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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 Type 1 Diabetes

It’s Not Pretty

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This is what I look like after:

  • Spending my commute screaming f*ck because the sciatic pain was at its worst
  • Trying to work all day with a fever
  • Being unable to get my blood sugar down because the pain is causing it to rise
  • Drinking a ridiculous amount of caffeine so I don’t fall asleep driving home later
  • Sitting on an ice pack all day because I can’t get my back to stop hurting
  • Getting ready to drive home with my sciatic nerve feeling like someone is stabbing me up and down my leg

Just living with Rheumatoid Arthritis and Type 1 Diabetes is hard enough but working full time and caring for a family is a battle a lot of patients, like me, fight every day.

I’d be disrespecting myself and my community if I only showed my “good” photos and didn’t share my struggles. So here I am. It isn’t pretty.

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Rheumatoid Arthritis

Invisible

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I’ve had Rheumatoid Arthritis for a little over 4 years. In those 4 years, I’ve had plenty of good days and bad days. I’ve had my share of days where I cried on the way to work, in the bathroom at work, and on my way home because I felt so awful. I’ve had days where I’m exhausted from acting like everything is fine. Because explaining how bad I feel sounds even more exhausting.

Unless you’re my husband, you probably never noticed. But when I recently had knee surgery, I got noticed (yes, I’m a very awkward crutch user). I was (and still am) constantly offered assistance. Everyone has been overwhelmingly supportive- from making sure I don’t walk too much, to offering to fill up my water bottle. I feel incredibly blessed to have such supportive coworkers, friends, and family surrounding me.

But (you could feel a “but” coming, couldn’t you?)- as my knee gets stronger and I spend less time relying on my cane, my Rheumatoid Arthritis disease is still rearing its ugly head. But you can’t see it. It’s still giving me a daily fever, making opening a water bottle excruciating at times, making my body feel like it constantly has the flu. The tears are still falling. But you don’t see them.

Having an invisible disability that for a few months was made somewhat visible is rough now. To know how much support was around me, without having to ask for it, was awesome. It was absolutely incredible. As a fiercely independent person, I hate to admit that I’m going to miss the support. It seems like people think that because I’m stronger, because I’m more mobile, that I’m better. The truth is, my knee is better. My disease is not.

Family Rheumatoid Arthritis

An Interview with my Husband

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Yesterday, I shared a brief interview I did with my daughter. Today it’s my husband, Sean’s, turn. Sean and I have been together for a long time (17 years) so my Rheumatoid Arthritis diagnosis (2012) isn’t something he signed up for. I’ll let his answers speak for themselves but I will say that never has Sean doubted my pain. He’s never doubted how I feel and supports me 100%. He would do anything for me and I consider myself very lucky to have my best friend not only beside me going through life’s ups and downs, but beside me while I battle this jerk of a disease.

 

 

Do you ever feel frustrated or angry that I have Rheumatoid Arthritis?

Angry that life has dealt you a seemingly unfair hand.

Are you ever scared that our children will develop a chronic illness because they have my genes?

I’m not scared but certainly concerned.

Do you understand my disease? Are there questions you want to ask but haven’t?

I understand it well and have no questions.

How does your wife having RA affect your outlook on life?

My outlook has not changed.  I am concerned about the future.

Is there anything you miss from before I was diagnosed?

Yes.  There are physical limitations and considerations that must be accounted for when planning events.  We used to playfully wrestle.

How is/will your life be better because of your first hand experience with a chronic illness?

I am more informed and empathetic towards other who may suffer from RA.  I can offer advice and support if need be.

How would you explain Rheumatoid Arthritis to others?

Having the flu constantly with extreme pain in your joints.  An extreme loss of energy.

Are you concerned with my ability to continue working?

Yes

What do you perceive as the worst part of living with Rheumatoid Arthritis?

As a spouse of someone with RA, the worst part is watching the person you love the most suffer.  Watching them inject themselves with chemicals that hopefully reduce the suffering all the while knowing it is harmful.  As far as the person who lives with RA themselves, I think the hardest part would be the sudden change in ability to perform simple tasks.  The inability to keep pace with the normal world and suffer with unrelenting and unpredictable bouts of pain.  Feeling alone and not truly understood.

Rheumatoid Arthritis Type 1 Diabetes

It Must Be

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Growing up with Type 1 Diabetes, I was always aware of how I felt and if those feelings were due to my diabetes. Did I feel dizzy? Thirsty? Tired? Confused? These could all be easily attributed to a low or high blood sugar. Once diagnosed with Rheumatoid Arthritis, I added more physical feelings that I could attribute to my disease. Pain, stiffness, muscle aches, popping, cracking, etc. I am constantly putting those feelings into a bucket- the diabetes bucket and the RA bucket. Occasionally there is the “normal human” bucket where a cold, for example, might fall but even the normal bucket spills over into the disease buckets.

what-are-the-symptoms-of-ebola-because-i-am-pretty-sure-i-have-some-of-them-like-this-itchy-index-finger-f72f0

Being a parent to children who currently don’t have any major health issues when I do, can add a strong element of fear to my life. I question everything- “Didn’t he just go to the bathroom twenty minutes ago?” Must be diabetes. “Her knee keeps hurting, yet nothing happened to it.” Must be arthritis. “She keeps sleeping in on the weekend.” “His hands are really achy today.”

No, I don’t spend all of my time analyzing their every move or every sip of water they take. But these little thoughts pop into my head from time to time. Is there anything I can do to prevent one or both of them from developing an autoimmune disease? No. So why harp on it? Because I don’t want them to suffer. Of course I don’t want them to suffer having a disease, that’s obvious. But what I mean is that I don’t want them to suffer through waiting for a diagnosis. With Type 1, my parents were repeatedly told that I had a virus, to let it go. My father, a type 1 diabetic himself, eventually had enough and tested my blood sugar at home. I was immediately hospitalized. With Rheumatoid Arthritis, I spent months going to multiple doctors, telling them something was wrong, only to be told that I had tennis elbow and was favoring my joint. It took me not being able to walk anymore for someone to take me seriously and run a battery of tests. I don’t want my children, or anyone, to experience that fear, that unnecessary pain or stress on their body.

So if I can’t control who will get which disease, what can I do? I can advocate and educate. I can share my diagnosis stories, my disease symptoms, with anyone and everyone. I can share what I’ve been through and what I’ve learned with parents, doctors, friends, family, strangers. I can empower my own children to research their concerns and know that every question they have is important.

Favorite Things Rheumatoid Arthritis

MedNexus Review

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**This is a sponsored post- opinions expressed are based on my own personal experience**

If you’re like me, you may have found your first visit to a physician, especially a rheumatologist, a little overwhelming. I left my first visit with pamphlets/brochures about RA and medication options. My doctor told me that he knew I would go home and immediately go to google.com..he asked me not to but said to please share with him anything I had looked up so he could weigh in.

I won’t tell you what comes up when you google a disease. You’ve probably done it. And if you haven’t, I’d be willing to bet that you have looked up your health symptoms before. Sore throat, fatigue? Must be cancer, right? No! It’s hard to find quality information and to not have to spend time wading through articles and sites that have nothing to do with what you initially searched for.

This is where MedNexus comes in. MedNexus is a medical search engine that promises to provide greater accuracy and clarity. Their engine selects the most clinically-relevant and useful content for you.


One of my favorite things is the MedNexus homepage. Simple and easy to navigate. I don’t have to waste time looking for where to begin my search. I wanted to search “Rheumatoid Arthritis”.

When you initially start typing in your search criteria, the site starts listing questions that are relevant to your disease. Similar to Google’s autocomplete function, this can help you answer questions you hadn’t even thought of yet.

Upon searching for RA, the following questions started to come up:

  • What is Rheumatoid Arthritis?
  • How do you diagnose Rheumatoid Arthritis?
  • How do you treat Rheumatoid Arthritis?
  • What are lifestyle tips for Rheumatoid Arthritis?
  • and many more..

If you ignore the suggested questions and just search, your results come up. Search results are broken down into the following categories:

  • Health Topics- general information from trusted sites
    • Joint Deformities in Rheumatoid Arthritis (Arthritis Foundation)
    • Rheumatoid Arthritis Remission, Rheumatoid Arthritis Pain, Rheumatoid Arthritis Complications (Rheumatoid Patient Foundation
  • Published Research- links for publications written by physicians
    • HIV/AIDS and Rheumatoid Arthritis (Autoimmunity Reviews)
    • STAT4 and the risk of Rheumatoid Arthritis and Systemic Lupus Erythematosus (New England Journal of Medicine)
    • Biological Drugs and Risk of Infection (The Lancet)
  • Forum Discussions- health websites with forums- user opinions
    • Insurance Quotes for RA Sufferers, Painful Feet Advice, Diagnosis Delays (Arthritis Care)

Prior to viewing your search results, one of my favorite features appears:


Overall, I find MedNexus to be a wonderful site. I like that search results come from reliable sources and can be filtered into categories that make sense. I hope that you’ll visit MedNexus and please keep in mind that the site hasn’t been up for very long, so they are constantly adding additional medical conditions.

If you’d like to give MedNexus your feedback, please click here to take a short survey.

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? 

Rheumatoid Arthritis Type 1 Diabetes

Vicious Cycle

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Type 1 Diabetes and Rheumatoid Arthritis are enemies battling within my body.  I took my methotrexate injection last night. As expected, today has been rough. Here’s what I’ve accomplished:

  • Slept last night for 10 hours
  • Kids brought me eggs in bed which surprisingly tasted great (because I’m nauseous, not because of their cooking!) and then I took a shower
  • I sat down on my bed, in my robe, and woke up an hour later
  • Got dressed (sweats of course) and went to the store for a few things
  • Came back, slept for another 4 hours
  • I’m trying to stay awake for two hours and maybe have something to eat before going to sleep for the night

My blood sugars don’t like this exhaused state that I’m in. I can’t exercise and have barely moved around. I have 1,855 steps for the day right now and if you follow me on Twitter, you know that’s a really low number for me! Because I haven’t moved or eaten, my blood sugars are high. Common sense would say that if you haven’t eaten, your blood sugar would be low, right? Nope. 

Other days, I have the opposite problem. Having a busy day at work and/or exercising keeps my blood sugars in optimal range. BUT, all of that movement pisses off my Rheumatoid Arthritis and I have a ton of pain during the week. Some of my pain medications tend to raise my blood sugar (in my opinion, the stronger the pain med, the stronger the chance my blood sugar will go up after taking it). If your blood sugar is too high, exercise is a bad idea! 

Oh to have just one of these autoimmune diseases…I’d pick Type 1 Diabetes over Rheumatoid Arthritis every time. How about you?