Finally, a diagnosis, now what?

I am a mother of two.

I am a wife of 25 years.

I am new to blogging.

I was recently diagnosed with RA (rheumatoid arthritis).

Now what?

Let's start from the beginning.  Or as far back as I think is relevant.  First, I am an overachiever.  I like to think of myself as organized and able to do anything I set my mind to. On the outside.  On the inside, I'm super lazy and completely a mess!

I think I got early symptoms of RA about 4 to 5 years ago, but because I was so busy showing the world around me all the things that I could do, I was ignoring my body.  The aches, the pains, the numbness...it was all gradual.  A twinge here or a shooting sensation there, could all be chalked up to being tired, pushing to meet the latest deadline, or just plain trying to live up to the ridiculous standards I thought I SHOULD achieve.

I think the earliest symptom was exhaustion.  I was over scheduled, over volunteered, over worked, and still found time to stay up late and get up early.  My functioning on too little sleep seemed a small price to pay when I had so much life all around me.  I was president of my daughter's high school band booster (parent) group, worked a full time job, was trying to raise two teenagers, my marriage was falling apart, my finances were a mess, I was volunteering for several community groups, and trying to be a triathlete in my spare time.  I had monthly late night coffee dates with the girls, weekly late (Wednesday) night movie dates with my movie buddy, a different lunch date for each day of the week, three evenings a week that I was in some sort of meeting, attended every school function for both kids, every band event, every soccer game, every soccer tournament, made sure I made regular visits to mom, dad, and brother who live in Texas, Tennessee, and Florida, respectively.  I shopped for groceries early on Sunday mornings while everyone else slept, planned the meals, paid the bills, kept a ship shape super tight chore schedule of duties for each member of the family, and made sure to keep my husband happy 4 to 6 times a week.  So you get the point, I was tired.

I think my next real symptom was depression. Or maybe it was aches and pains? Or maybe my aches and pains made me depressed? Regardless of the order, I had them all. But not all at once, so it wasn't obvious. I had annual doctor visits for female things and general health things, and never was there ever a test that came back with warnings or an indicator that I wasn't in perfect health. I was not diagnosed as depressed until recently, but looking back, I'm positive that I was depressed and probably suffered from chronic depression since childhood...but that's a different blog.

Somewhere along the way, I gained weight. A lot of weight. I've never been one to really watch my weight, but suddenly, I was no longer considered a healthy weight for my petite (that means short) frame. After children and through college (in that order) I pretty much was a consistent weight. Even through my first few years of working a 'real' job, I maintained that consistent weight, the middle or slightly less than middle point of my healthy weight range. Short people don't have as wide a range as tall people...but that's a different blog too.

So maybe my aches and pains came with the weight gain?

Stress. Yep! I had stress! So maybe my exhaustion, depression, weight gain, and aches and pains were just physical manifestations of my ultra high stress levels?

Ultimately, it all came to a head, Christmas of 2011.

I drove myself to my doctor's office the morning after I wanted to kill my husband. And I don't mean figuratively, I had real thoughts of killing my husband. I feared that I may hurt him. What I didn't want to admit was that I couldn't do all the things I thought I could. I couldn't live up to my own expectations. The lazy, messed up person I was on the inside was showing and others would soon be able to see her too.

I'll go into details in later blogs about my journey to a diagnosis, but for now, let's fast forward.

Today, I am trying to figure out the new me. I'm attempting to be content with what I can do, and accept that there are things that I can't do. Maybe, just for now, maybe forever. It all depends on my treatment and the lifestyle changes I commit to and succeed in. My plan is to be brutally honest with myself and let that person be the one I show the world. My plan is to have more good days than bad days. My plan is to have a long, happy life with my husband and children as they form and nurture their own future families. My plan is to surround myself with positive people and positive energy, and positive thoughts. My plan is to include you in my transformation.

Thank you for listening to RA and me Froggy Mom meets RA.

[Originally published April 2013.]

Stress

Stress kills people!

And it aggravates RA.

Had lots of family stress and drama lately and literally watched my good days morph into a series of bad days.

My husband has been in the hospital this week to remove a cancerous tumor in his chest.

Boy is that a stress trigger!

I've been driving to the next town daily, trying to visit as much as I can and this not getting enough rest thing is no fun!

And because life doesn't stop, this is on top of getting daughter situated and back to school, getting son signed up and into the Army. (Not to mention that we had a little event called Thanksgiving last week).

Anywho, my advice to anyone struggling with RA, take your meds, and get your rest!  It's the only way to even remotely attempt to cope with stress.

I find that when I'm most stressed is when I'm more likely to forget to take my meds.  It's also when I'm least likely to take much needed breaks/naps throughout the day...

As my body swells up bit by bit, part by part, my pain increases, my tolerance goes down and my mind gets fuzzy.  Not cool when you are the one that has to be strong.

Rest + Meds = Fighting chance!

[orginally posted: december 2013]

Carpel Tunnel? Say whaaat?

This past Thursday was an infusion day for me.  I went in feeling confident, feeling like I knew what I was doing and what to expect.  After all, it was my fourth one.  

The infusion specialist is wonderful.  She exudes confidence and professionalism in her every movement, every step.  She was super behind, patients were stacked up, and yet she took her time with each of us, never losing her touch.  She still took the time to ask me how I was feeling, if I thought treatments were helping, like she always asks, then pays attention to my answers.  Based on the pain I told her I was feeling in my hands, she thought maybe we could increase my Remicade dose since it was my fourth treatment and I still was at the same starting dosage.  The doctor agreed and told me we would talk more in his office when I was done with my infusion.  

When I told him that I was feeling pretty good with the exception of my hands, he had me go into more detail about what I was feeling.  I explained to him that there were really two things going on, one was joint pain, the other was different.  Over the last six weeks, the numbness, tingling, needles, and shooting electrical pulsing sensations were not only increasing but also intensifying.  I was losing my grip, dropping things, and my hands would fall asleep as soon as I lie down in bed.  He pretty quickly said, "well that's just your carpel tunnel",  infusions won't help that.  

I gotta say, I was pretty caught off guard.  What do you mean, carpel tunnel, I thought I had rheumatoid arthritis and fibromyalgia?  I was never told I had carpel tunnel syndrome.  I immediately felt like I was in the dark all over again.  I felt like I needed a list in writing right then at that moment of all my diagnoses, ALL the things that I was diagnosed with.  Honestly, on my first visit to his office, he told me I had inflammatory arthritis, I didn't know that was the same as RA.  I had to have him clarify. (More details of that visit in another post).  So again, on Thursday, I had him repeat what he said.  He said, yes, you have carpel tunnel syndrome.  Like it was everyday news and that somehow, I should have known this tidbit of my medical history.

I would have thought that if he knew I had carpel tunnel syndrome, we would have discussed it at some point, treatment, information, something.  I left the visit feeling like I had taken a step backward and wasn't sure why I was feeling so stunned.

It's almost a week later and it's still on my mind.  In general, I really like this doctor, he seems to understand what I need.  So why do I feel like I'm not getting enough information?  Or maybe I feel like he isn't including me in my treatment?  Which is weird that I feel that.  I want to talk to him, but I don't know what to say or what to ask without sounding accusatory or confrontational. 

My head wants to believe that I'm  overreacting, but my heart tells me that I need more.  More what? I just don't know.

[originally posted: circa Fall 2013]

Wow, where has the time gone?

I looked at the date of my last post and it seems like a lifetime ago.  So much has happened.  My son has graduated high school!!  Yay!!  Both kiddos made it through public education!!  I have cut off ties to people who are negative or bring me down.  You know, the people who take more than they give.  I have also quit my job!!  Incredible!!!!! 

I've also done A LOT of reading about RA.  All the experts (those living with this diagnosis) agree that stress is a major factor in how RA will affect your daily quality of life.

My mission to eliminate or minimize stress in every area of my life possible has been only quasi successful.  It seems that as I take away one stress, another replaces it.  I do things that I think will help me alleviate stress and it ends up making me more stressed.   I'm still trying to figure this all out and it reminds me of a puzzle I have hanging in my kitchen!!!  My daughter once gave me a puzzle for Christmas.  It had NO border, 5 extra pieces, repeating patterns, limited colors and it took 3 years to finish!!!  I mounted it, framed it, and hung it!!  All to remind me that she was right, I do love puzzles and I do love challenges, and my co-worker was right too, I am tenacious!!!  

I don't give up!!!  The new me is still the old me only a little slower, a little more ready to ask for and accept help, and more determined than ever to be here for my beautiful family!  

Thank you, KC for having faith in my ability to solve that puzzle!!

[orginally posted circa July 2013]

The darkest part of my journey...

My first outreach for help came with my overwhelming urge to hurt myself or my husband.  I had anger as soon as I opened my eyes every morning, throughout the day, and until the very moment that I went to sleep at night.  I lived with the kind of anger that made my face hot and my head throb.  I never understood what people meant by the term 'seeing red', until then.  My husband and I had disagreed earlier that evening and we went to bed angry with each other.  I was restless, not getting any sleep because my entire body hurt.   I woke up in the middle of the night and looked at my sleeping husband and wanted him to disappear.  I hurt and I believed the problems we were having was causing my anger, and my anger was causing my pain, and I didn't want to hurt anymore, and I didn't want to be angry anymore.  Somehow I began visualizing how to kill him.  Smother him? Strangle him? Bludgeon him? Burn him?

I can't describe my visions as 'plans' but I couldn't get the visions out of my head.  They felt so real that I got scared that I was doing something in person, for real, almost like one of those dreams that you can't wake up from.  I was completely overcome with fear.  I grabbed my keys and got in my car and left my house.  I drove around for hours.  I cried. I screamed. I thought I was going crazy.  I decided that I needed to be kept away from my home so that I wouldn't hurt my husband.  I drove to the emergency room at my local hospital and sat in the parking lot.  I was afraid to go in.  I was afraid to go home.  I was afraid to do nothing.  I was afraid that I lost my mind.  I cried myself to sleep in the car.

The next morning, I drove myself to my doctor's office and, over the phone in the parking lot, asked to be seen by the next available doctor, physician's assistant, nurse practitioner, I didn't care.  Truthfully, I'm not sure how the receptionist was even able to decipher my words.  I was crying so deeply that I was really sobbing more than talking over the phone.  She must have heard the panic and desperation in my voice and knew I needed to see someone immediately. The nurse practitioner asked me what was wrong. I told her the story of the night before, my fear that I was crazy and how I couldn't stop the anger and couldn't stop the tears. She gave me a depression survey verbally and before I knew it, I had every single warning sign of depression.

By the end of the visit, she had reassured me that I was not crazy and that things would get better. Diagnosis: empty nest syndrome combined with marital discord was causing severe depression. Treatment: celexa (mood stabilizer) and walk everyday.

I felt like I had hope again. Unfortunately, it was only the beginning of a long list of symptoms that had a much more serious underlying culprit.

Today, I understand that my real anger was toward my body. My body was being betrayed by its own defense mechanism and I apparently was displacing that anger in a safe place. I was blaming my husband for my sadness. How completely wrong I was. Sure we were going through a rough patch, but truly, he would never hurt me and I knew it. So my hypothesis is that I was using him as an outlet for my pain and anger knowing that he wouldn't retaliate. He would love me regardless.

Eventually the medication stabilized my moods and I was able to see my life clearer and counseling helped me see that my husband wasn't to blame for how I felt.

But at this point, I didn't understand why my body still hurt...my follow-ups with my actual doctor focused on my depression. The exhaustion, aches and pains were dismissed as lack of sleep and my inability to cope with and deal with stress. Basically I was lectured for not increasing my exercise and not eating better.

So I decided to ask someone else's opinion.

Wait until you hear what she said!

[Originally published; April 12, 2013]