A day in the life of Fibromyalgia.

It's nearing my bedtime so this will be a short post (lucky you!) ;) I apologize for the absence in past months as I've been dealing with the loss of a job and trying to really find myself again. But that's for another time. 

If you don't know already, I suffer from Fibromyalgia. Before any of you start in with the "are you sure?" and "Have you tried eating toothpaste standing upside down while avoiding gluten for 26 days and eating ripened emu eggs?" ETC let me tell you this. YES I've tried it all. I'm still trying MANY methods to ease the symptoms. But THERE IS NO CURE. No propaganda/conspiracy theories please. I've heard all about those too. Just read and learn.

I REALLY appreciate your concern and want to help. But let me be clear. You do not suffer from this. You are not my MANY doctors that see me monthly for this issue (and they are trained much more than any of us, let's be honest). However, it gets VERY old fast hearing these "cure all" things that someone Googled or looked up on Wikipedia.

Here are some things that CAN help YOU understand people like me with this condition. I won't get into my other health issues on this post, but here's a brief inside look to educate you on what we go through:

A MAJOR personal favorite of mine:  http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

TIPS/FAQ:
1. LEAVING: If I'm in a public place and say I have to go, it's 99% likely that IT'S NOT SOMETHING YOU'VE DONE OR SAID TO OFFEND ME!!! I don't feel well. Rather than having to answer the CONSTANT questions from everyone and their aunt's dog's best friend, keep this in mind. It's nothing against you. I HATE that I can't be active like I once was; but this is the best I can do. Just be polite and bid me adieu. The sooner I get home to rest, the better off I'll be. It's embarrassing and makes me feel like I'm ruining everything for everyone (not to mention exhausting with all the explaining to everyone) having to answer people when they ask "Why are you leaving?" constantly. Aside from that, maybe I don't want to go into a long rant about my illness in front of everyone. Yes I put it here, but this I can do in my pajamas at home. Big difference.

2. "You're not always sick" "But you were fine yesterday/the other day etc!" YOU'RE RIGHT!! There are times when I'm SUPER active and able to get a LOT done. Many in the Fibro world call this Fibromaniac. This later comes to haunt those of us who live with the illness. Example: Saturday, I sleep in, have had plenty of rest and actually have ZERO energy because my body is trying to catch up from the week of work, running errands and everything else. I've had no time to myself and am exhausted. I'm a blob to say the least. I still function. Then Sunday, my body has FINALLY started to "catch up" to being as normal as possible and I over exert myself because there is SO much I want to do. So I end up running to the store, cooking, cleaning, gardening (those weeds were starting to meet the neighbors they were so damn tall) and do laundry. I finally sit down and I'm still fine. Then the next morning comes. OH. DEAR. GODS!! What marathon did I run while being run over by 1,000 clowns on unicycles afterwards?? Shit. I have to go to work and be productive.

3. "But aren't you on medication?" Yes and thank science for it/them. If not, I'd happily live in a tent in a field with my cats in the mountains and you'd never see me again.

4. "What IS Fibromyalgia?" Here's the brief version and links to check when you get a minute (even just to skim them). It's a vicious cycle (see picture below)...
Definition:  http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/definition/con-20019243
Causes:  http://www.mayoclinic.org/diseases-conditions/fibromyalgia/basics/causes/con-20019243

 


I appreciate you taking the time to read and learn about this!!

Thankful

I wrote this a while ago in my phone and luckily emailed it to myself the night before my phone was lost in Baltimore. I've been meaning to post it, but I've been really busy with school since I'm gearing up for graduation. 

 

 I am so lucky. Blessed. Looked upon and graced.  Whatever you call it. 

In my life I have just that: life. And very aspect that accompanies it.
 
I have a safe place to live, water, food, a job and a running car.
 
I have two sweet fluffles that sleep with me each night that love me, each with random sweet (and stubborn) personalities that make me laugh.
 
I have a family who has come together under all I've been through and checked on me, loved me and guided me through my hardest hours as of late.
 
I have friends who have prayed for me an checked on me continuously- letting me know they are there for me day or night to help with whatever I may need.
 
I have a boyfriend and his family who have expressed deep concern for me- even among their own daily issues. A man who not only knew going into the relationship that I had health issues and would be surgery (and possibly end up in a wheelchair later on due to what may or may not come with other health problems yet to be addressed), but stood by me nonetheless. He had catered to my every need, helping me walk to the bathroom, out of bed, getting water so I can take medications, going to the store for me, helping care for my cats because I can't bend down to feed them and more. And through all this, he still tells me I'm pretty. I only wished I'd met him 10 years ago- oh the glory that would have been! But I'm not sure if have realized what a great person I had before me at that time - still needing to weed out those who had yet to wrong me. I still lose my breath when I look into his eyes- and he doesn't even know what a catch he is or how gorgeous he is (lucky for me!) his family has opened up their arms wide for me, expressing well wishes and I couldn't be more thankful for all of them.
 
I also have the opportunity to get an education, to help others and to get medical help when I need it.
 
Is my life perfect? Of course not. My family, friends and boyfriend all have our issues w one another - we don't always see eye to eye on things. I have bills I can't pay an will have health issues are unable to be "solved" or "fixed"; BUT I am still blessed beyond compare.
 
If you are reading this, you know why. YOU are why. In my last surgery I made a will in case things went south. Because you are reading this and not at my funeral hearing my last words, THAT is why I am so thankful.  I don't have it easy- I never have. But damn I have a lot going for me. All because of caring and considerate people in my life- because of those I have been fortunate enough to come in contact with some way or another- because of YOU.
 
And for that, I cannot express enough gratitude and cannot be humble enough to show you my true emotions.
 
I am thankful yet again, to be given the opportunity to continue life- no matter how hard. I still get to LIVE.
 

How to prepare for a major life change in one month

So recently I got some news that literally knocked me down from my doctor.

I held it together until I got to my car and left- then once on the highway the numbness faded and I allowed myself to cry.

I went and told my boyfriend on the phone, allowing my vulnerability to succumb me to more tears and heartache. I stayed in bed for days, cancelling work and not eating.

I started back to therapy immediately, which I hadn't done in years. THAT is how major this secret is. And now, I'm going to put it out there for everyone to read. Why? Because I honestly believe that what I have experienced in my life has given me the opportunity to help others. It's one of the ways I cope with my depression that has stemmed from a long line of genetics.

You see, when something bad happens most people will say something stupid like "Look on the bright side..." and then tell you why you shouldn't feel the way you do and to "perk up" instead. Those people may have a point, but negating your emotions completely isn't healthy. This is one of those times where I need time to mourn the loss of my body changing entirely and the outcome of my future changing on a permanent basis. Those who have lost something without it being a decision can understand where I'm coming from: looking on the bright, while somewhat helpful at a point in the future, does NOT help when you need to release other emotions that are causing an insane amount of turmoil in your soul. You have to express yourself how you see fit.

Needless to say, because of one man's decision to harm me when I was young I have been dealing with Cancer off and on.  It has now come to the point where at the age of 30 I found out I was going to need a complete hysterectomy. I have no money to freeze eggs and it is too late to do that now. I have no children. While I have other health issues that have made me consider not having children because of fears I would be a bad mother, that was at least an option I had yet to pursue.  Now it is decided for me. 

"Oh! But you'll be healthy" or "Oh you can adopt!" or "God doesn't give you more than you can handle" does NOT help how I feel.  It does NOT allow me to feel that you are truly letting me grieve and accept this news in my life. 

I will never see those lines on a pregnancy test.  I will never feel a life growing inside me, kicking and moving.  I will never see those pictures on an ultrasound. I will never have a baby shower, pick a child's name or register for baby gifts.  I will never cradle them to sleep, hear them laugh or watch them grow.

Allow me to be sad. Allow me to express my emotions until I am ready to be "back on track".  Allow ME to crumble a bit in your arms and cry.  Allow me the honesty of what is really happening in MY life.  Please give me your support.  You do not need to completely understand what I am dealing with to be a friend for me.


I ask you not to gossip and make up your own ideas of why this is happening to me (religious or whatnot)- I do ask that you come to me with questions and I will answer them if I am strong enough.

This surgery will be accompanied by other things being taken care of at the same time- which will make it so I can't work for a while.  My recovery will be a long one to say the least.

HOLIDAY RETAIL COMMON COURTESY RULES TO FOLLOW:

I posted this on my Facebook, but thought I should put it up here too for future reference.

HOLIDAY RETAIL COMMON COURTESY RULES TO KNOW:
1. If there is a long line, have your payment ready, including coupons. MOST places don't let you use more than 1 coupon per transaction. NO we cannot do multiple transactions with a long line. Arguing with us doesn't help. If you need gift receipts tell us at the BEGINNING of the transaction, not AFTER you've paid.

2. If you have a lot of people shopping with you, please have them wait AWAY from the line. Having 4+ people in line just for one person's purchase makes the line longer for no necessary reason.

3. SAY PLEASE AND THANK YOU. Retail workers are paid very little and have to put up with a lot.

4. Don't just throw things where you want because you're lazy. Employees have to find and return them to the right place, making them stay at work even later than they should.  AT LEAST take them to the front counter or nearest Customer Service.

5. SMILE. Seriously, it's the holidays. Going up to the register/employee and being an expressionless prick and just acting pissed off because we are REQUIRED to ask if you'll donate to whatever cause is going on is uncalled for. Make our jobs a little happier by being a decent human being to us.

6. If you're teaching your child the importance of money and having them pay their own way that's great. PLEASE be there in case they don't have enough OR need help counting a bit faster if there is a long line. Employees get fussed at by management if lines don't go down at a fairly decent pace.

7. PLEASE know what you're coming to shop for if you want to ask for assistance. In other words, don't walk into a bookstore and ask for help looking for a book but only know the color of it and that there is a person on the front (this seriously happened to me) and not know what it's about, the author or anything else.

8. KEEP YOUR KIDS UNDER CONTROL. Holidays are stressful for everyone, but letting them roam around and just continue on your regular conversation while they harass other people is incredibly rude.

9. KEEP YOUR OPINIONS TO YOURSELF about how employees look (or at least until you leave the store). Telling someone that they would "look nice if they had their tattoos removed" or you believe someone would "look great with a little more work put into their makeup" or "You can always get your tattoos removed" is atrocious. DID YOUR PARENTS TEACH YOU THAT?? If nobody asks your opinion, then shut up.

10. Don't get all pissy if someone wishes you Merry Christmas and you don't celebrate it. Either way, they're telling you to have a happy day. It isn't like they're condemning you to hell by saying those words.

YOU are NOT ME.

So I bring this up for those of you who do or don't know.
1. PLEASE be careful about tagging me in things related to what I may have expressed to you in private of what I am going through. I don't want everyone knowing my life (believe it or not, there is a LOT more going on than I ever put here).
2. PLEASE do NOT assume that chronic illnesses are a "quick fix" just by something you've heard recently. The 4-5 doctors I see each 1-2 months (if not monthly) and I have worked VERY hard to get me where I am today.
3. Unless you are PERSONALLY a doctor, or PERSONALLY have the illnesses I do, I don't want your conspiracy theories (oh healthcare doesn't really want to take care of you etc or you'd be "fixed") or the "If you just ate differently or did xyz things would be fine".

I appreciate your concern, BUT you are not my doctor(s).  You are not me. It gets VERY exhausting hearing someone say "Oh but I heard on the news" or "Oh I read that blah blah is happening now" - which is great, but still like saying there is a cure for a great disease BUT there is still a process it has to go through (FDA trials etc,  filtering down through lawyerspeak, drug companies manufacturing enough, doctors actually putting their faith in something "just proven" and on).

I DO appreciate your advice, but sometimes when you're actually IN this position day in and day out it just gets seen as obnoxious like I'm not doing everything in my power to feel better. TRUST ME, I would literally take 5 years off my life if I knew I could be pain free for the next 25 years. No joke.

I'm just asking you to see things from the another point of view is what I'm getting at. Some things are a very simple fix. Multiple illnesses combined with one another is not one of them. Be understanding. Get better educated (Wikipedia is not necessarily "educated" since the sources aren't always valid- try actual scholarly sources). Be open minded. Realize you don't have the answers on how to "fix" everyone or everything. Be kind.

Nelson Mandela vs. Chris Kyle = flag at half mast

Before ANYONE gets started, just know that I DO think Nelson Mandela is an incredible person. He conquered so much, did not remain bitter (as I would have been) after years in jail and still rose to the top. He was a force to be reckoned with in terms of doing what was right and still maintaining his composure. Obama asked the country to have the flag flown at have mast today to honor him. He was not part of this country, but he was still an amazing man- and that I can agree with.

I also want to be incredibly clear here: I HATE POLITICS. I am not stating who I voted for here or any political affiliation. I am just expression an opinion of general disgust. You'll see why. 

Now let's flash over to the United States where we have Chris Kyle, an incredible U.S. Navy Seal (you can read more about him and the work he did here:
http://heroesproject.org/chris-kyle-u-s-navy-seal-chief-seal-team-3/) not only served his country, but volunteered to help soldiers returning from war to try and adjust back into the civilian world. Often times these men and women had PTSD or "viewable traumas" as I refer to them where they had missing limbs or other physical damage from war.

Chris Kyle continued to serve even AFTER he had already served his country. Yet, Obama did NOT have the flags flown at half mast for him and did not address the nation for losing such an integral part of winning the war on terror. Yet, the President did address that his condolences were with Whitney Houston's Family after she passed away.

Christopher Scott "Chris" Kyle was a U.S. Navy SEAL who was known as "the Most Lethal Sniper in U.S. Military History" (a phrase which was used in the title of his autobiography). Kyle, a Texas native and resident, was shot and killed on 2 February 2013 at a Texas shooting range, and he was buried in the state capital of Austin. Texas governor Rick Perry issued a statement expressing his condolences to Chris Kyle's family "and the thousands of service members that were his extended family," but despite a good deal of public support for the gesture, Governor Perry did not issue a proclamation directing flags to be flown at half-staff statewide on the occasion of either Chris Kyle's memorial service or his funeral. (As noted above, that honor is a traditional one for those who have died while active duty members of the armed forces, but Kyle did not die on active duty, having left the U.S. Navy in 2009.)
Read more at http://www.snopes.com/politics/military/chriskyle.asp#VJFHoAZaFDK3jC73.99

Yes, yes I understand that in general it is up to the governor of the state if the flags are at half mast generally, but the President IS ABLE to make that call as well.

Here is my point and question: Why are we depriving respect for those in our country who deserve it the most after they have given so much? Why are we not showing future generations the importance of saying goodbye to a fallen soldier after all they have done for our great nation? Come on America, we can do better than this. Shame on us.

Christopher Scott "Chris" Kyle was a U.S. Navy SEAL who was known as "the Most Lethal Sniper in U.S. Military History" (a phrase which was used in the title of his autobiography). Kyle, a Texas native and resident, was shot and killed on 2 February 2013 at a Texas shooting range, and he was buried in the state capital of Austin. Texas governor Rick Perry issued a statement expressing his condolences to Chris Kyle's family "and the thousands of service members that were his extended family," but despite a good deal of public support for the gesture, Governor Perry did not issue a proclamation directing flags to be flown at half-staff statewide on the occasion of either Chris Kyle's memorial service or his funeral. (As noted above, that honor is a traditional one for those who have died while active duty members of the armed forces, but Kyle did not die on active duty, having left the U.S. Navy in 2009.)
Read more at http://www.snopes.com/politics/military/chriskyle.asp#VJFHoAZaFDK3jC73.99

Christopher Scott "Chris" Kyle was a U.S. Navy SEAL who was known as "the Most Lethal Sniper in U.S. Military History" (a phrase which was used in the title of his autobiography). Kyle, a Texas native and resident, was shot and killed on 2 February 2013 at a Texas shooting range, and he was buried in the state capital of Austin. Texas governor Rick Perry issued a statement expressing his condolences to Chris Kyle's family "and the thousands of service members that were his extended family," but despite a good deal of public support for the gesture, Governor Perry did not issue a proclamation directing flags to be flown at half-staff statewide on the occasion of either Chris Kyle's memorial service or his funeral. (As noted above, that honor is a traditional one for those who have died while active duty members of the armed forces, but Kyle did not die on active duty, having left the U.S. Navy in 2009.)
Read more at http://www.snopes.com/politics/military/chriskyle.asp#VJFHoAZaFDK3jC73.99

Christopher Scott "Chris" Kyle was a U.S. Navy SEAL who was known as "the Most Lethal Sniper in U.S. Military History" (a phrase which was used in the title of his autobiography). Kyle, a Texas native and resident, was shot and killed on 2 February 2013 at a Texas shooting range, and he was buried in the state capital of Austin. Texas governor Rick Perry issued a statement expressing his condolences to Chris Kyle's family "and the thousands of service members that were his extended family," but despite a good deal of public support for the gesture, Governor Perry did not issue a proclamation directing flags to be flown at half-staff statewide on the occasion of either Chris Kyle's memorial service or his funeral. (As noted above, that honor is a traditional one for those who have died while active duty members of the armed forces, but Kyle did not die on active duty, having left the U.S. Navy in 2009.)
Read more at http://www.snopes.com/politics/military/chriskyle.asp#VJFHoAZaFDK3jC73.99

Friends being stupid

Recently I told someone about a few instances regarding some friends and their decisions lately.
These "decisions" happen to revolve around sudden divorce or breakup and getting remarried again. The other person going from one guy to another, getting engaged quickly and mooching off of them like crazy for a few weeks to a month or so (literally) and then breaking up with them to go to someone else and the cycle starts all over. With each of these people it's always a "whirlwind love" and each time they "swear" that "this time I know he's the ONE" blah blah blah whatever. 

Here's my issue: You are dragging other people through all of this proverbial shit in the meantime to experiment with whatever emotional baggage you're dealing with. The remedy? Simple: TAKE TIME TO BE ALONE. Figure out what is best for you after a breakup. Find yourself again and just be.

Unfortunately, neither of these women realize they have developed a dependent personality and suddenly "need" a man in their lives either to define them or take care of them. Have I tried talking sense into them? You bet. I've tried being nice, tried suggestions only to get screamed at for not being supportive. I've tried being blunt and saying  "I told you so." and "This is what you said last time" and that didn't work either. Other friends have also tried to intervene. Sadly, it's a train wreck that keeps getting back on the tracks after each collision. At some point you almost have to admire the idiocy of attempting to continue it over and over and expect different results really.

Now back to the person I told all this to.
His response: "Where do you find these train wrecks?" And it is a very valid point. I did have to remind him that they weren't like that when we first met AND we all have our "moments" in life that make us look like complete whack-jobs in someone's eyes.  Hell, I know I have an ex or 2 out there to this day vouching that I should be institutionalized. 

Here is the difference though: WE FIX OURSELVES rather than getting worse. We admit (at some point or another) that something is wrong and needs to be adjusted. We ask for help and work through our issues rather than just trampling over people and pretending things are fine. THAT is not healthy. And doing all this with KIDS in the mix, going from one relationship to the other?? Why not just attach a damn snorkel to your kids face, a rope around their waist and the other end to a car while you drag them through the proverbial mud of your shitty relationships and tell them to learn to tread the crap in life that you can't stop to help get yourself out of. How are you teaching them anything?? You aren't. Way to go.

Get your shit together and think of your child first like you said you would at some point in your life. If you don't have a kid, then stop acting like an idiot with other people's hearts in the first place. THINK OF OTHER PEOPLE.