My Open Letter To Lupus

Dear Lupus,

Back in 2012 I was happy and just going about my life and was actually very excited about where my life was taking me….

But you couldn’t leave it that way. You just had to make yourself known. You came into my life like a hurricane. You set me down a path that I had no say in and was not really ready to face. No one asked you to leave that dormant state you had been living. And you certainly weren’t given an invitation to become the center of my life. However, you did just that and in the process changed just about everything I knew and was comfortable with. You came in and made it known by all that you were GOING TO BE THE CENTER OF ATTENTION. Who asked you to come? Who asked you to come into my body and take my life away?? I sure as hell didn’t.

📷 Hannah Busing/ instagram.com/hannahbusing

Looking back, I can see that you made yourself known and reared your ugly head the first time when I was in highschool. Although no one called you by your proper name. Instead they kept telling me that I had a bad case of mono. Mono that lasted SIX MONTHS?!?! Really?!?? Being a teenager I always wondered why the simplest tasks made me exhausted and how the people around me could go-go-go for hours, when I couldn’t. It was because of you LUPUS.

You went away for several years for the most part and I was grateful. Even so, I continued to wonder through the rest of high school and college why I couldn’t be as active and involved like the kids my age etc. it was bc of you. Damn you for taking away my years when I should have been having fun!

📷 Erwan Hesry/erwanhesry.com

Finally six years ago you officially made your move. You moved in for good, and brought all your baggage. Although we never discussed this, and I never agreed to this. I didn’t give you a key or clear out a drawer for you. Instead you just made yourself welcome. Since that day that seems so long ago you’ve made my life or a good part of it a living hell. Because of you I have lost friends because they think I don’t want to see them or that I’m just full of excuses as to why I don’t want to go out to the bar after work. Or because they simply don’t understand when I say I’m tired it’s not just lay down and take a nap tired it’s pure exhaustion. Because of you I had to walk away from my nursing career after only 11 years. I planned on working in the medical community until I retired. But you once again had another plan. And your plan won, even though I didn’t agree. But the biggest problem I have with you isn’t related to losing my career, or friends. My biggest issue is how hard you’ve made it for me to be able to watch my sister play ball. She is one of my very favorite humans in life. And watching her pitch is one of my all time favorite things to do. But because of you I was virtually unable to do the last couple of years. Mainly due to the intense heat intolerance I developed due to Lupus. And the other issues that the heat causes for me, like headaches. And it literally has broken my heart. This summer was the last ball season of her career and I only got to see her once. I know she understands but it still hurt me so much.

You came and brought along uncontrolled pain (at times), long term steroids (leading to weight gain), inability to be in the heat or sun, sleep issues, and a plethora of other very undesirable conditions that go hand in hand with you. I can never thank you enough for your generosity. You brought all your friends (other medical conditions) along with you when you moved in. I didn’t want you and I definitely didn’t want any of them!!!

I have decided I am done, you have been “kind” enough. But now it’s is time to go away and take all the “gifts” you’ve brought with you that are also not welcomed here.

📷 Joshua Coleman/ joshstyle.com

One of the reasons I hate you the most is because between you and your “friend” endometriosis I will no longer be able to carry my own baby. And I’ve never wanted anything more than to be a mother. But because of you, the side effects of the drugs I take to treat you and your friend endometriosis, carrying my own baby is no longer possible. My lifelong goal gone in a second. I have always wanted to adopt so I know that’s still an option. But it’s still not quite the same as having your own baby. But I will be greatly appreciative of any child that God gives me.

When you leave you can also take the Adrenal Insufficiency and Hemiplegic migraines with you. Because of the three of you I had to quit my job and move home with my parents. Because you were all being so mean. At times of big flares, illness or hospital admission my blood pressure can drop and stay in the 70’s and 80’s. Also because of you I have spent more time in the ER/Hospital in the last FEW YEARS than one person ever should IN A LIFETIME.

I’m tired of all of you. Tired of all the medications, the depression, the anxiety and most of all the pain.  I never asked any one of you into my life, yet you are all here. You have changed my life in more ways than I can count. I’ve lost the majority of my local friends, I can no longer work on gaining a degree to teach nursing school because of you. You have even made it very very hard for me to hold down a job. You need to pack up and get the hell out of my life! GO. GO I tell ya!!

One thing that keeps me going is mysister’s unwavering faith in God. And her prayers. Because of her I have been able to find my relationship with the Heavenly Father again. Because of that I now live by the verses.

Philippines 4:13 I can do ALL things through Christ who strengthens me.

Isaiah 41:10 So do not fear I am with you; do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.

With Love,

-Amber

Giving Up or Giving In

Giving up? Or Giving in? Have you every really thought about the difference or how either one could impact your life? I think it’s safe to say that most haven’t put much time into the meaning or impact of those two similar statements. And if they have it’s probably because they are staring adversity in the face. For anyone who has ever gotten a piece of news that was life altering, whether it be about a job, their health, or their family, giving up has probably at least crossed their mind. The same goes for anyone living with a chronic illness. The diagnosis in and of itself can lead to feelings of wanting to throw in the towel. Not to mention living with that condition for the rest of your life. Eventually we will all come to a point in life where we have to decide if we are going to give in and make changes and learn to live our life to the fullest or give up and throw in the towel!

So whats the difference between giving up and giving in? For many giving up causes them to feel as though they have failed. Like they weren’t strong enough to be able to handle the situation at hand. While giving in is more like surrendering. It is more like you are accepting that you can’t change certain things and are open to finding a way to deal with the situation that is positive and can be done within your limitations.

Lets take a moment and look at some examples of the difference.

Giving Up: “The pain is just to much! I can’t handle it. I am done trying to do anything but stay in bed.”

I know we have all felt like this from time to time and that is okay. That being said if we want to continue doing the things we like to do we have to change our mindset and put a different spin on how we look at our pain. Because for many chronic pain is going to become the new norm of sorts, so staying in bed for the rest of your life isn’t a valid option.

Giving In: “I know I cannot control my pain level as much as I would like to. I am sad and frustrated but I will show myself some grace. I will rest when the pain is bad, and do all the things in my power to deal with the pain. I know the pain may slow me down, but it doesn’t have to completely change my life.”

There are going to be days  when the pain is at it’s worst and you are going to want to give up. And that’s okay. A day here and there where we feel defeated is natural. But to live the life we want to live we have to change our mindset and not allow the pain to change the things we enjoy or who we are at our core.

Yuris Alhumaydy, instagram.com/y.rss

Giving Up: “I can no longer do the job I loved so much, therefore I am useless”

This is a BIG struggle for many with chronic illness. When our lives are impacted in a way that we are no longer to do the job we loved it is easy to feel useless. Although it is likely that you are your own worst critic and no one else is viewing you as useless.

Giving In: “I wish I could continue to do the job that I loved so much, but that is just not possible at this point. But maybe I can find a job that I enjoy doing, that is less physical and will not cause my disease to flare.”

Losing the job you enjoyed so much is hard and chances are high that you will question your self-worth. That’s okay for a short time and then you need to realize that you didn’t give up your job you gave in. Take some time to mourn the changes that occurred and then start looking for something you can do that is better for your health. It is likely that when you find something that is better for your health it will also be better for your psyche.

Thought Catalog, thoughtcatalog.com

Giving Up: “The girls are going out to dinner and dancing. I won’t be able to keep up with them dancing so I just won’t bother going at all.”

It is hard when you can’t keep up with your friends and do the things you used to love to do. We have all been this person though, we feel like since we can’t enjoy all the activities shouldn’t go at all. It is easier to say you can’t go rather than leaving in the middle of the evening when everyone is having so much fun.

Giving In: “I know I will never make it long enough to go to dinner and then dancing with the girls, so I will just go to dinner.”

Even though it often feels like we shouldn’t bother going for just part of an evening out it really is a good way to give in.  You don’t have to give up on the whole night out with the girls, you just do what is best for you. It is good for you to get out of the house and spend some time with your friends.

Ben Duchac

Don’t get me wrong, there are going to be hours, days or even weeks where you just want to give up.  You’ve had a bad day, your condition is flaring, you are in pain and crawling into bed and hiding from the world seems like the best option.  And while it is a natural reaction and okay to do for awhile. It is not good for you or your health to live in that negative space.  There are things that we will give up on, like friendships or relationships with people who didn’t care enough to stay around once you got sick.  But, that is something that we didn’t chose to give up, they did. We can never change someone else’s thoughts or feelings, and if you try chances are you will fail. In situations like that it is better to give up and move on rather than putting time and energy into a failing relationship. In the long run you have to focus on YOU and what is in your best interest. Doing things that make you happy and won’t cause your disease to flare. If that means missing a night out here and there, or quitting a job that is too hard for you to continue doing then that is what has to be done.  In the end we all need to find a way to show ourselves some grace and give in not give up.

With Love,

Amber

7 Things I Learned From My Chronic Illness That I Never Knew As A Nurse

I can’t even begin to count the number of times I have been asked what I have learned from my illness. I also get asked what if anything I have learned about the Healthcare System from being a chronic patient that I didn’t learn in all the years I worked as an RN or the years I was in school for my nursing degree. The first few years not much came to mind. But the longer I have had to deal with a chronic illness, the more doctors I have seen, the more insurance companies I have to fight, I have definitely learned some things that my education or work experience NEVER taught me. You may be thinking, how is that even possible, you went through more than 4 years of Nursing Education and worked in the healthcare field for over ten years, how would being chronically ill teach you anything that you didn’t already know? Well that is easy. During nursing school or during all those years I worked in healthcare I wasn’t the patient. I was the caregiver. I didn’t really see what the patients had to deal with just to get the treatments they needed, and I didn’t see the judgment that patients feel from the healthcare staff. I will just be completely honest, you have no idea as a healthcare provider what it is like to be on the other side of that bed until you have been on that side yourself!! So lets just jump right in!

Rawpixel.com

1. The real meaning of a Chronic Illness – One of the BIGGEST things I have learned from my illness seems silly but I want to be honest. I have learned the true meaning of a CHRONIC ILLNESS. When I took care of patients in the hospital who had a chronic illness it NEVER really hit me just what that meant. I never realized exactly what chronic meant and just how much of their lives are impacted by their chronic disease.

2. Sympathy and Empathy – These are entirely different entities. It is very different sympathizing and trying to understand where someone is coming from. Now that I can empathize as both a patient and as a nurse it has changed my outlook as well as how I interacted with patients and their families. I learned how and why chronic illness patients seem more guarded and at times more fearful than your average patient.

Annie Spratt, mammasaurus.co.uk.store

3. Use of medical jargon – While I was working as a nurse I never realized just how often medical professionals use medical jargon. Most likely because i was using it to. Luckily I understand most of it as a patient. But when I am having one of my bad migraines it is often hard for me to really understand much of anything. It was those days that made me so much aware of just how often medical terminology is used to explain things to patients and families rather than lay terms.

4. Dealing with judgement – Sadly, through the last six years I’ve had to learn how to deal with judgmental medical staff more than I ever expected. Before I got sick I never realized how quick medical professionals are to judge (myself in the past included). Since being sick with an invisible illness I now know how it feels when people assume things about you based solely on your appearance and not your medical history. Or how it feels when people assume you are drug seeking based on your medical diagnosis before they even come and talk with you. This made a huge impact on me and how I practiced nursing.

5. Being Aware of The Cost of Procedures, Treatments, Treatment Centers & Medications – I’ll be 100% honest and say that when I was working ICU Step Down I was not aware of the cost of probably 95% of the medications and treatment modalities we used for our patients. It wasn’t because I didn’t care, it was simply because I had to know so many other things that this information would take a back seat. On the other side as a patient I am much more aware of what medications cost and how much MRI’s or CT Scans will cost and what my out of pocket will be. Simply because I have to pay for it. I feel like there is a break down between providers and patients on this topic. The providers want the best treatment no matter the cost. But the patient would usually prefer the best treatment for the cost. Learning this as a patient definitely changed things I did in my practice. Because I knew what it was like to hear your new medication was going to cost $25,000.

Fabian Blank

6. Honoring Time – What I mean by this is that when you’ve asked for something for pain and the nurse says “I’ll be right back,” or “I’ll be in at 5pm” with pain meds. But they don’t come back for 30 minutes or until 5:15 those minutes feel like hours. As a nurse I always tried to get right back or to go when I said I would. But I never truly understood just how long those 10 or 15 minutes I was gone really felt. When you are hurting or feeling sick to your stomach those 15 minutes may feel like 4 hours!

7. Trust the patient/listen to patient regarding what works for them. I think as a medical professional it’s easy to work based on knowledge or experience. But it’s really important to listen to the patient in regards to what works. I’ve learned this because of my migraines. I’ve dealt with them so long that I know what is going to help and what is a waste of time. And I really appreciate the doctors and nurses who listen to me and don’t just throw meds at me because of what they “always give” for migraines.

Needless to say, I have learned so much from being a patient with a chronic illness. I feel like that in some strange way it actually made me a better medical provider. As you can imagine after working in the medical field for many years I have many friends who remain in that field. And due to the things I have experienced with my chronic illness they have been able to learn and improve on the way they practice and treat those they care for who are in similar situations. I will always stand by my feelings that every medical provider should have to be a patient for at least a short period so they can experience things from the other side of the bed. So they can have the full patient experience. Their views on the way they treat patients would be forever changed like mine. That being said, a chronic illness is not something to joke about; however, it has given me a view into a world that I felt I was fully enveloped in, which I had never fully seen before. And for that I will always be grateful.

With Love,

Amber