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An ordinary day with chronic illness is filled with ups and downs.  This life is hard enough when you’re in your own home, surrounded by your family.  Your routines help with keeping a steady beat in the chaotic symptoms that accompany our lives.

When traveling, it seems so much harder to deal with the pain and fatigue.  Normally, our travels are never more than one week.  But, this trip is longer and I miss my own routine back home.  It’s harder to get the rest I need and solitude that helps me to recover from pain.

If you’re like most people with chronic illness, what you eat also affects how you feel.  Being away from your own pantry is tough for your stomach.  We try to stick to our usual diet, but it’s not always possible.  As we try hard to fit in and not cause drama in the kitchen, there is a balance that’s hard to maintain.

I’ve learned to travel with some of my most-needed foods.  We also make grocery trips to purchase things that make a big difference in my diet.  This can make the changes in foods much more bearable.

My CPAP and pain gel have kept me functioning much better on the road.  Sleeping late in the morning has also helped me tremendously.  The inconveniences of being away from home are forgotten when we have beautiful visits with loved ones.  I may feel worse, but I wouldn’t give up these times for anything.

Whatever makes it harder for you to travel, you can prepare for it ahead of time.  Before you pack, make a list of all the things that help you with pain and flares.  Include all your tools and helps so that you can focus on helping yourself through tough moments.  And, don’t forget those little things that help with Self-Care.  Your body will thank you.

@2018, copyright Lisa Ehrman

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Yesterday we spent 13 hours driving to see family.  I was amazed that my body functioned throughout the trip and I only experienced a few short back muscle-spasms.  Even though I forgot my sunglasses, I didn’t get a headache.

……Until….we arrived.  When we had been to our destination for a little while, the pain began with a vengeance.  I put on a brave face and smiled as I embraced my loved-ones.  But, when I got to the bedroom and shut the door I let it all out.  My face fell and I was suffering.  I forced myself to brush my teeth and lie down.

Then a severe pain began in my head.  Hubby, though exhausted from driving, rubbed my neck and back until I could handle the pain.  He coated my back with the latest doctor-prescribed pain gel and I was able to sleep.  I don’t know what I would do without him.

Today, I’m paying for the trip with severe pain and so much swelling.  I’ll be using my pain gel, extra advil, and my tens-unit to knock this down a little.  I’m so thankful to have these tools.  I don’t have any prescription pain medication, but will double my muscle relaxers.

Emotionally, it can be very hard to visit your hometown.  Family drama brings stress, good and bad.  This is expected, but it can sometimes surprise you at the overwhelm.  Emotional pain or stress can cause my physical pain to feel more severe.  I think the combination is truly exhausting.

When dealing with emotional and physical pain, I have to use all my pain-reducing tools to make it through the day.  I’m also thankful that Hubby and I can share our feelings and pray together.  Turning problems over to God brings peace and lessons our stress.  I know God doesn’t want us to worry about things that are out of our control.  What a blessing to have a savior to turn to and trust with everything in life.  God is good!

@2018, copyright Lisa Ehrman

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This past Sunday, I was blessed to celebrate another birthday and Mother’s Day.  It was a special day with my children and husband and we had a quiet day at home.  Memories were made and joy was overwhelming!

But, most days aren’t days for celebrating.  Most days are made for surviving.  The typical day in my life is directed by the chronic illnesses and the symptoms they cause.  I would prefer to say that chronic illness doesn’t define me, but it certainly hinders me.

If I’m not wise enough to pace myself, the chronic illness symptoms will ruin my day.  That’s why my typical days focus on taking care of myself to prevent my symptoms from getting worse.

I start my days with breakfast and pills.  I always look forward to a couple of cups of coffee to help me to wake up.  After a little blogging, my goal is to shower.  Unfortunately, today came with an Aura.  I feel more tired and worry that a migraine will follow.  Many times I leave the shower and need to lie on the bed for about 10 minutes, because my heart is racing and I’ve become breathless.

On a good day I’ll style my hair and put on make-up.  But, many days my hair just dries naturally as I rest on the couch.  Lunch comes with more pills.  Putting a load of laundry comes next.   Laundry is one chore that I can do easily, because there isn’t much bending or lengthy standing.   I sit to fold clothes and towels and put them away after I’ve rested again.

If I’m able, I’ll do another load of laundry.  I check my appointment schedule and see that my new (awful) insurance requires a pre-authorization for each appointment with a specialist.  So, I spend over an hour making phone calls.  Most of this time is spent on hold as I listen to terrible music.  Another call goes to my allergist to appeal the insurance refusal to pay for my Epi-Pen.  I can’t believe that they’re not covering this life-saving device.  These types of phone calls can really stress me out, because I have to explain these problems over and over.

Dinner plans always include a very simple menu that I can quickly throw in the oven.  If I’m smart (and my brain fog doesn’t affect me) I’ll put on a crock-pot in the morning.  My easy meals are usually chicken with vegetables or home made pizza.  These two meals don’t require me to stand up very long.  Standing more than a few minutes brings on attacks of simple fiber neuropathy.  The tingling, burning, sweats, dizziness, and nausea force me to lie down often.  These are my worst symptoms and prevent me from enjoying many activities.

More pills come with dinner and more at bedtime.  Isn’t that exciting?  We usually watch tv until bedtime.  Hooking myself up to the CPAP is my last activity for the day.  This is what a typical day for me is like.  Yes, it’s very boring, but I do the best I can.  I almost never give up hope that this typical day can change for the better.

I’m grateful that God continues to give me life and pray for better health.  But, more than than that, I pray that He will allow me to encourage others in their journey.  His love really does give me an inner peace.

Disclaimer: I’m not a medical expert. If you need medical advice, please consult your personal physician.

@copyright Lisa Ehrman

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It’s another Mother’s Day at our home and millions of others.  It is such a blessing to be able to celebrate this holiday with two of my children.  I’ll be able to see my third child soon.  We’ll eat a delicious meal and share many memories and laughs together.  Hubby has brought me some gorgeous pink roses, because they’re my favorite!

If I didn’t have chronic illnesses, we would probably picnic and take a hike or eat at a nice restaurant.  But, it’s much easier and less tiring to eat at home.  And, spending time at home is fun.  You know, it doesn’t matter if you suffer with chronic illnesses or not when your family is close.  This is a day to count my blessings and be thankful.

Sometimes Mother’s Day can be a dreaded holiday.  If you have sadness or tragedy on this day, I’m sorry and pray that you find comfort.  There are tough circumstances with motherhood and with infertility.  Having children isn’t easy and I had 6 high-risk pregnancies, with 3 ending in miscarriage.

Whatever your life brings you, I hope and pray that you can enjoy Mother’s Day.

“Charm is deceptive, and beauty is fleeting; but a woman who fears the Lord is to be praised” Proverbs 31:30

@2018, copyright Lisa Ehrman

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I’ve been writing about EDS Awareness Month for quite a few years.  Even though my great readers have heard about this, most people haven’t.  Many doctors are also unaware or are poorly educated about it.  Because diagnosing it and treating it are such a problem, it’s important to keep awareness movements active.

Ehlers Danlos Syndrome is a genetic condition that has many different types.  Recently, the list of types has been updated to include more rare types.  Here are the types:

  • Classical
  • Classical-like
  • Cardiac-valvular
  • Vascular
  • Hypermobile
  • Anthrochalasia
  • Dermatosparaxis
  • Kyphoscoliotic
  • Brittle Cornea Syndrome
  • Spondylodyplastic
  • Musculocontractural
  • Myopathic
  • Periodontal

These syndromes are a group of connective tissue disorders and can affect the body in different ways.  These can be inherited.  Some of the characteristics are hypermobile joints, skin that stretches more than normal, and frail tissue.

Testing for diagnosis includes genetic tests for all types except the hypermobile type.  I have the hypermobile type, which is very common.  I’ve had this since birth, but was only diagnosed at age 51.  From the time I first complained of symptoms to my doctor to the time of diagnosis was 13 years.

Diagnosis of EDS takes too long and many patients are dismissed or misdiagnosed before the true diagnosis is discovered.  Many years of suffering and unneeded improper treatment is the norm for EDS patients.  Many of these improper treatments can cause further pain and suffering.  This was certainly true in my case.

Like most diseases, there can be various levels of severity in EDS.  The Vascular type of EDS can cause death at a fairly young age.  This is because this type causes rupture of organs or arteries, even at a young age.

Diagnosis must be done by a Geneticist, who are often hard to see, because of lack of referrals.  If you feel like you might have a form of EDS, keep requesting a referral to be seen by a geneticist.  It took me a long time, but I didn’t give up.

To find out more about EDS, please check the Ehlers Danlos Society   Their website has everything there to help you with education, awareness, and more!

Disclaimer: I’m not a medical expert.  If you have medical concerns, please consult your personal physician.

@2018, copyright Lisa Ehrman

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I was born on Mother’s Day and this year my birthday again falls on that day.  Hubby insisted we celebrate the days separately and this year I agreed to the idea.  So, yesterday he grilled some scrumptious salmon and both of my sons came to eat.  The food was delicious and we all enjoyed visiting and catching up.

In the evening we played one game of Scrabble and then crashed in bed.  This wasn’t really a rip-roaring party, but for me it was amazing!  Because I’m feeling awful and fatigued, I don’t celebrate very big.  There are plenty of enjoyable “activities” to help me celebrate turning 56.

We decided to try a few fun things this week to help make the Birthday-Mother’s Day week memorable.  Playing board games can be done, even if I need to lay in my recliner.  Here are some other ideas we want to try this week:

  • Coffee shop adventure – This is something we can even enjoy in the drive-thru.
  • Movie night – We want to watch a movie together, and it will be silly.  We have a great collection, like Good-Burger
  • Try a new breakfast shop – If I’m able, we might head to a new place and try their “famous” biscuits.
  • Grill out – Hubby is so sweet to grill some turkey burgers.
  • Puzzle time – Putting a puzzle together gives you lots of time to talk.
  • Roast marshmallows outdoors – make S’mores if you like.
  • Visit a bookstore/cafe – If I’m able, there is a charming bookstore that offers “more” coffee.
  • Sno-Cone yumminess – Grabbing a delicious summer treat, even if I can’t stand in line.

These simple, yet fun, ideas please me and my family and can make days feel special.  With chronic illness we’ve learned to be very flexible.  Some days I won’t be able to do much of anything.  Those are the perfect days for just chilling with a movie at home.  The small things in life can be very meaningful and bring lots of laughs and smiles.

What are your favorite ways to celebrate special days?  There are so many events this time of year: birthdays, graduations, weddings, and mothers/fathers day.  If you are dealing with a chronic illness life, try to make the best of it.

@2018, copyright Lisa Ehrman

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Whew!  What a week!  This week was a busy time for appointments.  I had physical therapy twice, a mammogram, gynecologist, and allergy specialist appointments.  I’ve learned, yet again, that too much activity equals severe consequences.

Wednesday at PT, the therapist increased my exercises too much and I came home to crash afterwards.  Thursday was the day of the medical appointments.  We also took our youngest out to celebrate his 4.0 for the semester at college.  When I got home, I felt like I had food poisoning, but it was just severe nausea.

I slept only a few hours and was sick all the next day with headache, nausea, and worsening pain.  My vision was so blurry and still is today, though the nausea is a little better.  The pain is still unbearable, but I’m just resting as much as I can until this improves.

Flaring from too much activity is rotten, but I just can’t seem to avoid it sometimes.  Often, I just am stubborn and don’t want to cancel an appointment.  Most days I’m exhausted from just showering and doing my hair and make-up.  It’s a never-ending cycle of dealing with chronic illnesses.

These are the times when you cry and pray and just want it to stop.  Then, when the worst moments pass, I can give thanks for some little-something that is a blessing.  The flowers that my hubby brought me, and his encouragement brought me to happy tears.  There really is joy in this journey.

@2018, copyright Lisa Ehrman

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Disclosure: Affiliate link included. 

Welcome to another Free Online Webinar that could impact your health!  The Food Revolution Summit is going on now and you can watch and learn for free!  Subscribe at the link below to register and listen in on these experts in the fields of diet and food.

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The May Link-up for People With Chronic Illness

Hostess: A Chronic Voice 

Remembering

I was born on Mother’s Day.  May is a month that I look forward to, but it seems to come around sooner each year.  Birthdays were always a big deal in my family and remembering these special days is becoming more frequent as I age.  Remembering the good days is common with older-aged folks.  Turning 56 this month makes me feel older.  I don’t think I would feel older if I didn’t feel so bad.  Chronic illness naturally causes me to remember the good days of my life when I was healthy.  Remembering is important, but I don’t want to dwell on the good days of the past in a self-pitying way.  I want to remember them just because they were good.  Life now can also be good, even if I’m hurting and am no longer healthy.

Caring

Caring is a word that I love more than I did in my past.  Caring is how I describe my family.  They care for me in word and deed.  By providing me with daily verbal encouragement, my family shows me that they care.  Caring extends to the way they act toward me.  My care-taker is my husband.  He’s had to take over many of the chores in our home.  These take up most of his time and he handles it really well.  Having chronic illness has changed me.  I’m more caring to those who suffer and to the injustices that they face.

Entertaining

Entertaining is something that I have a difficult time talking about.  It’s been quite a few years since I felt like entertaining others in my home.  I think that it’s important to entertain others as a way to serve and encourage them.  When I had people over for a nice meal or party in the past, I made sure that the house was clean, neat, and welcoming.  That’s not something I can accomplish now without my family doing most of the physical work.  If I entertain at all, I have to lower my standards and just try to enjoy the experience.  Maybe that’s a good change, but I still have a hard time accepting my limitations.

Designing

Design skills were never in my portfolio.  Having siblings with great design skills made my lack of talent even more obvious.  I never minded it too much, but wished that I knew how to best decorate my home.  I guess that’s why my home style could be called eclectic.  My taste in design has always been traditional with a nice beige theme.  I say this with a sense of humor because I’ve been called boring before.  As my health has grown more poor, I’ve had the desire to change my design style.  My goal is to change the boring beige to beautiful colors and more of a feminine design.

Believing

The word belief to me predominantly refers to spiritual belief.  My belief in God shapes all my thinking.  Although I would love to be healthy, I believe that God has my best interests in mind.  When I get discouraged or angry at my condition, I can turn to God, who gives me peace.  Because I’m a Christian, dealing with a life of pain and sickness is possible.  By believing in His good purpose, I try to use my life to benefit others.  This is why I wanted to blog, sharing my journey with others.  I’m believing that good can come from it.

@2018, copyright Lisa Ehrman

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