CategoryEhlers Danlos Syndrome

December Pain

Ah, the business of the Christmas season!  After traveling back from my trip, my body is in meltdown mode.  I got home and was faced with the dirty house, Christmas boxes of decorations piled on the floor, and untold loads of laundry.  Does this sound like your situation?

December Pain

I was so fired up to get Christmas decorations up and the living room clean that I really overdid it.  This is my dilemma.  And, I failed again at pacing myself.  Reminding myself doesn’t work, because my desire to work was too strong.   It’s truly almost laughable how crazy chronic illness can make a person.

Well, the lights are twinkling and my home looks very cozy and festive.  My ice pack is being used often.  Boy, is it soothing to my lower back!  I’m loving the online deals this time of year and my shopping is in full swing.  Packages are starting to arrive and can be wrapped another day.

My sciatica has been a little better, but flares much worse after doing anything.  My arthritis/EDS pain is what is killing me.  The bones in my feet hurt so bad!  Arthritis in my MPT joint create the pain, but now my ankles are also hurting.  I tried wearing ankle braces.  I think the point is to wear them before the pain. Sorry about all the sarcasm, but that is my natural tone when I’m hurting.  It helps me to see the humor in my situation.

As I try to cope with my pain, I’ve been reading tons of articles and medical information about EDS/Arthritis foot problems.  I see much conflicting advice on what type of shoes (or going barefoot) to wear.  With arthritis of the MPT joint, my stiff soled and rocker-bottom shoes are helpful.  I’m still confused about my ankles?

My 3-year appointment with the (EDS) Geneticist is tomorrow.  I’ll have lots of fun things to tell her.  In the past, she only sent me to pain management and told me to read online to find help.  I hope that she can offer more specific advice tomorrow, because I really need it.

December

As you prepare for Christmas, I hope you’ll have better health days.  As we all deal with our physical pain, remember to consider your emotional health, too.  Going “home” can be rough, if some people aren’t supportive.  I try to apply the Golden Rule, and it has helped me.  I can’t fix other people’s issues and they may not understand mine.

I’m doing my best to keep Jesus’ birth foremost in my mind.  Christmas comes on us quickly and the festivities are great, but it’s the birthday of Christ.  I want this to be my focus.  God bless you as you prepare for this most wonderful time of the year.

@2018, copyright Lisa Ehrman

Chronically Dismissed

Living with Chronic Illnesses is an uncertain journey.  I don’t know from one day until the next what crazy thing will happen.  It’s the same way when I have a doctor’s appointment.

Wheelchair

Yesterday was my dentist appointment to get two “tiny” fillings.  The dentist assured me that I wouldn’t need any shots to deaden the gums.  But, after the drilling started, so did my tooth pain.  So, I was the unhappy recipient of lots of medication.  That isn’t so horrible, but it doesn’t wear off quickly for me.  The evening was not fun, because I felt like I had the flu and couldn’t prepare dinner.

Today was a dreaded day with two doctor’s appointments.  I was meeting with my new neurologist.  I didn’t know anything about him, but was told to find a local neuro, because my other doctor only dealt with his specialty of epilepsy.  I was pleasantly surprised with this new doctor.  He took plenty of time with me and discussed all the options for treatment.  He had read all the medical records that showed I have Small Fiber Neuropathy.

He and I agreed that the first treatment to try for my Sciatica would be to double my Gabapentin.  Even though the side- effects are bad, the Sciatica is worse.  It prevents sleep and my use of Advil has got to stop.  My blood work has shown how Advil use is harming my kidneys.  I’m very encouraged that this treatment will be the first thing we’re trying.

I hate that medicines are trial and error, but that’s just the way it is.  I really do hope for good results, but so far I’ve been quite disappointed.

My next appointment made me sad and now I’m feeling angry.  What I went through is no different than what many of my Chronic Illness/Pain peers have experienced.  I had my 3-month check-up with the general physician.  I wanted to discuss the possibility of my getting a wheelchair.

For the past 4 years I’ve been basically stuck in my home, on the couch.  I haven’t been able to attend any events, festivals, vacations, do house chores, or even stroll through my neighborhood.  I haven’t been able to go shopping or anything.  All the medicines that I hoped would help and all the physical therapy orders have resulted in nothing.  I’m not getting better.

So, what did my handy-dandy NP say about wheelchairs?  “You’re too young for a wheelchair”  “I don’t have any diagnosis that warrants a wheelchair”  “Are you depressed?”  “You should just do things, no matter the pain”

I can’t remember all the things that she said, but the person dismissed my pain and my need to live a functional life.  She made me feel lazy, depressed, and weak.  But, I’m not lazy, depressed, or weak.  All I am is a person who suffers.  All I am is a person who wants to experience life, instead of letting it fly by.

alone

This dismissal of Invisible Illness and the pain that accompanies it is wrong and should never happen.  For uneducated physicians to ignore diagnosis’s of Ehlers Danlos Syndrome, Sjogren’s Syndrome, Arthritis, Scoliosis, and Degenerative Disk Disease is insane.  Does she think that I’m going to be able to push through the severe pain and fatigue that I live with?

Doesn’t she know that many children and young people need wheelchairs.  Doesn’t she know that many people use wheelchairs, even though they can walk.  Many can walk, but not very far.  And, the exhaustion and pain that follows isn’t worth it.  Shouldn’t she know?

Invisible Illnesses are real and have real consequences.  Chronic Pain is real, although it can’t be seen.  The discrimination faced by those of us with Invisible Chronic Illnesses is real and it is horrific.  It is also getting worse.

@2018, copyright Lisa Ehrman

It’s Not My Job

As I work to correct my former mindset, I realize how ingrained my old thinking had become.  “Getting Better” was my job, and I worked at it 24/7.  It was always in the back of my mind and what I discussed on a regular basis.

job

Striving to Get Better can help a person, because we don’t want to give up on our health.  But, attempting to get better by constantly searching out new means of accomplishing it, can take your entire life.  After all these years of my attempts to find a magic pill or treatment, I’ve come full circle.

During these years, I discovered that I had more diseases than I first thought.  With this new knowledge came new worries.  How was I to treat these diseases?  And, as you discover that you have too many disorders to count, it can be overwhelming and even discouraging.

I feel like I have reached an end to the diagnosis stage (unless another illness develops).  I’m in the midst of waiting to see if the medications will help.  As I said, Plaquenil takes 6 months to a year before the effect will be certain.  So, doctors aren’t wanting to start me on any other drugs right now.

Now that I’m trying to change my mindset from Getting Better to living right now, I feel relief.  I’m trying to focus on gratefulness even more and enjoy each good thing.  God has blessed me with a great family and support.

relax

One of my goals is to add beauty into the day.  Instead of wearing black sweats and a grey tee, I’m trying to add a colorful top.  The days when I’m physically able, I’ll make more of an effort to put on some makeup.  There are still days when I’m not able to even get out of my pajamas, and that’s fine.

Without putting myself on a guilt trip, I still want to do more in my day.  Yesterday I was able to get up and do quite a few things: laundry, trimming my dog’s hair (at least his head), and filing all the stacks of paper in my living room.  Doing these chores made me feel victorious!

Today, I’m definitely paying for it.  But, the way I look at it, it’s better to do something one day and nothing the next, than doing nothing ever.  With chronic illnesses, I feel that we need to keep a sense of humor.  With chronic pain and illness, I try to laugh at some of the things that happen to me (when I can).

After taking Advil this morning, I was able to put on a bright, colorful shirt with my leggings.  Now, when I pass a mirror, I can notice my cute shirt instead of my messy hair!

I’m also trying to get away from putting myself down for gaining weight and not exercising.  Everywhere I turn, I hear that I need to lose weight and exercise to get better.  Well, I want to do that, but it’s not working.  Physical therapy continues to push me to do static stretches, which are bad for Ehlers Danlos and make me hurt more than ever.

flower

The diet isn’t bringing any weight loss, but it makes me feel better.  My digestion is better and I feel that over time, it can help me to be healthier.  That is my goal.  If the Plaquenil gradually increases my energy level, the exercise can start.

What I’m trying to say is, it’s not my job to Get Better.  People with well-known and researched diseases have established treatments that have been proven to work.  I have EDS, Sjogrens, Mast Cell Disorder and more, and these don’t have any cure or treatments that work for everyone.  The trial-and-error treatments take a long time to work.

My goal is to be content, take my pills, and try to live a happy life.  I have God’s blessing whether I’m sick or well.  His blessing to me is the peace and joy that are mine.  Many people won’t understand, and that’s alright.  It’s also not my job to make them understand.  I’ll just keep focusing on contentment.

And let the peace of God rule in your hearts, to the which also ye are called in one body; and be ye thankful.  Colossians 3:15

Disclaimer: I’m not a medical expert. This article contains only my opinions.  If you have a medical concern, please consult your personal physician.

@2018, copyright Lisa Ehrman

 

How To Deal With Pain From Storms

Living with chronic pain has many challenges.  My normal level of pain has been topped by my recent experiences with Sciatica and Shingles.  My Shingles episode is almost over.  The nerve pain has decreased tremendously!

Storms

The Shingles has dried up and soon will be gone.  And, good riddance!  The pain from Sciatica has been a little better and I’ve been using much less Advil.  This is a relief, because I worry about my kidneys.

After seeing the Rheumatologist on Friday, I was relieved that my kidney and liver numbers were in the normal range.  All of the abnormal numbers were still the same, but not in a severe range.  I’ll be speaking to my GP about this next month.

The rheumatologist didn’t make any medication changes, except to reduce my muscle relaxers during the daytime.  She thought that this change could improve my energy levels.  She hopes that the Plaquenil increase will produce a stronger effect over the next few months.  It’s hard that auto-immunity drugs take so long before the effectiveness is evident.

The dentist found two very tiny cavities yesterday.  Ah, the joys of Sjogren’s Syndrome!  I’ll have those fixed soon, and he said that I won’t need any pain shots.  That is a relief!  My mouth dryness has been worse lately.  My eyes have been worse, too.  We rearranged our living room furniture so that I’m closer to the tv.  I really couldn’t see it well.

We live close enough to the hurricane that we’re bracing for lots of extra rain. I dread the storms, because that always means extra pain.  Rain storms also bring me headaches, and sometimes, migraines.  Because of this, I have to have everything ready to fight back against this extra pain. You’ll see my favorite ways below:

storm

These are the easiest ways to reduce pain or stop it.  There are lots of other ways, and you probably have your favorite.  During storms, if the power doesn’t go out, it’s relaxing to watch tv.  I enjoy having the tv on sports, good movies, and funny shows.  Laughter is great for helping some people forget about their pain for a little while.  Of course, when you feel bad enough, tv and lights are just too much.  Peaceful, quiet rooms are better during a migraine.

We all have to do what helps us.  Try different things, and don’t give up.  And, on those days when you just can’t cope, go ahead and cry.  Never give up that tomorrow will be better.  That hope is what helps us to get through the worst days.  I always pray for God’s help and I am comforted by His mercy.

I hope you have a low-pain day and weekend.  God bless.

The Predicament of Pain

Predicament

I’ve been cheating.  Having Shingles and Sciatica at the same time has caused me tremendous pain.  Although the doctor told me not to take Advil, I’ve been taking it.  My kidney numbers go down when I take Advil, but they were in the high 50s.

I was given a small amount of Lortab for “break-through” pain.  This dose made me very sleepy and reduced the pain temporarily.  It certainly wasn’t a magic pill for the severe nerve pain I’ve been dealing with.  After many sleepless nights, I tried a 800 mg pill of Advil.  (I had a bottle left over from another prescription).

The 800 mg Advil knocked all my pain to such a low level!  So, I’ve been taking this once a day so that I can sleep.  Taking a normal dose during the day helps a little, but my chest, back, and ribs are still so bad!

When I first had all this chest pain, I worried about my heart.  But, as I read medical websites it made sense.  Because Shingles is an infection of the nerve, it was easier to understand how the pain occurs in my chest.  It’s not so much that the skin is sore, but everything deep is sore.  The rib hurts and feels swollen.

My dose of Gabapentin is 900 mg, but the recommended Shingles dose is 1800 mg.  No wonder it hasn’t stopped all my nerve pain.  I should have already seen my new neurologist, but they didn’t want me to come in while I was contagious.  Now I have to wait until late October for a new appointment.

I only have a one month prescription for Gabapentin and will need to talk to my general doctor to prescribe it until October.  This Shingles illness has really come at a terrible time and will continue to cause me stress.

All this is just par for the course of living with multiple chronic illnesses.  There is always a battle to balance medications, doctor’s appointments, and side-effects of medications.  I feel like I’m losing the battle now.  I feel over-medicated and groggy.

pain

Sometimes I hear people say that I should just quit taking so many drugs.  But, it’s not so simple.  I have too many illnesses that need to be treated.  I don’t have a doctor that oversees all of them; I have numerous specialists.  My general practitioner who I trusted has left, and I’m left with a NP who doesn’t seem knowledgable.  She isn’t taking over in the way I need.

So, I do my best to ask the questions about medications and treatment options.  All my specialists have the same answer.  They only want to address their specific specialty.  So, I’m left to handle things the best way I can.

I read all I can about my diseases and try to ask intelligent questions.  I hope and pray that the medicines I’m taking don’t cause too many severe side-effects.  And, I pray that I’ll continue to be able to purchase insurance that covers all my conditions.

As humans, we all need to be kind and understanding.  If you’re blessed with a healthy body, be thankful.  Don’t look down on people who appear weak; you never know what they’re dealing with.  A person can look healthy, and yet, be suffering a great deal.  Always remember the Golden Rule.

@2018, copyright Lisa Ehrman