The Mud and Mire

I wanted to write a fibro update and sometimes I'm at a loss as to how to explain how it has been going. The hard thing for me is that I've always been an optimist. I like to be (and want to be) a positive person. It's hard for me to write about the hard things and feel like I'm bringing anyone down. I don't want anyone to be saddened by what I write about, but I also want to be honest for myself looking back and for others who think this thing is easy if I make it sound that way. Truly, it's complicated and there are steps forward and back. I want to be honest with myself and share how it really is. 

When I wrote my last update, things were seeming to go in the direction I wanted. Literally a few hours after writing that post, I had a "flare up" that threw me for a loop for a number of days. I've had to miss half days from work here and there which really frustrates me. I don't want this to affect me, and the very last thing is for others to see or be able to tell that it gets a hold of me. When I see progress, I want joyfully to move forward without looking back. That isn't always what happens though, there are many things that can bring my symptoms back harder, and I can't always predict what makes that happen.

Through many hard days, I've tried to figure out how to describe it to Nick. One morning a few weeks ago at work, as I went from feeling awful to feeling so much better, a Bible verse came to mind. 

Psalm 40:2
He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand. 

This is exactly how it feels. During the "flare ups" or even on my typical morning, I find myself in a slimy, deep, dark, muddy pit and can't get out. Once I'm lifted out, I feel like I could sing it to the world, conquer anything I want, and I try to live in and enjoy every second I'm out of the pit and on solid ground.

We pray about what I go through daily. I know the Lord is good, He has plans for me, and I believe he'll use what I've been going through for His purpose. It isn't easy as I face this daily, but the Lord has set my feet on His solid ground and I know He is my rock. With fibro, I have ups and downs, but I always know He is with me.

I can say I believe facing these battles has brought me closer to the Lord, needing Him daily. I would imagine Nick might say the same. He is orchestrating this beautiful life and though we face the battles we face, we know He is in this battle, carrying us when we aren't able to walk.

Today's Pinspiration:

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My Weekend as Assistant Mommy

Prepare yourself for a picture overload of my cute {boy}friend, Hudson.

You may remember him in his mama's belly here:

Or when I got to meet Hudson as newborn the following weekend:

The weekend before last, Maggie and Hudson made the trip here and I got to enjoy a whole weekend with these two! It was so much fun to have quality time with one of my BFFs since 5th grade and kiss Hudson's cheeks all weekend.

Photos thanks to Instagram (@eatingexploringandenjoying) and my phone

I took this series of photos the first night they were in town.

I think he just wanted me to pick him up so he could cuddle with me. Or maybe he was tired. Or hungry. He seemed to be tired and hungry quite a lot:) 

I like how you can see me in the mirror's reflection getting him to smile:) The things we do to get babies to smile for photos... 

This was one of his favorite "cool guy" poses.

We went to Good Earth (one of my favorites!) to eat dinner that Saturday night after an afternoon of shopping

I love his Elvis face! OMGosh, I think this is too funny:)

Bread, chips, hummus, and baby toys. I saw the reality of mommyhood when Hudson got sad as we waited for our dinner. We decided we just better go since he was tired and/or hungry and probably wouldn't be too satisfied until he could eat and/or sleep. The waitress was less than thrilled when we asked her to make the rest of our order to-go, but the sweet ladies at a table next to us could resonate and said, "You'll be able to eat a full meal eventually" :) it was very sweet. They also asked Maggie and I if we are sisters which was cute. Being a mom is really hard you guys. 

Mag, we've come a long way since 5th grade:) 

He is just so cute and is such a good baby. I couldn't stop kissing those cheeks and saying goofy things in a funny voice to make him smile.

Evidence that there was a baby {and look at those baby thighs - love!} in our living room. He's watching the TV here. 

Back to the part where I try everything to get that smile- OH so much fun. Also notice, he's using the "cool guy" pose again;)

See enough sweet baby faces for one post? I had so much fun hanging out with these two last weekend in a low key but fun weekend. 

Today's Pinspiration:

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{fibro} Letter to Normals

I had a check-in appointment this week with my fibro specialist ladies. One shared with me the "Letter to Normals". I read it since then and appreciate its honesty. I have more to share and update on how I've been feeling lately, but this letter is enough for now. I also have photos to share of a cute baby boy and his mama we had in town last weekend! 

    LETTER TO NORMALS
by Claudia Marek

Here is my letter written to explain to family and friends what it's like to have fibromyalgia. It won't work miracles: it's hard to understand our illness from the outside looking in.  But it is a start and can open the door to important dialogues. You are all welcome to use it, either as is, or as a basis for writing your own.  Remember that you have a responsibility to tell those close to you what is wrong and communicate as clearly as you can how you feel and what you need.  The best time to do that is when you are not upset!

Fibromyalgia isn't all in my head, and it isn't contagious. It doesn't turn into anything serious and nobody ever died from fibromyalgia (thought they might have wished they could on really awful days!!)  If you want to read articles or books about fibromyalgia I can show you some that I think are good. If you just want to learn as we go along, that's fine too. This is definitely going to be a process. The first step is for you to believe that there is an illness called fibromyalgia and that I have it. This may sound simple, but when you hear about my symptoms I don't want you to think I'm making this all up as I go along.

Fibromyalgia is a high maintenance condition with lots and lots of different kinds of symptoms. There's no way to just take a pill to make it go away, even for a little while. Sometimes a certain medication can make some of my symptoms more bearable. That's about the best I can hope for. Other times I may take a lot of medication and still won't feel any better. That's just the way it goes. I can't control how often I feel good or when I'm going to feel terrible. Lots of people have been cutting new drugs advertisements out of magazines for me and I appreciate the thought, but I've seen them too.  Look at the list of side effects and the few symptoms they help in return.  Even in the best studies those expensive compounds didn't help over half the people who tried them.  No matter how happy the people in the pictures look, there's still no miracle drug available.

There's no cure for fibromyalgia and it won't go away. If I am functioning normally, I am having a good day. This doesn't mean I'm getting better -- I suffer from chronic pain and fatigue for which there is no cure. I can have good days, several good weeks or even months. But a good morning can suddenly turn into a terrible afternoon. I get a feeling like someone has pulled out a plug and all my energy has just run out of my body. I might get more irritable before these flares, and suddenly get more sensitive to noise or just collapse from deadening fatigue. Weather changes can have a big effect on how I feel.  Other times there may be no warning, I may just suddenly feel awful. I can't warn you when this is likely to happen because there isn't any way for me to know. Sometimes this is a real spoiler and I'm sorry. The sadness I feel for what my illness does to those around me is more than I can easily describe.  You may remember me as a light-hearted fun loving person -- and it hurts me that I am no longer what I was.

Fibromyalgics have a different kind of pain that is hard to treat. It is not caused by inflammation like an injury. It is not a constant ache in one place like a broken bone. It moves around my body daily and hourly and changes in severity and type. Sometimes it is dull and sometimes it is cramping or prickly. Sometimes it's jabbing and excruciating. If Eskimos have a hundred words for snow, fibromyalgics should have a hundred words for pain. Sometimes I just hurt all over like I've been beaten up or run over by a truck.  Sometimes I feel too tired to lift up my arm.

Besides pain, I have muscle stiffness which is worse in the morning and evenings. Sometimes when I get up out of a chair I feel like I am ninety years old. I may have to ask you to help me up. I'm creaky and I'm klutzy. I trip over things no one can see, and I bump into the person I am walking with and I drop things and spill things because my fingers are stiff and my coordination is off. I just don't seem to connect the way I should. Hand-eye, foot-eye coordination, it's all off. I walk slowly up and down stairs because I'm stiff and I'm afraid I might fall. When there's no railing to hold on to, it's terrifying.

Because I feel bad most of the time, I am always pushing myself, and sometimes I just push myself too hard. When I do this, I pay the price. Sometimes I can summon the strength to do something special but I will usually have to rest for a few days afterwards because my body can only make so much energy. I pay a big price for overdoing it, but sometimes I have to. I know it's hard for you to understand why I can do one thing and not another. It's important for you to believe me, and trust me about this. My limitations, like my pain and my other symptoms are invisible, but they are real.

Another symptom I have is problems with memory and concentration which is called fibrofog. Short-term memory is the worst! I am constantly looking for things. I have no idea where I put down my purse, and I walk into rooms and have no idea why. Casualties are my keys which are always lost, my list of errands, which I write up and leave on the counter when I go out. Even if I put notes around to remind myself of important things, I'm still liable to forget them. Don't worry, this is normal for fibromyalgics. Most of us are frightened that we are getting Alzheimer's. New kinds of brain scans have actually documented differences in our brains.

I mentioned my sensitivities earlier and I need to talk about them again. It's more like an intolerance to everything. Noise, especially certain noises like the television or shrill noises can make me jittery and anxious. Smells like fish or some chemicals, or fragrances or perfume can give me headaches and nausea. I also have a problem with heat and cold. It sounds like I'm never happy but that isn't it. These things make me physically ill. They stress me out and make my pain worse and I get exhausted. Sometimes I just need to get away from something, I just don't know how else to say it. I know sometimes this means I will have to go outside, or out to the car, or go home to sit alone and that's really all right. I don't want or need you to give up doing what's important to you. That would only make me feel worse.  Sometimes when I feel lousy I just want to be by myself. When I'm like this there's nothing you can do to make me feel better, so it's just better to let me be.

I have problems sleeping. Sometimes I get really restless and wake up and can't get back tosleep. Other times I fall into bed and sleep for fourteen hours and still be tired. Some nights I'lltoss and turn and not be able to sleep at all. Every little thing will keep me awake.  I'm sure that's confusing to be around, and I know there are times when my tossing and turning and getting up and down to go to the bathroom disturbs you. We can talk about solutions to this.

All these symptoms and the chemical changes in my brain from pain and fatigue can make me depressed as you'd imagine. I get angry and frustrated and I have mood swings. Sometimes I know I'm being unreasonable but I can't admit it. Sometimes I just want to pull the covers over my head and stay in bed. These emotions are all very strong and powerful. I know this is a very hard thing about being with me. Every time you put up with me when I'm in one of my moods, secretly I'm grateful. I can't always admit it at the time, but I'm admitting it now. One thing I can tell you is it won't help to tell me I'm irrational.  I know I am, but I can't help it when it's happening.

I have other symptoms like irritable bowel, muscle spasms and pelvic pain that will take their toll on our intimacies. Some of these symptoms are embarrassing and hard to talk about but I promise to try. I hope that you will have the patience to see me through these things. It's very hard for me too because I love you and I want to be with you, and it makes everything worse when you are upset and tired of dealing with all my problems. I have made a promise to myself and now I am making it to you: I will set aside time for us to be close. During that time we will not talk about my illness. We both need time to get away from its demands. Though I may not always show it I love you a million times more for standing by me. Having to slow down physically and having to get rid of unnecessary stresses will make our relationship stronger. (Here is the source of this letter).

Today's Pinspiration:

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Iowa State's 100th Homecoming

Earlier in October, Nick and I saw a tree with beautiful fall leaves (among many - ha!) that had recently dropped big colorful leaves. We decided to stop and pick out the prettiest ones to take home for a fall project. We each gathered leaves of all colors, I pressed them in a book with books on top of it for about a week, and I used them around here for some free fall decor! 

I framed this little cute colorful one (this is a 4x6 frame), and I think this little leaf is my favorite.  

 This photo is from Instagram and is a bit blurry.

Our fallified "welcome" sign. 

We had fun with it and I enjoy having some fall decor around here! Without these leaves, we don't really have any fall decor, so this worked out very nicely! 

 I also posted a few weeks back about my new Stella & Dot earrings - they arrived the following week and sure are pretty! I loved the packaging they came in:)

Last weekend, we were able to make it back to ISU for the homecoming game vs. Baylor. We hadn't been back to an ISU game since we graduated and we'd been trying to find a time to go. This wasn't just a homecoming game, it was Iowa State's 100th homecoming! It was a chilly night game (mid-thirties I believe), but we got to jump out of our seats quite often as we enjoyed a win! 

Touchdown! 

We had fun taking photos at the game too

We love our ISU!

Me and the Jack Trice sky

It was a great game and fun to see ISU's defense looking strong. 

Good game, guys!

 Here's a beautiful sunset I enjoyed this week too. I'm such a sucker for amazing skyscapes. 

 I was also excited to see Pier 1's holiday catalogue arrive this week:

It's that time of year again: Cheer 1 Imports!

I might do this fragrance as my "holiday" fragrance for my reed diffusers. I used "oceans" from Pier 1 for the summer in all of my diffusers and I want to switch to a holiday one, but this one would nicely last past the holidays too. We'll see! 

 

I think these peacock/turquoise colors are so much fun!

These just give me the warm and fuzzies...

 

 So much fun! I love Pier 1's holiday stuff. 

I have some catching up to do with photos of this weekend's fun with Maggie and Hudson's trip here for the weekend too! I love the many fun-packed weekends we've been having, but I get tired too so I've been delayed in my posts lately. We'll get there! I take lots of photos (oh, you know that?;)), so have lots more to share in the coming posts. 

Today's Iowa State Pinspiration:

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Have you heard Jack Trice's amazing story? If not, you really should check it out.