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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