my opinion.

Okay, back to me getting married at this point in my life with pints of blood taken every week, no sunlight, no birth control, no alcohol, and blisters still present.  Did I mention my skin burned?  Burned all over, but especially my hands.  Ding, ding ding!  See how I came up with the quote title??  It made perfect sense.  Love of literature combined with the horrible stuff going on in my body.  Poof.  Perfect title.  So let’s finish up remembering why I started this blog by reading this post the Summer of 1998.  And this my friends, is why I need to finish my book.  I believe my story can and does help others feel less alone in this world.  And this was just the beginning.

hope

Awww shucks y’all…

Breathe in.  Focus on your breath.  Breathe out.  Whooosh.  What am I doing?  Oh hi there.  Nothing.  People are trying to make me cry and stuff…but like that man in Cloudy with a Chance of Meatballs 2, I am holding it back.  Please tell me you clicked on that link.  It’s funny.  Shhh.  Kids movies are funny…plus I don’t see erm adult movies anymore.  Back to the point of this post.

I am counting the good days, the good things that happen, and the good people in my life.  I am ignoring the bad right now because it’s something I need to do for myself.  It is one of my coping mechanisms when I am having a hard time.  Somehow, God, the universe and good people know when I am having a hard time.  Ok, so I tell God things all the time, but it’s kind of like telling your teacher…maybe even tattling on yourself.  You can’t help but think God, are you listening to me?  Am I in time-out now?  Or maybe He’s like “Aimee, calm down.  I am trying to take of the other 1,000,000 people who need me right now.  Just chill.”  So here I am chilling.  Occasionally going God, pick me!  Pick me!  It’s my turn!!!  I am being patient.  Well, that’s when He sends in my friends.  My support system.  People who are there to help.

Knowing that I have a “life sentence” of dealing with the ups and downs of invisible diseases, well, I am not going to lie, I do have “woe is me” days and I hate those days.  So I work extra hard to focus on others on those days.  I built my fan page around picking up people like me.  So imagine my surprise when I woke up one morning, way after all you other nice people have gone to work, and found a note on my wall that I was one of 22 most inspirational pages for my friend Sheila.  Well, I was shocked.  Look for yourself…I am actually there.  Have a peek.  Really.  It’s still there.  I thought maybe it was going to go away like magic, but it’s still there!!  22 Most Inspiring Facebook Pages.   Ta-dahhhhhh.

A sense of “you must be doing something right” came over me.  Then this contest jumped up in my face here on Best Health Blogs 2014.  And I thought why not me too?  I got a later start than everyone else who knew about the contest, but it can’t hurt.  I technically need a mere 1000 votes to catch up, but it’s for $1,000 and I would definitely put that money to good use as I am paying off dachshund bills, backed up sink, and erm things that were ruined in my attic like my brand-new Christmas tree, but who’s counting?  I’m not.  Oh and that burning smell in my mini-van that I continue to pray to God will keep working…so we dump more oil in and keep on going (P.S.  it’s got some sort of oil leak…but it’s fine).  So these things I do not focus on.  I don’t.  I do that thing that children do when they can’t hear you…I cover my ears and go lalalalalala.   Ignore.  Can’t deal with you right now.

And guess what?  It works for me because I can focus on the good.  When I tell you the “bad” and you understand that someone out there gets it, not just kinda gets it, but really and truly could look you in the eye and say “I have been where you are, I might still be there, but it’s getting better day by day.”  And you realize that you are not always going to be wherever “there” is.  That it might be bad at this moment.  It might.  But stop, breathe in and out and find the good in your life.  It’s there.  Trust me sisters and brothers, it’s there.  Oh and note to self, God hasn’t stop listening.  He hears you.  He is making way right now for some amazing things to come into your life.  So put on your cape, and start focusing on the good.  You can do this.

empower cape time

Fappiness…

I feel like  I need to give you permission to be honest with yourself.  So there it is.  You have my permission (like you needed it, but anyway, you have it).  If you were to be really honest with yourself, truly honest, what would you say to yourself?  I know what I would say because I couldn’t sleep last night.  That’s always an indicator that I need to write about the truth.  How I truly feel.  Without the pretty stuff.  So here it is.

I don’t feel thankful right now.  I don’t.  I just imagined a collective gasp from like 20,000 people.  In reality, you might just merely be thinking ok, why?  Or maybe you are thinking you have lots to be thankful for, why are you not thankful???  I demand it.  If you thought the first thing, you get me.  If you thought the second, I want to explain.  It’s not that I’m NOT thankful…I am.  I am just having a hard time feeling that way some days.  I know I have so much in my life to be thankful for.  I do.  I know this.  But unfortunately, there is something inside me that hasn’t been getting filled up lately and I don’t know how to fix that.

As I talked to my husband about it last night, I think he began to understand.  I didn’t want to talk about it because I felt like I was ungrateful.  I felt like the “Inspirational Page Owners Police” were going to come and take away my license to operate a motivational page.  But then he said why can’t you write about the truth?  And that seemed easier.

Two years ago when I realized that something else was happening to my body yet again, I made the decision to stop teaching.  I went to my husband and I calmly said that I couldn’t explain it, but teaching was making me more sick.  I just knew it.  The last year that I taught I was out many days until finally, I was out for 3 solid weeks.  That year started off with a breast cancer scare, and I don’t know if I really recovered fully after that.  I was on edge.  Something was coming, but I couldn’t explain what it was.

I would sing my happy songs, smile at the beautiful children, and fake smile at everyone else.  I had previously been known as Mrs. Happy.  In my head, I was now Mrs. Fappy.  Fake-happy.  The pain in my body had already been building up for years and I flinched when anyone touched me.  If the children were sick, I put them to the back of the carpet, because yes dear parents, a few of you sent your darlings to school on Tylenol hoping I wouldn’t notice, but I always did.  They had fevers and were burning up after they had already hugged me and loved on me because that’s just how I am.  I am not going to let them be sick in my room without them knowing I still love them and want to take care of them.  I did, however, have them go to the nurse.  Sometimes you came and picked them up, other times, not so much.  You were busy and had no other options…I get it, but it made things difficult.

Unfortunately, I am immune compromised and my immune system isn’t what it used to be 17 years ago.  So I knew that I couldn’t operate this way anymore because I worked in a school where some parents didn’t have the means to take care of their children and really, truly,  were doing the best they could at that moment.  It was just difficult on me.  Emotionally, it had taken a toll long before now.

I could tell you the series of ridiculous things that happened to me up to this point in my life, but it doesn’t really matter right now.  All that matters is right now, I am trying to find the thankfulness in life.  Not just go through the motions.  I also know that money does not solve problems, I get that, I do, but sometimes I wish we had some wiggle room.  I feel responsible for my decision to stop teaching full-time because there is no longer any wiggle room…if there truly ever was.  I have to weigh decisions carefully on what we spend money on, and when I make a poor decision, I beat myself up.  Even going to the doctors cost me money I can ill afford to pay when they want to see me back in 6 weeks…at $35 a trip because it’s a specialist.  All I freaking see are specialists.  With 4.5 diseases that most people have never heard of I was told by one doctor, “It’s like building a house.  You wouldn’t expect the plumber to know about carpentry, right?”  Meh.  I see your analogy and I raise it a “I am trying to be seen in one place so this doesn’t cost me ridiculous amounts of money all the time!!!” stare.  Because sometimes, I just can’t respond to people.  The words that would come out are not nice.

So, the point to this entire erm rant?  I get you Wayne Brady and your breakdown.  I love you man.  I really do.  I love you Robin Williams and I miss you.  But I get you too.  But let’s start talking about “Fappiness” more and how it’s okay to feel this way at times.  Let’s talk about this and bring this out in the open.  Stop trying to fix it.  Just let it be.  And talk about it, until it’s okay to be fappy…

Fappy