My Journey with Chronic Illness

Looking thru the Clouds

Cloudy days are just that. Cloudy. Dull. Boring. Thick. Blocking the sun. I need sun. I wish everyday could be filled with sun with no clouds to be found. BUT everyday is different. With Chronic Illness you have to realize that there will be days that the clouds are thick, and trying to see thru them feels impossible. Honestly, those days suck. Honesty at it’s finest. You’re welcome. 🙂

The past 3 days I have had severe fatigue. The type that when you use any part of your muscles you have used up your energy. I’m functioning at about 50%. I’m getting the bare necessities done. I’m struggling trying to see thru the clouds. Could be any number of things that is causing it – new meds, the weather, a flare. I just never know. My body is telling me something isn’t right. Somewhere. It’s like trying to find that needle in the haystack. The clouds are getting thicker and the needle is getting smaller.

Having my devotions today and reading in my Jesus Calling Book Christ showed me about looking thru the thick clouds – “Imagine gazing through a dirty window into a gorgeous, sun-drenched garden. If you focus on the dirt that’s on the glass, you’ll miss the exquisite beauty of the garden.” What, what!!! He so told me, didn’t He?! I don’t want to miss the beauty. But how do I see thru the clouds when they are so thick? When it is so hard to see anything?

First, let me say it’s taken me a while to get to this point. It doesn’t happen overnight, and I’m still human so I still have times that I tend to feel sorry for myself. However, I have learned that if I can get my mind off of what I’m going thru it definitely helps me. I know journaling/blogging has done a world of good for me. To write down honestly what I’m feeling/going thru helps me sort out things in my head. Listening to uplifting music also helps me. Doing for someone else, if I’m physically up to do so, also is another way.

Second, you can’t just do it once. It has to be a repetitive thing. To cling to Christ daily, to refocus your thoughts, and to seek Him with ALL your heart. Not just a portion. By seeking Him He will show you where to look thru the clouds, on those sucky days, to be able to see the exquisite beauty of the garden, even if it’s just a glimpse. Sometimes those glimpses is all we need to get thru the day. A glimpse a day keeps the suckyness away! LOL! 🙂

May this scripture help you today!!! #KeepOnDancin #ChronicIllness #Hecanrollthecloudsaway 🙂

Listening

Such a busy past week! Company came in for a week, Easter was upon us, and my husband had an outpatient surgery a couple days after that. Needless to say my body said “I can’t go on!” after almost of week of non-stop going and doing. And so I heard and listened to what was being said to me. Knowing that I could not continue until I just rested for a whole day, or two. 🙂

It’s odd that we can hear without really listening. I will do that with my husband, or daughters, while they are talking without really knowing it because my mind is racing onto other things or being distracted. If I’m in a brain fog I can’t even concentrate on what they are saying. I know the later I can’t control, but if it’s something I can I have to stop and be intentional on listening what they are saying. If I don’t then I’m in the dark on what is being said or have been said. (Gulp, I do this a lot!!)

Intentional – done on purpose; deliberate

If you have Chronic Illness you know when your body is talking to you, and you have to listen to it’s whispers (unfortunately some times screams!) at you to get your attention to stop and rest. If you don’t then you pay for it. There is no one to blame but yourself. You need to be intentional on really listening to learn the signs what your body is saying.

I have also learned this with following Christ. Because He doesn’t always talk to me with loudness. Mostly He talks to me in a quiet, soft whispers. I have to be intentional, deliberate, on listening, without distractions. To get away from all the noise to experience His wonderful presence. His peace. His calmness in the chaos.

I hope that you are listening to the one who knows you best. The one that only can give you peace that is needed. The one who loves you unconditionally and wants to whisper sweet nothings in your ear. Be intentional.

“And after the fire came a gentle whisper” 1 Kings 19:12b

Suffering

Definition of Suffering: noun: the state of undergoing pain, distress, or hardship – or the verb: be affected by or subject to (an illness or ailment). Either way you look at it it’s no fun!

There are some who think that if you are suffering, of any kind, that you have some type of sin in your life, or maybe your parents have sinned and it rubbed off on you. Sort of like cooties. 🙂

Well I know for sure that it’s not true, and here is the proof in the pudding – John 9:3 reads – (Jesus is talking to his disciples about the blind man) “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”

Those of us that deal with Chronic Illness feel as if we are doomed in the suffering. That there has to be a reason(s) for it. We ask the questions – Why me? What did I do to deserve this? What does the future hold for me? How am I going to handle this? Is this all I have to look forward to for the rest of my life? You know, the poor me questions. And yes I have ask these questions. Some more than once.

After asking the questions, getting no answers, and going thru all the motions of daily living I finally received the answer. It was like my eyes were open one day after many months of illnesses, inconclusive tests, diagnoses, and feeling so overwhelmed with my health that God spoke to me – more like whispered to me – thru the verse John 16:33 – “I have told you this so that you will have peace by being united to Me. The world will make you suffer. But Be Brave! I have defeated the world!” GNB Version (I love this version!!!)

The words BUT BE BRAVE really spoke to me! It was like He was whispering to me that He’s got this and that all I needed to do is Be Brave thru it all! Excepting what I can’t change and allowing Him to use me thru the suffering. To to be there for someone else in their suffering. And just like the blind man God would use my suffering for displaying His faith and to give Him the glory thru it. And thru it all to have peace. That was the ultimate feeling that I needed, and He’s timing was perfect. All the questions just melted away.

So, now instead of asking all the Why’s or How’s, my questions now are – “How can You give me strength thru the suffering, how can You give me a clearer perspective on what is happening, and how can You shine thru me during all of it?”

Most of all I cling to Him and the Peace that only He can give. I hope that you can cling to that Peace as well. 🙂

Beauty in the Battle

I love, love, love Springtime!!! With everything blooming and coming to life it brings happiness in my spirit! However, not a fan of pollen, but you have to take the bad with the good. Which is a battle. Also I love spring because it brings warmer temps (in Oklahoma) and it does my body good. Overall it’s a win win. 🙂

It also brings Easter. Another favorite of mine, focusing on Christ’s death and resurrection. Reading scripture about the pain that He went thru upon the Cross, and even though He pleaded with His Father to take the “cup” away, Jesus stayed focused on God’s Will while enduring all the sins and pain of the entire human race. Oh, what love and selflessness!

At this time my flares/pain are minimal (Praise the Lord!) but my self-esteem as been falling. This is my battle right now. I’m not sure why, but it has been lingering for a while now. The enemy is standing or sometimes crouching, depends on his mood, waiting on the perfect time to try and counter attack me from what God’s word tells me.

It makes me wonder – Did Jesus go thru self-esteem issues? Did He feel like He had the “right stuff” to carry out His ministry? Did He think He was worthy to die for the whole world? To carry all weight of our sins and take them to His Father for forgiveness? If He did, how did He focus on His Father for strength, find His worth for what He was called to do. Did the enemy tried to feed Him lies telling Him He just doesn’t measure up? Questions I ask Him thru out my day.

I do know by Jesus keeping to the plan, God made beauty out of the battle that was going on inside Jesus. God’s reminder of how He loved the world that He was willing to give His One and Only Son – Jesus – to conquer death, forgive our sins, and to give unconditional love to the world. God surrounded Jesus on all sides already fighting His battles, whether on the outside or the inside.

Even thru my self-esteem issues God surrounds me, showing me that I am loved and I measure up perfectly in His eyes. He’s fighting for me and there’s beauty in the battle!! He is answering my questions all around I just need to keep my focus on Him thru it all! AMEN!!! #fightingmybattles #beautyinthebattle #KeepOnDancin 🙂

Up For The Challenge

About 3 weeks ago we lost our beloved 13 yr old lab mix, Bob. After a week of mourning I knew it was time to start looking for another dog. We have a 11 yr Italian Greyhound but she is blind and can’t go on walks. With Spring approaching I wanted to get a dog to start training to go on walks. So the hunt began!!! I had a criteria about what I wanted and didn’t want. The new family member had big “paws” to fill!!!

After a week we did find a puppy. Mind you that was one of the don’ts on my list, but his eyes spoke to me! (He is a 4 month old Lab Mix with Brindle coloring, and his name is Jasper). We got him home and settled in. After a day I knew that he would be a handful. In that moment the question came to me, “Are you up for the challenge?” Of course I said Yes (after telling Jasper NO for the millionth time!!). 🙂

The question become a search, if you want to call it that. I thought about all that I’ve gone thru in my life. Some good and some not so good. Some of those challenges have been rough either in depression, disappointments or discouragements.

Each of us have challenges. It can be a day challenge, months, or even years. Sometimes we see the outcome, and sometimes we may not until we search where we were at those times of challenges, and see how we have come thru them.

That’s how it is with Chronic Illness. It has come upon us as a daily challenge. Not wanted but given to see if we are going to answer that question, “Are you up for the challenge?” Hopefully after we have dealt with the pity party for ourselves and the why me syndrome, we can answer that question with a BIG OL’ YES! But only by the Grace of God do we get thru them, and even if we don’t get thru them very fast (our pace not His) we still know that He is with us during those challenges. He is giving us the strength to get thru today, especially on the very challenging days. The days that you just don’t think you’ll ever get thru. I’ve had many like that, and I know I’ll have more, and so will you. BUT what gives me Hope is that Christ is right there with me. Maybe, for me, all I needed is a puppy and a question to put things into perspective. 🙂

“Give ALL your worries and cares to God, for HE CARES about you.” 1 Peter 5:7

#HOPE #Strength #ChronicIllness #KeeponDancin #AreyouupfortheChallenge

Weariness

Weariness. It’s a overpowering sense of heaviness in both my mind, body, and soul. It usually lasts about 3 to 5 days. It’s sort of like depression but not that deep. I know that sense very well and have to keep an eye on that. But this can hit out of know where. Causes can vary. Medication. RA. FM/CFS. Combination of them all. It has to run it’s course. I know this but I still don’t have to like it. It takes all I have to make thru the days that it last. And of course it hit me last week. Oh the Joy!!

Oh, how it would be if others can just be in my skin when I’m going thru it. My wonderful hubby knows the sign, and will acknowledge he knows I don’t feel “well”, but even with that he still doesn’t understand it. Others just don’t get it when I say that I don’t feel well. How can they unless they themselves go thru it.

I stay home most days. Venture out when I feel that I can, but even with that I’m not up to even 75% of my “normal”. I recently heard the song “Just Breathe” by Jonny Diaz during this time of weariness, and the line “Let your weary spirit rest” really resounded in me. Maybe during these times I need to just let my weary spirit (body) rest. Instead of fighting with it and doing all the wondering of what’s going on within me I just need to breathe and let the Holy Spirit fill me. With His Strength. With His Rest. With New Awareness. To accept it. Knowing that Christ will fill me with what I’m needing and another new day will come with more than I need. I don’t have to understand it, just to breathe it in. Others will not know what is going on inside of me BUT Christ knows because He made me.

“He gives strength to the weary and increases the power of the weak.” Is 40:29

May you be able to JUST BREATHE during your weariness.

Security

SECURITY: the state of feeling safe, stable, and free from fear or anxiety

I’ve been thinking about this word lately because of situation with the Healthcare system. One side pointing to the other side saying they cancelled our policy and visa versa. Doesn’t matter who did what we just want answers. So here we wait. Waiting on someone to do their job in reinstating us so we can have insurance. Waiting for someone to push the right buttons on their computer screen. Since I think someone pushed the wrong button at the beginning of all of this – DELETE! Makes you wonder doesn’t it, who has all of this power in just one touch, mistake or not, in the tip of their finger.

We’ve only had insurance for a couple of years but boy does that make a difference on our way we think about going to the doctor and running tests. Because face it, those of us with Chronic Illness have lots of blood work done and tests run. So there lies that secure feeling of having help with the medical costs. Because before insurance we paid out of pocket for a very long time (we’ve been married almost 39 yrs and most of that has been without insurance).

Back to the thought of security. Who or what has your security? Financial security Relationship security? Physical security? You can add whatever comes to mind for you. For me I had to stop and think where mine lies at. For me it is in Christ. Even all the IF’s come with sickness or disaster, I need to remember that His security is above all else in this world. No matter how bad the situation may be He is there beside me, taking care of me. And yes, even if the costs are outrageous He will still be there. Either to heal me, or to give me direction on how to take care of what’s ahead of me.

I looked up the word security on a website I go to, to find scripture – OpenBible.org – it has 89 different scriptures that represent security. The one that really stood out to me is Ps 61:3 – “for You are my safe refuge, a fortress where my enemies cannot reach me” (NLT). In the MSG it says, “You’ve always given me breathing room, a place to get away from it all, a lifetime pass to Your safe-house…” It’s nice to have all the other securities in our life, BUT it’s not the main one for us to cling to. Security in Christ is what matters above all else. Period.

May you have that sense of the true security. #ChronicIllness #RA #FM #CFS #Hope #SecurityinChrist #KeepOnDancin 🙂

Choices

I haven’t blogged in a couple of months. With the busy holidays also came sickness. Which is not a good combination. Happy times came with good days, but also came conflict with my mother, which caused hurt and anger. This has been an ongoing struggle in our relationship. We are both very stubborn women, so therefore it causes problems.

We all make choices. Everyday. Some are mundane. Some for our good. Some not so good. Some are for peace of heart, mind, and our health. The choice I have made is to remove myself from this relationship for awhile. It has happened before, but not by my choice. At one point in our relationship we didn’t talk for a year. Even though I tried for a few months and got no where. I finally had to take my “hands” off of it and allow God to work. This time I heard God tell me to keep my hands off of it and let’s see how this plays out. So that’s what I am doing. His Will not mine.

I don’t talk to much about this with some because frankly I don’t want others “professional” opinion of what they think I should do. I know some mean well, but that is not what is needed here. Especially when they don’t know what has happened in the past, and that’s ok. That’s where it needs to stay, in the past.

For me, in this stage of my life, I need to take care of myself. That doesn’t mean I forget to pray for my mom, or it doesn’t mean I don’t care/love my mom, it just means I need to keep my distance. IF she reaches out to me I will be there. It’s just not going to be me to do the reaching out this time. That’s the choice I have made for myself.

With those of us who deal with Chronic Illness what we need to make is those hard choices. We need peace, and less drama, to help us on our day-to-day journey. We have a lot on our plate to deal with, and it’s ok to think about ourselves at times.

I hope you are strong enough in your walk with Christ to make the hard choices that you are needing. If not I pray that you sense Him helping you to make those choices. Stand firm in Him.

“If it is possible, as far as it depends on you, live at peace with everyone.” Rms 12:18 NIV #Choices #WhatdoesPeacemeanforyou #ChronicIllness #Hope #KeeponDancin

Love me some side effects

Not all body systems are created equal. With that statement being said I will explain. My body has been made to reject a lot of different medications. I am what you call a very sensitive patient to most medications (I think that needs to be a label on all my charts so the Dr’s know without being surprised when they get an email from me saying I’ve had a side effect). I remember trying Mobic for the first time and it immediately closed up my throat! Very scary! So when I do get on new meds first thing I do is read the side effects and let my husband know just in case something comes up. He likes to joke and tell others, “If there is a side effect Trinda will have it!” And unfortunately I will. 😦

After going to my Rheumy last week and talking to him about how I was doing with the Humira (been on it for 8 months now) and some developments with being on it, it seems now that my body is building up resistance with it. So now I’m trying another med (Methotrexate) to go with the Humira. And of course the first 48 hrs I felt really felt mentally off with it.

Discouragement set in when I left the Dr’s. I felt as if I just went back two steps. Of course others just couldn’t understand why I felt discouraged. But unless they go thru it they aren’t going to get it.

Took a couple of days for me to over the discouragement and to accepted that I have to try this new medicine to see if it will help with the other. Sometimes acceptance is the best thing you can do for a Chronic Illness. And being grateful. Grateful that I have a Dr. who is trying to help me thru this, which I know that isn’t always true for others, and that I do have the resources to have meds. I am also grateful that God made me and He knows what my body can and can’t handle. He also knows my discouragement and I am deeply grateful that He is beside me thru it.

I do hope that you can see that even thru all the “side effects” of Chronic Illness you can have a deep gratefulness for all that God is giving and doing on your behalf.

“He energizes those who get tired, gives fresh strength..” Is 40:29 MSG

#ChronicIllness #RA #sideeffects #KeepOnDancin #Hope #Grateful

Another One of “Those” Days

With Chronic Illness there are always one of “those” days. Unfortunately I’ve stopped counting because there are so many. How about you? How do you handle those days? Rest? Meds? Prayer? Support of others? All of these?

What about a new diagnoses to add to a long list of other diagnoses? I recently went thru this, again. I have had a numbing/tingling from the left side of my face down to my foot now for several years, but with the past 6 months being stronger than ever. Finally went to a new Neurologist who did the initial office test and told me then that he saw I was having some difficulties. Ordered a EMG Test, which is a conduction test to see how your muscle/nerves react to stimulus. It showed Peripheral Neuropathy. With that comes more blood work to try and figure out why it’s happening. Nothing shows. I’m actually not to surprised. It happens a lot. When I do get a diagnoses I’m actually giddy! With all that has gone on and no answers, that when I finally get something I’m happy. I know that sounds sort of morbid, doesn’t it? But can you relate? I’m glad I’m not the only one. 🙂

Even if I get overwhelmed with all the diagnoses I’m coming to understand that I am not doing this by myself. That even thru another one of “those” days, thru all the pain I deal with on a daily basis, thru all the unknowns of each and everyday, I know that Christ is with me even thru it all.

I’m sure by now in my short time of trying to write a blog you see a pattern. Christ. Not that I’ve arrived to some holy sainthood, BUT that Christ is in the center of all that I am and all I am going thru, and will go thru. Always in the midst of another one of “those” days. Because I know/believe that He gets me thru those days. Each. And. Every. Time.

“I call to God; God will help me. At dusk, dawn, and noon I sigh deep sighs – He hears, He rescues.” Ps 55:17 MSG

#Hehears #Herescues #Hecares #KeepOnDancin #OneofThoseDays #forGodisgood #AllTheTime