In the Darkness

I keep thinking this will be the day that I wake up without the darkness invading my mind. I know you can't see it, but it's there.

Why? Because we live in a fallen world with broken bodies. Why me? I don't know. My body is broken. Fibromyalgia robs my body of serotonin. Then Seasonal Affective Disorder (SAD) robs me of norepinephrine, dopamine & even more serotonin. I've started on meds to help replenish those vital brain chemicals, but it takes time.

The "feelings" caused by the lack of those chemicals are in stark contrast to reality. Loneliness, sadness, despair... It's a constant battle to not give in, to not just go with those feelings or to just stop feeling... to withdraw from everyone & everything... To curl up in a ball and cry... Or to yell & scream at everyone around me... Or to keep myself so busy that I can't think...

On top of these feelings comes the guilt, fear, shame... "You are so blessed, why are you down?" "Just snap out of it!" "Depression is a sin" "Christians don't take anti-depressants" "anti-depressants will hurt you, use herbs/oils/prayer instead" "you're hurting everyone around you" "they'll all think you're crazy if you let them know you're depressed" "pretend everything's okay" .........voices that echo through my head from myself, others & the Internet.

It will ALL drive you to Sanity's Edge!!!

So I fight...

....I told my Hubby I'm struggling. Admitting it is a big step!

....I went to my doctor who is overseeing my meds.

....I journal when I can. Or in this case, blog.

....I get out in the sunshine when I can.

....I talk with those I know who have been/or are going through depression. It's a big help to know I'm not alone in this struggle.

....I'm trying to speak up about my struggle. Bringing it into the light helps loosen its grip. It also may help someone else who is struggling.

....I have a few people praying for me as sometimes I can't pray myself other than "Help me God!"

....I'm trying to eliminate as much stress as I can, which is pretty hard.

 

Some days I win the fight... Some days I lose it... Most days I'm barely hanging on but fighting for every inch...

...fighting to get out of bed instead of sleeping all day. ...fighting to smile instead of cry. ...fighting to concentrate on what others are saying instead of what my mind is saying. ...fighting to be outgoing instead of hiding. ...fighting to listen to reality instead of the "voices" of guilt & shame. ...fighting to let things roll off my back instead of taking everything to heart. ...fighting to beat this depression instead of slipping over sanity's edge.

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Frustrations & fears

Today is the day I start my new medication, Savella. I'm nervous about taking it even though I feel this is the right step for now. I'm nervous because I never know how my body will react. Lyrica didn't help & caused me to gain weight. Other meds have caused weight gain or mood swings. Some work for a few months then stop working. My doctor has high hopes for this med so I'm ready to try it. He even thinks it will help with all the weird symptoms I'm having.

Speaking of weird symptoms, I'm feeling so frustrated over them. When listing symptoms for my doctors, I get a long list of possible diagnosis. But when they run the tests (MRIs, blood work, etc) for those diagnosis, everything comes back normal! I mean, I'm glad the tests are normal as some of these diseases are nasty, horrible things. But it's so frustrating to have symptoms with no cause except "I guess it's just your fibromyalgia!"

My other frustration is my weight. For some reason, my body is determined to hold on to this weight. I've tried every eating plan imaginable (for 6 months or more each). I've eliminated carbonation & artificial sweeteners. I've done the low calorie thing, the Paleo thing, the whole foods thing, no gluten, no dairy, etc... It does NOT work. I still feel horrible & I still weigh more than I should. I try to walk but then end up down for 2-3 days in pain. It's so hard to be this way! I'm a doer. I like to help & do. But I can't! Ugh!!

I know God has a plan! I know God has a reason for me going through this. I sometimes wish I had a peek into God's plan. But I don't. I just have to trust in His plan. I just have to keep living life & seeking Him. I also need to keep my eyes on Him & not myself. When I do start getting fearful & frustrated, I know it's because I'm focusing on the wrong things!

I sat down to write this blog post because I was getting overwhelmed, sad & mad after reading Facebook. So many people are doing this plan or that plan for eating/exercise and having great results. I'm happy for them. I love seeing my friends get healthy. But I get sad for me. I get sad for my Hubby & kids then I get mad. But then I realize that God has us in this particular life! He knows the beginning & the end! He knows my frustrations. He knows our trials. He WILL use this for good! Who knows, maybe This is a training ground for my kids. Maybe one of the will be a doctor or a nurse or therapist... I do know they are learning compassion for those who have an invisible illness.

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Some questions

Living with a chronic health issues yourself or having children/spouse/parents who have a chronic health issue is by definition a life long ordeal. Some days you have good days & some days are pretty bad. Some days you feel like you have a handle on everything. You feel like "I got this! Life is good!" The next day you can be so overwhelmed that you wonder how you will survive the next few minutes.

These chronic health issues can include (but not limited to): fibromyalgia, hemophilia, severe food allergies, multiple sclerosis, sarcoidosis, chronic fatigue, celiac, rheumatoid arthritis & autism. The way these affect life varies greatly. I'm working on a project & would love as many people as I can get to answer a few questions listed below. You can get me the answers several ways. You can comment below, email me at joyfulmomlea @ iCloud.com or message me on Facebook if we are friends.

Thank you for your time & energy! Also, share this with others who deal with chronic health issues! Here goes:

1. Do you or a family member have chronic health issues?

2. If you feel comfortable doing so, could you share your issues?

3. What is your biggest challenge?

4. Do you have support or do you feel alone in your daily struggles?

5. Where do you find the most support?

6. Where do you find the least support?

7. What is one thing you wish you could tell others about life with chronic health issues?

8. What is the most helpful thing someone has said or done for you or your family?

9. What is the most unhelpful thing someone has said or done?

10. Do you have any other comments, suggestions, thoughts you'd like to share on these topics?

Thank you so much for your time & effort!

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Fighting

I'm not sure why this flare-up has been so hard on me. Maybe it's because I'm getting older. Maybe it's because I've gained even more weight. Maybe it's just because I've had 3 different doctors convinced it was 3 different diagnosis & lab work proved them wrong. Maybe it's the wasted time & money. Maybe it's the overwhelming fatigue. Maybe it's all the well-meaning "advice" on how to get better. Maybe it's hormones on top of everything.

No matter the reason, it has been hard. Part of me feels guilty because I am struggling so much. So many others have it so much worse. Losing loved ones, fighting cancer, losing limbs, fighting illnesses that destroy your body, being told "there's nothing more we can do", etc...

So today I'm fighting:

• The fatigue that threatens to drive me back to bed
• The guilt for struggling so much over this
• The uncertainty of when the next severe symptom will hit
• The fear of what the next new symptom will be
• The urge to give in & not fight
• The tears that seem so close to the surface all the time
• The frustration at having to watch my kids react to my health issues
• The depression that threatens to close in
• The isolation that calls me to retreat & avoid people/places
• The anger over having to deal with this that boils to the surface & threatens to erupt

Why do I not give in? Why do I fight? Because I have hope! I know there is more to life than this. This life of pain/suffering/brokenness is not forever! It is only for a brief moment!

Over 2,000 years ago, a little baby was born in a stable in Bethlehem. But He wasn't just a baby, He was God! He became man so that He could experience every trial, anxiety, fear & suffering that we face. He became man so that He could take MY sins on Himself and suffer and die for me as a sacrifice! As MY sacrifice! Then He rose from the dead! He defeated death!! Because He defeated death, I have life! I need not fear death! Because He is my Savior & Lord, I have eternal life! Once this life is over, I get to spend eternity praising & worshiping my God & Savior! Not only that, but in eternity there will be no more fighting! No more pain! No more anxiety! No more fear! No more anger! No more frustration! I will be whole!

Until then, I will fight the good fight!

12 Fight the good fight of faith, lay hold on eternal life, to which you were also called and have confessed the good confession in the presence of many witnesses. (I Timothy 4:12)

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Just fibromyalgia & carpal tunnel

I had my appointment with the neurologist yesterday. My tests came back good except for my right hand. It showed extreme carpal tunnel with weakness in my thumb. It's bad enough that I see the hand surgeon on Monday. I'm praying no surgery for now, but we will see.

For now, my neurologist feels all my other symptoms are related to my fibromyalgia. So, now I have to learn to deal with all these symptoms. I have a script to get a walker for my really bad days. I'm also getting a handicap placard for those days my fatigue is really bad.

Im struggling a lot. My symptoms are scary & annoying. But it's just more of the same thing I've had all my life. There's no cure. There's no real treatment. Different things work for different people. Lately I'm overwhelmed by everything. Do I go traditional meds? Acupuncture? Chiropractic? Herbal? All natural foods? Gluten free? Low fat, high fiber? Low carb? High protein? High fat? Lots of exercise? Little to no exercise? Stretching? Physical therapy? Massage? Do I push hard? Or do I rest? On top of all this, how do I take care of my family? How do I cook & clean? What if I continue getting worse? What if the weakness continues? What if the tremors get worse?

How do I balance working toward getting better with preparing for the worst? How do I research treatments without getting overwhelmed by it all? How do I explain to the kids the unpredictability of fibromyalgia? How do I explain that I might get better but I might get worse or I may go up & down?

At least I know that whatever the future holds, God is in control. None of this takes Him by surprise! I have to lean on Him to carry me through each & every obstacle! All this pain & scary symptoms makes me long for Heaven a little more! So I press on! I will walk through this step by step. I may never know the correct answers to all my above questions. I'm so thankful my Savior is my comforter & friend. I can vent my feelings to Him. No matter how scared & overwhelmed all this makes me, I'm thankful for it! Without it, I would not have as close a relationship with God. I would not be the person I am today. I still have tough days. I still cry. But I have hope! Hope that one day I will have no more pain! Thanks to Jesus dying for my sins & rising again! He is my living Savior & Lord! May He use my life to bring Him glory and help someone else through tough times!

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Struggling!

Let me start with the more positive stuff. I had my neurologist appointment that my Hubby set up for me after all my bloodwork came back mostly normal. I know nothing new yet, but I'm scheduled for a brain MRI & cervical spine MRI at the end of the month. Hopefully in 2 weeks I'll start getting some answers.

Now to my struggles. I have to say that I'm doing fairly good coping with the physical symptoms of numbness, tingling, pins & needles and burning. The weakness, on the other hand, is causing me some struggles.

Walking slow because I feel unsteady is the worst. I've always been able to walk through my symptoms. Now I'm struggling to walk across a room without something to hang onto. When I do have something to hang onto, I wear out very, very quickly.

From the outside, I look okay. I have put on some more weight (which is part of my struggling), but I don't look sick. It's the hidden things that make it hard. I get overstimulated easily which makes a roomful of people hard, or even just my kids all talking at once. My brain works slower than normal. A simple thing like taking sermon notes becomes almost impossible because my hand can't keep up with my brain which can't keep up with what I'm hearing. I'm finding my spelling skills have deteriorated. My vision is blurry a lot of the time & I sometimes feel off-center.

I'm only 42 (almost 43), but I feel like I'm 80! I hate that my kids are worried about me. I hate that my kids have to fix their own meals many days. I hate that I'm at my highest weight ever (even higher than my full term pregnancy weight)! I hate that i feel ugly because of this & because all my clothes feel tight & small! I hate that my Hubby has to worry so much about me. I hate that my Hubby has to carry much of the load around here when he's home from traveling. I hate that my parents have to come up & help me when I should be helping them! I hate that I don't know how to let my friends help me even though lots of them have offered. I hate that we (my family) can't do a lot of things because I don't feel up to it. I especially hate that I don't know yet what I'm fighting so I don't know HOW to fight it!

So for now, I have a good cry then just try to get through each day until I have answers. I try not to give in, not to play the what-if game, and not to dwell on myself too much! I'm so blessed & have so many who love me. I KNOW God is in control & there is a reason why I am here & going through this. But even though I know this, I still waver. I still put my eyes on myself & my problems. I still struggle! So pray for me! And let me know how I can pray for you.

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Not just fibromyalgia!

3 insignificant words yet together they mean the world to me!

 

Since my diagnosis of fibromyalgia over 15 years ago, it seems doctors want to blame everything on it. It's like fibromyalgia becomes anything & everything to these doctors. I don't fit the normal expected patient on anything. None of the fibromyalgia meds work on me. I have weird symptoms. I get weird tests results.

 

I've had doctors that were convinced I had thyroid issues after examination & then tests all come back normal so it's just my fibromyalgia. My doctors were convinced I had MS 1 1/2 years ago but because MRI & spinal tap were clear, it's just my fibromyalgia. I'm at a point of wanting to give up on doctors...

 

Then yesterday I had a doctor's appointment with my primary doctor. For almost 2 weeks, I have had constant body-wide tingling, numbness & other nerve symptoms. I've also felt weak, like I could fall. I was so nervous about my appointment & was convinced I was going to get the "it's just fibromyalgia" line.

 

We talked about my numbness & weakness. He was concerned about my blood pressure being low so he adjusted my meds. Then he tested my strength. I really thought I felt weak because my legs/feet were numb but I couldn't even push his hands up with my legs! And he was easily able to push my arms down.

 

Then my doctor said those 3 words - "Not just fibromyalgia!" He is really concerned about the weakness. He's hoping it's something simple like a vitamin deficiency or anemia or thyroid. But he's going to keep looking till we figure it out. I go back in 3 weeks.

 

I don't want to have actual weakness. I don't want to have something else wrong with me, but I'm relieved to know that I was right! It is more than just fibromyalgia! Once we figure it out, then I can work on a plan for dealing with it! It's always easier when you have a diagnosis. The not knowing can drive you crazy as you go through all the "what ifs!"

 

So for now, I take it easy. I need to stay aware of the weakness, just go with the numbness & keep a positive outlook. I need to be thankful for what I can do! God will carry me through & give me the strength to deal with whatever diagnosis comes my way!

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Fear

By [the help of] God I will praise His word; on God I lean, rely, and confidently put my trust; I will not fear. What can man, who is flesh, do to me? (Psalm 56:4 AMP)

THE Lord is my Light and my Salvation--whom shall I fear or dread? The Lord is the Refuge and Stronghold of my life--of whom shall I be afraid? (Psalm 27:1 AMP)

Fear! It's the one thing we all struggle with, some of us more than others!

When I was little, I feared people. I was shy. Then I feared the reaction/responses of people. So I became a people pleaser! At age 7, after a stint in hospital, I feared relapsing & never walking again. As I got older, I feared public speaking so much that I threw a science test so that my GPA would slip enough to put me in 3rd place in my class. I did NOT want to make a speech at graduation!

I lived with fear for almost 3/4 of my life so far. Then God got my attention! At age 27, I was bedridden & in excruciating pain. The doctors couldn't figure it out & couldn't take the pain away. In the middle of the long dark nights, I had to face my fears! I might never walk. I would most definitely disappoint & let people down.

Many times, God brought me to the verses that said "Fear Not!" TV preachers taught on fear. Books I read talked about fear. As I got better, I continued to hear, read & study about fear.

I had to come to a point where I had to choose...am I going to live in fear or am I going to trust God to protect me & provide all my needs??

I decided to trust! What a freeing decision! It didn't come easy. I had some moments of fear & times I had to remind myself to let go & leave the detail to God.

It is amazing what God has done for me & through me. By letting go of my fear, I am able to live in the moment. God has given me freedom from seeking the approval of others. If I'm living the way God wants me to, then I don't need to worry what others think. Comparison is the ultimate fear-inducer & a sign that I'm thinking too much about myself.

I'm amazed every time I am able to talk in front of a group without trembling in fear. I'm amazed every time I can call someone & actually talk to them. I'm amazed every time I can leave my house to travel & not be in constant fear something will happen why we are gone. I'm amazed that I can listen to the news & not completely freak out. I'm amazed that I can take life one day at a time & really enjoy it.

We have an awesome God! I'm totally amazed at how much He loves me. The freedom He gives is life changing! He died on a cross for my sins! I'm an imperfect, selfish, sinful person. I deserve death & punishment. But Jesus came & gave His live for me. He WAS perfect, blameless & yet He took MY sins! But His death was not the end. He defeated death! He rose again! Why? Because He loves me. Because He loves you! Just pray & tell Jesus you want Him to be Lord of your life, forgive your sins & free you from death!

Then ask Him to free you from fear! Be prepared to be amazed at the changes He makes in your life & the freedom He gives you!!

 

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