Seeing Red

I'm going to admit up front that this is not a happy or fun post.  I am angry.  Angry at my disease, angry at my body, angry at myself.

It's been a couple of weeks since I've started a more healthy and natural approach to treating my RA.  It hasn't been helping.  I know I need to give it more time to see if things improve, but with the holidays it's been rough.  I have been in pain every day and I'm so tired, fed up, depressed, and yes angry.  I hate the fact that RA can change my life so much!

I started back on prednisone hoping to be able to get things done around the house for the holidays.  I felt okay yesterday and decided to get the front yard work done.  I was able to do that and was so happy to accomplish something.  Today, I have been in bed all day in pain.  I am so pissed that my body can betray me this way!  I have so many things to do, and I'm stuck in bed in pain and crying over all of this.  I just want a normal holiday season.  I want to be able to put up decorations, enjoy time with friends and family, appreciate the spirit of the season, put up a Christmas tree without suffering with excruciating pain from doing such simple tasks!  If people only knew what Rheumatoid Arthritis does to a person, they would be shocked.

I know I should be more cheerful, happy, etc., but sometimes there's only so much you can take until your spirit is broken.  Right now, I feel defeated.  My shoulders feel like they are being pulled out of their sockets.  My arms hurt all the way to the bones.  My hips are in pain and it makes it almost impossible to rest.  At this moment, I hate my life.  I'm sick of all of the bullshit with rheumatologists, doctors, insurance companies, drugs, the constant pain, and the fact that I can no longer do what I used to be able to do...

I'm always one to plan things, to have hopes and dreams of things to do or be, and I can't do that anymore.  I feel like I've lost myself.  I hope things somehow get better, but I'm not sure they will.  I've tried to keep a positive attitude, and somehow I've lost it.  If someone finds it, kindly send it back my way...

Thought I was gone, huh?

Nope, I'm still here!  I have been very busy the last few months, so I've been missing in action.  I've been doing a lot of work with  Arthritis Introspective.  We had our first annual online auction and raised over $2,000.00!  It was a lot of work, but it was well worth it.  We had a few glitches, but we learn as we go...  I believe next year it will be bigger and better!

My sister and I also had a fundraiser at Smashburger.  It went pretty well.  Not as big of a turnout as we had hoped.  Of all the days to have it, a day with thunderstorms, and voting day!  Duh.  More research must be done before having another one!  LOL!  We did have a raffle at the fundraiser so that helped.  At the fundraiser, friends came out, we made some new friends too.  Cathy came down all the way from Huntsville and was a tremendous help.  She's a fun person to hang out with too!  She and her daughter have great personalities!!  I just have to say the management and staff at Smashburger were great also.  I recommend their burgers, fries, and shakes too!  Very good!  Soooo, all of this has taken up most of my time over the last two months or so.

In my personal life, things have been up and down.  As far as my RA goes, I am not on any treatment from a rheumatologist right now.  I was on Actemra but the funding from my Healthwell  grant ran out and I cannot afford to pay 30% of the price of the medication.  (over $500/month)  So I am back to no meds...  I decided to try a different approach for now.  I researched supplements to help with inflammation, and ones that are recommended for people with RA.  I started about 2 weeks ago with this plan.  I am going to implement exercise, and a healthy diet also.  So far, things have been pretty bad.  Yes, I said "bad."  Lots of pain, red swollen joints, inflammation, fatigue, etc.  I've had days when I can't get out of bed.  I've had to use my cane again to get around the house, and I've had many nights where I cry myself to sleep because of the pain.

Sunday was the first day that I felt a little better.  I still had pain, but not so extreme.  It's kind of odd with my symptoms.  Most of the time, I wake up with some pain, but it is tolerable.  I can get things done around the house, run errands, and do some fun things too.  The terrible pain seems to take over late afternoon and into the night.  My hands and fingers will swell up like sausages.  The pain in my shoulders is unreal, and my knees and feet will swell and are painful too.  Then the next morning it's the same cycle all over again.  There are exceptions like today.  My right shoulder is in so much pain, I can barely stand it.  I think it may be partly do to the weather.  Thunderstorms today.  It was raining cats and dogs just a bit ago.  Seriously, my cat came flying out of the bushes when I was out on the patio!  I was just waiting for a dog to drop out of the sky too!  LOL!

I'm looking forward to going out for Thanksgiving dinner with my family.  It's been quite awhile since we've spent a holiday together.  It will be nice to dress up, (I'm getting a haircut on Wednesday too!), go out to a nice restaurant and enjoy a nice dinner.  I'm staying positive that my shoulders won't be hurting, or it will be hell doing my makeup and hair!  I just hope our family can all remain civil towards each other and not have a public argument or food fight at the restaurant!  Heck, it took my sister being in the hospital last week for our family to talk with each other again.  Yes, we have our issues...  My sister is doing much better, thank goodness!  She had me scared and worried.

Thanks to all that have been supportive, caring, and thoughtful over the last week or so.  I appreciate it, and I know Sherry does too!  The RaRa sisterhood has been great!!

I plan on updating my blog weekly about my progress with the more natural approach to treating my RA!  So check back and see how my ol' body is doing!

My video has premiered on WEGO Health!

Hi there!

I woke up this morning to nice cool weather here in Houston, Texas.  There was still some smoke in the air from the wildfire north of where I live.  At least the winds have calmed down and hopefully they'll get it under control.

I checked my email a little while ago and I received an email notifying me that they have posted my video on theWEGO Health website.  I recently participated in a project with WEGO Health called WEGOHealth.tv-It's a different kind of online video platform dedicated to presenting the authentic voice of the online community by sharing advice, information, and wisdom from Health Activists.

The videos on WEGOHeath.tv are all about getting to the heart of the conversations held here, putting our mission into motion and bring our passion to life.

I hope you'll take a few minutes to watch the video and share it with others in the RA community:  http://tv.wegohealth.com/videos/65-ra-warning-signs

Are there other questions or topics in the RA community that WEGO Health could approach?

I hope everyone had a good holiday weekend!

Michelle

What's happening?

Well, things have been busy lately.  I applied to go to D.C. for the American College of Rheumatology but I wasn't chosen this year.  They wanted to try to get people from different areas of the country this time.  Two of my friends were chosen though!  I want to wish Marianne and Pete the best of luck when they go.  Have a good time and have your voice heard!  Enjoy D.C. too, it's a pretty city!

It's almost a good thing I didn't get picked to go this year as other things have come up that I am working on now.  I'm working with Arthritis Introspective (there's a link to the website on the right side of my blog) on our online auction.  It is to raise funds for our annual Gathering and for scholarships to help with travel expenses for people to attend.  The auction is taking up most of my time each day.  Sending and answering emails, writing letters, phone calls, writing and mailing letters, and following up with possible donors.  Next week will be spent hitting the streets and visiting local businesses and asking for donations.  We have a Facebook page about the auction.  We'll eventually have a preview page of the items up for auction.  AI Facebook Auction Page

I'm also looking for professionals and people to speak at our sessions for the Gathering.  I'm having dinner with one person on Monday to speak about details.  I need to follow up with two other people also.  There is a lot to this but I'm excited and happy to be doing something worthwhile and rewarding.  I truly hope this year's Gathering will be one of the best!  Join our Facebook page and consider coming to the Gathering!!  5th Annual Arthritis Introspective Gathering

I also submitted videos to a website that was looking for people with RA that advocate and use social media to spread awareness and their personal issues with Rheumatoid Arthritis.  So I worked on those last weekend.  They are adding new videos as they edit and complete them.  I'm hoping to see mine on their website soon!  I'll let everyone know if/when they are posted!

During all of this I had my Actemra infusion on Thursday.  On Friday, I felt absolutely horrible.  It was as if I was hit with a sudden flare.  I could barely bend my left knee, which if you've had that, it is extremely painful and makes it difficult to go to the bathroom!  LOL!  Also my hands were swollen, painful and difficult to bend them.  It's still bad now, along with extreme fatigue.  I may end up in bed all day today...

This disease is so unpredictable and it pisses me off.  I can't seem to get it under control.  I know there are many others that have it much worse than I do.  I feel for them.  I  have personally been in a lot more pain than I am right now also.  I just don't know why there isn't something out there that can control our disease so that we can get our lives back.  I want to work again, but it's not possible.  I could not be a reliable or dependable employee.  I have a good day, then a bad day.  I have fatigue.  I never know when a joint is going to flare and cause pain.  I can't stand for long periods of time.  I can't sit for long periods of time either.  I can't do a lot of walking, lifting, use my hands, etc.  The work I'm doing with Arthritis Introspective, I do at home when I'm able.  I can take breaks, and/or a nap when I have to do so.  I can take a day off if my pain level is that bad.  What other job would allow that?  None that I know of.  It upsets me that I can't get out there and make some money, gain back my self-worth, not looked at by others as lazy or a loser... 

I really hope that one day things can change.  I do look forward to working with other non-profits that will focus on awareness, advocacy, and helping others with RA.

So that's it for now.  It's time for the weekend to start.  I hope everyone has a good one!

FATIGUE:

Definition

By Mayo Clinic staff Nearly everyone struggles with being overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Chronic fatigue, on the other hand, lasts longer and is more profound. It's a nearly constant state of weariness that develops over time and diminishes your energy and mental capacity. Fatigue at this level impacts your emotional and psychological well-being, too.
Fatigue isn't the same thing as sleepiness, although it's often accompanied by a desire to sleep — and a lack of motivation to do anything else.
In some cases, fatigue is a symptom of an underlying medical problem that requires medical treatment. Most of the time, however, fatigue can be traced to one or more of your habits or routines. Chances are you know what's causing your fatigue. And with a few simple lifestyle changes, it's likely that you have the power to put the vitality back in your life.

This is something I've been dealing with lately and unfortunately this is when people seem to assume I'm lazy...  It hurts when people think this way, and in exchange it adds even more stress to my life which makes the fatigue worse.  I wish there was something I could do to get rid of the fatigue.  I don't have it all the time but when it hits, it puts me down for the count.  Yesterday there were things that I HAD to do, and when I was finished with everything I was totally exhausted.  Now this morning, I have zero energy...  

Well today is infusion day.  Time to get hooked up to an IV and get pumped with Actemra.  My funds with Healthwell will be depleted after this infusion.  I'm waiting to hear back about other funding options.  If I don't get any; no more infusions for me.  What kind of healthcare system do we have???  It's a constant, jumping through hoops, hoping to qualify for something, dealing with insurance companies, pharmacies, doctors, pharmaceutical companies and more.  

I will write another post later today.  I'm going to try and get a few more zzzz's before my appointment.  I'll update everyone on what's been going on lately...  Some exciting things!

Sjogren's and Michelle's rambling updates

Sjogren's Syndrome.  What is it?  I was diagnosed with this difficult to pronounce disease from my rheumatologist.  I thought, no biggie, just dry eyes, mouth and skin.  For years I've thought, that was it.  Until recently.  A friend of mine told me he also had it.  He seemed to think it was a serious issue.  I wondered why he thought this way...  Then a few days later, I noticed on Twitter that someone I follow had mentioned it was Sjogren's day and had posted a link to a site about it.  This is the first thing I saw:

You can view a larger version of this on the website: http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms http://www.sjogrens.org/home/about-sjogrens-syndrome/symptoms

Shocking to say the least.  I had no clue that all of these symptoms were involved!  I have had so many of these, and it hit home with me.  The neuropathy, stomach problems, muscle pain, neurological issues, and of course the dryness.   My doctor seemed to make light of the Sjogren's and so I didn't give it a second thought.  It's a wake up call to me now that I should research something when a doctor mentions it, or diagnoses me with something.  A friend of mine is dealing with complications from this disease, and is slowly on the mend.  It was great to see you last night Dave.  Brenda too!  Thanks again for the scrumptious dinner and red velvet cupcakes which were divine!  Love you both!

Well, to update how I'm doing...  I woke up today in a lot of pain.  It's pretty much all over.  Last night it started with shoulder pain.  I took a pain pill (I haven't had to take any for quite awhile because I had been feeling okay), and I was able to sleep fairly well.  When I woke up early this morning, just getting out of bed was painful.  Letting the dogs out, woof-woof, feeding them and then making coffee was draining.  I managed to make myself an egg for breakfast then crawl back into bed where I am now writing this blog.  Oy vey.  This disease is so unpredictable, annoying, painful, draining, and just a real pain in the ass!  Okay, okay, I know, quit complaining!  Time for some quiet time and to meditate...  Ohm...

I also applied to go to Washington D.C. again in September.  I'll find out by August 3rd if I get to go.  I really hope so.  I am ready this year to have my voice heard!  I'm going limp around the halls of the House on Capitol Hill and speak up!  Last year, I was a bit timid as it was my first time to do advocacy work in person with members of Congress and a Senator.  Not this year!  I'm more vocal, determined, and the issues that have to do with health care and rheumatology are so important to me.  Go Michelle, go Michelle!  Yes, I'll be my own cheerleader!

Another thing I've been doing is working on the online auction that Arthritis Introspective is having in November of this year.  We are having the auction to raise funds for our annual Gathering that will take place here in Houston.  Probably in March of 2012, dates to be confirmed soon!  The Gathering is a wonderful event.  I've met so many great people with arthritis that inspire me, are so uplifting, and are so welcoming.  Great personalities that have a sense of humor too.  I recommend anyone that has arthritis to try and attend the next Gathering!  You won't regret it.  It's changed my life for the better.  So, I've been working on writing letters, sending emails, brainstorming on ideas of which companies to contact.  So far, I'm enjoying it!  It's cool to be doing something important and that I'm capable of doing on my own time, when I'm feeling well.  I've been working with Scott from Arizona on this project.  He's great as he's done this before and has given me a lot of advice and information.  Thanks Scott!

I also want to do a separate artist event.  There's a cool online site where artists can upload their art and people can buy prints, notecards, etc. with the artist's work on it.  So really the artist doesn't lose anything because they keep their original artwork.  I think it is going to turn out well.  So if anyone has artwork or something they'd like to volunteer for the auction, hey, hit me up!  Or just send me money.  LOL!  Donations to AI actually are important.  You can donate at the website:  Arthritis Introspective

Well that's all of my rambling for now!  Hopefully I'll have good news to report later about our auction, going to D.C. (my fingers are crossed), and hopefully I'll be feeling better too.


Enjoy your Sunday! Blogger out! 

Unusually good day!

Today has been a little unusual.  I had a doctor's appointment early this morning.  So last night I wasn't tired and I was worried about getting up in time for the appointment.  I was also worried about the appointment itself.  Once again, I worried for nothing.  The doctor worked things out with me.  My prescription was covered under my insurance, and the other one she helped me with the mail order pharmacy to get it for cheaper.  All in all a good visit.  I also gave her information on Arthritis Introspective and explained what it is and that we are fundraising for the Gathering next year.  She said she's probably going to donate to it.  I even left her a self-addressed and stamped envelope to make it easier for her!  Hee-hee!  Every little bit helps!

I also went to Walgreen's and my favorite pharmacy tech was there, Kourtney.  She is always so nice and pleasant and she always greets me by name.  Wow, a pharmacy with great customer service!  That's hard to come by these days...  She always checks to make sure my meds are covered by my insurance, and if they're not, she gives me a call.  Great young lady!

I also stopped at a local coffee shop for a cup of iced coffee.  It's a cool little coffee shop.  I'm thinking of having our first AI meeting there.  They let me leave flyers for AI on there book shelf for papers and things!

Today has been great so far.  Feeling happy for a change is a great feeling!  Now for a nap since I got no sleep last night!  The dogs are already in bed ready to sleep.  Smudge is zonked out on the dresser.  Now it's time for me to shut my eyes...

I hope everyone can have at least one good day like I've had today.  Just take it as a surprise present!  I think I even have a bit of a skip in my step.  At least I didn't fall today!!

Enjoy the weekend even though it's hot out there!

One step at a time

My crew of furry kids!

Well, it's the weekend once again.  I had an early wake up via my dogs and kitty at 5:30 am.  I dragged myself out of bed slowly this morning.  I took one step and wham, knee pain.  As I limped to the back door to let the rascals outside, I was thinking, will I ever have a day that I wake up and not feel pain?  It doesn't seem likely.  I was very optimistic about Actemra giving me my old life back.  It has helped some.  I do have more good days than bad days right now...  Living with Rheumatoid Arthritis is so unpredictable.

About 2 weeks ago, my rheumatologist added MTX and prednisone to my treatment plan.  Two days after I started this, I had so much energy, and hardly any pain.  I started early in the morning cutting the back yard and front yard.  Trimming and edging also.  Cleaning around the house. Power washing outside. Cooking dinner and more.  I felt pretty darn good!  I was so happy to be able to do things again, even if it was house work and lawn care!  Unfortunately it didn't last.  I am now having pain again and lots of fatigue.  The fatigue is awful.  It feels like a combination of the tiredness you feel when you get the flu and/or running a marathon...

As I step forward, the work with my support group is moving along.  We've had a few new members sign up.  I had a great visit with Kevin when he came through Houston.  We chatted and talked about goals for AI and the Gathering next year here in Houston.  He really is a good guy.  It's so nice to meet people that make you feel comfortable and you feel you can trust.  A true friend.  I also got to meet up with Vince who lives on the southwest part of Houston.  He is one of the organizers for the Gathering.  We had coffee, talked, and visited the possible hotel for the Gathering to be held.  It is a very nice hotel!  The area is great with lots of restaurants, shops, bars, all within walking distance.  We have to have a bar close by!!  Vince is another person that is really great.  I am happy that I am meeting people that are a positive influence and who inspire me to do better, and be a better person.  We should all be more choosey of our friends.  They reflect on us, and they can either bring you up or bring you down.

All in all things are going well.  I was hoping to be feeling better physically than I am right now, but I do feel better mentally so it's a bit of a trade off...  I've made some changes for the better and I feel great about them!  I'm looking forward to two fundraising ideas.  Actually make that three ideas!  Now to get them all to come to fruition...  There is going to be a lot of work involved, but I'm psyched about it!

I'm taking steps and learning who is important in my life.  I hope to show them that I appreciate each of them as individuals and for their unique personalities.  Friends get us through the rough times, share the fun times, laugh together, and sometimes cry together.  We discuss ideas, life, personal problems, issues, jokes, and enjoy each others company and conversation.  The negativity is gone from my life.  Trust is an important part of friendship.  I'm even reaching out to my family without having turmoil.  So things are looking good in that aspect!  I miss certain people.  Chelsea!  (hint-hint)  I'm going to have to get my ass to Austin to see you.  It's just the long drive that gets me.  Just driving around Houston on Wednesday wore me out.  Maybe I can get hopped up on prednisone for the drive!!  LOL!

Well, today may be a day that I don't do much.  It's going to be another hot one here in muggy Houston.   I slept for a bit last night, but I feel like I didn't sleep at all...  I hate it.  I did manage to water all the plants this morning, as they were drooping.  I'm hoping to get some more tomatoes out of the plants we have left!  We still have basil, mint, and rosemary growing pretty well.  Also the Hibiscus are doing great.  Blooming all the time!  Next year will be even better.  I'm going to read about gardening over the winter and go all out next Spring.  For now, I'm ready for Summer to be over.  I'm ready for the cool breezes of Fall.  Enjoying coffee on the patio with the windchimes swaying and singing in the air...

As for now, I feel pretty good.  Certain parts of my body may be in pain, but my mind is much clearer and happier!

One last thing.  I really hope I get to take a trip up north this Fall!  I'm looking forward to doing something important to me, and to visit a couple of really great friends!!  (Whether they like it or not!)  So I'm keeping my fingers crossed!  I'd love to visit NYC with Joan and Marianne and enjoy the city.  Possibly go on a photog hike with Joan.  Maybe even the Jersey shore to walk barefoot in the sand...

Each day, I take one step at a time and see where it leads me.  Always looking for the positive direction and hoping for the best!

Michelle