Author: livingwithsclero

What now?

I went to California this weekend for a family reunion.  I visited appropriately for the first 2 hours and fell asleep like a loser the last 2 hours.  I absolutely could not stay awake no matter how hard that I tried.  My husband just wanted me to be his fun, social wife but I failed.  I wish that I could feel good all of the time.  I work so hard to stay healthy and exercise just so that I can put on my smile and be a fun person to be around.  I do not want to be like some of my patients who are hyper-focused on their every ache and pain.  I want to be a positive person and just pretend that I am fine and that this is not happening.  Some days I win (yay me!).  Other days, I do not.

I have to take a pain reliever just so that I can run.  It really is ridiculous.  I had to cancel on my run buddies this morning because I felt horrible when the alarm sounded.  Of course, this set the mood for the entire rest of the day.  I eventually pulled myself to the gym at 2:00 pm but forgot to take an Aleve prior to running.  Yeah, that didn’t go well but at least I was only an embarrassment to myself.  I ran about 3 miles and had to stop.  I finished with weights so that I could at least get a 45-minute workout accomplished after eating that huge burger and fries for lunch.  I probably should try to eat healthier but you have to enjoy some things in life, right?

I do not know what all of this means but I do know that I have struggled a lot more than usual the last week or so.  People are noticing things that I was always able to hide before.  I’ll have to do better because I NEVER want to be seen as sick even if I am.  I work with sick people every day.  I teach them how to recover after suffering a stroke or heart attack, how to heal from surgery, how to overcome pain, and even how to exercise for the first time.  I should be able to fix myself too, right?

Systemic Scleroderma Fact of the Day:  Fatigue is very common in Scleroderma. Doing daily housework or putting in a full day at work is exhausting. By the end of the day, there is barely enough energy left over for spending time with family, enjoying hobbies and activities, or exercising.  Activities are more demanding because the body is less capable of using energy reserved for everyday activities because some of this energy is used in the body’s attempt to heal itself.  Fatigue is seen as a sign of laziness, a lack of motivation to get things done, or a sign of personal weakness. Sometimes people with Scleroderma feel bad about themselves because of their fatigue. They blame themselves for not being able to fight against their exhaustion. This just adds to the problem.

Happy Note:  I am not giving up.  I can still exercise and run.  I can still work a shift at the hospital on my feet all day.  My husband is not mad at me.  I was able to be present for my kids at Disneyland without having to go sleep in the car or something dumb.

The Humor in a Bad Situation

When I found out that I had an incurable disease, I worried about revealing it to others because I did not want to be seen as fragile, sick, or dying.  Now that I have shared my news, I guess I thought things would be different.  Things are not.  My friends still have every bit of confidence that I can run another marathon with them, I am still treated as if I am stronger than I am, and I am still the one everyone seeks advice from when they are going through something difficult.  I continue to lead my small group at church because I want it to continue and someone needs to do the work.  My small group is a safe place where I can just be broken and accepted but even at this place, I am not seen as broken and incurable.  This is what I wanted.  I did not want to be treated differently but I sometimes think that my will to be strong has resulted in an isolated journey. Sometimes, I am ok with that.  Other times, I am not.  Mother doesn’t understand. Husband is asleep. Wine helps.

Why Am I So Tired?

I just woke up from a 2-hour nap.  I am drinking a diet coke trying to wake up before my kids get home.  Why am I so tired?  I ran with my friends this morning and they asked if I have signed up for the Houston marathon yet.  I have not.

IMG_1506

I had the day off from the hospital so that I could attend 4th-grade graduation/awards at my daughter’s school.  We enjoyed watching her get her awards and loved seeing her look so proud.  Who decided that it was necessary for children to get a medal for completing 4th grade?  When I was a kid, elementary school was not completed until 6th grade and nobody received a medal.  After the school awards, we were escorted back to the classroom for classroom awards.  During this time, the teacher made sure that every single child in the class got an award.  Unfortunately, real life does not work that way but it will be my job to ensure that she understands that lesson.  When I was a kid, if you didn’t earn an award, you didn’t get an award.  Sometimes there were tears but the kids learned that hard work was necessary to be acknowledged.

I have been trying to faithfully read the Bible on a daily basis.  Today, the first thing I read was, “by staying in touch with God, we will have the needed wisdom to meet the great challenges of life.”  This statement feels so true because a sense of peace seems to almost always accompany my Bible reading time.  It would be very easy to turn away from God right now.  Therefore, I realize that I need to be rigid about reading the Bible to remained focused on what is important in life.

Systemic Scleroderma Fact of the Day:

A patient’s prognosis is optimized with close monitoring of overall health status and treatment of complications by rheumatologists, pulmonologists, gastroenterologists, nephrologists, and cardiologists.  The critical period of organ risk is generally within the first three years of skin involvement.

Happy Note:

The diet coke has kicked in and I am officially awake and ready to greet those precious kids as they get off of the bus.  It is the weekend and I look forward to a lazy Saturday.

The Other Side.

Today I woke up in a “blah” mood.  I was not in the mood to be positive.  I was not in the mood to be strong.  It’s ok.  I suffer from depression.  I can not overcome these feelings every single day.

How can I have an incurable disease?  I convince myself how full of life that I am and how the facts of my medical status must be a mistake.  Then, I suffer a day of unbearable fatigue where I seem to require a nap every 3 hours.  If only I had not had my children so late in life.  Maybe then I could be sure that I would be around for their college graduation and marriages.  I want nothing more in the world than to raise my babies into adulthood and be present for all of the challenges they will have in their lives.  I wonder if I would work as hard to fight this disease just for me.  I’d like to think so.  Of course, I have that crazy, psycho kind of love for my kids.  I don’t have that kind of love for myself.

I went running with my friends this morning and then I made it through 5 hours working at the hospital.  After work, I immediately had to take a nap in my car before I could drive home.  While at work, I had an episode with my throat closing up on a piece of sandwich and I did not have any water with me (I know better than to eat without water around).  During these episodes, you either get the food back up or force it down with a drink.  Water usually works for me but it is terribly painful to swallow when your esophagus is narrowing.  I seriously believe that it is almost better for the food to come back up but that is never ever socially appropriate : )

I am supposed to run my 6th marathon in Houston with my friends (January 2018).  They do not mention it and I do not mention it but there is no way for me to be certain that I will be able to complete another marathon.  I am just going to train as if I can and hope that I can.  I just do not know how long I will be ok until I am not ok.  I have already had a pulmonary function test that shows lung involvement but this has not yet seemed to affect my breathing ability during my runs…..stay tuned!

This post all goes back to one thing.  No one should ever assume that they know exactly what someone else is going through or that their life is perfect.  I am certain that I was viewed today as a fit runner, a hard working physical therapist, and a great mother. Only I was aware of the unbearable fatigue that I was experiencing, the neuropathic pain I felt in my feet during my morning run, the difficulty I had as I barely got a piece of sandwich down my throat, and the nap I had to take just so I could be the mother my kids deserve.

Leave My Skin Alone!

As I continue this blog, I am getting braver.  The first picture shows the darkened discoloration of the skin underneath my breast.  The skin is colored this way underneath both breasts but only one side is necessary to show that something systemic is going on.   Super sexy, right?  Then, the other picture is of my right leg.  I have had this hard, dried up discoloration area on my leg for almost a year now.  It is also super attractive and the questions to why it is there are endless.

 

Systemic Scleroderma Facts of the Day:

The average life expectancy after systemic scleroderma is diagnosed is 12 years. This is because the condition typically worsens over time. Patients who have systemic scleroderma are most probably to die as a result of heart, kidney, lung, or gastrointestinal (digestive) complications.

Happy Note:

I am meeting my friends at 5 am to run 6 miles.  I have friends.  I can still be active. Then, I will go to the hospital and be a physical therapist all day which I enjoy.  It is not all about me. There are many others that have medical conditions and pain who are struggling far worse than I am.

Bruises, Bruises Everywhere!

It happened again!  I woke up with unusual bruises with unknown causes.  I used to think that I might have hit something without being aware but look at the location of these random bruises.  I call these bruises “not real bruises” because I did not do anything to get them.  Is it the scleroderma? Is it something else?  I simply love having to explain the random bruises on my arms that appear as if someone has abused me. The ones on my legs are also a joy as my friends inquire, “what on Earth have you done?”

My systemic scleroderma diagnosis was obtained via a Scl-70 blood test, results from a pulmonary function test, and esophageal involvement.  Not being able to swallow or eat with your friends due to the possible embarrassment of choking stinks.  I had my esophagus dilated last year to help with the dysphagia.  Unfortunately, the problem returned after 2 months but the swallowing difficulties have been a lot less frequent and severe.  I do not yet have pain, as most systemic scleroderma patients, and contribute that fact to my running.  I have to believe that there is something that I am doing that is helping my condition.  I am also not yet on any medications except for high blood pressure medication which is odd since I exercise.  For my entire adult life, my blood pressure has always been almost too low.  Then, last year, my blood pressure was high.  I do nap WAY more than normal but that is my little secret too.

Systemic Scleroderma Facts of the Day:

There are two forms of scleroderma localized and systemic. The localized (limited) form affects the skin of only the face, hands, and feet. The systemic (diffuse) form involves the skin of the face, hands, and feet and also progresses to the kidney, heart, lungs, and gastrointestinal tract. Death is most often caused by lung, heart, and kidney involvement. Systemic scleroderma ranges from 50 to 300 cases per 1 million people yet I have this type of scleroderma.  I am scared but pretend well around others.

Happy Note:

My friends continue to invite me to run with them and pretend along with me that there is nothing wrong.  Of course, I have to wear long sleeves when it is just a tad cold so there is that random fact.  We ran 6 miles this beautiful morning and regardless what my pulmonary function test revealed, I am able to keep up with my younger running friends just fine…..for now.  I am able to physically complete my job as a physical therapist and run around the hospital without difficulty.  My children make me smile every day.  My husband loves me.

Living Happily with an Invisible Illness.

Most everyone sees my happy side.  I work very hard at it.  I do not want to be seen as sick or dying.  I think people mostly view me as a mother, wife, physical therapist, and a marathoner.  It is doubtful that people realize how I live when I am not at work, not taking care of my family, not running, or have nowhere to be.  On these days, I rest, I contemplate life, I study the bible, and I may not shower until right before the kids get home from school.  I always do better on the days that start with a run but today I rested, did nothing, and set up this blog.  I am a 46-year-old Christian, I have run 5 marathons, I am a physical therapist, and I have systemic scleroderma.  I am a mother to a 10-year-old daughter and a 7-year-old son which makes having this disease much worse.  This blog will serve as an outlet for me.  A place where I can express my feelings, my worries, my life. Can you imagine going from never having to go to the doctor to now having a rheumatologist, a cardiologist, a pulmonologist, and a gastroenterologist?  It seriously stinks!