Shake it Off

Too many people are rude to Spoonies. Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full time job. Simple tasks are draining. Some people go out of there way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague.

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strange towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phases like: 

But you don’t look sick

You need to be more positive

Have you tired…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It”s gonna be alright

Sending lots of spoons, prayers, and hugs. ❤

Seriously, I Can’t Hear You

I can’t hear you. Could you please repeat that? No, I did not hear you come in. I am completely serious, though it is hard to believe at twenty-three. I previously blogged at my hearing loss mentioning a couple unstable theories. Shortly after, receiving my HHT diagnosis, I was told I needed my hearing checked. The doctor who relayed the message was skeptical because she had been on my case for a brief amount of time and was unaware that I had issues hearing. To be fair, the doctor who ordered it was never told either. Simply, because it never came up, furthermore, it did not seem relevant

I went through an intense hearing test while I was having no trouble hearing. I found out a few days later that I have extremly mild bilateral hearing loss. However, was not mentioned at the appointment, I am guessing because it is so minor. There isn’t anything to do, but it is a great thing to know.

If you went undiagnosed for any significant amount of time you understand the value of a reason for dictating symptoms. Though there are an overwhelming amount of questions at times without answers, having a name to the monster helps. The name doesn’t not by any means make the road any easier it just makes someone feel validated in their bodies rebellion.

 

Great Spoonie Volgs

YouTube is an interesting place. Allowing for entertainment, vlogging, and education. I never used Youtube much until I went away to college and needed to force myself to rest. Of course,  finding tips for living with a chronic illness and encouragement was a plus.

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Kelly Patricia is one of my favorite YouTubers and a huge inspiration. Kelly has a gift for encouraging others. She also has amazing faith. Kelly has an interesting mix of chronic illnesses and is still partly undiagnosed. Her story is extremely relatable, especially with the struggle of finding decent doctors. Some of her illnesses include IBD, Endometriosis, and Arthritis.

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Lets Talk IBD

Maggie has a great channel featuring Inflammatory Bowel Disease. She has a J-pouch and information on doing feeding tubs as well as coping tips for life with a chronic illness.

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Inflamed and Untamed

Sarah also has IBD and is an excellent advocate. She is blunt. She has battled many surgeries, hospital visits, and flares. She has partnered with the Chrons and Colitis Foundation. She has been on multiple IBD discussion panels and has a lot of knowledge about IBD.

 

Spoonful of Spoonie Encouragment

Mornings for those with a chronic illness are a struggle beyond words. Waking up and willing our bodies to function is a fight. Here is a spoonful of encouragement for spoonie warriors. Happy Monday, brave friend!

You have victoriously made it out of bed this morning. The symptoms and pain are already overwhelming, but you’ve got this. You only need to take today one minute at a time. You have all the strength you need, even though it might not seem that way. Anxiety and depression attempt to dictate your day. Take a breath. Take a break.  Get some rest. Keep fighting to make today the best day possible.

You have been chosen to walk this path. It is one filled with heartbreak, disappointment, and setbacks. Walking the path of someone who is chronically ill is a challenge to say the very least. Being sick has most likely disrupted your flawless rhythm with life. It has stopped you dead in your tracks. Your illness has tried to toss your dreams out the window.

Though this path is difficult, I assure you there is a lot of beauty to be discovered. Sure life is not what it used to be, but the song you sing is just as beautiful. There is hope, joy, love, laughter, and life to be found on this path. You will be able to recreate your wonderful dreams. You are still you, despite your illness. You are an amazing and beautiful person with a flawless story and a huge purpose.

    There will be days that you become overwhelmed and feel completely alone. Your feelings are understandable, however, I promise you, you do not walk alone on this path. There are people who care about you, people who understand how difficult the journey is, and people who want to support you.

I am proud of all you have accomplished. I know you will thrive today. This week will be lovely simply because it is the only choice. While you don’t need to be positive all the time you need to take baby steps forward. You are doing amazing. Raise your coffee (or tea) to a great week warrior!

1 in 5,000

We always knew I was different. Completely aware I was rare. Everyone has always made jokes about it here and there due to the silliness of it all. But it wasn’t until recently that it was discovered that I am one in 5,000-8,000 people rare. More rare than just a few extra parts. More rare than a strange combination of chronic illnesses.

This journey officially began this past fall with a bleeding flare. I was bleeding easily while on my normal steroid dose. It was irritating me enough to mention it to my doctor. After extensive research and dissing it all we agreed that EDS was a possibility. I was advised to see a geneticist. A three-month wait and a two-hour appointment appeared to be yet another dead end. The doctor was not educated enough in each type of EDS to accurately diagnose EDS. While I knew an EDS diagnose would not change my treatment plan I was extremely frustrated. I was left with no answers to my bleeding which was progressing and a bunch of symptoms that did not fit into a symptom list of any of my current illnesses.

While I knew an EDS diagnose would not change my treatment plan I was extremely frustrated. I was left with no answers to my bleeding which was progressing and a bunch of symptoms that did not fit into a symptom list of any of my current illnesses. (*Note there is still question if EDS is present).

I moved on as we all do when no answers are clear. I had a voicemail when I returned home one afternoon. Neither my mom nor I recognized the doctor’s name left for me, so I concluded they had the wrong person. I returned the phone call innocently without much thought. Little did I know it would change my life.

I was told I have HHT. This is the reason my POTS is out of control. Due to my migraines, I would need a brain MRI because they highly suspect that there is something linked to this illness present. Additionally, I would need testing on my heart. Just like that, she wished me a good day and the phone call was over.

I had three initials because the person I spoke with did not know how to pronounce the name. Hereditary Hemorrhagic Telangiectasia. Locating a description was a challenge. Gaining an understanding of the big picture of how this illness had been affecting my body for twenty-three years felt impossible.

“HHT is a hereditary disorder that is characterized by abnormal blood vessels. A person with HHT has a tendency to form blood vessels that lack normal capillaries between an artery and vein. This means that arterial blood under high pressure flows directly into a vein without first having to squeeze through very small capillaries. This place where an artery is connected directly to a vein tends to be a fragile site that can rupture and bleed.

An abnormality that involves a larger blood vessel is called an arteriovenous malformation (AVM). Some people with HHT will also have AVMs in one or more organs. AVMs occurring in the lungs and brain and can lead to serious complications. Everyone with HHT should undergo screening for lung and brain AVMs because if these are detected, they can be treated. The HHT Foundation recommends that all patients and families with HHT be assessed at an HHT Treatment Center for proper screening and treatment.”

From my reading, I learned that at least three genes are mutated in this disorder. There are far more questions than answers as there are with most rare diseases.One article reported less than a dozen doctors who specialize in this disease in America.

Plenty of testing needs to be conducted to give them a full picture of how this is affecting my body. So far a special hearing test/ doctor appointment is set up.  We are waiting to see what heart tests should be run and how often. Lastly, a brain MRI will need to be approved by the insurance. This is half of my medical mess at the moment.

Coping With a Rare Disease:

I have coped with chronic illness by learning as much as possible, then educating others. However, it is impossible for me to gather the amount of information I desire because it simply does not exist. Therefore, my coping methods need to be adjusted. I am confident that connecting with the rare disease community will provide comfort for me. Furthermore, I am asking as many questions as I can come up with for my medical team and setting realistic expectations because they are learning with me.

Each illness comes with a set of emotional struggles. It is tempting to go numb but feeling the emotions is an important step in grieving. Each illness seems to shape our character. I am taking HHT along with all my illnesses one hour at a time with a smile and plenty of uncertain tears.

June is HHT Awareness month. “Light your candle with us on June 23rd – Global HHT Awareness Day – to honor those with HHT who bring light to the world.”

Debbie to the Rescue: Life with a Service Dog

Please give a warm welcome to Sammi who is an inspiration to everyone she encounters. A while back I posted on Chronically Hopeful asking if anyone with a service dog would share a little bit of their story. I am honored that Sammi said she would share because through those weeks I have had the honor of chatting with her which is something I cherish. I know her story will deeply touch you!
Every morning when I open my eyes I’m greeted by blurry vision, the inability to hear, and the dread of what’s going to hurt first today. In addition to all of those negative things, I also wake up to a little wet nose attached to a tiny yellow lab telling me mom it’s time to get up I’m hungry! I roll over and feel around for my glasses but because of that little ball of energy I have waking me up, I don’t need to reach for my hearing aids. That pup is my ears, my lifeline, my hearing dog that I truly don’t know how I lived with before I got her.

I was born with Stickler Syndrome, a primarily genetic collagen deficiency. I say primarily because I’m one of the lucky few to be the first generation with this syndrome in my family. Here is the short answer to those who don’t know what it is(which is 99% of the people I meet): Stickler Syndrome is a progressive connective tissue disorder that affects my hearing, vision, and joints.  To elaborate a bit more – I am severely nearsighted, at very high risk of retinal detachment(which I have thankfully avoided so far), I lack collagen in my joints which results in widespread, daily, chronic pain that I honestly don’t know what’s going to hurt day to day. Finally I have moderate/severe bilateral sensorineural hearing loss that can progress at any time.

Now that there is a bit of a backstory to me more about my service dog, Debbie. I started research into obtaining a service dog 6-7 years ago when I was about 18 and took several years debating if it was a good idea for me. I worried if I was disabled enough to qualify, would one truly help me, could I care for a dog myself, so many things discouraged me from applying for several years. Finally, at 21 I really took a good look at my life and one thing that really struck me was I was truly scared to be alone. My hearing loss made being anywhere without someone with me something I dreaded. I may be able to hear fairly well with my hearing aids in but only if the person is looking at me and I’m not distracted. I have no sound directional awareness, I may hear someone call me, or a car beep or an emergency vehicle coming but where that noise comes from is what I can’t figure out and that can be dangerous. In my research, I found NEADS, based in Princeton, MA. Once I came across their site I knew I found who I was looking for and I hoped they could help me.

A hearing dog has the ability to quite literally be ears that actually work for the handler.  Debbie alerts me to everything a person with normal hearing may take for granted that they can hear. She tells me when someone is trying to get my attention when a car is coming up behind me, when the fire alarm goes off, when I drop my keys and don’t hear it, and many other ways.  Due to my chronic pain, Debbie was also continued with some basic assistance dog work as well as her hearing dog work. She is able to pick up my debit card/money or my cell phone if I drop it, or press the handicap door button if needed. There are not many things she can’t do!!

NEADS is truly an amazing organization from the second I submitted my application and still through today, 2 1/2 years after I brought Debbie home. What truly drew me to them was that they provide service dogs to veterans and victims of the Boston Marathon Bombing for no charge at all. Being from Boston the fact that they helped the victims of that atrocious crime really stuck with me and I knew that they were an organization I could and would love. They also use local prisons to help train the puppies that go through the program, and as part of team training on campus, we have the option to formally meet the inmate handler. This opportunity was truly amazing and I’m so proud to have a dog from this program, especially after seeing the pride and joy all of the inmates expressed when I met them.

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The process I went through:

  1. 12-15 page application submitted online, which detailed what my need was, medical documentation that I had the disability I claimed, and character letters from someone who knew me.
  2. After my application was accepted I had to go to the NEADS campus for an in-person interview that was several hours long. We went over my original application and what my needs truly were. I was officially accepted that day and the wait began.
  3. I received an email detailing who my dog would be and to set up what two weeks I could come to the campus to do team training.
  4. In person, team training was two weeks long. I lived on campus for that time with three other women who also were training with their new service dogs. We had group training every day and by midweek had the dogs full time. Having those other three women was truly amazing we are still all friends today and they are the reason I was able to get through my first year with Debbie as easily as I did.
  5. The final step in this process is graduation! NEADS holds a formal graduation for all successful teams 2 times a year. While Debbie was already working for me having graduation as an official way to say yes we can do this is priceless.

Having a service dog is not perfect, there are days that Debbie has an off day – she is a dog after all! People still do not understand that a young, seemingly healthy (to them) woman who is not blind may need a service dog for another reason. The laws have not caught up to the new craze to claim your pet is a working dog and there are stores that I am not comfortable going into alone just Debbie and me because fake service dogs are not told to leave. But despite all of these negatives making the choice to get Debbie has been the best one I’ve ever made. I can now confidently go out alone, be home alone and move out on my own and feel safe. I know that I will ALWAYS be told when someone is at the door when the fire alarm is going off when a car is coming up behind me if someone is trying to talk to me. Debbie truly is ears that actually work for me and I am beyond thankful for her and the life she has given me!

Preparing For A PICC Line

I have been doing Saline for POTS for about a month now. The improvements have been astonishing to everyone. While getting treatment twice a week I was not falling, improved heart rate improved blood pressure, and less pain (most times) with passing stones. Being able to shower and not get dizzy is something that is hard to put into words. Simply amazing.

We are attempting to taper the steroids a little. However, it is quickly becoming apparent that my body is not okay with this move. The pain and fatigue are expected. In addition, my blood pressure is regularly crashing. My POTS doctor put an immediate pause on the tapper to avoid me being admitted to the hospital. We are now preparing to have a PICC line placed so that I can do fluids at home. I have gotten to the point with my POTS that I can become critically dangerous at any point. It’s not just a little low blood pressure but extremely dangerous low blood pressure (that refuses to respond to salt).

With my final week of school, I was only able to get to chronic care once this week. It was a good learning experience for everyone involved showing how well I respond to Saline. The combination of tapering and less Saline has been difficult.

The goal is to do this short term a few months, but it is a see how it goes type of a deal. We have opted for the PICC line mainly because of time frames (a Midline wouldn’t stay in as long and the doctor thinks the Port is too drastic). Additionally, it is easier for me to do things on my own in comparison to a Port.

“A PICC line is a thin, soft, long catheter (tube) that is inserted into a vein in your child’s arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood from the heart. The PICC line is used for long-term intravenous (IV) antibiotics, nutrition or medications, and for blood draws.” (chop.edu)

PICC lines can be used in many different illnesses such as Lymes, EDS, POTS, CF,  and IBD just to name a few. Others with chronic illness may use it to give antibiotics or to get TPN.

Many people find medical procedures intimidating. Here are my preparing for a PICC tips!

Educate Yourself: Your doctor will give you information but take the extra step. I would suggest reading three to ten articles from reliable sources. Read about how it is inserted and how to care for the line. Youtube also has some solid information.

How is the PICC inserted?

  • A specially trained nurse or doctor will use an ultrasound machine to find the veins in your upper arm.
  • Your arm will be cleaned and covered with a sterile cloth to prevent infection.
  • Medicine is used to numb the area where the PICC will be placed. The PICC will be inserted into a vein just above the bend of your elbow and guided into a large vein in your chest. Most patients feel little or no discomfort during this procedure.
  • Once the PICC is in place, it is held to your arm with special tape and covered with a sterile dressing.
  • A chest x-ray is taken afterwards to make sure the PICC is in the right place.
  • You will be able to bend your arm and use your arm just as you would without the PICC in place. my.clevelandclinic.org/

Connect With Someone: Find someone with a PICC line to connect with. If you are unsure where to start check out a Facebook support group. In addition, talk with a family member about it and at least one friend. Those you love can offer a unique perspective.

Supplies: There are some things that are included like the saline flush, your meds, and the tubing. I decided to invest in a PICC line cover to wear during the day. There are so many cute options these days! I got my cover from Sleek Sleeves on Amazon. I also invested in a shower cover which I am hoping works like a charm.

Additional Tid-Bit Tips: 

a1562040895_10.jpg get the PICC Line wet.

Know the signs of an infection/ know when to call the doctor

Find out if you have any restrictions with it

Know how to use it (A home nurse should stop by to give you a crash course)

Have a plan to infuse on the go if needed so that your not stuck at home if you feel well enough to go out

If you have a PICC line comment your tips!