chronicsister

[chronicsister]

What a day…

Today, well this week, is my most heavy testing… today was basically an all day fasting day… not great to do with my condition but what can you do when appointments are limited…. Woke up stress test, heart rate and blood pressure, through the roof…. Next brain MRI for my neurological condition… everything was going fine. Until I my last session with contrast… welp let’s just say when I was done with everything and about to get in my chair, I passed out on my nurse. Literally ON my nurse. Spent another 30-45 mins trying to be decent enough to leave while telling my husband I need to go to the ER… but we know how ERs go. They pump me full of fluids and kick me out…

But on a side note fun question for you all.

[chronicsister]

Moving Part 2

We are basically in our new home. We still have some small things left at the apartment, but that can be dealt with in one day. We are still trying to unpack and organize the house but today is a rest day. I need it, he needs it. We have been moving nonstop this month from little renovations to moving. Through this whole process I have been in a minor flare up so it has been exhausting to say the least. I cannot wait until my classes start back up and the office is back together so I can find a streaming schedule again.

[chronicsister]

Moving day part 1

So today we started moving into our new home. We had a trailer and made three trips… and can I say it has wrecked me…. We have another full day of moving, unpacking and cleaning (up the old apartment). But hey the movers come on Monday for the extra big stuff like the couch the beds etc. I am exhausted all my spoons are gone and then some. I don’t think I will have any energy tomorrow and we still need to move stuff from the main floor of the house to the upstairs. I’m going to be on my ass on Tuesday… and my doctor isn’t going to be happy.

[chronicsister]

Everyone who suffers from a chronic illness, chronic pain, or mental health knows the feeling of being exhausted. We know the pain and terror of an unexpected day. However, surviving the day can make on seem like a burden to others, but that isn’t the case. Surviving is showing one’s strength, bravery, activism, and sharing life with others. You are not your illness, your pain, your mental health. You are YOU! Beautiful, handsome, strong, brave and nothing can change that.

[chronicsister]

Moving Will Always Be Difficult

It’s been a while I know. My apologies… we have been house hunting (finally closed on a home that needs a little make over, I.e. paint and new carpet) for the past couple of weeks we have been painting the upstairs. Trying to get this done before the 29th (that is when carpet is getting installed). These past few days of painting has been difficult. Last night I could barely walk when I was finally able to relax. However, after a full night rest I am feeling so much better walking is a little difficult my legs are wobbly.

Here is where I will explain why for all that information. There has been days I am on a cane, and I wished I had a walker. Or there are days I just can’t function below my waist. After yesterday I have finally “caved” and ordered myself a wheelchair to use on days like that. I have been putting something like this off… Mobility aids are great, but for me I see them as a barrier. I don’t like who I am right now for having this illness. I miss being able to hike, kayak, go to the beach… OR JUST BE OUTSIDE IN THE SUN FOR FUCK SAKES… but here we are…

[chronicsister]

Diagnoses thus far…

I am turning 32 this year, and I can say I am happy my diagnosis lot fairly small. But to get to these have been a battle. Constant MRIs, CTs, ultra sounds, colonoscopies, endoscopies, tilt table, blood work, surgeries….

Positive diagnoses

Neurofibromatosis Type 1

IBS

Dysautonomia

While these are on my record my surgeries are related to my thyroid, I had massive nodules on my thyroid, but didn’t turn up Hashimoto’s or thyroid cancer, which led to the removal of part of it just to be “safe.” Now my body can’t regulate my hormones so I am on medication for that for the rest of my life. Along with heart medication… being chronically ill is not fun, it is something no one wants to have… trying to find a balance between life with family and friends and hospital visits is hard. 

[chronicsister]

Back to “normal”

So today I finished the medical test and was able to take my medication again! FINALLY! I feel so much better than I have for the past 3 days. My heart rate is stabilizing and I have a little energy to do things. Even though my scores from visible were low I wanted to do so much! So we went to the animal shelter and donated things there, PetSmart to pick up things for our fur babies, target to pick up air fresheners, and Marshalls to grab some organizing things for the kitchen. I am pleased to say our pantry is more organized and we have more room to freaking see things. I know tomorrow is going to be a little rough but hey I don’t feel like I am dying… (pictures below of my heart rate yesterday and today (didn’t take my meds until like 1030))

[chronicsister]

The worst day…

Today is the day I start my test that is 24hrs and my heart cannot handle it. I’ll be laying down then stand to do what I need to and it shoots up for 140-155 bpm… I’m going to crash tomorrow…

[chronicsister]

Day 2 without medications

Day one was miserable, I guess the feeling without having medication threw my body through a loop. However, today I felt a little better but my heart was racing no matter what I did and couldn’t catch my breath. The next 2 days will be just as bad if not worse….

[chronicsister]

Another day… Another test…

I see endocrinology to figure out if I have other problems, that are not associated with my autonomic system. Well with all my medications I am on I have triggered a potential false positive for possible tumors on my adrenal gland(s)…. So, the endocrinologist has me doing a 24 hour urine collection…… (yaaaaayyyy….) but before I start the collection I have to be off my medications 2-3 days. Which today makes Day 1, and I’m not feeling great and I don’t want to do anything but lay around the house and not get my heart rate up..

[chronicsister]

Trigger Warning—Medications— weight issues

After starting my care plan, which included two new meds, which one major side effect is weight gain… I have put on so much weight, to where my PCM is concerned for my health. The cardiologist doesn’t want to switch me off the one med that my PCM wants me off.

Now here is where I will get flack, negative thoughts about me. But I need help with this weight gain. My PCM is placing me on GLP, which will help with over eating (which I don’t think I have an issue), and weight loss. Along with working out and trying to get back into that. Before all this I used to be a body builder, with 3% body fat… I can’t stand to see me in the mirror.

[chronicsister]

What is Spoon Theory?

Described by: Christine Miserandino and Brought to you by: Visible

This is something that those with chronic illness live by. The best way to describe our energy levels and how much energy an action takes. The main reason why we go by Spoonies.

[chronicsister]

Visible IFYKYK

Ever since dealing with my diagnosis and my flare up that lasted for a year straight. I found support groups on Facebook, which lead me to downloading Tachymon for my phone and Apple Watch to monitor my heart rate which was an amazing. Having this data to show my PCM and my cardiologist was super helpful to get tested and medicated. However, I have been using visible every day for about 3-4 months now. It has helped me learn how much energy I am “wasting” on things that to me weren’t important, and how I can pace myself throughout the day. It gives me the Heart Rate Variability (HRV) in the morning to see how balanced my body is, so I know if I need to take it easy or have a somewhat normal day! I think my husband has started to see a little bit of a change as well.

There are still days I need to use my cane, or days I wish I had a walker. But overall it has been great. With Visible I have even started to work out again, through walking and resistant band work.

*if you would like to know more about visible let me know and I can help!*

[chronicsister]

While in Ohio at my parent’s place, our puppy (service dog in training) got to see her first snow. And can I say she absolutely love it! She wanted to be out there every moment of the day and night. However we didn’t allow that, but being out there in the cold made me feel great. Now that we are back home and it is warmer weather I am officially feeling like crap again.

Yes, service dogs can take breaks and play.

[chronicsister]

01/06: what a flare up

I posted a meme yesterday about overdoing it and causing a flare up. Which in honestly was all true. We are at my parents, which got about 12” of snow. I had to stand outside in my night shirt and slippers to try and cool down, so I didn’t pass out. After cooling off went straight to bed.

01/07: next day (today)

Today woke up feeling normal, compared to yesterday. Further updates later

[chronicsister]

[chronicsister]

How my life has been after diagnosis. Getting our pup trained as a service animal, heart monitors, medications… the worst of it all I have no energy to eat… half my meals are protein shakes. Along with a messy house I have no energy to keep up. Trying not to let this kick my ass, but some days I just want to disappear.

Today, my body balance is a 1 out of 5, I have spent it in bed… I’m hoping to be feeling better before I see my family.