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He Heard Me

Today has been an extremely painful and exhausting day. I started my morning off in Dallas with a lumbar puncture(LP) attempt x 3 in my neurologist’s office. When the Physician Assistant(PA) couldn’t get any fluid after the 3rd try (because I kept having excruciating nerve pain), she told me I would have to comeback another day. She explained I needed to have the LP done under guided radiology because it felt like I had a lot of scar tissue where she needed to go. Hearing that instantly put me in tears, my voice quivered as I asked her to please try again and promised to do better. The other PA (yes, double PA day) came up from her desk and rubbed my arm trying to comfort me. She assured me that I did everything I could and they’d see if radiology could work me in, so I wouldn’t have to wait any longer for answers.

Luckily, within 30 minutes I was headed across the street to main admissions to check-in for a lumbar puncture under radiology guidance. After the procedure, which had much fewer pain occurrences, the doctor explained a narrow spinal canal was the culprit for all the pain I felt in the doctor’s office.

While thankful I was finally able to get the LP completed, the downside was being required to lay down for 1 hour before I was allowed to leave. That hiccup had us leaving Dallas almost too late to make it back to Hurst for my pain management doctor’s appointment. Luckily though, traffic was on our side and my mom pulled into their parking lot with no time to spare.

I hadn’t seen this doctor in over a year because my CRPS had been under control until late May. So I get done telling him about my break through pain in my right hand but I was actually referred to him for full body pain that started in my mid-back about a month ago. My whole saga poured out, including being diagnosed twice with back spasms and being referred to specialist after specialist with no help. When I finally I finished talking, he immediately said, “sounds like a central nervous system issue.”

I immediately felt vindicated hearing his words, I uttered out excitedly, “that’s what I’ve been trying to tell people! So something like MS wouldn’t be crazy?!” He chuckled quietly and replied, “No, that’s exactly what I was thinking as the most likely [diagnosis].”

A doctor acknowledging I have some sort of CNS issue instantly gave me relief. The last 20 months have been hell but I no longer feel like I’m fighting for answers alone. The same day I get the spinal tap I’ve been requesting for over a year, a doctor says, “I completely understand what you’re telling me” and I know he means it.

I’m convinced if my CNS issue can ever be accurately diagnosed and treated, I’ll have a normal life again. Can you imagine all the things I’ll be getting in to when I’m able to walk and stand for 6 hours again!? I mean, seriously, think about how often you walk or stand for 6 hours? I used to do it during work and when I went out dancing. Oh and let’s not forget amusement parks, shopping days and sightseeing on vacations! It’s been sooooooooo long since I’ve gotten to do all day activities, I miss it so much.

Even though today was painful and exhausting, it was also extremely validating. In the the last 20 months I’ve experienced the worst pain, fatigue and depression of my entire life. I’ve cried more tears, sat in more waiting room chairs and lost more of myself than ever before. Today my pain management doctor took the time to actually hear me and offered to help however he could. He gave me back some hope today, hope I’ve desperately needed. I finally have a CT of my entire spine scheduled for tomorrow, TOMORROW, thanks to this doctor. I am so thankful this is all finally happening, I feel like I’ve had to wait long enough.

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Home.

I couldn’t stay.

Everything was unloaded at my parents house and I had Hamilton in tow. Dillon was getting ready to leave but I just couldn’t let him go. Being back in my childhood room didn’t bring me comfort but actual anxiety. I’m not sure when that stopped being my home but somewhere during the last 3 years it happened.

Dillon is my family now, and that old saying is true. Home is where the heart is. I’m so thankful for my future husband and friend.

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Weekdays Away

Everything is hard right now, even writing this is taking all of my concentration and energy, which is why I need help. After laying in my own vomit twice this week because I was to weak to get up, I don’t feel safe being left alone for extended periods of time. So I’ll be indefinitely staying with my parents during the week and coming home on the weekends to Dillon. Dillon is my best friend and I’m really sad we will be apart for 5 days at a time now. Love endures all, the ups and the downs, but I’m still frustrated by the downs.

I know a better solution will present itself but for now, this is what’s best for all of us.

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Kindness Matters

I was breathing heavy, weakly fanning myself with my visit summery papers as I laid up against the elevator wall. Holding my head with the other hand, sweat ran down my back as my knees wobbled, I winced in pain between labored breaths. An older gentleman who had joined us in the elevator as we were leaving the doctor’s office was starring at me; I wasn’t interested in meeting his gaze. Strangers have only ever made me feel uncomfortable when I’m not “myself” so I kept my eyes down until I heard a ding. Ready to make my escape, I looked up only to realize we had stopped a floor short of the exit for someone to get on. I let out a frustrated sigh.

Everything in the elevator moved slow, including the doors and the speed in which it moved down. I was hanging by threads when this gentleman says, “Are you okay, do you need something?” in the most sincere and concerned voice, even though my fiancé, Dillon, stood next to me.

It took me forever to finally meet the man’s gaze, though barely, I pushed out a labored, “I’m fine,” as the elevator doors opened. I tried to smile at him as I slowly exited the elevator but it felt faint. Dillon went ahead of me to go get the truck as I stopped to sit in the closest chair I saw. With my eyes closed I fell into the chair, I was so overwhelmed with fatigue, pain and nausea.

Then I heard this gentleman’s voice again. He was asking again if I was okay, and I opened my eyes to him just staring at me, concerned. I reassured him I was okay, but he wasn’t satisfied and continued to press me. He began to ask if I had the flu or something, which is when I reluctantly shared that I had heart failure and it just made me like this sometimes. I was nauseous, more than before because I was just waiting for the awkward conversation that I was sure to follow. The one where he would stare at me blankly, confused as to what to say. Then quickly he’d blurt out something he thinks is polite but would just make me uncomfortable like: “but you’re too young for that.”

However, this time was different.

In response to my heart failure comment, he chuckled and said, “oh yeah, that’ll do it! Are you sure I can’t get you some water or something?”

I was immediately elated, for the first time a stranger didn’t make me feel uncomfortable in the middle of a really horrible time. I reassured him my fiancé was getting the car and that I was just waiting, which is when he then offered to wait with me. Of course I politely declined his offer and he finally went on his way. It was only a brief encounter but it was a nice moment in an otherwise unpleasant experience. Always remember, kindness matters, it helps in ways modern medicine and treatment plans can’t.

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Back Pain Remains

Relationships are hard, everyone has their own issues to overcome. My issues with people just happen to almost always correlate with my chronic illness issues.

Sure, my feelings are hurt from time to time. I often let people know when they hurt my feelings either with a statement or a death glare followed by silence.

I do not tolerate people who upset me. So once it occurs, I evaluate if they’re worth the energy of my words. If they aren’t, I probably never speak to them again. If they are, I try to explain why their comment hurt my feelings.

This is how I have learned to manage my severely limited energy. I am always tired, I can never get enough sleep. Every single action I take has been thought through. I also know if I’m having fun, I’m probably going to pay for it later.

A great example of this is how I had an AMAZING vacation and I’ve been in bed almost non stop since getting home. My back hurts so freaking bad and after seeing 3 different doctors, I still haven’t had any imaging done. It’s so painful and exhausting, not mention this is the worst fatigue I’ve ever had.

I know there will be better days, at some point, but being positive until they come is really hard for me. I’m just so tired of being sick and tired, you know?

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Live in Care Assistant Needed

I tried to post this ad on craigslist, but it got deleted. So I’m just self promoting now 🤷🏼‍♀️

 

NEEDED: Live in Care Assistant needed for lively 26 year old female with multiple debilitating illnesses. 

Perks:

*Furnished private room provided with WiFi. 

*Semi private bathroom 

*Full use of house except master suite 

*Ideal for College Student (1.5 Miles from TCC NE Campus)

*$100 cash compensation every Friday. 

*Could still work a full time job elsewhere if desired or attended College 

*Weekends Off

*Major Holidays Off

*Paid Time Off 

*Exposure to a variety of life experiences 

Typical hours will be 3/4 days a week, Monday – Friday between 12p-5p but can vary.

*Must be flexible*

**Weekends and Major Holidays always off**

Caregiver responsibilities may include:

•Providing companionship and conversation

•Assisting with bathing, dressing, grooming and toileting

•Planning and preparing meals

•Housekeeping and laundry 

•Medication reminders

•Transportation to doctor appointments and running errands (vehicle provided)

Assistant responsibilities may include:

•Answering phone calls and replying to emails

•Scheduling appointments and ensuring they are kept 

•Navigate basic computer operations and Microsoft Word

•Prepare meeting materials as directed 

•Transportation as needed (vehicle provided) 

•Take meeting notes and transcribe them in a word document 

Requirements:

•1+ year of work experience, part time is acceptable 

•Valid driver’s license and car insurance (vehicle is provided when divining is needed) 

       • High School Diploma 

       • Able to type 35 WPM

       • Highly Motivated Individual 

       • Speaks English fluently 

        • Able to pass background check 

How to Apply:

Email Resume to MaudieKay@outlook.com

If selected for an interview you will be contacted via email. 

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December Weight Achieved

HW:232 lbs

CW: 212 lbs

GW: 150 lbs

GD: 3/23/2019

I’m finally back down to the weight I was at in December!! FINALLY!

After an exhausting week of vacation, forgetting meds some of the days and having to eat junk on the road, I’m so glad my weight went down.

Chronic illness definitely made this past week so much harder but I’m thankful for the happy memories I got to make.

I’m too exhausted to say anything else, I’m hoping I’m back to my normal state by Wednesday. Let’s keep our fingers crossed!

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