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.
And, while I've been working hard to attach double-stick tape and flypaper to my joy...it's a tricky business. It seems that joy should be easy to grasp and hold, but the fact is that joy can be a slippery little sucker. Unfortunately, when you're dealing with lupus, holding on to the things you love the most can be like opening a jar full of homemade sauce with greasy hands ...
... you make no progress getting that thing open, you grit your teeth and put all your energy into opening that jar. It starts to slip around, you lose your grip, then you drop that beautiful thing you're holding onto, and you make a big mess. Maybe you cry when you see what happened, or you get frustrated while you're trying to clean up that broken mess. Of course, cut yourself on the glass and make things even worse, and then you end up hurting, throwing the whole shebang in the trash and you just give up on having that thing (the sauce--you know, the project, the vacation, the relationship, the activity --like running--) that you love so much.
Ps 51:15-17
Unseal my lips, O Lord,
that I may praise you.
You would not be pleased with sacrifices,
or I would bring them.
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.
Ps 143:5-9
I remember the days of old.
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.
Come quickly, LORD, and answer me,
for my depression deepens.
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
My soul is weary with sorrow;
strengthen me according to your word.
Keep me from deceitful ways;
be gracious to me through your law.
I have chosen the way of truth;
I have set my heart on your laws.
I hold fast to your statutes, O LORD;
do not let me be put to shame.
I run in the path of your commands,
for you have set my heart free.
Job 8:21
God will yet fill your mouth with laughter
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.
So, just how much running have I been doing? Not a lot and not enough!
Since the beginning of July, my running has not been regular. I've had several episodes of heat exhaustion, even in relatively mild temperatures. Sun exposure and lupus don't mix and when you're also taking medications that warn you to limit sun exposure, things get even trickier. Most recently, I was running a 4.5 mile route near home with temps in the low 60's. It was very early and misty when I left home, but the sun burned off the fog at about mile 3. Nearing mile 4, I broke out in goose bumps, got dizzy and began to stumble. I got nauseated and had stomach cramps and my arms and hands were cold. I had stopped sweating. Thankfully, I was near the end of the run and near home, so I walked the rest of the way, stopping for breaks in whatever shade I could find. It scared me enough that I haven't been outside for a run since. I often refer to the treadmill as the dreadmill, but until the sun gets less intense, the dreadmill and I are going to be buddies.
As the title of this blog entry says, I've had to scratch (pull out, i.e. not do) three half marathons. In July, I did not do the Burgers and Beer Half Marathon. Because it is a virtual race, I can make that one up when I'm ready and still earn my finishers' medal. I DID bike a half marathon in July, and that felt great! I didn't do the Columbus Half Marathon on August 11. I was signed up to run the Virginia Beach Half Marathon on September 1, but pulled out of that one, too. It has a 4 hour time limit, and I'm positive I could finish it, even if I walk the whole thing, but the stress that would put on my body, my lack of training, the intense sun exposure during the race, plus the 8 hour car ride (one way) and hotel stay...it just didn't seem like a smart decision to participate right now. This was going to be a girls getaway for me and my best girlfriend, Maggie. She is super understanding when lupus ruins things like this, and she is very supportive. Lupus can make it hard to have long-term, meaningful friendships.
I'm so thankful for Maggie!
Me and the Magster
I'm still trying to complete the 100 mile challenge for Diabetes. I'm at 70 miles as of today. I'm thankful the challenge director gave me the leeway to take longer than a month to complete the miles. I'll also have to "make up" two 15 K virtual races. Some people poo poo virtual races, but I really like them. They motivate me. I sign up and pay the entry fee, which goes to charity. I complete the miles when I can, on the course I choose (which can even be the dreadmill) and when it's completed, I hang the "bling" on my "wall of fame", which inspires me to keep going. Okay, I actually hang the bling on a quilt hanger in my foyer, but, you get the idea... If you're interested in checking out the virtual racing scene, a good place to start is the Facebook group VirtualRuns.
Look under their events tab for a complete list of available races.
Here's a link to their page: VirtualRuns
And, while I'm giving shout outs to websites, here are two more...
I LOVE RUNNING4HIM! So inspiring! Here's the link: Running4Him
and
Running For Lupus is an organization devoted to spreading lupus awareness. Here's the link: Running For Lupus
Check out their "lupus hand sign" video, too: Lupus Hand Sign
Next weekend, I'll be doing Color Me Rad with my friend David to celebrate his birthday! We're gonna have a blast and
we're gonna get DIRTY ... er ... COLORFUL!
My hubby and I will be headed to southern New Jersey in October. I had planned to run the Atlantic City Half Marathon while we're there, but because I'm not sure how soon I can resume running after surgery in September, I decided to run the 10K distance instead of the Half.
I LOVE THE OCEAN!
I hope someday I can live A LOT closer to it!
And, call me crazy, but I signed up for the "Destroy the Ring Challenge," a virtual running challenge in 2014. I'll be retracing the steps of Frodo Baggins, all the way from Hobbiton to Mount Doom; all 1779 miles worth! I will run some, bike, swim some, and maybe even crawl some, but I'll get there! As Gandalf said, "All we have to decide is what to do with the time that is given to us."
My husband is my hero! He is the most kind and caring person I have ever met. I know it must be really hard for him to see me in pain and struggling with lupus. I know he wants to fix it all, but he can't and that must be hard to accept. He is so supportive, sharing my burdens and fighting right along with me. He is my best friend and biggest blessing.
I want to say a huge thank you to all of you who pray for me and follow my posts. I appreciate you! Earlier this month, I ventured out for a run after two weeks of no running. I ran into a neighbor walking at the end of her driveway. She gave me a big smile, threw up her arms and said, "Woo hoo!" "First time in weeks," I told her. "Let's hope it continues," she said, with a thumbs up. Wow, that next half mile was easier than any I've run in a long time! Encouragement is a powerful thing! Thank you, Mary Fox! Hope I see you again soon!
I'm also really thankful for "my girls,"-- those special ladies the Lord has put in my life. I have some great friends and I couldn't get through things without you!
You know who you are, and you know I love you!
Now for a lupus update...
I have been experiencing lupus activity in my nervous system, both CNS and autonomic nervous systems. Thankfully, it's not as bad as last summer, when I couldn't drive, had terrible headaches, was using a cane to walk and had lots of cognitive problems with things like memory and speech. Right now, I'm having headaches, fevers and significant fatigue almost every day, and autonomic issues like palpitations, high resting heart rate and hypoglycemia. Click the link below to read more about how lupus can effect the nervous system.
Lupus and the Nervous System
I've also been having more frequent infections. In June, I had a sinus infection, which developed into bronchitis in July. Then, in August, I had a bladder infection which progressed to a kidney infection--not fun. All these infections required treatment with antibiotics and high dose steroid shots. I also had a bout of costochondritis, which is an inflammation of the connective membranes of the ribs and breast bone. It can cause severe pain, but thankfully is not damaging to the lungs or heart. Even so, it can make deep breathing painful, which is not good for a runner.
Here's a link to more information on costochondritis:
Mayo Clinic information on costochondritis
Medication-wise, things have changed as well. At the time of my last post, I was taking CellCept, Plaquenil, Prednisone, Elavil, and was holding Benlysta infusions. May 2013 was my one year anniversary of taking monthly IV infusions of Benlysta, the first new drug developed specifically for the treatment of lupus in 50 years. I wasn't sure the benefits of Benlysta were outweighing the side effects it caused. So, my doctor and I decided we would hold the Benlysta for a couple of treatments to try to evaluate its effectiveness.
The verdict: Benlysta was helping me MORE than I realized.
The solution: resume the treatments.
The problem: I found three lumps in my left breast earlier this year, and subsequently had mammogram and ultrasound.
I was then sent to meet with a surgeon. The insurance company wanted me to go straight to having a lumpectomy, but my surgeon argued that an MRI could possibly eliminate the need for surgery, or at least help them have a more detailed view of what was going on. After wrangling with my insurance company over their denial of covering a breast MRI, I'll be having a lumpectomy in early September. What a headache! It's likely that the lumps are cysts, fatty tissue or enlarged lymph tissue (which I also had three years ago). When I shared the situation with my lupus doctor, she forbid me going back on the Benlysta until we know for sure the lumps are not abnormal tissue. If there is something abnormal going on, the Benlysta could cause or accelerate the growth of the abnormal tissue. Which would, of course, be very bad.
So...being off of Benlysta caused an increase in my fatigue, fevers, joint pain, cognitive issues, chest pain, autonomic issues, etc., etc., etc... Since there is no Benlysta until at least October, my rheumatologist switched my CellCept to Methotrexate. CellCept had been a good medication for me, giving results with little side effects. But, taking too many immune suppressants is not the best situation. So, for now, I'm taking Plaquenil, Prednisone, Elavil and Methotrexate. The methotrexate is taken weekly by injection. My husband gives me the shots here at home. This dope is no joke:
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!
Join me in the journey!
Isa 40:27-31
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.
And until next time ... remember ...
"It just takes some time, little girl you're in the middle of the ride.
Everything (everything) will be alright,
everything (everything) will be alright (alright)."
~ "The Middle" by Jimmy Eat World
Click on the link below to listen to the song...AND DANCE AROUND!
The Middle by Jimmy Eat World
"Sadness is easier because it's surrender.
I say make time to dance alone
with one hand waving free."
~ from the film "Elizabethtown"
