One Step Forward, Two Steps Back

March and April were pretty good months.  Sadly, my lupus got jealous and wreaked havoc on my knees and shoulders, or I guess I should say it wreaked even more havoc on my shoulders and knees (I have had issues with these two parts for a LONG time).  I was up to 25 minutes of non-stop running (Week 7, Day 3 of the 10K Runner program). Now I am back down to Week 1, Day 1, but the thing is I refuse to give up.  This morning I actually made it to the boxing class at the gym.  I had to modify most of the warm up, and I could not take out all my aggression out on the bag like I really enjoy doing, but I did feel good when I walked out of the room.  I have to be very carefully with the hooks (those were pissing off my shoulders no matter how light I would hit the bag).  After the boxing class little man and I went up to the treadmill and did 25 minutes (5 minutes warm up, 15 minutes of 1 min run/1 ½ min walk, 5 minutes cool down).  Little man enjoyed going his pace and I went my pace (surprise, surprise he beat me!!!!)

What all this boils down to is I refuse to give up, there are days I might think it is a good idea, but I still won’t do it.  I don’t care how many steps I take back I will keep fighting to go forward! 

On a side note… for the past seven years I have been slowly working on my bachelor’s degree, graduation was last Saturday (which was stupid), today I officially graduated cum laude!

Do not let what you can not do; interfere with what you can do.

–John Wooden

Lupie Training

After my flare up last year I have had to take a major step back with my racing life and start over at square one.  I started off great, I was enjoying MMA class, I was back on the treadmill, I was lifting weights, I was rocking it!  Apparently my lupus didn’t like that, all of a sudden my shoulders, wait, my big toe went nuts which made my doc worry about gout, luckily the test came back negative.  Then my shoulders so there goes boxing and swimming, then my knees (primarily my left) went nuts to the point it buckles backwards, my energy has plummeted – again! 

I knew this year would be a recovery year, but I didn’t realize how pissy this stupid disease was going to be.  On the days I can barely walk I try to make it to the pool to at least do something, some days I am actually able to get some miles in outside, but my family won’t let me go out by myself.  Luckily, one of my kiddos LOVES running so when my body actually lets me do some miles I have someone who will not only go with me he also cheers me on (I am horribly slow these days!).  

I understand this disease is unpredictable, I understand that this disease can be debilitating.  For better or worse I am not very understanding and I sure the hell am not very obedient!  I actually thought about trying to get my half fanatic this year, but my best bud lupie has made it very clear that it is NOT going to happen!  I do have a race later this year and (God bless kiddo) I am hoping my lupus does not get in the way.  If it does maybe little man will push my wheelchair so we can still do it!!!!!

Lupus Awareness Month

May is lupus awareness month.  I was officially diagnosed three years ago and have dealt with a number of minor flare ups and two major flares during that time.  Obviously I was in at least one flare up before I was diagnosed!  
Lupus is a very difficult disease to diagnose and there is no cure!  There are treatments (which can be horrific) but basically it is hold on for the ride of your life.  It affects organs, joints, memory, etc. 
 
Definition
By Mayo Clinic staff
Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.
Lupus can be difficult to diagnose because its signs and symptoms often mimic those of other ailments. The most distinctive sign of lupus — a facial rash that resembles the wings of a butterfly unfolding across both cheeks — occurs in many but not all cases of lupus.
Some people are born with a tendency toward developing lupus, which may be triggered by infections, certain drugs or even sunlight. While there's no cure for lupus, treatments can help control symptoms.
Symptoms
No two cases of lupus are exactly alike. Signs and symptoms may come on suddenly or develop slowly, may be mild or severe, and may be temporary or permanent. Most people with lupus have mild disease characterized by episodes — called flares — when signs and symptoms get worse for a while, then improve or even disappear completely for a time.
The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:
•    Fatigue and fever
•    Joint pain, stiffness and swelling
•    Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose
•    Skin lesions that appear or worsen with sun exposure
•    Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud's phenomenon)
•    Shortness of breath
•    Chest pain
•    Dry eyes
•    Headaches, confusion, memory loss

I can honestly say it has changed my life.  I have also found out who my true friends and family are.  My sister and my kids have been amazing!  My parents are just starting to understand the magnitude of this disease.  I am not sure what hurts me the worst, the pain of the loss of memory/brain fog.  A few months ago my sister was asking me about something and she started getting mad at me until she realized I had no idea what she was talking about.  The fatigue is heart breaking, my boys have learned to look at it in a positive light.  If the fatigue is kicking my butt we have a movie night where we hang out in my room and watch movies. 
The physical pain is something that is different for everyone.  The amount of pain, the ability to tolerate it, etc.  I have gone through two major diet changes in the past five years which seems to help some times, but defiantly not all the time.  Prior to my diagnosis I was running marathons, triathlons, I was very active.  Now I have to play my physical activity day-by-day.  I cannot/will not make promises anymore because I don’t know if I will be able to move tomorrow or not. 
Don’t get me started on the side effects of the medicine!  Prednisone?  Weight gain!  Yea, like lupies need extra weight on top of all the other issues.  Methotrexate?  Difficultly breathing, weight gain, oh yea and it is also an abortion pill! Plaquenil – you need to have an eye exam every six months because it can mess with eye site! Hair loss, mood changes, confusion…
I asked my younger son how he feels about me having lupus and he said he hates it and it scares him.  I asked him to expand on it and he said, with tears in his eyes, that the way I act, “you know in pain all the time”. 

Lupus sucks and there is no cure!

March

March was an interesting month.  I started off the month with a new piece of artwork which made the gym something of a challenge.  I hit boxing and kickboxing (barefoot classes) and the elliptical machine with flip flops on!  I managed to lace up my shoes again just in time to run the St Patrick’s Day 5K.  I was slower than dirt, but I did it.  I have a ways to go before I get back to where I was but I am on the right path.  Had another good week and then I started slipping backwards again.  My knees, my ankles, my toes, my shoulders, my wrists and my back (still) hurt.  Right now I am still functioning, I think a lot of it has to do with the whole gluten free route I have been on since January.  I have my good days and I have my bad days (when I am stuck in bed). 

I have my sights set on a couple of races, nothing to dramatic, but I have hope and I am going to fight like hell to make sure I can do them.

The numbers for March were something for me to smile about! I haven’t seen numbers like this in about a year. (July 2012 was mostly bike miles)

 

February Wrap-up

My goal for February was to “run” on odd days and swim on even days.  I missed (took off) four days.  I figured I would be brave and try a new class at the gym, actually it was two and I fell in love!  Boxing and kickboxing both have been added into my workout regime. 

On the pain front, yea, I had some issues, but nothing major.  My energy was pretty good.

Weight? Down 10.6 pounds!!!!!

 

March will be entertaining; I got some new artwork done on my foot which makes my “normal” workouts not really possible.  For two weeks (give or take) no shoes or socks! Well, I can’t have the rubbing and the pool is completely out until my foot completely heals.  Luckily both the boxing and kickboxing classes are barefoot classes, spinning I can rest my foot on the top of my shoe and still get a workout in, yoga – shoeless of, course!  For rest of my cardio I have been getting on the elliptical machine in my flip flops and just go at it.  Once my foot heals I am planning on trying out Zumba, seems like it would be fun! The issue I am facing right now is my energy level is starting to go down and I am starting to have pain again in my left arm (up to my elbow).  I am hoping all this is just diet related and everything will clear up nicely. I am refusing to let this be another damn flare up.  Only time will tell!

Taking Things for Granted

Over the past week we have had three good snow storms.  Since Thursday ended up being a snow day for the kids and well, I wasn’t going to go anywhere which meant I would have to miss daily visit to the gym.  The law here requires snow removed from sidewalk within 24 hours of the snow stopping, so I figured I would I get my workout done by shoveling the snow! Last night we had a pseudo blizzard which messed up my shoveling job, so I was back out there this morning getting the snow off the sidewalk. Back in the fall the leaves were falling by the bucket, after Halloween my kids and I were racking up the leaves.  I could do two rake strokes and then I had to sit down.  My kids had to do most of the work because the stupid flare up would not let me.  I was happy to spend a half hour shoveling the snow.  When I was done, I came inside changed into dry warm clothes and happily continued on with my day.  This morning after re-shoveling, I hopped in my vehicle and headed off to my day full of appointments. 

I hate that I was so sick for so long, but in a way I am glad I was.  I had the opportunity to fight like hell to do menial simple everyday things, and now that I can do them almost like a normal person it makes me feel like I am doing so much more. 

Above my current physical level, I still can’t say enough about my family.  There is no way I would be able to stand on my feet like I have been.  My kids have gone above and beyond being my little doctors/therapist (my younger kid loves setting up my TENS unit).  My sister has been my rock, my strength, she has been sister to me and mom to my kids.  My friends have been amazing emotional support and knowing they are there and offering to help means the world!

 

February

I realize I am three days early, but I am going to say that I rocked February!  My goal for February was to swim on even days and “run” on odd days. I had four off days this month, I didn’t “swim” necessarily each day I was supposed to, there were swim days that I pool walked.  Wednesday ended up being neither swim nor run days because of kickboxing and yoga, but Thursday got both activities (except when it blizzard!). 

This is the third week that I have had boxing/kickboxing on the schedule, unfortunately today boxing was cancelled so I had to be flexible.  I did Week 1, Day 1 of the C25K again (I had it on the wrong workout), then a half hour on the elliptical machine, followed up with 35 minutes of random hills on the treadmill.  I got my hour and a half in, but I didn’t get my boxing.

Tomorrow is an official weigh in for the 90-day challenge at my gym, I will be using tomorrow’s weight as my official end of month weight for February.  January I lost 4.9, this month I am hoping for a bigger number.  But as long as it is going in the right direction I will be happy. 

My official numbers will be posted on Thursday!