Saturday, April 14, 2012

My name is Natalie, I'm 29 years old and as you've probably guessed, I have Fibromyalgia and Chronic Fatigue Syndrome. Tonight is Saturday April 14 2012. The whole day has passed me by, actually, the whole week has passed me by. I don't think I spent much time with my kids or doing anything productive for that matter these past 6 days. I am left thinking "what purpose have I even served this week?". Let me back up a little. In September of 2011 I was finally diagnosed with Fibromyalgia and Chronic Fatigue Syndrome. I'd known for a few years that something was definitely wrong with me, I mean, I was in my 20's but I felt like an old lady with the flu most the time.

After being diagnosed I felt a bit of relief knowing that I wasn't just crazy or lazy, there was a reason for all of my pain and fatigue. I was a little nervous though about the diagnosis because as of yet there was no cure, not a lot known about it, and frankly it seemed not very accepted as a legitimate disease. You see, while I knew I wasn't a "wimp" or "lazy" I wanted my family and friends to know the same thing. All I could do was ask them to educate themselves on it. I still find it very frustrating that my husband has yet to sit down and actually learn about it. He said, and I quote "I don't need to research it on the internet, I live with someone who has it." What a slap in the face. So, he cares to research all sorts of stuff about guns and cars, including a gun he "lives" with, but he can't care enough to learn about a disease his wife has.

Okay, I got a bit side tracked there, sorry. After diagnosis I found a medication that helped me manage the pain but it didn't help with the fatigue. About 2 months ago I found another medication that drastically changed my quality of life. While the pain is, well painful, I've learned throughout the years to deal with the normal "non-flared" everyday pain. The fatigue on the other hand was very debilitating. I found myself most days feeling like I needed to just lay down under a heating blanket and sleep; I couldn't do all the things I wanted to do with my family and it made it almost impossible to take care of the necessary things in my life. Okay, so this new medication actually has been affective in keeping me from feeling the affects of the Chronic Fatigue. I have energy again and I, when I don't over do it, feel young again. I can clean, play with my kids, take on tasks and so on. I love it. Here's the problem though, because I have energy I'm mistaken on my body's ability to work.

So, going back to this week. Easter Sunday my family went to my aunt's house to fix it up. There was damage to it and some deep, deep cleaning that needed done because of people who lived there with her and took advantage of her. They are no longer there. Any way, I decided to put my whole self into serving my aunt on Easter, I mean, what better thing to do and teach your kids than to serve on the day that God served us in the greatest way ever? I worked from 11am to 9pm with only a dinner rest. My step-mom kept telling me to stop because she knew what would happen to me after. We are living with my dad and step-mom while my husband works on getting his new heating and and air company off the ground and stable enough for us to be out on our own.....that's a whole other story. So, because we I live with my step-mom and she stays home as well, she sees first hand what having energy and over using it does to my body for days after.

I should have listened to her. Not to her surprise but to my disappointment, I was completely "out of commission" the next day. The pain was crazy; I couldn't even get out of bed until that evening. Tuesday I was still in a lot of pain but it was manageable and I could get around. Wednesday I woke up with more of my "normal" pain level but feeling sick. Thursday I broke down into a self pity fit from my frustration of not being able to be "normal". There are so many things in my life that I want to do...goals, hobbies, dreams, ministries....some selfish and others not, but when I have weeks like this last week I feel incapable of moving forward with any of them; life is put on hold, I have no control, and I feel like nothing will ever get done. I decided at that point that I can't have weeks like this anymore. So, how can I prevent these weeks?

 Well, I find emotional and physical stress cause "flare ups" in me. I have already eliminated a few emotional type of stresses that I could reasonably eliminate but life is full of stresses. I need to learn my physical limits and how to manage emotional stresses. I want to do so much but I'm realizing that I can only do a few things that I enjoy so there isn't so much "on my plate". The rest of me needs to focus on Cross Tuition (non-profit charity I founded in 2008), my girls...including home schooling them, and my husband. I hate that I'm having to give up on giving of myself because I truly love to serve.

I had a conversation with God on Thursday, well, it was more like a child complaining to her dad. I told Him that He either needs to take away all my desires to serve and do more or He needs to take away the disease. I also reminded Him, not that He needs reminding, that just like Moses I'm completely unqualified to run Cross Tuition and to home school the two precious children He gave to me. Not only do I lack the education and "know how" I lack the emotional and physical capacity....without risking a "flare up" to actually be successful with either of them. I know God has called me to both just as He called Moses to go talk to Pharaoh and get His people out of Egypt. Moses felt he couldn't do it because he had a speech problem. God decided to give Moses a way by having his brother, Aaron, speak for him. So, if God wont take away the desires, calling, or disease, then I need Him to give me an "Aaron". I'm interested in seeing what He does and I'm waiting with thanks for His answer in advance.....I just hope my timeline isn't to far off from His.

Friday I progressively got worse. So here we are now, Saturday. I hardly slept last night because I felt so bad; almost went to urgent care this morning because I can't handle another week being sick and unproductive. I decided not to go after I called to find out the wait time.....there were already people ahead of me and the doctor wasn't due to arrive for a least an hour. I decided that trying to sleep would be a better solution for the time being. My husband got a call at 12:25pm from his mom. She was wondering if we were on our way to my niece's birthday party. MAN I MESSED UP! I felt so horrible. I completely forgot about her 14th birthday party today at 12pm. I can't imagine how we made my niece feel by forgetting and not showing up. My husband told his mom that he didn't even know about it, which he later remembered that he did, and that I was in bed sick. I HATE THIS DISEASE!!! Part of fibromyalgia are memory problems and a weakened immune system. If I didn't have this dumb disease I wouldn't have flared from helping my aunt, I wouldn't have gotten sick because I flared, and I wouldn't have forgotten my niece's birthday party.

I'm putting my foot down! It's one thing to be hurt from my own disease but I'm seeing how it's also hurting so many others around me that I love. Strangely enough, putting my foot down so my disease doesn't hurt others means I have to become very focused on myself (ugh! I hate even saying that; it seems so selfish). Putting my foot down must be done with patience and gentleness. I must learn to slow down so that I can speed up and to do less so that more can get done.

So here I am, writing to whoever will listen; maybe no one and that's okay but I will continue to write any way. I will continue to talk about my life and expand on who I am, other than a women with a disease. If anyone is there, I encourage your input, advice, comments, questions, or whatever you have to say. Would be nice to know you're there.

24 comments:

  1. Natalie, I'm listening and I hear you. Love Dad.

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  2. Hi Natalie. This is Breanna. I don't know if you remember me, but your mom used to watch my sister Cheri and I when we were little. Anyway, I saw this link to your blog on Facebook (I'm friends with your dad) and read it. I'm so sorry to hear about your struggles. I wanted to tell you that you will be in my prayers daily. Hang in there!

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    1. Hi Breanna! I do remember you. Wow, it's been such a long time. I will look for you on my dad's facebook page and friend you. Thanks for taking the time to read my blog and for being willing to pray for me. I hope you continue to follow my blog.....it's not all about my struggles, it's about living beyond them; just needed an intro for people to understand where I'm coming from. Thank you for your support Breanna. Let's see what God does :-)

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  3. Hi Natalie - I'm listening, too. You are in my prayers. I'll give you a ring this week.

    M

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    1. Thank you for listening. Please continue to follow my blog.

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  4. I pray that God uses every situation you face. God bless you.

    Sirius who received grace through you.

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  5. Hi Natalie
    This is Breanna's mom Deb. I can't believe you are 29!

    I wanted to drop you a note because I was diagnosed with fibro about 3 years ago. It is like any other "invisible disability," people tend not to understand it if they can't see the problem. I'm afraid that is just one aspect that you will just need to come to terms with...maybe that is part of the life lesson...you can't control what others think so learn to detach yourself from their "good opinions" -smile.

    If you haven't already found it, there is a lot of info at this site http://www.fmaware.org Also look for some support groups in your area. You'd be surprised how many of us are out there.

    I'd also like to recommend a book for you to read called, "Faith in the Night Seasons-Understanding God's Will" by Chuck and Nancy Missler. If you can't find it, let me know and I'll send you a copy. It may give you new insight as to why bad things happen to good people. I found it very helpful in many areas of my life.

    Running a non-profit--Hmmm something else we have in common. I have started and run 3 non-profits in my career and I can tell you it is not for the faint at heart. The last one I started became so overwhelming that I recently stepped down from the board of directors. Just remember Natalie that perhaps your role in the non profit was to get it up and running and it may be someone elses job to take it from here. You have a lot going on that no one else can do (wife and mother are the most important roles a woman can have) so don't be afraid to pass some things along to someone else or put them on a back burner for now.

    Above all hang in there Natalie. Don't stop writing--it's great therapy! We will all follow along and encourage you as go

    Blessings

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    1. Hi Deb, thanks for writing. Crazy that you have fibro too! It certainly is become more and more common, especially now that doctors are finally recognizing it as a legitimate disease. I do have a lot on my plate...no more than any one else...but still a lot. As long as I don't have a "flare up" I seem to manage pretty well. I'm new at this whole thing and still trying to figure out my limits. Still feel very much so called to Cross Tuition, just need more help on the professional and fund raising side. Also, some web help would be great as well. Just saw today that my website for Cross Tuition and email are no longer working, don't really know why. Called my web hosting company to find out and I'm still waiting for a return call. If you know anyone who might have some energy to volunteer their fund raising/web expertise to Cross Tuition, please send them my way. I will check in to the book and let you know. Thanks for following!

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  6. Thank you Sirius. I am grateful that God allowed me to show you that grace. All grace comes from Him but He chooses to show it so many times through His children. It is a way to connect to our brothers and sisters. I was and am blessed to of had the opportunity. Thank you for your kind words.

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  7. Hey Natalie,

    Kind of random, but when I read your blog (actually, even just seeing the title!) I immediately thought of a friend of mine and her mom. Her mom has suffered with fibrobyalgia her whole life and her daughter recently developed full-blown celiac's disease, which they are saying now is a hereditary gluten intolerance that gets worse with each new generation. I think it is very likely that her mom was also gluten intolerant, but didn't know it, because studies show gluten is connected with many auto-immune diseases and such.

    Have you considered that? Here are two helpful reads:
    http://surefoodsliving.com/2008/11/fibromyalgia-chronic-fatigue-and-gluten-intolerance/
    http://www.sarahwilson.com.au/2012/02/gluten-questions-answered/#more-1401

    I really, really cannot stress how important I think it is to consider diet patterns and such when faced (especially suddenly) with something so big. We don't have any symptoms, but want to keep it that way so are cutting down on how much gluten we eat. Not cutting out because we don't need to, but it's amazing how much we actually eat! Especially when you consider hidden sources, like soy or even many shampoos!!

    Hope you are well,
    Teranne

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    1. Thanks Teranne,

      I appreciate your support and encouragement. My grandma has celiac's as well. I've learned a lot about gluten and how everyone is pretty much better off without it since her diagnosis. Thanks for the links. Please continue to follow my blog and comment as you feel fit.

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  8. Hi Natalie - I've been thinking about you ever since I first read your blog & responded earlier this evening...just know you are not alone in your struggles. I was recently diagnosed with parkinson's disease and although my 2 meds presently mask any obvious effects of the disease it remains a degenerative disease which will progress and disable. I'm stuck in the middle of the street and I know eventually a bus is coming and I can't get out of the way. But you are so very young and have time for the Lord to heal you in health & spirit. I admire your strength and courage to share this trial with others who may be weak like me. You remain in my prayers.

    M

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    1. Thank you M. I'm sorry to hear about your diagnosis. I cannot begin to imagine how you feel. I would encourage you to stay strong as well; God is not finished with you yet. Remember, the title of my blog is not My Life Because of Fibromyalgia and Chronic Fatigue Syndrome but rather, My Life with Fibromyalgia and Chronic Fatigue Syndrome. This is the story of my life WITH it not Because of it. Although I am not in your shoes, I encourage you to live your life in the same way. Thanks for following my blog. I look forward to hearing more from you.

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  9. Hi Natalie! I'm so sorry to hear that you have this awful disease. I have a friend who is struggling with so many of the same things that I've "heard" you express here in your blog. I've seen the frustration that she goes through, and from what I've researched, the frustration is pretty common to all the victims of this disease. I have no pithy advice for you, but as a woman who has faced a few frustrating illnesses myself, I can tell you that God is big enough for every need you'll face through this. I'll be praying for you, as will Jeff and Lizzie. If I can ever help, support, encourage you in any way, I hope you'll feel the freedom to get in touch.
    When I was diagnosed with thyroid cancer 2 years ago, I started a new blog. Here's the link, in case you're interested. I'm giving you the link to the first post. http://glowininthedark.blogspot.com/search?updated-max=2010-09-07T15:05:00-04:00&max-results=7&start=35&by-date=false
    Take care, give our love to Ron and Jill and everyone. I'll be praying for your husband as well!
    Grace and peace,
    Ann

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  10. Thank you Ann. I appreciate the prayer and support. I will definitely check out your blog....hope to hear that the cancer is in remission though. I'll let them know that you said hi and I'll tell my husband that you have him in your prayers too. Continue following my blog, would love to get your feedback from time to time.

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  11. Hey Natalie! It was absolutely eye opening to read this! You are in our prayers as well. You will find your strength, I imagine through your understanding of not only the disease but yourself. Thank you for writing. I look forward to more posts.

    Cheri

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    1. Thanks for reading my blog Cheri and thanks for your prayers. I look forward to reading your comments.

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  12. Oh Wow, just wrote a big long blog and selected the google profile and I have no idea where it went so starting over. So good to see my highschool friend, Debbie and her two sweet daughters on Natalie's blog. Think of you often. Interesting...didn't know of your illness Deb. Thanks for the encouraging words to Nat as well as you too Breanna and Cheri.
    As you can figure by Natalie's profile she is a pretty fantastic person. She loves The Lord, her family, is a good mom, entrepreneur, great story teller and genuinely cares for her fellow man. Natalie, I know that God has a plan for you. Jeremiah 29:11 I have heard that the medical profession does not know how or why some people have fibromyalgia, But God knows and I pray that by His Grace and to His glory you will be healed. I love you bunches, Mom

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    1. I love you too mom! Thank you for being so kind....you certainly make me sound better than I am.

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  13. 2 Corinthians 12 v 9"My gracious favor is all you need. My power works best in your weakness"

    I hope this verse helps you as much as it has helped me, God is with you in this...even if you can't see it. I have been suffering with the same conditions for the past 14 months, I'm going to my first CFS clinic tomorrow, and if I learn anything of any interest I'll share with you!

    I'm 38 have lost my job and can't even do the housework which my lovely husband does, along with all the washing ironing shopping and looking after the kids...and he holds down a full time job. I get frustrated too, so its been helpful to read your blog....at least with the internet we can share and realise we are not alone.

    God bless

    Carolyn

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  14. This verse does help, thank you Carolyn. I would love to hear if you learn anything at the clinic. I'm glad you're reading my blog. Please continue to read my nightly entries (I hope I can write every night). I used to be one to give advice on people's conditions but I've learned because of all the "advice" I've received over the past few years since realizing something was wrong with me, that sometimes that "advice" isn't so helpful. Let me tell you though what has worked for me. I started medication for the fibro which hoped manage the pain but the fatigue was still very much so overwhelming and debilitating. My doctor thought that giving me sleep meds would help with the fatigue......I hated the sleepmeds and will never take it again! So, I did my own research and found a lot of people with chronic fatigue saying that Adderall had made a huge difference. Adderall is a stimulant, not a sleeping pill. It is used for ADHD and Narcolepsy. I talked to my doctor about it and she said I would have to see a psychologist to get it. I went to another doctor for a second opinion and she prescribed it to me. 20 milligrams in the morning is all I take and it completely takes my fatigue away. It gives me the energy I need to have a normal activity level without feeling shaky or like I'm over caffeinated. The only thing is that I'm having to learn that just because I have the energy doesn't mean my body will be able to handle all the movement. It's easy to flare up when you over due it. The only time the Adderall doesn't work is when I'm flared. Not sure if that's something you have to worry about if you don't have fibro. Adderall gave me my energy back completely and now I can get stuff done......just have to be careful about how much stuff. Keep me updated and let me know if you decide to try it or if you find something else.

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  15. Hi Natalie,
    I spent the week at Forest Home while you were there last year, and we previously met through the Sudduth family. I am sorry to hear about your struggles with this disease. I will be thinking and praying for you and your family. Be strong :)

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    1. Thanks Derek! I certainly appreciate the prayer. I hope you choose to continue reading my blog and leave some input when you feel led to.

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