“I love being married. It’s so great to find that one special person you want to annoy for the rest of your life.”

It’s been a busy few weeks.  Worked a hellish half week, worked out, took a mini vacation with my Mom to Indianapolis for a late mother’s day gift, and my husband finally returned Friday from a two week work trip.

The last few weeks were, well…different… without him at home.  I’m not going to act surprised like I never realized how much he helped around the house until he left.  I knew darn well how much he did and became very paranoid after he left.  Could I do it all??  Could I work, keep up with my workouts, take care of the dogs, take care of the house, the chores, and all the little things AND not have my fibro attack me full force?

My answer to this now that the trip is all said and done is I “kind of” survived. 

My husband was the main coffee maker each morning (mostly because he tends to be an hour or two before me.)  I have discovered I am absolutely incapable of pouring coffee grounds into the coffee maker without spilling them all over the counter and kitchen floor.  I’m pretty sure my dogs had a good caffeine buzz going for the last few weeks since they are always right under your feet in the kitchen looking for clumsy food droppings!

While I may like to complain that I can’t understand how two people create so much laundry, I am now thinking it’s a bigger pain the rear doing laundry for one.  Yes…I didn’t have to do it as often, but the gross truth-be-told problem?  My Zumba clothes (soaked from class) sat in a pile in the hamper for too long and pulling out wet clothes three days later is…as I’m sure you’re already thinking…disgusting!

Sleeping is enough of a challenge with Fibro, but, for me, not having my routine at bed time or my husband next to me only made it worse.  The last two weeks brought the worst sleep I have had in years.  I tried to “make the best” of it with the “I have the bed all to myself so I’m going to stretch out in all directions” theory, but it was a huge failure.  The first night I think I stretched too far and woke up with a terrible stiff neck. The next multiple nights I saw the clock hit two or three, and by the night before my trip with my mom, I just gave up and slept on the couch.

I STILL can’t cook.  I’m not sure why my husbands leaving made me think that I would magically pick up the skill out of necessity or something but I was dead wrong.  I made a turkey burger the second night, but had to ask my husband if the colors coming out of the juice were safe to eat.  He said it was fine, but my stomach had already turned from the thought I may have poisoned myself and I couldn’t finish it.  This led to a few weeks of eating really badly.  Not junk food badly, just had no appetite.  I have to thank my mom for getting my appetite back when we went to Indy and I tried to eat my weight in brisket. Y.um.m.y.

I survived the yard work ok, although I’m convinced our weed eater only has eyes for my husband since it never wanted to charge.  I mowed and pulled weeds out of the garden, but the rest had to wait until he came back.  To be honest, I think he was glad to do it.  He actually really enjoys working in yard, but it’s a shame Indiana had 90 degree weather waiting on him when he came back.  I have to toot my own horn here and say “Thank goodness” I am not heavy anymore.  I couldn’t help in the yard when I was heavy without getting heat sick and am so happy I can do these things now…and as much as I never thought I would say it, I actually really enjoy it.  I know my husband is happy too, it’s a LOT of work for one person!

By the end of the last week I felt really sick.  I’m sure it wasn’t eating well combined with not sleeping well, and a little bit of fibro mixed in, but I felt horrible.  I had to leave work early Wednesday.  My heart was racing, I felt like I was going to throw up and felt like I was running a fever.  I went home and slept for four hours and started to feel a little more human.  I was miserable.

 

What I thought about most (and with perfect timing with Memorial Day coming tomorrow) is I have no idea how service men and women leave each other for so long.  Although this past few weeks seemed like a lifetime, I feel very fortunate.  I don’t know how those husbands, wives, and families do it.  A tremendous thank you to them for serving our country and being strong enough to go through everything they do for our freedom.  Two weeks was hard, I can’t imagine months, or even years of being away from home.  Thank you all.

I will have to say my trip with my Mom came with perfect timing.  It was the night before my husband came home and a lovely way to pass the time.  I hate being four hours away from her, but I can tell the distance hasn’t prevented so many similarities in our personalities.  We both got lost going to the hotel, we are drawn to similar clothing styles while shopping, and let’s face it…we look so much alike it’s uncanny.  While shopping, I’m pretty sure we completely confused a sales girl.  My mom is probably convinced that she was trying to figure out if we were together, but I’m convinced she was trying to figure out if we were mother and daughter, or sisters.  My mom is one hot lady!

We had a fantastic dinner and got to really talk.  I talked about my Fibro and how the video contest I was recently in impacted me so much. We talked about her life after breast cancer, our husbands, and the excitement we have to find out the sex of the baby that is on the way from my sister.  It was very relaxing.  We ended the night in the hotel hot tub, which I think should be covered by insurance for anyone with Fibro.  I hope my mom and I can travel more in the future, and I promise, when I win the lottery (which my mom lovingly pointed out I have to actually buy tickets first) that we are taking a trip to New York City!!

Today I get a visit from my sister and her family.  I’m excited to see them and my adorable nephew.  I’m so glad the end of this few weeks has been filled with family!

 

How on earth do you Zumba?

Ahh…the inevitable question has been asked once again today.

Actually, (especially since my video), I’ve been asked this question more times than I can count.

I am going to do my very best to answer it.  Keep in mind this is just my opinion and experience, PLEASE check with your doctor before trying any exercise program.

So…the question of the day is…”How on earth do you Zumba with Fibromyalgia?”

Truth be told, I was doing Zumba for about four or five months before being diagnosed, so my body was already somewhat conditioned for cardio.  But please also keep in mind, I was still considered obese and was, by no means, in “good” shape.  I was just starting my weight loss and was devastated and I might not reach my goals.  I remember very clearly that the gym was having a weight loss challenge.  My friend and I had entered.  The final weigh in was in March and I was diagnosed in February. 

I gave up on a lot of my activity for while and didn’t win the weight loss challenge (which was ok because I won the next year).  I was scared.  I wasn’t sure what I was “allowed” to do.  I didn’t know what would happen if I tried.  Would I get sick? Would I pass out?  Would my legs fall off?  Who knew?  I knew so little and so did everyone else around me.

As I’m sure most of you went through, it took months before I could get into a Rheumatologist.  So with major Zumba withdrawals (and as I have mentioned before), my first question to him was if I could still Zumba.  He said I could, so back to Zumba I went.

But I went with baby steps…

Since I had spent the last few months with fevers, pain, laid out in bed with back pain and a few trips to the hospital, my body had to readjust. 

For those of you who have never tried Zumba, it can be as hard or as easy as you want it to be.  When I started back in, I adjusted it for how I was feeling that day.  If I was feeling strong, I did the high intensity moves, or the jumps, or all the turns.  If I was having a bad day, I’d modify…no jumps, no turns, no squats if my knees were saying “no”, and so on and so forth.  Also, I was afraid to sit out a song or two if I needed to. 

Don’t let the “cardio” part of Zumba frighten you away. There is nothing about a salsa that feels like a run, nothing about a cumbia that makes you feel like you’re on an elliptical…It’s just dancing.  Moving…even if the steps aren’t right, it doesn’t matter as long as your body is moving. 

There are also multiple options for Zumba classes.  You don’t have to take a “basic” Zumba class or a “Toning” class.  There is also the option for Zumba Gold.  It gets a reputation for being for seniors, but it’s also a great option for chronic pain or for people who are just starting to work out.  It’s a lower intensity class and a way to step into Zumba and give it a try. 

There are also aqua Zumba classes in the pool.  I’ve yet to try one, but I’m dying to. We don’t have a lot of aqua class in our area but the next chance I get I’m going to try it out. 

I’m not saying Zumba is the answer or say that EVERYONE out there with Fibro should be in a Zumba class.  It just so happened to be what worked for me, and when it’s all said and done, finding what works for you is the most important thing you can do if you’re wanting to get active. 

So I’m sure you now have more questions:

“Don’t you hurt after a class?”  “Aren’t you fatigued after a class?”

My answer to both:  Sometimes.

I’ve learned to adjust, and as my body got more conditioned to handle the exercise, the less these have been an issue. 

The “soreness” was more from working out (and anyone who has not worked out in awhile would have this…chronic pain condition or not) than from fibro.  Sometimes I push myself too hard and it happens. ..but it’s always temporary. 

The fatigue can be a problem.  My solution to this is to try to do my classes in the evening.  If I’m exhausted when I get home, it doesn’t matter.  There are only a few hours until bed time…and sometimes it even helps with the insomnia!  Not always, but any night of restful sleep is a relief.  Oh…and an energy drink here and there has helped a little too.

If I do Zumba during the day (for a Zumbathon or event) I make sure to give myself that evening off, or at least give myself time to take a nap.  I learned this the hard way.  I wanted to be tough and “fight” through the fatigue, but all that led to was a really grumpy afternoon and evening.

I know a lot of people feel the need to workout first thing in the morning, but I recommend trying evening workouts. 

So I have no idea if I answered your question.  I hope I at least shed light on the mystery question.  Chronic pain or not, it takes your body time to adjust and get used to working out.  Soreness may not always mean you did something wrong, but rather that you did something right for those muscles that haven’t moved in so long!

Guilty as Charged…

Thank you Health.com for this article…

So…

What mistakes are you guilty of?

“13 Mistakes Fibromyalgia Patients Make.”   http://www.health.com/health/gallery/0,,20389399_10,00.html

1-Not tracking your pain.

I am guilty as charged with this one.   I understand the thought process behind it.  Track your pain, see the connections in the time of day, weather, etc.   Did I do something that day that made it feel better?  Etc.

To be honest there are two reasons I don’t track my pain.

First…my pain is totally random.  I get the usual “rainy day” pains and “stress” pains, but then I also get the days like today:  75 degrees, sunny, beautiful, and I want to rip my neck off. 

Second…I just plain don’t want to think about it when I don’t have to.  If I’m having a pain free day then I’m not going bring up the subject of pain in any way, shape or form.  I’m always afraid I’ll curse myself by saying it out loud.

2- Expecting too much from medication.

Since I’ve tried the “fibro” drugs with no luck, I’m not guilty of this one, but I bet a lot of fibro patients are…and thanks to some misleading television commercials…so is the public. 

3- Refusing to consider off-label drugs.

Guilty again.  The example they use here is using an anti-depressant to treat fibromyalgia.  I refuse to take an anti-depressant and will forever refuse an anti-depressant. I gladly take pain over the way these drugs change my mental state.  Convincing doctors of this is a whole separate battle.

4- Not exploring alternatives.

Yoga, meditation, Tai Chi, Pilates, etc.  I am not guilty of this one, but it’s a sore subject for me.  Because I am an active person with fibro, I get a lot of negative comments, disbelief, and arguments on whether fibro patients can or cannot exercise regularly.   

“You can’t possibly have fibro and do cardio.” 

“Give it time, eventually you’ll be so depressed from fibro you won’t want to do those things anymore .” (Gee…thanks for the uplifting words!)

“Your fibro must not be as bad as mine because you exercise.”  Did the people (yes multiple) who said this to me ever stop to think….maybe my fibro isn’t as bad as yours BECAUSE I exercise.  I can’t make you try, but I hope by continuing to do what I do and showing that I’m, in fact, still alive the next day will, at the very least, inspire someone to try. 

5-Sticking with the wrong Doctor.

This is one of the main questions I get on this blog and through facebook messages. “Should I switch Doctors.”  I’m never quite sure how to answer this question, but I can say I went through MULTIPLE doctors (both family and Rheumatologist) before found the ones I have now.  I usually ask the person who asks me this question, “Are you getting what you want from your doctor in regards to how you want to treat your fibro?”  For example:  I don’t take pain meds.  My current rheumatologist was the only one I’ve had who was willing to use alternative treatments (like physical therapy) and not push meds on me. 

6- Denying that you’re sick.

They describe this as refusing to believe you actually have fibromyalgia.  I’m not sure I am, or ever was, guilty of directly refusing I have fibro, but I have definitely been guilty of refusing to believe some of the symptoms I’ve had that were related to it.

7- Not enlisting family support.

Guilty. Guilty. Guilty.  Just ask my husband…it took me a long time to accept his help. 

8-Not reaching out to others.

This, sadly, can backfire in a lot of ways.  I have been lucky to have very understanding friends, but the subject can really scare some people away too.  It’s understandable…no one really knows what to say.  Although this article uses this as more of a “find a friend to lean on” example, I would also say that this example could also be used as a warning that fibro can lead to you wanting to isolate yourself from your friends and the word…don’t let it!  My friends have distracted me with laughter from SO many flares!

9- Not talking about it.

Not guilty here.  Please everyone!  Please don’t be afraid to talk about it.  Understanding won’t come without this!

10-Feeling guilty.

Guilty…of feeling guilty.  I feel guilty when I have to rely on my husband more than I’d like too.  When I miss out on a party or gathering because I feel like poo.  When I’m tired and snappy…the list could go on and on.

11- Letting Fibromyalgia get to you.

Guilty and I know someone with fibro would be lying if they said this never happened to them. 

12- Taking life too seriously.

*Sigh* Guilty again.  When you spend most of your days in “survival mode” it’s hard not get caught up in seriousness of the day.  Survive the pain…Survive the fog…Survive without falling asleep…Survive another headache, etc.  Zumba saves me from this.  It’s one hour to act as crazy as I want and not think of anything important.

13- Not moving because it hurts too much.

See my response to #4.

Hmmm…according to this I’m making a lot of mistakes.  How about you?

Round and Round…

The results are in and, as expected, my blood/urine tests came out normal.  No new drugs at this time but my doctor suggested getting tests re-done when I have my follow up appointment in six weeks.

It was suggested to have my thyroid checked again, but in the process of having the millions of tests to eventually diagnose fibro, my thyroid has always been fine.  I don’t have the patience (or the money) to re-do the multitude of tests that were done to bring me to my fibromyalgia diagnosis. 

I’m back on the merry-go-round and I’m ready to get off.  This happened last spring as well (as I’ve noticed my symptoms are worse in the spring) and the doctors never seemed to want to say symptoms I was having were connected to the fibro.  I understand, to a point, why they are resistant to say any problems are just due to a fibro flare (in case it’s something serious and they miss it), but at some point, the medical field needs to swallow their pride and mention other symptoms of fibro, out-loud, instead of hiding behind the “chronic pain” issue.  As a fibro patient, this is my biggest frustration.  I’ve learned how to manage my pain, but the other symptoms I can’t seem to figure out….and sadly, neither can our doctors (even the good ones like mine). 

My second biggest frustration; there is just not enough research going on to bring an understanding to us and to our doctors.  Even the National Fibromyalgia Research Association’s latest “what’s new” research is dated January, 2011.  I hope this Fibromyalgia Awareness Day not only brought some understanding to the public, but some much needed funding as well.

On the topic of Fibromyalgia Awareness…my video from the Fibromyalgia Awareness Contest 2012 has now had over 1000 hits on YouTube.  I have had many people subscribe to me now and feel like I may want to make more videos…but of what?

So I’m reaching out to you…What are some video topics you would like to see?  Have you read any of my blog topics that you’d love to see in video?  Most people know the run-down of symptoms by now, but is there  symptom you want to know more about?  Let me know!  Ideas are more than welcome!

My winnings!

I got my fibro fighter package today from winning the Fibromyalgia Awarness 2012 video challenge.  I’m so excited to splash this purple everywhere!  Thanks again to http://fibromodem.wordpress.com/ for having the contest!

 

 

Mission Accomplished…

This week I fulfilled my fibro awareness challenge by letting my rheumatologist know about all of the side effects I’ve been having.  I have to give the office credit for their patience.  I saw the nurse practicioner  this visit and she spent a long time with me answering my questions.  The appointment was not rushed, and she really took her time.  After some recent experiences with Doctors (see my post about going to the E.R.), it was nice to be treated well.

While I’ve been told my symptoms were not typical of fibromyalgia, I let her know everything anyway…and it actually led me in a direction I was somewhat expecting, but not really mentally ready to take on.  After completing a questionnaire of symptoms, the nurse decided it was time to do another blood/urine test for lupus.  The results haven’t come in just yet, and to be honest, I’m not expecting anything abnormal…however…due to my symptoms she thinks it may be a good idea to go ahead and try a lupus medication.

The plan is to try the medication whether or not the blood/urine tests show anything positive (due to hitting enough symptoms on the questionnaire to lean towards lupus).  If the tests do come back positive, then she might try prednisone as well…which I really don’t want to do due to the side effects. 

Speaking of side effects…

The drug she wants to try with me is Hydroxychloroquine or Plaquenil.  While the side sound mild, the big possible side effect is vision problems…mostly temporary color blindness.  I would have to have an eye exam every six months while taking the drug.

The possible side effects of the drug seem worth the risk (at least on paper…if anyone has experience with this medication PLEASE share!).    

From www.lupus.org, Plaquenil can possibly improve the following:

  • muscle and joint pain
  • inflammation of the lining of the heart (pericarditis)
  • inflammation of the lining of the lung (pleuritis)
  • other symptoms of lupus such as fatigue and fever.

When the tests come back, the nurse practicioner is supposed to call me to start a game plan. 

I have also decided this week that it is time for me to start counseling.  After my lack of being able to breathe for 7 days I thought it may be time to get help with my anxiety.  I have had bad experiences with counseling in the past so I’m going into this somewhat guarded.  My main concern, of course, is he will fail to see the connection of any of the anxiety to my fibromyalgia.  I am not afraid to try different doctors until I find someone patient in trying to understand this.  I start my sessions in June and for the first time, I’m actually excited to start.  I was forced into counseling in the past this is the first time I actually feel “ready” to talk.  

This is another step my own personal fibro awareness challenge.  I’m not sure how many fibro patients receive counseling, but maybe my sharing will, in some way, bring some understanding in the connection between stress and anxiety with fibromyalgia. 

Mission accomplished for this week.  It’s only Tuesday…I’ve been busy… and I’m pooped. 

 

Whoohoo!

To those of you who don’t know, (although I’m not sure how you wouldn’t since I’ve been yapping it everywhere) I won the Fibromyalgia awareness video contest!  Yay!  Thank you so much for voting!

 Special thanks to FibroModem for having the contest.  Please check out her blog here: http://fibromodem.wordpress.com/  She has some great information to share and is very open about her life with Fibro, and I’ve really enjoyed reading her blog!

I have a Fibro Fighter package on the way for winning and I’m super excited to get it!  I’m also very excited to wear the hat and shirt to Zumba and take my mouse pad to work!

 

For those of you who may not know, I’ve had a rough few weeks.  I’ve been down and struggling with major anxiety.  This contest couldn’t have come at a better time, as the comments I’ve received in regards to my video have been so incredibly touching.  I NEVER expected to reach so many people, or better yet, influence them.   I have to share some of the wonderful comments I’ve received for my video:

“I will go to the shop now to get dinner and I will WALK there.”

“Made me see the light, however small, again”

“Inspiring”

“Light at the end of the tunnel”

“Tried Zumba…Loved it.” (of course she did..hehe)

“She’s a badass”   I’m purely being self indulgent listing this one, but love it!

This is my favorite:

“Thought about becoming an instructor (Yoga) but then thought no, I can’t.  This video has made me think.  Maybe I CAN.”

My mom told me to re-read these next time I’m having a bad day…she also told me not to let the comments go to my head…hehe.  Not to worry, Mom, this experience has humbled me more than swelled my head.  I’ve realized I need to give myself more credit.  I’m extremely hard on myself and forget that as I’m going through my day I’m achieving goals just by getting my tired butt out of bed.  Remembering this is much easier said than done for me, but I’m going to try to work on it. 

Thank you again to everyone.  I’m looking forward to May 12th…Don’t forget to wear purple!