Thursday, November 27, 2014

Rheumatoid Flares its Ugly Head.....No Tourney Today

Just when you think you have started to figure out this most frustrating of surprises you. I sit here typing surprised and not on the tennis court when I should be today. I should be at warm ups this very moment getting ready to play Women's or Mixed Doubles in the annual club tennis tourney. Instead I'm sitting here allowing myself a few minutes to sulk and feel sorry for myself before I finish up our Non-Traditional Thanksgiving Dinner to take to families house. (I will not get glutened this year).

Anyway, I trained really hard Monday night. I played a couple of hours on Monday in the beautiful 70 degree weather. It was just too nice to stay indoors, advantage homeshoolers. We interrupted our school day. Then my schedule rearranged that night and I decided to go work on my serve. After about an hour, in retrospect, I realize I should have stopped. Being a rheumatic it is so easy to have pains. I wasn't paying close enough attention but instead focused on the beautiful weather and the high of being out on the court. I say all the time, every time I am on the court I realize how blessed I am because it's not always going to be the case. Today is one of those moments.

So how am I handling this disappointment am I not letting this ruin my holiday with my family today? Here it is....

1. Remembering the pain I had last night. Remembering I want to avoid that tonight as I spend Thanksgiving with my family. Remembering that playing today will put me in bed tonight.
2. Remembering this isn't the only tournament out there and it isn't the last time I will be on the court. Does it suck for today, ABSOLUTELY. I've been registered and looking forward to it for a very long time. But there will be another, as I keep training and getting to know this disease and more importantly, getting to know the unpredictability of this disease, things will get easier and I will know when not to push, when to rest.When to jump on the prednisone faster. This started as muscle soreness, I expected it to stay that way. Again this disease is unpredictable. I should've jumped right on it.
3. My Daily Devotional said this: Today, Jacqui, we believe God wants you to know that ...

When you come to a wall, you can either climb it, or you can simply walk around until you find a door. (I am looking for that door).
4. Realizing that God is Sovereign and for some unknown reason I was not meant to be there today. You've heard the saying, the best laid plans.
5. Remembering to be Thankful! That is what today is all about right. Remembering how blessed we are. I may not be able to tear it up on the court today but I am not in bed in pain like I was last night and for right now that is going to have to be enough.
6. Realizing if I played it would have been selfish. I would have been putting what I want above everyone else today. Mom's just don't do that. So I'm gonna put on my big girl pants, go finish some cooking and get ready to head to my cousins house.

Happy Thanksgiving! May it be blessed!


Sunday, November 16, 2014

The Heat Patch. Does it help?

Sharing again something that I decided to try it today. The Heat Patch. I have heard it quite a bit recently, "Winter is here and it makes me hurt." I think my neck today came from sleeping on Down pillows. I am not a fan, at all. I won't dice into the allergy issues either. Again, not a fan. My daughter attended Elite Dance Convention with the recent stars from So You Think You Can Dance. Unlike previous seasons I only saw one of the dancers dance. I forgot the pack my own pillow. Again cue the horror music, the germ implications. But remember, this is me, maybe there's another me out there. We all know 200 RA patients can have 200 different things going on. All of our walks are different.
I have been having some back problems from "the fall" in January (see previous post) then I hurt it again playing tennis in the summer (on one of my "I'm tired methotrexate crash days". When it was really bothering me I would wear a patch on the court. It kept it loosened and not so tight. So as NJ took the plunge into the cold weather and this shoulder nag started to happen this morning I figured I would try it. If the cold is bothering it (and the hotel was freezing, much was without heat including my room for hours. It's only 30 degrees outside. I figured if it was the cold then getting warm would help and it did. Going to continue to try it on other places.
It makes sense. One of my pre-court rituals is putting Bengay on my knees and then putting the braces on. By the time I drive to the court it has make my knees very warn and ready to go. Remember knees are osteoarthritis.
The new annoyance I seem to have with the cold is a pain in my groin. Better known as hip pain. It's not a full flare, but it hurts. Moving luggage for two people back and forth from the 8th floor to the parking lot was a joy for a little while there. I do know next time it comes back I am heating it up for awhile to see it helps.

Tuesday, November 11, 2014

Cue the Horror Music......the child is...., Gulp.....Sick

Remember the little monkey Steve, dun..dun....dun....... the illness craze has finally caught up with my daughter. She started feeling ill a few days ago but Sunday night....the dreaded fever appeared. ILLNESS. RHEUMATISM. BIOLOGIC. IMMUNE SUPPRESANTS. "COMPROMISED". The words panic are made of. I have to admit, she rarely gets sick, and I honestly believe a week after Halloween and the sugar feast the comes with it, its not a surprise she's sick. As homeschoolers we really don't experience the sickness most of you do. It's a rare thing. Actually, first time in two years.

Of course this comes at a time when I am feeling sooo much better than I was in the last month. I have been watching my sugar intakes, except for injection days, on those days all bets are of, and back to strictly following my herbal intake, vitamins, produce intake, juice plus believe it or not (I will come back to that), and tart cherry juice. Is it possible to feel inflammation? I don't know, but I feel pretty darn good. I love it. Which really put a heavy dilemma on me this morning. Two weeks from the shot.....Humira shot. That's where I read the word compromised so much. I have a different way of viewing the whole process and nobody will change my mind. It's a more logical view. I'm all about logic. Maybe some things are mind over matter?

I was at war with myself. Wait a few more days or take it as scheduled or go beyond the two weeks and see if I get sick. When I had the leaky pen is kind of when I started to have more pain. Now I feel good at two weeks and want to keep it going. Not dying for the shot but knowing it helps. (I've learned to make it hurt less too, see previous post). To end the suspense I took it anyway and decided to go on my track record of catching a illness from my child. I am at ZERO!! She's almost 13. Here is what I am doing.

1. Lots and lots of hand washing.
2. Visualizing the spread of germs. (i.e. when I check her temperature I have an alcohol wipe I use for injections with me and immediately clean the thermometer before any other places are touched).
3. Did I mention the produce? My normal eggs this morning turned into eggs with onion, garlic, green pepper, broccoli and a little cheese. Gotta get them in anyway I can.
4. My daughters breakfast this morning was apples, oranges, and grapes. My snack will consist of the same but by that time I will have the pineapple cut and will be eating that too.
5.Green tea consumption....wayyy up for all in the house.
6. Calling Wet Ones...I have left them in her room.
7. Visualize the spread of germs....did I mention that. Here's another example. I just brought down a ginger ale cup from her room. Once I touched it I knew I could touch nothing else. Came straight downstairs without touching ANYTHING and straight to processing followed my decontamination of my hands. (At this point I think you realize I am a germaphob. This started before RA actually. Since I sing I really need my voice so getting sick isn't a great option).
8. Junk food is banished.
9. YOU ARE QUARANTINED!! I let her come downstairs to watch Gettysburg (hey homeschooling happens at anytime) and by the end of the night it was a sick zone on her end of the sofa. Back to your room! Let the disinfecting begin again.
10. Phone wipedown.....ALL THE TIME. That also goes for light switches, faucet handles, remotes, cabinet handles, etc.).
11. Lysol Wipes are my best friend. I should probably take stock in them. How bad do I wipe down (and I think I do this one regularly). When I walk up the stairs I grab one so I can do the railing. That's normal right?
12. Sit and wait. Which is really all I can do. She has a dance convention this weekend with her Company and she was really looking forward to it. We are staying across from NYC. Girls weekend. She needs to get better and I need to not get sick.

To end, the Juice Plus. I decided now that things are under control again and I am weenign from the mothotrexate if it wasn't a good time to try again. I totally believe our diet and natural sources can heal you. I hope this tripterygium wilfordii will once I find it. It's like the herb everyone has heard of but nobody knows where to get but I digress. If I can't take anymore pills (which with all the herbs its a bit overwhelming) I will open them up now and put them in a smoothies with my tart cherry juice. Let's see if I get healthier, will keep you posted.

Thursday, November 6, 2014

Herbal Supplements I Just Read About

Some of these I already knew about and take, like Boswellia and Selenium, and Tumeric. Some are new however and I plan on investigating. I'm also planning on investigating this Alakaline Diet I've read about. Not sure if there's truth behind that or not. This was a great read though and very interesting if you are interested in trying some natural remedies.

Monday, November 3, 2014


I really think about this so much. I'm only in my 40's but I have suffered quite a lot of loss over those 40 years. I never knew my grandparents on my mothers side. They all passed before she was 3. I knew my dads parents for a little while but, as an Majority of my Aunts and Uncles are gone now too. I've sang and played at far too many funerals. Including my own parents. I have a handful of relatives left. I have this wonderful ministry in music and still I wonder.......when I am gone how will I be remembered? How is this tied into my rheumatoid disease too? I'm practicing for a show on Saturday. Always a little scary as sometimes my hands just don't work. This is one of those times that is just out of my hands. It will be exactly what it is supposed to be. I have to "Let Go and Let God." I'm working on Legacy by Nichole Nordeman. Just had this moment of hit the blog thinking in the middle (not great for practice but great for the blog). As much as this disease sucks.....and it does SUCK, caps totally intended there, I realize that I am exactly where I am meant to be right now at this very moment preparing to do exactly what I'm doing. I want to be a rheumatoid warrior even when it is tough, even when the meds don't work, even when the flares are horrible and long. I want to speak of my faith that even in this I still believe God has my better good in His ultimate plan. I want to remember being in that ER with two flaring hands and two flaring shoulders reciting James over and over in my head saying "Seriously God, you want me to consider THIS all joy?" Somewhere in there I did believe it. I don't think there was ever a moment that I cursed God for the pain I endure. I don't think I ever asked God "WHY ME?" The fact is, why not me? Why should I be excluded from trials. Recently in the doctors office my daughter handed me a magazine. The cover photo was of a lady who attacked her RA just like I am doing. She is now a personal trainer. Sounds a lot like me, I'm not on the cover of a magazine but with everyone I encounter and talk to I want to be the one who say these things...."Don't give up" "Keep fighting" "Tell this disease who is boss" "Keep going" "Don't get depressed get inspired." I want my daughter to look back on my life when I am gone and say "Not even this slowed down my mom. Not even this touched her faith." Is it always easy....ABSOLUTELY NOT. I won't lie and say for a second that sometimes it can be easy. Who wants to be a cripple? But, good or be we all leave behind something. What do you want to leave behind????
James 1:2 Consider it pure joy, my brothers and sisters,[a] whenever you face trials of many kinds, 3 because you know that the testing of your faith produces perseverance. 4 Let perseverance finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, you should ask God, who gives generously to all without finding fault, and it will be given to you. 6 But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind. 7 That person should not expect to receive anything from the Lord. 8 Such a person is double minded unstable in all he does.

Saturday, November 1, 2014

Today I Won the Battle

I honestly view this disease as a battle. Sometimes I win, like today. Despite taking my Humira shot on Tuesday I have been having a little flare going on for a few days. Not major like before, but, enough for me to take pain meds and a shot of prednisone. Yesterday was no different. Makes me wonder if I should move to weekly Humira shots? So despite my RA rearing it's ugly head I told it who was boss the last few days and that is me. Yes I really do think of this disease as a battle, have I mentioned that. I played in tennis clinic yesterday for 1 1/2hours. I played in house today for another 1 1/2 hour tennis clinic and then I rode 11.50 miles at the gym and lifted weights. I am exhausted but I get an extra hour of sleep tonight. So today, RA, I win.