Sunday, February 26, 2017

RA and Altitude Changes

I feel like I'm always learning something new about this disease.

Since being diagnosed a little over three years ago I took my first trip via plane. I love to fly and so vacations plans were made. Since I normally feel pretty awesome I expected I would feel the same.

I was incorrect. On a scale of 1-10 on a normal day my pain hovers between 0-2. I can function through it even if it is nagging. After my plane ride by my pain shot to a 8-9. Thankfully I packed my prednisone and was able to control the flare. Both feet and ankles flaring while at Universal is just horrible timing. I was positive of the flare on the ride home. My foot hurt the entire time as we flew higher to avoid a storm.

The disease is always about learning. Always. I just learned that altitude changes are bad for me. Before I fly again I will be preventative and start the prednisone as soon as I get off of the plane.

Thursday, July 7, 2016

Arnicare. Seriously Arnicare.

I wish rheumatism only affected joints but sadly it does not. When I pulled my hamstring in a tennis match a friend told me to try Arnicare. I'm a believer in Icy Hot and Bengay. I opted for prednisone at the time knowing that would heal it quicker (I did some research about the NHL and hamstring injuries and I truly felt it was RA related). I finally picked up a tube and here is my personal finding.

IT'S AWESOME!! Made from the Arnica plant. You can take it orally but I would really am liking the gel. I've had this horrible shoulder pain that just keeps nagging me. I think I need to invest in a expensive pillow. Always happens starts when I'm sleeping. I've reduced pillows, I've added pillows, I've gone no pillow. Nothing has helped. Except for Arnicare! My daughter tried it and thought the same thing. It works. I gave it to my cousin at Great Adventure and she thought it helped. (Those of us from NJ cannot call it Six Flags).

I went in completely skeptical but I am now a believer. So much I won't leave the house without it.

I've used it on, my shoulder with this nagging pain, my forearm when it was sore from a tennis ball machine, my knee when I went on a tomato streak, my hamstring when it nags, and my quads when sore from tennis. It's been awesome. Not sure if everyone will respond to it but I certainly did. For $8 it's worth a shot right? I haven't been able to try it while in a full flare, but, for maintaining in remission it's really helping.

Jacqui

P.S. It's also available as a pill.

Wednesday, June 29, 2016

Can My Gut Be Causing My Rheumatoid?

This leaky gut theory keeps popping up. Today a friend posted an article from rheumroidarthritis.net and it too was questioning the relationship between Leaky Gut Syndrome and a Autoimmune Response. The following article I think has the best description of what Leaky Gut really is.





I repeat it over and over on my blog the importance I think of going gluten free and eating more natural and healthy. I incorporate tart cherry juice, tumeric, boswellia, maca for energy, and try to limit sugar (I know that isn't always easy and thankfully being celiac helps with the sweets). I've recently gone much more organic too. Omega 3 goes into my Nutriblast every morning. That was specifically named in this article but I plan on researching and finding out more.

It's worth a shot right?

Here's another link I liked. I'm going to try some and keep researching. I am a gluten free vegetarian so it's already a complicated diet.



Monday, June 27, 2016

As the Humira Weeks Go By and Remember Your Muscles Too!

When I first started taking Humira it was in addition to Methotrexate. I had done plenty of research to know the combination can kick this RA into remission. I figured I would give it a try. I remember in the first weeks my pharmacy thought they could get medication to me so I would stretch the shot a few days longer. No way. It was the first I felt normal and within a week or so I would start getting pains and I knew I needed it, and I certainly did.

After a year I was taken off methotrexate. I had been continually weening down so the plan was successful. I was also moved to every three weeks between shots. Then every month. Then every 6 weeks, now I inject every 8-9 weeks. But one thing has always been consistent every when ween, every step down. I wanted to share it with you.

In the beginning when dosing 2 weeks I had pains about a week and a half in and then I would panic. It was early, at the slightest indication I was about to flare I was ready to go.

At a month it was 3 weeks. Same thing. Not so much panic but I could handle the flare with a quick short burst of Prednisone.

At 6 weeks it was about four or five weeks. I would take the shot and resume feeling normal every time.

At 8-9 weeks it's about five weeks into. Where I am now when I pulled my hamstring during a tennis match. First time ever. I knew that even though this was a muscle it was RA related because I felt achy and in pain, especially in my shoulder and that all went away when I pulled the hammie. I used a quick prednisone treatment to stop the flare.

Now and like everytime before if I get through this little phase I can put off that shot for a few more weeks. At least a couple weeks.

And don't forget that this disease can attack your muscles too.

Thursday, May 26, 2016

The Dreaded Tiredness

It is well known that a Vitamin D deficiency is common with a Rheumatoid Disease diagnosis. I am sure that is true with anyone dealing with this disease. I think sometimes it is the most annoying side effect that I have at times. I am a active person, my daughter is a competitive dancer and tennis player. I also play USTA tennis and play on two teams.

The last month has been exceptionally rainy. I've noticed that I can't stay awake. It is a coffee filled struggle. Especially trying to get energy for practice or worse yet a match. This week we finally have sun, know what I notice? I'm not as tired. I don't need that afternoon nap. I'm getting sun.

I also take a B supplement. I can tell when I am not taking that. That also goes for not getting enough sleep and not eating right. Food is our energy source, we have to choose wisely.

Friday, May 13, 2016

Every Once In Awhile I Get A Reminder

I've been feeling great. I recently just managed to push my Humira shot to 9 weeks. Janurary to March. When I do feel greatI forget how quickly I can not feel great, for a reason or simply no reason at all.

Wednesday morning I woke up from a pain in my foot. Normally my flares goes to my hands. This one did not. I took 5 mg of prednisone and some pain meds and went to drill (tennis), as I haven't been able to play much because of the weather.

A couple hours after the drill I could barely put pressure on my foot. I decided to get more aggressive and upped my prednisone in the afternoon by another 10 mg. That seemed to help so at night I only took another 5mg. The next day I could walk well and the majority of the range of motion came back. I did take the day off from activity (besides walking in the city to go to the PA Ballet).

I immediately starting to ween myself the next day as I was feeling better. Down to 10 mg. Today I am at 5mg. It's two days later. I don't like staying on prednisone longer than necessary. I try to keep it quick. Though that isn't always possible.

I've come to realize there are many reasons for this to happen.

1. This isn't medically proven, but, I'm sticking with it. When my immune system fights off a virus I have RA symptons. I am around kids all the time. They bring a lot of germs. Maybe I caught a bug.

2. With the non-stop rain I've had here in NJ I haven't been able to get out to play tennis, nor have I hit the gym. My daughter is a competitive dancer so I've been spending a lot of time sitting at rehearsal and competitions (where I am now). Out of routine. I believe I have to move. I don't care if it's getting in a pool and walking. Movement is MAJOR for RA.

3. When my shots were 4 weeks apart I would always get a little achy and sometimes have a quick flare around 3 weeks. My doctors tells me that means I still need the medicine. So if I am at 9 weeks the time frame is roughly the same. I started to panic and take the shot, but I waited and let "Satan's Tic Tac's" do it's thing.

4. RA needs no reason! NONE. I try to remind myself not to panic. This isn't longterm, nor does it mean the disease is kicking up. I managed to play in drill two days later and I felt great again, and a little sore. I ran a lot!

Keeping a journal is so important to understanding how our bodies are dealing with this disease. I cannot encourage anyone enough.

I've been reading some interesting articles and look forward to sharing them on this blog.

#RASucks

Sunday, April 3, 2016

If Only This Disease Was Simple


I just managed to span my Humira shot to 9 weeks. I actually felt great even when I took the injection but I guess I felt it was a week over my Doctor appointed time. Oddly enough a week later I'm having some interesting symptoms. If only this disease was simple.

The weather here is crazy. A air condition warm of 80 to a heater cold of 30 has become the norm around here. Normally I don't react to weather but we are talking extremes here. Lots of rain too as we move into spring. Not a usual factor for me, but again it's extremes. I've done some serious debating with myself on whether to wait it out or take some prednisone.

A week later I seem to have a not simple day. I can't decide whether to call this pain or discomfort but I've managed to stay clear of the pain medicine and the prednisone. Pains in the small joints, one foot and one hand. The belt feeling never came. That's what I call the feeling of losing my circulation before the major flare. I'm holding fast.

I was sure to document all of this so I can remember what happened and when and see if there is any pattern to it next time I inject. Since this disease isn't simple I find it necessary to journal.

I wish this disease was simple enough that what works for me works for you. But we are all so different. "Journaling" can really help you figure out your disease.