When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.

 

 

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Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 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. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 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 their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.

 

Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely 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 phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

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

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤

To The Girl With The Bruises

Girls receive the message that they need to be flawless physically which is impossible. They are ashamed too often of bruises, rashes, stride marks, or other physical changes due to things outside of their control. No one should feel ashamed of their body because of their invisible fight. They hide the imperfections at all cost.

To the girl with the bruises from falling too often because your body cannot remain up right, your bruises are beautiful.

To the girl with the bruises from unknown causes, your bruises are beautiful.

To the girl with the bruises from bumping into things because of balance issues your bruises are beautiful.

To the girl with the bruises from a blood disorder, your bruises are beautiful.

To the girl with the bruises from abuse, your bruises are beautiful.

To the girl with the bruises battling her own body and daily fighting for her life, your bruises are beautiful.

Your bruises are a part of you for a few days, weeks, or maybe a season of life. They do not define you or tint your beauty. There is no reason for you to feel ashamed. Your bruises are beautiful because they represent your invisible fight against your body.

They are beautiful because they are proof that you never give up. You have courage, strength, and dedication pushing through the most difficult times. You might need a break or time for a melt down which is okay but you continue moving forward.

Your identity is not rooted in your looks. Your value more than skin deep. Your heart is stunning. You have courage that many people only fantasize about. You are an inspiration and a blessing beyond words. Sweet friend, your bruises are beautiful.

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!

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.

 

Saline Update

I got my second round of Saline at Chronic Care earlier this week. This time I got two liters over about four hours. It was much longer than I had expected. The staff there was fantastic. The doctors have set me up to have someone come in to do a safety check in my house to accommodate things for when I fall and I got another neurology referral.

I was impressed with my results following my first Saline treatment. I was able to shower without feeling dizzy, walk in the store twice, and did not fall for a week. Pretty amazing stuff! It was a 90% improvement with that treatment.

During this infusion of Saline, it was noted that my blood pressure had drop fairly low-mid 90s /60. I do feel a big difference, but some dizziness most likely blood pressure related. The dizzy spells improved about 75- 80% this time which is still excellent.

I have another infusion Monday. Then meet back up with the doctor a week later. It is a very promising treatment at this point in time, which I am hoping to continue.

A Mother’s Perspective: Chronic Illness

I am so excited for today’s post. We have a courageous mother of a daughter with several chronic illnesses. It has been an honor for me to speak with her briefly and to read a bit of their inspiring story. I hope you are encouraged. ~ Victoria

I am Kimberly, a full-time single mother, but more importantly mother of a teenager with chronic illnesses. EDS, POTS, MCAS.
Receiving a diagnosis is not a destination, but more so a journey.
Here is  a brief account of our journey to date:
It seems like yesterday on one hand and a lifetime on another. Three years ago during a rheumatology visit, unexpectedly during examination, the physician began piecing random dislocations, atrophic scars, fatigue, velvet skin, and overall illness into EDS. As he was identifying pieces, he stated this appears like Ehlers Danlos syndrome. I have worked in the medical field as therapist for 20 years and this was new to me. So like most, I instantly googled everything I could sitting there. I recall immediately being referred for blood work, Physical therapy, and cardiology that same day. Upon leaving his office I don’t think I will ever forget the look on his face. It was one of concern, sadness, and unknowing to me an awareness of a journey that was heading our way. As my daughter and I sat in cardiology she jokingly ask “so what do I have”? We proceed to laugh as she said EDS meaning explosive diarrhea syndrome. We laughed and I knew whatever it was we were going to conquer it.
As time progressed with additional falls and dislocations therapy ensued. It suddenly appeared dizziness and nausea were occurring. New referral and now POTS (Postural orthostatic tachycardia syndrome) diagnosis added.

Ok, but now what about these strange rashes. Well, that lead to MCAS(Mast cell activation syndrome). A few other diagnosis came along being eosinophilic colitis and pineal brain cyst through testing. Most recently TMJ and cervical compression issues also noted.  If you have been through the diagnosis process you know it’s not so easy as picking up the phone and immediately obtaining a physician appointment. Some list were 3-6 months long with genetics 1 year. Then you add follow-up visits for a wide range of disciplines. It’s overwhelming and difficult to manage a ‘normal life’ whatever that even was.

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In gaining awareness of these disorders and living it daily I have found a new appreciation for anyone experiencing these. I have seen the suffering from physical pain, fatigue, and mental components from anxiety/depression that a teenager should not have to deal with it. Being a teen is hard enough, let alone adding a chronic illness. Yes, it’s a struggle. Do I still feel we  will conquer this….. no. We have accepted at this time there is no cure. We manage symptoms. Do I feel deflated…. yes. As a mother, I like most want to fix my children’s problem. I have found that being supportive and her biggest fan is the best I can do right now. I have listened to her requests to give her more control when she declines testing. I get it when she says “why should I it doesn’t change or fix anything”.
I want others to know it’s challenging as a parent, but it will be ok. You have to be prepared for sudden ER trips that will change your family plans, hoping that loud sound wasn’t a fall or passing out again, keeping a watchful eye for strange rashes, preparing for school IEP meetings, and wow what about that mediset. Goodness, the medications seriously is this all? Expecting a teenager to recall all these and learning to fill set herself…. What happened to driving, boyfriend, and social issues teenage parents have? They are still there, but different. Friends change, the real ones stay, but it does change. No one prepares you for this.
With all the losses you feel, I promise that if you embrace the journey and take the good with the bad it makes life better. I don’t know what the future holds, but I am hoping through advocacy and research more treatment options become available. I know joining a support group locally was one of the best things I did. Talking to people that have been where I am and offered supportive listening. I am forever grateful to them and blessed to have a wonderful family that help. Are there days when I’m mad… yes! I’m angry and scared. What happened to college based on interest, not physically accessible and near physicians in the area!
You as I have learned, having a chronic illness, is life alternating for everyone. I surely wish my daughter didn’t have it. However, she does and I intend to ride this journey with her and advocate to the best of my ability for her and others like her so that there is dignity, respect, and research to aid in hopes of a cure one day. This is my journey and hope for a final destination.
Chronically Hopefully,
Kimberly