Do you see that brown spot on my cheek? That’s what my OBGYN called a birthmark. No, I wasn’t born with it. My children were. 😉
When I was pregnant with my first (my dd), I developed this mark. It was on my right cheek. The doctor said it would go away after I gave birth. It didn’t.
When I was pregnant again, I developed a similar mark on my left cheek. It didn’t get as big because I wasn’t pregnant very long. I miscarried.
When I was pregnant with my son, the mark on my right side began getting bigger. Unfortunately, I had similar problems with this pregnancy and was put on bed rest.
One day when I was washing my face, I looked in the mirror and I felt as if God was speaking to me. He said, this child would be ok. The mark was on the right side. It wasn’t on the right side (meaning not left). It was on the RIGHT side (meaning not wrong!)
I felt a peace and my son was born perfectly healthy though his birth story is chock full of God’s miracles! That is a whole other story I’ll share another time.
Yesterday, I was looking at myself in the mirror (something I don’t mind doing now that I’ve lost 33 lbs!) and I noticed that the mark on my right cheek is almost gone. After 30 years, you almost can’t see it anymore. However, that birth mark on my left side is still prominent. As I wondered why God would allow the mark on my right side (reminding me of my two beautiful children) to fade while leaving the left visible, it hit me!
The Lord wants to remind me of what He did for me and for my children. There’s a child I’ll see one day in heaven even though I wasn’t able to here on earth.
Through adversity, God gives us gentle reminders of His love. We can find joy in that at some point – even if not at that moment.
If you’re struggling, remember that God wants to comfort you. You’ll find peace if you look to Him.
When we’re going through something difficult, we often don’t see much progress. We don’t feel God near us or we don’t see an answer to prayer. Most of you, like me, have lived with chronic issues for a lifetime. My fatigue started when I was a child. I could never understand how other teens and pre teens had the energy to run around and even do chores.
As we go through difficulty, we get used to dealing with it as best we can. That’s good, but it’s just as often, bad. What I mean is, we get so used to being fatigued, to not being able to take a shower without having to rest, that we don’t even consider that anything could change and we may not even notice when it does!
Case in point, my weight loss journey. For those who are just joining me, here’s the background to get you up to speed:
I’ve been packing on the pounds for over twenty years. After delivering my son at the ripe old mom age of 37, I was thrust into peri menopause. It was both frustrating and frustrating.
What I mean is, it was frustrating because I was slowly adding poundage. I was a different kind of frustrated because that’s when the Hellish Hot Flashes started. I was all kinds of frustrated that my doctors (plural) would NOT believe I was actually IN peri menopause! And I was frustrated because no matter what I did, what I didn’t eat, how hard I tried to exercise, and how hard I tried, I just kept gaining!
After the hysterectomy four years ago, my weight gain took on Olympic proportions! I was now a whopping 152 pounds! That might not sound like a lot to YOU, but if you consider my stature or lack there of, is only 5′ nuthin’, it was quite astounding.
It took me 21 years to add the weight and I really had no idea how bad I looked til one day I got a glimpse of myself in the mirror. How could I be gaining all those years so much weight and having it make THAT much of a difference…and I not NOTICE??? It happened while I wasn’t really looking. A little at a time. Then, one day, I saw it and BAM!
So, I found my health coach and Mary and I got to work. I began losing weight but just a wee bit at a time so…I didn’t notice. My husband kept telling me that I was looking great, but when I looked in the mirror I still saw a fat me. Until…one day…
It was interesting to me how it went both ways, but that’s not the end of the story. While I was trying to lose the last five pounds of my menopause weight, I was pretty frustrated that my thighs and upper arms still had wagging rights.
However, as I was contemplating the pain level of squats and modified pushups, something amazing happened! My thighs were discovered social distancing! Yes! While I wasn’t looking, my thighs actually responded to…
I’ve been exercise intolerant for about 58 years, the sum total of my life here on Earth ever since the space stork dropped me off here. How could it be that I was FINALLY able to do some that actually worked? Answer? I dunno. I think it was just the combination of the incredible job Mary did with my weight loss that allowed me to have enough energy to actually DO any exercise and my husband’s suggestion that I try squats and modified pushups.
I’m both proud and ecstatic to announce that my thighs (and even my calves) are thinner than they have been since I can remember! I’m still experiencing more energy and fewer/less severe flares since my 31 pound weight loss. Meanwhile, I’m working on my upper arms and turkey waggle neck. Film at 11!
What I’d like you to take away is how many times we are actually MAKING progress, but not actually SEEING it. God works that way sometimes. Sometimes we are working hard at what we feel God has asked us to do, but we are not seeing the fruits of our labor. Sometimes we are doing something that WILL have a positive effect on our health, but we don’t see any progress.
Sometimes, we just have to keep looking before we can see it.
So, I had a bit of a reorganization of my ENTIRE life this past month or so! It’s in almost every area of my life so I thought I’d share a bit of that with you and tell you what that means for my Life Beyond Surviving blog moving forward.
For the last seven months, I’ve been on a health journey that has been truly transformational. I’ve lost 30 pounds and countless inches due to my health coach, Mary. Because of that, I’ve lowered my blood pressure and increased my sleeping, and my energy. It has decreased the number of Fibro flares I’ve had and also the duration of those flares. I still have a minimal amount of energy but I’m no longer taking naps in the afternoons or getting fatigued after a shower. At least once a week, I posses the energy to blow try my hair…all of it. LOL
Unfortunately, my Essential Tremors have ramped up quite a bit. Using utensils has been especially difficult, but my daughter and son in law bought me some weighted utensils that help quite a bit. I’ve had to add a special gloves to help me in the kitchen as well. These handy little purple wonders help me avoid burning and cutting (or in this case shredding) my fingers.
During this last month or two, I’ve felt more and more that I am lead to pick up my Art of Eloquence role and move it forward. As I was noticing that the rhetoric on social media has become so angry, I began to feel called back to my communication roots. I founded a new Facebook group where I have begun hosting live workshops that speak to those who have a mission, ministry, or business but struggle with shyness or social anxiety that doesn’t allow them to move forward as they feel called.
Lastly, it has become more and more difficult to type so, I have decided that I need to take a step back from this blog for now. I will continue to update it about once a month, but I will be putting more of my time and typing energy into my business and to what I feel called to do to help God’s children find their voice.
I pray that God continue to use me and I pray you find your purpose despite the difficulties that chronic illness brings.
Last week, I talked about how we, who have endured difficult health issues, have been blessed to be born without a comfort zone. I shared how I feel it has strengthened me both mentally and spiritually. This week, I’d like to share why that’s especially important these days and especially during Covid Times.
Have you noticed how even though society has so many “modern conveniences,” people complain that life isn’t easy? People seem to be offended by everything. They can’t seem to cope well with things the older generations thought were just part of life. I believe most marriages end in divorce because the younger generations no longer view relationships as something requiring work. They lost that loving feeling and so they simply move on.
Success in anything takes work whether it’s a business, a relationship, or an education. Unfortunately, fewer people these days will put forth the energy required to do so.
When I first began writing this blog post, I was doing it from my iPad because my laptop hard drive was failing and I was backing up all my work. I was typing with a stylus because my fingers shake due to Essential Tremors if I use my fingers directly. I was working on changes to my site on paper even though I had a massive headache. Why? You just do what you can with what you have.
It’s how you look at things. If you look for the bad, you’ll see it. If you look for the good, you’ll see that too! You’re not entitled to an easy life. A lot of American young people think so but it’s not true. The founding fathers knew this. We with chronic illness know this all too well.
If I go back a generation in my family, I see a much stronger work ethic than I see today. My great grandparents and my grandfather came to this country from what was then Russian to start over with nothing. My grandfather didn’t speak the language, but he worked hard and eventually was Vice President of a large Union in N.Y. He provided very nicely for my father and his brother.
My husband and his family came from Mexico with nothing not speaking the language. They worked hard. Made a life. They came for the American dream, but that dream was an opportunity, not an entitlement.
A job is hard work. A business is hard work. Marriage is hard work. Life is hard work. I think most people many years ago used to understand this. I think the younger generation can learn a lot from our ancestors. I also think they can learn a lot from those of us with chronic illness who don’t have a comfort zone. But I also think we should stop and think once in a while to learn from ourselves.
No, life with chronic illness isn’t easy. But life never promised it would be. And sometimes, if we focus on the strength it takes to get through a day with chronic illness, we can be proud of what we accomplished!
So far this month, I’ve talked about not trying to swim upstream, but allowing God to guide you and about how to look for the good in your struggles for a more positive attitude. This week in part three, I’d like to tell you something that will probably be the most uplifting thing you can take in during a time of crisis.
You are more than your chronic illness. I originally wrote this as a way of expressing my feelings about race. So many people talk about race as if that’s all someone is. But each of us is so much more than the color of our skin…or the chronic illness that affects our lives. Your life is the sum total of what God gave you, the experiences you have, and what YOU CHOOSE to do with it.
Two children of the same parents. One grows up to feel his upbringing was difficult and his parents weren’t this or that and that’s why he has trouble in life. The other grows up to believe that since he was poor and his parents didn’t do xyz for him, he learned to do for himself. Two children, same situation, two different lives.
It isn’t the difficulties we have in life that define us. It’s what we DO with them that counts. It’s what we make of them that matters. It’s what we learn from them that inspires…both us and those around us.
I wrote this poem a long time ago. I’ve shared it over the years many times both here and on social media. But I want you to really read the words this time. Take to heart what it says to your spirit.
You ARE more! If you stop swimming upstream and allow God to guide you, you’ll see that. He always knew you’d have these difficulties and He factored that in to the mission He gave you. Just as He did me. Your mission may be different than mine, but you have one. I pray the Lord show you what it is and how you can fulfill it despite or maybe because of your chronic illness.
Next week, I’ll be back to inspire you to inspire others!
Last week, I talked abouthow much more difficult it is swimming upstream rather than just letting the Lord lead you. This week I’d like to give you some perspective in re-framing how you look at things.
Have you ever played that game where you look for red cars and you suddenly noticed red cars all over the place? Or have you ever bought a new car and then noticed them all over the road? God created us with certain filters so that our senses don’t get overwhelmed. We filter out so much that we never notice because, if we did notice everything around us, we’d never be able to concentrate on anything. That works FOR us in this case, but it does work AGAINST us in others.
If you are having a bad day, or a bad year, you are more apt to get negative and see a negative spin on everything–even when there isn’t one. I once posted an adorable picture of a puppy. Most people said how cute it was. One person said it was horrible of me to post it because her cousin, twice removed, was once bitten by a dog in Cleveland.
There’s always a tendency to be a Negative Nelly when we are struggling. It’s normal to do that for a short time. What’s not normal (or helpful) is to live in Negative Nellyland. If you see that you didn’t naturally leave Nellyland, here’s what you can do to guide yourself out. I know because I’ve been on this road myself.
It sounds too simple, but it actually works if you work at it. Look for the good and you’ll find more of it. It’s not hard, it just takes practice. Look for good in all bad experiences: what you can learn from it, how much God has helped you, how blessed you are… and you will find it more and more. Then watch our Lord work and see how much more joy you have!
I remember some stories from Sept 11th about how something went wrong and they couldn’t get to work that day…in the twin towers! Or they were late and missed being there when the plane hit. Some of those stories were frustrating until you saw the bigger picture. The one God sees.
Having a baby is one of the most painful things. Know how we get through it? We know we get our CHILD at the end. The pain is worth it. No pain is worth it if we don’t see the value either in it or that comes from it.
Look back to some of worst things that happened in your life. What can you honestly say you learned from that? What can you say you gained because of it? Just as I have gained my life due to my husband losing his job for racist reasons, you can probably find SOMEthing you gained from the difficulties you’ve had or are having. One of them is probably experience that can help someone else!
Check back next week for a little pep talk I’m sure you’ll benefit from!
I pray you’ve had some blessings from reading my summer tips for chronic illness series this month. I have one more to share with you and it’s just some ideas I put together for summer activities for those of us with chronic illness.
The fatigue and pain we have in common are what may keep us from doing things. However, while they may limit the things we choose to do, they don’t have to completely keep us in the house by ourselves (for most of us anyway).
Finding things that are more comfortable to do during the summer may include things that are indoors, require little to no walking, and little to no travel. Here are some ideas I had. I’d love for you to share yours!
One of the activities I discovered during the excruciatingly hot summers in ARIDzona were the summer movie programs most movie theaters hold each year. They show older movies, mostly for children that they rerun in summer months. While you may not want to attend all of the days, you can pick and choose. Many of these movies are kid-friendly but not necessarily cartoons. I’ve enjoyed seeing them again and some for the very first time!
I don’t know if the theaters are open near you, but you could watch a Netflix movie with family or neighbors or you could view it while on a zoom call or phone with someone. Here’s one that came from my son. He loves movies, but during Covid, we couldn’t go to a movie theater so he made a movie marathon at home for his birthday. Have popcorn or your favorite slushies and invite friends or family over.
If you have a pool or live in a community with a pool, especially if it’s an indoor pool, that’s a great idea provided you’re not out too long in the sun or heat. If there’s shade, that’s a great place to sit and watch the kiddies or grandkiddies play and be with loved ones. (Covid not withstanding, of course)
Another great idea for kids activities is in the backyard where you can supervise. They can be playing in the backyard with you in the shade. Childhood games you remember from your youth can be introduced or you can tell stories of your life and ask your kids or grandkids about their favorite things. I used to talk Gameboy with my son.
Board games are another great activity to do with children, but there are some great games now for adults that can be played with visiting family indoors to keep out of the sun.
You can make up your own games for small children. Give them a letter and have them go around the house and find things that begin with that letter. If you have more than one kid, give each one a different letter.
Zoom and other online companies offer free services where you can actually see a friend or family member as you talk to them. I’ve had a weekly Zoom call with my mom, sister, aunt , daughter, and niece. Sort of a girls day in. Whoever can make it each week. It’s been a lot of fun getting to see family I’ve not been able to because we live so far. We’re actually all in five different states. Seeing their faces is sooooo much more fun than just hearing their voice on the phone–especially if you can do it as a group!
I know many of us have a hard time maintaining the energy needed to do day to day things. It seems an insurmountable task at times to think about travel. However, if you can, it’s often a great idea for lifting spirits.
I actually found a great article on the topic and just thought I’d leave that here for you to peruse. It emphasizes talking to your doctor and planning! Planning is a HUGE part of chronic illness life, but just know that as they saying goes…the best laid plans of mice and folks with chronic illness… You may need to make changes as you go.
My only advice to you is to share how I felt when traveling by plane. Plane travel is very difficult with chronic illness. All that waiting in line while standing is very hard. Lugging around luggage is much easier if yours has wheels. Also bring snacks because the food at airports is expensive and you’ll need to wait in another long line to get it.
Long car rides can be difficult too as you’ll be sitting in a cramped environment for a long time and that can wreak havoc on your muscles. I’d suggest stopping often and stretching your legs every few hours if you can. Even an hour car ride for me is a bit hard at times so do what you feel you can.
I can’t really add much more to it other than to say that every individual with chronic illness will be different and may have different needs and limitations at different times.
What are your best travel tips?
Check back next week when I finish the series with summer activity ideas for those of us with chronic illness!
People with chronic illness, particularly fibro are often sensitive to temperature and temperature changes. Heat can aggravate pain and fatigue and cause other heat-related illnesses like heat stroke and heat exhaustion as we talked about last week. This week, I’d like to share some tips for beating the heat of the summer for chronic illness. Here’s mine. Feel free to comment and share yours!
1.Stay hydrated and avoid alcohol and caffeine Caffeine and alcohol can get you dehydrated more quickly which is a bigger problem when you add heat to the mix. Stay hydrated by carrying a water bottle or thermos with you in the car and even from room to room in your home. The AC can cool things off but it is also drying the air so hydration is key.
2. Avoid direct sunlight for too long As I pointed out last week, heat issues kind of sneak up on you. Make sure to limit your time in direct sun or heat to avoid the heat illnesses or fatigue creeping up on you.
3. Eat smaller meals Eating smaller meals allows you to avoid getting hungry which can contribute to fatigue. It also allows you to eat more frequently. This keeps you from eating too much at one time which can bring on a food coma. 😀
4. Luke warm showers instead of hot showers Taking luke warm showers instead of using hot water helps keep you from those huge temperature swings. I’ve had to adjust to those. I love taking HOT showers. The kind that my husband says burns his skin! ROFL The heat can help my muscles but it also contributes to my fatigue after a shower.
5. Wear layers especially when going in and out of ac, lightweight light-colored clothing If you’re like me, you can go from freezing to burning up in two seconds flat. I always wear layers to help keep myself regulated. Sometimes I even get both at the same time. I call that FROT. Freezing Hot!
6. Keep medication cool. Some meds are sensitive to the heat and some make you sensitive to heat. (Lupus) It’s best to keep meds out of direct sunlight and away from humidity. Many people keep them in their bathrooms, but that room can get quite muggy from showers. I keep mine in the pantry in the kitchen.
7. Know your limits don’t do too much I’ve said this many times. I have no idea what my limits are and they change from day to day and week to week. But this is something many doctors and articles tell you so I’m including it here. Do the best you can with it. I’ve almost given up trying to figure my body out in this area. LOL
8. Know the signs of dehydration:
Loss of appetite
Dry skin (you no longer sweat)
Decreased urine volume or abnormally dark urine
Come on back next week when I’ll be talking about summer travel tips for chronic illness folks!
So, I was on Facebook this morning when someone posted one of these type sayings in the spirit of If You Give a Mouse a Cookie. It occurred to me that there’s a chronic illness version of that and here it is…
If you give a chronic illness person a bit of energy, she’s going to want to clean the house. When she begins to clean the house, she will remember that she’s probably better off using her energy to cook some meals ahead of time.
When she begins to cook, she will realize that it’s time she ate something. When she gets to the refrigerator, she will notice she needs to go food shopping.
When she gets back from the store, she’ll realize that she left the stove on and the pot is burned. When she goes to throw the pot into the sink to cool, she’ll have remembered she never ate lunch.
When she returns to the refrigerator, she will remember that she left the groceries in the car. When she finishes putting away the groceries, she’ll notice that the house is even messier than it was this morning.
When she thinks about cleaning the house, her body reminds her that she is out of energy.
And this is why she is found sitting on the floor near the couch in a house that looks like it was ransacked with the ice cream melting on the ground beef that is running down the kitchen counter.