What does it mean when I say I'm feeling "better?"
Today was my first time really running in 6 months!
#LupusHandSign
Today is a good day. I've had a bunch of rough ones lately, but today is pretty good! I'm feeling better than I have been for a while. It's been six months since I could even entertain the IDEA of going for a real run. But, this morning it was cool (in the upper 40's), and a bit foggy, and my body and brain agreed that we could try it, because we would have the rest of the day to recuperate.
People with chronic illnesses use the word "better" cautiously. Sometimes we say, "I'm feeling better," and people hear, "I'm all better," which they translate to mean, "I'm not sick anymore." Oh how we (those with chronic diseases) wish that were true!
A chronic illness is one which persists for a long time, often a lifetime. A chronic illness can be managed, but not cured, and often becomes progressively worse. The opposite of chronic is acute. For example, COPD (Chronic Obstructive Pulmonary Disease) is a chronic lung problem, like having bronchitis all the time. Acute bronchitis is the bronchitis most of us develop after a sinus infection. We take antibiotics and use inhalers and after time the bronchitis goes away. Chronic illnesses do not go away. They may improve for a time, sometimes a long time, or they may be serious for a long time. Chronic illnesses may have periods of flares and periods of low disease activity.
So, on days when I'm feeling "better" I still have pain. I still have headaches, dizziness and cognitive difficulties. I still fight fatigue. The difference is that I am able to fight through these symptoms and function on a higher level than times when I'm feeling "not so good."
SERIOUSLY.
I KNOW people mean well when they see me out--at the grocery store or church or running errands--and they say, "You look great! I'm so glad you're better." They ask me how I'm doing, and I try to give the generic, vague "Oh, things could be worse," answer, and most will say, "Well, you look good." Which, in my ears can sometimes sound like, "Suck it up already! Don't be so negative. I had a bad cold last week and now I'm fine. You're just not trying hard enough. Get some sun. My cousin's mother-in-law's neighbor had what you have and she took vitamin xyz and now she's cured...."
OKAY, that was a bit severe...
There is SUCH a lack of understanding about lupus. While most folks have heard of it, they really don't know what it is, what it can do to a body, and how ONGOING it is.
So, usually I just downplay how I'm really feeling. Yes, here I am at the grocery store this morning...and that means I'll be in bed this afternoon. Yes, you did see me running in our neighborhood this morning. I spent the afternoon sleeping, and then my husband bought us take out for supper, but I'm thankful that I could force myself to exercise today, because it IS good for me and I know it. Yes, I went to that concert on Friday night that lasted until midnight...see you Monday.
It's really true...just doing the ordinary, everyday things takes almost all the energy I have. So, a little bit of extra effort for a concert, special church event, or even (blah) medical tests and appointments is EXHAUSTING. And a lot of extra effort to conduct a choir performance, travel, or host a holiday meal can mean days in bed...or a lupus flare...which could mean weeks in bed. It's such a balancing act. It's like the guy at the circus who spins the plates on sticks. He's always frantically checking them, spinning them, balancing them...and sometimes they all fall.
Yes, I do get frustrated with myself when friends, those my age and those who are "older" (some of them even more than twice my age,) can be involved in many activities and go, go, go with seemingly endless energy. I DREAM OF BEING YOU! And some people don't understand why I can't be you.
Of course, I'm also always on guard and trying to gauge the "germ potential" for every social situation. Church services, stores, restaurants, parties, concerts, sporting events, family gatherings, choir rehearsals...all provide a situation where I could easily "catch" something. It doesn't even have to be a "serious" something. I once asked a friend who I was to meet for lunch later in the day if she was feeling well. "I'm fine. I just have a cold." Our lunch date was postponed. For a person with an immune system gone haywire, and suppressed by several medications, a simple cold can escalate into pneumonia in just a couple of days.
Anyway...I guess what I'm trying to relay is that lupus can be isolating, for lots of reasons.
Lupus can make you feel less than, unworthy, alone, misunderstood...it can make you feel down on yourself.
You must be careful how you talk to yourself...because you're listening...
Then, of course, there are those who assume that if I'm able to run then I MUST be cured. (Let me say that when I say "run" I mean I go faster than walking, but slower than just about every other runner. I'm okay with that pace.)
I'm really blessed that my husband has a good job and can provide financially for our family. That allows me to work for nothing...i.e. volunteer. I do work as a musician, but not full-time, and not all the time, and usually not for money. If I had to be working while living with lupus, even a regular part-time job, I wouldn't be running. I also don't have children, so there isn't that demand on my time and energy. If I had kids to care for while living with lupus, I doubt I'd be running.
[I HATE IT WHEN PEOPLE TRY TO DEFINE THEMSELVES--AND ME--BY WHAT WE "DO" INSTEAD OF WHO WE ARE...but that's another blog post!]
NOT ALL PEOPLE WITH LUPUS ARE THEM SAME! Some lupus warriors ARE working, caring for children AND running. But I can't speak about their experience; I can only share my own life and feelings.
Running is a spiritual experience for me. More than any other reason, that's why I want to keep doing it. I crave that time. I do listen to my body (and I mostly listen to my doctors) about when I can and can't go.
So...I went running today. It was great. I was surprised that I could run some nice intervals. I walked some, too, and that's fine. Now I'm really tired, and hopefully I'll sleep well tonight. And maybe I'll have the energy to go again tomorrow...but my joints DO still hurt, and I DID have to fight some dizziness and lung pain while running, and I feel like a bus hit me...but I'm smiling and it's a good day, one where I'm feeling "better."
March was kind of rough health-wise. I saw my PCP on a Friday for a sinus infection and was given a strong antibiotic. That night, I developed gastroenteritis. Saturday my hubby had me in the emergency room with dehydration and stomach pain and nausea. They also discovered I had a UTI. Monday night I was back in the emergency room (with my best friend Maggie) as the sinus infection had progressed to bronchitis, which had become asthmatic, and my dehydration was more severe. --This is an excellent example of how quickly infections can get out of hand in lupus patients.-- I spent 9 days in bed, eating only Campbell's chicken soup and Popsicles. I don't think I ever want to eat Campbell's chicken soup again.
This illness brought on a lupus flare, which necessitated a high dose steroid shot. I had increased chest pain (costochondritis--inflammation of the juncture of the breast bone and ribs), fevers, rashes, mouth sores, worsening raynaud's, very dry eyes and mouth, tachycardia, worsening joint pain, dizziness, etc.
Sinus infection face, and a lovely left eye, which is where the infection seemed to settle.
RAYNAUD'S FEET
My feet are shiny because they are wet. I was soaking them in warm water to try to bring the blood flow back to them. The white spots are where the blood flow has been cut off. The blue spots are where the blood flow has been cut off for a time. The red spots are increased blood flow returning to my feet. Yes, it's painful.
Mouth sore, located right behind my top front teeth. Eventually the entire roof of my mouth became red and inflamed, and the skin sloughed off. I also get sores in my nose. Yes, they're painful.
MALAR RASHES
This rash also occurs across my upper chest/neck at times.
Bruise from steroid shot...ouch!
My kitties were excellent nurses while I was stuck in bed.
Sometimes you have to tell the world how you really feel!
In late March, I also had a very scary low blood sugar incident. I shared in my last post that my pancreas is producing way too much insulin at times (hyperinsulinemia.) That causes my blood sugar to rapidly drop below normal, which is called hypoglycemia. My lowest reading before the "scary" incident was 41, and that was pretty scary! Getting that low causes me to shake, get irritated, look very pale, be nauseated, be unable to concentrate or have a conversation, be dizzy, and makes my heart race (140+ beats per minutes). On a recent evening, I began to feel very ill. I was SO nauseated, my body ached BADLY all over, I had a horrible headache and I couldn't see straight. I was laying on the bed in ball moaning. Then, I started crying and COULD NOT CONTROL MY EMOTIONS AT ALL. I told my husband, "I feel like death." Somehow, I thought to check my blood sugar and it was 21! I'm amazed I hadn't passed out by that point. My heart rate was through the roof. My husband said, "Get in the car," but I did not want to go to the hospital. I just didn't think I could handle the pokes and prods, etc. Immediately I drank some juice and ate peanut butter crackers. It took almost an hour to get the level up to a reading in the normal range. Then it dropped again, but not as low. Finally, it stabilized. I felt like I'd run a marathon while being chased by a hungry lion.
After seeing my endocrinologist, I now know that an episode like that means a trip to the ER. A sugar reading that low can take a couple of weeks to fully recover from. I felt shaky and just "unsteady" for about 8 days afterward. The doctor doubled the dose of metformin, the medication we are trying to help my body better break down carbohydrates and use insulin. I'm not diabetic. I don't have high blood sugar readings. We also now have a glucogen pen for emergency situations where I might be unable to swallow something. The endocrinologist also suggested that I begin wearing a continuous glucose monitor, which would alert me if my blood sugar is rapidly falling, and would save me many finger sticks (for using a glucose meter.) We'll see if the insurance company will approve the CGM. I really hope so. I think it would be very helpful and remove some anxiety I have about my blood sugar dropping while I'm running or driving or some other activity where passing out would be very bad!
I LOVE this doctor, though. She is very personable and down to earth. She is SMART! She made a connection between the very low sugar incident and the start of a lupus flare. She thinks either the low sugar incident was an indicator that a flare was coming or the low sugar incident was a result of the flare. She is knowledgeable about lupus, which is NOT always the case among doctors who don't specialize in treating lupus.
I'll be having my gall bladder (or as a friend affectionately calls it, the "gall beast") removed in early May. I had been going to have it out last October, but decided to see if I could manage the flare ups with diet changes. That doesn't seem to be the case, so out it comes. Hopefully there won't be any complications or infections, and lupus will behave!
Then, in June, it will be time for another round of Rituxan infusions. Although I'm not looking forward to how I'll feel for several weeks, I am eager to see if the medication continues to provide the benefits I think I've seen since my first infusions--mainly reduction in joint pain and rashes.
Through everything that's been going on, I know I've had many people praying for me. Just knowing that helps me get through, as well as the answers God gives and the strength He provides.
I love it when God shows me He is with me, even in the "little things." After being sick, I attempted to go to the grocery store. Part-way through my shopping list, it was evident that I was trying to do too much, too soon. I was standing in an aisle, holding on to my cart and trying not cry. I was seriously thinking of abandoning my cart and going home. I prayed, "Lord, PLEASE help me finish this!" Immediately, a Tom Petty song came on the store sound system, which made me smile. Those of you who know me know that Tom Petty and the Heartbreakers are my all-time favorite band.
Coincidence? NO WAY. I grabbed the milk, juice and coffee creamer, got through the check out line and made it to the car singing, "Now I'm free...free falling."
Click the link to listen to the song.
I had the opportunity to hear Michael W. Smith play live last month. It was fantastic. He has a new album coming out soon, and played a couple of songs that will be on it. One of them, "Christ Be All Around Me," which was written by his son-in-law, really stuck with me. So, I'll leave you with this song...it's my prayer for me...and you.
"Christ Be All Around Me" performed by Michael W. Smith and Leeland Mooring
Click the link to listen to the song.
Christ Be All Around
By Leslie Jordan, David Leonard, Leeland Mooring, Jack Mooring
As I rise, strength of God
Go before, lift me up
As I wake, eyes of God
Look upon, be my sight
As I wait, heart of God
Satisfy and sustain
As I hear, voice of God
Lead me on, be my guide
Be my guide
Above and below me
Before and behind me
In every eye that sees me
Christ be all around me
And as I go, Hand of God
My defense, by my side
And as I rest, breath of God
Fall upon, bring me peace
Bring me peace
Your life, Your death
Your blood was shed
For every moment
Every moment
HUGE SHOUT OUT TO MY CIRCLE OF FRIENDS.
THANKS FOR BEING THERE FOR ME.
LOVE YOU GUYS!
Join me in the journey...
I'm planning to attempt to run the Capital City Quarter Marathon in Columbus, OH, on May 3. I had wanted to do the Half (which I did last year), but with only three weeks until race day, I need to be smart and safe. Pray for me!
P.S. Please check out this exciting project my lupus warrior friend Melanie is working on:
Click on the link to view the project
Ps 119:32
I run in the path of Your commands,
for You have set my heart free.
