The Reality of Life with a Chronic Illness

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[Image shows three spoons on a laptop keyboard. Overlaid is torn white notebook paper with a red paper clip. In black text on the paper it says, “The Reality of Life with a Chronic Illness”. There is a picture of a loop recorder and a bard power port in the bottom corners of the paper. And it the bottom left corner is the Thee Crohnie Grace blog logo.]

This week has been a rough week for me, I started with a cold and ended it with surgery and my Entyvio infusion. My electrophysiologist had decided at our last appointment that with how high my heart rate was getting (190+) that he wanted to monitor my heart more regularly. He suggested a loop recorder, a chip that is inserted under the skin to monitor the heart. For many it is placed under conscious sedation but he only uses lidocaine shots and no other drugs. When I mentioned to him that because of my EDS that local numbing doesn’t always take on me, he insisted that connective tissue disorders have nothing to do with numbing and that lidocaine works on EVERYONE.

Luckily, when I got the hospital for the procedure Thursday the nurses at the Cath Lab recognized me almost immediately since I’m there frequently to place my NJ tubes and they have come to know me as “the girl who places her own tubes”.


[Image shows my legs crossed and feet bend inward with my hospital gown with blue and green diamonds on it. My feet have purple and pink ankle socks on them.]

When I mentioned to them my anxiety about the numbing not working they basically said screw what the doctor said, you’re one of our favorite patients and if you need something we will help you. So they got a higher percentage of lidocaine and also gave my dilaudid and fentanyl to help calm me down. Sadly it didn’t do much.


[Image shows me in a hospital bed, there’s an IV pole behind me with two bags hanging from it. I’m resting my hand against my face and have my glasses on and am wearing a hospital gown.]

After an hour or so another nurse came in and actually explained the procedure to me, something the doctor had not done. They brought in everything into my room, not taking me back to any OR or anything. They cleaned my chest off with betadine and alcohol.

It was then that they pulled the screen up to keep me from seeing what was happening, which only made me panic more. I was upset at the doctor for being rude and not listening and I was upset that everyone kept telling me I shouldn’t worry because it was just a simple surgery or being told by a doctor who had never gotten a tattoo that if I could handle a tattoo, then I could handle this surgery. They gave me a couple shots of lidocaine which I felt all of, and then a sharp pain and burning which took my breath away as he cut an incision into my chest above my tattoo. I started hyperventilating from the pain and couldn’t make out words or full sentences from the pain and also from the panic. I felt terrified, in pain, and embarrassed by my reactions.

Once it was over they glued the incision and patched me up with some gauze and IV3000 because the nurse remembered that I had sensitive skin to other adhesives.


[Image shows a picture of my chest, you can see my previous scar from my port surgery, my phoenix tattoo and then a bloody glued up incision above the tattoo.]


[image shows me with my glasses pushed up onto my head, wearing a hospital gown with orange betadine stains, my mom is sitting behind me in a jean jacket.]

My mom helped me calm down before we left and went to drop off my prescription for some pain medication. Friday went by fine, minus some pain and discomfort and some feelings of nausea but nothing too bad.


[Image shows me in a grey tank top, my feeding tube unhooked and hanging down, my chest is taped up with a small piece of gauze over my incision, no glasses on.]

Saturday I woke up bright and early for my Entyvio infusion, my plan was to get my infusion, change my surgical dressing, and then go to the comic convention that was taking place at our local art centre. I woke up with a fever but otherwise feeling just fine.

[Image on the left shows me with my makeup done, no glasses, in a black lacy top with my Mjolnir necklace, under the lace you can see my tattoo faintly and the gauze over my incision site. Image on the right shows a white thermometer on a blue, white, and yellow bed cover, the thermometer reads 101.8]

My home health nurse got there around 11 and we went to change my surgical dressing first since it was covering the access point of my port. As she changed the dressing the glue fell off and the wound opened and began to ooze. Leading me to freak out a bit. She tried to access my port once we got it recovered. Twice she stuck me and while it was in the port, there was no blood coming back when she pulled on the syringe.


[Image shows me visibly upset, holding a dressing onto my chest, my black shirt unbuttoned to access the site.]

After the second try and seeing that the wound was oozing through my new dressing, we decided it would be wise to go to the ER and get it checked and that she would come back tomorrow and we could try again.

So my mom and I headed to the ER, expecting them to close the wound with stitches or something.

[Image on the left shows me with my glasses on and face being covered by a medical mask, my hand still on my chest. Image to the right shows me in the emergency room with a gown on.]

Due to the fact that the flu is rampant right now, my mom made me put on a mask to keep me from getting anything from the other people sick at the ER. Once we got back the nurse said all they could do for the opened surgical site was clean it out and bandage it, that they weren’t allowed to close it once it reopens because it would risk sealing in something that would lead to an infection.


[Image shows my from half the face down to the top of my chest, my dressing has been taken off and there is a small incision gaping open in my chest above my tattoo, my feeding tube is hanging down across my chest.]

So they patched me up and sent me home, they didn’t do labs, or anything except slap a bandaid on my open wound. And with that I had missed the first day of the comic convention. So I went home and slept for a while and anxiously awaited the next day when my home health nurse would be back to try to access my port again for my infusion.

So today I woke up, my chest itching and covered in red patches. So on top of my pain medicine, I also took some benadryl to help with the rash all over my chest.


[Image shows me in a dark green tank top, my tattoo and Mjolnir necklace showing, and my incision covered with special bandaids, my chest covered in red splotches all over.]

And then we waited for the nurse to come back, we set everything up, she tried to access my port again and still no blood draw. So she got a different sized needle and tried a second time, still nothing. Determined though to not get stuck again and also to get my port to work because it needed flushed regardless of whether or not I got my Entyvio infusion.

So she had me raise my arms, lay on my side, lay back, turned the needle every which way, until finally after 30 minutes or so of digging around and trying to find the perfect position, we finally got blood return and was able to flush the port. So she flushed it with heparin before we started the infusion just to be safe.


[Image shows a black and white picture of me laying back, with my glasses on, necklace laying off towards the side and port accessed and taped down.]

By the time everything got finished today, I had missed the second day and final day of the comic convention. It has been one hellish week and I will be so thrilled when things ease up, but it has been a good example of how no matter how simple a surgery is, it’s still surgery, there are still complications that can happen, and pain is pain. And this is just the average life of someone with a chronic illness.


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