And Then You're At Jax » Blog Archives

Author Archives: mollyschreiber

Rheumatoid Arthritis

Doors are Closed for the Disabled

Published by:

This is the first time in my life that I’ve been on crutches. Other surgeries were wrists..lower body injuries always got me a glamorous Velcro boot. 

I’ve only had Rheumatoid Arthritis for four (extremely long) years and I know that the possibility of another surgery, injury, disability..is pretty good. Sure, that sucks. But you know what sucks more? 

The world is not accommodating for people with disabilities at all. I know, I know. Newsflash, right? No. 

The week after my surgery, I got sick and decided to run up to Patient First (translation- hobble to my mom’s car and have her drive me). I got up on my crutches and got to the doors. They were regular, pull handle doors. Two sets of them. No handicap button, no option for me to open them on my own and not risk injuring my recovering knee. 

In case you aren’t familiar, Patient First is an urgent care clinic where people go when they are sick. When they have injured their leg playing soccer, or hurt themselves on the job. And the doors aren’t accessible to people without two working legs and arms. Totally makes sense. 

Moving on- I came to notice doors at every single place I went to. 7-11? No slurpee for you, young man using a cane. Old Navy? Nope. (You didn’t think people with a disability should be able to shop for their own clothes did you?). Physical Therapy? Nope- so pissy about that one. 

If I’m understanding things correctly, those of us with a disability- permanent or temporary should only be able to visit the pharmacy and the hospital. That’s all we need right? 

Wrong. 

If you’re a business owner, listen up. I don’t claim to know the first thing about the expense of handicap accessible doors. I’m sure there are building code and security issues as well. But what I do know is that everyone has a right to go to any business they like and be able to get in the door. 

So what can you do? 

  • Install a doorbell. A simple button that someone at wheelchair height can utilize to alert someone inside that he/she needs assistance. Go visit a gas station pump, you’ll see one there. 
  • Utilize your greeter. So many businesses have someone standing/sitting at the front door to greet customers. Train them! Empower them to look for those in need and be ready to assist. 

As a fiercely independent person, crutches were a big blow to me. Luckily for me, there was an end in sight but plenty of others are going to be using crutches, canes, wheelchairs forever. Please don’t lock us out. 

Share
Favorite Things Rheumatoid Arthritis

Mo’s Dream Cream Review

Published by:

Disclaimer: 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 no way influenced by the company.

As you’ve read in countless posts by me, I take a lot of pills. And although some of my pain can only be relieved with a pill, there are times when I will try everything I can to avoid taking one. I have lidocaine patches (great relief, if you can get them to stick to you…forget about large joints that you might want to move and keep a patch on at the same time), prescription NSAID gels (work pretty well but the smell leaves a lot to be desired and the copay can be expensive), and every over the counter cream you can think of (yes I own BENGAY).


Enter a new product into my pain relief arsenal: Mo’s Dream Cream. What makes this product different? It’s all natural. As in legit all natural- you can read and pronounce every ingredient: Capsaicin paste, essential oils, cocoa butter, glycerin. Sure it’s nice to be able to pronounce the ingredients but you know what’s even better about them being all natural? They are safe. Safe to use and to have around pets, children, etc. One of my favorite things that the creator, Keri, told me was that she used the lotion on her Chocolate Lab for his hip dysplasia and he was able to run again! And I absolutely love that the product is named after him and his adorable photo is on the bottle.

What else makes this product different? The product creator and owner, Keri Anderson. First of all, Keri understands chronic pain. She herself has spent years suffering from pain and has taken a variety of pain medications as well. She understands that although a pill may relieve your pain, the side effects can be gruesome (she notes being so confused that it was hard to remember her kids names at times). She also understands that most over the counter creams/lotions typically don’t offer lasting relief.

Keri spent years studying Apothecary and Chinese Herbology in an effort to create a product that would eliminate her pain for a long period of time- long enough to get a decent night’s sleep! She learned how to make her own homemade capsaicin paste that would be powerful enough to eliminate pain but not so powerful that it burned the skin.

So why should you give Mo’s Dream Cream a try? First of all, it works. I was able to use the Pain Relieving Lotion and notice a difference within a few minutes. Sometimes I would need a second application which Keri herself mentioned can be necessary with severe pain. Secondly, the scent. This product smells nothing like those drugstore creams and lotions that you’re thinking of. It doesn’t smell of chemicals- it smells fresh and clean. Even I was surprised that the cayenne sent wasn’t as strong as I expected.

Want to give Mo’s Dream Cream products a try? Use code “MOLLY4U” at checkout and you’ll get 10% off of all products/promotions. This code never expires! Click here to visit their site and please let me know in the comments if you purchase a product! I’d love to hear your opinion.

 

Share
Rheumatoid Arthritis

Slow And Steady

Published by:

For the previous nine months I had been in extreme pain. Painkillers 24/7 just to take the edge off and try not to throw up. Ice was mandatory just to drive to work. I tried injections, physical therapy. Nothing helped.

Two weeks ago I had knee surgery. I’ll spare you the details- knee cap realignment, degenerated meniscus, lots of cartilage/tissue work. I can already say that it was a success. I am off regular pain meds for my knee (my other joints miss their methotrexate and Humira badly though) and am ready to power through recovery. Or so I thought.

I’m still restricted to using crutches 24/7. I’m 100% compliant on stairs. When it’s a few steps to the kitchen or in my living room, I’m not so compliant. Tonight I went out to grab dinner with my husband. We parked in the handicapped spot and I decided to leave the crutches in the car and walk the few steps in, holding on to my husband for support. I felt a little weak in the knees (awww ?) but otherwise did just fine.

Fast forward a few hours later. Holy pain batman. My calf muscles feel like I have run a marathon (or what I imagine that to feel like. You all know I don’t run!). Both knees ache, my hips are mad, as is my lower back.

Stupid to walk without crutches? Maybe. But it was eye opening. This recovery is not going to be easy. It’s going to be hard. And painful. I think it was important for me to have this set back. Physcial therapy is going to be rough as is working full time in the office, rather than at home. I need to remember how the few steps tonight made me feel, so that I can focus on going slow and steady.

I’m embracing my new Tortoise Life and the reminder my husband had waiting for me in recovery at the hospital (see Cruiser below) needs to be with me at all times.

Share
Favorite Things Rheumatoid Arthritis Type 1 Diabetes

PillSuite Review

Published by:

Disclaimer: 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 no way influenced by the company.

Anyone with a chronic illness or two, will tell you that managing it often involves pills. A lot of pills. I easily take up to twenty pills a day- usually split into AM and PM doses. I have a great pill case for home but what about when I travel? I usually bring my bottles (which are cumbersome, large, and not good at staying closed), resulting in a ginormous carry on. If I’m just going away for a night, I use ziploc bags. A giant ziploc to hold teeny tiny pills makes no sense. So what’s a pill popping gal like myself supposed to do?

Enter PillSuite.

PillSuite is an awesome innovation in pill storage. You fill up a funnel compartment with a week’s worth of pills. You dump them into teeny little plastic bags, and push the open end into a little green machine with one giant button. Pressing that button triggers the little green machine to heat seal the plastic bag together. It is extremely easy to do and very gentle on my hands which are often not the most cooperative.

When I first received the PillSuite system, I couldn’t wait to go on a trip. I figured that would be when I would use this item. Luckily for me, I did have a trip planned very soon after I received this product. And yes, the PillSuite was extremely helpful for travel. But I learned, it has many more uses for me.

I was recently prescribed Leucovorin, which is a single pill, that I take 24 hours after injecting methotrexate. My injections tend to be in the middle of the day- not first thing in the morning or late at night, when I take my pills. I simply packaged one pill and dated the Suite for each weekend..then I didn’t have to worry about adding a pill to my case or trying to remember if I took it or not.

It’s also helpful for my children- if they go on a sleepover, I can easily pack them the single pill they will need for the day.

Overall, I found the PillSuite system to be easy to use and a great help to me in managing my medication regimen at home or away. 

You can visit PillSuite here and on their Facebook page

Share
Favorite Things Rheumatoid Arthritis

Lidocaine patch tip!

Published by:

If you have lidocaine patches prescribed to you, they’re a blessing and a curse. If and when they stay on, they can be really helpful in managing pain. But, depending on where you put them, they may roll off. 

In the past, I tried wrapping an ace bandage around but the pressure made the patch irritate my skin. I’ve tried tight clothing but they still tended to roll. 

But yesterday, I grabbed my cover tape that I typically use with leukotape to keep my kneecap in place:


Three strips covered the lidocaine patch and kept one in place on my knee for all 12 hours! The tape is really gentle on your skin so I had no issues when removing it. 

The tape is inexpensive on Amazon and easy to use. Let me know in the comments if you have any other tips or tricks that work for you! 

Share
Rheumatoid Arthritis

Cane I ask you a question?

Published by:

I broke down and ordered a cane today. A cane. I am extremely self conscious about this. When I mentioned the idea to my husband, he said that his fear is that I’m going to lose the ability to walk. I get that. I have that fear too. And it’s hard not to get pulled into that thought process.

But. I am not buying a cane to use for the rest of my life. I’m not buying a cane to use every day (I have every intention of hitting the gym this week). I am buying a cane for the same reason that I have bought a brace for almost every part of my body. For the same reason that my freezer is half full of ice packs. Just in case. For my bad days. For the days I need a little more support.

I will continue to take this disease day by day. Hour by hour if I have to. Yes, one day I’ll be killing it at the gym. And then the next day, I’ll be ordering a cane. All I ask is that you see me as a person who has good days and bad days. Not a person who picks and chooses when her illness affects her (wouldn’t that be nice). Keep inviting me to Fitbit challenges and keep asking how I’m doing. Whether I’m on the treadmill or walking with a cane, I’m me, not my disease.

Share
Diabetes Blog Week Type 1 Diabetes

The Healthcare Experience

Published by:

Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!


Having multiple chronic diseases does involve a lot of doctors appointments. There are some overall healthcare items I’d like to change:

  • Communication. Especially between providers. And, especially, before my visit. It would be great if my endocrinologist read my rheumatologist’s visit note before my appointment. She would see that maybe I was having a rough month and that prednisone was on the horizon.
  • Fluidity. If I ask my endocrinologist about my trouble sleeping, she gives me some ideas but ultimately says that that issue falls under my PCP. Totally understandable. But maybe she could take the extra step to send a message to my PCP, letting her know that I needed some help. Save me a doctor’s visit and a copay.
  • Timing. My diseases aren’t just being managed from 9 to 5, Monday through Friday. Recently, my insulin pump decided to stop working. At 11pm on a Thursday night. My endocrinologist and Medtronic were easy to get in touch with but my insurance company? Nope. My endocrinologist called in a Lantus Rx, to my 24hr pharmacy, but it was delayed because my insurance initially rejected the claim. It wasn’t resolved until the next morning. Just because I wasn’t in the ER, doesn’t make my need for insulin any less important.
Share
Diabetes Blog Week Rheumatoid Arthritis Type 1 Diabetes

Call me Diabetic but don’t call me Arthritic

Published by:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? 

keep-calm-i-am-a-diabetic

I have had Type 1 diabetes for 28 years. I am a diabetic. I am also the child of a diabetic. I’m a mother, a daughter, a wife, a blogger, a worker, a neighbor, a knitter, an exerciser. I’m also a person with children, a person with a blog, a person who goes to the gym, etc. I am a lot of things. And all of those things define me. And that’s ok.

I use “diabetic” and “person with diabetes” interchangeably. I’ll tell a physician that I’ve had diabetes for years but in the next breath I might say to someone in the waiting room “oh this is my pump, I’m a diabetic”. I wouldn’t think twice.

Ready for a curve ball? I also have Rheumatoid Arthritis and I think I would be pissed if someone referred to me as arthritic. Just typing that word bothers me. Sure my joints are arthritic but I’m not. I can’t really put my finger on why arthritic bothers me so much yet diabetic doesn’t. I have come to terms with diabetes- I have it, I’ve had it for a long time, and I’ll always have it. Sure my blood sugars can be wonky but in a weird way, I’m used to that. But things are different with RA. RA is painful, it’s debilitating. I would take diabetes over RA in a heartbeat, I wouldn’t need to think about it.

So maybe that is my issue. I have diabetes but it doesn’t have me, so the terms and language don’t bother me at all. But most days, I feel like Rheumatoid Arthritis has me. It controls me. It decides if I’m going to cry in pain on the way to work or if the ice pack strapped to my leg will be enough. And maybe, I need to come to terms with that.

Share
Diabetes Blog Week Type 1 Diabetes

The Other Half of Diabetes

Published by:

We think a lot about the physical component of diabetes, but the mental component is just as significant. How does diabetes affect you or your loved one mentally or emotionally? How have you learned to deal with the mental aspect of the condition? Any tips, positive phrases, mantras, or ideas to share on getting out of a diabetes funk?

Haidee-Merritt-January-Cartoon

Diabetes is draining. It never goes away, you can’t take a break- it’s kind of like having a toddler and trying to go to the bathroom for one second. They’re right outside the door, screaming your name. 

In addition to the carb counting, temp basals, infusion set changes, beeping pump alarms at all hours, and your pump falling out of your pants on a regular basis (that can’t just be me, right?), diabetes effects your mood. A simple dip or a climb in blood sugar, can set the tears flowing or make you want to grab a bottle of water out of a stranger’s hand. 

Diabetes is draining. So what can a girl do? Laugh. Today I told people at work that my pancreas needed a new AAA battery. I also said that eating a chocolate covered cricket was 100% not worth a bolus (and I stand by this, I will not be swayed, don’t bother trying). 

What else can you do? Share. Get on Twitter- I guarantee at any hour of the night, someone is tweeting about diabetes. Just knowing that at 2am, someone else is dealing with a blood sugar that just won’t behave, means the world. Someone gets you. They get your disease. I encourage every person with diabetes to get connected- don’t go at this alone. 

Share
Diabetes Blog Week Type 1 Diabetes

Message Monday

Published by:

It’s the first day of Diabetes Blog Week! Woohoo! If you didn’t sign up, it’s never too late!

Let’s kick off the week by talking about why we are, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog?

6e6350d4dbe639aa3accf26be3a90cd9

I think sharing your story is the most important thing you can do as a patient. Why? Because each of us has a unique perspective on diabetes. There are still countless people- physicians, nurses, family members, friends still don’t understand diabetes or even know enough to help us. And even worse, there are countless incorrect myths floating out there.

My mission is simply, to put a face to diabetes. If one person wears their pump proudly, instead of hiding it, then I have accomplished my goal.

Share