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.

37069872_10217130570443113_1317344401864785920_n.jpg

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 

Advertisements

Gastroparesis

In my personal option rare diseases do not get enough attention so anytime I have the spoons and time I am delighted to blog about any of them. Many doctors are not educated enough about them. Education for us all makes a huge difference.

Gastroparesis is considered a very rare disease but some argue that doctors are just not educated enough to diagnosis it. It can overlap with the trio overlapping illnesses including  Ehlers-Danlos syndromes, Postural Orthostatic Tachycardia Syndrome, and Mast Cell Activation Syndrome. For anyone who has taken note of the fact that I have the trio I do not know for a fact if I have it and do not think my doctor would identify it. Furthermore, it is too difficult to tell on steroids and I’m allergic to part of the test.

Gastroparesis2

According to the found Gastroparesis is a GI track mobility disorder. In further detail they explain:

“Normally, the stomach empties its contents in a controlled manner into the small intestines. In gastroparesis, the muscle contractions (motility) that move food along the digestive tract do not work properly and the stomach empties too slowly.

Gastroparesis is characterized by the presence of certain long-term symptoms together with delayed stomach emptying in the absence of any observable obstruction or blockage. The delayed stomach emptying is confirmed by a test.”

Symptoms vary from person to person.

  • Vomiting
  • Nausea
  • A feeling of fullness after eating just a few bites
  • Vomiting undigested food eaten a few hours earlier
  • Acid reflux
  • Abdominal bloating
  • Abdominal pain
  • Changes in blood sugar levels
  • Lack of appetite
  • Weight loss and malnutrition

 

 

I recently saw a story that is a ray of hope in a cloudy sky of chronic illness and would love to share with you to encourage you.

In 2009 I was diagnosed with severe Gastroparesis and another auto immune disease. Gastroparesis is damage to the vagus nerve which doesn’t allow your stomach to empty its food contents properly. So your food can literally sit in your stomach for days instead of hours. It’s pretty miserable. Worse, the few effective medications available to help ease the symptoms were not an option for me due to an allergic reaction to them. In severe cases like mine there is the option to get a pacemaker installed in your stomach, but as I already have a pacemaker/defibrillator I was once again left with no solution to help me. Most recently, I was rushed to the ER because of hypoxia (low oxygen) that saw me admitted to the ICU for three days. I was told that all of my medications, heart related included, had built to life threatening toxicity due to the blockage directly caused by my Gastroparesis. I was in the hospital for another 5 days and taken off all my medications to detox my entire system. I used that “blank slate” to try a vitamin system (I know it sounds crazy, right?!)  which helped greatly with both my chronic and fibro pain. I’ve found through all this that doctors prescribe medication often, because they have no other solution. We don’t think about the life we lose because of the medications prescribed to us or the life the side effects take from us because we think that it’s helping us. For me, the medications that were supposed to help me almost took my life. I needed a balance like most of us of medications and natural elements.

If you would like more info on what this lovely lady did to improve her health please comment your e-mail. (I ask people to do this so that I can respect their privacy and provide ALL the information I have on hand possible pertaining to their illness. If you have an illness I have I have additional tips I would love to share with you).

Need more info on Gastroparesis check out this video

Foundation

What does Mayo say? 

Learn more from other patients on The Mighty

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.”