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Dysautonomia Rheumatoid Arthritis Type 1 Diabetes

Surviving a tilt table test with diabetes and rheumatoid arthritis

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Today I had the pleasure of experiencing a tilt table test. I did a lot of research beforehand on what the actual test entailed, asked others about their experience, etc. Going in, I felt pretty prepared but I walked away with some info to share:

Type 1 Diabetes

You have to fast beforehand which isn’t always the easiest thing to do with diabetes.

  • Make sure you check how early you have to fast- for me it was only 4hrs before the test which is a bit more manageable.
  • If you go low (like I did), apple juice should be your go to. It’s clear and does the trick quickly.
  • It should be ok to wear your pump/CGM. You may have to ask the nurse to check with the physician or someone else in charge as often their initial response is to have you remove it.
  • Be prepared for your blood sugar to respond to the stress this test will put on your body- the anticipation caused me to go low but the actual test made me go high.

Rheumatoid Arthritis

You will be standing in a locked position.

  • Be prepared for some pain during and after the test- the entire test can take 90mins and a lot of that time is standing with very little movement.
  • Bring pain meds to take as soon as you’re done as pain isn’t something they’re necessarily going to address in the cardiac recovery room. I didn’t have anything until I got home and at that point I was feeling awful.

Self care tips

  • Make sure your driver is present during the results portion of the test. It’s a lot of information to process after you’ve just passed out.
  • Wear comfortable shoes and pants as you’ll keep them on the entire time.
  • Take the remainder of the day off. As someone who was back at work right after surgery, you might not believe me, but you will feel horrible after this test. Use your afternoon to give your body the hydration and rest it needs after such a stressful event.
Rheumatoid Arthritis

Is it ok to fail?

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Today I had to call out. I am typically good at putting on a brave face and getting myself to work. With my multiple surgeries over the past few years, I only took off the actual surgery day, and sometimes the day after, and was right back to working full time, teleworking if I had to. But today? I had to call out.

I’ve had a rough few days with my joints- could be the weather, stress, something I ate, or the simple fact that Rheumatoid Arthritis is a bully of a disease and will ultimately get its way.

I feel like I failed. I feel angry. Disappointed. Isolated.

But mostly, I feel weak. I feel owned by my body and the diseases that plague it. The physical pain has slowed me today- I don’t feel mentally sharp, I feel emotional.

And I don’t like it.

But have my years of pushing forward despite my illnesses, given me an irrational view of “success”? So much so that needing to take a day to rest makes me feel like I’ve thrown in the towel on working forever?

Society shows “normal” people taking DayQuil to get to that important meeting and taking energy shots to get everything on their list checked off.

Even the latest Enbrel commercial shows a child who “gets his Mom back” after she starts taking the medication for Rheumatoid Arthritis. My daughter watched that commercial and asked me if I’ve ever tried Enbrel (yes).

I try to show the good and bad of my diseases- the injections, the gym triumphs. But I need to do a better job. I need to show days like today- a day where I called out of work and have not moved from the couch or eaten a single thing. Because if someone out there is “pushing through” because they’ve seen my feeds, then I’m doing a disservice to them, my disease communities, and more importantly, myself.

So yes, sure, I failed today. I failed to push myself to go to work despite horrible pain and stiffness. I failed to hold back my tears and act like everything was fine.

Rheumatoid Arthritis Type 1 Diabetes

I am afraid of my body.

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My system (used here to reference my entire being- mind, body, and soul) is a mess. It’s as if my body and mind are two separate organisms who used to be friends but now barely utter a “hello” when they see each other.

I find myself constantly tiptoeing around, afraid to set off the bad temper my body has. I slowly get dressed, pulling on compression socks in slow motion as to not upset my already very sensitive leg muscles. I sleep in compression tights in hopes of not waking up in serious pain throughout the night.

I snack on pretzels all day long, starting early in the morning as I drive to work. I try to have something salty in my stomach in hopes that I won’t find myself vomiting, seemingly out of nowhere. I chug electrolyte enhanced water, even when I’m not thirsty at all, to try to appease my body and it’s abnormal sodium need.

My mind gets angry when my continuous glucose monitor beeps incessantly while I’m trying to sleep. My blood sugars are rising and falling without much warning lately.

The unpredictable nature of my body lately, especially the violent vomiting, has my mind feeling so many emotions. I’m fearful of the intense pain that I’ve been feeling lately. I’m nervous that I could vomit in the middle of the grocery store, without warning, especially since I just got quite ill at work and am still embarrassed. I’m frustrated that others take their good health for granted. I’m sad that this is the body I’ve been dealt with.

But I’m also proud. I’m proud that I am still working full time with additional advocacy work on the side. I’m proud that because of my illnesses, I’m raising two very empathetic children who understand that a lot of diseases are invisible. I’m proud that despite the pain and vomiting, I still make myself go to the gym a few days a week for a pretty intense workout. I’m proud that I’ve created this outlet to share my life so I can connect with others and show them that they are never alone in the battle with their own body.

Rheumatoid Arthritis

Is your medication still working for you?

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Like a lot of people with multiple chronic diseases, my medication list is long. Some medications, like insulin, are a no brainer for me- they are absolutely necessary. But sometimes I find myself wondering if I still need everything on my list.

When my rheumatologist realized I was losing a lot of time to my methotrexate “hangover”, she asked me to try a half dose and see if that made a difference. It didn’t. I still slept away my Sunday. She asked me to skip a week of injecting methotrexate. And we learned, I still slept away my Sunday. And I felt awful without my weekly dose of that magical yellow liquid. So lesson learned- methotrexate helps me and regardless of my medications, my body needs a day each week to rest and do nothing else.

When I started Rituxan last summer, I quickly learned that it is an excellent medication for me. I’ve noticed over the past 3 months that I have less pain. I still flare and have pain in my damaged joints that I need my breakthrough pain meds for. But I’ve wondered if I really need my Butrans patch?

You might be asking- if your pain is controlled and you’re feeling better, why would you want to change things up? When I initially was prescribed Butrans, my pain was a mess. My pain owned me. I was managing multiple medications during my work day to try to keep my pain somewhat under control. My evening breakthrough meds weren’t always able to bring my pain down.

We decided to try Butrans to get a low opioid dose in my system all day, without having to take even more pills. The hope was that this patch would give me enough relief that my breakthrough meds could really help me. And that is exactly what happened.

Since starting on the patch, I had major knee surgery and started Rituxan. I’ve also lost some weight and worked on my diet (still very much a work in progress).

I mentioned discontinuing Butrans to my pain management physician and she agreed with trying to lower my dose or get rid of the patch completely. But she did ask me to get through the holidays and my next set of infusions before attempting a change.

So here we are. Today I’m going to drop my dose down by 50%. If that goes well for 2 weeks, I’m going to try not using a patch at all. Although I’m staying optimistic, I also realize that my pain may come back rearing its ugly head. And that’s ok. I’ll know that my body needs this medication and it’s worth the cost and side effects. I won’t have to wonder if I need it, I’ll know. And knowledge is all I’m looking for.

Hope Rheumatoid Arthritis Type 1 Diabetes

Welcome 2018!

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Hi again! It’s been awhile since I’ve posted and like a lot of bloggers out there, I’m going to promise you that I’ll be writing much more in 2018. Writing helps me tremendously, I feel better when I share and feeling better is always the goal!

When I initially reflected on 2017, the word “okay” came to mind. But as I dove in, I realized that 2017 was much more than ok. Sure there was pain, there were tears, there were doubts, but I’m going to focus on the good things:

Advocacy

  • Attending the HealtheVoices conference for the second time was incredible. I was able to meet even more amazing advocates and because of those connections, I was able to work on great projects like fighting the Obamacare repeal and helping Hurricane victims get the medical supplies they desperately needed.
  • I was invited to Pfizer’s ReAl Talk Summit where patient advocates and bloggers like myself, got to help shape Arthritis.com to help Rheumatoid Arthritis patients get the information they need on a variety of topics, not just their disease.
  • Until my health got in the way, I had the privilege of being a Community Manager and writer for CreakyJoints. I learned so much about how to manage my own site better and I was able to interact with some amazing writers- I really suggest you visit CJ and take a look yourself.

2018 already holds a lot of awesome advocacy opportunities- you’ll see me as an advisory board member for the 2018 HealtheVoices conference and as a steering committee member for the Autoimmune Summit in March.

Rheumatoid Arthritis

  • I started seeing a new rheumatologist in 2017 (mine retired at the end of 2016) and she has been a wonderful fit for me. She values my research, loves to hear about my advocacy, and lectures me on getting enough rest (I really need someone to force rest on me and my body!).
  • By the end of 2016, Simponia Aria was added to the list of biologics that had failed me. I tried adding Plaquenil in March and quickly found out that I am incredibly allergic to it. The positive? I won’t have to wonder if it would have helped me, I definitely know it can’t!
  • Knee Surgery- I’ve posted a lot about this so I’ll spare you the details but this major surgery has given me so much pain relief and freedom. Despite the hard recovery, I don’t regret having it done. My surgeon is hopeful that I’ll get a year or many years before having to have the knee replaced.
  • In July I started Rituxan. My rheumatologist told me that although most people get 6-9 months of relief, she thought I should be prepared to get infusions every 4 months based on the severity of my disease. Rituxan has been wonderful to me. My husband has commented that he sees a “pep in my step” which is something I never would have described myself as having. I didn’t realize how much Rituxan was helping until I hit that 4 month mark and started flaring. I’ve just finished up my 2 infusions and hope that early in 2018 they’ve kicked in and my year will be off to a great start!

Type 1 Diabetes

  • This year I also started seeing a new endocrinologist (my previous left right around the same time as my rheumatologist). Even though I happened upon this doctor by chance, she’s perfect for me. Very tech savvy, considers me an important part of all decision making.
  • I left behind my Medtronic 530G in favor of the Tandem T-Slim with Dexcom integration. I haven’t looked back. I love my new pump, love seeing my CGM data on my phone and watch.
  • I had an opportunity to test out the FreeStyle Libre courtesy of Abbott (blog post about my experience coming soon, I promise!).

POTS (Postural Orthostatic Tachycardia Syndrome)

  • This is a new diagnosis and you might wonder, why is this filed under the good things of 2017? For almost two years, I have struggled with dizziness and a racing heart when I stand. I tried to ignore it but over these past few months, the dizziness was so bad that I would see black spots, vomit instantly (like in the kitchen sink because I couldn’t make it more than a few feet). My heart rate would be 75 when I was sitting and shoot up to 130 just from standing.
  • Once the symptoms started impacting my quality of life (and scaring my husband), I finally called my PCP who sent me to a cardiologist. The good news is that despite Rheumatoid Arthritis and Type 1 Diabetes, my heart is great! The other good news is that even though my symptoms haven’t improved at all, I now have a name to what I’m fighting (POTS) and have an appointment to see a great specialist in March.
  • Although this condition is incredibly hard to manage, I’m hopeful that I’ll see some improvement in 2018. I also plan to write about my experiences as it’s been hard for me to find a lot of patient advocates/bloggers sharing their stories.

General Wellness

  • In October, I decided to get serious about my overall health. I’m happy to report that as of today, I’m down 28lbs and am starting to feel stronger than ever.
  • Losing weight has helped my sleep and has decreased the amount of pain meds I need to take. Now that I’ve seen results, I’m confident that I can keep going, no matter what comes at me.
  • I’m working on managing my diet as well and that’s a big part of my 2018 plan. All of my recent nausea has had me limit myself to only a few foods that I know won’t make my stomach feel worse. As a result, I’m going to work on slowly adding back in foods and seeing how my body reacts. Something I’ve wanted to do since my RA diagnosis.

I’d love to hear about your plans for 2018 and what you learned from 2017, please share in the comments!

Rheumatoid Arthritis Type 1 Diabetes

Here’s your gift bag!

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My husband had dental surgery today. In addition to post op instructions, he received a gift bag. Yes, you read that correctly. A gift bag. I’ve had quite a few surgeries and other than some ace bandages and a pain medication script, I usually just end up with a bill.

The gift bag had things he would immediately need- gauze packs, instant cold pack. It also had a pen, a t-shirt, and a coupon for a free milkshake from Chick-fil-A. Whaaaaaat?! I didn’t have to run out to the store immediately to get him gauze, we had it. And a milkshake? That’s the perfect post op treat- you haven’t eaten in hours but need to get something in your system (my husband has actually taken me to get a milkshake after every one of my surgeries so we had a little laugh about that at the doctor’s office). And what about the t shirt? Yeah, I’m wearing that now- it has a clever slogan about losing your wisdom teeth. Regardless, it’s clean and comfy.

 

How cool would it be if after my knee surgery, I received a gift bag? With maybe a stress ball to squeeze the crap out of (or bite into) when my nerve block wears off or perhaps a whistle for calling my children to help me? And maybe one of those long grabber things so I could reach my lip balm after I drop it on the floor and can’t bend to reach it?

In all seriousness, what would be in your gift bag? And have you ever been lucky enough to receive one yourself?

Rheumatoid Arthritis

The options are: sick or stiff?

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A little background on my RA journey- I was diagnosed in January of 2012, after several months of debilitating symptoms (like having to go down the stairs on my butt, not being able to straighten my arm).

My rheumatologist started me on methotrexate and after six months with no change, we added Humira.

Humira was amazing. I had so much energy, I could walk, and after almost a year, I could finally bend my arm. I am quite positive I was right on the cusp of remission.

Fast forward nine months. A seemingly harmless cough morphed into a nasty chest infection that took months to clear with various concoctions of antibiotics. I ended up with a permanent diagnosis of asthma.

Since my illness in 2013, I tried Orenica. I tried Enbrel. Nothing. I convinced my rheumatologist to please let me try Humira again. I did and instantly got a fungal infection, plus a sinus infection. I even had sinus surgery- desperate to get back what Humira once gave me. It was no use, I kept getting sick.

I moved on to Simponi Aria infusions in the fall of 2016 and gave them a solid nine months to work. Nothing.

It is now fall of 2017 and I’ve had my two loading doses of Rituxan. And guess what? Something! My fatigue got better right away, my stiffness is almost gone, and my pain is more manageable. But guess what?

As of today, I’m now sick for the second time in a month.

To say I’m discouraged would be a massive understatement. I have had Rheumatoid Arthritis for less than 6 years and I am already on my 5th biologic and just had my 5th surgery in June.

I feel that I have to pick between two evils: do I want to live in pain with limited mobility, while this disease attacks my organs? Or do I want to be able to bend my arm and walk down the stairs but I’ll be horribly ill and not strong enough to fight a serious infection?

In short, do I want to be stiff or sick?

Rheumatoid Arthritis

The week I chose to live

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A few months ago I was invited to attend the ReAlTalk conference put on by Pfizer (they paid for my travel & time but that’s all, all opinions are mine). When I was invited, I knew that my heart and mind wanted to attend, but my body? That was another story.

I had and am still having a rough recovery from knee surgery and just daily life with Rheumatoid Arthritis. The thought of going to New York City was exciting yet terrifying. How much pain would I be in? Would my doctors even allow me to go? How would I travel with crutches?

Guess what? I went.

No, I didn’t through caution to the wind and say “forget you Arthritis”! Whether I like it or not, Arthritis always has a vote and if I ignore that, it will rig the election (hmm, let’s not talk about that). But I decided I would be as proactive as I could and use the tools I have- tons of KT tape, compression gear, my braces, ice, pain relief medications, and my crutches.

Between getting settled in my hotel room and our group dinner, I wore my compression socks, filled my ice bucket, and used the fantastic hotel pillows to elevate my legs. I drank a lot of water and made sure I had plenty of electrolyte replacement powder to add to my water bottle.

The next day, I opted to take the provided car to our meeting space (One World Trade, whaaaat?!) which was just a few blocks. I used instant ice packs during the meeting and accepted the offer of a footstool to keep my legs up. When returning to the hotel, I continued my RICE protocol (rest, ice, compression, elevation).

I didn’t always do as well as I could though. JFK is a gigantic airport (seriously, please learn from my experience). I knew this because I came through JFK for my flight in. I had a rough time making it from my gate to baggage claim on Tuesday so you would think I would. I thought I was prepared for Thursday. I wasn’t. I didn’t ask for a wheelchair. Why? I’m not really not sure. Getting to the end of the TSA line was rough and an agent actually lectured me about not getting a wheelchair. She was right. I spent a good 30 minutes standing with my crutches only to make it through security and have a LONG walk ahead of me to get to my gate. By the time I reached my gate, my ankles couldn’t be seen beneath the swelling, my hand ached from pushing through the crutch.

Back to my pride. Wheelchairs aren’t just sitting at the airport for show, they actually work and there are actual employees whose jobs are to push them. There is no reason I shouldn’t have asked for one and I’m disappointed that I didn’t. Please learn from me!

When my husband asked if I would go see Sturgill Simpson with him Friday night, I didn’t think about it, I chose to say yes. I found where the handicap parking was (that I didn’t even know existed) and spent the day doing the RICE thing. I had an amazing time and know how much it meant to my husband to have me with him.

Today, I’m not going to lie, I could be better, physically. But mentally, emotionally, I’m fulfilled. I’m happy. I worked, I traveled, I hugged, I cried, I laughed. I lived.

Rheumatoid Arthritis

Progress Check

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As I’m nearing the 12 week post op mark (tomorrow!), I figured it would be a good time to share how things are going.

Quick background, I had pretty intensive knee surgery back on June 1st. I took off the day of my surgery and the day after but was back to work that following Monday, from home. I’ve been teleworking full time since.

I knew this surgery was going to have one heck of a recovery.

My surgeon reminded me multiple times as did friends who had the same surgery as me. But just because I knew it would be long, didn’t mean I had fully accepted it.

Crutches for months with a full leg brace to keep it fun. I’m now down to one crutch and a smaller brace. And yesterday, I went back to the office for the first time! My surgeon is only permitting me to work two days in the office for the next few weeks. I argued this when I saw him at my last visit but he was adamant- I had to work my way back to my pre surgery activities and doing too much was going to increase my already bothersome swelling and increase my healing time.

And as much as it pains me to type this, he was right.

Ugh. My work day itself wasn’t rough by any means but my knee didn’t care how easy I took things or how elevated I kept my leg all day. My swelling was crazy! My ankle was huge and my kneecap couldn’t be located amongst all of my fluid. And the pain. Whoa. It hurt.

Today I saw my physical therapist and I honestly didn’t want to go to my appointment. Before I went to work, I was moving up and down stairs with an ease I hadn’t had yet. My kneecap was actually in the shape of a kneecap! Barely any swelling and pretty easily managed pain. I had myself convinced that my work day had thrown my progress back weeks. Stairs were so hard and the swelling was still there.

I didn’t realize it but today’s PT visit was progress note day. I was super bummed out when I realized. My therapist checked the strength throughout my leg, measurements for range of motion, swelling, etc. She kept saying “great” as she measured but I assumed she was just being nice (she is SO nice by the way, I love her).

She noticed the expression on my face and asked what was wrong. I told her I felt that things were so bad and really didn’t want to know how bad my report was. She then proceeded to tell me that my range of motion was back to my post op numbers, my strength was awesome (aside from the dreaded quad lag), and my swelling wasn’t measuring bad at all. Whaaaat?!

That report was the exact reminder I needed that with a chronic illness, you can’t let one bad moment, one setback, determine the future. If I let every high blood sugar, every sharp pain, ruin my day, my week, I wouldn’t have any reason to keep pushing on.

So next time you find yourself in a rough spot, pause. This will pass. And the fight alone, is something you should be proud of. It takes one hell of a person to get up every day and battle a chronic illness.

Rheumatoid Arthritis Type 1 Diabetes

#SAVE32MIL

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