Living Despite

One thing you learn quickly when living with a chronic illness; change is constant.  Whether it is change in meds, change in doctors, change in diet...if are living with a chronic illness, you get used to change rather quickly.

The surgery I had a couple months ago caused a huge flare-up with my Fibromyalgia.  Being someone who is paranoid about becoming addicted to prescription drugs (thanks mom), I usually do not take pain medication.  Well, this time I had to give in and take the meds.  The pain was unbearable at times.  Not just my surgery site, but my entire body. Eventually I was able to find a natural alternative.  It helps so much and does not put me to sleep or have crazy side effects.  The downside is, insurance doesn’t cover it so it is an out of pocket expense that is a little expensive.  The cost is worth it though.  

But, I have also found it is time to make a lifestyle change.  I am going to try a different diet to see if it also helps.  I am changing to a pescitarian diet.  I will eat mostly veggies, but also allow seafood/fish.  I am hoping this helps with the internal inflammation.  

When living despite a disease you take the bad with the good. For me, the good was going on a motorcycle ride, enjoying an amazing lunch, and spending a few stress free hours with someone I love.

The bad - I am still dealing with the flare up. It started 8 weeks ago and is not letting up. I found Kratom which helps but it wears off before the end of my day.

Rehabbing my knee afterACL reconstruction has definitely tested my patience. Yesterday I finally saw real progress though. I actually pedaled a stationary bike. Like full motion!!!

Sometimes you have to find the humor in situations. Currently my right leg, ankle, and foot could be a stand-in for any of the Flintstones!

Our lives are crazy. Those of us living with autoimmune diseases, it can be even crazier. We are so focused on trying to be “normal”, take care of our kids, our spouse/partner, our job, and any number of other things, we forget about ourselves. The consequences for that are usually devastating. Extreme pain, swelling, days in bed...

We need to take time for ourselves. Pamper ourselves. Whether it’s a haircut, a float session, a mani/pedi, or just a ride in the country. Allow yourself time to recharge, recover, and rebuild.

Currently sitting outside a lab waiting for it to open. Keeping fingers crossed they will be able to hit a vein and get the blood drawn. Had a decent weekend thanks to sleeping in yesterday. Staying positive that I will have a great week as well.

Saw there was another celebrity suicide this weekend. A wrestler took his own life. I don’t know his story. I only know he he found himself in a place where he no longer found hope for a positive future.

I understand this feeling. There have been many times in my life I wondered if I could face another day. I have laid in my bed, fetal position, pain wrecking my body, even my hair hurt. I just wanted the pain to stop. In those times, I have to remember my kids, my boyfriend, my friends and family. I think about all the good times, all the positives. I make a list in my head. I remind myself not every moment is like this one. And sometimes I have to reach out. I have to talk to someone. Maybe not about my thoughts or even about the pain but just talk to someone to remind myself I am not alone.

Sitting in the Rheumatologist office waiting to have my blood drawn. After this it’s off to get a Doppler ultrasound to make sure I do nkt have a blood clot. This is a day in the life of autoimmune disease. Blood tests, poking, prodding, guessing...

Lets open up the betting right now on how many times they will have to stick me before they get any blood. My guess is three.

Three sticks no blood. So now I have to wait until Monday and go get my blood drawn ata lab. Ugh.

I am five weeks removed from ACL reconstruction. Unfortunately due to fibromyalgia, my pain and recovery will last longer than someone without fibromyalgia. My leg, ankle, and foot have been swelling off and on. Last night it was the worst it’s ever been. So off to the doctor.

It could be a by-product if the fibromyalgia. It could be a blood clot. It could be many things. Friday I have an appointment with a rheumatologist as well as an appointment for a Doppler ultrasound to make sure it isn’t a blood clot. Until then, it’s just elevation and ice. Not easy to do when working but doing the best I can.

I think one of the most difficult things is the unknown. Fibromyalgia affects your entire body in a myriad of ways. When something new happens you don’t know if it is because of the fibromyalgia or if it is something new you learn to live with and fight. Not knowing is terrifying. Especially when you have two children. Negative thoughts can take over if you let them.

I choose to remain positive however. This is just another problem I will find a solution for or work around. It is another learning opportunity for my kids and myself.

I decided to start my own blog during a dream last night.  When I share a little of my life story, many people are surprised I am doing so well.  If I shared my entire story, I would imagine most people would not comprehend how I am still alive.   While my past will more than likely seep into some of my postings, my aim is to focus on my present and future on this blog.  So...

This past February, I messed up my knee.  Originally thought to be just a bad sprain turned into a full tear of my ACL and a tear of my MCL.  My MCL healed nicely on it’s own.  My ACL required surgery; which I had to wait until the end of June to get.

Now, for most people, ACL reconstruction isn’t fun, but it is manageable.  Then there’s me.  A couple years ago I was diagnosed with (are you ready for the list?):

Fibromyalgia, Hypothyroidism, Hashimoto’s disease, Polyarthralgia, Myalgia.  

What does all of that mean for me and recovery?  I’m so glad you asked.  It means a longer and more painful recovery time.  All the above diagnoses, cause wide-spread pain on a daily basis.  There is no cure and most medications are not very effective.  

I was sent to a specialist a couple years ago because of unexplained pain in my hands and my ankles/feet would swell for no reason.  As the year went on, the pain got worse.  The meds they put me on didn’t help.  I began researching.  Decrease your stress, get enough sleep, no junk food, etc.  So I did it.  I reduced my stress, didn’t go out as much as I used to, and started eating better.  While my pain didn’t disappear, it became manageable.  It didn’t really impact my daily life much at all.

Then I shredded my ACL.  I honestly did not think about my Fibro or any other other problems before my surgery.  I had been doing so well, it just never came to mind.  

However, I am now a month out from surgery and the pain is almost unbearable.  Not just my knee, but my entire body.  From my shoulders to my toes, there is not a part of my body that doesn’t hurt.  If I try to massage a muscle that feels sore, it’s like I’ve put myself on a torture rack.  

However, I wake up every day and go to work, go to physical therapy, do things with my kids, with my friends.   I put on a smile to hide the pain.  I save my crying for the shower or late at night when I’m in my bed alone so no one can see.