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Hope Rheumatoid Arthritis

A much needed dose of hope

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Today I *finally* saw my new rheumatologist (in case you missed it, my previous doctor retired in November, coincidentally when one of my worst flares decided to start). I had such high expectations for her. The funny thing is, they weren’t concrete expectations- like a good listener, researched focused, etc. I was just looking forward to seeing someone who understood my disease and could maybe help me. That simple.

She started the visit about 30 minutes late. Continue reading

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Rheumatoid Arthritis

The Gupta Programme

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in now way influenced by the company.

The Gupta Programme is a three month program that includes a variety of materials. The program is designed for patients with ME/CFS, Fibromyalgia, and/or MCS. I can attest to how it helps with Fibromyalgia and with the pain and stress my other chronic illnesses cause me.

Overall, I found the program to be all encompassing- it allows learners of all types to get the most out of this program. The program includes the following: Continue reading

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Hope Rheumatoid Arthritis

Hopeful not hopeless

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I’m in the midst of a massive flare. A flare that just keeps coming, no breaks, and to me, no end in sight.

With a root canal scheduled for this past Thursday, I decided to skip my methotrexate the weekend before (I have now been off of it since the beginning of June). Dental work is tricky and with all of the bacteria involved, I didn’t think the risk was worth it.

That root canal involved three hours in the dentist chair and I left with only 90% complete. I have a very considerate dentist who propped my mouth open for me but just having it open that long threw my jaw into a flare. It hurts tremendously and I’ve limited myself to soft foods for the past 4 days.

So this weekend, I had to skip methotrexate, again, since I won’t be back to the dentist until a week from now (which means, you guessed it, no methotrexate next weekend either).

My knee had progressed so well in PT that I really saw the light at the end of the tunnel. I had a new med plan- I have my first Simponi Aria infusion later this week and felt that I was days away from starting back at the gym.

That light is so dim now, I can barely see it. But I’m going to focus on it, make that light at the end of the tunnel a bit brighter.


A little over four years ago, I couldn’t walk. I can walk today with a slight, yet endearing limp (or swagger you may say). Four years ago, I couldn’t reach my face with my left arm because my elbow was locked. Today, I was able to knit. Four years ago I was hopeless. Although it may seem like it today, I’m not hopeless, I’m hopeful. I’m hopeful that my new meds will work (in time, of course). I’m hopeful that I’m going to return to the gym, stronger than ever. And I’m hopeful because I have such a strong community of supporters near and far. And I won’t let them down.

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Hope Rheumatoid Arthritis

The good thing about RA!

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It’s May which means it’s Arthritis Awareness Month. I’m starting the month hungover from methotrexate and suffering one of the worst flares I’ve ever experienced. Last week I had asked you to share with me how Autoimmune Arthritis has made your life better. Better? Yes, better. Would I wish RA on my worst enemy? Never! Am I grateful to have this disease? Heck no. But I have to find reasons for things, it’s who I am. And I have to stay positive. At least a teeny tiny bit. If I let myself get sucked up in the emotions of this disease, the hopelessness of this disease, the pain of this disease, I fear I will fall into a deep, dark place that will completely ruin my life.

So this month, I want to share how arthritis has change your view of people with Chronic Illness. How it’s changed how much you value those quiet moments with your family. How much you appreciate the beautiful sunrise and sunset.

If you haven’t already, please take my one question survey or even respond in the comments below. I’m happy to link your quote to your social media/blog account as well. Click here!

I have much more empathy for others now.

Today’s author’s blog is http://www.curlysuereview.com/ and you can follow her on Twitter here.

 

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Rheumatoid Arthritis Type 1 Diabetes

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In hopes of finding something, that’s not in pill form, to help combat the pain and fatigue from my Rheumatoid Arthritis, I checked out a book. A bunch of books actually. I’ve been walking by the stack of them in my kitchen for the past few days, not really knowing where to start. I mean, obviously, I could do it the old fashioned way- pick up a book, open it, start reading the first page. But I don’t want to. I don’t want to waste my time, waste my hope to read a bunch of hocus pocus. 

Having Type 1 Diabetes has made me this way. I’ve had the disease for 27 years and if you aren’t familiar with it, in short, my pancreas doesn’t not work, will never work, and is just taking up space in my body. Over the years I’ve been told that cinnamon will cure me. I’ve been told that not eating gluten will cure me. Did I research any of these suggestions? NO! I have zero faith in the idea that adding cinnamon to my diet or sprinkling it directly on my pancreas, will cause my organ to come to life and allow me to throw my insulin pump into the wind. 

With that being said, I’m skeptical. Rheumatoid Arthritis isn’t as cut and dry as Type 1 Diabetes is. With diabetes, you take insulin..a fast acting one, a long acting one, or both. The insulin goes in and lowers your blood sugar. Sometimes it’s spot on, sometimes your blood sugars get wonky. But even then, guess what the solution is? Insulin. Yep, more insulin. There is no other option (at least for now). RA is different. There are a multitude of drugs and ways to take them: pill, injection, infusion. I could be diagnosed at the same time a someone else and we will each react completely different to the same medication. This is not a one size fits all disease.

So for now, I think I’ll let these books sit in my kitchen until they’re due back at the library. I’ll glance at their pages in the meantime and come across one like this:  

 

As someone who spends thousands of dollars on medications & doctors visits, I’m really not in the position to ensure that I’m showering with “toxin-free water”. And if my shower is really a “huge burden on my immune system,” why doesn’t my doctor or insurance company demand that I get filters? 

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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.

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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.

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Daily Prompts Hope

This is Your Life

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I’m playing catch up! The Daily Prompt for January 11: This is Your Life

If you could read a book containing all that has happened and will ever happen in your life, would you? If you choose to read it, you must read it cover to cover.

No! I can’t think of a worse idea. It’s not the end result, it’s how we get there. I know I will die and I know I will go to Heaven. I don’t need to know much more.

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