Easy Friendship Isn't Always Easy

I wanted to start this post by saying that having Fibro sucks...but it doesn't always have to. It also has a way of bringing people together. I know that talking about life with Fibro and other chronic pain disorders like it is less than enjoyable for many. Its depressing, harsh, and all together less than pleasant most of the time. That is why so many of us choose to not talk about it. No one wants to hear how bad the pain is today, and tomorrow, and every day next week, and every day for the next month. Its a downer. No one wants to talk to a downer. So we decide to do the best we can to be the upper everyone wants. Everyone except other sufferers.

This is where the easy friend comes in. K and I have known each other for somewhere around 2 years. Not very long in the grand scheme of things, but longer when you consider I've only lived in this area for 3. Recently she was diagnosed with MS.

K had unusual symptoms for a couple days before having what was thought to be a stroke. She was taken to the hospital where she spent the next few days having tests run. Later the diagnosis (preliminary as you generally have to have two or more episodes before a diagnosis) of MS was discussed. Since then she has had to relearn and adapt to her new life with this new disability.

While she and I have been friends, we weren't particularly close. We didn't have a whole lot in common and rarely hung out just the two of us. That, I believe (and hope), will be changing.

MS and Fibro have a lot of things in common. Symptoms, lifestyles, depression, and the lack of ability to relate with others surrounding your disability. Just the other day K and I decided to go out to dinner and spend some time together. I admit, my motives were not entirely pure. I had hopes of asking about her diagnosis, and in a sick way, was happy I was no longer alone.

Now, don't worry...I didn't right out go and ask what it was like living with MS. As any friend would be, I was generally concerned for her and am glad she is recovering remarkably well. As it would turn out, she was just as eager to talk to me. I never kept the fact that I have Fibro a secret from my friends and I openly discuss it with them. We spent hours together that night. Dinner, coffee, and conversation goes a long way for the soul. K is the first person I have really talked to about the difficulties I have living with this. Not even my family can understand like she does. Not even J can understand the daily struggles. But K does, in a way that no one else ever has.

It is deep comfort to know that you have someone that understands you, really understands what your life is like, and have that same person also care about you. I have never experienced anything quite like the conversation I had with K that night. It is rejuvenating. It is inspiring. It is fulfilling. It is so many things that I thought I would never find. I am not alone in this fight. We are not alone in this fight.

While K does not have the same thing I have, we share an understanding that neither one can find in many places. I now have someone that I can send a text to on a bad day, someone I can call when J just doesn't understand, someone to rejoice with me on a good day, someone who has my back. And that, is an amazing feeling.

I encourage you to find a support group, or at least a support person other than a family member, spouse, or significant other. I have struggled for years to find a support person and the support groups I found weren't really very supporting. K listens to me, complains with me, gives advise and tips, and I listen to her, complain with her, and give her advise and tips. It is so important to have someone who understands on a deep level, who not only sympathizes with you, but has the ability to empathize with you as well.

If you don't find a support group online and can't find one in your area, talk to your doctor or your church. They may know of a group or even a specific person that is interested in the same thing.

Love the snow covered valley floor. God's artistry is breathtaking.

But You Don't Have to Look Sick

I hope you all had a very Merry Christmas season. As many of you I'm sure, mine was busy. And with busy comes flares. 

Flares surrounding the holidays are common for those with FMS, but more than that they are frustrating. The most frustrating. This season is supposed to be filled with fun, love, family, friends, being with people...and all I want is to crawl into bed. 

My holiday season started several weeks ago when my brother moved from one side of the country to the other. He towed the little trailer filled with all his belongings behind his little car all the way from coast to coast across this big country. To say I was stressed and worried is an understatement. 

In addition to that, working in retail during the holidays means chaos. Not organized, livable chaos. But the uncontrollable, unreliable, and terribly horribly busy and hectic chaos.

Just these two things alone can cause crazy flares. For the most part, however, I was doing okay. That was until the snow. Snow is pretty...and cold, and slippery, and not easy to live with when you have extreme cold sensitivities mixed with a lack of coordination and a tendency to fall. 

Then add Christmas festivities. For me, that meant work, Christmas Eve service at church, Christmas Eve with J's family, and Christmas Day with more family. Stress, time crunch, places to be, people to see, long drive, bad weather...the list goes on and on. 

And last but not least, add our trip coming up on the first. A week long cruise to the Caribbean followed by a full day at Kennedy Space Center and another at Universal Studios sandwiched between two full days of flights. You get the idea, flare central. 

So how do I cope? I live, I celebrate, I do what I want to do when I want to do it, and I take breaks. Breaks and conversation are key. One of the beauties of the holiday season is that people want to sit and talk. When I'm on the brink of a flare, I can sit and chat with one of the many people who are there and want to sit and chat. Its the easiest time of the year to actually educate people on what it is that I have and how it affects me. It's amazing how just talking to someone and reaching a place of some understanding brings such a sense of relief. The pain my not go away, but the burden of talking to someone, having one more person who has some bit of understanding, is relieving in one of the greatest ways. 

This year I had the pleasure of spending some time with J's mom, who is also suffering from some sort of pain disorder, though she doesn't yet know which. In spending several hours with her (something I hadn't done one-on-one), I realized that it doesn't matter what it is that we have. Just knowing that the person next to you suffers from something invisible too and understands the struggles you go through is, well there really isn't a word for it, but comforting may be the closest word I can think of. Its a comfort to spend some time talking with someone who doesn't constantly remissness on the fact that while you don't look sick, you in fact are. Its is comforting to not have to explain that you are in pain at this very moment. It is comforting to have someone understand why you are shuffling across the icy parking lot, because she is too. It is comforting.  

What I learned this year is that you don't have to look sick. I don't have to look sick to ask for a break. I don't have to look sick to start a conversation. I don't have to look sick to find someone who understands me. 

And on the flip side, I don't have to look healthy either. I don't have to look healthy to enjoy my holiday. I don't have to look healthy to stay busy. I don't have to look healthy to spend time with people I love. 

The fact is, I can just be me and do all these things regardless of my having FMS. I had one of the best holiday seasons' regardless of having more flares this year than ever before. 

And So it Starts Again

New insurance, new doctor, and an attempted new diagnosis...

I am so so very tired of seeing new doctors who seemingly think they should give me a new diagnosis every time I walk in the door.

Let's back track to a couple years ago when I made the decision, with God's guidance, to move from my comfortable and safe home, school, and doctors to start new in a town 10 hours away. Over the years I have had many ups and downs and the Fibro has come and gone in various stages of remission. With that, paired with my decision not to medicate anymore (because the side effects were worse than the flares), I hadn't been seeing a doctor for the Fibro regularly. They weren't doing anything for me anyways and I thought I was better off without them.

Since then, I've had various odd and random symptoms that seemed to have no explanation. I was seeing a doctor whom I liked very much. He listened to me, took time with me, and respected the fact I didn't care to see a doctor who would just prescribe medication to cover the symptoms because they can't find a curable source. As fate would have it, he moved away and left me to see yet another new doctor. This doctor, didn't listen to me, didn't take time with me, and didn't even believe in my diagnosis. Long story short, I didn't go back to the doctor because I didn't want to see him. Until now.

Its been time to see a doctor again for some time. The symptoms have been more frequent, stronger, and harder to cope with. I can't always do it on my own by staying in bed or lounging on the couch. I am no longer a teen calling in sick to school. I have work, bills, responsibility. So I armed myself with as much information I could to disarm any speculation this non-listening doctor might have.

I brought with me a self written list of symptoms and triggers, a print out of common symptoms of Fibro-mine highlighted in orange, and a list of doctors I had seen complete with their specialty, address, phone and fax numbers. I wanted to see another Rheumatologist, one like the doctor who has fist diagnosed me. One who listened, cared, and respected.

Quite to my surprise, this doctor I loathed going to, did take some time with me, did listen to some of what I had to say, and did give me the referral I requested. But, and there is always a but, he also requested more blood work, more documentation, and more time. They always want more, and don't get me wrong, there are times I also want more. I want more pain free days, I want more information, I want a cure. But there are also times I don't want more. I don't want more tests, I don't want more medications, I don't want more doctors with more opinions. I want to live my life.

I did the bloodwork. What's another couple pin-pricks when you've already had countless blood panels, nerve conduction tests, MRIs, X-Rays, and a plethora of other invasive testing done over the years? These two tests; Lupus and Arthritis. We will see the results in a couple of days, but I would venture to guess they are going to turn up negative, as they have every other time I have had these tests done.

I am not overwhelmingly happy with being another doctor's pin cushion, but if it gets me closer to the answers and help I need, then I will of course continue with the testing.

But when does this end?

When can I get on with my life?

This is a picture taken at The Blodel Reserve in Washington, from my trip this past summer. It perfectly represents how living with fibro feels. Surrounded by God's beautiful creation, a once sturdy and strong bench stands on the sideline watching from a distance. 

The Inevitable Embarrassment

It happened, again. I tripped, I fell, I couldn't get up, and plenty of people saw it.

When talking to doctors, friends, family, coworkers, or the random stranger you struck up a conversation with, attempting to explain the embarrassment of falling in public is near to impossible. Most shrug it off. "We've all had our share of embarrassing moments." I can't tell you haw many times I've heard that exact phrase...and from well meaning people! The problem is, its more than just an "embarrassing moment," and further still from the ones we've all had our share of.

How many 20 year old's do you know of that trip, fall, lose balance, or superman it regularly? In places such as work, home, the supermarket, climbing stairs (especially after a long movie at the theater), walking the neighborhood, getting out of the car, or other regularly visited places? And even more, how many of them are unable to pick themselves back up; and I'm not talking about the "hahaha that was so funny I fell and can't get up because I'm laughing so hard please help me back up" moments. How many of those 20 year old's fall when no one is there to help them back up?

I think the worse part for me isn't even the embarrassment, which is pretty bad when you have to thank a complete stranger for picking you up and attempt to explain to them you didn't suddenly pull a muscle or break your leg in thirty seconds or less. The worse part is the fear.

What if I fall at night when no one is there to help me back up? What happens if I fall in a parking lot and no one sees me? What if I fall on a hike and no one can hear my calls for help? What if people don't believe me and refuse to help me because I look able bodied? These are not normal concerns of a healthy 20 year old. But, then again, I suppose I might not be classified as a healthy 20 year old.

Luckily this last fall was not one of the impending dooms I fear, it was just embarrassing. While running around the store completing one of the many tasks I have on my plate at work, I tripped, fell, super-maned, flung my binder and all its contents, and sat. That one hurt. While assessing the damage and contemplating how long it would take to recover from this now most recent fall (and flipping the imaginary signs in my brain back to "one day with no accidents") I realized someone was watching me. Great. "Are you alright sweetheart?" said the probably 70 year old veteran picking up the contents of my binder. "Oh, yeah I'm fine, Thanks for getting that for me." "Mhmm..." He was catching on. I could see the expression on his face changing. It had been close to 30 seconds and I was not getting back up. That's when the most embarrassing part of all occurred.

That 70 year old veteran, the man I, a 20 year old should be helping up, grabbed me under the armpits and stood me up with a much unexpected strength and force I was tempted to fall right back over again. A 70 year old was more able bodied than I.

While this is not the first time I have fallen, this was probably one of the more eye opening experiences I have had. I am disabled and I am learning to accept it as such more each day; though I am still unwilling to give up my fight, accepting myself and the difficulties I face make living with this syndrome a little easier.














Here is a picture of our recent snow fall mixed with the still existing colors of fall.

Extreme itch in the night, and the repercussions the day after...

Two nights ago I experienced a brand new symptom. While new symptoms are, well, not new, this one was to a whole new level. After tossing and turning for many hours, which I do most nights, I awoke with the most aggravating, burning, itch I had ever experienced. I was sure there were small creatures roaming the forest of my head. No matter what I did, there seemed no relief for my poor scalp, and in turn for my poor fingertips. Upon inspection, there were in fact tiny white speckles throughout my hair...it was lice. I had no doubt. So I did what any reasonable 22 year old do upon such a realization at 3 am, I called my mom to tell the news.

After discussing the issue in great detail (I will spare you), I took a shower and began cleaning the house in a frenzy. Doing anything in a frenzy is a great mistake when you have fibro, and this was no different. I have no idea how much I got done, but I soon fell asleep on the floor. Mistake number 3. When I woke up many hours later the stiffness in my joints prevented me from getting up, laying on my back, or stretching. I would have to crawl to the couch and recover there. The more I woke, the more I realized I had done a terrible, terrible thing. Burning, scabbed scalp, terrible sleep, and stiff joints. So much for accomplishing anything on my day off!

That is when I remembered the lice, oh the lice! Luckily, there are no creatures roaming the forest of my head. Instead just the product of dry winters, itchy-sensitive skin, a little dandruff and no sleep. Crisis adverted.

While most people would get on with their day, I was stranded. instead of cleaning the house I made phone calls, paid bills, and attempted to get dressed before I went out, J and I had a date. We were supposed to go ice skating at the local rink, walk downtown to see the Christmas lights, and then warm up with cocoa and a movie. Well, as I'm sure you can guess, none of that happened.

Instead we stopped at a couple stores before grabbing the guns and going shooting. Surely I could put a few rounds through our targets. Think again. With temperatures hovering somewhere around 40 degrees, I could barely stand let alone hold the gun to shoot it. J did most of the shooting. After just a couple minutes outside of the heated car, my hands were searing red with pain and quickly turning blue and purple, clearly colors J's hands were not.

It was then that I learned yet another thing about my disability, not everyone experiences extreme pain when they are cold. Sure, we all get cold sometimes, and I already knew I was colder than most; but what I didn't realized is that not everyone feels pain every time they are cold. The two are not synonymous.

We did finally make it back to the house for hot cocoa and a movie, but unfortunately much sooner than we had hoped. I was wiped, cold, and in pain. We had to turn in early.

This is far from the first time my disability has impacted our dates, or my productivity. Even now, I am recovering from the ordeal two nights ago that started it all.

View of the snow covered valley from shooting. God's beauty is simply breathtaking!