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!

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

I am honored to introduce to you a beautiful Lupus warrior. Aliccia is sharing an amazing post with us in honor of Lupus awareness month. Please share to help us raise awareness! Who better to tell you more about this courageous warrior than Aliccia herself. A huge thank you to Aliccia for sharing some of her story with us.

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Hi! I’m Aliccia and I’m 24 years old. I love tea, Japanese cars, Netflix, good books and cold weather. I’m a Californian currently living in Texas with one fur baby named Takata. I like smiling, and I am proudly one of Jehovah’s Witnesses. I’m obsessed with galaxies and I like to write on occasion.

 

For When I Am Weak, I Am Powerful: Finding Peace With My Disease

By: Aliccia Rico

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My quest started in late 2015, on a cold November morning. I couldn’t take the pain and discomfort of being in my own body anymore. Selena Gomez had been all over the media talking about how she had a disease called Lupus, and I’d been battling some sort of illness that oddly sounded just like the one she’d been interviewed about. It seemed as though I’d been dropped off in the wilderness and told to make the best of the situation… Even though the joint pain and my hair falling out drove me crazy, almost to the point of a nervous breakdown. I’d joke about being a pro napper, but fourteen-hour stretches wouldn’t even aid the fatigue I felt on a daily basis… Let alone be normal hours of sleep. This wilderness I was in felt isolated from everything I thought I knew about myself, and those around me. Who could I trust with telling about this thing that has been plaguing me? Am I crazy?

I had been seeing a rheumatologist that never took my symptoms seriously. He had me on a Remicade infusion therapy that made me worse than I was before. It took me three infusion sessions and hundreds of dollars out of my own pocket to leave this office… He even laughed in my face when I was diagnosed with pleurisy at an urgent care. I’d fallen into a depression, even when I started seeing my current rheumatologist who diagnosed me as having “Lupus-Like Syndrome”, she doesn’t want to diagnose me with Lupus officially yet. The light at the end of the wilderness I was in got dimmer and dimmer. It felt as though the life was being slowly drained out of me, and I started giving up all hope that I had.

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I found myself months later standing in my restroom, my face wet with tears and red from inflammation. The frustration finally hit its peak the moment I got out of bed. My hands couldn’t open all the way, my hair lay in the sink in chunks. I couldn’t recognize who was staring back at me, the breath gone from my lungs. How did this happen? Why did this happen? I threw all the items on the counter onto the floor, screaming at the top of my lungs. I fell to the floor and started sobbing, trembling from confusion, sadness, and anger. I was angry at my body, angry at how much more my hands and arms hurt from my moment of insanity. All I wanted was for all of this to be over. I looked up to the ceiling, my breath catching in my throat as I try to clear my head. My phone had been ringing for the past five minutes, and I didn’t care.

 

Finally, I grabbed my phone as best as I could, seeing a familiar name across the screen. I unlock the phone, my breathing slowly getting back to a normal pattern. I fixated on the words on the screen, making me cry even more.

I don’t know how it feels,
but we’re in this together.
You’re not alone… I love you.

 

I closed my eyes and started praying. The light at the end of this wilderness had been in front of me all along! Years of frustration, agony, and depression began pouring out of me. I thanked my God, Jehovah, for giving me such an amazing person to help me through this hardship, and for never abandoning me. The more and more I poured my heart out, the more I felt the strength building in my bones. The thing about faith is that it’s based on trust, and trust is what I had to give to my God to endure the obstacles put in front of me. That day, my whole outlook on my disease changed in various ways. I put away the makeup that I would use to hide my skin, I chose to smile and not dwell on the pain or weaknesses that I had now become accustomed to.

 

I refused to stay complacent, depressed and have a “woe is me” attitude. I’d read stories online for support with this disease, but none of them were even remotely positive. The whole goal with living with any type of autoimmune disease is to find positive support and know that you’re not alone. I didn’t and don’t want special treatment, nor do I want to be a walking billboard of the typical “but I don’t look sick” movement. I want people to see me for who I am, not the unfortunate disease I have. Facing each day with a prayer, relying on the support of my spiritual family and friends and telling myself I could face the day helped me personally so much.

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In one of my favorite scriptures in the Bible, the Apostle Paul wrote, “So I take pleasure in weaknesses, in insults, in times of need, in persecutions and difficulties, for Christ. For when I am weak, then I am powerful.” (2 Corinthians 12:10) I take those words to heart because in my weaknesses, I have been the most powerful. While in a flare up, getting out of bed is an accomplishment, making tea is a milestone, getting dressed is a feat. My faith is stronger than my weaknesses and my illness, stronger than the anxiety and depression that I face, my faith gives me the strength to walk when I am so physically tired that I want to collapse, it gets me through each day.

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That day I had my breakdown, I was at my lowest point in the wilderness called Lupus. My faith brought me out of the wilderness to a brighter, clear road that showed me that yes, I do have an autoimmune disease, but I can get through these challenges I face (even as simple as opening a jar) no matter how hard they are. Everyone’s autoimmune disease quest is different, everyone copes with things differently and fights their battles in their own way. I admire those who are enduring chemotherapy, those who are mothers and fathers while having a form of autoimmune disease, those ones who need canes and wheelchairs. Your strength is admirable, and in no way could I ever make light of what others go through. We’re in this together, and we will get through it… Day by day.

 

Remember, when you are weak, you are powerful.

 

Undercover Zebra

I am so excited to have an amazing EDS warrior guest post today, Hana. Please share to help us raise awareness for this rare disease.
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Ever hear of Undercover Boss? Well, this is Undercover Zebra: Where chronic illness warriors go undercover as healthy individuals to chase their dreams in the real world. On this episode, we have Hana Belanger, an 18-year-old girl with the main diagnosis of  Ehlers-Danlos Syndrome Hypermobility Type (hEDS) who dreams of being a cinematographer in the music industry. As an adolescent, she must figure out her own identity, chase her dreams, and not let a rare disease define her. If you think this to be a challenging feat, then you are right. She is…an undercover zebra.
I start every morning the same way, not wanting to get out of bed. Whether it be my 5:45 school alarm to Bowling For Soup’s “High School Never Ends” or sleeping in past noon on the weekends, the act of waking up is just another arduous chore no likes to endure. So far, just like any other teenager in the world, or really, any non-morning person in society.
Once I finally persuade myself it is worth getting up, I “oil” my joints with either Icy Hot or Arctic Ice analgesic gel. Whichever I just happen to have on my bedside table at the moment. Hypermobility is a symptom of EDS, however, in the morning I find that my joints much rather be stiff with pain, like the Tin Man from The Wizard of Oz. I also tend to take this time to pop back in any joints that may have popped out of place while sleeping the night before. Got to love all those constant dislocations and subluxations. More symptoms due to the faulty collagen my body produces. Mornings with a connective tissue are never boring.
Next step is getting dressed. My favorite comfortable get up has to be pajamas, especially my zebra print ones. Sadly, school dress code does not allow for pj’s. Next best outfit of choice? a baggy band t-shirt and a pair of leggings. Don’t forget to accessorize with wristbands, a mood stone choker, and a plethora of braces and KT tape to keep all those joints in place. Pretty sure my joints like to go out more than I do. I always am found wearing my knee braces, but my collection expands to wrist braces, ankle braces, a back brace, and even a neck brace. I also have a cane I decorated in zebra print duct tape because when you need some extra support you have to make sure its cripple swag awesome.
My morning concludes with the breakfast of champions: AKA medication and vitamins. Then, on school days, I rush off to spend 6 long hours so I may be educated enough to graduate. After 12 years of this grueling routine, it does become tedious. I also have a work study internship with my local cable access station, a slam poet, and freelance videographer. The last three are the most fun I believe and give me a huge platform to be myself. When I am on stage or behind a camera I do not feel like the sick kid. I feel like a poet. I feel like a professional videographer. I feel…human.
Many days it is hard to hide the pain I am going through. EDS likes to throw curve balls more than Alton Brown on his show “Cutthroat Kitchen.” Often I wake up with migraines and nausea, which takes hours and even sometimes all day, despite medication. I have injured myself in school walking to lunch and working a one-hour film shoot. It’s as if EDS does not want me to live my dream.
But I will not cave into this awful disorder. That wouldn’t be very punk rock of me to give in. I know my limits and I go as close to the line without crossing over. I make sacrifices when it is safe to do so to enjoy myself. I have been to music festivals and concerts, filmed all day events, went to my Junior Prom, etc. EDS does not have to rule how I live. I just have to adapt to my circumstances in order to survive.
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Illness Awareness Month

Illness awareness months are a big deal providing an avenue for education. Furthermore, it gives those enduring the illness a set apart time to celebrate all the victories they have had over their illness. It seems more socially acceptable to take off the healthy person mask revealing how life is with a monster on the loss inside. Our awareness month also gives us the much-needed reminder that indeed we are not alone despite the feeling of isolation. It is a cracked door allowing outsiders to get a tiny glimpse into living with a chronic illness.

May is one of those months that someone was like let’s see how many illnesses we can raise awareness for in this month and they might have been a bit overzealous. On one hand, it’s great, especially if the majority of your illnesses have the same awareness month. On the other hand, it is a bit much in a short month.

With a complex illness, you could easily take a year or more talking about the illness, testing, medications, and daily living. Times that by over 12 is hectic. To complicate things a bit more the majority of us have more than one chronic illness!

  • American Stroke Awareness Month (promoted by the National Stroke Association)
  • Arthritis Awareness Month
  • National Asthma and Allergy Awareness Month
  • National Celiac Disease Awareness Month
  • Hepatitis Awareness Month
  • Lupus Awareness Month (promoted by the Lupus Foundation of America)
  • Melanoma/Skin Cancer Detection and Prevention Month
  • Mental Health Month
  • National High Blood Pressure Education Month
  • National Osteoporosis Awareness and Prevention Month
  • Preeclampsia Awareness Month
  • Inflammatory Bowel Disease: Chrons & Ulcerative Colitis.
  • Fibromyalgia
  • Ehlers-Danlos syndrome

I currently have a diagnosis of the following just from this list: Lupus, Ulcerative Colitis, Osteoporosis, Arthritis, and Asthma. In addition, I might have Autoimmune Hepatitis and Ehlers-Danlos Syndrome.

I always like to challenge everyone to learn one new thing in May about one illness. I am a strong believer in education others about chronic illness. I have encountered medical professionals who have been in need of education (I am not trying to be rude in any way). I have had people in the medical field ask me what’s Lupus? A basic understanding is helpful. Knowing just a little bit helps, even if you are not sick, for the day you encounter someone with an invisible illness.

I could go on all day on this topic, but I won’t as I am sure you have plenty on your to-do list today. Have an amazing day! Be sure to Like Chronically Hopeful on Facebook and subscribe to this blog! There will be a handful of guest bloggers which I am SO excited for!

Happy Monday

Happy Monday, precious friends! Monday’s don’t have the best response in our society as we tend to focus on the negatives instead of the positives of the week ahead. Monday’s might not be your favorite day, but it is a lovely reminder that you have been blessed with another week of opportunities. Yes, there are plenty of struggles you will encounter and things you would prefer not doing but there are many positives of a new week. Pause to take in the simple treasures of life. Greet this new week with your beautiful smile and open arms. You will have victory over this week. You will be a blessing to a number of people. You, my friend, will thrive.

From Honest Moments With God:“My soul is dry and thirsts for You, True God, as a deer thirsts for water. Why am I so overwrought, Why am I so disturbed? Why can’t I just hope in God? Despite all my emotions, I will believe and praise the One who saves me, my God.” Psalm 42:1 & 11

“My soul is dry and thirsts for You, True God, as a deer thirsts for water. Why am I so overwrought, Why am I so disturbed? Why can’t I just hope in God? Despite all my emotions, I will believe and praise the One who saves me, my God.” Psalm 42:1 & 11

God,

Increase our soul’s thirst for You, the Living God. You have seen the tears cried behind closed doors. The ones in the dead of night. You understand the heartbreak of shattered dreams. The depth of the effects of broken relationships.

People mock me and question my faith. Asking where You are in my time of need. They question Your goodness. Question how You could allow suffering. I will remain unshaken, firm in Your promises.

Help me in this holy time, at Your feet, to pour my soul out to You. Enable me to be transparent. I surrender every burden, fear, question, and emotion. Empty me of myself. Free me from all the clutter in my heart and mind. Consume me with Your Spirit.

Direct me in Your precious love. Renew my hope day by day. You are my mighty protector. I rejoice in Your sovereign name. I have witnesses Your goodness all the days of my life. I extol Your Majestic name.

Amen

 

 

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