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!