Friday, December 21, 2012

Brain fog lack of sleep a typical day in my life

Last night I think I managed to sleep 2 hours. Our poor dog was up most of the night again.
Now of course he has been asleep most of the day and I can't sleep!

I think he has masterminded some kind of plan, as soon as we are up. He goes to sleep. 
The minute we go to bed though, he decides, it's time for him to want out all night or to pace the house.

I'm only half kidding! He really is a smart dog who could probably outwit some of the people I know.

Anyway, back on topic I meant to post this earlier this week, for the blog carnival on the Rheumatoid Arthritis Warrior site. 

Check out all of the other posts and blogs on there, I plan on reading them all.

Here is my favorite non medical device, that helps me in my everyday life.
 I found it by watching an episode of Mike and Molly one night. That is one of my favorite comedies. Molly was using it in her bed for her laptop. So, I had to figure out what it was. (Laughter is another great non medical way to forget about your pain for a while)

Here it is, the brookstone lap desk, I can use it on the couch or in bed.  I'm sure there are other brands that make one but this is the one I found. 
I'm not the best photographer but hopefully you can see the top well enough. The bottom is cushioned like a pillow so it sits comfortably on your lap. 

I don't know about you, but sitting up for long periods of time with a laptop gets to be tiring with this you can move anywhere and lay back and relax. 

Wednesday, December 19, 2012


Usually at this time of year I'm running around like the proverbial chicken with her head cut off.
This year however is different. Every year at this time I get stressed out, some of it I have to admit is self induced. I know that I put more pressure on myself than anyone else.

I haven't been given a choice this time, the new medication I'm on has found me at a level of exhaustion I didn't know there was after over 20 years of living with chronic illness.
To go from a permanent state of insomnia, to passing out  and waking up several hours later is a strange feeling and I can't remember the last time I had been in a deep enough sleep that I had remembered having a dream… Well maybe after sedation from surgery.

One thing I have learned after so many years, is I have had to figure out what my priorities are, if I am going to go out shopping I probably shouldn't do some heavy cleaning and wear myself out.

I have also learned that I would rather use what little energy I do have I'd rather use it spending time with and doing things with people that matter to me.

So this year I bought cookies because my hands were too sore, ordered everything online that I could instead of wandering around the stores for hours on end and simplified the decorating as much as possible.

Sometimes I feel guilty, not because my husband makes me feel guilty but because I feel like I should do more. Then it passes, I remember something a doctor told me years ago, he said you shouldn't feel guilty you didn't do anything to cause this disease, he said are you a criminal did you commit a crime? I said no, he said then you have nothing to feel guilty for, all you did was get an illness that you had no control over.  Each time I start to feel guilty I remember those words.

The emotion of losing my mom two months ago  is weighing on me this year as well. I'm not sure it has even really hit me yet. I always call her on  Christmas day. My family lives far from me, so that call has always been important to us.

I've kind of been going through the motions, the tree is up, my husband put up the lights, the presents are wrapped. Everything is ready. It's just waiting for the day now.

I don't want to seem all doom and gloom I'm not. I'm thankful I will have my husband home on Christmas eve this year, my son and his wonderful girlfriend and my grandchildren will be here that day as well.

There is no way you can't be happy with three little boys running around the house, I just wish I could bottle up half the energy they have and use it myself.

Lastly, I hope all of you have a holiday full of love and are with understanding caring people. My Christmas wish is that we all are pain free and find the level of support for this disease that is sorely missing.

Tuesday, December 18, 2012


A word that over the years has brought on anxiety whenever I think of it.

I can't remember how many of them I have seen over the years. Either due to moves or due to the fact they were ....  I'm trying to find the words to put this nicely. 

Lets just say they were rude, did not listen, did not examine me and really needed an education in empathy.

This past week I read an article circulating the web on a Rheumatologist, who I will not name. I feel he has had enough publicity already.

I was appalled, sickened, but most of all saddened for the patient he was talking about and the rest of the patients unfortunate enough to be under his care. 

He spoke about charging this patient more because it was a lengthy appointment.  He accused the patient of "whining"

I can't imagine anyone who lives with the fatigue and pain of this disease, on a daily basis. Walking into a doctors office anywhere. Saying everything is rainbows and sunshine.
I imagine we would all be whiners to this doctor.

This month, I finally made an appointment to see the new Rheumatologist in our area. Previous to that I had travelled four and a half hours to see one. Since the surgery on my leg, I haven't been comfortable to travel that distance so I have not seen one.

I had anxiety and it took me two months of thinking about it, and talking to my family doctor, about him to make the appointment.

I got in two days later, I was shocked. I thought it would take several weeks to get in.

I couldn't sleep the night before and was nervous all the way to the appointment.  We had been to the clinic before. I had seen a rheumatologist there before. It wasn't a pleasant experience. That doctor is no longer there.

The staff there were pleasant. I waited about five minutes before the nurse took me back, she was very nice also.

She left the room, and I sat there anxious waiting for the doctor to come in.

He entered the room, smiling and shook my hand gently. He said he doesn't shake hands firmly he knows it hurts. That put me at ease. 

He started to ask me some questions and noticed I kept looking at notes. I had brought along notes from previous doctors visits in the event he might look at them.

He happily took them, looked over them, said these are great! Then he began to examine me.

He looked at my hands. I said too bad this wasn't yesterday they were hot and swollen. He said don't worry about that I don't go by that.

We went over everything I have been on, and decided to try something different to see if it helps. 

He ordered blood work, and I see him again in two months unless something comes up.

I left feeling optimistic. I haven't felt that in a while after a Rheumatology appointment and that's a sad fact for a lot of patients.

It shouldn't be that way and something somewhere needs to change.

Wednesday, December 12, 2012


I don't remember a time in my life that there wasn't music playing. Growing up my dad played pretty much every instrument he could get his hands on.

My mom would have classical music blaring in the house. Of course she did this to drive me and my sister out of the house. It worked!

During my teen years, I loved eighties music, the hair bands, Bon Jovi, Def Leppard. 

Since the onset of RA, music has become an even bigger part of my life. Thank goodness for iPods. I still love to listen to eighties music, but I also appreciate some of that classical music.

One of my favorite groups in the last couple of years is Il Divo. 
Josh Groban is another.
I find that music soothes me, it cheers me up when I'm down, it can give me an instant burst of energy and it's always there with one flick of a button.

What are some of your favorite bands, songs?

At a later date, I will be adding a post about some of my favorite books and movies.
I love to read, I think that along with possibly an ipod I was born with a book in my hand! 

If you have any suggestions on books or movies, I'd love to hear those too.

Tuesday, December 11, 2012

Is today the day?

Should I share my blog? I ask my husband to read my posts on a daily basis. He thinks I should share it with family, and everyone else for that matter. Each day, I think about posting the link on my twitter account, then I chicken out. 

 My twitter account, I have one post on there, I use it to read everyone elses posts. I get comfort from that. It makes me feel less alone. That and I don't really know what to say!

Anyway, back to this blog. I worry about the punctuation, the grammar, worry it's not good enough. 
You see, I just type out all of my thoughts, they come out jumbled sometimes and I don't stop to think about the rest of it.

 It's part of the foggy part of this disease I have. I'm not trying to win a Pulitzer prize here. I just want people to know what I and others like me are going through on a daily basis with this disease.

Maybe today will be the day, I have to muster up the energy to go christmas shopping right now, and will decide after that.

Monday, December 10, 2012

Stubborn, Proud, Independent?

All of those words have been used to describe me, my husband and my son have both been using them to describe me. In my opinion way too much recently.

I have always said my stubborn ways, have kept me fighting through every day of pain, fatigue. Every surgery, all of the sleepless nights. All of the times I have forgotten even the simplest of things, like going to the fridge and forgetting what I went there to get.

The days you feel alone, the days people look at you like you have two heads when you describe your illness. Like "they don't get it" because they probably don't. That's if they even bother to take the time to listen.

I believe being stubborn and independent has helped me through the worst of days. I have also come to believe it can be a bad thing at times.
I'm not one to ask for help, I have a handicap tag, I know it's there for me to use. I have foot drop from nerve damage after my knee replacement in 2010. That's another story for another day. 

Anyway, I can walk so I feel guilty using it, why? I don't know. My age maybe. I know I have the right to use it. I could use the motorized scooters in the stores, but I would rather exhaust myself than have people look at me. I don't know why, I wish I did. 

I think because I have fought so hard against this disease. I don't want to do anything that will seem like I am giving in to it, like I am giving up.

My hands are getting bad, that is where it all started 25 years ago.  I have started to look for something to help me with typing on my computer, so maybe that is giving in a little bit.

This past month I have allowed someone to come and help me with my housecleaning, a couple of times a month. I still do all the basic cleaning. I just can't do the heavy duty cleaning. I'm starting to realize that the energy I'm using on things like that. I could be using on enjoying 
time with my family, since my energy is limited as it is. 

Maybe there's hope for me yet!

Cold hands, warm heart.

If that saying is true, I must be the warmest hearted human being in Minnesota today.  
We had our first real snowstorm of the season.  Along with it strong winds and wind chills. 

For me this means a bout with the dreaded Raynauds. Most of the year I hardly even remember the word Raynauds, much less suffer the effects of it.

As I sit here typing this today I'm wearing my gloves indoors, picturing tropical beaches, and drinking hot chocolate.

My Rheumatologist, offered me medication on my last visit, but with the amount of medication I already take. I think I' d rather just tough it out for a few months.

When I first got RA, I thought ok I can handle this. I read everything there was, went to support group meetings. 
Medication changes, okay I'll try that, therapy ok let's do it. Splints, ok no problem.
Raynauds? Sjogren's? These might be a problem.
I'll get to the Sjogren's at a later date. 

I was told all of these "syndromes, phenomenons" come along with having RA, it seems to be one adventure after another.

My doctor on my last visit looked though my fingernails, I had no idea what he was doing. He explained to me that with Raynauds over time the arteries under the nails change, and mine have.

It is not a life threatening disease, just uncomfortable, my hands, feet, and nose are always cold.  They don't know the cause of Raynaud's, other than the blood is not flowing to the hands, feet etc. like it should. Caffeine, stress and cold make it worse. 

At least unlike the Sjogrens and the RA at least with this, I know that in a few short months there is relief in sight!

Monday, December 3, 2012

Why Now?

I have toyed with the idea of creating a blog off and on for years now. When I asked my husband to read my first post, his comment was "I'm surprised it took you this long."

Growing up, I was always taught to be strong but silent. Not to make a big fuss or have a big fuss made.  That has stayed with me all of my life. I don't like a big fuss being made about me. I stay quiet when I'm hurting, usually the only one who really knows how I'm feeling is my husband. When anyone else asks me, I say " I'm fine" Even when the pain is so bad and I'm on the verge of tears. I stay quiet.

Recently my mom passed away and her passing has inspired me to do what I should have done years ago. Hiding in silence isn't going to educate the people around me about these diseases. I'm tired of watching the commercials with misinformation on t.v. and being around people who make ignorant comments. Whether it be intentional or not. It's time for me and people like me to be heard so maybe we can make a difference. It's time to find a solution to the problem. I choose to believe all of us together can make a difference.

Saturday, December 1, 2012

Arthritis, oh I have that too!

It took me a while to decide if I should name this page Rheumatoid Arthritis or not.
I'm one along with many others, who are hoping for a name change for this disease. Then people will hopefully begin to realize this is much more than "just arthritis".
For now this is the name, with the hope we get a new name and a new awareness of the fatigue, pain, the disease activity, the extreme medications we have to take, how our immune systems are compromised. 
 How each patient is different. How I feel like I have been run over by a tank some days, and other days feel like someone has beaten be repeatedly with a hammer and sliced me open. Sorry I got sidetracked there.

I will post more later about immune systems and the disease process. 

In the meantime, I added some links at the bottom of the page that have great information, and are great sources of support as well! 
Arthritis? No. you don't have the arthritis I have. You likely have osteoarthritis which affects the joints primarily. This is the one they call the old people's disease. The one you can "just take an aspirin" for. 

Even if you do have Rheumatoid Arthritis like me, yours is yours and mine is mine as we all progress differently and respond differently to treatment.

It is my hope we all get treated and recognized as individuals. If we can't find a cure yet, we should be able to find a way to better educate people and not feel so alone. My dream would be that this disease gets the recognition that is overdue and is deserved and will finally not be know as "just arthritis"

Friday, November 30, 2012

Just take an aspirin, you'll be fine!

It's funny how words stay with you. Those were the words spoken to me, by my family doctor back in 1988. I didn't go to the doctor often. In fact up until this point I had been pretty healthy.

That day I had gone to her for a sinus infection. Those were and still are a common occurrence for me. 

She examined me and she did some " routine blood work. "Nothing out of the ordinary. 

When I think back a little bit. Prior to this I had visited the E.R. My arm had been aching at work and I could barely lift it.

The doctor that night diagnosed me tendonitis.  He told me to ice it, take some anti inflammatory medication and rest when I could.

 I didn't connect these events at that time. I was too busy working long hours too get any rest.

Then several weeks later. I noticed the middle finger on my right hand was swollen. It had started to bend, but again I was busy with work, and being a mom, I was only 24 years old. I didn't have time to be sick

So back to the doctor's visit, she handed me the prescription for the sinus infection, then told me when we were heading out the door. Oh by the way you have Rheumatoid Arthritis. I said what do I do for that? I mean I had no idea at the time.
 I had only heard of "arthritis" you know, the kind old people get. I hope you can hear the sarcasm here.

She looked back told me "just take an aspirin, you'll be fine" and left.
At the time I wasn't panicked I thought okay if she isn't worried about it then I shouldn't be either. Boy was I wrong.

Within a week of seeing her, I was sent to a Rheumatologist by another general practitioner who could see I was in bad shape. He pretty much echoed her words. I was so weak and exhausted I ended up in a wheelchair. 

What began with a finger had now moved to my knees and wrists I was dealing with a pain I had never felt in my life. 

I couldn't sleep. I had lost my appetite. I was getting depressed.

I decided I could either give up, or go see someone else. So i was sent to a new Rheumatologist for a second opinion.

 This visit was completely different. I was examined. Blood work was ordered, he decided to put me in the hospital. 

He started me on a cortisone I.V. that day.

This  particular hospital also had also had a two week educational program about RA.

Each day was a different class. One day was a physical therapy class, the next occupational therapy. I was so tired I didn't want to go.

I remember one morning going down the hall on the way to the swimming class. The other rheumy who has basically told me it was nothing. The look of shock on his face at the condition I was in. He didn't say a word to me. 
After the prednisone, came every anti inflammatory you can name. I was started on plaquenil also. I couldn't tolerate any of the anti inflammatory medications.

Then came penicillamine, gold shots, methotrexate, methotrexate injections, I couldn't tolerate the methotrexate in either form. 

The other medications, didn't have any effect on my disease. 

I will be seeing a new Rheumatologist in December and I'm hoping for a positive experience and a medication that brings relief.

My life as I knew it changed that day. I was always an active on the go, full of energy person. I always had friends, loved to go dancing. 
As I sit here now both of my wrists have been surgically fused. They fused on there own from the RA at the beginning, then were surgically fused to take away the pain.

I had my right knee replaced in 2010.

This year they had to attempt to repair the nerve,  so i had surgery again. i have foot drop and tingling in my toes but at least i can walk.

I have also had cataract surgery, my optometrist believes it is due to past prednisone use.

I no longer live in the same area that I used to, and I'm also remarried. The people in my life
only know the person that I am now not the person that I was.

I find it very hard to meet new people. Especially when you're exhausted and in pain and most people don't understand, or don't even bother to find out what's going on with you.

I find when you are too sick to go somewhere, instead of people being understanding they stop inviting you.

It's bad enough to be in pain and tired all the time, but for people to make you feel guilty about it, I think is even worse.

The people in my life who knew me before my illness stayed with me after.

Most people in my life now don't even try. Not even a phone call to ask how I'm doing. I don't want pity. I just want to be treated like a human being.