Category Archives: Chronic illness

Reflections in My Mind

Psalm 119:169-170 New Living Translation (NLT)
169 O Lord, listen to my cry;
give me the discerning mind you promised.
170 Listen to my prayer;
rescue me as you promised.

I miss working daily.  I don’t miss rising super early while it’s still dark outside, with little traffic to speak of, but I do miss the daily conversations with co-workers and vendors/customers.  I don’t miss working on holidays or funky schedules because of the type of job it was, but being an extrovert and conversationalist, it’s difficult day in and day out to not talk to people, other than your family members you live with. Don’t get me wrong, I love my family.

I don’t miss being in such severe pain that I would cry every day as I limped to my vehicle for the 10-minute ride home.  I often wished my drive home was longer because this was the only time I had to myself throughout my day. Being a people person; never meet a stranger type gal, I still need quiet time for me.  And since retiring with a disability, the only time I get for myself is when I sleep. (I did have one day over the weekend where my husband took the two children for the day to visit other family members and it was very appreciated!)

There is always someone with me. I am very thankful to have my husband with me, as we continue to grow older and blessed that I get to spend all day with two of our grandchildren and our daughter, but there are moments when you just need your own space. And if you are a parent, then you know even going to the bathroom usually means there will be someone following you in to talk with you or “hang” out.  I never fully understood until I had children of my own, what parents meant when they said they couldn’t even hide out in the bathroom. Our children are grown, but inquisitive toddlers don’t understand their presence is not needed every time.

I used to read three to four books at a time, and now I am lucky to get through one chapter of a book in an entire day!  I miss reading like that.  Just immersing myself in a story, envisioning the characters and the scenes, gripping the book in my hands with a feeling of ‘I know I should go to bed but I can’t put it down just yet’ or ‘I’ve got to see how this ends’ mentality. Now I just pray to make it through one chapter and hope that by the time I can pick the book up again, I won’t forget what I read and have to start it over.  It’s so frustrating how my brain has changed since I retired due to my fibromyalgia and other health conditions.

I look back at where I was in 2016, leaving a job of 16 years, with no plans except trusting God for everything, to where I am now and a whole lot has happened in the short amount of time, but Jesus has carried me through every single situation. He has been my strength, my provider in more ways than one, and continues to be available for me every single second of every day.

art artistic black and white blank

Photo by Lynnelle Richardson on Pexels.com

*I was approved for my Social Security Disability within a few months of applying, for the first time on my own. No denial or a need to get an attorney to help me fight, which is all I heard from people when I said I was going to apply.

*Available to help our daughter with her son, after he was diagnosed with Autism Spectrum Disorder as he needed substantial support and constant supervision. Read everything I could get my hands on to learn about ASD and did my own type of “homeschool” to help him(this would not have been possible if I had been working full time).

*I wrote and self-published a book about the Jesus and His mercy and grace.

*Met others that live with the same type of health conditions I have so we can offer one another support and encouragement.

*My faith increased as I saw God’s hand in my life and the lives of those I love.

*Drew closer to the Lord through trials and tribulations of going from having an income to no income to a fixed income and thankful for pantries and organizations that help when you need it.

I’ve been blessed to witness so much in our grandson Tyson since his diagnosis in 2016. He was nonverbal. Now he is speaking. He made no eye contact or engaged with others, now he is doing better. He lived in his own world, and now he lets us in.  Every victory, big or small, is celebrated. And when I look back at to where he was at 26 months to now, I am so thankful God has placed the right therapists, doctors and medical support staff in our path.

I’ve sat with my husband at doctor appointments for myself and him, as we navigate the many health issues we have and I am thankful I was able to do that for him and not wonder what is going on, as his memory isn’t what it used to be.

I have seen our older grandchildren blossom into thinkers and doers. Always being kind and helpful to others. Moments that I would have missed had I not retired. But early retirement comes with a price. When it’s not planned and you have no life savings or retirement funds to look forward to, there is always the concern that what will happen if there is an emergency or a crisis.  Even in those moments, the Lord has seen us through.

I miss having a steady income stream. Or should I say I miss my hourly rate of pay? If I were to figure out my monthly disability income as an hourly wage, I would be making a lot less than the federal minimum wage.  And that 2% cost of living increase the federal government was so kind as to give people that receive social security doesn’t even begin to cover anything. But an increase is better than a decrease I guess. Receiving benefits once a month versus weekly or bi-weekly truly teaches the value of money and what you spend your money on.  Going to the movies, out to eat, bowling, museums, etc. that is a rarity. Trying to explain to children why they can’t have a $3 happy meal is difficult some days, but it is not the end of the world. Life goes on.

The one thing I despise is having a chronic condition and going to urgent care or emergency room because the pain you have is something out of the normal for you and if they know you have an autoimmune disorder, many tests/scans that might be done for a person without a chronic invisible illness, presenting with the same complaints and symptoms, isn’t even considered or done because of the chronic condition you have.  Why does the public or medical personnel think that every person with chronic pain related condition is seeking out drugs or medications for pain relief??? Sometime’s all you want is an answer to why you are feeling so poorly and wanting help.  You know it’s not the same kind of pain you live with day in and day out, but once they hear the F word (fibromyalgia) it’s chalked up to that and nothing is done. I know why, so you don’t need to tell me, it really was a rhetorical question.  Because there are many people that have cried wolf one too many times and makes it bad for the rest of us that truly do need help.  I don’t take any kind of pain medication that I can’t purchase over the counter from the pharmacy.  I can’t due to another health condition.

Prayer and focusing on Jesus and His Word carries me every day. I could complain all day long, but it won’t help me feel better.  It will actually suck the life out of me. Focusing on how blessed I am and how thankful and grateful I am makes me feel better, even on pain filled fatigued days.

Yesterday was a pain filled day. It didn’t start out that way, but as the day progressed, the severe muscle spasms that come when they feel like it and leave the same way, almost debilitated me yesterday.  As I was trying to reach something just out of my reach, they started in my abdomen, worked their way under my ribs on both sides and into my back and shoulders.  When these hit, there isn’t one thing that makes them better.  Lots of little things I try: stand up, bend over and hang in that position for a while, press firmly on my sides, try massage, ice packs, heating pads, a lot of breathing in and out slowly much like a woman having contractions in labor. I wish I could just walk them out similar to leg and foot cramps, but I am at the mercy of my body. And as they relaxed to a dull ache, and not a stabbing pain, I was finally able to lay down and rest. I hate when I have days like that. I’ve been dealing with these stupid spasms for over ten years. No one knows why they happen, or how to prevent them. I’m not low on magnesium or potassium, it’s not my heart, it’s just one minor inconvenience of having fibromyalgia.

I do take a supplement that helps with overall pain, but it’s not a cure-all for all my pain.  How I wish it was. But I am very thankful to have it as a tool that I use daily.

I am in the process of listening to the Lord and seeking guidance on writing another book. Not sure when it will happen, if it will happen but I feel a tugging on my heart to do it. I know God gives us the desires of our hearts and the gumption to achieve them.  I am still waiting to discern the topic for the book. My thoughts are jumbled and my spirit believes it has to do with His might and our worth in Him, but forming the words into sentences that make sense and will help others know Him more intimately, are still randomly bouncing around in my mind.

Our homelife recently changed, as our granddaughter Emmalin made her presence known. We are adjusting to having a baby in the house again and loving the fact we can see her daily, but how easy we forget the demands of a new babe and they have no sleep routine yet. They are more powerful than they realize. It’s all good.

As for reading, I am currently reading a book called The Autism Answer by Dr. Frank Lawlis. I will let you know what I think if I finish it.The Autism Answer by Dr Frank Lawlis

It’s only 122 pages long and years ago, I could have read that in a few hours. I have had it since last Friday and only have made it to page 11! So, maybe if the stars align, and Tyson is having a good day, and health problems don’t arise, maybe I will finish it before summer time.

I know this post has been all over the place, but that’s where my mind is today. My husband is having some health issues without any kind of answers and I will not say I am worried because worry gets you nowhere.  I am concerned that no answers of any kind seem to be attainable right now, but I will continue to press into the Lord and seek his guidance and wisdom.

May you know how much Jesus Loves You~right now and always. Jesus can turn any mess into a message and any test into a testimony. #HopeAlwaysHaveFaith

Blessings ~ Carlene

 

 

 

 

 

 

 

 

 

Advertisements

Faith Can Move Mountains

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

John 16:33 NLT

person on a bridge near a lake

Photo by Simon Migaj on Pexels.com

 

I read the above verse, and I am reminded that I have the  Holy Spirit with me. He dwells within me and I know that without Him, I wouldn’t have made it this far.  Each approaching new year, there are always goals/visions/hopes/dreams we each have. Some people make New Year’s Resolutions, others choose to make lifestyle changes, dietary changes, relationship changes, and some choose to just look at it as another day and keep putting one foot in front of the other.

I look back over the past 12 months and I have seen a lot of hard behaviors to cope with, on a daily basis. Keeping the peace of Jesus in my heart and alive in my life has been nothing short of a miracle; many days I wept inwardly, wondering where that Peace was. How had I went from being able to handle almost anything that required coping skills, to being in constant prayer and conversation with my Maker because I felt I was losing my grasp on His Peace. What had gone so awry that I felt lost and alone, in a room full of people? And then I realized that I was relying too much on my own strength and not relying on His.

In our home, we have many medical diagnoses. Four of us live here, soon to be five give or take 6-7 weeks if our soon to be (second) granddaughter waits until her due date to make her arrival.  I personally deal with fibromyalgia, chronic obstructive pulmonary disease, sleep apnea, degenerative disc disease in my lumbar spine with facetous arthritis, osteoarthritis in my hip/knee joints, carpal tunnel syndrome, thyroid disorder, high blood pressure. Plus I live with people who suffer from depression/anxiety/heart/stroke/language disorders, autism, adhd, sensory processing disorder, epilepsy, and mental illness.

Keeping track of medical appointments, therapy schedules, labs that need to be completed in a timely manner and pregnancy-related appointments, just about makes my head spin; dealing with IEP’s and developmental delays….the list goes on.  If only one of us is having a rough day, we can manage pretty good; if all of us are having an off day, it’s a true struggle.

It’s remembering that I was not created to do things in my own strength.  I have heard, as I am sure you have too, that God will not give you any more than you can handle and there have been days I have questioned that statement. But the Truth is, God doesn’t expect us to handle anything on our own, but to turn to Him and rely on Him.

And while in the midst of my cries to the Father, seeking guidance on how to proceed with this life He allows me to live, waiting on His answer is always the hardest part for me. In the past two years, since retiring early due to disability, I thought for sure I knew the path He would take me, but it has been such an amazing and frustrating journey, that He only gives me glimpses of what He has called me to do. Just enough to take that next step of faith. I can only imagine that if I were to see the entire picture of the plan He has for my life, it would be so all-consuming, overwhelming that I might crumble at the thought of it.

In His infinite wisdom, He knows what is best for each of us. He provides for every need. It may not be the provision we envisioned, or even hoped for, but He always gives us just the right words, at just the right moment. And yes, He answers prayers. Some days it’s “Yes, my child.” “No, not now.” or “Wait, it’s not time for you to know yet.” In His perfect timing. I have learned not to pray for patience because patience always requires testing of some kind; so I pray for peace to get through those times.

Every single solitary thing we go through in life refines us into the people God created us to be. Some are very exciting and mind-blowing, others are so sad and sorrowful, we want to skip that process, but every single second of our lives, He is working in us and for us. And the grass always seems greener on the other side of the fence.

I love my family more than my own life. I don’t like when we are nipping at one another, or being grumpier than normal, because it tears me up inside. I guess though, that since we are human, that is bound to happen from time to time.

I’ve been in my own world for weeks now. A close dear friend is fighting the battle of her life with a cancer diagnosis and no definitive results yet on exactly the type of or the best type of treatment for her. And when I think of all she has been through, what her family is going through daily, I give thanks because my problems don’t seem so out of control as they feel. The strength and courage that she has shown, in living out her faith and trusting in the Lord brings joy to my heart and encourages me to look for every single blessing I have or blessings I have overlooked.

1 Thessalonians 5:16-18 New Living Translation (NLT)
16 Always be joyful. 17 Never stop praying. 18 Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.

Whatever mountain you are facing in your lives today, please know there is a Savior that would love to hear from you. He is always available. He is always listening.

Jesus can turn any mess into a message of hope and any test into a testimony.

May you know how much Jesus Loves You~right here-right now!

#HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

 

 

 

 

Moving Slow in a Fast-Paced World

Philippians 4:11 New Living Translation (NLT)
11 Not that I was ever in need, for I have learned how to be content with whatever I have.

I used to walk relatively quickly when the need was there. Now my only hope is that I don’t trip or fall while walking. There is no quickness in my steps anymore. I miss that. I miss being able to take walks without being in pain and needing to sit down every 10 minutes or lean on a shopping cart if “my helper” is not with me. I totally dislike the fact that I require “my helper” more times than not. “My helper” is my rollator walker, with a built-in seat and storage basket. It weighs about 20-30 pounds and because it is made for a large person like myself, although it does fold, it still takes up precious cargo space and strength to haul it in and out of a vehicle.

I rarely go to the store alone anymore, not because I wouldn’t enjoy a break without family members going everywhere with me, but because if I have to purchase more than one or two things, I do require assistance. If there are no electric carts available, then I need “my helper” to maneuver through the store and be able to take multiple breaks to relieve the pain and pressure felt throughout my body, mainly in my lumbar (lower) spine area. Leaning on a shopping cart is the last resort, as it does not dimish the pain, but at least I have something to hold onto.

My husband has multiple names for “my helper”. And I truly do understand his frustration. When we travel anywhere, far or near, I need it. There are times I fool myself thinking I will be ok with just my cane, but if I were, to be honest, my cane doesn’t provide the same type of support the walker does. And can cause more pain because of instability; my muscles tense up which then lead to spasms, which are far more painful than if I had just chosen to use it.

Going shopping is always a planned event. Where are we going? Will “my helper” fit through the aisles. Yesterday we shopped at a local store, and I didn’t think we would make it through the store. It was busy. It’s that time of year, the aisle ways are only made for one person with a cart to go through, wall to wall people, stacks of merchandise everywhere, but we made it. Almost everywhere I go, that I will need assistance in maintaining my mobility requires planning.

Rollator Walker
My Helper on Hard Days

There were many sporting events and band events that our grandson participated in this year, that made it impossible for me to attend. That is when my heart breaks.  I want to be a grandmother that can support and cheer on my grandchildren and encourage them in all they do and some things I just can’t because of the disabling conditions I live with.

I’m thankful I had the foresight to purchase this before I retired due to my disability. It’s large and bulky and irritating that I must rely on it, but I am not ready to stop living and be relegated to my home for the rest of my life.

Even with this tool, I still move slowly. In my mind, I am walking at an amazingly fast pace and then I look over at family members I am with and realize I am still slower than most people because I have been left in the dust. I am always playing catch-up. But I am still moving. Ever so slowly.

The Lord has placed people in my life that remind me that I am very blessed. And while I need to work on being content with using a walker on a daily basis, I know that He will help me overcome the fear of what other’s think when I use it.

So are there areas in your life where contentment isn’t what you thought it would look like? Or areas you hope will be better one day.  Remember that while life may not turn out like we envisioned or dreamed, we are still living and breathing.

Jesus Loves You~right where you are~at this moment.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Until next time~blessings to you~Carlene

 

 

 

Daily Life Struggles

Proverbs 15:15 The Message (MSG)

15 A miserable heart means a miserable life;
a cheerful heart fills the day with song.

 

With joy in my heart, I still struggle.  Joy comes from the Lord and no one can take that from me. I can choose to live with a joyful heart and know that I will still face many struggles and trials, but still, love and be the person I am because God has placed Joy in my heart or I can choose to live without joy and be miserable always.

Over the weekend, the fibromyalgia flared up and reared its ugly head. The constant pain that never fully leaves, but some days are so rough, that just breathing and moving, make you question if getting out of bed was the right thing to do. And knowing that if you choose to remain in your bed, how many things will face you to take care of once you arise.  Most of us that have fibromyalgia know that sometimes the best we can do for ourselves is to stay in our beds or the comfy places we have carved out in our homes. We do not have the energy to get dressed, shower, or do any extra. Getting up takes every ounce of energy just to be able to spend time with our families, and going anywhere is totally out of the question. That was me on Saturday. I showed up, in my nightgown and I stayed in my nightgown all day. I KNEW I was not going out into the cold for any reason and I saw no point in causing myself more pain to get dressed simply because that was expected of me.

I have dealt with FM for 10 years. And for the past year, it has been manageable. But for the past several months, I have noticed since stopping the natural supplements I was using, my inflammation throughout my body and the pain levels have been increasing again.  I choose to work through my pain in prayer and time with the Lord. Limiting what I do. Staying in more than going out and while dealing with my own health battles, helping our grandson through his.

He has come a long way in the past two years since being diagnosed with Autism Spectrum Disorder. He talks now. He is becoming very independent, but also very demanding. He is four. When he wants something, he wants it now. And even though he asks for something correctly and always says please, he does not understand when he is told no.  He tries again, to word it differently or even smile and say please and sometime’s the answer is still no. I know it must be confusing, because he is being polite, and saying please, but simply does not understand that even if you do everything right, sometime’s the answer will still be no.

So imagine being in such excruciating pain, that you do not want anyone touching you; let alone a four-year-old jumping on you, bouncing into you, climbing on you, but you don’t dare say no because you don’t want to make him feel unloved. He doesn’t understand what it means when I say “that hurts” or “please don’t do that”. And he loves to give big hugs, he loves deep pressure. He loves climbing behind me on the sofa and me leaning back on him, but all I want to do is cry because every amount of playtime for him is pain time for me. But I do it because this brings him comfort and joy. Love is powerful that way.

I left my home on Sunday to go to church. I needed that more than I knew. I didn’t realize how much I missed the interaction with others until I was there. I interact with people daily through social media and texting, but it just isn’t the same as being able to see smiles, receive hugs and just be loved on for simply being you. By the time, my husband and I arrived at the church with our grandson in tow, we were both emotional. My emotions were creeping near the surface, ready to spill out in the form of tears. My husband was frustrated because our grandson is a runner and any chance he gets, he bolts. Even though he had his safety harness on, and my husband was holding onto the strap, he wasn’t ready to go on a run with him.

And Tyson has learned that if we are trying to pick him up from the ground, and we want him to stand, all he has to do is bend his knees when we are lifting him and he becomes heavier to maneuver.  He is big for his age. He’s four, but weighs 50 pounds and is over three and a half feet tall. Carrying him for any length of time is strenuous to us “old” folks. Wrestling him into his car seat so we can go anywhere is an everyday battle. Once in the seat, he does ok, but getting him in the seat is a battle, every single time. And he has to be in a five-point harness because otherwise he would be climbing all over the vehicle and exploring.  Safety and danger are words he does not understand. He always wants to sit in a regular seat with just a seatbelt but we know that won’t happen until he is much older.

Walking into the church lobby, as we were greeted, the tears started welling up, and I just didn’t have the strength to hold them back or hide behind a pasted-on smile and pretend everything was good. I was tired. Tired of my own pains, tired of always struggling with Tyson when we need to leave the house. Tired of always being the positive one. We all have our breaking point. Yesterday was mine.  I know the devil will do anything he can to try and break me. For the past three weeks, I have opted not to leave the house on Sunday. I’ve made excuses, stayed home, watched our church’s live stream of the sermon and remain isolated because that was so much simpler than struggling with him to go anywhere. In doing that, though, I lost out on connecting with other people and being surrounded by people that love us through all our struggles; people that are compassionate and caring and offer to help in any way they can.

Sailing Life

I think for most of us that live with autistic individuals it’s not that we don’t welcome the offers of help or hope that someone will be willing to help, it’s that we don’t know what kind of help to ask for. Our home is “proofed” for him. We have specialized gates, taller than him to keep him safe and confined to an area of the home where there isn’t danger. We have learned not to have “pretty” things that he can break. We know if he is outside, he must always be (1) holding your hand tightly (2) have his safety harness on (3) be secured in his specialty stroller with a vest and five-point harness or (4) be in a fenced-in area where no escape is possible. We know he has food aversions and sensitivities. We must always have his emergency seizure medications at the ready and available. And the list goes on. Going anywhere, we must still take a change of clothes bag and appropriate necessities, because he isn’t potty trained yet. And if someone opts to take him for a few hours, what if he hurts himself, has a seizure, breaks something, gets sick. Yes, he is verbal now. Can he communicate everything he needs to? No.

The one thing I can offer to those willing to ask: please don’t stop asking. For me, it’s hard to ask for help for anything for myself, Tyson or our family. But I am learning to accept it. Accepting prayers from others is easy. I love to pray for others too. Accepting offers of helping with Tyson is getting easier, but I know how challenging his behaviors can be and I know that we never know from one moment to the next what he understands and what he doesn’t, but we do know he is very smart and intelligent in many ways. And letting go and accepting help may not be in my nature, but being part of a community of people that love us regardless of our challenges does truly make all the difference in the world.

May you know how much Jesus Loves You~right now~right at this moment and always.

Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings until next time~Carlene

 

 

Living with an Invisible Illness

Psalm 28:7 New International Version (NIV)
7 The Lord is my strength and my shield;
my heart trusts in him, and he helps me.
My heart leaps for joy,
and with my song I praise him.

 

I am so thankful Jesus is with me daily. His Holy Spirit resides within me. He keeps me focused when the pain is too much. When the bed seems like the best place to spend my days, he reminds me that whilst I can spend an unlimited amount of time with Him lying in my bed, it’s more difficult to share His love for others from that position.

A little over a year ago, I was in a different place, physically. I was feeling pretty good, my fibromyalgia was held at bay with amazing supplements I was using to heal my body from the inside out.  I truly had forgotten, although I can’t imagine how I could ever forget, the all-encompassing pain that runs through your body when you live with Fibromyalgia. I was walking and moving a lot faster than a snail’s crawl which is how I feel now. It was my hope back then when the pain wasn’t as noticeable, fatigue was held at bay and I felt like a normal person, that I would never endure this painful condition again. I wasn’t afraid to go places and try new things for fear of a flare-up and intense pain that might last for days and weeks.

fibro3

I’ve thought long and hard about posting any of this because I truly believed I didn’t have to deal with it anymore. It was a thing of the past. Unfortunately, I know in my mind, as well as my body, that if I am not consistent in using the supplements, eventually my body would go back to what it was and the supplements alone were not enough for the change to take place. I was eating healthier and getting some exercise. As much as I knew this was inevitable, I had hoped and prayed the muscle aches, the pain, the fatigue/insomnia would not come back. Instead of having the sheer exhausted feeling of fatigue, now I am plagued with insomnia. It’s crazy!

But, I push through. I will not quit or give up. That’s not me. I’m not wired that way. Thank you, Lord, that I am not. Thank you Lord Jesus for giving me the strength and determination I need to keep putting one foot in front of the other, no matter how difficult or slow I may be. And watching people much older than me zoom by me in the grocery store or in a parking lot, makes me realize how slow I am moving. However, I AM moving. So very thankful that is the case and I am not in need of a wheelchair.

And because I guess my hand/wrist felt left out of the pain equation, the carpal tunnel is back with a vengeance. I’m back to using a night splint and sometime’s using the night splint during the daytime so I can function again. I never did learn how to use my non-dominant hand to write with. I wonder if that is even possible at my age? OR if I am too set in my ways to take the time to learn?

My internal temperature gauge is stuck in cold mode. I am rarely warm, no matter how many layers of clothing I wear. This totally sucks. I tried to think of a better way to say it that didn’t sound rude or unbecoming, but it sucks. Plain and simple. That’s why I always try to get my hubby to drive everywhere; his vehicle has heated seats.

I guess the hardest part of living with Fibromyalgia is you never know from one day to the next how you are going to feel. Knock wood, the osteoarthritis in my knees and hips are manageable at this time. The degenerative disc disease in my lumbar spine is worse. And the spill I had a few weeks ago, trying not to fall mind you, hasn’t helped.

Because of respiratory problems I live with, I cannot take pain medications to help with my pain. This causes problems with my breathing. Slows it down too much. So I rely on Jesus to carry me through the pain. I spend a lot of time sitting, with my legs propped up as much as possible and I long for the times when I was able to be an active participant in the lives of my family and grandchildren. I have four amazing grandchildren, one lives with us and I am blessed to see him grow and bloom before my eyes. The other three are several years older, involved in extracurricular activities and I haven’t been able to attend any of their outdoor events this year.  It makes me very sad. I love them so much and as much as I know they try to understand, I feel as if I am cheating them somehow and I HATE this part of this disorder/disease.

The other three have known for years that I can’t run and play with them the way their grandfather does. But I have always been able to go before. Now the cool weather is just too much for my body to handle. But I am so very proud of them for everything they do and someday when they are much older, I hope they will know without a doubt that if I could I would have been to every single thing they were involved in.

I push myself many days to get up and get dressed. Put on my “happy” face and “fake” it. I know living with me when I am in pain, is not a walk in the park. I become irritable and grumpy and short with others. I do my best not to let this side of me come out from behind closed doors, but it is so difficult because some days just getting dressed wears me out. The thought of running to the store to grab a few things is exhausting just thinking about it. It’s great if the store you go to has electric carts for customer use, that actually work and will last for the entire time you are in the store, but many are used so much they never have a chance to fully charge and the only thing worse than not having them available is using them to shop and the battery dying in the middle of your  shopping trip and then it’s like being stranded on an island in the middle of nowhere. Now you have a full basket of goods, but no cart in sight to transfer them to.

The single most agonizing part of the widespread pain returning is the muscle spasms that come, out of nowhere. I turned my head earlier to look at something, not quickly, but as I turned my head, a sharp muscle pain and I just had to wait for it to pass. And I get these spasms throughout the day, everywhere. Many you cannot just walk out. Most of the time you just have to wait until your muscles relax. It may be myofascial pain. I’ve been reading about it. This is something I will have to ask my physician the next time I see her.

I have many friends that live with Fibromyalgia and as much as we can be there to support one another, all of us live with it and have varying symptoms to varying degrees. Many of my fibro friends, can’t stand the hot weather or warm temperatures, drains them and all their energy. For me, I am completely the opposite. I love the heat. The hotter the better. Cold weather sucks the life right out of me. There isn’t a coat or blanket warm enough to keep me comfortable. And of course, I live in a state that is known for unpredictable weather.  One day it’s 80, the next it’s 40. It’s no wonder I feel so cold, right?

2 Corinthians 1:3-5   New International Version (NIV)

3 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. 5 For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ.

I am thankful that I have Fibromyalgia because then I know how to extend comfort to those who deal with it too. I know that God allows us to go through many things in life as a way to be a testimony to others that put their hope in Him. I can still be a light to others by encouraging them, no matter the type of physical pain they experience because our earthly bodies are temporary. This is not our home. We are citizens of Heaven. But I also know that He does not expect us to suffer alone in silence. We are all made for relationship. Relationship with friends and family. All of us have a need to be part of a community, that is loving and supportive. And while all of us can be less than loving and supportive at times in our lives, that is where grace comes in. God gives us grace because He loves us, not because of anything we can do to deserve it. We all fall short in that area. All of us.

Be kind to others. Love them. No one, except for Jesus, knows the internal struggles and battles each and every one of us faces daily. And for each of us, no matter the battles, they can be debilitating if we forget to lean on The One who gives us life. The most important relationship you will ever have in this life is the one you have with Jesus. In my opinion.

Psalm 100:5 New International Version (NIV)
5 For the Lord is good and his love endures forever;
his faithfulness continues through all generations.

May you know how much Jesus Loves You~right now~here in this moment and always! Jesus can turn any mess into a message and any test into a testimony! #HopeAlwaysHaveFaith

Blessings friends~Carlene

 

 

How Did I Get Here?

The past few weeks, I have run the gamut of emotions. Some happy, some sad, mad and angry and some so mixed up I am not sure how to process them, so I sit and I read and I pray. I turn to the Father and seek His guidance. I converse with Godly counsel and friends that love the Lord as much as I do and ask for prayers and wisdom. Doing my best to discern what is from Jesus and what isn’t.

I grew up knowing Jesus. There was never a time in my life I didn’t know about Him or forgiveness, grace, mercy, and unconditional love. And even in my darkest moments, when all hope seemed lost, He was there. He has always been right beside me, His Holy Spirit dwells within me. And just so I don’t sound all high and mighty here, and keeping it real, sometimes knowing all that, I have still tried to figure stuff out on my own, and believe words spoken over me or people’s opinions that belittle me and not stand up for what I know to be TRUTH.  It’s easy to allow it to happen if you don’t remember WHOSE you are.

Life isn’t easy and Jesus never promised that it would be. But He did promise that He would always be with us. He would be our strength because His strength comes through in our times of weakness.

Philippians 4:13 New Living Translation (NLT)
13 For I can do everything through Christ,[a] who gives me strength.

In the past several months, I have had many moments where I just want to chuck in the towel and give up. And I hate that feeling.  Sleeping was easy. No problems for me to deal with, no solutions to come up with, no hurt feelings to soothe, just sleep. And that would be a pretty good plan if life didn’t keep moving on and every task for the day was done, but in my world, the real world, sleeping all day is not a healthy thing to do unless I’ve had a flare up with my fibromyalgia, or I am sick or I am so exhausted I just can’t take one more step. Meals need to be made, laundry needs to be done, errands need to be taken care of, family needs to be loved and appointments need to be kept, therapies to go to and the list goes on.

I am a positive person. No matter how bleak things appear or seem, I can always find a bright spot, a sliver of hope. Nothing can be as bad as it seems, and even when it is really as bad as it seems, I choose to trust in Jesus and God and know on faith that God will take the bad, tragic and sorrowful times of our lives and use them for good.  I’ve experienced it. And that’s a promise in His Word (Romans 8:28)

I have difficulty encouraging myself. Many times I just want to let someone else carry the load. I want a break. I need a break. I never imagined at 53, I would be where I am right now and yes, it could be a lot worse than what it is. When we are struggling in any given moment, it seems like it could be the worst low we have ever encountered. And crawling out of the deep dark hole isn’t as easy as it seems. In moments like this, I usually have to shift my perspective, and at times, I don’t want to. I’m tired. Emotionally, more than physically.

I hadn’t planned on being retired and spending most of my waking moments with only the people I live with. I love them, they are my family, but I am a people person. I love having conversations on a variety of topics, I love being challenged to do things I didn’t think possible.

This video from Mercy Me helps me get through some of my darkest moments. It reminds me where my Hope lies.

I didn’t realize that the extreme pain in my lower back would stop me from being able to live the life I so desperately want. And I am not talking about anything exciting or adventurous either. Simply to be able to go to the store, or take a walk more than 10 feet and have to stop and sit. It’s horrible having this continual pain. I hate thinking about it and living with it. I want to lose the burdensome weight I carry on my frame, but to do that I have to be able to exercise, along with eating right,  and while chair exercises are a start, they don’t do much for losing weight. Surgery to repair the damage from the degenerative disc disease in my lumbar spine area is not option until such time as I lose a significant amount of weight and my circulatory problems improve. And there have been many loving suggestions from family and friends. I did consider bariatric weight loss surgery, but that would require at least 5 to 6 weeks of recovery with rest and I can’t even get a few days of uninterrupted rest let alone 5 to 6 weeks.

When I injured my knee and tore the meniscus I was told surgery was not an option because of my health and I felt in such a conundrum because if it was too high risk for surgery to repair my knee, why was it okay to have surgery for serious weight loss? It was safe for one but not the other??

Water exercise is great if you have a pool. But if you have to go to a pool, and pay for use, that can be quite costly living on a fixed income that is stretched as far as it will go. Feed your family, pay your bills or go exercise in a pool of water. It usually isn’t a hard choice to make. We have to have electricity, hot water, and food. We have to have a roof over our heads and we have to be able to take care of a little guy that can’t care for himself.

It’s the days when the pain is hard and other’s aren’t feeling well either, those are the most difficult to get through. But, I get through them. So thankful for Jesus. HE is the reason I have made it this far. I am still walking, slower than a snail, but I am walking. I think of the many things I have to be grateful for. I put on some worship and praise tunes, I make a list of who and what I am grateful for and yes, sometimes I sleep.  And ever so slowly, I find my way back to hope, encouragement, and realize everything I go through is just part of my journey.  What I deal with personally and what I go through, helps me to see life from different perspectives. I have been on both sides of the pain.  The times when my pain was manageable and the times when it nearly knocks me out of the game. I work through the depression, talking it out with loved ones, trusted confidants and Jesus.

Currently, I do not take medications for depression. I did at one time when the pain was so great every single day that I needed it. There may come a time when I will have to again, and if that time comes, I will do what I need to for me.

I think of the times Jesus was depressed. I think of the days before His crucifixion when He knew the pain He would endure and how sad and sorrowful he must have been. I think of Him being nailed to a cross and being suspended on that cross and I realize that no amount of pain I go through will ever compare to His. That image in my mind helps me. It helps me remember that my time on earth is temporary. This body I live in is temporary. One day I will have no more pain. I will cry no more tears of sadness, only tears of joy. Until that time comes though, I will minister to others the only way I know how and I will listen, comfort, share my thoughts and opinions and love the life I have. Part of growing in the Lord and living by faith is trusting in what we can’t see and believe in what Jesus has promised.

May you know how much Jesus Loves You~right now in this moment~wherever you are. Jesus can turn any mess into a message of hope! #HopeAlwaysHaveFaith

Blessings my friends~Carlene

 

 

Keeping it Real

For the Lord, your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”

Zephaniah 3:17 NLT

 

 

I am encouraged by reading the above passage of Scripture.  Yes, Jesus is living among us. His Holy Spirit lives within me. He is Mighty and Powerful. He delights in me! He calms my fears with a love like no other and He rejoices over me with joyful songs.  This verse reminds me that no matter how things may appear to me, my Heavenly Father rejoices over me and my life!

I firmly believe that everything that we go through in life is for a greater purpose than we can see or imagine. I know that God is in control and when you have a personality like mine that wants to fix all the problems around and ease burdens, it’s easy to think you’re on your own.

HAHF

I love the Lord with an everlasting love. One that cannot be diminished by my circumstances. I know there is nothing I will ever face that he can’t possibly understand or hasn’t overcome.

I’ve been feeling out of sorts of late and I cannot pinpoint why.  I can think of many reasons but not specifically pinpoint it. Two years ago, when an invisible chronic illness forced me to reevaluate my life and retire early at the age of 51, I wasn’t sure what would happen or how our family would make it without my income, but I knew God would provide a way.  It was scary.  I had worked since I was 16 and being someone who typically fixes problems, I really had no idea how to fix this. I knew though, that if I didn’t start taking care of myself, I wouldn’t be good for anyone else.

I have never been the type of person that puts my needs above others. I am not wired that way, so trusting God and the Peace He imparted to me, made the decision, although scary, so much easier to make.

Three months after taking early retirement, my daughter and I sat inside a small exam room of our local Children’s hospital Developmental Pediatrics clinic finding out her son, our youngest grandchild, had Autism Spectrum Disorder and that opened up a whole new set of scary challenges. He was nonverbal. That was in 2016. He has found his voice but doesn’t answer many questions yet, unless they are specific questions he can answer.

No matter how much pain I was in, every day I would research and work with him to help him understand, teach him simple signs so he could make his requests known and try to bridge the gap between his mind and the world. His favorite phrase, now is “I love you too.”  He climbs up on my lap, wraps his arms around my neck and repeats that phrase over and over. Melts my heart.

Living within our means was a challenge when I was working full-time and bringing home a paycheck every other week. Living on a fixed income and having enough to last from month to month is nothing less than a miracle from God. And there are some months, there isn’t enough, but God always provides for our needs. We have found hope through food pantry programs and installment plans on bills to carry us through and the love of family and friends.

Somewhere along the way, dreams changed, priorities shifted and I feel like a failure. I know I should not feel this way, but deep down, if we are keeping it real, I do. I can’t be on my feet for very long periods, or my legs go numb all the way to my feet, the searing back pain makes me want to sit down and cry, but I hold the tears back.  The widespread pain I used to experience throughout my body is held at bay by all natural supplements I use and I thank God every day that I found those.  However, they don’t help with the searing pain in my back. It’s the type of pain you learn to live with and you adapt. Pain changes a person, even if you try your best not to let it.

I had hopes of working til actual retirement age and retiring to a warmer state with no snow and no cold weather.  But I don’t see that in my sights anymore. Now I see therapies, medical appointments and helping our grandson thrive in his life. And I truly am not trying to sound like I am complaining, because I love this little guy and would do anything within my power to help him succeed.

I don’t like clutter anymore. At one time, it didn’t bother me as much as it does now. I would guess the fact that I see it 24 hours a day 7 days a week probably has a lot to do with that. When I was working, and then coming home to a mess, wasn’t as important as sitting down and relaxing before cooking dinner, bathtime, and bedtime. Now everywhere I turn, there is a mess. Yes, having a toddler in the home is a tiny part of the problem, but the biggest reason, is I have become too complacent in keeping the house in order. For the past two years, I have been saying the clutter has to go, and yet as I view the room around me, it seems not only has it not gone anywhere, but it has increased! My answer is simple, rent a dumpster, and start tossing. It sounds like an amazing idea until you figure the costs and realize the budget you live on will never work with the idea.

A year ago, my physician encouraged me to consider having a bariatric surgical procedure to help me feel better. And I did consider it but knew there was no way that I would be able to have the allotted time for recovering from such a procedure available to me, so I gave up on those plans. I have been considered morbidly obese for years and no amount of changing the way I eat, ever seemed to help. Exercising is so difficult because of the searing back pain that I have become resigned to being the size I am. And that is scary because I know that if I don’t lose some weight and get down to a healthier weight, I am not only putting my health at risk, I am shortening my lifespan.

This depression in me has rendered me “stuck”.  I want to do more with my life. I want to be a light to others. I want to be healthy. I want to be around for at least another 40 years or so, God willing, but I know that if I don’t find a way to get moving, more than I am now, I may end up more disabled than I already am.

Since 2005, I have struggled with a thyroid problem. I was diagnosed with Graves disease that year, because not only did I have a thyroid disorder, but I also had an autoimmune disorder. I have been without a thyroid gland since 2006 when it was eradicated by radioactive iodine treatments and have had to remain on medications that replicate the production of thyroid hormones that control the organs in my body.  I have been struggling with keeping my TSH levels in the normal range and finally some good news that the dose they have me on is finally showing good results.

Living with obstructive sleep apnea requires me to wear a CPAP (continuous positive airway pressure) mask every night and the machine forces air into my throat and keeps my airway open. About a year ago, I found out that even though my CPAP equipment was working properly, my cells and organs were not getting enough oxygen to live well. So, supplemental nighttime oxygen became part of my routine as well. When someone lives with OBSA, if they sleep for 12 hours or 2 without equipment to help keep their airway open, they will always feel fatigued and may suffer from headaches, leg cramps, falling asleep the moment they stop moving or talking. I never realized how important oxygen saturation in our bodies was until I was lacking it. I felt like a zombie and couldn’t comprehend why I was feeling so horrible, until I was informed, after testing, that even though my airway was remaining open during sleep with the CPAP, my oxygen saturation levels were dangerously low nearing 60%, not the recommended 90% or higher. For me, sleeping without my CPAP/Oxygen is not optional. The only way I can sleep without it is in an upright position and then I am still lacking the proper oxygen my body needs.

As my husband, grandson and I prepare to take a vacation, that has meant putting aside money we really don’t have, so we can get away and relax, I have come to realize this may be what I  need to get back into the right frame of mind. A change of scenery and climate, along with being able to visit a loved one that I miss deeply, might just boost my energy levels again. I am counting down the weeks until this becomes a reality.

Every morning as I sit with God and pray, I see the clutter in my home and I don’t want my heart to remain in a cluttered state. I need to embrace the purpose in my days. Seeing the same four walls and facing the same daily challenges in raising a special needs child can make anyone feel isolated and alone. I know it has for me. I have always been a “people person”. I love being around others and engaging in conversations and somehow, I have got to find a way to do that again. As far as the clutter, I know that many experts suggest starting off small, working on a small area at a time and not looking at the big picture. It’s just so hard when you see the entire picture daily. There is no shutting it off.

I know our lives are always a work in progress. Growth can’t come if we are not willing to change or try things in different ways. I know that for every failure I have ever experienced in my life, there has been a lesson learned and life always looks better when you get through the testing than when you are going through it.

And I know, that the feelings of failure and sadness that have been holding my heart hostage, they too shall pass. I know this because I am loved. I am worthy. I am enough.

Thank you for listening to the ramblings of someone who knows that I have much to be thankful and grateful for and that no amount of “feeling sorry for myself” will help. I guess I need to see the words and read them to realize that. And I owe it to all of my readers. Without readers, there would be no blog and no reason to realize that God will allow many events in our lives to take place as He works on molding and shaping us into the person He created us to be.

May you know how much Jesus Loves You~right now, wherever you are and He is always available to you! #HopeAlwaysHaveFaith

Blessings~Carlene