Why do i feel so bad?

This is a question I ask a lot! I'll go a few months feeling pretty good & then hit a period of several months feeling bad.

Currently, fatigue is my constant companion. I'm so tired ALL the time. Add to that pins & needles/numbness and pain in my joints/bones, I'm a mess. So off to the doctor I went. Since the beginning of the year, the wonderful Resident that been working with me has been busy!

First, she did a full blood workup on me. It came back showing Stage 3 Chronic Kidney Disease & anemia. So, a kidney ultrasound, urine test & more bloodwork followed. I was put on iron & told we will check bloodworm ever six months.

Next, I was sent to sleep doctor & for a sleep study since I hadn't had one since 2011. From that, I received a new c-pap & my pressure was almost doubled (from 9 to 16).

By now it had been 6 months. I was still fatigued, still dealing with pins/needles & pain. I also was not eating a lot as nothing agreed with me.  So back to the doctor. More bloodwork! This time my kidney disease numbers had improved back to stage 2! I was no longer anaemic & my a1c was so good that I'm no longer had prediabetes!

But, now I had hypercalcemia (high calcium levels). So more testing found out my parathyroid levels were low. Even more blood testing to find out that my parathyroid related protein levels (pthrp) were normal. Now we are just watching my calcium levels.

That brings us up to today. I'm still fatigued. I still have pins & needles and numbness (in legs, arms, face, head). Still having pain in joints & bones. I have also been having some tremors & muscle spasms. I had bloodwork today to check my Vitamin B12 levels. I also have a rheumatologist appointment in November (been waiting since like March on that one!).

So, why do I feel so bad? I still don't know. Fibromyalgia is what they tell me when everything else gets ruled out by tests. Not that it matters much the reason. I still have to push through it & keep going. Still have to take it one day at a time. Still have to cling to my Savior Jesus to carry me through when I can't! I keep moving, keep doing, keep praying, and just keep on keeping on until Heaven!

Why "Near Sanity's Edge" as a blog title!

When I started this blog several years ago, I thought long & hard about what I wanted to name it.  When you live a life with chronic health issues, it often feels like you are going crazy.  In fact, I had one doctor tell me all my symptoms were in my head & not real!

I spent many years not having a diagnosis. Then after being diagnosed with fibromyalgia, I would have new symptoms pop up. Each time, I'd have a doctor so sure I had something that all the tests ruled out. One doctor was sure I had thyroid issues. All the tests were normal. Another one swore I had MS, but my MRIs & spinal tap were normal.  It's enough to drive the sanest person to the edge of sanity!

So, I now had a blog name! Near Sanity's Edge is the place I know quite well! Hopefully, my writing about my living here will help someone else not to fall over the edge when dealing with chronic health issues.

Chronic pain all my life

Chronic pain has been a part of my life ALL my life. Sometimes more than others. 40 years ago I woke up with pain in my legs & couldn't walk. I got better. 27 years ago I was bedridden & overwhelmed with pain for several months. I got better. In between those times & since, I've had ups & downs, lots of new symptoms & plenty of diagnoses.

I've tried about everything under the sun for treatment. Right now I am carbonation free, aspartame free, gluten free. I take prescription meds & use alternative meds too (essential oils, vitamins, etc.) Some things help, some don't & some make it worse. AND what worked yesterday might not even work today.

Sometimes I know what the trigger to my pain is like overdoing it, stress or bad weather. Other times, I have no clue. I could have slept wrong, moved wrong, moved too much, moved not enough, sat wrong, been touched wrong, or who knows what.

I do know that it helps to have people who I can let know I'm hurting, numb, etc. Sometimes just writing out what I'm struggling with & posting it just helps. I don't feel so alone because I know someone has read it & knows what I'm experiencing.

It helps tremendously to know I have people praying for me! I love my prayer warrior friends & family!

I don't write this to complain. I write it to say thank you for praying for me & listening to me!

I write it to let you know that we that suffer chronic pain need your support. We need you to tell us you are praying, to help us sometimes, to bring us a meal once in awhile, to drop us an email/text/letter every so often, to listen & cry with us sometimes, and to just be there sometimes. I know it gets tiresome as we've been "sick" forever. It gets tiresome & lonely for us too. We get forgotten a lot. We don't get the support those with more pressing & more visible issues get.

I write it to say that if you are struggling with pain, it is ok! I struggle too! Sometimes I'm sad, sometimes I'm angry, & sometimes it's ok. I don't know why we are chosen to suffer but I know God has a plan & a reason! We just have to keep pushing on! Let me know if I can pray for you or give you any help or let you know what I've done or am doing to make it through.

*If you made it this far, thank you for reading this!

Unpredictability of chronic illness

Life with chronic illnesses is so unpredictable that it's predictable. One minute you feel fine, the next you are down for the count.

Sometimes you know you overdid, missed a med dose or ate food you shouldn't have. Other times, there is no rhyme or reason to it.

Sometimes you can push through, other times it pushes you right to bed.

Sometimes you can handle it all with a smile & grace. Other times, you are barely making it through. Tears can be a constant companion those days.

And every person with chronic illnesses is different. Their symptoms are different even if they have the same diagnosis. The way they handle it varies widely. What works for you or your friend/neighbor/family member, may not work for me.

Some of us are new to chronic illnesses. Some of us have dealt with it all our lives. Some of us just have one illness. Others of us have many illnesses.

Sometimes we reach out for help. Other times we withdraw. Many of us suffer in silence. Sometimes because we are tired of talking about our issues. Sometimes because we know others are tired of hearing about our issues. A lot of times we remain quiet because our issues are not life threatening & not as urgent as the issues of those who are facing cancer or death.

Sometimes we are grateful that things are not worse. Other times we are angry that a normal life has been taken from us. Sometimes we are sad that we can't do things with our friends & family. Sometimes we feel guilty that we can't do things with or for our families. Other times we feel like a complete burden to our loved ones.

Sometimes we can't see past our pain & the present. Other times we can see the big picture & see our place in God's plan.

Sometimes our symptoms are our biggest issue. Other times the fear of future symptoms is our biggest issue.

Sometimes we are certain we can get & feel better. Other times we are certain things are getting worse & we will never feel better.

The one thing we can always depend on is God! He is our strength through it all. He is our help when the doctors fail us. He is our comfort when no one else can or will comfort us. Even if we have to face our illnesses for this lifetime, we know that it is not for eternity! When Jesus died & rose again for us, we were given eternal life if we accept that He is our Lord & Savior. When Jesus takes us to Heaven, He is giving us a new body with no pain, no sickness! That gives us hope! With hope in Jesus, we can get through whatever our chronic illnesses throw at us, even if it's very very hard!

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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Has it really been 10 months?!

Wow! So much to update you on...

The last year has been rough. In December, I reached my highest weight ever despite barely eating. I was barely eating because nothing would set with me. I was having all sorts of digestive issues & pain. After several tests, it was determined that my gallbladder was not working.

In May, I had my gallbladder removed. Since then, I'm down around 60 pounds. I'm also able to eat more things & have less digestive issues.

I'm still dealing with my fibromyalgia and Raynauld's. Numbness & tingling comes & goes as well as circulation issues (blue fingers, toes & lips). Sinus issues have been ongoing since spring. And hot flashes & other menopausal symptoms have become a constant presence.

Despite all of that, I feel healthier than I have in awhile. I'm pushing through the symptoms & striving to move more, eat healthier & enjoy life. I'm focusing on God & what He has planned for me. I'm trying to remember to focus on Him & not my pain & symptoms.

Stress of life has also been a big factor. Family & friends with major health issues, deaths of family/friends, watching others go through some tough life situations plus major expenses (surgery, van repairs, etc.) have led to lots of stress. My heart has been burdened & my night-waking hours filled with prayers. All this plus some possible major changes upcoming have made this an interesting season of life.

This has been a very rambling post... If you've stuck through to the end, thank you! Will post more later....

 

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Savella Update

So, tomorrow I will be 4 weeks on Savella. I'm totally up in the air about it. Stomach issues are the biggest down side to it. It's not been a magic cure all. I'm still achy. I seem to not have as much fatigue. I feel like I'm just waiting, with breath held, to see if it works. I thought I was losing weight, but now I'm not so sure. Still having the weird face numbness. Still struggling with emotions.

Guess I need to just wait & see...

Will the upset stomach ease? Will the weight start moving off? Will my pain levels ease up? Will fatigue continue to ease up?

In the meantime, I soldier on...

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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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Has it really been over 3 months?!

Wow! Time flies! So much has happened since April. I've started some new treatments that I'm excited about.

A couple friends introduced me to Essential Oils! I'm in love with Young Living's PanAway! Since I started using this, I have not had to take pain pills! It hasn't taken the pain completely away, but helps keep it manageable! I'm looking forward to trying some other oils once I get a little extra money.

I also got up the nerve to start chiropractic treatment. As I suspected, my spine was very misaligned! I've been 5 times & I'm a believer! After my 2nd visit, I walked out with NO pain in my neck. Now, I was really sore by bedtime & had to ice my neck. As my chiropractor, Dr. Kevin Storm, works on getting my spine in alignment, I am feeling better & better! He is also working on my tight neck & back muscles. Tight muscles have been a big complaint of mine. Between treatments & the exercises he has given me, I'm feeling more relaxed.

But, that is not all that's new! Dr. storm is also doing accupuncture on me! I've had 2 sessions so far. After the first one, I was a little sore & was very tired. After the second, I walked out pain-free (for about 12 hrs or so) & had lots of energy! I was able to weed my garden & still had energy to spare.

I now find myself looking forward to my treatment days. Each time I leave feeling a little better & the effects tend to last a little longer each time!

I know these new treatments will not cure my fibromyalgia. But I do feel certain they will make it more manageable & will give me more good days than bad! I am just praising God for opening my eyes to these alternative treatments! I was so resistant to them. They have been an answer to prayer! I'm excited to see the progress I make toward getting healthy! I now have hope that I can increase my activity level, which will lead to some weight loss!

So keep checking back for updates!

 

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Sometimes we overdo!

The balance between pushing ourselves & overdoing is a constant battle when you have fibromyalgia. You have to constantly be thinking "Is this the activity that will push me over the edge?" But sometimes, you have to choose to do an activity that you know will land you in bed. Why? Because you want to be with your family & make memories with your kids.

This past Thursday & Friday, I made that choice. We had the opportunity to visit Washington, DC. If you've ever been to DC, you know that it entails lots of walking!

On Thursday, marked in red, we walked several blocks from Metro to Ford's Theatre & Peterson House. We toured both sites & museums. Then we hopped Metro again to Arlington National Cemetery. We walked all over the cemetery (lots of hills). Then we walked from Cemetery across Memorial Bridge to Lincoln Memorial through several monuments & to Metro on National Mall. We figure we walked a good 5-6 miles.

On Friday we walked less outside, but more inside the National Archives & Smithsonian National Museum of American History, marked in blue. I was exhausted by this point & had to sit a lot! I missed out on seeing a lot of the exhibits with my Hubby & kids.

By Friday night, I was exhausted! It took several days to get back to normal. I try really hard to push myself to walk & keep moving. But sometimes I wonder if it would be better to have a wheelchair, at least for those times I know we are doing a lot of walking, like sightseeing & conferences. Where is that line? Where do you push through & where do you admit you need a wheelchair in order to keep active?

 

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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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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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