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Rheumatoid Arthritis

A Glimpse

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I had my second carpal tunnel surgery 4 days ago (will cover that ordeal in a future post!) and have been recovering since. I have spent the majority of the past few days at home, sleeping or resting. I woke up in the morning when I was ready, not when my alarm clock went off. I ate when I was hungry and slept when I was tired. I became one with my couch and bed. Sure, I had painkillers prescribed by my surgeon but I didn’t need many of them. The best part of this was I had very little pain from my Rheumatoid Arthritis.

So what’s the problem? Well, this isn’t, and can’t be, my lifestyle. I have a fulltime job, 2 kids, a husband, and a home (and of course, Jungle George). I don’t usually have any time to rest during the week, aside from crawling into bed at 8pm. I definitely nap on the weekends but my RA pain doesn’t rest when I do.

I wonder how many less pills, injections, braces, and tears there would be if I won the lottery and could stay home to rest as often as I needed to. I wonder how much my quality of life would improve..how much more time, quality time, I would have to spend with my family.

Has anyone turned a glimpse like this into a reality? I’d like to hope so.

Rheumatoid Arthritis

As Good As It Gets

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Ever since I was diagnosed with Rheumatoid Arthritis, 3 years ago, I’ve had a burning question. A question that I’ve really wanted to ask but that I also really didn’t want to have answered:

“Is this as good as it’s going to get?”

Over the past 3 years I’ve been on different injectables, pills, creams, etc. Some are supposed to reduce my disease’s activity, others should take away pain.  Currently, my injectable, Orencia, seems to be working. I’m not noticing any new pain, stiffness, or swelling which means this medication should be reducing the disease activity in my body. This is a good thing. The only problem is that all of the damage done while I was waiting for a diagnosis years ago and all of the damage done a year ago when I was too sick to take any rheum meds, is just that, damage. It’s damage that I thought could be repaired. It’s damage that ,until I asked my rheumatologist that question, I thought was temporary.

During my most recent visit to my rheumatologist, at my usual 3 month follow-up, we discussed the effectiveness of Orencia and how we both thought we should give it a little more time to see what we can get out of it (I’ve had 30 weekly injections thus far). She then said, our goal right now is pain management and quality of life. Huh? That’s it? To me that sounds like giving up, so I had to ask: “Is this as good as it’s going to get?”. Is my elbow going to ever get better? Is it going to hurt for the rest of my life? Will I feel good enough to exercise one day and without reason, feel like I can barely walk from the car to my front door? Will I never sit cross-legged again because my left knee is so stiff? Will compression gloves and a knee brace be a permanent part of my bedtime attire? 

The questions poured out. I expected my doctor to sugarcoat things with lines like “we’re going to fight this”, “there are still plenty of medications we haven’t tried”, etc.  She didn’t. She said yes, my elbows would probably hurt forever. And my feet, hands, and knee probably would too. The damage was done before I was even diagnosed. 

In all honesty, her answers didn’t shock me but they definitely were a reality check. I’m 35 years old. I have a husband and two children. I have things I want to do and places I want to go. No amount of work or hope is going to change my joints but I can definitely change my mind-set. Some days are going to be hard, I’m going to need to rest, dinner will be thrown together, and that’s ok. Other days, I’m going to be dancing in the kitchen and making my children laugh hysterically while I attempt to rap. 

I’m hoping for more kitchen dances. 

Rheumatoid Arthritis

Gold Medal

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I often exclaim to my husband “Guess what?! I didn’t take any pain medication today!”. Does that mean I didn’t have any pain? Not necessarily….

Pain medications are prescribed for a very simple reason- to eliminate (or reduce) pain so you can live your life. Sure, it’s always a good plan to be on the least amount of medications possible. But shouldn’t the goal be to also be in the least amount of pain possible, with or without the use of medications? Why then do I feel like I need to prove that I can go a day without popping a pain pill? Last time I checked, there were no awards or gold medals given out to those who persevered through pain instead of just taking a prescribed aid.

I need to remember that right now I am fighting a real jerk of a disease (Rheumatoid Arthritis)…a disease that manages to disrupt so much of my life. As I wait for the big drugs to hopefully do their job (Orencia at the moment), why shouldn’t I take whatever I need to, to try to live my life to the fullest?

Starting today, my new exclamation will be “I didn’t have much pain today!”. I’ll be waiting for my gold medal.

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Rheumatoid Arthritis

Brush It Off

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To most people, these two brush handles look pretty similar. They’re both for round brushes which a lot of people, like me, use to blow dry their hair straight.

To me, someone with Rheumatoid Arthritis, the brush on the right is far superior. Why? The handle is made of this squishy gel that my swollen, achy fingers have no problem holding on to forever for the 10 minutes it takes to dry my hair.

I bought that brush years ago, way before I got diagnosed with RA (3 years ago). I now wish everything could be encased in that wonderful gel: pens, whisks, vacuum handles, heck even my toothbrush!

I would love to hear what products have made your life with Rheumatoid Arthritis a bit better!

Rheumatoid Arthritis

6

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Tonight marks my 6th Orencia injection. A little part of me expects my body to do a total 360 within minutes of the injection. I almost expect to feel the Orencia go through my body, fixing every joint, reducing all of my pain, and waking me up like a cup of coffee should. I basically expect Orencia to turn me into a superhero. And yet, it’s done nothing.

I know..be patient. Wait. It takes a few months. I’ve heard it from my doctor, my husband, the little voice in my head, and from the makers of Orencia, thanks to their timely mailing reminding me not to give up.

I’m not giving up but each day I wonder what the end goal is. Is it for me to feel 100% free of Rheumatoid Arthritis? Is that even possible? Or is it for me to just be able to function a bit better, hopefully for a long time? Are things going to get worse?

I’ll wake up tomorrow and gingerly get out of bed, secretly hoping that the Orencia has given me superhero powers over night. And maybe, soon, it actually will.

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Rheumatoid Arthritis

The goal is to be ok.

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I do a lot of googling research. I look up everything imaginable. Some of my latest searches- when is the best time to eat a banana for optimum nutritional benefits? How often should I bathe my indoor cat?

Sure I look up all of my medications and their side effects. I have a drug list saved on drugs.com. I look up what research is currently being done that will make living with Rhuematoid Arthritis just a little bit easier. But I spend a lot of my time online looking for hope. Looking for inspiration. Looking to find someone with RA who is doing ok. I don’t mean in remission. I mean someone who has a marriage and family and a full-time job. Someone who has daily pain like me. Someone who loses their hair and gets mouth sores from methotrexate, like me. Someone who takes a nap every weekend and feels guilty about it but knows that she needs it especially after a hefty methotrexate dose on Friday night.

I haven’t found that person yet. Most of what I have found is downright depressing. Google “rheumatoid arthritis” and you’ll bring up photos of hands that look painful. You’ll read that people with RA die 10-20 years earlier than those without the disease. You’ll see the medications prescribed and how dangerous their side effects are. You’ll read stories of people that can’t get out of bed, that had to leave their jobs at 30 years old.

I am in no way saying that I don’t appreciate and pray for those suffering so hard from RA. When I was diagnosed two years ago, I couldn’t walk down the stairs. I literally had to slide down on my butt like a child. I would fall asleep while getting my haircut. I couldn’t use my left arm to wash my face or hair because my elbow was locked. I was 32 years old. I got a glimpse of what RA could really do to me if I didn’t take action. And who knows? I might take all of these meds and make all of these changes and still end up far worse than I can imagine.

So what can I do? I can create hope and inspiration for myself. The first thing I’m doing is putting into action my realization (and research!) that I need to move more. Moving more will help my joints (or so WebMD says). So here’s my plan. I signed up for a 350,000 steps in March challenge via fitbit. (FYI- I was averaging about 3,000 steps a day in February.) Sure it’s only March 8th but I have managed to fit in a 3 to 5 mile walk daily. The catch? I walk in my basement. I pull up cheesy Walk Away the Pounds videos on YouTube and off I go. No one can see that sometimes I have to slow down or that I can’t always do the arm movements because my elbow is killing me. Once this weather warms up in Baltimore, I might even take my show on the road. Here’s an example of what I’ve done today:

20140308-191419.jpg I’m still working on my goal for April. I’m considering going gluten free or even giving up caffeine.

Every time I look at my fitbit summary, I feel inspired. I have hope that I can accomplish goals despite this disease. And I can only hope that my hope somehow inspires you.

Rheumatoid Arthritis

Decisions Decisions

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Short version of my relationship with Rheumatoid Arthritis: diagnosed in Dec 2011 after 3 months of being unable to use my left arm and having extreme difficulty walking, amongst other things. Immediately started on Methotrexate, added Humira in June 2012. Stayed on both drugs and aside from the crappy side effects, I was doing quite well. June 2013, I got very ill with an infection. My rheumatologist and PCP had me go off Humira and Methotrexate to try to let my immune system fight the infection (I also have Type 1 Diabetes, so my immune system is virtually nonexistent except when it wants to attack itself). Eventually I was treated with the right antibiotics and steroids but remained off of my RA meds. Surprisingly, I felt good. My rheumatologist warned me that my RA might come back with a vengeance but we both agreed that I could stay off my meds so that I would have a better chance of not getting sick over the winter and during flu season.

During my months off of my RA meds, I spent a lot of time visiting specialists to try to find out why I was so sick. One visit in particular stuck with me. I visited an oncologist (for hopefully the first and last time) and as we went through my medical history and list of medications, he paused, and asked me if my rheumatologist knew I had Type 1 Diabetes. I said of course and asked why. He said that, in his opinion, I shouldn’t be on a biologic because my immune system was so compromised. He confirmed what I had read on my own and what I was always concerned about- that my chances of getting lymphoma definitely increased with having an RA diagnosis but that they significantly increased being on Humira. I felt relieved that I was currently off the biologic and my plan was to never go back on it.

Fast forward to January of this year. My RA came back and with a venegenance. Both of my elbows are screaming in pain, my hands and wrists are constantly aching , fingers swollen..you get the point. Ibuprohen, Naproxen, compression gloves, rest, heat, ice..nothing seems to make a difference.

I saw my rheumatologist this morning and he recommended that I immediately start back on the Methotrexate and Humira. His reason being that they worked so well for me before and that we really needed to treat my RA aggressively, as it had come back strong.

All day, I have wrestled with the decision of whether to go back on my meds or not. I’m hurting, so much. My wrists and hands hurt when I shampoo my hair. They ache while I drive and the thought of having to slice up a vegetable makes me wonder if my kids really need them after all (yes, I know they do). A quick fix would be great. I know that taking the Humira injection will be horrible..ice cold and so painful. But I will feel better, possibly after the first dose. And then there’s the Methotrexate. With this one I won’t notice things getting better for about 2 months. The side effects will be awful- I’ll have intense nausea for 2 days after taking it, my hair will fall out, I’ll get mouth sores, and I’ll be more tired than I am now, if that’s even possible.

I can’t go on with this much pain and inflammation, especially since it will most likely get much worse. I have to do something. But what do I do? Is it possible to start myself back on both meds with the goal of eventually staying on as low of a dose of Methotrexate as possible? Or do I try to make it only on Methotrexate and suffer for the next two months, if not longer?