August 10, 2011

Bike lock demonstration – The Bike Library Program

I just got back from taking a short bike ride, about 2 miles, which felt really great. Because the weather here has been so disgustingly hot and humid for the past month or so, I’ve been neglecting riding my bike (among other things). Maybe that’s a bit lazy of me, but if you ask anybody who lives in the Twin Cities area they’ll agree that lately it’s just been too damn hot to do anything. This evening I photographed the last Bike Library orientation of the season too, which maybe helped put me in the mood to bust out my own bike again. Sibley Depot’s Bike Library Program has been a lot of fun to be involved with and I’m very impressed with the work they’ve been doing in the St. Paul and Minneapolis communities.

In other news, while I’m still unemployed, I have been trying to keep busy working on my own stuff. I finally bought an Internet domain and web host and started building my own photography website/online portfolio. It’s pretty basic and minimalist, but that’s the look I’m going for, I think. Maybe someday in the future I’ll be able to make it fancier but for now I think it will work out fine. I hope to use it as a reference for potential employers and job opportunities.

Here’s the link:

Feel free to let me know what you think and if you have any web design tips or advice!

Okay, I’m really tired yet hyper-wired on caffeine. I will give up coffee again tomorrow, I promise. Or the day after tomorrow.

Goodnight, all!

Bikes are awesome. ♥

Sibley Bike Depot:

I’m having a flare-up now for seemingly “no reason.”  Both ankles, knees, hands and feet are really hurting.  I DO NOT WANT TO GO BACK ON PREDNISONE! Hopefully if I drink more water, lay off the caffeine again,  and get more sleep ASAP this will get better.  Otherwise I really have no clue why this is happening now other than my body wanting to be a huge jerk.  Do you ever find yourself silently urging RA to just leave you alone?  I’d love it if it would take a damn break once in a while.  I’m so crabby.  Go away, pain.  Go away.

RA today

February 1, 2011

Sorry for not updating yesterday but I stayed home from work sick and basically spent all day lying on the couch watching TV in my pajamas.  I don’t have that much to report right now anyway.  I seem to be having a small flare-up in my right shoulder at the moment which started sometime last week.  The pain isn’t that bad, it’s just more of an annoyance.  I think I should be able to get rid of it without having to resort to going back on prednisone.  I hope.

Regarding other exciting RA info – I keep meaning to call PANF (Patient Access Network Foundation) to see if I still have available funds from them to use toward my next few Remicade infusions.  I’m due soon for my next infusion and I don’t want to have to put it off, of course.  This shoulder flare-up is making me suspicious of needing the Remicade soon.  PANF helping me out with my deductible/out-of-pocket for the insanely expensive Remicade infusion is wonderful and I appreciate it so much.  However I’m also not looking forward to having to deal with all of the paperwork crap and waiting two months for everything to go through from Fairview billing/health insurance/PANF.  Dealing with all of that is such a huge pain, but I know I shouldn’t complain.  Without the help from PANF and/or the HealthWell Foundation, I would not be able to get the medication I so desperately need.

Advocacy Summit 2011

January 10, 2011

News!   I decided to throw caution to the wind (and the remaining few dollars I have) and register for the 2011 Arthritis Advocacy Summit in Washington, D.C.   The summit is February 28 – March 2nd.  I’m really excited but also a bit nervous. I’ve never been to DC before.  Despite going all alone and not knowing anybody, I’m sure it will be an incredible experience.  I hope.  Now I just have to figure out how to pay for it.  Actually, I don’t want to jinx myself but I applied for a travel stipend which, if I “win” it, I’ll get $1,500 to go toward travel expenses.  I find out tomorrow if I get it.  I really hope I do because money is tight and it would help out so much.  I was on the fence about going this year due to the large pile of debt I’m working hard to pay off, but I really don’t want to wait another year.  Cross your fingers I get the stipend!

In other arthritis news, there isn’t much news.  I’m still off prednisone (I think it’s been at least a month), so that’s great.  I’m still staying off caffeine and I think that’s helping to keep the inflammation at bay.  I’ve been trying to take fish oil capsules at least once a day to also help battle inflammation.

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!).


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.


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