New Diagnoses, New Lessons, and New Work

I've said before how much I love this book but, again, I encourage everyone to read it, particularly anyone facing health challenges.

I recently had a diagnosis of ankylosing spondylitis added to my list of autoimmune ailments and, though that was expected, it still rattled me a bit.

I picked up my copy of Raw Faith, which Kasey wrote about her facing non-Hodgkin's lymphoma, and have been rereading it.

In chapter 11, one of her journal entries really spoke to my heart and resonated with me in a new way:

"The longer I sit with Lord in this season of cancer, the more I pray for healing and a miracle, the more I understand one thing: I do not need the Lord to heal me.

What I need is the faith to trust him no matter what happens.

In this, I have begun to realize that great faith is borne in the great unknowns of life."

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I started this blog entry over a week ago, after my doctor made me aware of my new diagnosis on November 6th and had saved up to the line above.

Things got busy though, with me trying to make some big decisions about my job, and reducing stress, and what would be best for our family, and praying for the right answers.

I had several interviews set up but ultimately my husband and I were both really hoping that a specific position with a great schedule for me and more time at home that is literally five minutes from my house would work out.

All seemed to be going great when I got a scary call to come back in because the facility is so small that it gives its own drug screens and the one it gave me was defective. 

Per their policy, my application was to be discarded, end of discussion.

However, my future boss said she just knew it wasn't correct and decided to call me back in to to redo it anyway.

Of course, the repeat was fine.

In my heart and down to my toes, I KNOW that is one of those examples of God making things happen that are part of His plan and I am so so thankful.

I will miss my sweet work friends and my patients at my old job but I am so ready for less pressure (and therefore less health problems) and more time with my family.

I am so ready and thankful for this new season. 

Arriving Fashionably Late (as always) for Invisible Illness Awareness Week

Invisible Illness Awareness Week ended yesterday, but our lives have been in a state of chaos recently, with a child ill, my husband dealing with an extremely demanding work schedule, and other assorted issues, so I totally missed it until today.

However, now I am aware of it, and I do feel lead to share some thoughts on my experience living with an "invisible" chronic illness, which is debilitating more often than I'd like to think about.

First, to explain briefly the idea of an "invisible" illness.

Many illnesses, like Lupus, Fibromyalgia, Rheumatoid Arthritis, Dysautonomia, Gastroparesis, Chronic Fatigue Syndrome, and countless others, have severe symptoms that can be life-altering, and even life-threatening, but, externally, the person suffering from the illness may look fine.

For example, even on a really bad day when I get up in severe pain, if I take all of my medication (17 pills in the morning), take a hot shower, stretch, put on "my face", style my hair, and force myself out the door, I probably look okay, other than moving slow.

Because of this, people who do not understand invisible illness tend to think that these illnesses are less serious than they actually are.

For me, at least, dealing with RA has been a beast since the beginning.

Simply having it is unsettling but what is even more troubling is how unpredictable it is.

For example, on my latest treatment, though I still had plenty of areas of pain, including my knees, I thought the burning pain in them that used to bother me so, was gone, as I had not experienced it in some time.

Suddenly, on Saturday, it came back as a searing pain, worse than I've had before.

On Sunday, it was growing stronger and again this morning it seemed to be worsening still.

Needless to say, today was an unscheduled high dose steroid day.

This is in addition to my hands having a mini-flare and my spine hurting at a 6/10 right now and whatever else decides to stage a rebellion this week.

In addition to the pain, RA comes with crippling fatigue. I've never experienced anything like it before. I liken it to literally hitting a wall. When it hits, I cannot go on.

Due to my inability to predict which of my joints will be affected at what time or how severe a flare will be or how long it will last or when overwhelming fatigue will strike, I could receive things like disabled parking and other services for people living with disabilities, but I, like most people, will wait until I absolutely have to utilize those things.

However, there are many people with similar diagnosis who already do have to use those services and often they are judged and treated unkindly because they look "well" though they are quite ill.

Hence, we have Invisible Illness Awareness Week, to educate others by sharing what we actually experience in our day to day lives.

Though it is difficult to deal with chronic illness, I am tremendously blessed. I have a wonderful, supportive husband, a loving family, caring friends, an excellent rheumatologist, and an understanding employer.

Of course I wish this disease wasn't with me but I have faith that God will bring me through it and use it for good somehow.

He always does.

Looking Forward To A Lovely (TIU) Fall

It's been a while since my last post, thanks to a nasty flare that was followed by a few really busy weeks.

So, to get caught up quickly, my RA will always have good and bad days but, overall, on my current meds I'm doing pretty well.

My pain is usually manageable, I got through last week at work with no sick time and my chemo side effects have fallen into a predictable pattern (a little rough on Saturday, worse on Sunday morning, then okay) now.

Also, over the past several months, I've been working on losing the substantial amount of weight that I gained during the two years I was on high dose prednisone therapy.

I've lost about 30 pounds but have another 35 pounds I want to lose, back to my pre-diagnosis weight.

Even more than for my appearance, getting back to my natural weight will take a lot of strain off my joints.

I have wanted the Tone It Up Plan for over a year, as it is a weight loss plan, but also is a gluten free, anti-inflammatory diet that focuses on the foods and exercises that my doctor already recommends for my RA.

So a win-win.

But, for a "membership", which mostly just is a PDF of their plan, and an occasional update, they charge $199. For. A. PDF. =O 

And that is just too much.

However, subscribing to their email list, following them on Instagram, and using their app, I've gotten lots of useful information for free.

Just not the plan.

And I hadn't expected to ever get it. 

BUT:

This weekend I learned that a friend of mine had the TIU plan and the updates and she learned that I had several e-books she really wanted.

Totally out of the blue and by accident.

Trade time anyone?

So last night this vision of loveliness appeared in my inbox:

And I've spent this evening looking through the startup information.

I've gotten enough put together to begin tomorrow even though I have lots more to read and will get it all printed out and put in a binder next week:

The nutrition part of the plan is on point for me and I can do it with no changes.

The exercise portion I will be modifying.

I will be doing 30 minute walks for cardio and yoga for strengthening. And that's it.

And, on sick days, I'll stick with the diet but exercise will be walking to the kitchen and back.

Such is life with RA. ;)

Still I am super stoked to start.

And for the next several days I'll also be geeking out and making goal lists and vision boards and getting my dork on in general.

Awesome it will be. =D

Happy Labor Day, y'all!

MTX Treatment #7

After last week was a total bear, I came home Friday night and took my weekly Methotrexate.

And then my energy level took a dive off a cliff:

I hibernated most of the weekend, was pretty sickly, missed church on Sunday, and was so weak by late Sunday night that I found myself in ER, only to be assigned Nursezilla, the WORST IV stick in the land:

After some testing, I was found to be dehydrated and anemic. 

I was given tons of fluids and IV iron, patched up, and sent home.

I rested through the day on Monday and then got myself back to work today.

Though I'm still sluggish, I'm also stubborn and glad to be back:

Needless, Methotrexate Round #7 was entirely too exciting.

The side effects so far: anemia, nausea and vomiting, fatigue, hair loss.

The kicker is that the longer I take it, the longer the side effects seem to last. 

For example, the nausea comes and goes all week, more or less, now.

However, I am also noticing that the strength in my hands is coming back, which is a huge gain, especially for a nurse who gives shots, draws blood, and does paperwork all day everyday.

Sooooo, at least to some extent, IT'S WORKING!!!! =D

As such, I am committed to riding this out and hoping the side effects improve, at least to the point of not landing me in the ER.

And, according to my rheumatologist, they should become more tolerable over time.

And, again I say, Hallelujah, it's working!

I just have to tough out the rough parts of it for awhile.

Taming the Beast

Last month, as I mentioned in a previous post, my primary diagnosis was changed to RA.

Because my autoimmune symptoms had gotten significantly worse, we also started a much more aggressive course of treatment.

This course of treatment takes about three months to work if it's going to.

In the meantime, the plan was to continue my other meds and manage symptoms.

And I agreed with this plan.

What I didn't know was that, while we are waiting to see if the treatment is going to work, the disease process would explode this month.

Really.

I have tried not to be a complainer and have often taken this approach:

I now realize that people who care about me really want to know what is going on and they can't be supportive or check in or pray during this unpleasant time if I'm not forthcoming about the situation.

Also, I'm afraid it may seem like I'm being anti-social or unfriendly at times, when, in actuality, my body has just gone on strike.

So, now, for a report of what has really been going on since the start of chemo:

I have had nasty pain and stiffness in both of my hands that is really bothersome. They tend to get worse through the day and I call them my bum hands because I have the worst time opening things and I am even more clumsy than I used to be (and that's really saying something). 

By nighttime, they often throb.

Thankfully, I can still give injections, write my nurse's notes (with my special fat pen), and type, even though those things are really uncomfortable some days.

Worse than my hands is the burning in my knees. Often they burn like they are on fire all day and the pain is severe. Medication helps the discomfort but it does not come close to stopping it right now:

Finally, in the past month, the pain I have in my lower spine that radiates into my right hip has also gone from moderate to severe and uncontrolled by medication.

I have other joints that occasionally give me problems but those are the areas that are a daily major issue right now in terms of pain.

There have been several times in the past month that it has been bad enough that I have considered the emergency room for pain relief and I normally wouldn't even entertain that idea:

With the pain comes stiffness all over my body that tends to make me walk like one of Frankenstein's relatives. It is really unpleasant. :(

Another major issue that has arisen is the total and complete exhaustion that comes with this level of flare.

I have had at least one sick day per week for the past four weeks at work.

Thankfully, my employer is very understanding, but, still, I hate this.

Finally, I am extremely heat intolerant so the summer temperatures are not agreeing with me at all right now.

I've been running fever intermittently pretty much every day.

Yuck.  

Please send lots of prayers and good vibes this way that this flare will lift.

Pray that I can finish out this week at work, enjoy taking Sara to the Motion conference this weekend without getting sick, and for wisdom for my doctor at my visit on Monday.

I know there has to be a combination of meds that WILL work and I believe we WILL find it.

I just hope it is soon.

Fingers and toes crossed.

My Bucket List: First Edition (Because Pastor Chris said we should all have one and I believe him =D)

Our "Dream Again" series at church started two weeks ago and it is so good.

If you haven't been following, you can catch up here:

https://www.churchofthehighlands.com

Last week, he suggested we all start keeping our own Bucket List of things we want to do in our lives.

While I have plenty of things I want to do and see, I've never written them down.

I'm sure this will have many additions as I remember other things but it's a start:

My Bucket List 7.15.15

1. Visit Italy and see the Vatican, hopefully while Pope Francis is still there.

2. The Wizarding World Of Harry Potter in Orlando because duh. ;)

3. See the Northern Lights

4. Participate in at least one Mission Bulgaria trip.

5. Learn to play guitar well.

6. See Les Mis on Broadway.

7. Visit Ireland and England.

8. See the Eiffel Tower.

9. Alaska!

10. Take my better half to Las Vegas to get remarried by Elvis, stay at the Golden Nugget to play on the water slide through the shark tank, and check out some shows. 

11. Write my own book - even if only three people read it.

12. Serve the church in youth or women's ministry. I felt called to when I was much younger and still feel that there is something for me to do there. It will come in God's time.

13. San Francisco

14. Washington DC

15. Machu Pichu

16. See my Saints play at the Superdome (hopefully more than once!)

17. See my Bo Sox at Fenway.

18. Greece

19. Train travel through Canada

20. Glacier National Park, Montana.

21. Celebrate my 65th Birthday with the stunning lavender hair I can't have right now (real jobs and all that stuff) and beautiful new tattoo. The grandchildren will be so proud. ;)

If you haven't give yours any thought, now is a great time!

Methotrexate Day 1

Today was the start of my new treatment adventure (Happy Independence Day to us!) and, so far, it has gone as well as I could have possibly hoped.

I've had some nausea, flu-like body pain, and fatigue that caused me to take a five hour coma-level nap (in all fairness, most of my sleep is coma-level. The tornado sirens are literally across the street from us and I can sleep through them. =O).

None of the super scary stuff though. 

My awesome husband has been home with me all day and taking good care of me. 

I am so blessed.

It is my understanding that the day after - known as "methotrexate hangover day" - can be rough and I HAVE to work Monday so, as much as I hate it, we are going to stay home from church tomorrow to rest and watch online instead.

I am so glad we do have online service so we don't have to miss entirely though!

Sunday is my very favorite.

Crossing fingers and toes that all continues to be well and trusting that it will.