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The Positive Aspects of Chronic Illness… with a side of Poetry

The Positive Aspects of Chronic Illness… with a side of Poetry

Friendship, support, laughter, tears, empathy, encouragement, pumped-up, sometimes chided, love, celebrating, stories, mental hugs, strength, me too!s, vent sessions, pre-approved pity parties. This list could go on and on and you know what? I should make a complete list, as if it could ever be complete, a list of everything that I have gained in my life since I ‘lost’ my health.

I’ve had a few people ask me what, if any, good things have I gotten out of this whole chronic-life experience and I don’t even have to dig around to find one. The people. The women and men that I’ve met since 2006 are amazing. Amazing! The most understanding, giving people I’ve ever had the pleasure to have known. Somewhere in the mix I have become a better person myself. I wasn’t so bad to begin with (tooting own horn here) but I really feel that I have become a better person by going through this whole process.

Tolerance. I have so many friends now who are different than me.  We tend to gravitate to people who are ‘like’ us. People that we meet in our lives, say through work or friends, we make friends with the ones who are most like us. Politics, religion, city or country, rock or soul, baseball or football, coke or pepsi. It’s just the way it is. That seems kind of silly right? But it really is how we find our mates in life and the people that we trust the most.  When you have a large group of people with the one thing in common that is so extreme; disease and suffering, all of those other factors just drop off. We get to learn about people who are different than ourselves. I’ve learned that I STILL love some people after having to endure the political onslaught that rolled down my newfeed pre-election. HAHAHA oh my. You know who you are 🙂 Just using politics as an example, in the ‘real world’ i.e. pre-sickness, I probably wouldn’t sit down with someone with a zest for politics at the cafeteria at work because, hey, I would have to smile and nod while thinking ‘are you kidding me?’ And you can’t really start a friendship when you don’t have that common interest. Here’s where it gets good. When disease is the common interest, we learn to support, empathize, and build each other up for those really hard times. All of the other stuff falls off to the side and we get to know someone we might not have otherwise. Bonus! How lucky are we??? And what a way to be able to see people as a whole. Tolerance. It’s a good thing!

Third: understanding people better. I think that because of our loss, we gain a better understanding of all people. Our families that have to put up with a non-stop barrage of doctors visits, stuck in the bed times, seeing us at our base; worst and broken, fearing for our lives when we are in the hospital fighting for them. When you first get sick you think it’s all about you. Soon you realize it is far reaching and affects everyone who loves you. I can forgive myself now for being sick as it’s not a punishment. I can forgive my people who at times have been cruel though only through ignorance, and that went away pretty quickly as everyone wanted to learn all about the disease and what they couldn’t grasp on paper they got to witness first hand with someone they love. Love is the word that keeps popping up and man am I loved. And I love so strongly now, how could there have ever been another way??

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OK, I want to share with you someone I met the other day. She has RA (rheumatoid arthritis) and writes the most awesome poems about her experiences. I sent her a message and asked if I could share one here and she said, yes! She is a very cool woman who I’ve no doubt that we will know each other for quite a while. You can just tell when you talk to someone that you will be friends, but instead of shrieking that out like the child that you are (meeeeee) you play it cool and use your big person voice and whatever social skills you have learned thus far. 🙂 Don’t be afraid Donna, I’m not a creeper or a stalker. he he he he

Here’s a poem that I loved, and felt it. And am going to share it with you.

Giggles Over Tears With RA

 

Sometimes I just want to turn RA off for a while,
One little switch could make me smile.
There are other things I need to do,
And other people who need me too.
I’d produce these switches and give them away,
To anyone suffering in any way.
Just turn off all pain and flip happiness on.
It’s my perfect invention that can’t go wrong.

Check out her page on Facebook

just click the link below

Giggles over Tears with RA

 

Today Is World Arthritis Day, Let’s See Your Wave!

Today Is World Arthritis Day, Let’s See Your Wave!

Hey all, today is World Arthritis Day. A day of awareness for people with rheumatic disease. There are more than 200 rheumatic and musculoskeletal diseases (RMD’s). This year’s theme is ‘Move to Improve’. 

You can click on the pic above and also the globe in the sidebar and be taken to the World Arthritis Day website. There you can find out more about today, get resources for yourself or to educate your loved ones, and have an opportunity to wave for WAD!  You can submit your picture of you waving for World Arthritis Day. The photos are being put into a montage and the goal this year is 100,000 pictures. Countries are competing to see who has the most waves. =) You can see the tallies at the website.

I think this is a fun idea and we’ll be ‘waving’ here and sending ours in. I’ll be sure to post it here when we do. They’re accepting photos until October 31st, so it’s not too late to be involved.  Anyone can wave; you don’t have to have a disease, you can wave to support your friend or family member.

Waving is a small physical activity, but a big gesture for people with rheumatic disease.  It also ties in with this year’s theme which is movement, and we all know this is SO important. Now that doesn’t mean running a marathon, unless you can and um, like to run…That’s just something I never did enjoy even when my muscles were my own. But light exercise is very important to keep your muscles from atrophying.

My mantra is ‘baby steps, baby steps’. There was a time when I couldn’t walk more than a few feet, and even then had to rely on a walker. The couple of years of me being immobile really did a number on my muscles. My disease is a muscle-wasting disease to begin with, so I really need to stay as active as I can. Something I have not been so successful with lately btw, but that’s the good thing about a new day. A day to try again.

Stop in at the website. Click the counter to ‘wave’ in spirit. Let me know in the comments if you did, I’d love to see them!

Until next time,

 

 

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

Buffalo Humps and Muffin Tops, Welcome to the World Of Prednisone!

This video is by Lisa Copen, founder of Rest Ministries; a Christian non-profit for the chronically ill.  Rest Ministries puts out Hopekeepers Magazine as well as hosting a social networking site called Restministries and Hopekeepers Sunroom.  I’m a big fan of Lisa, who started this all up on her own while battling crippling RA.  If you check out the site you’ll find a bookstore that has some really good books on chronic illness, invisible illness, and more. She’s definitely one of my inspirations, one of my heros!

OK, here’s my disclaimer.  This is not a paid advertisement for any of the above. This post is my opinion, from my perspective.  With that said, here ya go.

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Until next time

Depressed and optimistic, is that possible?

Depressed and optimistic, is that possible?

 

I have dropped off the radar again.  Not intentionally;  the days just seem to meld into one long day, and I’ve been so sick, time is getting away from me.  I haven’t talked to my best friend in at least a month.  Again, not intentionally.  I’ve written so many ‘I’m sorry’ emails in the past, I just don’t know what to say anymore.  I feel extrememly guilty about isolating, but at the same time, I can’t seem to stop.  I had a horrible realization a few days ago, and it was-I make it through each day and try and get well enough to make it to my next doctor visit.  I actually missed my last one.  I couldn’t get out of bed so C went and picked up my prescriptions.  This is no way to live, I feel powerless to change it.

Between non-stop flaring and being a momma, I have no time for anything anymore.  Facebook, my Christian groups, Flickr, television, nada.  For those who aren’t computer-heads it’s not much of a big deal, but the computer has become part of my life since becoming ill.  It’s my ticket out into civilization, lol.

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Optimistic and Reconnecting

Optimistic and Reconnecting

the city2

I can honestly say these last few months have been pure torture. Pain, sickness, stress and depression. No exaggeration there.  And yet, I feel optimistic.  Why?  Because God is with me, and the rheumatologist at the teaching hospital ROCKS!!!  I asked him if he’d be mine, and he said yes!  My new rheumy I mean.  Big C approves 🙂  I’ve never had such instant access to a doc before.  In my experience, you call the office and they have a system of blockers.  The front desk, then the assistant.  You don’t get to speak to the doc him/or herself unless you make an appointment.  I might get some flack for that, but I was an assistant and we were taught that in school.  It is your job to keep the patients away from the doc so he can get through his day.  And I mean patients calling in, not the ones in the office, lol.  Docs are busy and they always have a full schedule.  So medical assistants are crazy-busy and work especially hard.  Next time you go to the docs, let them know you appreciate them. They do all the behind the scenes work that no one sees.  Stepping down from the soapbox.  Anyway-the hospital has an e-chart system.  I always said I would never want my medical info online and now I love e-chart.  You can see all of your test results as soon as they come in, you can email your doc with any questions, and mine gets back to me THE SAME DAY!  Wee hoooo!  OK, it’s been a while since I’ve been here so I need to get my thoughts together and pick up where I left off.

New Doc told us to email him as soon as my rash came back.  On our previous visit, I brought pictures of my hand rash, knuckle-red-scaly-yuck, chest rash and my legs when they turn all pink/red.  He already told us that it’s really hard to diagnose retroactively.  After seeing the pics you could see the wheels turning.  He told us that there are two paths to take with treatment; IVIG therapy if it’s dermatomyositis or ‘the next step’ if it’s RA, Still’s.  He said since I’ve already tried and failed with methotrexate and Imuran, it’s the next step.  I didn’t ask which med for the RA, I was overwhelmed with his efficiency.  I found out that when my muscle symptoms and rashes first started I could have had a muscle biopsy to find myositis.  Now, he says, I have plaquenil and prednisone in me for 3 years it would mask the results.  So I’m scheduled for an MRI of my femur.  That should show disease.  I’ve gotten set up with an ophthalmologist because of the double vision that I have.  Turns out the yearly and baseline eye exams that I read about when I started plaquenil really ARE needed.  My (old) rheumy said I didn’t need them, that the percentage of eye issues was so low. sigh.  So I’m getting checked for toxicity in my eyeballs.  I’ve got an appt. with the Derm to biopsy my rash, a bone density scan, and a neuro appt to rule out Myasthenia Gravis.  I’ve only lost my legs a couple of times and fallen down the stairs but he wants to rule it out.  I feel like I struck gold in the healthcare hills.  Bout time and I deserve it!

The hospital has a tram that takes patients from the top of the hill to the bottom.  And vice-versa.  It reminds me of the ride at Great America that takes you from one end of the park to the other.  Boring, but you take it anyway.  It was a beautiful day so I asked C to pull off at the vista spot so I could get some shots of it.  So we got out and I started snapping away with my soon-to-be-broken camera. yes, broken. and this was my point and shoot.  my Nikon D60 is laying in it’s bag, broken too…

weeeeeee
weeeeeee

I noticed when I was resizing this that there is a person on board and it looks like he/she is looking at me.  It looks kind of ghostly actually, spoooooookyyyyyy.


through the treees

This next shot is one of the tram but with many, many trees in the way.  Even though it goes along that wire pretty slow, I was panicked that I wouldn’t get a shot. So I kept my eye on the viewfinder while screaming over to C “where’s it at? Is it coming yet? Argghh, all I can see are trees!!!”  Good times.

Everything in our backyard is either blooming, budding or just screaming to be photographed.  It’s been driving me nuts so I’ve channeled that creative energy into editing my old photos.  I have a couple thousand on this computer but it only goes back a few years.  I have every great pic of my kids when they were younger sitting in a dead desktop comp on my closet floor.  But-I was visiting my dad a few days back and in his iPhoto are shots from the 90’s!!!  I almost started screaming, my kids! my kids!  Instead I said in a high-pitched squeal ‘Can I burn all of these on to disk?!?!’  He didn’t have his hearing aids in and I startled him, lol.

Alright, my eyes are blurring.  I’m on the 3rd day of a migraine.  This is a first for me.  I’ve had a weird head pain that lasted for months, but this is a true blue migraine.  I’m sitting here typing in my J-Lo pink glasses…Yah, I think it’s time to buy a new pair.  I’m coming back tomorrow.  I need to keep writing or I’m just going to isolate again, and I just can’t have that.

Until next time,

2michelle


Hope

Hope

My Angel!
My Angel!

I finally made it to see the rheumatologist at the hospital. I had to cancel my appointment a couple of weeks ago because my dad showed up at my door in a state of dementia.  I didn’t give them the reason why I had to reschedule, and they set the appointment out a few months.  I was so upset. The next day they called with an opening for the following week.  It’s unheard of there so I figure God was listening.

It wasn’t easy getting ready to go.  For the past month, maybe even two, I have been mostly horizontal.  My body is failing me in so many ways it’s hard for me to even talk about it.  I laid in bed until the last possible moment time-wise and then climbed the stairs to get in the shower.  I hate to say this or even type it but showering is near impossible for me.  I have to use a step stool to sit on, ugh, I won’t even go there.  So my and C finally get into the car and we are almost on time for the hour and fifteen minute ride.  I’m out of breath, sweating like crazy (it was about 40 degrees) and shaking.  All I wanted to do was go get back in bed and close my eyes and pray.

Minutes after meeting the doc I was hopeful.  He LISTENED to me, very important in trying to diagnose.  He asked so many relevant questions.  I felt like I was being heard for the first time in a long time.  He talked to us about the tests he was going to do and wants to see me back in 4 weeks.  I was a little surprised as I thought it was a one shot deal.  I want him as my rheumatologist and am going to ask when we go back.

Since my appointment was the last of the day, their labs and x-ray were closing down.  He actually ran to his office to put the orders in and walked us to the lab.  I have never ever seen a doc go out of his way like that.  I actually cried.  What a doofus, I know.  It felt good to have some hope.  I need answers just as much as I need some relief.

Have you ever had a doc go above and beyond?  If so, is this the norm for your specialists?

Until next time

2michelle

The Power of 10

The Power of 10

I am bed-bound at the moment and pretty darn low.  I have written and revised and rehashed a post until is was about 2 sentences long to cut out all of my whining and/or negativity as my body is really kicking the crap out of me.  I’m just going to post this awesome video about Erica.

The Arthritis Foundation has a campaign called the Power of 10.  You watch the video, forward it to 10 people, and give a gift of 10 dollars.  Let’s spread the word.  Just click on the Power of 10 link and check it out.  What a really great simple way we can all make a difference.  God Bless.

Thanks for hanging in there with me,

2michelle

Docs playin peek-a-boo with diagnoses

Docs playin peek-a-boo with diagnoses

I have some good news-(drumroll please) I finally got Medicare ( woo hoo!!!!)!!!  I went 3 years with no insurance after I lost my job.  The amount of money I owe for medical bills is astronomical.  I think I can safely say that my credit isn’t credible anymore. No one will be giving me any loans in this lifetime, ha!  Good thing I have The Big C.  I told him if he tries to leave me I’m grabbing on to his ankles and he’ll have to try and run with me holding on.

Anyway, back to the Medicare.  My primary care doc has given me a referral to be seen at the big state teaching hospital.  Yeeeee hoooooooo!!!!!  I finally have some kind of coverage that gets me in the door.  I am so happy.  For the past 3 1/2  years I’ve had doctors scratching their collective academic heads and going hmmm.  Then I get a diagnosis, and I get it taken away.  Peek-a-boo! It’s here and then it’s gone…  The only one that hasn’t been taken away is the small fiber neuropathy.  That’s because I had a biopsy and they could actually see it and diagnose it.  It sucks that so many autoimmune diseases don’t have one clear test.  It’s more of a symptom game and then you have to have a rheumatologist who’s willing to put their neck out and actually diagnose you before the average 6 to 11 year time-frame.  As soon as I told my rheumy that I was going to be seen at the teaching hospital, he backpedaled on the Still’s and dermatomyositis.  Even though I have the rashes and skin issues that go hand in hand with each and solid bloodwork.  I just can’t wait to be seen at this hospital, I’ve been too sick for too long.  I’m going to be seen in the rheumatology clinic but was assured that they would take a team approach on me and try and figure out what’s causing my Cushing’s and chronic edema before I explode.  It wouldn’t be pretty that’s for sure.  I am flaring with my RA right now ( I mean UCTD again) so I’m in a lot of pain in all of my joints and it makes it worse from my hips down because of all of the water pushing the bones in my feet apart and the pressure in my knees.  As me and C would say, Oy! My pancreas! It’s what we say when we realize that either one of us is going on and on and on about body parts.  It means, shut up, you sound like one of those  people that like to tell you all about all of their aches and pains when you say hello.  If you could feel your pancreas hurting, your pretty much hurting everywhere.

Change of subject: Here’s kind of a happy thing, for me anyway-  I finally got Photoshop elements 8!!!!  I am a digi scrappin fool I tell ya!!! I also got a few new kits from a wonderful designer and friend.  And, I bought My Memories Suite. Yeah!!!  That’s where I’ve been spending my free time lately.  I am hooked. I could spend days just cruisin the online shops for kits, actions, or just elements.  But-I don’t have much free time, or not as much as I would like that is.

The other day I was searching for the video camera.  Our house is a little ‘cluttered’ now that I’m on a break from housework, ha!  I was going through stacks of stuff in the corners of our family room and I found my bag of knitting.  I just stared at it and was like, oh wow.  When is the last time I’ve seen that bag and how did I ever have the time to knit??  I remember sitting on the loveseat upstairs at night and going through new patterns.  What life was this in?  I swear there aren’t enough hours in the day now.  And I’m home all day so I don’t get it.  It seems like I had more time when I was working full-time, but how can that be?  Maybe it’s like money.  The more you make the more you spend.  The more time you have the more you need.  I don’t know but I felt a little sad just thinking about it.

I’m off to check on some websites and figure out which ones I’m going to drop.  I have way too many social media sites and I’m thoroughly addicted to those too so this is going to be hard.  I know for sure I’m keeping my Christian women sites, all of my photography sites, and facebook.  The rest is going to be hard to choose.  I’m leaving you with a few shots from this time last year.  Right now we are having a cold spell (12 degrees at night brrr) and at this time last year we had this freak snow-then-ice storm that left us without power, freezing, and me taking a million shots of the ice.  Enjoy and until next time

2michelle

Reaching
Reaching
Ice on Top
Ice on Top
Stuck in the Middle
Stuck in the Middle

no copy or use of photos allowed without express written consent from genius, uh I mean blog author  🙂

The Arthritis Foundation, “Inspiring Others”

The Arthritis Foundation, “Inspiring Others”

This video asks to forward on to friends and family and this is the fastest and easiest way to do it!

I heart the Arthritis Foundation!

I’ve been gone for a few months.  I’ll go into that in another post, loooong story.  I would like to apologize to all the readers who left a comment in my absence.  I have comments set on moderation so they won’t show up until I see them and unfortunately I didn’t get them up until tonight.  Thank you for reading my blog, and thank you for your comments.  I will respond to them tonorrow, my eyes are closing. (wimp here)  Thanks again everyone for hanging in there with me.  And don’t forget to forward the video!!

Until next time

2miichelle

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