Getting back up

As a kid, my grandparents and parents always taught me to be strong, to never give up. Yes, sometimes they would say that I was just plain stubborn. I would always reply that I am just tenacious. But, somehow along the way, Fibromyalgia had beaten me down. It was a slow, steady beating. The type that you really don’t notice, until you realize that you can’t get back up. I would try something. Fail. Get back up, and try again. After awhile, I gave up trying as hard. I lost that tenacity, my stubborness. I could not get back up.

Then, about two years ago, the bull in me called BULLSHIT. My Daddy didn’t raise no fool. Why was I being one? Why did I roll over and play dead? Shit, I ain’t dead yet. I just have Fibromyalgia.

So, I stood up. Dusted myself off, and tried again. But that’s a whole other story

Today, I am thrilled to say that I am off of all my medication. Yes, all. I still have a few fibro flares, but they are only fractions of what they used to be. Yet, that fear of falling down and not being able to get back up is holding onto me with more strength than I care to admit.

Last Summer, I went to climb Half Dome. Well, I should say tried to climb Half Dome. I pushed it on the hike by trying to keep up with my hiking group, and by the time we reached the sub-dome, I fell down and couldn’t get up. Actually, my body plain gave out. I started seizing and an overwhelming pain ran throughout my body. I’m sure on the outside, I just looked tired. But on the inside, I was screaming with all my might in pain.

Though somehow, I did, I did get up to try again. I made it back down the mountain and continued to fight to improve. As soon as my two week long pain attack ended after Half Dome, I placed another physical goal in my sights — I booked a trip to hike for five days in Peru. Don’t ask me why I went from not making a 22 mile day hike to booking a high elevation, almost week long hike in another country. But if you are gonna live, you might as well give it all you’ve got. Right?

Next week, I am off to Peru to hike to Machu Picchu, five days of hiking in fact. My emotions are all over the place. I’m excited. I’m thrilled. But most of all, I am scared to death. And, this fear is eating me alive. It’s starting to eat away at the joy. What if I fall down again? What if I can’t do it? What if I have a pain attack on day one? Tons of what ifs. And this time, I am doing this with perfect strangers.

Then, I remember that I am in that stage of my life of  called “after I no longer accepted that I couldn’t do it.”  So, I’m getting up. Packing my bags and facing my fear head on.

Here’s to living! See ya when I get back.

Getting My Life Back to What It Was Like Before Fibro

In March, I hit my 10 year anniversary of my rebirth. Well, kinda a rebirth.

We all divide our lives into before ___ and after ____. Before I lived in SF, after I moved to NYC, before kids, after the kids went off to school…and so on and so on. For me, it’s always been before my life with fibro and after my hysterectomy. On March 14th, I hit my 10 year anniversary of my last surgery – my hysterectomy. And so, it got me thinking…can I remember my life before fibro? I mean, I can remember my life before my hysterectomy. But, that’s easy. After all, it’s only 10 years ago. But somehow, my memory fades when I try to recall what my life was like before fibro. It’s become so much of who I am, that I can’t see my life without it. Until now…

I strive to be myself and not my fibro. However, that’s easier said than done. Fibro has ultimately changed what I can do, what I eat, how I play and above all who I am. But for years now, even though I fight it, there has always been a little voice in the back of my head saying, “You can’t eat that, do that or try that because you have fibro.” Today, that voice has disappeared. Today, I am in charge of my own life, what I do and how I do it. Yes, fibro is still part of me, but it is not me.

How’d I do it you ask? Well…

On step at a time. Baby steps. I made up my mind that I would and could achieve my goals.

Cataract FallsGoal #1: Get active

For the past decade, I have strived to be healthy and happy. However, I never have been an overly active person. I’ll admit it – I was much more of a couch potato than an athlete. Fibro was always an excuse not to get off that damn sofa. So, I decided to drop the excuses and move. Just move.

For years now, there have studies showing that even minimal exercise can reduce fibromyalgia pain. Little did I know that my daily “just move” routine would almost eliminate my pain attacks. After 6 weeks of daily walking 1-2 miles, my pain attacks went from one pain attack a week at level 7-8 and one 10+ attack a month, to virtually zero pain attacks. In fact, my first day above a pain level of 6 came after I missed my walks for 2 days in a row around my 8 week mark. I noticed a huge correlation between my pain and my activity. If I didn’t walk, I was in pain the next day. And when I walked, even if I was in pain, the intensity level of pain dramatically decreased. Such a catch 22.

 

IMG_4966Goal #2: Go on vacation without second guessing what I could do based on my fibro

I hate it when I go on vacation and have to take a rest or miss out on some activity because of a pain flare up. When I booked my last trip to Thailand, that was one of my biggest fears – FOMO. So about 6 – 8 weeks into my exercise routine, I added going to the group fitness gym around the corner from me. At first, I thought I was going to die 10 minutes into the 55 minute routine. However, after about 6 weeks of going 2-3 times a week, I could do the entire 55 minutes without dying – sweating and panting, but not dying.

In March, I went to Thailand. I managed to walk so much that I wore holes in my two pairs of my shoes. That’s not all — I mountain biked until my ass hurt, I kayaked down the river for over 5 hours, and I even rode elephants for days. All without ever letting my fibro get the better of me. It was truly an adventure I will never forget.

photo (1)Goal #3: Get back to a healthy weight – one that is bikini ready

Ok, I’m working on this one right now. I am still exercising regularly. And, as of yesterday, I am changing my diet — less sugar, more healthy snacks. My gym is doing a 6 week program. I’m at the end of week 1. Wish me luck!

 

 

 

half dome

Goal #4: Climb Half Dome

If you told me a year ago that I would be training to climb Half Dome – a high intensity 14+ mile hike, I would of laughed at you. No way would I ever believe that a person suffering from Fibromyalgia could ever hike 14+ miles in one day, nevertheless climb Half Dome. And you know what? I can now see that climb safely and securely in my not-so-distant future — less than 8 weeks to be specific. Stay tuned for updates…

Goal #5: ???

What should I do next? Where should I go next? I am now starting to feel like the world is my oyster.

Even though my goals didn’t involve being able to live a life free of fibro, that’s what happened. Such a happy side effect indeed.🙂

Things to Remember When You Have Fibro

After living with fibromyalgia for over a decade, you’d think that I have this condition all figured out. Right?

Well, not quite. I still have to remind myself a few things. So, I made a lil’ deck to help myself and others remember the simple things to help cope with fibromyalgia.

Do you have fibro or chronic pain?

I’d love to hear what simple reminders help you out. Please let me know in the comments below.

Don’t Break The Chain: How To Apply Seinfeld’s Productivity Calendar to Help Your Fibro

Dont-Break-the-ChainAbout three months ago, I went for a walk with one of my dear friends. It was a beautiful day here in San Francisco. There was a calmness in the city — maybe because it was Thanksgiving or maybe because Carl The Fog had decided to sleep in. What ever the reason, it was a great day for a hike . So, I called my friend up and off we went.

My friend is a business coach. He’s been telling his clients for years to make the most out of their work and life, especially their health. However, he wasn’t eating his own dog food. He was out of shape and the heaviest he has ever been. So, he finally decided to take his own advice and get in shape. This particular hiking day he was struggling to walk due to a newly twisted ankle. But did that stop him? No, not at all.

I have been struggling with fibro for over a decade now. Too many times, I have started and stopped a new exercise routine because of a pain flare up. And as I walked with my friend, I wondered how he managed everyday to exercise through the pain of his ankle and well let’s face it, life in general. He had one simple answer for me “Don’t Break The Chain”.

The “Don’t Break The Chain” Process

Sometimes the simplest solutions yield the largest and longest-lasting results. “Don’t Break the Chain” is indeed simple, and if you follow the process, it will change your habits forever. Originally made famous by comedian Jerry Seinfeld, the process is simple. Take a big, huge calendar and display it where you will see it everyday. (For me, I placed mine on my bedroom mirror.) If you don’t have a paper calendar, no need to worry — just make one by drawing a grid. For each day you do your task, mark out that day out with a big red marker. Then, it’s easy. Don’t break the chain.

It sounds easy. But, it can be difficult. Say you are about to go to bed, and you see a big gapping hole on the day where a big red X should be. Now, you don’t want to break the chain and start all over again. Do you?

My Chain Experience

I had one simple goal for my chain – movement. It’s all too easy with fibro to sit around and do nothing. Sometimes, that’s all you can do due to the pain. However, I have found that the more I move around and keep my blood pumping the better I feel. Like duh! Right?

So, I started my chain on Thanksgiving day after that walk with my dear friend. I went home and drew out a calendar for 8 weeks, and crossed off my first day. Now, if  only I could keep the chain for 8 weeks, I’d be a golden.

Week one was easy. It was gratifying to go for a walk and come back and mark off the day with a big fat ol’ red X. Week two was the same. Easy going. I tried not to push it. My only goal was to move — to walk. Sometimes I walked around the block. Other times I walked two miles, depending on how I felt.

By week three, my chain was long. And, low and behold I hit a flare up. However, this flare up was the level of pain, a 6-7, that I used to experience at the end of my work week. I was extremely tired. My stomach would not behave, and all my joints hurt. But, all I had to do was look at that chain. Don’t break that chain. So, off I went for a walk around the block. Don’t break the chain.

Results

My chain is now over 10 weeks long. And, you know what…it’s working! My daily pain levels have decreased from a level 4 (0 being zero pain and 10 being kill me now) to a level 2. My weekly pain attacks have almost disappeared. Yes, I have had a flare up with the occasional stress and travel. However, they are at a level 5-6, and never reach a level 10.

For the first 6 weeks, I was walking daily, some days longer than others. After about 6 weeks, I plateaued. So, I decided to join the fitness studio around the corner from my house. When I first started the 55 minute routine of cardio, weights and pilates, I thought I was going to die 10 minutes into the routine. But, I stuck with it. Don’t break the chain.

Now, I go to the gym 3- 4 times a week and walk 2-4 times a week. Even when I had the flu for 6 days, I never broke that damn chain. Since Thanksgiving, I have decreased the amount of meds I take and I haven’t even touched the heavy pain meds.

Am I a fitness guru now? Far from it. However, I feel normal. Even though the sensitivities that come with fibro are still with me, the pain has taken a backseat to my unbreakable chain.

So, don’t break that chain!

The Super Villains Of Chronic Pain

7497099180_de9ebed4c2_z

One would think that the main super villain of chronic pain is actually the pain itself. That’s not the case. Pain is only the catalyst to an evil plot that inflicts harm and discord. The true evil in this tale are pain’s band of super villains. The actions of these super villains reinforce fear and uncertainty in an already unstable world, thus continuing the physical and emotional pain into a chronic state of chaos.

Introducing the real super villains of chronic pain:

The Green Goblin

This super villain loves to spread a feeling of ill appetite and nausea. No matter what one eats or drinks, there is zero rhyme or reason as to when and how much The Green Goblin will strike. Medications and acidic foods help his power increase with intensity. Mint, ginger and other herbal remedies are sometimes your only defense against this opponent.

The Deadly Taint

Usually striking a few days before a full-blown pain attack, the Deadly Taint can hit hard and fast. Sometimes, the Taint’s powers can last throughout the entire pain episode, where as other times this villain comes and goes with ease. Soft toilet paper, wet wipes and a book in the bathroom can lesson the unease of the Deadly Taint’s attack.

Sleep Monger

The Sleep Monger’s name is cursed most often during the wee hours of the night. The Monger’s main power is to keep you wide awake no matter ow much you want and need to sleep. Defensive measures such as a warm glass of milk, a lavender bath, a dark room or the most comfortable of comfy beds is no match for the Monger’s evil need to keep you awake. Some say that the Sleep Monger owns stock in silly late night TV shows and AngryBird. However, reports have never comfirmed this to be true or just a rumor.

The Fog

Known to many as Fibro Fog, this super villain attacks when a fibromite least expects it and needs it. (For example, it just attacked me. I had to spell “least” five times before I actually typed the correct word.) The Fog is known for its inapt ability to place your keys in the freezer, milk on your toast and butter in your tea. Task lists and keeping a schedule is the best way to combat the Fog.

The Gloom Gang: Doctor Doom, Mr. Solitude and Shade Master

This gang leaves a trace of melancholy in the wake of their destruction. Members of the Gloom Gang can attack on their own, but they tend to hit all at once or in succession of one another. A Gloom attack usually starts with Mr. Solitude forcing a fibromite to be alone in their pain. Next, Shade Master spreads the fear of the pain with no bight end in sight. This feeling of fear and hopelessness is the Shade Master’s supreme power that helps Doctor Doom lay his path of depression — a path that would make Poe look to be a frolicking happy-go-lucky poet.

The gang strikes best after a fibromite has been fighting all of the other Super Villains for an extended period of time. The Gloom Gang also will speak through idiotic doctors, family and friends by whispering “It’s not real.” Only a fibromite’s best friends and skilled doctors have the weapons to fight The Gloom Gang. Their weapons exist in everyone, but few use them to help fights.  Weapons such as patience and offering help even when it’s rejected are key to killing the gang. A fibromite can cause the gang’s demise by finding joy in the little things.

What weapons do you use to kill this unruly gang of super villains and gloomy miscreants?

Avoiding A Flare-up While At a Conference

imagesThis past week I have been at Content Marketing World. Traveling is already hard enough on my body. But, with all the networking, long hours, tons of work and extra energy a conference takes, your body goes through extra turmoil. It’s just a recipe for disaster — especially if you have fibro. So, how do you balance your business activity needs with your fibromyalgia?

Here’s what I do while I’m traveling for a business conference to make sure I don’t have a fibro flare:

Stick to a routine

We all do stick to a routine at home. Why not do it while you are traveling away from home? Presently, I am in a completely different city on a completely different time zone and therefore on a completely different routine. However, I try to stick as close as possible to my normal routine. When I’m at home, my morning routine is pretty simple — feed the cats, exercise, shower, make breakfast and go to work. So, I try to stick to the same scheduled routine while I am at a conference, minus the feeding of the cats of course. This helps my body adjust to the time change, stay alert and pain free.

Take extra time out for yourself

Crowds and continuous activity can be daunting for anyone, especially if you have a chronic pain disease. There is no rule book that says you HAVE to go to every session at a conference. Take a look at the schedule and see what sessions you can miss or where the gaps are in the schedule, so you can take some “me time”. For Content Marketing World, I skipped a session a day and tried to step away from the crowd for at least one break a day. This helped me remain fresh and alert for not only networking, but the breaks helped my body recharge.

Hydrate, hydrate, hydrate!

I can’t say it enough — hydrate! I usually drink tea, but while I am away at a conference sometimes I need that extra jolt from a cup of coffee or two (or three). There’s nothing worse than coming down off of coffee to bring on a fibro flare. I carry a water bottle with me throughout a conference to make sure I drink water constantly. I also carry one on the plane. This helps me stay hydrated ,and plus it’s handy if I need to take an extra pain medication later on in the day.

Carry extra meds and vitamins

I started taking Emergen-c packets with me every time I travel — so much so that I have a box of the packets located on the shelf by my travel toiletries. The extra boost of vitamins help me not get so exhausted. I also carry with me a variety of meds and herbal teas to help with any mini-flares. At home if my body hurts, I have a variety of homeopathic remedies to help. Well, since it’s kinda hard to carry all of my comforting remedies in my carryon — like a heating pad, ice pack, bath salts, Icy Hot, etc… I have limited my remedies to a few herbal teas and pain medications in different dosages. I carry the different dosages because I just want to dull the pain enough to keep my mind fresh and my body strong enough to continue. The herbal teas are also easy to take anywhere at anytime, all you need is hot water. Most hotels have a mini coffee maker in the room, which is perfect for a cup of Smooth Move or Sleepy Time tea.

Dress for comfort

This tip can really apply to any avid conference goer. What’s the point of wearing heels or a fashionable top if they make you uncomfortable? I find you the best fashion accessory to wear while you are at a conference is a big, bright happy smile.

These are just a few tips I use to get through a conference successfully. Hopefully they will help your next conference or business travel experience be pain free!

What tactics do you use to manage your fibro while at a conference?

5 Myths About Fibromyalgia

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you or a loved one has been diagnosed with fibromyalgia, you may come across some myths and misconceptions while trying to learn all you can about the condition.

Here are the top 5 myths I always hear about fibro:

1. The China Doll – Fibro patients are fragile.

This myth can’t be further from the truth. Sometimes, fibro patients can be emotionally and physically sensitive, but it takes a ton of perseverance and strength to live with fibro. We can’t measure our strength by the number of miles we run or the number of pounds we bench-press  — instead, we measure our strength one day at a time. Today, I am strong enough to get out of bed. Tomorrow, I am strong enough to clean the house. And, the next day, I might be strong enough to try to take over the world… mu ha ha ha

But seriously, everyday it takes great courage to just keep going – to live our lives to the fullest, no matter how much pain we are in that moment.

2. It’s all in your head – Fibro is a made up disease.

Just because you can’t see it, doesn’t mean it does not exist. In the beginning, Fibromyalgia was a last resort diagnosis. One was tested for everything, and when nothing could be diagnosed with certainty, the doctors said you might have fibro. However, that ‘s not the case anymore. Every year, more and more is discovered about the disease — and not just how to diagnosis it. In the early 1980’s, doctors developed a pain point test to diagnosis fibro. Today, “researchers have learned more about it in just the past few years. In people who have fibromyalgia, the brain and spinal cord process pain signals differently. As a result, they react more strongly to touch and pressure, with a heightened sensitivity to pain. It is a real physiological and neurochemical problem.” via MayoClinic

Being that a fibro patients’ brains process things differently, one could say it really is “all in our heads”.

3. The pain can’t be that bad.

At first glance, it might look like the daily pain of fibro isn’t that bad. Daily fibro pain is more exhausting than anything. Imagine that you have an all over body pain, similar to a flu-like-pain, every day. Yeah, it’s just like that.

But then, there are the pain attacks. I usually get one at least once a month. I love to put my best foot forward, so during my attacks, I tend to hide. (Pain attack = hermit.) So most of my friends don’t even know how bad the pain can really be — like kill me now type of pain. Though, I’m never sure if this hide-away-during-pain-attacks is better or worse for my friendships.

4. Fibromyalgia is a women’s disease.

Research shows that about 80-90% of those affected in the US by fibro are women — leaving 10% are men. Now, I’m never sure if this is because women keep trying to figure out what the hell is wrong with them or that men give up trying.

5. There is nothing that can be done to treat Fibromyalgia.

There is no miracle cure for it. But, there are a ton of things from homeopathic to western medicines that can help ease your symptoms. The trick is finding which one, or combination of ones work best for you. And remember, what works for some, might not work for others. So, why advice is nice, it’s best to listen to your own body as you figure out what solution works best for you. However, there are a few that work for almost everyone – diet, exercise and reduced stress.

Fibromyalgia is still a “new” disease. We are still learning new things and constantly debunking myths about it. What have you learned lately about fibromyalgia?

Stay or go? Adjusting to Fibro in a Relationship

images-1When you have been dealing with a chronic illness for over a third of your life, it becomes a part of you. It’s your version of normal. However, it’s only your version, not everyone else’s. And, this is never more apparent than when you are in a relationship.

No one ever tells you that once you find someone who loves you, they might not love the challenges your relationship will face because of  your health. At first, the symptoms are manageable and don’t seem that bad, the therapies don’t really interfere with your relationship—no biggie really.

Yeah, you’re not normal, not fully healthy, but it’s manageable. At some point though, the reality sinks in: this thing is going to be around for awhile, it will impact your relationship and there are no guarantees.

Then the bomb hits. You think you have someone who loves you for you, illness and all. You have to live with this, and they don’t. There’s the dilemna-do they stay or do they go? Do they face your illness’s challenges with you or not?

No one can fully understand what you suffer with everyday, your trials and tribulations. How you can be perfectly fine one day and in agonizing pain the next day? Especially when you have fibro, where others can’t “see” your pain.

How do you make them see what you are going through? Or how do you learn to set them free of your pain? I fear that I will never be strong enough to answer those two questions.

Coping With Extreme Weather

Image

Life is short, so I try to make the most of it. Try new things, venture to new places, and go boldly where no sane person with Fibro would ever go– the Black Rock Desert.

Call me crazy, but I really just wanted to see if my body could handle it. So, I packed up my things. Crossed a few fingers. Hoped for the best, and ventured out to the desert with my boyfriend.

Here’s what I learned in my 72 hours of desert sanctuary– DON’T DO IT! Nah, just kidding.

If you must put yourself in extreme weather conditions, like the 102 degree weather and utter dryness of the Black Rock Desert, try to follow my top 10 tips to survive:

  1. Stick to a routine. We all have our normal routines at home. Try not to change it. This will help your body adjust to the weather conditions.
  2. Take your meds as planned, even if your routine is a little off. I woke up with the sun (at 5-f-ing am)– 3+ hours earlier than normal. I tried to take my meds at 8:00 am, just like I do at home.
  3. Stay covered. It seems simple, but staying in covered from the direct sun helps. I wore a SPF 30 rated long sleeve shirt to protect myself. The last thing I wanted to deal with was a sunburn.
  4. Stay hydrated. Again, it seems simple. We all have meds which can cause us dry mouth. It’s hard to take care of cotton-mouth and stay fully hydrated. Try a variety of drinks- cold and “room” temperature. Also, try to avoid taking any meds that just add to dehydration– for example most opiates cause dry mouth.
  5. Try new therapies. When my body aches, a heating pad or a hot bath always helps. Yeah, like that was going to happen in the desert. Hot therapy does not work when it’s already f-in’ hot outside. I found that cold helped and sleep.
  6. Take every chance to keep your body cool. I froze drinks and took trips to the lake to enjoy a lil’ fresh water. Though, what I really wanted was a cold ice pack for my neck. Maybe, next time I’ll remember to bring one. 
  7. Stay away from alcohol. Yeah, learn from my mistakes. I had some scotch with the boys, and I regretted it the next day.
  8. Keep on your diet. It’s hard to stay on your diet when you are in the desert with limited supplies to a produce market. However, if you pack well, it’s easy to plan ahead.
  9. FInd a quiet place. This seems silly when there was desert as far as the eye can see; however, having some alone time helped me center. At one point, my hypersensitivity kicked in,and everything bugged me. All I needed to do to gain control again was step away from the party.
  10. And my last tip… Book a hotel in the desert- like Las Vegas– and then go to the spa!🙂

Hopefully, these tips will help you on your next camping trip to the desert. (The last tip especially.)

Exercise- The Final Frontier

My fibro is definitely better than it was 10 years ago. However, it’s at a standstill as far as improving. My wonderful doctor said that I need to exercise more- oh boy, just what I wanted to hear. Apparently, the best exercise for fibro is cardio. And here I thought simple stretching like yoga was key.

So, for the past month, I have been trying out cardio to help my fibro. I’ve been speed walking about 2-3 miles every other day. Depending on how I feel, it usually takes me 1/2 an hour to a full hour.

But, just like any treatment routine it has it’s ups and downs.

Downs:

  • Hard to keep routine. Every few days I get a pain attack at night– usually after 3rd day of exercise.
  • Waking up and getting my ass going in the am.

Ups:

  • I’ve lost weight.
  • I have more energy most days.

All the ups and downs aside, I’m continuing to try this exercise routine out for at least 3 months. I have found that 3 months is key to figuring out if a new treatment program will work or not for my fibro.

What about you? What exercise routine works for your fibro? Please let me know in the comments below.

Follow

Get every new post delivered to your Inbox.

Join 860 other followers

%d bloggers like this: