Unable to Eat

I was feeling good. Really good and beginning to actually function. I was hungry occasionally, tolerating sun, able to accomplish more, losing water weight, less pain, and more energy. I was feeling more confident about my treatment plan and relived that my efforts were paying off. I had visited family to help out with an emergency. Than of course, went back home. The following morning I felt a bit off. I thought I just over did it a little. However, by the following morning it was clear something was wrong once again.

I began out of no where vomiting. To be clear I never vomit with any of my chronic illnesses. I had the runs. Unable to eat and barely able to drink. I ran an extra bag of Saline fluids because it was a Saline day thankfully. I toughed it out all weekend. Finally giving in I went to the Emergency Room only to be “accidentally” sent home. I continued to get worse each day. I began having palpitations, chest pain, all my pain was intolerable by this time, and unable to eat more than two crackers at a time. Due to vomiting I missed all my meds, vitamins, and supplements for about two weeks. On the bright side I’m certain now this plan works.

I have never had to go to the emergency room twice in one week. I was hesitant and frustrated. It was not a smooth trip by any means. In fact, the doctor only agreed to treat me and admit me once my gastros office yelled at her for saying I should just be sent home. I had seen this ER doctor one other time for a mast cell reaction. She didn’t understand it or want to call my doctor so told me I was over reacting. #RareDiseaseStruggle

Finally, I was admitted, as I said. However, no one had much direction on what to do other than offer me food and some encouragement to try to eat. If I had energy it would have been tempting to yell at someone because if all I needed to do was try some food I wouldn’t need to stay in the hospital! They ran basic labs, a stool test, ultra sound, and part of a colonoscopy. They yielded results but nothing that gave them direction for treatment. My body was starving when I was admitted and left. I had half a dozen stones, low blood sugar, a broken cyst, and low vitamin levels. I slept in the beginning about 20 plus hours a day. In perspective I never nap.

This was by far the most frustrating hospital admission I ever had. While waiting for my scope I turned on worship music and just cried from the pain. I had to try to think ahead as most times it took about an hour if I needed anything.  When I got to my hospital room I struggled flushing the toilet from being weak.

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Finally I could get in a few bites of soup. So they allowed me to go home because no one was sure what else to do.

So why can’t I eat suddenly? Well, I have of course a well thought out theory. I believe I either got food poisoning or a virus. Due to this I was unable to keep my steroids in so I encountered a mild adrenaline crisis. Additionally, mild flare up of UC, EDS, POTS, and Lupus. To top it all off I have my suspicions that some sort of a mild motility disorder is going on as an overlapping illness with the EDS, Mast cell, and POTS trio.

My days currently are spent with my pets as I try to finish my bachelors degree. I attempt to stimulate appetite and eat extremely small meals. So far I am down about 18 pounds. Outside of that it is mainly resting. There’s not much you want to do when always running on empty.

My goal is to get back in all my meds and supplements because they have been life changing for me. No I have not acquired a magic pill but just another tool to add to my tool box. I follow up with my PCP this week and will be discussing the possibility of a UTI. Furthermore, bring up once again the fact that I am in pain when I eat still. I will see someone who works with my gastro and see if we make any progress. At this time, my doctors are against TPN. However, soon I am getting a PICC line Finally placed for my fluids.

I have 100% seen improvement just to be clear but improvement doesn’t mean I never have set backs. Everyone with an illness has ups and downs. I know in my heart this could have been much worse than it was. I will be working on getting out info on the elements of my plan that help me so much. Additionally keep an eye out soon for a transitioning home from the hospital post.

For when I am weak the Lord is my strength. My provider. My everything. Praise Him in every storm. I am beyond thankful for those He has placed in my life as support. He embraces me when things feel like a nightmare and provide comfort. He has chosen not to heal me but to hold me and I will praise His name forevermore 

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Mast Cell Activation: An Overview

Tightening in the throat that increases by the second. The grip, like no other. Strangling. Less air pushes through.  Constricting more. Will the airways close. Focus on breathing. On finding the —A wave of dizziness emerges as less air pretenses it’s self… Focus on finding the medication.

Near anaphylaxis. It has become a common occurrence although it has not yet become normal to work though. Mast Cell Activation Syndrome is one of a few new diagnosis I recently acquired.

I had hear of the disease in passing, but it was the furthest thing from my mind. When my POTS doctor asked if I had a lot of allergies I replied no thinking everyone has a list of allergies. My theory was everyone has allergies they are just unaware, which of course, is not true. Eventually, I made my way to an allergist and got conformation of my diagnosis. Mast Cell Activation Syndrome.

Defining Mast Cell Briefly

Mast cell are a vital part to our blood as they assist in the function of the immune system. They are found in many locations throughout the body. “Mast cells react to foreign bodies and injury by releasing a variety of potent chemical mediators, such as histamine, when activated. In a healthy person these chemicals will act beneficially to protect and heal the body, but in a person with MCAS these same chemicals are inappropriately triggered and released and have a negative effect on the body. ”

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Triggers

For someone with mast cell there are various triggers. Basically, anything at a given moment can trigger us. Many times I have been okay with a food or cream for months or year than react to it. Some triggers include Heat, cold or sudden temperature changes, Stress: emotional, physical, including pain, or environmental (i.e., weather changes, pollution, pollen, pet dander, etc.), exercise, fatigue, food or beverages, including alcohol, medications,  natural odors, chemical odors, perfumes and scents venom infections (viral, bacterial or fungal), and Sun. Additionally someone with mast cell can have a reaction to themselves which is the strangest concept in my option or idiopathic reactions.

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Some Symptoms

Symptoms are unique for everyone. They can be altered depending on the day or the trigger. There are many symptoms with Mast Cell.

An overview of some of the many symptoms:

  • Gastrointestinal symptoms such as nausea, vomiting, diarrhea, abdominal pain, bloating, and malabsorption
  • Low blood pressure
  • Fatigue
  • Itching, flushing, hives
  • Episodes of fainting or dizziness
  • Bone pain
  • Brain fog
  • Anxiety
  • Rapid weight gain or loss
  • Anaphylaxis
  • Chest pain and/or a racing heart
  • Anaphylaxis

Overlapping Illness

Most individuals have an overlapping illness or a few. It is common to have POTS (or Hyper POTS) and Ehlers–Danlos syndrome. Additionally, some of these individuals have an autoimmune disease.

Treatment

Treating mast cell of course comes with challenges. The biggest challenge is that many people have a lot of medication allergies. One of the goals is to calm down the mast cells. Additionally there needs to be a plan when one reacts. Some people have continuous symptoms such as pain. Than they also deal with a massive amount of sever symptoms when encountering a trigger. Due to this there are various elements of the treatment plan.  Almost all people start on two over the counter medications Zyrtec and Xanax. These medications should calm cells. Moreover, other over the counter and/ or prescriptions are used to treat it.

Getting Educated and Finding Support

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Photo by Sharon McCutcheon on Pexels.com

Like previously mentioned there are times we encounter a trigger which can result in some symptoms like itching or nausea to life threading symptoms such as Anaplhyaxis. Again treatments vary. Some use benadryl or an Epi Pen or both.

If you or a loved one have mast cell or suspected mast cell please educate yourself as much as possible because it can (and most likely will) save your life. Be sure to connect with others with this illness. Personally, I am a huge fan of Facebook support groups and there are some fabulous ones for Mast Cell. My favorite Mast Cell Facebook Support Group can be found here Mast Cell Activation Syndrome Support (MCAS only). This group has the best resources I have found to date. It also makes it easy to get educated and find support.

Need some extra information? Check out these wonderful resources: 

  • Mast Cell Research: http://mastcellresearch.com/
  • The Mastocytosis Society https://tmsforacure.org/
  • Mast Cell Activation Syndrome: The Immune System Gone Wrong https://www.drlam.com/blog/mast-cell-activation-syndrome-the-immune-system-gone-wrong/32795/
  • Mast Cell Activation Disorder | Diagnosis Discussionhttps://www.youtube.com/watch?v=iYje4mmh5mk

    Living with EDS: Mast Cell Activation Syndrome

    https://www.youtube.com/watch?v=qv40McIWocU

 

 

What are your tips for living with Mast Cell?

*Please note this is a very brief overview of this disease. Many medical professionals are not fully educated. Please subscribe to be notified when the next mast cell post comes out.

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

Dogs!

This took much longer than I expected to write. Many people on the Chronically Hopeful Facebook page were interested when a service dog post went up about a month ago. Please understand that I have done research to the best to my ability. This is just a general overview. There will be additional service dog posts in the next few months.

There is a substantial difference between a service dog and a pet dog in the eyes of the law and social norms. Let’s begin with the basics. A service dog is for an individual with a physical disability.  These dogs are allowed to go anywhere and everywhere their human goes.Assistance Dogs International elaborates on this, “Service Dogs assist people with disabilities other than vision or hearing impairment. With special training, these dogs can help mitigate many different types of disabilities. They can be trained to work with people who use power or manual wheelchairs, have balance issues, have various types of autism, need seizure alert or response, need to be alerted to other medical issues like low blood sugar, or have psychiatric disabilities. These specially trained dogs can help by retrieving objects that are out of their person’s reach, opening and closing doors, turning light switches off and on, barking to indicate that help is needed, finding another person and leading the person to the handler, assisting ambulatory persons to walk by providing balance and counterbalance, providing deep pressure, and many other individual tasks as needed by a person with a disability.” There are many tasks a service dog can be trained to do. Additionally, service dogs can be paired with humans for autism and hearing.

Your pet dog is not allowed to accompany you in public without a specific reason. Many view a service dog as medical assistance or even medical equipment.

Service Dog Central provides some clarification on the differences between psychiatric service dogs and therapy dogs. “A therapy dog is an individual’s pet which has been trained, tested, registered and insured to work in a hospital, nursing home, school, or other institutional settings. The therapy dog and his partner visit to cheer patients, to educate the community, to counter grief and stress, and generally be good canine ambassadors within the community. Most therapy dog partners are volunteers, but some states recognize professional therapy dogs partnered with therapists and other mental health professionals.”

Psychiatric Service Dogs are generally for people with a mental impairment (these words are chosen to line up with the laws that are in place). A mental impairment in the case would include mental retardation, organic brain syndrome, emotional or mental illness, and specific learning disabilities. Anxiety, depression, and PTSD would fit under emotional/mental illness. They can be granted access in public places.

A partial listing of therapy dog organizations:
The Delta Society http://deltasociety.org
Therapy Dogs International http://tdi-dog.org
Therapy Dogs Incorporated http://therapydogs.com

On the other hand, emotional support dogs have very limited public access.

On the other hand, emotional support dogs have very limited public access. Emotional support animals provide compassion, support, and friendship to his or her owner. These animals have an irreplaceable role in their human life. Not only do these animals assist their humans emotionally but also improve physical health. Many studies support that animals lower cholesterol, lower blood pressure, lower triglyceride, reduced stress levels, reduced feelings of loneliness, and increased activity. Currently, my cats are emotional support animals. I have a special bond with each. Furthermore, they can sense when I am going to pass out, fall, or shake. Even so, they are not allowed in public. I wouldn’t bring them out in public either because that would provoke anxiety.

A multitude of agencies is out there. My first recommendation is to speak with your vet if you have one. Each agency is different. However, most share that the waiting list is long. Comparing agencies is vital. Furthermore, get as much information as possible on each one. Due to this reason, some people also find training agencies. Either your current pet dog (if he or she is qualified) or adopting a dog than the trained works with you both.

Some additional agencies include but are not limited to:

NEADS

NEADS (National Education for Assistance Dog Services, also known as Dogs for Deaf and Disabled Americans), is a non-profit organization and is based in Princeton, Massachusetts. Our Service Dogs become an extension of their handlers and bring freedom, physical autonomy, and relief from social isolation to their human partners who are deaf or have a disability.

Accredited by Assistance Dogs International, the internationally recognized governing body that establishes industry standards and practices, NEADS offers a wide spectrum of Assistance Dog services, including: Deaf & Hearing Loss, Combat Veterans, Physical Disability Classroom, Therapy & Ministry, Children with a Disability Children on the Autism Spectrum, Deaf & Hearing Loss, Veterans, Physical Disability and more.

Assistance Dog’s International can help you find a program closer to you. They have a variety of resources.

Service Dog Trainers A list of trainers across America.

I hope this information is helpful. Please share your pet’s name in the comments!

 

Dysautonomia Awareness

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October is slipping by fairly quickly because of school and pyelonephritis. I truly wish I had more time to devote to  Dysautonomia awareness month. Millions of people are affected by  Dysautonomia worldwide. Sadly, like with many illnesses, there is not enough research or enough treatment plans. “Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about.” In addition, I strongly encourage you to take a look at this video from the Dysautonomia foundation.

POTS Awareness Video

The beginning of my POTS symptoms is unclear. I had adapted to my peculiar symptoms. Then I landed in the cardiac unit from an allergic reaction to Reclast about two years ago. My nurse had woke me up a handful of times because of tachycardia. Then I overheard some medical professionals discussing my case and mentioned that I might have POTS. Of course, I did the tilt table a few weeks later with extremely positive results.

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POTS impacts my life daily. Some daily symptoms include Tachycardia , low blood pressure, dizzy spells, not absorbing things properly, brain fog, fatigue, and dehydration. In addition, I collapse, shake, and pass out. Currently, my treatment plan isn’t excellent. My doctor refuses to order saline. My only POTS specific medication is tachycardia medication. I do not have additional treatment options at this point in time due to my overlapping illnesses and treatment plan overall.

Accommodating myself is a challenge, to say the least. Hydration is a struggle, especially due to the fact that I cannot absorb fluids properly at times with Ulcerative Colitis.  Gatorade, water, tea, and drip drop are some ways I attempt to fight dehydration at home. At times, my cats can sense when I am going to pass out or have a POTS flare. In addition, I do minor diet modifications. Compression stockings are a must, though I wish they helped a bit more. Whenever I go food shopping I use a wheelchair.  If I am on my feet I clench the muscles in my legs and back to assist blood flow. I never lock my legs. I elevate my legs frequently as well.

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Education of POTS is lacking majorly in the medical field. I recently came a crossed a doctor that believed that POTS is purely a psychiatric disorder. Needless to say, I was irritated with the conversation. POTS is a health condition. It is complex. There are no cookie cutter patients. New research suggests that it might be an autoimmune disorder.

The Foundation page has some excellent resources for living with POTS. I hope you learned something from this post! If you live with Dysautonomia share what type and how it impacts your life in the comments. Lastly, if you aren’t in a support group find one. There are a wealth of in-person as well as online support groups.

College Chatter #Liberty

Stability. It is something most people crave. A schedule to glide through day after day it might sound boring yet there is comfort in the familiar. When one has stability he or she can  plan to do things.

This is one of those things you don’t realize how comforting it was until it vanished. Stability takes on different meanings for a healthy person compared to someone who is chronically ill. Stability is one thing I currently do not have enough of.

This past May I was able to complete my Associates Degree at my local community college. I had been the first student to complete a degree online. By the way, if a school does not have an established online program I do not recommend going that route. By God’s amazing grace, I was able to thrive, however, there were times of extreme frustration that could have been easily avoided.

I had been hoping that my health would be more stable than it is currently. I am still struggling with abnormal POTS symptoms such as tremors, collapsing, and slurred speech. And of course, battling my immune system.

I am beyond thrilled to be continuing my education through Liberty University’s Online Program. There is a wealth of resources such as touring and an online library . The online program is split into different terms in each semester. There are eight weeks of two or three classes than eight weeks of a different set of classes. I am entering into week two of developmental psychology and contemporary worldviews.

In addition, to the stellar academic program and access to online chapel Liberty also offers an online hangout for online students to interact with one another. It is meant to be a cafe type setting. It  might not be ideal, but I will take what I can get at this point, which I am sure any spoonie would understand, as many feel like they are starving for social interaction.

As a new academic school year arises, I want to remind you, there is hope for every student, there is hope for everyone, even you. “People do their best making plans for their lives, but the Eternal guides each step.” Proverbs 16:9 The Voice In general, we are more capable than we give ourselves credit for. A little encouragement goes a lot farther than imagined and baby steps are actually giant leaps.