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.

 

I don't have cancer but I am starting chemo.

For the past several months, my hands, knees, lower spine, and right hip have been very painful quite often.

So when I went to my rheumatologist appointment yesterday, he determined that my currents meds have not been slowing the progression of my rheumatoid arthritis.

It is worsening.

He decided our next step is methotrexate, a chemotherapy drug I will take once a week.

Otherwise, none of my million meds changed at all.

I am a certified chemotherapy nurse but I haven't given it in probably eight or nine years so tonight will be homework night.

I will be sitting down in my pj's with my better half to watch the Deadliest Catch marathon (because - yay!), eat GF pizza, and do all my research.

Then, tomorrow, we are both off work for the holiday, and, other than running by the pharmacy to pick up my meds and talk to my pharmacist, it will be a "no medical stuff day."

We are going to celebrate our anniversary early and have plans to do a couple of fun things that I won't be able to do anymore after the chemo starts. More details on that later. (so very excited!) =D

Then, on Saturday morning, we start the meds.

Hopefully, I won't have side effects, and it will go smoothly, but we plan to be home all day to see.

More than anything, I am praying this will work and stop (or significantly slow) the joint damage and help control this pain and fatigue.

All prayers for this process are greatly appreciated!

The Affordable Care Act. . . What. A. Mess.

First, let me say that I am a HUGE supporter of public healthcare.

By that, I absolutely do not mean socialized medicine.

I mean any program that makes healthcare more accessible to those who need it.

Medicare.

Medicaid.

Allkids.

These are all good things.

And I wanted to see an expansion in those programs because I've seen too many of my patients suffer without insurance over the years.

I firmly believe the wealthiest country in the world can - and must - do better:

However, the Affordable Care Act is a mess.

And I don't even fully understand the confounded thing.

The things I do understand because I have experienced them as a nurse at a non-profit community mental health center since the ACA passed:

- Medicaid is completely restructuring, and, among other cuts, they are paying for fewer medications each month, so the poorest patients are still suffering. As in, "Sir, would you like your anti-depressant or your cholesterol medicine this month? You are at your limit of five meds already."

- Since private insurers costs have skyrocketed, they are cutting mental health benefits, causing a large local mental health practice to have to close its doors abruptly. Patients and staff are suffering as a result.

- Private insurers are also refusing to pay for some medications that they have always covered in the past. When a nurse submits a prior authorization for a medication, the reason "stable therapy > two years" has always been sufficient because they wouldn't want to chance a patient who was doing well becoming suddenly ill again. Well, not anymore. Now, if they have decided they aren't going to cover the medication, they just aren't. End of story.

And those are just a few work examples.

On a personal level, I understand that:

- My husband's monthly cost for our family's insurance has gone up tremendously.

- Our copays for office visits and medications have increased significantly.

- Several medications now require prior authorizations (hoops to jump through) that never have before.

As a patient with chronic illness, these changes add up to substantial additional healthcare burdens for our family.

Finally, though it did not affect us, when we did our taxes this year, our sweet accountant explained to us the penalties for not having insurance and they are insane.

If you can't afford coverage, you are going to pay dearly for not being able to afford it.

Who is this helping?

All that said, I was a bit disappointed that ACA made it through the Supreme Court today.

Because there must be something in place for sure but it needs to be much better than this convoluted hot mess of a healthcare act.

Surely it isn't too late to rethink, rework, do better?

I certainly hope not.

For Clementa, Cynthia, Daniel, DePayne, Ethel, Myra, Sharonda, Susie, and Tywanza

At 6 this morning, I got in the car with my husband, half asleep, to ride with him to work and he quietly told me some horrific news.

"Nine people were killed in a church in Charleston last night."

Honestly, I am still try to process that sentence.

As days go by and more information comes out, there will be conversations about our culture and guns and racial issues and mental health questions.

They started today.

And I'm not saying they aren't important conversations or that they shouldn't be had but right now let's all just stop and think.

Nine innocent people. At church. Praying. Having bible study. Worshiping.

And one evil godless monster murdered them in their church.

I cannot imagine.

When I walk into our church, no matter how bad I feel physically or how stressed I am or what else is going on, it's like a weight is just lifted.

I just walk in and BREATHE.

I love to sing praises and pray and listen to the Word and learn and worship.

I look forward to it all week.

No matter what we are dealing with in life, it gives me such a peace.

Our minister made me laugh so hard a few weeks ago when he said he wants us leave church feeling like we could go "bear hunting with a switch."

When I leave, I do.

I'm ready to take on another week.

I'm sure they felt the same way.

Our church is our safe place to be with God and our faith family.

It's not a place of fear where we look over our shoulder.

We aren't suspicious of strangers there. In fact, we want them to come. Lots of them.

And they welcomed him.

I do not know why he did what he did.

If I'm being honest, I do not care.

I want him to pay fullest extent of the law.

And I will not write his name.

He is not worth it.

I want to remember and honor them.

The victims:

Nine innocent people at church at 9 on a Wednesday night.

I want to send all of our love and support to their devastated families and church and community.

I want them all to know that they are loved and prayed over and they we grieve for them and with them.

I want them to know that we stand beside them in their brokenness tonight.

I do not understand this.

I'm sure I never will. 

But our God is bigger is than the acts of an evil wretched man.

Clementa, Cynthia, Daniel, DePayne, Ethel, Myra, Sharonda, Susie and Tywanza are in His presence now.

And He will hold their loved ones in the palm of His hand.