2013: Loose Ends

That was the end of the notes that I kept documenting my go around with AMN. I wrote the following, today, 2 August 2021, based on what I can remember. Looking at it all in retrospect, it seems like a continuous, drawn-out rollercoaster ride, with high highs, low lows, loop de loops and hairpin turns, now and again, for an enhanced experience.

Things continued as I thought that they should until sometime in 2011. I continued drinking my Oil and waiting for Trisha to finish the film. Everything seemed pretty reasonable. I had things figured out and knew what to do. No surprises. Predictability was good. I have heard it said that complacency can get you in trouble.

I got a call from Kennedy-Krieger. The promising MRI data was not corroborated by any of the clinical endpoints. “So, what does that mean?” I asked.

What it meant was, the potential benefit of taking the Oil was no longer greater than its associated risks. The boys at Kennedy-Krieger strongly suggested that I stop taking the Oil immediately.

About the same time, I heard that the lady funding the film had lost interest.

While I do not remember feeling let down, I cannot confirm this. I have no recollection of these times. We were preparing to leave California. I suppose that I may have been so consumed by that process that I did not have time to think about it? Who knows? I do not know what to tell you about that one. Which is odd, I had been so engaged, so certain and so ecstatic about what the Oil would do for all of us. To not feel anything at all did not make sense. I do not remember.

I do know that I kept it pointed straight ahead as I managed the arrangements to move myself and young family across the country.

We settled in Virginia, and it felt right. Maybe there was relief in no longer needing to restrict my diet and follow the regimen? Again, another unsatisfactory answer: who knows?

This calm did not last long. A new type of anxiety took charge. Strange new feelings and emotions, very foreign to me.

Tensions started slow at first, before accelerating and eventually growing logarithmically. It was rough. I thought I knew what was going on. I soon realized that I had no idea. Eventually, just as I thought it could not get any worse, on 6 May 2013, my family imploded. After a couple of weeks, the shock of it all subsided a little, but not much.

The smoke began to clear, and I took stock of my new station in life. I was alive, had a job and home. Which were good foundations. I was also now a single parent of three young girls. And a cripple besides. It was hard to figure how this might play out. My experiences in life were of no help. All I knew for sure was that I needed to maintain a stable mind (whatever that was) and do my best to prevent further hemorrhaging. I knew little about the finer points of raising children, all I understood were the basic needs: food, shelter, etc. The balance of parenting, on my own would need to be improvised as I went.

This was a fine kettle of fish, as some wise man once said. With all of the caution that I had exercised coming up, it was unfathomable that I could be in this state. But here I was. Maybe I could best understand it by trying to figure out the events leading up to that cliff in May?

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Why You Should Never Stop Fighting

Last weekend, I went to Michigan, with my boyfriend and I learned a very important lesson. My boyfriend and I were walking on a boardwalk while the sun was setting. The sun was in the process of dipping into the cool blue lake. The air was warm but the sight was breathtaking. As we were…

via Why You Should Never Stop Fighting — Life with an Illness

We Bought a House!

I’m sorry I’ve MIA lately when it comes to writing. I’ve been really busy and took some time to take care of my health, and undergo new treatments. I do have some incredible news; after being sick for 3 years and dating my boyfriend for a year and a half, my amazing boyfriend and I mustered up the courage to buy a home.

It was a long and stressful process, and with being ill, I had to constantly pace myself. I couldn’t have done this process without my family, my boyfriend, and his family; and its truly a dream come true to be able to live in our dream house.

We are extremely happy, and excited to see where this journey takes us. Heres to the start of a new chapter, together.💕💕

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A Chronic Illness Doesn’t Define You

A chronic illness will change the way you live life,

It can make you feel like you’ve been stabbed in every joint by a knife.

It can change how you view things, even your mindset,

You tend to feel like you’re forever trapped in a drowning net.

Your relationships will start to change,

Your life just feels like it has been rearranged.

A chronic illness can change a lot,

But don’t ever allow it to define who you are, no matter what baggage this illness has brought.

You are still you, just stronger,

This illness will not have a hold on you, not any longer. ♡

This post was first seen on lifewithanillness.com

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

Easy Halloween Wreath Suitable for Chronically Ill People

I decided to get into the holiday fun with this adorable wreath! Having several chronic illnesses and POTS, I always have extreme fatigue and my hands become numb after a while. There are a lot of things I am not able to complete but I decided to get involved in the Halloween spirit and make a craft! Remember even though life can be hard, and you’re hurting it’s important to still have fun, and do things to get your mind off of things. I loved this craft and it makes you feel good to accomplish it! Anyone can do it however, for those with a chronic illness and get tired easily this is perfect for you! It was inexpensive, I did it on my couch, and it only took an hour! It didn’t overly tire me out and didn’t make my hands go very numb. I did take several breaks, so the break option is completely up to you! It is an easy project to have a lot of stopping points, therefore, it allows you to take breaks whenever. I bought all of the products at Hobby Lobby, they have a large and fun supply of Halloween options! Lets get started!

Supplies needed

12 Inch round Styrofoam Wreath

Black 6″ Glitter Tulle

Orange 6″ Glitter Tulle

Scissors

A Little Halloween Sign to go on your Wreath (optional)

Hot Glue Gun * Only if you decide to put a sign on it (Optional)

Directions

  • I find it easier to cut a lot of strips first, cut an arm length strip. Fold the strip in half and put the folded tulle under the wreath.



  • Grab both ends, so the tulle is wrapped around the Styrofoam. Grabbed the two ends and pull through the loop, and pull tightly.



  • Make sure the knot is on the outside portion of wreath. The loose end of the tulle needs to stick straight out to provide the tutu wreath look. Where the knot is, make sure you fan out some of the tulle to cover up the white wreath.
  • Repeat steps 1. and 2 until you fully cover the wreath. Fluff out tulle. * NOTE* If there are some tulle that is longer than others you can always trim the longer piece.

  • Optional* If you want to put a sign on it, hot glue were you want the sign and stick it on there. Make sure it is very secure on there.


That’s it! Super simple and also very cute! It’s not super tiring and it gives you something to be proud of! Leave me a comment if you’ve done any Halloween crafts or tell me what your favorite Halloween activity is! I can’t wait to hear from you! Good luck and Enjoy!

The post Easy Halloween Wreath Suitable for Chronically Ill Peopleappeared first on Life with an Illness.

Meet Chance- Future Service Dog in Training

Having POTS has really changed my life. I haven’t been able to walk without assistance for over a year, due to being extremely dizzy and uncontrollable chronic migraines. I also pass out a lot. My family and I made the executive decision to get a puppy and get him trained to be my service dog! The service dog will be able to assist me in public, and also be trained for when I’m home alone to be able to help me when I pass out; or incase of an emergency.

To be honest, I was nervous to even think about getting a service dog. I was afraid when I take him out in public people would judge me or stare. I realized that if a service dog will give me some independence, and be there to help me when needed- then I don’t care what people will think. I decided I need to do what’s best for me. I am home alone a lot, because I work from home. Due to passing out a lot and being dizzy, my family worry about me a lot when I’m alone and also try not to leave me alone for very long. A service dog will be able to help me in case of an emergency and also will be there when I need stability when I walk. I learned instead of caring what others think, I need to get out and live my life and not base my life on others opinions.

After searching for weeks for the perfect dog for me, I found one- a golden retriever. His name is Chance, and my boyfriend and I fell in love with him instantly!

He is super sweet, and we developed a bond right then and there.

When we first brought him home, we felt like we were bringing home a newborn home from the hospital. We

were all nervous on how it would go, and how he would fit in with our other dog and cat. It actually went better than I ever could have imagined.

Chance and my cat- Joey are now forever friends, and Max leads Chance like a big brother around the house.

He is a very playful puppy, and he loves to cuddle.

We put him in puppy class, so he can associate with other puppies and learn basic commands. He is a super quick learner, but he gets distracted easily. He has graduated puppy class and just started the intermediate class.

Chance is teething and definitely loves to chew up shoes! Fingers crossed that habit breaks soon! He tends be become a little crazy, but we can all use a little crazy in our lives. It has really been fun watching him grow up, and develop a personality. I can’t wait for our bond to become even closer as he grows.

This has been an unforgettable journey so far and I look forward to him being able to help me; so I can become more independent, and can go even just to the grocery store by myself. Chance has been the missing piece in my heart I never knew I was missing. My boyfriend and I have truly become a little family with our puppy and its been heart warming. I look forward to sharing my journey with you all.

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What to Pack in your Bag When you Travel with a Chronic Illness

A chronic illness can change your life. It can bring a lot of baggage into your life. In order to survive a long busy day, you may need medication, or an ice bag for your joints. Traveling with a chronic illness can be extremely arduous; because you don’t want to forget anything you may be in dire need of. Here are ideas of what to pack in your bag when you travel with a chronic illness.

  • All of your medication.
  • A pillow and blanket.
  • Drinks in a cooler. *Lots of water.*
  • If available/needed compression socks/stockings.
  • Chapstick.
  • Biofreeze.
  • Clothes.
  • Ginger ale (in case you get car sick/ nauseous).
  • Snacks.
  • List of medications (in case you don’t memorize the order/times of your medications).
  • Phone and charger.
  • Essential oils. (I bring my essential oil bracelet with me when I travel.)
  • A book/kindle/word search/ magazine.
  • If available/needed weighted blanket.
  • Ice bag/ heating pad if needed. ( I use ice for my joint pain & both for my migraines.)
  • A positive attitude, and a never give up mindset. ♡

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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

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The Positive Side of Having a Chronic Illness

Having several chronic illnesses, I’ve learned that with a positive outlook even during the hardest times you can still find the good in situations. Everyone endures a difficult trial, it’s the way you look at it, that determines how you will get through it. There are a million negatives of having a chronic illness, however,…

via The Positive Side of Having a Chronic Illness  — Life with an Illness

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My Journey with a Chest Port

About 3 months ago, I made a really great decision. I decided to get a chest port. I was doing an infusion for my POTS once a week, now twice a week. I have very difficult veins and on an average, I usually get poked about 4-5 times before they find a good vein. When…

via My Journey with a Chest Port — Life with an Illness

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The Diagnosis- Poem

The moment you hear your diagnosis for the first time, your breath that you lost, is something you try to find. You finally figured out why you’ve been suffering for so long, you try not to react, you just strive to stay strong. Tears unwillingly welt up in your eyes, all you want is a…

via The Diagnosis- Poem Style — Life with an Illness

“You Don’t Look Sick”

An invisible illness is not only difficult to deal with physically but it’s also mentally. An invisible illness is defined as not immediately visible. When you’re hurting and miserable the last thing you want to hear is “well, at least you look great, you don’t look sick”. Here is everything you need to know as…

via “You don’t look sick” — Life with an Illness

Tips for Going Gluten Free

So, you’ve just heard you have celiacs disease, or a gluten sensitivity. When you are told to cut out gluten it can become extremely overwhelming. You look in your cabinet and literally everything seems to have wheat in it. So, what do you do next? Here are tips for going gluten free. If you cut…

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Having to Drive Out of State to a Clinic for Treatment

Having a chronic illness, or a rare illness can be stressful. Not every doctor has heard of all the different types of illnesses, let alone knows how to treat them. In most cases, for instance, in my case I have to drive out of state to a Clinic for treatment. Unfortunately, going to an out…

via Having to Drive Out of State to a Clinic for Treatment — Life with an Illness

What I Blog About

I had the pleasure to be featured on -what you blog about. Thank you so much for asking me to share my story on your blog! Please make sure you click on his link below! Life with an illness blog My blog is about sharing my journey with others of having several chronic illnesses. I…

via What I Blog About — 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

Grieving with a Chronic Illness

With a chronic illness, there is no cure. It is all about treating the symptoms and learning to live life with it. It’s like an enemy you can’t get rid of. Its hard to cope with at times. For me, I was working, in college, and training for a half marathon, and one day it…

via Grieving with a Chronic Illness — 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

Migraine Remedies

Unfortunately, most people have experienced the excruciating pain of a migraine. The agonizing feeling when your head throbs, and pulses. Light and noise can cause a piercing pain. The pain is so violent that you feel sick to your stomach, and maybe even throw up. It’s absolutely horrendous, and terrifying. Due to the excessive amount…

via Migraine Remedies — 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

Calling Those with a Chronic Illness Lazy

Having a chronic illness, is honestly brutal. We are always faced with hard trials, and dealing with intense pain. It’s like constantly living in a nightmare, that you can’t wake up from. It’s extremely hurtful, and a huge letdown for someone to call those with a chronic illness lazy. Unfortunately, it’s common to hear. A…

via Calling Those with a Chronic Illness Lazy — Life with an Illness

Easy Ways to Organize your Medication

With having several chronic illnesses, my medication list is extrmely long. It can often become overwhelming looking at my list and trying to organize it. It’s also very easy to forget I took a pill, or take a pill and forget I took it. Here are easy ways to organize your medication. Use a pill…

via Easy Ways to Organize Your Medication — Life with an Illness

The Power of Staying Positive

With having a chronic illness you are constantly being thrown difficult trials. Having several chronic illnesses myself, its been the hardest thing I have ever been through. Even though I struggle, I always get asked how I stay so positive and how I have a great attitude through all of this. Everyone has their bad…

via The Power of Staying Positive — 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

Thank You for 2,000 Followers!

Wow! I am speechless!♡ I just want to take this time to thank you. Thank you, for reading. Thank you, for your support. Thank you, for helping me spread awareness, and helping others. Two years ago, I got sick. After countless amounts of tests, doctors, trips to clinics, and hospital stays I still am fighting…

via Thank You for 2,000 Followers!! — 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