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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Another update

It's been awhile since I've posted. Since I've had no answers, I really didn't feel like posting. I had my MRIs several weeks ago & was supposed to see the neurologist last week. His office cancelled that appt & couldn't see me until Nov 4th. We called back & stressed that I needed to be seen before that, so I saw the nurse practitioner today.

The good news is that my MRIs are clear. So no MS! There is some arthritis in my cervical spine but according to them it is normal changes with age. They feel that the numbness/tingling is my fibromyalgia. She did listen to my concerns about the weakness/feeling off balance. I also stressed that I'd like to get back to walking, but fear I might fall.

After some testing in the office, she ordered an EMG with NCV. Confused yet? :-) An electromyogram (EMG) measures the electrical activity of muscles at rest and during contraction. Nerve conduction studies measure how well and how fast the nerves can send electrical signals. They will compare these to the studies I had done 1 1/2 years ago to see if my muscles are actually weaker or if it's a nerve signal issue.

After these tests, she said I'd probably be sent to physical therapy. She's worried about me falling and urged me to be extra careful until then. She also was concerned that my BP was high. I think it's just the stress over this, but have message in with my primary doctor. Oh & she also asked my primary doctor to up my Effexor. She felt it might help alleviate some of the nerve symptoms. I felt like it was a productive appointment. No real, definite answers but movement in the right direction.

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I'm gonna be alright!

I've been struggling a lot! Anytime you don't know what is wrong with your body, you struggle. It's always a roller-coaster of emotions.

I went to my regular doctor who confessed to me that he has no idea what is going on with me. He said we will wait to see what the MRI shows & then go from there. It was refreshing to have my doctor admit I have him stumped.

Last week, one of our elders at church preached about giving thanks & praise to God! This week, one of our missionaries, Dave Weston, preached on prayer! We need to become prayer warriors! We need to become impudent people who are so impassioned for Christ that we become people of prayer! Through these 2 sermons, God has laid it on my heart that I need to use this "down" time more effectively. I need to pray more for all those around me.

I was also blessed today after church by 3 wonderful, lovely ladies who came over to me & prayed over me! I didn't feel any different physically, but wow! My mood was lifted & a feeling of peace washed over me! I felt God whispering to me "You're gonna be alright!" I knew at that moment that no matter what the diagnosis, I would be alright! None of this is a surprise to God. My prayer is that whatever the diagnosis, whatever I have to go through, whatever obstacles I have to face, God will carry me through & He will be glorified through me! I pray it will be obvious that I could not get through this current health challenge without God's strength & God's Grace!

 

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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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Bam! One minute feeling good...

Then the next your symptoms over take you. This is life with a chronic autoimmune disease! It's enough to drive you to the edge of sanity.

I'm blogging this so I have a record of it. Sometimes the details blur & it doesn't seem so important later.

Today I was feeling fairly good. I was enjoying worship at church. Suddenly my whole body gets this tingly weird sensation. This was immediately followed by a heaviness. My body suddenly felt like it was lead! I sat down thinking it would pass rapidly. I don't remember much of the sermon as even my mind felt heavy. After church I walked out but felt weak & my limbs felt heavy. I was afraid I would stumble & fall. Hubby said I looked ok, just a little tired & stiff.

I felt a little better after walking to van & was able to go to lunch. Lunch seemed to give me energy & I was able to drive home from dropping Hubby at airport.

About 4 hours after this episode started, I suddenly felt very fatigued. Fortunately we were back home. I took at 3 hour nap on couch. I'm still feeling very exhausted & my body is tingly/numb all over. I'm also having some burning sensations & pin pricking sensations.

The numbness/tingling is something I've been dealing with for the past year or 2. But the heaviness was a new symptom. It's all kind of scary & my mind keeps wanting to go to all the "what ifs" that fill my mind.

Supposedly, according to my neurologist, this is all fibromyalgia symptoms. But after living with it (fibromyalgia) for most my life, this sure seems like something more...

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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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My week at camp

We serve an awesome God who is able to do more through us than we can even imagine! He can enable us to do things we really wondered if we would be able to do. "I can do all things through Christ who strengthens me." -Philippians 4:13

It all started May 6th when Justin Williams sent out an email to parents stating we needed more chaperones for the youth SpringHill work trip. For 6 days, I wrestled with God over this. After all, I have fibromyalgia & have been dealing with a flare-up of nervous system symptoms. Some days I can barely walk & spend lots of time on the couch. How could I work at camp & do all that walking? How could I sleep in a cabin & be able to move the next day? Plus, I didn't know very many of these teens. These were all legitimate concerns, but it came down to one question. Would I trust God to work out all the details, obey Him & go to camp? So on May 12th I told Justin I would go!

On Sunday, June 2nd, we loaded my van & several cars & headed to camp. I was dealing with hormone issues as well as a headache & numbness. But our God is awesome! He gave me an calm attitude & I was able to just go & do!

Monday was our first work day. I led a kitchen team. We worked from after breakfast until after supper with just a few breaks. Unfortunately, I OVERDID! I know, not a big surprise. I tried to work too much & not just supervise. By the end of the day, I didn't know whether I would make it through the rest of the week. Our youth group leaders, Justin & Debby, saw how I was feeling & got after me. They told me to slow down. They also took the after supper responsibilities from me so I could rest!

After that, I slowed down! I took more breaks, let the youth do most of the work & really started enjoying the week. I'm amazed at how much the kids wanted to serve. When I stepped back, they stepped up & filled in all the gaps. My crew did better when I let them own the job & I just supervised!

I still hurt every night. I had to take muscle relaxers every evening. But my attitude was in check & I actually enjoyed the teens. God just gave me a peace about it all. He gave me the strength I needed. I came away from the week renewed in my spirit, in awe of my Creator & with a new view of teenagers.

Our youth group

So don't let your health limitations hold you back from doing something God calls you to do! He is faithful & He will provide!

 

 

 

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God is Faithful

As I've been struggling a lot with my health recently, God has been reminding me more & more of His Faithfulness! The following video has become a new favorite of mine. It's called "Never Once" & it's by Matt Redman.

Many times, we walk through trials that overwhelm us. Yet when we stop looking at our trials & look up, we see that God has been there all along! He never promised us an easy life. But He did promise that He would walk with us through each & every trial.

I've been through many trials, especially in regards to my health. I can testify that Jesus has been faithful! He walked with me through the darkest nights. Because I've seen His faithfulness to me, I know He will carry me through whatever the future holds!

Come to Him! Cling to Him! He is faithful & will see you through each & every trial! It may not be the outcome you want, but He will be with you every step of the way. God is Faithful!!!

 

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Nerve issues

Seems like every time I post, I'm struggling! This post is no exception. Of all the symptoms I deal with, the nerve issues are the worst. The numbness, tingling, pin prickles, creepy crawlies & burning sensations are so "unnerving"! I've dealt with them in my legs due to pinched nerves or in my hand due to carpal tunnel.

But these body wide sensations are driving me insane. There is nothing I can do but endure them! Not only do the sensations bother me, but all the "what is wrong with me" thoughts... This has to be more than fibromyalgia!

So I'm biding my time till Hubby's new insurance kicks in. I'm praying I don't go insane! I'm praying that some totally worse symptom doesn't kick in, especially when it's just me & kids at home. I push through... It's all you can do!

I keep reminding myself that NONE of this is a surprise to God! He knows exactly what is going on with my body. I cling to the fact that this body is not forever! One glorious day, I will have a new, perfect body just the way God intended. I yearn for that day, but until then, I keep clinging to Jesus! He carries me through! He endured far worse pain than I when He was beaten & bruised & killed for my sin! He sympathizes with me & comforts me! Praise God!

So I carry on! I endure this thorn & look forward to the future!

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FMS vs MS vs my symptoms

I have a friend who was recently diagnosed with MS. We've both been fascinated with how alike our symptoms are. So I decided to compile a list of symptoms for both diseases. It's very interesting. Below are the results complete with my symptoms too. I don't have all these symptoms at the same time. Some of them come & go.

 

 

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I overdid again!

Seems like this is the most frequent phrase out of my mouth recently. Anything I do ends up being too much!

 

Sorting Legos, too much! Washing dishes, too much! Doing laundry, too much! Cleaning kitchen, too much! So do I sit around & just do nothing? Turns out that even that seems to leave me hurting.

 

So today I decided to push myself & see if mowing puts me out of commission. My son helped some, but I did the majority of our yard myself. I'm pretty achy right now but I'm not sure if it is more than usual. So now we wait and see...

 

If it's no more than usual, then I will continue pushing myself. If it's more than usual, then I know I need to back off & quit trying to do myself in.

 

In other news, I've been reading lots of research & watching videos about research about fibromyalgia. I've said for a long time that I feel like my nervous system has gone haywire. Guess what? Research is showing just that! People with fibromyalgia have a faulty nervous system. We have increased pain receptors (Substance P). It also seems we don't release endorphins like normal people do. We never get that "runner's high" instead we only feel the pain. Also our pain receptors respond to normal stimuli like it's excruciating!

 

Another theory I find interesting is that some people think that fibromyalgia is just a light version of MS. It's estimated that about 1/3 of those with fibromyalgia go on to be diagnosed with MS.

Some of the articles I've been reading:

http://www.anapsid.org/cnd/diagnosis/brainpain.html

http://www.newswise.com/articles/fibromyalgia-and-the-brain-new-clues-reveal-how-pain-and-therapies-are-processed

http://jensupine.blogspot.com/2011/12/psychology-of-pain-fibromyalgia-can-no.html

http://brain.oxfordjournals.org/content/early/2013/03/09/brain.awt053.abstruact

http://www.fmnetnews.com/free-articles/article-samples/why-head-to-toe-pain

http://www.fmnetnews.com/free-articles/article-samples/sensory-overload

http://www.youtube.com/watch?v=jtc2JARVpPw?width=640&height=480

http://www.biomedcentral.com/1472-6890/12/25

http://www.foxnews.com/health/2013/02/26/questions-arise-over-new-diagnostic-test-for-fibromyalgia/

http://sacfs.asn.au/news/2013/03/03_10_u_opioid_receptors_impaired_in_fibromyalgia_patients.htm

http://sacfs.asn.au/news/2013/04/04_29_could_mitochondrial_dysfunction_be_a_marker.htm

http://www.eurekalert.org/pub_releases/2012-12/bawh-rgn121912.php

 

 

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Balancing Act

I feel like coming through a fibromyalgia flare-up is very much a balancing act. How much can I do without sliding back into a flare-up? If I sort laundry, how much time should I rest on the couch? Can I go to the store or will it put me down for a week? If I do dishes will my back & arms ache all night? How much do I do & how quickly do I start doing this stuff?

So as I look to this weekend, I'm wondering how am I going to balance all that needs to be done against my health. Lots of breaks! And lots of prayers for wisdom to know when to stop & rest! And lots of help from Hubby & my kids.

 

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Sidelined by a flare-up

Life with fibromyalgia has its ups & downs. But you tend to find a new normal. You ache & weather changes make it a little worse. But every once in awhile, you have a full blown flare-up. I liken it to the tornado Fujita scale. Most time I operate at an F1 with an occasional F2 & F3. An F5 is when I'm completely bedridden & hurting so bad I'm almost sick. Right now I'm experiencing an F4! Not good!

I think this flare is a combinations of stress, overdoing & weather changes. I should have seen it coming, but I always think I'm doing good. I just think it's a little flare & I push through it. This time I was wrong.

Wednesday afternoon, my pain levels went crazy. Muscle pain & joint pain. Muscle tightness too. Body & mind fatigue. Weird numbness throughout my body. Usually it's 1 or 2 of these at a time, not all of them! I know this will pass. It always does. But while you are in the middle of it, it's so hard.

Fortunately my Hubby is taking good care of me while I'm sidelined by this flare-up. And I know lots of people are praying for me.

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Meds, side effects & more

So much going on with my health & I haven't felt up to posting.

On Jan 28th, I was switched from Celexa to Wellbutrin because the Celexa was fatiguing me. Since I started on the Wellbutrin, I have had headaches every day. It took me till yesterday to think it was probably a side-effect. So after contacting my doctor, I am stopping the Wellbutrin now & seeing him on Monday morning.

Between hormones, headaches, depression & pain from crazy weather, this has been a rough year so far. I'm usually fairly even keeled & seem to be able to ride the storms of fibromyalgia. But this has been hard. Rather than be constantly negative & posting how bad I feel, I've chosen to just be quiet.

I know God has a reason for me going through all this. But sometimes it's hard to see the big picture. I know that I am very blessed. I know my struggles are are very small compared to a lot of others. So many are facing cancer, MS or worse.

But in the midst of the pain, my outlook becomes cloudy. I have to work harder to keep my mind focused on Christ. Only then can I walk through this life.

 

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Update

Sorry it's taken me so long to update. I've been on my anti-depressant for over a month now. It has been a big improvement in my moods, but it made me so tired all the time. I saw my doctor on Monday. He cut my dosage in half. If I stay stable on this & my tiredness disappears, then great. If not, my doctor has promised to work with me until we find a med that doesn't cause me side-effects. Have I told you that I love my doctor??

On top of all this, I got sick after Christmas. It was just a stuffy nose until New Year's Day. I really think I got worse because I was so worn out from Christmas, cleaning house, company & NYE party. I often forget that overdoing causes my immune system to be out of whack, more than normal.

So now I'm on antibiotic for a sinus infection. Getting better has been a very slow process. Definitely slower than I want. Hubby is actually home this month. I want to be feeling better so we can do things as a family & I can enjoy him being home.

So that is my update. Some days are a struggle. Some days are better. But through it all, I know that my God will carry me through each day. He is so faithful! Even when I feel horrible, I know God is taking care of me. Sickness, depression, pain.... They are all the result of living in a fallen world, a world marred by sin! It's not the way God created it. And one day, He will come back & make it all whole again! This world will be perfect! I will be perfected in Him! No more pain, no more depression, and no more sickness!

It's the hope of His return, that makes this all bearable! I know I am God's & He is my Lord & Savior! One day I will be healed! This life on earth is just temporary! This knowledge is my joy! My God is the King of Kings & Lord of Lords! It is for Him that I live! No matter how bad I feel, I will praise Him! Through good & bad, sickness & health, I will praise & worship God! Why? Because He is worthy of praise! He is God!

I will praise you, O Lord , among the nations; I will sing of you among the peoples. For great is your love, higher than the heavens; your faithfulness reaches to the skies. (Psalms 108:3, 4 NIV84)

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