An Open Letter to Lupus

Dear lupus,

You have changed my life. You turned my life, and my parents life upside down. You know, it was very hard to diagnose you. It took 2 years. That’s 24 months- 730 days- 17520 hours- 1051200 minutes- 63072000 seconds of my life spent trying to diagnose. For a while, I was in a really dark place. The darkness comes and goes, because of the trials you’ve put me through, and continue to put me through. I have been through tortuous trials to diagnose you- countless amounts of blood work, scans, hospital stays, steroids, and doctors appointments. I also had to make arduous decision to put school on hold, stop working, and quit running half marathons (which were my passion). You’ve put me through a lot, lupus. I blamed you. I blamed myself, wondering what I ever did to deserve this. You have caused so much hurt and pain in my life. There were doctors who didn’t understand what you were, so they turned me away. I have had friends and doctors who gave up on me. You tried to break me down, lupus. You took everything from me. But you know what? I am a warrior, and a survivor. I have certain friends and family who have only rallied against me. I have learned who is there for me, when I’ve needed them the most. I have a stronger bond than ever with my parents. I have discovered my passion and love for writing, which I wouldn’t have if it wasn’t for you, lupus. I am stronger, because of you. At times, I feel like you have only broken me, but you’re only making me stronger. So lupus, you may have changed my life, but if I had the chance to go back and redo my life or change experiences, I wouldn’t. You have made me into the person I am today. So, I may hate you, and hate the pain you bring me- I am also very thankful for the mindset you’ve given me, the strength I’ve developed, and the bonds I have formed with those around me. I know you will be something I will forever have to deal with, I also know there are positive attributes to having you in my life. Just know, you will never break me.

Sincerely,

This lupus warrior ♡

This post was first seen on lifewithanillness.com

You Have a Diagnosis, Now What?

You receive a diagnosis, which is a great thing. I know, sounds absurd that it could be considered a relieving thing to hear. For those with a chronic illness, you’ve been suffering for possibly months maybe even years. At this point you want the diagnosis. So you can work on your health to get into remission, however, receiving it can also make you feel overwhelmed. A thousand thoughts will go through your head all at once. You try to think about what the next step is for you. All you want is to get better, but sometimes you just don’t know what you need to do. Here is a list of what to do next after you get diagnosed.

  • Take a deep breath.

Now I know this seems a little obvious, however, after years of suffering, countless appointments, endless testing, and hospital stays the search is over. You can now put to rest all of the doubts people had that you were “faking” it. You now have a reason why your joints make you feel like you’re 70, when you’re actually 21. You can now put your mind at rest of feeling miserable, but the reason was unknown. You now have a name to blame the pain on. Take a deep breath, the detective work to figure out what you have is finally over.

  • Study, study, study.

I’ve learned when you are diagnosed, your mind can be all over the place. You have a lot to think about. The best thing you can do is study everything there is to know about what you’re going through. There is no such thing as knowing “too much” about your illness. The truth is, with most chronic illnesses there will be limitations, diet preferences, and learning to adjust to your new life with your diagnosis. When they give you a prescription, it is in your best interest to study your medication. Learn the side effects, the benefits, and what to watch for incase of a reaction.

  • Find support groups or a therapist.

I know some people aren’t keen on the idea of seeing a therapist. I wasn’t, but when you have gone through agony, pain 24/7, and your life changed in an instant, it is good to talk to someone. You’re under enormous amounts of stress, and the more you keep it in, the more it will build up. It truly is okay to ask for help. They really are there to listen to you, like a friend. I have learned techniques by going to therapy, and just by talking to someone, it honestly has helped me cope with being ill. I also recently joined a POTS support group recommended by my doctor, and it was the best decision I have made during my illness journey. It is always nice to talk to a friend or love ones, but you will always have the feeling that they don’t fully understand. Support groups are amazing in the fact that, there are people going through just about the same thing you are going through. Check online to see if there is a support group for your illness locally. They understand you’re hurting and they are there for you to help each other.

  • Inform your love ones what you are going through.

I know this may seem strange, because you tell your love ones most things. I have learned that with a chronic illness you tend to hide some aspects of your life, due to not wanting them to see you struggle, bother them, or always tell them bad news. To be honest, it’s important to tell them what is going on to keep them in the loop. For example, I hid a situation where I was constantly throwing up for a while, and having migraines from my love ones because I didn’t want to bother them about my struggles. So they thought I was doing okay and would always ask to hangout, but I had to cancel and it made them think I was blowing them off. It wasn’t the case at all. When I explained what I had been going through, they absolutely understood. Its important to keep your friends and family updated, the more included they are, the more support you will have. They are there for you, and just want the best for you.

  • Don’t give up.

They are finally starting to understand what you are going through and finding some answers. I know this life we have been given is tough but you are tougher. Hang in there and show not just others, but yourself how strong you are. You will get through this, don’t stop fighting.

For those with a chronic illness, you’ve been suffering for possibly months maybe even years. Remember, I know this life we have been given is tough but you are tougher. You deserve as quality of a life as the next person. Stay strong, stay positive, and never give up.❤

*I’m not here to treat, diagnose, or go against Dr. Orders. Just here to provide support comfort and help. *

This post was first seen on lifewithanillness.com

All about Lupus

Lupus is an autoimmune disease, where your immune system attacks your own tissue and organs, mistakenly. According to Womenshealth.gov, 9 out of 10 adults with lupus are women. Unfortunately, there’s no cure, but it can be managed by a doctor and medication. Lupus causes inflammation in the joints, and organs. It also comes with a…

via All about Lupus — Life with an Illness

How a Chronic Illness Forces you to Grow up too Quickly

A chronic illness brings darkness to your life. It brings a cloud of sorrow over you, and everyone around you. A Chronic illness changes your life. You have to learn how to shift your life, to fit this troubling illness into your schedule. Here’s how a chronic illness forces you to grow up too early.…

via How a Chronic Illness Forces you to Grow up too Quickly — Life with an Illness

Inner Strength- Poem

Your world feels like it is crumbling at your feet, All you want to do is climb in bed forever, and hide under your sheet. You know you won’t ever give up, But you just pray and wish the pain will just let up. You have a little piece of light in your heart,that the…

via Your Inner Strength- Poem — Life with an Illness

What’s in my Infusion Bag?

Infusions are used for several different illnesses.When your doctor tells you that, you will now be receiving infusions, it tends to make you feel very overwhelmed. There are also several different types of infusions. Infusions can also range in how long they will take. I had to get an IVIG infusion for lupus, and now…

via What’s in my Infusion Bag? — Life with an Illness

A Chronic Easter Poem

Bright colored eggs everywhere, Love and sunshine fills the air. Laughter and hugs are being exchanged, Kids sneak around switching the eggs, so the original hiding spot is being changed. You hope your chronic pain won’t ruin the day, But you hide the pain at your family gathering so you can stay. Hug your family…

via A Chronic Easter Poem — Life with an Illness

Easter Wreath Suitable for the Chronically Ill

I decided to get into the holiday spirit with this fun and colorful wreath! Having POTS and several chronic illnesses, I always have to battle extreme fatigue, and my hands become numb after awhile. There are a lot of things I am not able to complete but I decided to get involved in the Easter…

via Easter Wreath Suitable for the Chronically Ill — Life with an Illness