My, How Things Change

Today could have been a terrible, no good day.  Not so long ago, it would have been; however, I have finally learned that I am the one in charge of how I feel.  People can say and do whatever, but it is my choice as to how I feel.  

You see, today is my former best friend's birthday   Last year I sneaked into her house and decorated it so that she would come home to streamers and balloons and know that even though we couldn't see each other that day, that I loved her.  

Today I couldn't even text her a greeting. 

Times change.  People change.  

But rather than get all bent out of shape because of something that is beyond my control, I decided to focus today on the fact that I am blessed in oh-so-many ways.  I didn't get upset or cry or even get angry; I simply noted the day on my calendar, said a prayer for blessings on her special day, and then moved on.  

Someday, perhaps, things will change; I hope they will.  But for now I'm finally, finally learning to be content with my life just the way it is. It's taken a lot of prayer, a lot of patience, a lot of support from my hubby, and a really great counselor that has helped me see that I don't need to give others control over my feelings.  

Today, and every day, I choose to find my invincible summer.  

Fibro 999, Sherry 0

Today I had to do something awful.  I had to write a letter of resignation from teaching ONE class once a week for twelve weeks.  ONE.  I can't even feel well enough on a regular basis to fulfill such a small obligation.  I am disappointing students, parents, the school board, myself, and worst of all, Darcy.  

You see, it is a parent-led co-op and without a parent there, Darcy can't go.  With David being the sole source of income, he cannot take off and take Darcy to Friday School each week.  I never know if I will feel like going (and lately I never feel like doing anything before 11:00am because it is usually close to 4:00am before I get to sleep).  It physically impossible for me to function on just three hours of sleep and continuing with Friday School would require that.  

I have been bawling all morning long.  I know I have limits and I recognize that continuing to try to go each week will result in a panic attack because of the stress of going or the guilt of not going.  That part I can handle.  

What I absolutely cannot handle is disappointing my child.  She loves her classes and her teachers and without me there, she cannot go.   I am a source of constant disappointment to her because I cannot do things that other "normal" moms do.  She understands as much as any nine year old can, but that doesn't mean she doesn't get upset when we miss out on social and educational experiences.  To disappoint her once again is unbearable.  

Chronic illnesses and disabilities are simply cruel.  I would give anything to not continue to dash the hopes of my child. 

Holy crap, I haven't posted in four months!

What can I say?  It's been a busy four months.  Thanksgiving, Christmas, New Year's Eve, Darcy's birthday... There was something big every month, and on top of that, I've been in a bad fibro flare since September (absolutely my longest and worst flare ever).  Plus, I'll be the first to admit that I'm lazy about the whole blogging thing.  I feel as if it is more of a public diary and no one really wants to read it.  No biggie, though. 

Things that are new since the last post: 

Rumple and Chloe

• two new kittens and two new mice
  
• I am journaling daily in two different journals, one a guided journal and one a perpetual journal
  
• I am following along with Ali Edwards's One Little Word, with my word for 2014 being CONTENT (you can see the types of things I'm working on at my Pinterest board for OLW)
  
• I am teaching a class at Friday School based on the book Read-Aloud Plays: Classic Short Stories
  
• I threw a fun-filled slumber party for Darcy and her friends on New Year's Eve and again on Darcy's birthday.
  
• I have found a new television series to obsess over in Pretty Little Liars (which has an awesome soundtrack, by the way)
  
• I colored my hair back to it's natural dark brown (at least I think that is its natural color)
  
• I've come to accept that some former friends have decided to remove themselves from my life, and that if they can't accept me for who I am, it is their loss and not mine (part of that whole being content thing, right there)
  
• I've not only accepted that we won't have more kids, but I've decided I don't want any more.  I've gone from "I want a baby" to "If we get a kid, I'm with Darcy in thinking that she should have an older sister."  Seriously, I really like the way my life is and a baby would screw everything up.  (Hey, that's another part of content!)

The school section
of the Mom Cave

• I have a new Mom Cave (the former family room) for my Thirty-One business items and inventory, all the school books for Darcy's home school adventures, and all my craft supplies
  
• I'm starting to look more into essential oils for medicinal purposes
  
• and, I started selling my awesome Magic Menu Boards to help out other busy moms.

 See!  I've been busy!  

 My current pet peeve is one that has been bothering me a lot lately.  It's those people who do not have a chronic disability, nor do they live with someone with a chronic disability, yet they say things such as "I know how you feel."  No, you don't.  You don't know how it feels to live with constant pain 24 hours a day with no relief.  There's never a day where I can say I'm not in pain; it is always either tolerable or intolerable.  You. Have. No. Idea. Don't demean what I live with by saying that you know what I'm going through.  It just makes me lose a little respect for you when you say things like that.  Please, take a moment to read The Spoon Theory and maybe you'll understand a little bit what it is like to live with chronic pain. 

Furthermore, I feel as if I'm am often judged because I don't look sick.  I can force myself to get dressed and put on makeup and participate in activities, but that doesn't mean that my body isn't screaming at me every second.  If I don't make an effort and always look as badly as I feel, I'm judged for trying to gain sympathy or, even worse, being a hypochondriac.  If I do make an effort, then I'm judged for faking being sick.  It's honestly a no-win scenario when you are dealing with an invisible illness.  I may not look sick, but then again you don't look dumb.  I guess it all evens out. 

A Day in the Life

This is my life, such as it is:

Wake up between 10:00 and 11:00, depending on what time I went to sleep (usually after 4:00). 

Drink coffee while I peruse Facebook to see what's going on in the world.  

Catch up on my games. 

Get Darcy started on her lessons, so there's a good four hours.  

Back to Facebook for news and games.  

Cook dinner. 

Watch television with David.  

More Facebook and maybe Pinterest.  

Go to bed, where I continue with Pinterest and maybe Netflix.   

Wait for tomorrow to do it all over again.  

I lead such an exciting life ... NOT!  

Keep Your Platitudes to Yourself, Please

This week was hell on me, and all because I'm a failure at the most basic of functions:  creating life.  

You see, for years upon years upon years, we tried for a baby.  We went through every test and we jumped through every hoop and yet there was simply no explanation as to why I couldn't have a baby.  I see women post things on Facebook about trying for six months and being disappointed.  Come see me when you've been trying for so long that your friends have kids who are grown and working on their own families.  

I will never, ever, ever know what it is like to create a life.  I will never know the feeling of wondering if it's butterflies or little kicks.  I will never know what it's like to hear the heartbeat of a life I've created.  I will never know what it is like to look upon a little life and know that it was created out of the love my husband and I have for each other.  

Yes, we have Darcy and are beyond blessed, but I am reminded every single day that my family is not complete.  Don't believe me?  Let's look at this week as the perfect example.  

Day 1:  friend "A" posts pics of a newborn placed in her home and I had no idea that this was even a possibility 

Day 2:  friend "B" posts pics of her newborn, and while it was expected, it still cuts through me

Day 3:  Darcy and a friend find the drawer with all of Darcy's baby memorabilia and go through all of it, oohing and ahhing over everything, bringing me things to show me how cute or how precious. 

Day 4:  at a home school function, a mom asks me which children are mine; when I point out Darcy, she responds (rather aghast), "You just have the one?"

Every single day, without fail, I am reminded of my failure to complete our family.  I can't even go on Pinterest without seeing nursery ideas or baby shower ideas or newborn photography ideas.  It certainly doesn't help that my (former) best friend is currently pregnant and is sharing that experience with the witch who caused our falling out because she, too, is pregnant.

What's that?  We can adopt again?  We can foster?  WOW!  We'd never considered that!!!  I apologize for my sarcasm (well, not really) but did you really think that these aren't things we've examined in minute detail?  Do you really think us that stupid?  Those are not options for us.  Unless a miracle happens and someone literally walks up to us and gives us a baby (and no one loves us enough to do that), I will always feel as if my family isn't complete and that I'm a failure as a woman.  Druggies and teenagers and single women everywhere can have as many kids as they want; I can't even have a second successful adoption! 

I found the following information online, and it is worth repeating:

"Infertility is, indeed, a very painful struggle. The pain is similar to the grief over losing a loved one, but it is unique because it is a recurring grief. When a loved one dies, he isn't coming back. There is no hope that he will come back from the dead. You must work through the stages of grief, accept that you will never see this person again, and move on with your life.

The grief of infertility is not so cut and dry. Infertile people grieve the loss of the baby that they may never know. They grieve the loss of that baby who would have had mommy's nose and daddy's eyes. But, each month, there is the hope that maybe that baby will be conceived after all. No matter how hard they try to prepare themselves for bad news, they still hope that this month will be different. Then, the bad news comes again, and the grief washes over the infertile couple anew. This process happens month after month, year after year. It is like having a deep cut that keeps getting opened right when it starts to heal."

I've received some really, really bad advice this week, so let me tell you what NOT to say.  Do not tell me that this is God's plan for my life.  Do not presume to know what God is thinking.  Also, do not tell me that I should just pray about it some more because it will all work out.  More than a decade of prayer has been out into this already; at this point, my faith is fairly shattered and it would literally take a miracle for restoration.  I don't need to hear that we should look into adoption or fostering or that there's still time.  Time is not on our side.  

Just be there.  Don't give platitudes or unsolicited advice.  Just recognize the pain and the grief.  With the exception of two people, no one that I know has ever gone through the exact same situation.  There is no way you could possibly know what to say; I'd much rather you stay silent than insult me with clichés about God's timing or advice on foster care.  Short of giving us a child, there's not a single thing you can say or do.  To make it easier, I'll refrain from posting any comments about my bitterness over how I have been devinely failed.  

You Truly Have NO Idea

This is as good as it gets for me.  This is what it is - constant physical pain and the emotional pain that stems from it.  Some people have said to me that if I don't like the way my life is that I should change it.  To them I say, how can I change a disease that researchers didn't even put a  name to until 1981?  I have tried every known medication, homeopathics, supplements, acupuncture, massage therapy (both regular and pressure point), chiropractors, rheumatologists, internists ... the list goes on and on.  I have multiple chronic illnesses.  That is my life.  This is my life. 

I ask, do you honestly know what all the symptoms are for Fibromyalgia?  I doubt it.  You probably think it is occasional pain.  It is so much more than that.  Let me give you a partial list of symptoms (and these are just the ones that affect me; I'm not even listing the symptoms from chronic fatigue, myofascial pain syndrome, generalized anxiety disorder, depression, or insomnia - all things I have been diagnosed with):

1. Delayed reactions to physical exertion or stressful events  
2. Cravings for carbohydrate and chocolate 
3. Headaches & migraines
4. Vision changes, including rapidly worsening vision
5.  Pain that ranges from mild to severe, and may move around the body
6. Morning stiffness
7. Muscle twitches
8. Allergies
9. Mold sensitivity
10. Earaches & itchy ears
11. Ringing ears (tinitis)
12. Light and/or broken sleep pattern with unrefreshing sleep
13. Fatigue
14. Sleep starts (falling sensations)
15. Twitchy muscles at night
16. Teeth grinding (bruxism)
17.  Short-term memory impairment
18. Confusion
19. Trouble concentrating
20. Staring into space before brain "kicks in" 
21. Sensitivity to odors
22. Sensitivity to pressure changes, temperature & humidity
23. Sensitivity to light
24. Sensitivity to noise
25. Panic attacks
26. Depression (as an overlapping condition)
27. Tendency to cry easily
28. Free-floating anxiety (not associated with situation or object)
29. Mood swings
30. Unaccountable irritability
31.  Pain that mimics heart attack, frequently from costochondritis (as an overlapping condition)
32. Pronounced nail ridges
33. Bruising or scarring easily
34. Tissue overgrowth (non-cancerous tumors called lipomas, ingrown hairs, heavy and splitting cuticles) 
35. Reduced ability to get pregnant

Quite a list of symptoms, isn't it?  I have friends who complain about the following all the time:  allergies, headaches, weight, etc.  Why are you allowed to complain about these trivial things and I'm not allowed to complain about something chronic?  

If you have allergies, you take a pill and you know that they will go away. 
If you have a headache, you take a pill and you know that it will go away. 
Break a bone?  Have it set and know it will heal.
Overweight?  Change your diet and see results.
Out of shape?  Exercise and see results.

Fibro?  Not a damn thing in the world will help.  There is no pill, no doctor, no food, no exercise, no anything that will make it better.  The pain is always, always there and it will always, always be there.  

I track my pain levels.  I chart them daily, along with weather conditions and other external factors (stress, lack of sleep, etc.).  I have done this since before I was ever diagnosed with FMS.  I can honestly say that for years now, there has not been one single day where I have been free from pain. If you look at the pain scale in the app I use, my pain is never below a 4.  Ever.  For the past six weeks or so, my pain level has been more consistently around a 7. 

0)  Pain free
1)  Very minor annoyance
2)  Minor annoyance
3)  Annoying enough to be distracting
4)  Can be ignored if you are really involved in something, but still distracting
5)  Can't be ignored for more than 30 minutes
6)  Can't be ignored for any length of time
7)  Makes it difficult to concentrate, interferes with sleep; can function with effort
8)  Physical activity severly limited.
9)  Unable to speak; crying out or moaning uncontrolably
10) Pain makes you pass out

FMS does not cause depression but you try living in constant pain every second of every day for years and tell me how great your attitude is.  That effort that it takes to function at a Level 7 of pain is emotionally and mentally exhausting.  So, please, forgive me if my status updates about my life annoy you.  Your "things will be brighter tomorrow" crap just pisses me off because I know that you have no idea what I am dealing with.  I truly hope you never, ever have to deal with the things I deal with on a daily basis. 

eGADs! I have GAD!

Generalized Anxiety Disorder, aka GAD, is something I've become way too familiar with over the past two years.  For me it manifests in two main ways.  

The first major effect of GAD on my life is anxiety, often leading to panic attacks.  I've learned what several of my "triggers" are and I can avoid those situations when possible, but that's not always the case.  

For example, I had to attend a memorial service for an extended family member last week.  Being around groups of family members is one of those triggers (even very small groups freak me out).  I had to resort to anti-anxiety medication which gives me horrible side effects, so much so that I would almost rather have a full out panic attack that results in another visit to the ER. 

My first signal of a panic attack is the feeling of anxiety or dread, followed by the numbing of my left arm.  I get very shaky and clench my fists repeatedly.  My breathing increases and I feel faint.  I have heart palpitations so bad that it feels like a heart attack. 

Other triggers are having to go to the local Air Force base, doing anything with anyone from the school district where I used to work, and sometimes there are just the unknown triggers that randomly appear.  Fun times, my friends.  

The second major effect that GAD has had on me is I am now very easily overwhelmed, to the point where I cannot function.  I used to be able to organize and multitask like a champion, but now it just bogs me down.  

Take today, for instance.  I have so much on my plate today that I literally am just in tears.  I want to crawl back in to bed and throw the covers over my head and hide.  I know everyone gets overwhelmed, but for me it makes me crater into a black hole.  There's nothing to do about it, either.  

It sucks, this GAD.  

For more information on GAD:  http://www.nimh.nih.gov/health/topics/generalized-anxiety-disorder-gad/index.shtml