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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

Savor

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This morning I plugged a few numbers and answers into a form on JDRF.org and was presented with this:
Whoa. These numbers are estimates, they don’t include rollercoaster days and nights where I’m not sleeping and pricking my finger over and over.

They also don’t account for my life with Rheumatoid Arthritis. The injections, the blood tests, the pills, the infusions, and the time, not just sleep, that I’ve lost to pain.

They don’t account for the cost of medications and copays, the countless hours spent in doctor’s offices. And the time I spend worrying about my diseases now and what life will look like with them in future.

When I look at this, it reminds me that life is hard. Really hard. If you are in good health, savor it. Enjoy your sleep, your freedom. Appreciate your life, every minute of every day. Because, like my diagnoses of Type 1 Diabetes and Rheumatoid Arthritis, poor health can come out of nowhere.

Rheumatoid Arthritis

As Good As It Gets

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Ever since I was diagnosed with Rheumatoid Arthritis, 3 years ago, I’ve had a burning question. A question that I’ve really wanted to ask but that I also really didn’t want to have answered:

“Is this as good as it’s going to get?”

Over the past 3 years I’ve been on different injectables, pills, creams, etc. Some are supposed to reduce my disease’s activity, others should take away pain.  Currently, my injectable, Orencia, seems to be working. I’m not noticing any new pain, stiffness, or swelling which means this medication should be reducing the disease activity in my body. This is a good thing. The only problem is that all of the damage done while I was waiting for a diagnosis years ago and all of the damage done a year ago when I was too sick to take any rheum meds, is just that, damage. It’s damage that I thought could be repaired. It’s damage that ,until I asked my rheumatologist that question, I thought was temporary.

During my most recent visit to my rheumatologist, at my usual 3 month follow-up, we discussed the effectiveness of Orencia and how we both thought we should give it a little more time to see what we can get out of it (I’ve had 30 weekly injections thus far). She then said, our goal right now is pain management and quality of life. Huh? That’s it? To me that sounds like giving up, so I had to ask: “Is this as good as it’s going to get?”. Is my elbow going to ever get better? Is it going to hurt for the rest of my life? Will I feel good enough to exercise one day and without reason, feel like I can barely walk from the car to my front door? Will I never sit cross-legged again because my left knee is so stiff? Will compression gloves and a knee brace be a permanent part of my bedtime attire? 

The questions poured out. I expected my doctor to sugarcoat things with lines like “we’re going to fight this”, “there are still plenty of medications we haven’t tried”, etc.  She didn’t. She said yes, my elbows would probably hurt forever. And my feet, hands, and knee probably would too. The damage was done before I was even diagnosed. 

In all honesty, her answers didn’t shock me but they definitely were a reality check. I’m 35 years old. I have a husband and two children. I have things I want to do and places I want to go. No amount of work or hope is going to change my joints but I can definitely change my mind-set. Some days are going to be hard, I’m going to need to rest, dinner will be thrown together, and that’s ok. Other days, I’m going to be dancing in the kitchen and making my children laugh hysterically while I attempt to rap. 

I’m hoping for more kitchen dances. 

Kittens

Choices

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I finally had allergy testing done today after years of medications, infections, and countless sneezes. I had the standard (I’m assuming) 59 pricks done to both of my forearms. Am I allergic to the standard outdoorsy culprits? Yup. Am I allergic to cats? Yup. Wait. What?! Yes, I’m allergic to cats.

I’ve always had a cat in my life since I was born 34 years ago. In the summer of 2013, we got George, JungleGeorge. He was four months old and the cutest thing ever. 2013 was a rough year for me medically. My rheumatoid arthritis was (still is) rearing it’s ugly head, I had a horrible infection that lasted from March to September, and was also diagnosed with asthma. All while still pumping insulin to manage my Type 1 Diabetes. Through it all, I had George. He laid next to me for countless hours while I tried to rest as much as possible. He didn’t (and still doesn’t) judge my never-ending Netflix streaming.

Months later he continues to bring me, and the rest of my family, tremendous joy. He joins me for breakfast each morning, sits right in the middle of my yoga mat at the worst times, greets me at the door when I get home, and sleeps at the foot of my bed every night (and only bites my feet every once and awhile).

Today the allergist said, “no more cat in the bedroom” and to “limit my contact as much as possible”. I initially decided I would abide, told my husband and kids the bad news. They were heartbroken (maybe that’s too dramatic of a word, but let’s go with it) for George (and maybe a bit for me)..he inevitably would sit outside my door and cry all night long.

And then I thought about it. Was I going to avoid the cat who does nothing but want to make me happy , all because of a single prick of my skin? Was I going to upset him by not petting him, brushing him, letting him sleep with me? Was I going to give up the one thing that gives me comfort in the middle of the night when I can’t sleep because I’m in so much pain? No.

At some point, you have to take your doctor’s advice, do a little research/thinking of your own, and then make a decision. Have my allergies changed at all since getting George? Do I feel even the slightest bit different when he’s near me, when I hold him? No. Did I have asthmatic symptoms before George? Yup. Did they change after getting him? Not at all. If I hadn’t gone to the allergist today, would I ever have considered getting tested for pet allergies? No.

So Jungle George will continue to sleep at the foot of my bed as long as he wants (or until my husband knocks him off), whichever occurs first.

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Type 1 Diabetes

Obligatory Venting Post

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Yesterday at work, I was speaking to a parent on the phone. The parent mentioned that his child was pre-diabetic and then proceeded to say “I’m sure you don’t know much about that”…hmm. I immediately told him that I was actually quite familiar with diabetes as I have had Type 1 diabetes for 25 years. His response floored me:

“Wait. You actually work?” Yes.
“Full time?” Yes. “You went to college too?” Yes.
“So you have diabetes and a job?” Yes.
“Wow. That’s not normal. I guess there’s hope.” Uhh..

Type 1 Diabetes

National Diabetes Month

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Every year, JDRF, the Juvenile Diabetes Research Foundation, offers a really neat opportunity. People without diabetes can register for a text campaign which will help them to understand a bit more about what life with Type 1 diabetes is like. (I’d love it if they actually had some sort of pill or device that would allow someone to feel low and high..the “feelings” of diabetes are hard to describe to someone who is generally pretty healthy- this campaign is a great start though). Click on the image to sign up. T1Dcarousel

And while you’re at it, consider starting a team for the JDRF Walk to Cure Diabetes. You’re more than welcome to join or donate to my team too! 🙂