Fall is in the Air

Some one posted this picture on an FM forum I belong too and I just fell in love with it.  I just absolutely love Fall. 


Enjoy!

Suck It Up

So I admit it, I have been in a "fibro funk".  It's been physically and emotionally, but I think I am finally pulling out of it.  I had been going through so much pain there that it then starts wearing on the emotions.  And then IT happened...we were at a church bbq and I seemed to go downhill from there. 

I was talking casually with a friend and her husband inquired why we hadn't been in church for a while (well, like forever).  I started explaining that I hadn't been doing good and then he said it.  He told me I just needed to "suck it up."  It caught me so off guard that I pretty much just ignored it and kept on talking with his wife. 

After we left and I began processing it all, I really started getting upset.  Yes, over the years that have been insensitive comments and such, but none this rude.  I know this guy is a macho, don't be a sissy kinda guy and I can definitely fault him for being ignorant.  But it still affected me. 

Like I said, I am doing better know.  I had some great friends come to my defense and offer to beat a few people up (thanks friends, it meant the world to me).  It also reaffirmed that some how I need to continue educating people on what FM is, but some how not shove it down their throats.  It's also important to educate people that invisible illnesses do occur and you can never judge a book by it's cover.

Fibro Friday: National Invisible Illness Awareness Week

National Invisible Illness Awareness Week

After reading another FM blogger, I just found out that September 13th - 19th is National Invisible Chronic Illness Awareness Week. In her blog, she answers if she would rather have a visible illness or a non visible illness.  And I think I agree with her...I would prefer a visible illness.  If you have a cast on a body or a major scar, crutches, a wheel chair, etc. people can see it.  They can understand a little more because it is made more real to them. 
Well not with FM, people question how "bad" you are really feeling.  They think that if you just take a different medication or exercise or eat differently or whatever that it will make things all better.  I have been on the strictest drug regimen that I have ever been on and I am still having bad days.  I am used to hiding most all my pain and emotions.  I am great at giving off a nice smile and facade. 
So here's to all my fellow people that suffer from an invisible illness.  You are not forgotten and I have your back.  I am right where you are at and right there along side you to support you.

S. Africa Part 1

ML and I were blessed with an amazing trip to S. Africa (thanks mom and dad).  We were going to my brother's wedding (he married a S. African girl).  Our 3 Loves stayed with family, so ML and I had a kid free trip.  (Our 10 year anniversary is in October so we used the trip as our anniversary trip too).


It was an AMAZING trip.  We can't say anything different.  We met so many amazing people, had some amazing experiences, ate some different food, and will always remember it.  I wanted to highlight some of the best stuff, so here it is.

People

We met our new SIL for the first time (yes, I know a different situation, but it's all good). We really feel like we have a whole new side of the family now. They were just the nicest people. Most everyone of the S. African people we met were very friendly and welcoming.

 

This lady was going to tell a friend that her relative had passed away.

My parents and I.

Animals

ML and I were absolutely blessed with all of the animals we saw.  We were the only ones to see the Big Five in one day (Elephant, Leopard, Buffalo, Lion, Rhino).  We have learned that this is a very rare experience and I personally believe the Lord brought the animals to us.  We went to Kruger Park and spent 2 nights.  And that's where tons of fun was had.  We saw animals as we drove through Kruger Park, went on a night safari, and visited the Lion and Rhino Park. 

 

The elephants were awesome.  We saw babies, we heard them breaking trees and branches and saw them eating.  We heard them talking to each other.  It was an amazing sight.

The buffalo's were huge and dangerous.  They would just stop and stare at you.  Seeing them in a herd crossing the stree,t in front of your safari truck, in the dark was awesome.  They just stood there and stared us down.  Thank goodness they didn't charge.

I was the one who spotted a set of golden eyes.  It turned out to be a female leopard (which seeing a leopard is supposed to be another rare sight).  She walked out from under the tree to the road and just walked in the middle of the road.  Our safari guide turned the truck around and we followed her as she walked.  She eventually went back into the bush and was gone.

The lions were hard to find and so was the rhino.  They are all the most amazing animals ever.  We also saw many giraffes and impala's were everywhere.  Another rare siting, we had was a hippo out of water, which was so cool.

The best animal experience EVER was playing with lion cubs.

They were so much fun.  It's an experience we will never forget.  They aren't as soft as you would think and boy are they strong.

As soon as ML layed on the ground to play with a female, the male crawled right up on his legs and back. He just played with his pants and had fun.

And boy are their teeth strong, even at this young age.  I just looked away from him for a second and he had my wrist in his mouth.  It made a mark, but wasn't strong enough to draw blood.  But boy, it still hurt.

In Kruger Park, we had so much fun sitting around the campfire for 2 nights.  Hyena's would visit us, and one night we decided to entice them to come close to us.  The next morning there was a wart hog family that decided to visit us.  We were able to touch them and they ate out of our hands.

Food

We had some great food, but it was definitely different. Some of the meat we ate was impala, springbok, and lamb.

Wedding

Of course, we can't forget about the wedding.  Hands down, I think it was the funnest wedding we have ever been too.  My brother and SIL (who was the most gorgeous bride ever) just wanted it to be a party and for everyone to have fun.  Being a part of some of the S. African wedding traditions was very cool.  Their dancing is so much fun and the music was pretty interesting.  The photographer had us doing some crazy stuff, especially in our red stiletto's.  (We were running through the forest and traipsing through burned grass.)  This was my first wedding I had ever been in so it was pretty exciting.  It was just a fun morning of getting ready and getting our hair and make up done.

 

We were so sad our girls had to miss this, but ML and I will never forget this trip.  It was a once in a lifetime trip.  It helped renew family values and helped renew our marriage.  We are closer than we have ever been.  We will be talking about this trip for years.  We froze our butts off, but that was way better than the heat in AZ.

We had fun shopping and brought back some really cool pieces for our house.  I got this most amazing coaster set out of a dark wood and the big five animals are carved all over it.  I also found a matching, large bowl that is hand carved too.  I love this red platter and also came back with tons of hand made jewelry.

Fibro Note:  Going from heat to extreme cold put my body into shock, but in a good way.  I also know the Lord had a big part to play in it too.  I rarely had pain and was able to have enough energy to get me through each day.  ML was really surprised at how well I was able to stay up with everyone.  I truly thank the Lord for giving me the relief that I needed to get through this once in a lifetime trip.

Revelation

I had a revelation or an epiphany:  

I HAVE A CHRONIC PAIN DISORDER. 

Once I found out that I didn't have an autoimmune disorder, I started looking at what I actually have.  And that is a chronic pain disorder.  Yes, I am pretty much in pain all the time.  It's totally true.  I don't know why it took me so long to realize this.  Maybe I just thought that it was an autoimmune thing that happens to have accompanying pain.  But it isn't.  It's a disorder of pain, that happens to come with all the other crap I deal with.

I know this may sounds silly, but this really hit me.  It really opened my eyes and made me realize that yes, I am in pain pretty much 24/7.  Whether it be from my head, to an arm, to a leg, or to my back, I am in pain.  Yes, it does fluctuate between mild to severe, but it's there.

I feel that I now have such a greater knowledge of my own illness and I feel enlightened.

Fibro Friday: Autoimmune?

Whenever I describe what FM is, I would always say that it is an autoimmune disorder.  Well, turns out it isn't.  I happen to be talking to my rhuematologist about it at my last appointment and she corrected me.  I was a little surprised so I decided to do a little of my own research.


All of the websites I googled said nothing about it being an autoimmune disorder (which I swear I saw something one time that did).  What they did say is that people are misunderstood and think that it is. 

 The National Fibromyalgia Association says that:

Fibromyalgia (pronounced fy-bro-my-AL-ja) is a common and complex chronic pain disorder that affects people physically, mentally and socially. Fibromyalgia is a syndrome rather than a disease. Unlike a disease, which is a medical condition with a specific cause or causes and recognizable signs and symptoms, a syndrome is a collection of signs, symptoms, and medical problems that tend to occur together but are not related to a specific, identifiable cause.



Fibromyalgia, which has also been referred to as fibromyalgia syndrome, fibromyositis and fibrositis, is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress. For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.

So there ya have it, I'm just glad I learned this now (after 9 years) so that I can start sharing the correct information.

One of Those Weeks

Philipians 4:6

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God."

Here I am in another bad week/weeks/month.  I am usually very strong emotionally when it comes to all the pain and fatigue, but it usually hits me really hard every couple months.  And I am there.  In too much pain to do anything or plan anything.  No energy to do anything.  Feeling guilty that I am doing nothing around the house.  Feeling guilty that my 3 year old hasn't had any playdates.


But alas, I remind myself that it could be way worse.  I am thankful to have ML home (even thought he doesn't have a job) and he's helping and letting me sit and do nothing.  I'm thankful for my healthy girls.  Thankful we have a house over our heads and food in the fridge.


So today Philippians 4:6 will be my verse.  Don't focus on the negative, all the pain, focus on the positive and be thanking God for the good and the bad.

Rare Am I

So many things that happen to me medically seem to be rare or unexplainable things.  I guess I'd rather be rare than ordinary, but at times it can be so frustrating.  And I'd rather not be as rare as a friend of mine.  Poor thing is always having the most rare and life threatening things happening to her.  (The Lord has given her so much strength to get her through.)

Of course with my Fibro Fog I can't remember all the rare things that have happened to me, but here are a few:

• I can't eat fruit and doctors have no explanation as to why.
• My epidurals always stop working at some point during a delivery and the doctors have no explanation.  They just say this usually doesn't happen.
• I have been battling a rare breast infection (only 1% of biopsies are this infection).  There is not a lot of information out their for the doctors to know how or why women get it or even on how to treat it.

So Rare Am I!  I accept it and live with it.  How rare are you?

Happy Labor Day!

To most Americans, Labor Day is just a day off of work.  But what is the true reason for Labor Day you might ask?

Labor Day, the first Monday in September, is a creation of the labor movement and is dedicated to the social and economic achievements of American workers. It constitutes a yearly national tribute to the contributions workers have made to the strength, prosperity, and well-being of our country.

So take some time to really focus on your contributions to this world, whether you are working or not.  We all have a personal plan for this world and are a great asset.  The only question is: are you living and contributing to your fullest Godly potential?

Fibro Friday: Breasts = A Mess

 Granulo what?

 Granulomatous mastitis is a rare condition in which the breast becomes inflamed, developing a mass of tissue which is sometimes mistaken for a cancerous growth.

Granulomatous mastitis has been taking over my life for that last 2 months.  It started with a lump in my right breast which my breast surgeon wanted to get an MRI, mammogram and ultrasound done on.  It started with a 9 am appointment at the radiology center and ended at 1 pm.  I ended up having all of the above done and then 3 biopsies.  Things were not looking good and they were convinced that it was cancer. 

After a long weekend of waiting, we had great news that it wasn't cancer.  It was a granulomatous mastitis infection.  I was advised to give it some time to see what happens and if it goes a way.  About two weeks later it started shrinking and became somewhat small. (Originally it was massive and when I say massive, I mean about the size of a grapefruit). 

And then 2 weeks ago, it hit.  Another massive infection in my left breast.  I talked to my breast surgeon over the weekend and she got me in to see her on that Monday.  She was surprised/shocked/baffled as to what was going on with my boobies.  She ordered another mammogram and ultrasound to be done (which I will have next week) and wanted me to see a Rheumatologist about treating the infection with steroids.

Luckily, I already have a Rheumatologist and I was able to see her the next day.  She was baffled at the infection and had never heard of it before.  Both of my doctors talked and came up with a plan of action which includes a dose of steroids and then see what happens.

The hard part is that doctors don't know how or why women get it.  It is a rare infection and they really don't know how to treat it.  Research shows that a long course of steroids can treat it, but no where does it say how long of the treatment or what does.  So my docs are just trying to see what works.

So far the steroids seem like they are working, the pain is gone and physcially I am feeling so much better.  It felt like the infection started taking over my whole body and started a major flare-up in the mean time.  For 4 days I was 100% non functional.  I could barely walk, my back was completely out, couldn't use my arms, and my neck and head were in extreme pain.  It wasn't until I had been on the steroids for a full day that I finally started getting some relief.  I am almost done with my steroid treatment, so we shall see what happens.  Unfortunately with this condition it can reoccur quite often.  Hopefully my doctors will get a good treatment going for me and this will become less of a problem in my life.  I want my regular boobies back :).

September Already?

Wow, I can't believe it's September already.  There is so much to blog about, but I have been really sick (which is a blog in it self). 

Usually today I start my Fall decorating.  But not this year.  We are in the process of selling our house and moving.  I really don't want to get all my stuff out and then have to pack it all away.  So no Fall in our current house.  Not sure when we'll move, but maybe it will be in time to put some Fall in the new house.

I guess instead of decorating I will try and update about all of the good and bad that has happened in July and August.

Welcome Fall, bring us some lovely weather!