Beckie Kengle
Beckie Kengle {NOT FOR HIRE}
Recently diagnosed with advanced systemic lupus erythematosus and systemic sclerosis. I'm just a girl trying to navigate the waters of living life with multiple life-altering autoimmune diseases. This is my online journal, of sorts, (more for myself to look back on) that I'm sharing for anyone who would like to follow my journey.

I'm a wife of almost 20 years to My Loving Man who is so amazing and supportive, and a proud mama to two wonderful children (ages 17 and 11)! I manage our family-owned self-storage facility by day.

(Any pictures posted here are shot with Nikon or iPhone. I'm a Nikon girl, all the way! I shoot with the following gear...D700, 60mm f/2.8, 50mm f/1.4, 35mm f/2, 70-300mm f/4-5.6! I also love to play around with phone-ography on my iPhone SE!)

“deactivate forcefields in 3…2…1”

This morning I officially started my methotrexate treatments. I did have a dose at my rheumatologist’s office last week, but today was the first dose that I gave myself at home. While it was a little weird giving myself an injection, it wasn’t as bad as I thought it would be, though I don’t think I got it in quite the right spot. But hey, this was my first time after all.

But now starts the break down of my immune system (as if it wasn’t already totally screwed up, right?). Because methotrexate is an immune system suppressant, it won’t be long before I have little immune system left, which means that it won’t take much for me to get sick. I am not looking forward to that at all! Especially in my line of work where I deal with a good amount of the public on a daily basis. But I’m just going to have to stock up on hand sanitizer and face masks. And if you’re sick, and you try to come visit me at my house, be prepared to be turned away because I don’t want your germs in my house! Just saying! =P

So methotrexate was originally designed as a cancer drug. And in research it was found that in low doses it could help treat some autoimmune diseases like lupus, rheumatoid arthritis, juvenile dermatomyositis, sarcoidosis, psoriasis, psoriatic arthritis, and Crohn’s disease. I’m not super excited about some of its side effects though: nausea, fatigue, hair loss, increased risk of infections, fever, low white blood cell count, breakdown of the skin inside of the mouth, severe skin rashes, lymphoma, liver disease, and lung disease. Yikes!! But I’m praying that with such low doses that I won’t be getting too many of those side effects.

One day at a time, though. That is how I am doing my best to take all of this in. The pain, the fatigue, the information, the medication. Because I know that each day will be different, and that there will be good days and bad days and worse days. And I just need to take them in stride.

Photo Aug 24, 6 17 43 AM

All images owned and copyrighted by Beckie G Kengle. Do NOT copy, save, or print. For image use, please contact me at beckie@beckiegkengle.com.

 

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The Calm in My Storm

As I continue to research systemic lupus erythematosus, systemic sclerosis and mixed connective tissue disease, it gets a little more daunting with each new article or post that I find. Especially knowing that I have been going through this, undiagnosed, for about 3-4 years now (possibly longer), and seeing how a lot of the conditions that I have been recently diagnosed with are all connected to each other. Knowing that I could very likely end up with Rheumatoid Arthritis is not appealing to me at all, but it’s a very real possibility. And it scares the crap out of me knowing how debilitating it can be.

BUT…I also know who my God is! And while this is all so scary and uncertain, I know He is here to be the calm in my storm. I just need to remember this when I get low. As Pastor Rick said in his sermon at church last night “sometimes He chooses to calm the storm, and sometimes He chooses to calm the child”, honestly, I’ll take either one right now. I mean, healing would be an awesome miracle and testimony! But even just having the knowledge that He is here with me, by my side, and calming me when I get worked up about how things are going, and how they could turn out, gives me peace of mind.

We sang a song during worship last night, that literally brought tears to my eyes as I was singing it. For those who may not know, I am on our small worship team. I almost couldn’t continue singing, because I began to get choked up while singing this song, because it spoke to me. Strange how it didn’t affect me this way at all while we were practicing it, but it really struck me during our actual worship service. It’s called Great Are You Lord. I’ll type the words here and also link you the song on youtube.

Click HERE to listen to the song on youtube. (I apologize in advance to whatever ad youtube decides to play before the song)

Great Are You Lord 
words and music by Jason Ingram, Leslie Jordan, and David Leonard

You give life, You are love, You bring light to the darkness
You give hope, You restore every heart that is broken
Great are You Lord

It’s Your breath in our lungs
So we pour out our praise, we pour out our praise
It’s Your breath in our lungs
So we pour out our praise to you only

And all the earth will shout Your praise
Our hearts will cry these bones will sing, great are You Lord!

 

And with that, I will leave you with this gorgeous sunset that I captured on the way home from church last night.

Photo Aug 21, 7 46 00 PM

photo taken with my iPhone SE and edited with PicTapGo app on my phone

All images owned and copyrighted by Beckie G Kengle. Do NOT copy, save, or print. For image use, please contact me at beckie@beckiegkengle.com.

 

 

 

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Napa is beautiful! (I didn’t think to get picture of something other than my feet, though)

I had another rheumatology appointment in Napa yesterday (August 17th). I am very sad that it was the last one with my current doctor; I really liked him. (he is moving to San Jose and taking his part of the practice with him.) I was wishing today that I had the energy to drive even further each time I needed to see the rheumatologist, because I like him so much, I would go to San Jose to see him. But tomorrow I am going to call around to the surrounding areas nearest me and see if I can find a doctor closer to me that might be willing to take me on as a patient (basically, they need to take MediCal, because according to their online profiles, they are all accepting new patients), because ultimately, the drive is wiping me out physically (for obvious reasons) and financially (even in our more gas-friendly car).

waiting to see rheumatologist in Napa

So diving into the appointment, yesterday’s appointment was another difficult one. After last month’s appointment my doctor had me do some blood work in Napa before I went home. It was another very specialized test. It’s called a myositis panel. It’s checking for very specific autoantibodies. All of mine came back negative except for one. One called ribonucleoprotein. This autoantibody is associated with mixed connective tissue diseases such as systemic lupus erythematosus and systemic sclerosis (scleroderma); both of which I have! My doctor said “this does confirm the mixed connective tissue disease, and also confirms that what you’re feeling is not just in your head; that you’re not going crazy.” Which, quite honestly, there were some days that I really felt like I had (gone crazy)! He did also say, though, that my numbers were such that my disease is quite progressed and it’s going to be aggressive, and that I will need to be concerned about rheumatoid arthritis, and since I carry the gene (my mom had RA), my likelihood of getting RA will be very high. So we will be watching for those symptoms. My rheumatoid factor has remained negative up to this point, though, so that is a plus!

At my last visit, they taught me how to administer the weekly injections of the methotrexate treatment he ordered (the one that was denied by the insurance). Turns out it is less than $20 per month for this treatment, so at least it’s affordable. (off topic: I have decided to appeal their decision to deny this medication since it is something that I’ll likely need to be on for the rest of my life; we’ll see how that goes.) Anyway, back on topic, I start giving myself these injections next Wednesday. I am a little nervous as I have never had to give myself any kind of injection before. I have tested my blood sugar before (there was a brief moment a couple years ago when my primary physician thought I might have low blood sugar issues so he gave me a glucose meter), but that’s different, and quite easy. Not at all like having to stick a needle in your gut every week. I am just thankful that they’re weekly injections and not daily! Yikes!

I am still trying to process all of this. This life-changing information. There were a few days where I thought I had; where I thought “I got this”, and then as I continue my research (because I want to learn everything that I can about these diseases), my heart sinks even further. Especially when I’m connecting the dots with conditions that I already have (ie: last fall I was diagnosed with Barrett’s Esophagus and severe GERD).

But I am still trying to do my best to not let it get me down. Trying to stay positive, and just get through one day at a time. Because I know that God has a bigger plan for me in all of this. I may not know what it is just yet (and maybe I will never know), but ultimately I want His will in all of this, whatever it may be.

Until next time….

All images owned and copyrighted by Beckie G Kengle. Do NOT copy, save, or print. For image use, please contact me at beckie@beckiegkengle.com.

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It’s been ages since I’ve posted; here’s an update…

So, I know it’s been AGES since I’ve posted. I have actually been sick for a few years, and have been trying for almost as long to find a specialist who would see me. It has been a battle of finding someone who was taking new patients as well as was accepting my insurance.

First of all, a couple of years ago, my primary physician did some routine blood work that showed that I had a high ANA level. (for those who don’t know what that means, it is a marker for autoimmune diseases) So ever since that first blood work came back, he’s been trying to find me a rheumatologist. I live in California, and apparently there aren’t a whole lot of them here (who’d have thunk it, right?). They sent my file to nearly all of them and waited. And waited. All the while rerunning my ANA panel every couple of months to monitor my numbers.

It had been a struggle. There were offices that were accepting my insurance, but weren’t currently accepting new patients, or were accepting new patients but not accepting my insurance. And it went on like this for over a year. Until finally we got a call back from Stanford Medical Center. Hallelujah!! They schedule my appointment (they’re pretty booked, so it’s about 4 months out, making my appointment for February of this year), and I wait. 3 weeks before the appointment, they call me and ask me what insurance I have because my doc’s office never sent that information over. I tell them, and they say “Oh, we don’t take that kind of insurance.” I literally started crying. We’ve just wasted 4 months! She apologizes and hangs up. I call my doctor’s office and let the referral gal know, and we start ALL over in our search.

Fast forward a couple of months, the last week of June to be exact, and I get a call from a rheumatology office down in Napa, and they have my file and would like to schedule an appointment for a consult, could I possibly come in the next day? Whoa!! I apologize because I’m caught off guard, and tell her that I’m unable to take the day off work that quickly, so she schedules my appointment for two weeks out. While I’m on the phone, I verify that they DO in fact accept my insurance, praise Jesus!

Consult appointment day is here, and my awesome friend makes the drive with me (Napa is approximately 3-4 hours away from where I live depending on traffic and road conditions)! I am nervous, excited, and even a little bit scared. We get to the appointment and meet the doctor, who I really like by the way. To get to know me, and my symptoms, he is asking me all sorts of questions, and looking at (the very small amount of stuff) the information that my doctor sent over (can you believe that my doctor didn’t even send over my recent labs??). He orders a bunch of lab work and X-rays of his own and sets up an appointment for a follow up in 2 weeks. In the mean time, he gives me an idea of what he thinks I might have. But he wants to wait for labs to come back to give me a definitive answer.

During these two weeks, I am doing research on the two autoimmune diseases that he told me about that he thinks I might have. Neither of them sound very pleasant. They are both life-long diseases, but both are treatable. Finally I have to stop because there’s no use getting worked up when I don’t have the answers yet.

Two week follow up day is here (which was last Wednesday, July 20th), and now My Loving Man makes the trip with me. He likes my doctor, too. After checking in with how I’m feeling (I had forgotten to mention that he prescribed me some prednisone for some of the inflammation I have been having because of some arthritis), and seeing that I am doing a bit better, he tells me his diagnosis. Lupus and fibromyalgia with underlying systemic sclerosis. <bomb drops> Lupus was one of the diseases he’d mentioned at the previous appointment, so I was half expecting that, but I was not expecting the fibro diagnosis.

I have done A LOT of research on my own over the last year, so in a way, I wasn’t surprised by the lupus or systemic sclerosis (especially the systemic sclerosis, as that showed up over a year ago in some blood work, but my primary physician wrote it off as a false positive). Most of my symptoms fit the systemic sclerosis. I was having a little harder time making the lupus fit, as my symptoms aren’t as obvious as the systemic sclerosis, but it does still fit.

I am still working on processing these diagnoses; the idea that I have life-long diseases that affect my livelihood, my day-to-day and how I’ll feel for the rest of my life, it’s still stressful and gut-wrenching to say the least . I have had a few days of feeling very depressed (it runs in my family pretty deep). But I am trying not to let it bring me down.

Now we work on finding the right treatment (the original treatment pan he wanted to do, the insurance denied it). So I go back for another follow up on August 17th. It will actually be my last appointment with him, as he is moving to San Jose to open up his own practice, so I will be seeing his associate after that. I am hoping I like her as much as I like him.

If you’ve made it this far, thank you. I appreciate you! I plan on trying to keep up with journaling (if you can call it that) about my illness adventures here on this old photography blog. I’ll try to still post photography stuff as well, but who knows since I’ve not been so great about it in the past. =P

So for now, here are a couple iphone snappies. (a selfie-which I’m not sure I’ve ever posted on here but depicts how I’m feeling right about now; a cool artwork piece that was edited using an app called Prisma, and then an adorable picture of Miss Ruby Tuesday that’s sure to make you smile!)

Beckie G Kengle

Prisma App Art

Ruby Tuesday Makes You Smile

(All images and videos owned and copyrighted by Beckie Kengle. Please do NOT copy, save or print. For image use, please contact Beckie via email at beckie[at]beckiegkengle[dot]com)

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Meet our newest family member…Ruby Tuesday

Meet Miss Ruby Tuesday!

On Valentine’s Day, we met this sweet girl at an adoption event in front of PetSmart put on by Butte Humane Society. We instantly fell in love. She is a Chihuahua mix (we think her other breed might be a mini pinscher?). We got to bring her home about a week or so later, and she is the perfect addition to our family. Our other 2 dogs seem to enjoy having her around, too.

She has an overbite, so her cute little tongue is always hanging out! We just love her to pieces!

All images owned and copyrighted by Beckie G Kengle. Do NOT copy, save, or print. For image use, please contact me at beckie@beckiegkengle.com.

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