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Rheumatoid Arthritis

Ice, Ice, Molly

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If you’re like me, you often ignore your husband’s constant reminders to take pain meds before the pain gets bad. I don’t know why I ignore them and quite frankly, I’m stupid to do so. 

So here I lay, hurting. Hurting so much that finding something to watch on tv, in order to distract myself from the pain, is too tall of an order. 

  
The only solution I have when pain gets this bad is ice. Ice packs straight from the freezer. I have a ton in a bunch of different shapes and sizes, but this one that NatraCure sent to me is by far my favorite. Why? 

  • It gets very cold, in the fridge or freezer, but remains flexible, it does not solidify. 
  • It drapes over my knee and gets both sides of it, without me having to use multiple packs or lay in an uncomfortable position so it doesn’t fall off. 

I find that ice helps dramatically lessen my pain while I wait for pain meds to kick in. What do you do when you’re waiting? 

*Although NatraCure sent me this product for review, all opinions are 100% mine*

Rheumatoid Arthritis Type 1 Diabetes

Injecting Emotions

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I get emotional after my methotrexate and Enbrel injections. Sure they hurt but this is after the pain has subsided. The tears come. I took the time this morning to think about why I get so teary. 

  

Type 1 Diabetes is real for me almost every minute of the day. I don’t have periods of coping, I’m on insulin, via a pump, attached to me 24/7. Sure a high or low might rock me for a moment but I’ve had the disease for over 27 years and I’ve come to terms with it. Does it suck? I guess. But in the big scope of life, it’s manageable. Bolusing for meals is second nature…I often don’t have to think about setting up a temp basal if I’m trending low. I just do it. 

Rheumatoid Arthritis is different. It isn’t a quiet disease. There is pain that brings me to tears, makes me truly want to give up. Pain wakes me at night, makes it difficult to drive. Fatigue hits me like a wrecking ball, I truly believe I could lay down anywhere, at any time, and sleep. 

Taking my weekly injections are a reminder that my disease is winning. Seventeen injections of Enbrel and things aren’t even predictable or controlled yet. Adding methotrexate back in is a gamble. I could easily get an infection (as I have before) and I have a guaranteed weekend of fatigue and nausea. 

I cry after my injections because it’s a moment where I don’t have control. I can’t take these drugs and get immediate results like I do with insulin. I take them and hope that this is the week I’ll feel amazing, I’ll feel something. And the honest truth is, deep down, I don’t think that’s ever going to happen. This jerk of a disease will somehow always manage to come out on top. 

Favorite Things Rheumatoid Arthritis

Favorite Things, Part Two

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Yesterday I shared my favorite booties and mittens that help warm up my hand and foot joints. Today I want to share two additional products that I have found to be extremely helpful when dealing with Rheumatoid Arthritis pain.

First are my Thermoskin Thermal Gloves

  
A few people on Twitter had recommended these, so I gave them a shot. They are absolutely wonderful. If you’ve worn compression gloves before, you may find that these feel very thick in comparison. They are. I honestly haven’t mastered doing many activities with them on, I primarily use them when I’m resting or sleeping. Although they are easy to get on, they can be a little tough to remove, mainly because your hand might be a little sweaty! I find that pulling them off (so they’re inside out) is the easiest way. These gloves work in minutes to reduce my pain and when I remove them, most of my swelling is nonexistent.

I did notice some of the threads were loose when I received them from Amazon. I was initially concerned but can tell you that after months of wear, they are still in great condition..I haven’t had any problems.

Secondly, I’d like to share my Omron Pain Relief Pro Unit


I’ve been to Physical Therapy numerous times for my elbow and my favorite part of the visit was having the TENS unit put on me. I discovered a year ago that you could buy TENS units over the counter, without a prescription, and they’re flex spend account eligible, sweet! I read some reviews on Amazon and to be honest, I was so determined to buy a TENS unit, that I purchased this one because it was the only one in stock locally. I don’t regret it.

The unit is extremely easy to use. It has eight different modes: tap, knead, rub, arm, lower back, leg, foot, and joint. It also offers 10 levels of intensity and I’ve honestly never needed to go higher than an 8 so it should accommodate most levels of pain. The pads are pretty sticky and replacement pads are available at a reasonable price. You can also purchase additional pads so you and another family member can share the device.

Do you use a TENS machine or compression gloves? What are your favorite ways to reduce pain without medication? Please share in the comments below!


Favorite Things Rheumatoid Arthritis

Favorite Things, Part One

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If you’re lucky enough to suffer from moderate to severe Rheumatoid Arthritis, like me, you probably have a collection of ointments, special gloves, socks, heating pads, etc. When I’m in pain and desperate, I often impulse buy things in the aisles of Walgreens. Some work, some don’t. I’ve often turned to google and my Twitter friends to find out what others use and thought it would be nice to share what works for me, in hopes that it might work for you as well.

The people at NatraCure saw my constant tweets about trying to relieve my pain without always popping a pill and offered to send me some of their products to try. Note: Although NatraCure asked that I share my opinions on their products, thoughts are 100% my own. Other than having the products sent to me, I am in no way being compensated for what I write. 

They sent me two products:

The first are these Arthritis Mittens


I own a paraffin wax warmer and honestly have only used it once. It worked really well, made my hands feel great but it took hours to warm the wax. When you have pain, you want to make it stop. Fast. It’s that simple. If I had to wait for the wax to melt, I would rather just pop a pill and get relief quickly. These mittens help solve that problem. They have an inner gel lining that contains seven oils. You heat up the mittens in the microwave and slip them on to your aching hands. I keep mine on for about 30 minutes…my aching joints always feel better within about 10 minutes of having them on. As a bonus, when you remove them, there’s no messy wax to clean up. The last thing you want to do when you’ve just reduced pain is to start cleaning!

The second product I tried are these Arthritis Booties


These are very similar to the mittens above..you warm them up in the microwave and they provide the same warm, moist heat. Some reviews said people weren’t happy that you can’t walk in these because you’ll damage the inner liner. I actually found this to be a positive. Once you put these on, you are “forced” to relax. You can’t get up and if you use the mittens at the same time, like me, you have to sit still. I found myself so relaxed when using both the mittens and booties at the same time..I would almost fall asleep each time.

I have only had both products for a little over a week so it will be interesting to see how they hold up. It would be good to know if you can purchase additional liners..I’ve sent a message to the company and will share their response.

There will be more posts to follow but let me know in the comments below what products work for you! Gloves, braces, compression socks, you name it, I’m interested!

Rheumatoid Arthritis

Ignore It

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I often ignore the fact that my rheumy diagnosed me with fibromyalgia last year. I think of my battle with Rheumatoid Arthritis as being more “real”, more damaging. When you tell a physician you have RA, the response is usually that of pity/sadness “oh that’s awful”. When I say the word “fibromyalgia” not much of a response is given. I am often made to feel that I am making it up or as I was recently told by a pain management doctor, “they probably just told you that you have fibromyalgia because they didn’t know what else to say”.

I identify good and bad days by how my RA is treating me. Am I stiff, swollen, in pain? I associate all pain with RA and ignore my fibro diagnosis. This truly doesn’t make sense because I am on Cymbalta because my PCP agreed with my rheumy’s fibro diagnosis. It also has reduced my pain over the past 8 months I’ve been on it. Yet to me, my fibro isn’t given the time of day.

Tonight I noticed that the back of my skull is so tender and painful to the touch. For years I had this pain but it’s been nonexistent for the past few months. I, of course, googled it and most of the responses stated that it was a trigger point. I immediately pressed on my chest, yup, lots of tenderness and pain. Same with my lower back. My rheumatologist assessed me for fibromyalgia by checking these same points.


So for me, this is a wake up call. I have devoted so much time trying to understand RA, assessing my disease activity, etc.  But has everything actually been related to my RA? Have I been assessing Enbrel’s effectiveness based on pain that could be is fibromyalgia related instead? Somehow I have to begin the daunting task of figuring out the difference between symptoms of Rheumatoid Arthritis and Fibromyalgia. Any advice would be greatly appreciated.

Rheumatoid Arthritis Type 1 Diabetes

Get used to it

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It’s hard to pinpoint when I got used to being a diabetic. I’ve had this disease for 27 years now and I’ve accepted it as part of who I am. Does it bother me if my pump looks funny in my clothes? Sometimes. Do I enjoy high or low blood sugars? Nope, not one bit. But I’m used to it. I’m used to the fact that eating a box of raisins today may not change my blood sugar but tomorrow it will. I’m used to the unpredictability of Type 1 Diabetes and I’ve accepted it. 

What I am not used to is my Rheumatoid Arthritis, but I think I’m getting there. When I was diagnosed three years ago, I was a mess. Fast forward 6-9 months later, thanks to Humira and methotrexate, I was basically in remission (or how I imagine it to be). I very quickly got used to less pain, more energy, and feeling more like myself. 

Fast forward a few months from there..I got sick and taken off of my miracle meds. I’ve been fighting since. But this time, I know my sense of remission will be different. My doctor, and various imaging and tests, has confirmed that I have permanent damage to my elbow, knee, hands, and feet. This was confirmed prior to spending nine months on Orencia with things getting worse. Permanent. Permanent damage. Permanent stiffness. Permanent pain. 

Up until this week, I viewed a lot of things as bandaids. I would often say “once my biologic works, I won’t need these compression gloves/knee braces/elbow supports”. “Once my biologic works, I won’t have trouble sleeping or need pain meds anymore.”

The goal of my RA medications is to stop or at least slow down the progression of my disease..to reduce inflammation. They simply won’t change what’s already happened to my bones and joints. I’ve known this for awhile now but it never really sank in until yesterday. I caught myself telling my doctor that “as soon as my Enbrel started working, I’d be able to run, sleep well, and wouldn’t need any more pain medications”. As much as I would love for this to be true, I have to start being honest with myself and look for ways to improve my quality of life amongst the pain and fatigue. 

To start, I’m vowing to realize that exercising for a few minutes is better than nothing. Just because I can’t go for a long time like I used to, is no reason to stop trying. I am not going to put myself down and/or think about when the day will finally come that I feel great enough to exercise for hours. I’m going to do what I can, as often as I can, and leave it at that. I just have to get used to it

Rheumatoid Arthritis

Ouch

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Since Twitter limits my complaining to a few characters, I’m turning to my blog to vent tonight. I apologize. I don’t think this post is going to offer you much, but my hope is to type it all out and feel a teeny tiny bit better. 

Today has been one of the hardest days I’ve had in a long time, in regards to my Rheumatoid Arthritis. 

It started last night. I couldn’t sleep- I was so uncomfortable and in so much pain. I maxed out my pain meds and meds to help me sleep.  When I would fall asleep, my blood sugar would go low and my pump alarm would sound. See my lovely sleep graph below. It’s supposed to be solid dark blue. 

  
I took pain meds before I left for work. I took more at work. I waited until lunch and took more. Work wasn’t wasn’t stressful but the deep ache in my joints was distracting. I had already planned to leave work early to get my hair highlighted and cut. This was important to me- I usually color it myself and get a cheap haircut. This results in more time blow drying (which hurts my elbows like crazy!) to try to make the cut work. If I’m going to have red eyes with dark circles under them and a strained look on my face from being in pain, at least my hair could look good! 

As I waited for the highlights to lighten, I took more pain meds. I used Voltaren Gel like it was hand & body lotion. Nothing helped. 

I finally got home, my husband walked over to me, and could instantly tell I felt bad (I love him so). 

So here I am. Wearing my favorite sweats, with my favorite blanket, surrounded by my husband and kids, waiting for my I’m-at-home-pain-meds to kick in. And I think this blog has served its purpose. I do feel a bit better. 

Rheumatoid Arthritis

Notes

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I’m a note taker. I write everything down. I like to figure things out and be able reference my notes later on. I love crossing off a to-do list. It’s just who I am. 

Last month, I started writing down how I was feeling and what medications I took, every single day. Why? Every time I go to my Rheumatologist, she asks how I’m doing. When you’re in pain and/or exhausted it’s hard enough to remember what you had for breakfast, let alone how you felt a week ago. And most of the time, when I’m in pain, I don’t want to talk about anything. 

Here’s my madness:

  
For the first time, I had a really productive visit to my doctor. I was able to remember what I wanted to get out of the visit. I left with clear instructions on how to try to manage my pain and new medications to try. I felt like I had really stated my issues rather than only relying on my joints that might be bothersome just that day. 

I’m now in the habit of updating my planner every day, especially if I’m feeling good. I’ve noticed that Tuesdays are a good day for me..at least for the past 2 weeks! I’ve noticed that my pain is at its worst on Thursdays & Fridays. And in time, I’ll be able to see if adding methotrexate to Orencia has helped.

   

The less I have to remember, the better. ?

Rheumatoid Arthritis

Unpredictable

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After an evening of pain and irregular sleep, it was surprising to wake up this morning and actually feel ok. I didn’t have any major pain and was able to make breakfast for my family without feeling wiped out afterwards. I took my Meloxicam anyway. 

I ran errands with my daughter which I’m rarely able/willing to do because of either fatigue or pain. Nothing crazy- pharmacy, library, car wash, quick trip to the grocery store. I felt so great when I got home that I sat outside, listened to my audiobook, and enjoyed the Baltimore weather for a few minutes. I took a nap afterwards for about an hour, much shorter than usual! I dropped my son off to play basketball with some friends. Then I came back home. 

The minute I walked in the door, I knew it was coming. I sat my keys down on the counter and saw that my fingers were swollen. My hands started to ache terribly and both legs joined them. I felt like I had just gotten knocked down. 

What the hell? I didn’t do anything. I didn’t go run a marathon, didn’t clean the house, or even go to work. Why would pain come on so suddenly? 

I walked down to the basement to get the laundry, laid down on my husband’s weight bench, and cried. The pain was so strong and so frustrating. 

I always say that having Rheumatoid Arthritis is ten times worse than having Type 1 Diabetes. I don’t mean because of complications, life expectancy, medications, etc. Even though diabetes can is unpredictable, it at least gives you moments of consistency. You can at least assume that if you eat a Snickers bar, your blood sugar will go up (most of the time, ha!). Rheumatoid Arthritis has provided me with nothing even close to predictability. I have no idea what each day will bring. All I know is there will be pain at some point, in some capacity. 

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.