Howdy! It's been a while since I've posted. As I've mentioned before, one of the most needed characteristics for dealing with lupus is FLEXIBILITY. I'm a type A (like, to the core), and flexibility is not my greatest feature. You can tell from the title of this post that my goal of completing one half marathon per month from May to November is ... well, let's just say it's on hold ... indefinitely.
that I may praise you.
If I brought you a burnt offering,
you would not accept it.
The sacrifice you want is a broken spirit.
A broken and repentant heart, O God,
you will not despise.
I ponder all your great works.
I think about what you have done.
I reach out for you.
I thirst for you as parched land thirsts for rain.
Don't turn away from me,
or I will die.
Let me hear of your unfailing love to me in the morning,
for I am trusting you.
Show me where to walk,
for I have come to you in prayer.
Save me from my enemies, LORD;
I run to you to hide me.
Psalm 119:28-32
and your lips with shouts of joy.
Lupus itself can cause depression; some lupus medications can cause depression; dealing with the symptoms, the changes to your body, and the loss of power that lupus brings can cause depression.
Running isn't about medals or PR's. It's about taking your POWER back.
This is SO true for me.
I am not a fast runner--in fact, my
fastest mile ever was only 10 minutes.
But, I'm not running to be fast.
Although I've never finished dead last in a race (though I've come close), I've also never finished first.
But, I'm not running to be first.
As a runner with lupus, it is almost impossible to have a regular, charted training schedule, and because of that it's very hard to make progress and become a more efficient, fine-tuned runner.
But, I'm not running to be a fine-tuned runner.
No,
I'm not running to be fast or first or fine-tuned...
I'm running to be free from thinking about appointments and treatments. I'm running to be free from worrying about medications and side-effects. I'm running to be free from the fear and disappointment. I'm running to be free from the depression and chase my joy! I'm running to free my mind and spirit so I can better hear my Lord's voice and receive what He has for me.
And even though I haven't been able to run nearly as much as I'd like the last 6 weeks or so, all of the miles, all of the sweat and effort, all of the little (or huge!) victories are STILL IN ME! Nothing can take that away.
And even though I haven't been able to run nearly as much as I'd like the last 6 weeks or so, all of the miles, all of the sweat and effort, all of the little (or huge!) victories are STILL IN ME! Nothing can take that away.
Me and the Magster
Because I have obligations as a musician on Wednesdays, Thursdays and Sundays, I take the methotrexate on Sunday nights. I spend Mondays in bed. By Tuesday, I feel much improved from the side effects. Just last week I finally started to see some improvement in my joint pain and fatigue level, although they haven't been eliminated. Hopefully as we titrate up on the dose the pain and fatigue will continue to lessen. I've had some mouth sores, itching and mild hair loss. I also have heightened fatigue, stomach pain/nausea and dizziness for 24 to 36 hours, but if the improvement in joint pain and overall fatigue level continues, I'll take it! Hopefully adding back the Benlysta will help even more.
My rheumatologist explained lupus medications to me in this way: Plaquenil and Prednisone are the base-line treatments. Drugs like CellCept, Imuran and Methotrexate are added as mid-level disease fighters. When the mid-level drugs are not enough, things like Benlysta, Rituxan or Cytoxan are added.
Distance running can teach us a lot about life. Some runs are really difficult. You hurt, you're hot, you can't get your breath, you hit "the wall" and you lose the desire to continue. You just want to hang up your shoes and quit. But, something makes you push through to the end, other runners offer support, prayer gets you going, and overcoming those obstacles makes reaching the finish even sweeter. It's just like life; sometimes life hurts, sometimes it REALLY hurts, and sometimes you just want to quit, curl up in a ball and cry forever. But, with God's help, with the power of prayer, with the help of people who care, you find the will to keep going, keep fighting, keep overcoming those obstacles and enjoy the sweet victories along the way.
A lot of people don't realize that chemotherapy is used to treat lupus. Some people with lupus take chemotherapy indefinitely, for months or years, not just for a set period of time. I've talked with some lupus friends about how often people will tell us, "Well, it could be worse; you could have cancer." And while it's certainly true that cancer is HORRIBLE and painful, and that it causes suffering and death, and that we need a CURE for CANCER, lupus is no walk in the park. Lupus can be horrible and painful, it can cause suffering and death, and we need a CURE for LUPUS, too. Both my father and step-mother suffered from cancer. I wouldn't wish that on anyone, especially me!
But I wouldn't wish lupus on anyone either.
Okay, enough with this serious stuff!
Just this past weekend I started trying to eat gluten free. While I don't have celiac disease, a lot of people with autoimmune diseases see an improvement in their symptoms when they eliminate gluten. Gluten has been shown to increase inflammation in folks with immune system diseases. I hope that eliminating gluten will cause an improvement in my energy level and cognitive dysfunction. I also hope I don't go crazy! I LOVE BREAD! And gluten is hiding EVERYWHERE! Dressings, sauces, snacks, cereals, shredded chesses, soups, etc. We'll see what happens. Maybe I'll even lose some weight, too, as I put on about 10 pounds practically overnight since starting the methotrexate.
Here's a recent, funny "blame it on lupus" incident...
I like to shop (online mainly) at jjill. Love their clothes, love their sales! Anyway, back in early July, I ordered a lightweight sweater from there, which I wore once, and then the neckline unraveled. I called and asked them to send me another, which they did. However, I subsequently started the methotrexate, and my weight blew up about 12 pounds in 2 weeks. When I tried on the new sweater, it didn't fit! So, I called and ordered another in a bigger size. The operator was like, "wow, you must REALLY like this sweater..." I assume because she could see that I'd ordered it THREE TIMES in a month!
Blame it on lupus!
N E W S F L A S H
This happened a few months ago, but I forgot to mention it ... our local newspaper did a story about me in May for Lupus Awareness Month.
Click on the link below the photo to read the article:
In another matter, our male cat, Fflewddur Fflam, was diagnosed
with feline asthma last month.
We thought he had a MAJOR hairball, but after an entire weekend of wheezing and horking--and one very scary night when we thought we might lose him--our vet diagnosed the problem. Fflewddur was put on steroids and immediately improved. I also take steroids to control lupus. So, the joke of the moment is that my cat and I are both taking steroids. The steroids are helping my little Fflewddur bug. The two times that I accidentally forgot to give
him his medicine, he had asthma attacks.
If you've never seen a cat have an asthma attack, it's really pitiful!
So, I'll leave you with a photo of my new running kicks! Nothing like a new pair of shoes to get you motivated to get back out there! Here's hoping we can wear them out together!
Have you never heard or understood? Don't you know that the LORD is the everlasting God, the Creator of all the earth? He never grows faint or weary. No one can measure the depths of his understanding. He gives power to those who are tired and worn out; he offers strength to the weak. Even youths will become exhausted, and young men will give up. But those who wait on the LORD will find new strength. They will fly high on wings like eagles. They will run and not grow weary. They will walk and not faint.
Everything (everything) will be alright,