And Then You're At Jax » Blog Archives

Author Archives: mollyschreiber

Rheumatoid Arthritis Type 1 Diabetes

#SAVE32MIL

Published by:


The Obamacare Repeal Reconciliation Act is projected to cause 32 million Americans to lose health coverage by 2020. We need an adequate replacement, not a repeal.

This Friday, starting at 12am EST, use #SAVE32MIL on Twitter, to share your story and why healthcare is important to you. This is a non-partisan event- every American's life is important, and each person deserves quality healthcare.

Join us for a special hour Friday evening (8pm EST), where we'll discuss how to contact your legislators and what to say to them. Be prepared to share your successes and tips in advocacy!

All of this leads up to Monday, July 24th, when you'll be fully prepared to contact your legislators and encourage them to replace not repeal.

Click here to join the Facebook event and be sure to invite as many people as possible!

We are powerful as individuals, but our voices together can really make an impact. Join the conversation on Twitter, using #SAVE32MIL, as often as you can on July 21st.

Share
Rheumatoid Arthritis

Book Review: The Memory of Health

Published by:

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.

“The Memory of Health”, by Edie Summers, is a fascinating read. As someone who has multiple autoimmune diseases and has acquired fibromyalgia as a secondary illness to my Rheumatoid Arthritis, this book really speaks to me. I see it as a piece of work that I will continue to reference for years rather than a book that is read once, not to be picked up again.

Unique Formatting

It isn’t formatted in the typical sense- chapters of simple text, which really works for this book and its content. Edie includes her journal entries which give an interesting glimpse into the author’s life and struggles with chronic illness, from her perspective. I think a lot of patients can identify with keeping a journal but I think we can also learn from Edie, that it’s important to look back at these entries and to consider sharing them. The book also includes the author’s poetry which is a welcome addition to see how ones illness and creativity come together. The journal entries and poetry are accompanied by beautiful images as well. Diet information is dispersed as well- why eating greens, avoiding meat, etc.

The way Edie uses different formats and references different topics thoughout the piece, makes this book feel like it’s giving you more than someone’s story, it’s giving you helpful information that you can use in your own healing health journey.

“Tell your story. Release your soul…”

One of my favorite themes that repeats itself through the book, is how important it is to tell your story. This is so incredibly important to me, as it should be to you. Edie shares that this book gave her a forum to share her stories whereas she had previously felt scared or that she didn’t have anyone she could share with that would understand where she was coming from.

Edie writes that the stories we tell ourselves are often different than the stories our bodies are telling us. She tells us that the story our body is telling us, is the story we need to listen to especially if you are trying to heal. We can’t see where we’ve come from if we haven’t documented every moment of the story.

The Real World is Impacting your Health

This was a really interesting section of the book for me- it covered September 11th, Agent Orange, chemical injuries, Mesothelioma, Veterans, environmental illnesses, and fragrances and how all of these chemicals in our environment are affecting our health.

Popping a pill isn’t always the answer

This section was also a good call to action for patients. A lot of people choose to self medicate before looking at other ways of managing a condition- whether it’s through lifestyle changes or nutrition. It’s important to me to have a holistic approach to my diseases- yes, medicine is absolutely required for me. I’ve also learned that some foods make my symptoms better and some make it much worse. Rest is incredibly important- and yes, it doesn’t come easy but it needs to be a priority. And, as the author points out, it’s important to weigh side effects before staring or continuing a medication. Make sure you do your own research and don’t just blindly take a pill.

If you’d like to check out some additional reviews of “The Memory of Health” please visit Amazon. But, if you’re interested in purchasing a copy for yourself, click here to purchase it at a 40% discount!

 

Share
Favorite Things

Surgery Necessities

Published by:

If you’ve been following me on social media, you have seen me talk about my knee surgery a lot. On June 1st, 2017 I had a pretty invasive surgery on my knee that I knew would involve at least 2 months on crutches, a brace for most of the summer, and a hard recovery. I shared in this post, how I was preparing my life for surgery. I’ve learned over the past few weeks that in addition to preparing your job, your home, etc for surgery, there are things that are really helpful to have on hand. Don’t be like me and learn as you go (and place Amazon Prime orders almost every day)! And please, tell me what you would include as I would love to make this as comprehensive of a list as possible.

Amazon Prime

Speaking of Amazon Prime this service has been an absolute lifesaver for me post-op. I did an Amazon Prime 30-Day Free Trial which was great for me so I could get the things I needed right away, sometimes the same day, if not the next. In addition to getting some of the items you’ll see below, I ordered cat food, litter, shampoo, vitamins… This trial is something I’m probably going to continue or look into having items shipped from Target. I spend a lot of my precious energy going to Target every weekend to stock up on non-perishables. Sometimes that big Target trip is all I can accomplish without having to rest the remainder of the day. When I’m fully recovered, I’m definitely going to look into what I can have shipped to my door for a similar price.

Gloves

Yes, it’s summer here in Baltimore and yes, I’m saying that gloves are a mandatory item to have if you’re going to be on crutches full-time like me. I had ordered these awesome gloves from G-Loves prior to surgery because I was having so much trouble at the gym. My hands were in too much pain to hold on to weight training equipment. These gloves gave me the protection and padding I needed to get my workouts back on track with minimal pain.

I decided to try them with my crutches and they were awesome! I wear them all the time and haven’t had any wrist or hand pain from my crutches which is a big deal since my Rheumatoid Arthritis has been flaring. You’ll also see my Wonder Woman wrist wraps in the photo which would be great if you don’t need full hand support and they’re only $12!

 

Bolster Pillow

For the first week post-op, my sleep and swelling was awful. I had a tower of pillows that I used to elevate my knee and that tower wasn’t the best. I spent the whole night trying so hard not to move, so my tower wouldn’t fall down. I had my family haul pillows up and down the stairs, depending on which room I was sitting in. I went to physical therapy and my therapist had me rest my leg on a bolster while she iced my knee. I fell asleep instantly. She told me to look on online, that the products wouldn’t be a as sturdy (or as expensive), but that I could probably find a good one. I’ve learned from others that some orthopedic surgeons prescribe these prior to surgery and that they couldn’t believe I was trying to recover without one.

Here’s the one that I ordered- Restorology Elevating Leg Rest Pillow Memory Foam Leg Rest Pillow
I’d encourage you to read reviews and make sure the pillow will stay firm and check the measurements to make sure it’s high enough for your ideal elevation.

 

Compression Socks

Prior to surgery, I owned compression socks. Post surgery, I realized that those socks were enough for mild Rheumatoid Arthritis swelling but were no match for post op swelling. I ended up with 3cm of fluid in my ankle and was in a lot of pain as a result. I highly encourage you to have quality compression socks on hand- they really make a difference in recovery.

These socks, PRO Compression: Marathon Compression Socks, are the brand I ended up buying because they come in so many cool colors and patterns! I’m a sucker for fun, colorful socks anyway!

 

Your Pride

All of these items were extremely helpful but there is one thing that you actually don’t need when recovering. But do you know what you don’t need? Your pride. Getting comfortable with asking others to help was hard for me but necessary- I can’t drive myself anywhere, I can’t even cook yet. Admit when you’re hurting, admit when you just can’t do something. I can’t tell you how much better recovery will be if you put yourself first.

Share
Favorite Things

Breathing easy with ImmunizeLABS

Published by:

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.

 

Let’s start with a little background on my…nose.

My sinus infections got so bad that my rheumatologist told me the only way I could continue using Humira was to have sinus surgery. So, I did. I will spare you most of the details but I was awake for the procedure, it was extremely painful and uncomfortable, and they were unable to fully get into my left sinus because well, I couldn’t take the torture anymore Continue reading

Share
Favorite Things Rheumatoid Arthritis

Review: TechCare TENS Unit, a must have for chronic pain!

Published by:

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.

I have a lot of products that I’ve acquired in my battle against the pain Rheumatoid Arthritis brings. Lotions, patches, creams, pills, compression braces for almost every joint in my body, and a TENS machine. Some work great, others not so much. Some were planned purchases, others acquired out of desperation (when you’re at the grocery store and your body somehow ends up in the pain relief aisle and you are looking up and down because there has to be something new).

When the opportunity to try and review the  TechCare TENS massager came up, I jumped at the chance. I already own a TENS machine- I’ve had it for almost five years. Initially it was great but as my disease progressed and my pain increased, the machine couldn’t keep up. I was maxing out intensity and not getting much relief. My physical therapist tried to order me a new one yet my insurance decided that even though I lived in Maryland and my insurance policy was Maryland based, it would only be covered if I lived in Pennsylvania. Go figure.

I’m now happy that I couldn’t get a machine through my insurance because I probably wouldn’t have tried the TENS from TechCare. The TENS unit that I absolutely adore and use daily. The TENS unit that provides me with immediate, intense relief.

So why do I love this unit? Let me count the ways:

  1. It’s rechargeable. Ahh, no batteries! And the charge lasts for multiple uses and recharges quickly.
  2. Intensity. Whoa. Going from my run of the mill TENS unit (at a comparable price as well) to this has been amazing. I have yet to use the intensity above 60% and that’s with knee pain that requires surgery this week.
  3. Can use 4 electrodes at the same time. This is awesome. I can have one set programmed to work on my extremely painful knee and have the other set massaging my calf muscle which tightens up from pain.
  4. Six massage modes- tapping, acupuncture, deep tissue, foot, cupping, or a combination.
  5. Time- my previous TENS only allowed 20 minute treatments. This allows you to dial up to 60 minutes and keep adding time as you wish.

Here’s what is included in the box:

1 controller: this unit is lightweight, painless to operate (RA has not been kind to my hands)

3 pairs of electrodes: small oval shape, medium oval, and larger rectangle; the multiple sizes are great- small ones work well on my elbow or wrist whereas the large rectangles are perfect for my legs

2 electrode cables: this enables you to use 2 sets (4 pads) at once

1 carrying bag: dark blue, drawstring, and everything, including the charger, fits inside

1 usb charger with wall adapter: easy to charge whether it’s via your computer or a regular outlet

1 electrode pad and wire holder: these are great and my only complaint would be that the kit included a total of 3; I tend to use all 3 sets of pads and have kept the plastic sheets they came with to stick the pads on when not in use

1 user manual: this leaves a bit to be desired- although it explains how to use and care for the product, it doesn’t explain the different modes in detail

1 treatment points chart: I honestly haven’t used this- it looks very similar to the charts you would see in an acupuncturist’s office; I tend to just place the pads where I’m having pain

The bottom line:

This TENS unit from TechCare is awesome, worth its low price, and a definite must have for patients with chronic pain. Interested in purchasing one of these TENS units for yourself? Check them out on Amazon:

Share
Rheumatoid Arthritis

Addressing Fatigue and RA

Published by:

“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

Share
Rheumatoid Arthritis

How to prepare for surgery

Published by:

A year ago I had my first knee surgery and I’ll be going back into the OR in a few weeks. Thinking back to my recovery last year, I realized there are things I can do now, to make life post-surgery a bit easier. 

Refill Prescriptions 

I typically refill my meds when I’m sorting my weekly pills and realize I need more for the following week. Now, I’m refilling early (when I can) and also plan to fill up two weekly pill cases. That way I can have my regular am and pm meds sorted and not have to deal with them right away. 

Doctor’s Appointments

If you have a chronic illness or two, you most likely have a lot of apppintments. There’s a good chance that one or more of them are set right after your surgery. If you wait and try to reschedule, you may be pushed way out, if your specialists are as busy as mine. Move your appointments now. For example, my rheumatologist follow-up is 3 weeks after surgery. I already know I can’t start my next biologic until 3 months post-op. It’s also going to be difficult to assess my disease activity when I’m on post surgery pain meds, crutches, and have limited mobility. Moving my appointment a little further out keeps me from wasting my time, my copay, and it’s one less ride I need from my family. 

Make Things Accessible

Since I hoard enough insulin pump supplies to be fully prepared for the diabetes apocalypse, I have to keep everything in under the bed boxes. It’s quite difficult to reach something under your bed when you’re in a full leg brace and can’t bend down. I’ve moved a couple weeks worth of supplies into a basket on a shelf that I can easily reach. 

Practice

Last year after surgery, they wheeled me out to my mom’s waiting car. I asked them to open the passenger door. I slid my butt in and went to bring my right leg in. Fail. My mom’s seat only goes back so far and I guess her car wasn’t meant for someone who is 5’8 to keep their leg straight. I needed up having to scoot backwards into the back seat. It is a miracle that I didn’t vomit all over that car. This year, I’m going to try getting into my own car’s passenger side, before I’m heavily medicated and woozy. 

Vacation Planning

Think of when you’re planning to go away. Make sure you have your plane tickets (FMLA papers, clearance for surgery from your PCP). You make sure your favorite clothes are clean and laid out for packing (or laid out to be easily grabbed when you need them). You have the things that make the trip easier- for me, it’s vitamin c drops, chapstick, my charger, and Propel water. 

I’d love to hear your suggestions for a smooth surgery recovery, please share! 

Share
Geek in the Pink

Important lines to draw between your advocacy life and personal life

Published by:

If you’re just beginning your advocacy journey or have been fighting the good fight for awhile now, it’s important that you take a minute to protect yourself. By protect, I mean to literally keep you and your family safe, to protect your personal information, but also to ensure you keep yourself balanced.

Facebook

There are two areas of Facebook for you to address- your personal page and your advocacy work- whether that is a page or a group you oversee.

  • Friends: consider this rule- you only accept friend requests from people you have met in person. I recently did a bit of purging and found myself trying to place how I even knew some of the people I was friends with. Remember, what you post can also be seen by friends of your friends (you can adjust the setting for this).
  • Advocacy Page: here anyone and everyone can like and follow along your advocacy journey; you can pick which posts you also want to share on your personal page, so you are still reaching your friends (who should hurry up and like your page of course!)

Instagram

This is a tricky one for me. I have a public account that shares all aspects of me. You can find my cat, what I had for dinner, and facts about my disease. But here is what you won’t find anymore:

  • Photos of my children: up until last week, you would find photos of my teens mixed in with my injections and favorite advocacy t-shirts. But not now. Why? A few reasons- my profile is public which means anyone and everyone can see what I share. As much as I would like to think that everyone in the world is wonderful and has good intentions, that’s not accurate. And more importantly, my children should have a choice in what goes up online about them.
  • Your data: make sure prescription and medical record numbers aren’t visible in your photos. Same goes for your address, phone numbers, and names of your physicians. 
  • Where I am at all times. Enter the #latergram. Again, privacy.

Email

If you’re like me, you check your email often…maybe a little too often. My inbox is full of school newsletters, potential product reviews, things I *need* from Amazon according to Amazon, new posts written about my diseases, events/conferences I should consider, and tons of health updates. All good things that prompt some type of action from me.

  • Split up your mailboxes. I have an email for my blog that was just sitting out in gmail land unused. Recently, I’ve started moving all of my “health” email content to that address. Why? Every email I read made me immediately think of what I could do with that information- do I share it on my Facebook page? Write a blog post about it? Tweet or Instagram it? Now when I’ve read my important emails (such as one about school closing early or a message from my doctor), I can go over to look at my advocacy updates. It’s a simple effort in self care for me as well.

Have you made any changes like this to your online presence? Please share what has worked for you and what I may have missed in the comments below!

 

Share
Family

I’m still a good mom

Published by:

It’s 12:30am and I just woke up to find my 13, almost 14, year old daughter sound asleep next to me. This rarely happens but when it does, it either means she couldn’t fall asleep or she’s had a really rough day. Whatever the reason may be, it means the world to me.

Waking up to see her ponytail on the pillow next to me means that just maybe I’m doing an ok job. Continue reading

Share