The Art of Finding A Cure

December 9, 2010

Northeast Minneapolis, 2010

A lot of things have been going on lately related to my arthritis.  Some good, some bad, some incredibly frustrating.  “The Art of Finding A Cure” was an extremely good “arthritis thing” I participated in last Saturday night.  The event was organized by The Arthritis Foundation and included an excellent presentation by nationally renowned rheumatologist Dr. James Louie, who  profiled the life and works of famous artists who had varying forms of arthritis, including Pierre Auguste Renoir, Raoul Dufy, John Outterbridge and Henri de Toulouse- Lautrec.

Pierre Auguste Renoir, "On the Terrace," 1881, Oil on canvas

In addition to Dr. Louie’s presentation, and a nice dinner, there was also an exhibition of artwork made by children and young adults who have arthritis.  The artwork was bid on and auctioned off with the proceeds going to the Arthritis Foundation.  I had two of my own photographs in the exhibition/auction which are included in this post (black & white smoke stack photo and a photo of the construction of the new Lowry Bridge in NE Minneapolis).  I was happily surprised to see that both of my photos were bid on and sold!

Construction of the Lowry Bridge, NE Minneapolis, 2010

It was a great night and I’m really glad I went to and participated in the event.  Seeing the creativity and care put into the artwork made by the kids and young adults as well as learning more about other great artists who suffered immensely due to arthritis was quite an inspiration.  It’s wonderful to see people fighting for their passions in life and not letting arthritis or other diseases stop them from doing what they love.  I need to remind myself of the importance of this more often.

New job, new fatigue

August 15, 2010

I just started a new FT job last week working in the billing department for a non-profit.  It’s a huge relief to be able to quit my previous job of over a year (call center/debt collections), however I have to say I’m having some trouble adjusting to this 40 hour week schedule.  I’ve been incredibly exhausted all week – moreso than usual.  I’m a little worried about it, because my fatigue seems so extreme and maybe not normal?  I don’t know what’s going on.  I’m hoping I’m just being my usual hypochondriac-self and worrying for nothing.  The new job has also been stressful due to the fact that I have no medical billing experience, so there is a lot to learn.  I really hope that this wave of fatigue gets better as I get more used to working FT again and feel more comfortable with the work I’m doing.  This weekend I basically did nothing, except sleep and take care of a few small errands.  I was pretty disappointed that I wound up staying in last night instead of going to a friend’s birthday get-together.  I’ve been dying for some social interaction lately, but last night I wound up feeling so wrecked and tired I couldn’t make myself get ready to go out.  So yeah…I really hope my energy level picks up here soon.  I just got my labs done and I’m not anemic (although my iron isn’t super high either – it’s at a 12).  I could lie down right now and take another nap but I’m trying to make myself actually get something done this weekend.

In arthritis news – both of my knees are still bothering me and I’m back on prednisone for the last two weeks.  This is very weird and I’ve never dealt with BOTH of my knees feeling like this before.  Once again, I have no idea what’s going on, but I hope the pain goes away soon.

Today the weather is beautiful. I should go sit outside and read (but I’ll probably fall asleep!).

FLARE-UP

July 21, 2010

Rheumatoid arthritis is such an obnoxious, sneaky disease.  Example:  I went to bed perfectly fine last night (well, my normal “fine” that is).  This morning I was cruelly awakened by a sharp stabbing pain shooting through my left knee whenever I moved it.  My initial thought was, oh no…not this again.  I had had this happen once before when I had to go to the E.R. because the pain was so intense.  Luckily this morning I was able to carefully roll out of bed without passing out from pain.  I hobbled into the living room and noticed that my left knee was swollen compared to my right one.  So now, here I sit writing this blog with a bag of frozen peas icing my knee while I wait for my rheumatologist’s assistant to call me back about a plan of action.  I’m pretty certain that the doctor will order me to go back on prednisone.  Hopefully I won’t have to go into the clinic today.  This flare-up is especially frustrating because today would be Day 3 of me being prednisone-FREE again.  I so badly want to get off of that medication and STAY off of it.  I’ve been tapering down/off for the last three weeks.  If Dr. B puts me back on it, we’ll have to start the entire process over again.  However, I’d rather take prednisone right away if it will knock out this flare-up.  Anytime something like this happens, I get extremely nervous, of course, that damage is being done to my joint and that it will never return to normal.

Another depressing thing about this flare is that I’ve recently been enjoying riding my bike a lot.  I’ve been trying desperately to lose weight by biking but have also come to really love it and look forward to my daily rides.  I’m assuming that there will be no bike rides for a while thanks to this knee.

RA is really a jerk sometimes.  It obviously doesn’t care that I have two medical appointments I need to go to today.  Nor does it care that I also had to call in sick to work for tonight.  I know life is full of surprises and interruptions for everyone, chronic disease or not.  However I’ve noticed that my R.A. seems to get a kick out of rearing its ugly painful self in my life when it’s most inconvenient.  It’s a very helpless feeling when a disease controls you, forces you to lie around with a bag of peas on your leg when you feel perfectly fine otherwise, and stops you from doing the things you love – like those wonderful summer bike rides.

Running to stand still

April 28, 2010

Spring is finally here, it seems, and I should be joyous and giddy and rolling around in the grass with happiness.  Right.  I would be skipping through the dandelions right now if I weren’t so exhausted from working two jobs and trying (unsuccessfully so far) to get ready for a fast-approaching art show/event.  Dealing with large medical bills that keep pouring in and problems getting medical assistance for the Remicade infusions I desperately need are also huge weights upon my mind and body.  (Sorry if this isn’t a very cohesive post, by the way, but I’m just trying to type out the mess that’s jumbled in my brain at the moment)

I just started a new Census “operation” and I’m in training this week.  This is the fourth Census job I’ve worked on since last year and the training is the same as all of the others – HELL.  And by hell I mean boring as hell.  I’m not entirely sure if hell is boring, but Census training is definitely a form of slow tedious torture which seems like hell to me.  It also doesn’t help that I sit next to an irritating blabbermouth woman who watches me like a hawk and constantly asks the leader, the class, and me stupid questions (such as demanding to know what I’m eating for lunch every day, among other things).  By the time I escape for the day my head is about to split apart and all I want to do is go home and sleep for a week or two.  But no, then I must race to my evening debt collection call center job for another four hours spent being bored out of my mind with a few interruptions from people swearing at me over the phone.  This is not my “dream job” either.  My tension headaches have returned and my fingers are starting to swell a bit and become painful because I’m due for my next I.V. infusion.  I’m actually getting really worried about this but what can I do?  I have no choice.  I cannot afford to pay almost $1,000 out-of-pocket for this treatment.  I’m currently awaiting another medical assistance charity/foundation to review my application to see if I can get assistance from them for Remicade.  They’ve helped me out in the past, for which I’m truly grateful, yet I’m reminded once again how they have a bad tendency of screwing things up.  My application is now being held up because they apparently have not yet received the form from my doctor.  After several phone calls, I was told my doctor DID fax it to them already.  So.  Is it lost?  Do they not know what they’re doing?  Was it faxed to the right number?  So frustrating.  I have to call there yet again tomorrow to try to sort this out.  I’m afraid that it will probably be June before I can have my medication/treatment again.  This is stressful and worrying because I do NOT want to have to go back on prednisone in the meantime.  I’ve been so happy and relieved that I’ve been able to stay off of it for the last three months.

Anyway, sorry for the bitch-fest but I’m just really fed up with everything now.  I’m tired of working multiple jobs that never earn enough to pay the bills.  I’m tired of fighting with my insurance company and just medical stuff in general.  I’m especially disappointed because I found out tonight that I’m probably not going to be able to get the time off work I requested to get ready for the art show.  I hope I don’t have to bow-out of it.  I just don’t have time to do the things that I actually care about, and that’s what bothers me the most.

Ok, done whining.  I’m going to read now for a bit before bed.  Oh!  Here’s some GOOD news – I managed to get back on my bike today quick before work and did another 4-mile ride around Palmer Lake.  I haven’t been biking for two weeks now (SHAME), so I’m glad I made myself do it despite being exhausted from work.  It was so beautiful riding along the trails, too, with everything in bloom.

MRI update: I went back to my orthopedic doctor last week to find out the results of the MRI on my right ankle.  Once again I was presented with good and bad news.  The good (great) news is that my ankle LOOKS fine and there is no damage to the joint or cartilage.  This is a huge relief, of course.  But then he told me that there is nothing he can do for me based on the results of the MRI.  Tears sprang up in my eyes and began to roll down my face despite trying to control myself.  How can there be nothing “wrong” when I’m in so much pain?  I appreciate that he doesn’t want to do unnecessary surgery, yet I can’t understand how nobody can figure out how to fix my ankle after all of these years (the ankle problems started five years ago).  So basically I left the office a crying mess wondering what to do next.  Second, third, fourth opinions?  Mayo Clinic again?  It’s almost too exhausting to even think about much less go through.  Back to the beginning, back to “square one.”  All I want is to be able to walk normal again, or as normal as possible, with less pain.

In better news, I have rediscovered the joys of riding a bike and have established a goal of biking 3-4 miles a day around a small lake near my house.  I went yesterday and Monday and it felt great, despite being a sweaty huffing-puffing wimp by the end of the ride both days.  It’s raining right now but I still want to try to go before I work tonight.  RAIN WILL NOT STOP ME!  Nor will this disease, dammit.

I don’t know what I’m going to do about this ankle, but I’ll have to figure out something.  I just can’t believe that there’s nothing that can be done.

X-ray, EOB, PANF, MRI

April 3, 2010

Once again I can’t believe how long it’s been since I updated this thing.  I am truly sorry, if there’s anybody out there missing me (hello? hello?).  I’m still alive and unfortunately I still have arthritis and all of the joys and pains that go along with it.

So what’s new?  After a seemingly failed synovectomy surgery on my right ankle three years ago, I basically had given up in frustration on the stubborn joint.  Just recently I decided to take up the fight again and try to see if there’s anything else/new that can be done to help me.  I’m so tired of having to limit myself and being forced to sacrifice little things that I desperately want and enjoy, such as taking a simple WALK, and being able to travel.  I can’t stand to be on my feet for very long due to this constantly swollen and painful ankle.  I don’t understand why it has been such a mystery and struggle to figure out what’s wrong with it and to fix it.  So, I have started the “process” again of doctor appointments, X-rays, fighting with my insurance company, and having to hand over most of my paychecks to pay the bills.  I just had another MRI yesterday and will find out the results in time for my doctor appointment Tuesday.  I fear that another surgery is on the horizon, but what other choice do I have?  I need to get my life back.  Soon.

Despite all of this complaining, I do have some wonderful news that I saved for last.  I have been PREDNISONE-FREE for almost two months!  You have no idea how happy this makes me.  Well, maybe you do.  I’m extremely thankful for this and I hope it can continue for a long time.

OK, that’s all for now.  I’m also very happy to be back writing on this blog.  I have some exciting and positive things coming up soon with the Arthritis Foundation, but I’ll save that news for another time.

Good night!

EOB = Explanation of Benefits = how much money I have to shell out for medical bills

PANF = Patient Access Network Foundation – I just found out that they are currently out of funds for rheumatoid arthritis patients, so now I’m on the waitlist.  This is bad since I have an upcoming remicade infusion at the end of the month and have no way to pay for the out-of-pocket portion ($900).

Weight of the world

February 22, 2008

Once again time flew by and I haven’t written in here for a while.  Apologies again to my maybe two readers (ha ha).

For the past month+ I’ve been trying very hard to improve my health and lose weight.  I began an aquatic whole-body conditioning class that meets twice a week (I wrote about this once before but deleted my post in embarrassment because my instructor found this blog and told me about it at class one week. I’ll probably repost it sometime soon once I stop acting like a baby).  I also started this “Colorful Choices” program through work that helps a person eat more fruits and vegetables, as well as giving up all soda and drinking a lot of water.  I’ve been doing pretty well with these things, yet I’m growing more and more frustrated because I’m not seeing ANY results – not pounds-wise or in clothing fit.  What is the DEAL?  Do I have to run miles each day and starve myself to lose even a tiny bit of weight?  I’m so unbelievably sick of this weird weight gain (from the last 5 years) that never goes away despite my efforts.  I just want to be my “normal” self, 25-30 lbs lighter, which isn’t even “skinny.”  I’m working hard yet the flab is hanging around (literally).

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