Professional Patient||Corporate Professional

Chronically Fabulous

I’ve been dealing with health issues almost my entire life. My symptoms started popping up as a child and subsequently got worse as I got older. Managing severe back and joint pain just became a part of my daily routine. Throughout bouts of ill health, I was able to complete three college degrees. I then accepted a job at a corporate office, where I have been working for 3 years now. Working a full-time job while also managing chronic illnesses full-time can be a lot to have on one’s plate. While in the office, it isn’t uncommon for me to find myself throwing up several times a day in the company’s private bathroom. It also isn’t uncommon for me to be found in the wellness center using their blood pressure monitor when I feel like I’m about to faint. I have an emergency plan in place at work and wear a medical ID bracelet every day just in case something happens while I’m alone. There are some moments where I am so overwhelmed by the number of doctor’s appointments to keep up with it feels like I need to hire a personal secretary. This isn’t where I saw myself being at age 28, but I am here and my journey is worth the fight. 

With all this going on, how do I manage working full-time? Well, to be quite honest it’s a balancing act. I live at home with my parents right now, which makes things a lot easier and alleviates after-work tasks, like buying groceries and cooking dinner. If I were to work full-time and have my own home or even an apartment, I don’t think I’d be able to balance it. Between my health and my job, I have very little energy for anything else. It’s a choice I had to make. While I would love to live on my own, it simply wouldn’t be feasible. My parents often have to help with simple tasks like ironing, putting a fitted sheet on my bed, and even sometimes blow drying my hair, as doing them on my own could lead to fainting. I also haven’t been in the dating world for several years. It’s another sacrifice I had to make. Between work and trying to maintain friendships, I simply don’t have the energy for a relationship. At this point, it doesn’t bother me that I don’t have a significant other. I’m content enough in life with my close friendships, family, and work.  

I am extremely grateful for not only have caring parents, but also a sympathetic employer. Prior to working, I didn’t have much of an opinion as to whether or not I should disclose my health situation to my employer. For me, personally, full disclosure has been the best route. I am 100% open about my health situation and have even sent articles to my bosses so they can understand what it is I’m dealing with. I do have FMLA (Family and Medical Leave Act) protection with my job, so I’m able to take time off as needed for flare-ups or doctor’s appointments, which at the moment are very frequent. Another accommodation my employer provides is time throughout the day to manage my symptoms as they flare. For example, if I need to lay down for a few minutes or take a walk so my hip doesn’t get too stiff, I’m allowed to do so. Having this time throughout the day helps me successfully get through the work week and makes having a job attainable for me. 

Although working a full-time job can be extremely difficult at times, especially given my health issues, overall I’m glad to be working. It helps give me a sense of normalcy, as it allows me to follow a routine and socialize with all of my co-workers. Working while chronically ill is an art form in and of itself. It’s a balancing act that requires one to look within and takes coming to terms with one’s limitations. I’m still learning so much about my limitations and how to listen to my body. It’s imperative for me to do so.

Whether it means taking a walk to get some air during your lunch break or skipping out on after-work activities to go home and rest, listen to your body and do what feels right. Honoring your limitations and not over-extending yourself are key to creating a healthy work-life balance. And while I know that not all companies will be as flexible or accommodating, don’t be afraid to reach out to your employer and see what resources are available to help you achieve your goals.

When your brain says “yes”, but your body says “no”

Chronically Fabulous

I was supposed to go to Greece in May. Keyword: WAS. My family was going to take a trip together, all 12 of us. That was the plan, until my dad had another episode with his heart that required surgery and my health definitely won’t allow me to do that type of travel.

So badly I wanted to go. So badly I wanted to see more of the place that is the basis of my heritage. BUT, my body has other plans. It’s tough, it really is, when your brain says “yes” and your body says “no”. BUT, God has a plan.

Do I understand the reasoning for God’s plan? No, I don’t, but I know that I can put my anxieties toward my health in His hands.

Sometimes I find it difficult to listen to my body. I try to push myself too hard, too hard to a point of where it does me more harm than if I had paced myself. I don’t necessarily believe in New Year’s resolutions, but my resolution for 2020 is to be more aware of the times my body says “no” and my brain says “yes”. I’m going to be siding more with my body.

These last few weeks my stomach has been worse. Eating solids has been difficult. Because of this there were times my body has needed a break, so I honored my body’s wishes and rested. By listening to my body and resting, I’m being more aware. When I struggle with times of being more aware, I remember God’s plan and that God’s plan is all I need.

You ARE Beautiful

Chronically Fabulous

Beauty. What is it? Internal? External? Both?

As someone with illnesses that are primarily invisible, my illness became a little more visible once I had a port placed. I had some self-doubt in regards to my appearance. My port is accessed M-F and it is somewhat high up on my chest, so it’s visible in 95% of what I wear. I also have to leave my tubing out because of what I refer to as “the boob danger zone”, i.e, that place between your girls, and because I want to make sure no sweat gets in my line (hello, infection) I keep my line out of my shirt. There aren’t many people out there walking around with an IV 24/7, so most people stare at it and I really don’t take offense. They’re just curious.

What took me by surprise was when I went to the mall and got hit on by a guy. An actual guy who was honestly pretty attractive. Port line and all, he found me attractive. Subconsciously, I must have believed my port negatively effected what I considered beautiful because my first reaction was “whoa, some people think I’m pretty even with this IV hanging out of my shirt”.

The reason I’m writing this is because YOU are beautiful. If you have a port, need a mobility aid, have braces, whatever it may be, YOU are beautiful. These devices help YOU live your life to the fullest.

If you ever have any self-doubt, look in the mirror. Look in the mirror and see the fierce warrior you are. So what is beauty? I’d say beauty is our strength, our vulnerability, and our passion to live our lives to the fullest.

Brain Fog

Chronically Fabulous

Brain fog is really one of those things that you can’t really understand unless you’ve experienced it. Brain fog accompanies dozens of diagnoses, but for me, brain fog is caused by my POTS. Brain fog also presents itself in various forms.

For me, brain fog tends to hit hard. When I’m experiencing brain fog I will easily forget what I’m saying mid-sentence, be unable to recall words, and struggle with short-term memory loss. Brain fog hit me so badly over the summer that I took three weeks off of work and then only worked half days for a month. It’s definitely not a joke and definitely misunderstood by people who haven’t experienced it.

Something that I used to experience more often with my brain fog, but that has gradually gotten better, is how harshly I judge myself when I experience brain fog. I used to try and tell myself that I’m probably just tired or that I need to try harder. But when I noticed it happening no matter how much sleep I got or how hard I tried is when I realized that brain fog isn’t really something that I can control. Now that I know this, I try to be easier on myself.

My co-workers and superiors are also gaining a better understanding of my brain fog when I stop mid-sentence and forget what we’re talking about. They’re more than willing to remind me or help me think of the word I’m having difficulty recalling.

I suggest, if you’re a sufferer of brain fog, that you be honest with yourself and with those around you. If you’re having a flare-up, which results in brain fog, speak up. Speaking up has helped people around me understand that I’m actually not flakey, that my medical condition causes me issues with my memory and recall. Additionally, don’t be hard on yourself. Learn to be patient with yourself.

By Grace, Through Faith

Chronically Fabulous

It’s been quite a while since I’ve blogged and it’s most likely because I went through a period of time where I really needed to digest my current situation, pun intended.

My POTS (Postural Orthostatic Tachycardia Syndrome) throws me for a loop constantly, but it’s becoming better managed thanks to multiple medication changes and the introduction of saline infusions (thanks to me not being able to consume enough fluids due to Gastroparesis). My gastroparesis is, and always will, cause me a plethora of issues, one of those being unable to staying hydrated due to vomiting dozens of times a week, hence the saline infusions. I also deal with severe bloating daily, which causes pretty rough abdominal pain.

I sometimes feel like I live in this place of uncertainty, where I fear if a flare-up is my new baseline. While this place of uncertainty is definitely valid, I’m trying to teach myself to place everything, and I mean everything, into the hands of Christ. Now this is definitely easier said than done. I struggle with fear frequently and sometimes it can be consuming. Being chronically ill is terrifying and there’s no handbook that helps you understand going from healthy person to sick person 24/7. My health doesn’t take vacations and is a constant thing I must be aware of. By teaching myself to place my fear and uncertainty in the hands of Christ, I’m hoping I can live a life where I feel more free and at peace with my situation.

Making It Work

Chronically Fabulous

Chronic illness is unpredictable, which can often time lead to frustration. Making it work is one of the things that has helped me adjust to living with chronic illness.

No one can doubt that living with a chronic illness is a full-time job. Having a full-time job on top of chronic illness is pretty much two-full time jobs, except you don’t get weekends off or vacation days. Understanding how to cope with this can be hard and will be hard. For me, I spend a lot of my time when I’m not at work resting. I am learning to listen more to my body and try to understand my symptoms. For example, let’s say it’s a day when my heart rate is not wanting to come down. I do have days where my resting heart rate hovers around 115 bpm, with my standing being much higher. It’s not easy and it takes a toll on my body. On these days I will first attempt upping my fluid intake. If that doesn’t help, I will monitor my blood pressure to see if that’s an issue and will up my salt intake. If neither of that helps, I know it’s time to take the day to rest. Remaining supine during these times is the only thing I can do. I have to accept that.

I think that along with making it work comes acceptance. Acceptance is totally not easy. Accepting where your body is at now versus where it used to be can be hard. I know it’s incredibly hard for me at times to look back at what I was able to do before, but even then my symptoms were often there, just not as severe. I can’t do too much physical activity, I can’t eat certain things, and I tend to get very tired very easily. I am the first one to leave a party, if I even make it to that party to begin with. Gone are the days where I could stand during the standing portions of a church service (half the time I can’t even make it to church). It’ll never be easy, but it’s something I must accept to live a happy life.

Learning to work with the illness instead of against is all we can do. It’s chronic, it’s not like it’s going to go away, so finding ways to make it work is essential to living a happy life with chronic illness. Working with friends, family, and my employer have really helped me feel as though I have more control over my illness, even though my symptoms are very unpredictable.

When You Feel Like a Failure Learn to Celebrate Little Victories

Chronically Fabulous

I’m at the point in life where many of my peers are getting their first house, getting married, getting engaged, and having kids. In regards to my personal experience, I’m at the point in my life where, at times, walking up my driveway without assistance of my mom seems like insurmountable task. I cannot imagine moving out at this time or anytime in the near future. Sometimes I tend to compare my experiences to the experiences of those around me and often time feel like a failure.

I am working on trying to not compare where I am at in life to others around me. It automatically sets me up for a bad time when I do that. Instead, I am now working toward celebrating little victories. For me, little victories include getting through a work day without almost passing out, trying to make it to social activities the best I can (but remembering that it’s ok to leave early if I’m not well), making it to church, trying to shower every day (even if it requires sitting…if not, dry shampoo is always an option), remembering to bring my midodrine with me when leaving the house, remembering to wear my compression socks, and simply getting out of bed. These things probably sound like the simplest of tasks to most, but for me, they usually require a lot of energy and can bring on some negative symptoms. Plus, if you know anything about dysautonomia, brain fog is a symptom that tends to stick around, so remembering the little things can be a big deal.

Even those most people in their mid-20s are experiencing things I may never get to experience, I know I have plenty of blessings. I am not a failure and I am not worthless. I just have different goals and different experiences. My experiences are just as valuable and so are anyone’s with a chronic illness.

The Rough Stuff

Chronically Fabulous

There are of course some positives of living life with chronic illness, such as appreciating the little things more and growing more in your faith (for me personally). However, there are many struggles, too. There are times when it’s a little more difficult to deal with what’s in front of you.

For example, my symptoms have been flaring more than usual. My usual baseline is a few hours of the day in the morning where I can function somewhat normally and then I begin to go downhill in the afternoon till I go to bed and this repeats each day. Totally normal for me and still trying to adjust. Lately, though, my mornings are starting to feel like my afternoons and my afternoons are a whole new level of difficult. I do deal with daily symptoms of feeling lightheaded, tachycardia, fluctuating blood pressure, etc. BUT, my days are now filled with more issues of pre-syncope, that terrible feeling of almost fainting, but not often losing consciousness. My symptoms are of course triggered by standing and movement, so upon standing it’s like my entire world changes perspective. Even sitting I will have some symptoms, but standing is a whole new world. Think about how it feels when you stand up too fast, but that feeling doesn’t go away and lingers till you’re sitting or lying down again. My mind becomes clouded, I feel pressure in my head, my extremities become heavy and turn purplish, and my tachycardia gets worse. Then the headache hits, which I refer to as the “dysautonomia hangover”. That’s autonomic dysfunction for ya and that’s my typical day, as of right now.

Now that I’ve described my typical day in some detail, here’s where the rough stuff comes into play. Clearly, as you can tell, things are pretty unpredictable. I can be fine sitting and then once I’m up things turn bad. This makes for an increasingly difficult time doing daily things such as work or social activities. It also makes me fearful of my future because of the recent worsening of my symptoms that can’t seem to be well controlled with the typical beta-blocker, midodrine, and compression garments. It makes me fearful of the unknown. Is this my new baseline or just a really bad flare that happens to be lasting for a few weeks? I simply do not know, but I do know one thing, and that’s to keep pushing on. I am relying more on those around me right now because I simply am scared for my future and for my health. It’s tough, but I am tougher.

The Journey Begins

Chronically Fabulous

Thanks for joining me on this journey!

I live with multiple chronic illnesses, which will be discussed throughout my blog.

Life with these conditions can be quite unpredictable and very hard at times. It can feel isolating and I’ve been trying to find ways to share my experiences with others. Since I like writing, I decided a blog would be my best venture!