The MRI and Australian

I have developed this coping mechanism over the last 3 years–I glaze over and pretend the things that are happening are not actually bad. I think it is good to have a happy outlook but it is hard to keep it up when you find the holes in your wall and you do not remember how to fall apart so you get jumpy instead. Then you have all this pent up emotion and you want comfort but you end up deflecting others affection because “everything is great! I’m great!”.

I had an MRI and a follow-up appointment yesterday.

My veins can be difficult–I am always prepared for a couple pokes when a nurse starts an IV. Yesterday I got more than an extra poke. The nurse put heat on my arm then made her attempt. She penetrated the skin with the needle, fished around (so painful), wasn’t sure what she got, then, instead of pulling out and making a second attempt, she injected it with saline. That did not work. Blood ran down my arm and dripped onto the floor. She got another nurse to make the second, successful, attempt. I have this strange, square, lumpy, bruise now. That was my worst IV experience. Do not inject saline under my skin, please!

IV in place, I was ready for the MRI. After an hour of “take a deep breath, let it out, don’t breathe” in a tiny tube, the tech pulled me out of the machine and injected contrast dye into my IV. Dye flowing through me, I then got to “take a deep breath, let it out, don’t breathe” while feeling like I am peeing myself in a tiny tube for 30 more minutes. Cardiac MRI’s are not fun.

I then met with my cardiologist. “We are in check, aren’t we!” he stated in his Australian accent. He wants to get me off the prednisone because I am in pain, I have gained a lot of weight, my moods are too moody, and I am miserable. We did not get anywhere with my appointment because we are at a standstill. He is going to speak with a pericarditis specialist (he’s one of only two specialists in the U.S.) in Cleveland about beginning methotrexate-Treats several kinds of cancer, including cancer of the blood, bone, lung, breast, head, or neck. Also treats rheumatoid arthritis and psoriasis (a skin disease).. He doesn’t want to treat my pain because he wants to repair, not mask, my pericarditis. So, we raised my diuretic in hopes that will alleviate some pain due to water retention.

He will call me next week with where we go from here. I know some day this will all be behind me and I will have better things to write about. For now, I wait!

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I went to the ER on Sunday. The left side of my chest had been hurting for a couple weeks and then on Saturday and Sunday I was breathy and lethargic. I did not want to go to the ER. I knew what they would tell me and I did not want to hear it, but my mom insisted we go.

We are lowering my prednisone dose because I am having miserable side effects (mood swings, severe depression, weight gain, my teeth ache, and more). The prednisone is to treat the pericarditis that occurred after my surgery. My doctor was worried that lowering my dose would make the pericarditis come back.

I knew they would tell me the pericarditis is back. I was right. I was put on 1200mg ibuprofen a day and instructed to up my pred from 15mg to 25mg if the pain hasn’t gone away in 24 hours. It’s been more than 24 hours, I’m still in pain and breathy. Tomorrow morning I will up my prednisone.

I have been taking one step forward and two steps back for the last 4 months. None of this is easy and I don’t see it getting any easier in the near future. I have an MRI and doctors appointment in Portland on the 16th. Fingers crossed they have something encouraging to say.

Keloid

I keloid– A keloids is a growth of extra scar tissue where the skin has healed after an injury.

My scar looked so good the first couple of weeks–flat, smooth, small, as perfect a scar can be–then it began transforming. It is now raised, pink, stretched, wider at the bottom than the top, and it just looks so much like a worm!

I can handle the appearance. As one friend put it, “It looks like you have really high cleavage.” I took it as a compliment…

What I can’t handle is the itching and burning. It began 2 months ago. I thought it was because I started working out so I took a 2 week break. It didn’t help.

I realized it was the scar making its presence known. It will not be forgotten; it keeps me up at night, it hunches me over during the day. This evening I want to cut it off of me and let it burn for real. But that is crazy and disgusting, so, instead, I’m going to buy some tea tree oil and hope it’s insistent nagging will cease!

Working on it.

I am 3 1/2 months recovering. Working out is going well…

I have bad days; days I can’t do a full workout; days I get my “workout” getting dressed; days 6pm feels like midnight. On those days I feel impatient and as though this slubby body will never stop being slubby (I made up this word because how I feel has no description but just know “slubby” is not a good thing).

Then I have days where I feel like a superhero-“I can run! I can jump! Weights!! I can do weights!! Look at me! Wee!”-I may be having a prednisone induced manic episode but at least those days are encouraging and keep me going.

Recovery is hard. I’m tired more than not. I’m trying to be patient with my body.

Prednisone: 15mg

My Stroke: Part Two

I did not have to wait long. My dad and two younger brothers arrived first. I can’t remember what they said, I am sure there were questions. I asked my dad to get the jeans I had taken off minutes, maybe hours, before–I am not sure how long I was battling my brain–I could have checked my phone to see what time I had spoken to my mother, since we had talked right before, and figured out the time passed but I didn’t.

I had not moved from my position on the floor. I remember rocking my chair back and forth as I waited. It was soothing to focus on the simplicity of its movement. I had my dad put my jeans on me but did not bother with buttoning them. I bent my legs and lay on my back with an ankle on a knee–that was soothing as well. I felt normal again.

The volunteer fire department arrived before the EMTs. My two older brothers, the firefighter and the east-coaster, had been residents for the volunteer department, so I knew, or at least recognized, most of the men huddled over me. They checked my vitals–blood pressure cuff went on, pulse oximeter was placed on a finger, electrodes were stuck to my chest for an EKG, temperature was taken, lights were shone in my eyes, I followed fingers, questions were asked (my speech had returned to me). They could not find anything wrong with me. What made me most uncomfortable was how serious everyone was. I tried making a joke but nobody laughed. I wanted someone to at least smile.

The EMTs and my mother showed up soon after the volunteer had finished checking my vitals and the EMT checked me again. He could not find anything wrong either. Something serious had happened, though; I had the rug burns on my arms and knees along with my mother who heard my slurred speech to prove it. They gave me three options- go to my parents home and have them monitor me the rest of the night, have my parents drive me to the ER for further testing, or have the ambulance take me to the ER for further testing. My parents decided for me, they wanted the ambulance to take me. I was asked if I could walk to the porch before being put on the stretcher and I said I might be able to with help. The EMT and a volunteer supported me on either side and we made our way outside where they set me on the gurney.

The process of being pushed to and placed in the ambulance was bumpy but I was okay. “Do you know my brother?”, I asked the EMT as he was trying to start an IV. He did and he joked about how my brother would have been able to find my difficult veins the first poke. I was rolled through the ER doors and set up in a room. I said goodbye the EMT and waited for my parents.

I was asked to put on a gown and given hospital socks with grips on the sole. The first thing I was asked to do is pee into a receptacle. The nurse helped me into the bathroom, placed the catcher in the bowl, and set me on the toilet. I think I peed, I have a hard time remembering because it was while I was sitting on the toilet that I started throwing up and could not stop. I pulled the “help me” string and grabbed the trash can in the corner. She waited until we thought I had finished and helped me back into bed. I was not finished. I threw up a total of 12 times before the anti-nausea medicine they gave me kicked in.

They began tests- blood drawn, EKG, CAT scan, chest x-ray, they had me walk. They concluded that I had vertigo, gave me more anti-nausea pills, and was sent home with instructions to follow-up with my PCP.

My parents took me home. My diagnosis did not feel right. We, my family and I, were nervous. I felt fragile. My surroundings didn’t feel real. I was tired.

Two days later, on my way to the PCP, my ER doctor called, “I have been thinking about you a lot and I don’t feel right about your diagnosis. I recommend you getting an MRI.” He didn’t give any other theories about what may be going on with me, just wanted to make sure I pursued more tests.

I told my PCP what happened and asked him to refer an MRI. He agreed. The MRI was scheduled a week out. I was scared. I didn’t want to have to wait a week for an MRI. I was beginning to feel like a ticking time bomb, but I resigned myself to wait.

It was that day or the day after that my mom talked to my brother, the EMT, and told him the next steps. He was not happy about the long wait for the MRI and told us to call and demand my MRI get moved up. He said they will be able to get me in, I just need to be pushy. Sure enough, they rescheduled my MRI for two days later.

-To Be Continued-

Costco and Prednisone

I consider myself a patient woman. I try to be kind, helpful, and forgiving. I hold my tongue…most of the time. I can admit when I’m wrong. I will “turn the other cheek”. I am a good person! I wanted to toss my moral “high ground” out the window yesterday and curb stomp a fool!

Costco is busy–especially busy this time of year. Yesterday I wanted a $1.50 hotdog (don’t judge me!) and decided to brave the masses. The parking lot, as can only be expected the week before Thanksgiving, was full, so I did a circle looking for shoppers packing their cars. It did not take long to spot someone putting the last box into their trunk and returning their cart. I put on my blinker and waited. The person plopped into their seat, started the car, backed out, and drove away. I let go of my brakes, letting my car roll forward, and was about to touch the gas when to my right I saw a Subaru run a stop sign–he nearly clipped me and stole my spot. I was shocked! I honked and honked then I drove forward because he was not safe with me near him.

I did not run him over or do anything malicious. It was scary how much I wanted to, though. There is an angry lady inside me and she made a BIG appearance yesterday. It will be great if I can get through the next few months without murdering anyone! Thank you, prednisone, for the ‘roid rage! 😁

Prednisone Diaries 2

Day 64:  The Prednisone dose has been lowered from 40 mg to 20 mg since my last pred post. I do see some improvement– the manic sensation I was having has stopped. But without the manic high I would ride every few days, I am left in a dense fog of depression. At least I could feel when I was manic.

How does a 24 year old female who is jobless, recently “single”, living at home, on a mind numbing steroid, with low self-esteem because of recent weight gain (that she cannot get rid of because of the *&#*ing steroid!), recovering from her 2nd open-heart surgery, not sleeping well at night because of sternum pains, pull herself out of a crippling depression? I am at a loss.

I do have enough of the old Heidi left in me to know I am lucky to have and be living my life– My family has been a huge support the last 3 years. I survived a stroke and 2 open-heart surgeries, and everything that came with the 1st surgery. I have friends who love me. My heart, now, works. I am grateful. There is just very little joy to go with that feeling of gratefulness.

I have not been able to continue my last post. It was difficult to write the little bit I did– unearthing so much pain. To combat this depression I am making a promise to myself to post, at least, once a week. I want to continue my story. At least I will be feeling.