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.

Posted with Blogsy

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....

 

Posted with Blogsy

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...

Posted with Blogsy

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.

Posted with Blogsy

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!

Posted with Blogsy

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!

 

Posted with Blogsy