Gastroparesis Awareness Month

I can’t believe how long it has been since I have posted a blog post! But I am here now!

Happy first day of August everyone! For those of you who do not know, August is also Gastroparesis and Digestive Tract Paralysis awareness month. As such, I thought that I might take a little time in my blog to talk more about gastroparesis.

As I have mentioned in previous posts, along with many other illness, I am living with gastroparesis.

So what is gastroparesis?

In order for our bodies to move food through our systems, we rely on the involuntary muscle contractions of our digestive tracts, or peristalsis. Gastroparesis, in turn, is the complete or partial paralysis of the stomach, hindering peristalsis. Without having this ability to move food and liquid throughout my digestive tract, it simply just sits in my stomach. In my experience, gastroparesis is a HIGHLY variable condition. Some people I know are almost completely normal in their ability to eat, with occasional flaring. Other people, like myself, seem to have constant issues.

How do you get gastroparesis? 

Within our nervous systems we have, obviously, a bunch of different nerves. A nerve of particular importance is the vagus nerve. The vagus nerve runs from the brain stem straight down to the abdomen, and plays a vital rule in regulation of all involuntary functions in its path. E.g., Heart rate, breathing, blood pressure, digestion, etc. Damage or dysfunction of this nerve is ultimately what causes gastroparesis (and as an aside, also what causes dysautonomia). In some cases the cause of damage or dysfunction is obvious – injury, diabeties, infection, medication etc. In other cases it isn’t quite so clear. In these cases, it is said to be idiopathic – basically of unknown origins. In my case, my gastroparesis is related to my dysautonomia. Both are caused by damage or dysfunction of my vagus nerve, which is considered to be idiopathic, but believe to be due to severe infection prior to developing dysautonomia.

What are the symptoms of Gastroparesis? 

This is another thing that is highly variable from one person to another. Some people can be relatively asymptomatic, while others suffer on a minutely basis. Symptoms can also range from mild to severe. But as a general rule, below are some signs and symptoms of gastroparesis:

  • Nausea and/vomiting
    • vomiting undigested food after many hours
  • Feeling full after eating just a few bites of food
  • Acid reflux
  • Bloating
  • Abdominal pain
  • Lack of appetite
  • Weight loss or gain (yes I said gain)
  • Malnutrition and dehydration

How is Gastroparesis Diagnosed? 

Ultimately the gold standard in diagnosing gastroparesis is a gastric emptying study (GES). Creative naming I now. But it is exactly what it sounds like. You are fed food (with radioactive tracer in it). Ever so often pictures are taken to map where, if anywhere, the food has moved. The goal here is to see how long it takes food to leave your stomach, and how much food is left after so many hours (generally 4). As you can imagine, this test is often very long, and boring. It can also be quite uncomfortable for someone with a slow digestive tract.

In addition to a GES, there are often many other tests that a person with gastroparesis might undergo before getting a formal diagnosis:

  • Endoscopy
  • Colonoscopy
  • Ultrasound
  • CT Scan/MRI
  • Manometry
    • measures the muscular contractions in various parts of the digestive tract
  • Blood Tests
  • Small Bowel Follow Through
    • special x-ray using barium
  • Electrogastrogram
    • looks at the electrical impulses to the stomach

How is Gastroparesis Treated? 

  • Life-style Changes
    • Diet: There are many lines of treatment for gastroparesis. For some it can be as simple as changing your diet to a more gastroparesis friendly diet.
      • Small, frequent meals
      • Low fiber/low fat
      • Soft or liquid meals
    • Exercise: Is this the answer to everything?!
  • Medications
    • Pro-motility: Reglan, Erythromycin, bethanechol, mestinon, domperidon
    • Nausea: Zofran, Phenergan, Emend, Sancuso, Arivan, Compazine, etc.
  • Supplemental Nutrition
    • Tube feedings: There are so many different types of feeding tubes it isn’t even funny. So I will briefly outline the different types of feeding tubes. I now have separate G and J tubes, which will be outlined below.
      • NG Tube: An NG tube is a nasogastric tube. A nasogastric tube is a thing, flexible tube that runs through your nose, down your esophagus and in to your stomach. It bypasses the esophagus. This is the first tube that I ever had. Which, not surprisingly, did not work.
      • NJ Tube: An NJ tube is a nasojejunal tube. It is similar in many ways to the NG tube, but it runs through a patients nose, down their esophagus, through their stomach, and in to the second part of the small intestines (the jejunum). This tube bypasses the esophagus and stomach.
      • G Tube: A g tube is also known as a gastrostomy tube. It is a surgically or endoscopically inserted tube that goes through the abdominal wall, directly into the stomach. It can be used to feed a patient directly in to their stomach. In cases of patients with gastroparesis, it is often used to “vent” the stomach. Basically, to empty the stomach of contents, or air.
      • J Tube: A J tube is also known as a jejunostomy tube. Like the G tube, it is inserted via surgery or endoscopy, through the abdominal wall. However, a J tube goes directly in to a persons jejunum, completely bypassing the stomach, and feeding directly into the intestines.
      • GJ Tube:  As I mentioned above, I have seperate G and J tubes, thus I have 2 seperate holes in my abdomen. In many cases, a patient can have access to their stomach and their jejunum without having to have 2 seperate tubes. This is where a GJ, or gastro-jejunal, tube comes in to play. A single hole is made in the abdominal wall, and a tube is inserted into the stomach, just like a j tube. In addition to this, a tube similar to a NJ tube is threaded through the stomach, in to the jejunum. This allows patients to feed in to their intestines and vent their stomach without having to have 2 separate stomas. This is favorable in many situations to having 2 separate tubes. It has a lower risk of infection when you have 1 stoma, as opposed to 2. Additionally, the intestines are a dirty place, and thus having a direct j tube in itself has a higher chance of infection. Unfortunately, I wouldn’t be me if I didn’t complicate things, so I was unable to have a GJ tube. This wasn’t from lack of trying, but due to awkward anatomy, as well as a volvulusing (is that even a word?) stomach, having a GJ was not a possibility for me.
    • TPN: As many of you many know from my previous posts TPN is Total Parenteral Nutrition, or IV nutrition. It was the bane of my existence for a very long time. While great at keeping people alive, TPN can be VERY dangerous and lead to serious complications, like severe infections, liver disease, etc.
  • Surgical
    • Botox: This is, from my understanding, a precursor to pyloroplasty. Basically botox is injected in to the bottom of the stomach (pylorus). If it works, then pyloroplasty would be the next step, as botox injections are only temporary. Statistically not a lot of evidence for its efficacy – in fact my GI stopped providing botox for gastroparesis patients because there wasn’t evidence that it was helping.
    • Pyloroplasty: Widening the opening at the bottom of the stomach so that food and drink can empty out of it easily.
    • Gastric Pacemaker: this is HIGHLY experimental and difficult to get approval for. I wasn’t even a candidate for it. But it is exactly what it sounds like, implanting a pacemaker, but for the stomach. The stats for it are hit or miss, but I have seen some pretty impressive improvements in people with a gastric pacemaker. Unfortunately, those that it does help, it doesn’t seem to be a permanent solution, as the body seems to adjust to it.

Complications of Gastroparesis?

Gastroparesis in itself can cause a whole host of issues:

  • Dehydration from lack of proper hydration, as well as from constant vomiting.
  • Malnutrition from poor appetite, vomiting, or inability to absorb enough nutrients.
  • Undigested food that remains in the stomach can actually harden into a solid mass, or a bezoar. Bezoars can be life threatening.
  • Food that remains in your stomach can also lead to the overgrowth of bacteria
  • Blood sugar instability
  • Anxiety, depression, and overall poor quality of life.

Not to mention, the medications and other treatments themselves can cause their own set of issues. Infections can arise from feedings tubes, as well as central lines used for hydration or nutrition.

So in short – gastroparesis is a relatively unknown, complex, chronic, potentially life-threatening condition for which there are only treatments no cures. More awareness needs to be raised to educate people on this devastating condition. More research needs to be done to find more effective treatments. Please take your time to educate yourself and others more on this condition. If you have any questions, please feel free to comment – I will answer what I can.

Lots of love.

Megan

How to communicate with physicians!

Hello everyone! I hope you are all doing well! Today’s blog entry is going to take a bit of a different path than what is usual for me.

I have been fortunate enough to be blessed with an amazing team of caring physicians and nurses. This has not always been the case. I have been fighting this battle for 6 years and like pretty much every chronic illness patient I have ever know, I have been through my share of physicians and nurses who have been judgmental, confrontational, unprofessional, and have treated me poorly. Given my experience and history, I am often asked (and have recently been asked by a good friend/newly diagnosed spoonie) how to talk with doctors and other caregivers.

I think what is incredibly important to note here is that while doctors go through extensive schooling, training, and education, they are people too. What I would also like to stress to physicians, is that patients are also people – not numbers.

Unfortunately we live in a managed care society where physicians are often times urged to focus on quantity rather than quality of care. Surely everyone here has also heard about the “study” that suggests that physicians only listen to their patients for 10-15 seconds of their visit (I’m not 100% of the exact time). I am going to be honest, I do not know how factual these figures are, but I can say that no matter where you go physicians will be under a tremendous amount of stress to balance seeing a large number of patients with providing quality care to their patients. Yay for insurance companies ruling patient care… My repose to this issue is as follows: if encounter a physician that only gives you 15 seconds to talk about what you need to talk about, or a physician who is constantly interrupting you, I would encourage you to try and find a new physician. A large part of communicating with your physicians is having a physician that you have a good rapport with; that is to say someone you trust, respect/respects you, and have a good connection and relationship with. If you don’t feel like you can express how you are feeling and your concerns to your physician, getting the help you need and deserve will be exponentially harder.

So, once you’ve found a physician/physicians who you have a good relationship with, how do you communicate with them? Here are my tips for communicating with your health care team:

  • Write down any questions and concerns you might have. Many of us have poor memory, so writing down questions is paramount.
    • If there are a lot (which is often the case with chronic illness), prioritize your questions and concerns from most to least important.
    • If there are any questions and concerns that you are unable to address during your appointment, physicians often have an e-mail system open for communications with other physicians and their patients. Never hesitate to e-mail your physician or call and leave them a message.
    • If your questions and concerns are not fully addressed, do not hesitate to ask for another appointment.
    • I am also finding an increasing number of health care providers providing their patients with their personal numbers. While this is always an option to communicate with your nurses and physicians, I often reserve this method of communication for absolute emergencies. This is my personal preference because I recognize that they have professional and personal responsibilities outside of me.
    • As stated, many chronic illness patients have brain fog, confusion, and just general crappy memory, so take notes regarding the appointment, answers to questions, etc. If this is not something you want to do, some physicians may even allow you to record audio of your visit.
  • Educate yourself on your condition(s), test(s)/blood results, and keep track of your symptoms between appointments.
    • Knowing about your health, medications, and how it effects you between your appointments is an important thing for you keep track of. This allows you to paint a better picture for your doctor about your overall health. Additionally, a lot of chronic illness patients have conditions that many of their physicians have little to no experience with. Being able to explain your condition to physicians not only gives them a better sense of your health, but it also provides you with the opportunity to educate them on something new.
    • Many physicians offices have all of their records on an online system that is accessible by patients. If this is the case with your physicians office, I encourage you to sign up for this and take advantage of access to your health care records.
    • Keep detailed logs of symptoms, medication side effects, etc., between visits. For example, I keep track of my symptoms (and any activities that lead up to them), my oral intake (though limited, this allows us to see if my oral intake is increasing or not which ultimately allows us to see if the medications are working or not), etc.
  • Advocate for yourself/bring someone with you to advocate for you
    • Never be afraid to ask questions about your health, ask for clarification of your disease(s) and treatment(s), and ask for explanations about your disease(s) and treatment(s). It is important that you know about your health, any treatments you are undergoing, and why.
    • As mentioned, physicians are people too. They are also people under a tremendous amount of stress. As such, sometimes they will sometimes get off topic from your main concern. If this happens do not be afraid to steer the conversation back in the direction you want it to go. If you are unable to get the physician back on track, just hand them your list of questions and concerns. Or as I put it to my close friend/newly diagnosed spoonie “Make a list of things you want to tell Dr… That way you don’t forget if you get overwhelmed. If nothing else you can just shove it in their face.”
    • Don’t be an ass, but also do not be afraid to stand up for yourself. This is your health after all. If the physicians are doing something you are confused or concerned about, or simply do not agree with, then tell them.
    • When in doubt, bring someone with you. If you can’t advocate for yourself (anxiety, stress, etc.) then bring someone with you who is able to keep track of any questions and concerns you have, but can also advocate for you if the need arises.
  • Communicate between visits. Though we talked about this above, I felt it was important to make it its own little section. If your physicians participate in some sort of e-mailing system that allows patients to email with their physicians, I would HIGHLY encourage using it!
    • All of my physicians are part of a larger group of physicians. They participate in an online system that allows for communication between other physicians in the group, between physicians and patients, and allows patients access to their chart. This allows me to email my physicians with any questions, concerns, or updates between visits.
    • If you have multiple, complex health issues many physician groups have case management services. If your physicians office has case management, asking for a case manager could provide you with a invaluable, integral team member. I have a nurse case manager through my PCP’s office. Instead of e-mailing or calling my physicians directly, in many cases I will communicate with her. She is probably the most vital member of my team. She manages my care (obviously), and communicates between all of my physicians (including any physicians I have that are not within their group). She keeps tabs on me in between visits, and honestly just reminds my physicians of what we are doing or have already done. Though in all honesty, I am unfortunately one of those patients that sticks out among the thousands of other patients physicians see.

 

I hope that this post was helpful. It is something I have been asked many times, particularly by newly diagnosed spoonies, and I felt it was important to get out there. Though I’m sure there are thousands of other sites out there that convey the same message.

 

What a week! (graphic images follow)

Please be forewarned there are graphic picture of a J tube infection in the following post.

Man has it been an exhausting past 10 days!

Last Friday I contacted my Nurse Case Manager because I suspected I was getting an infection around my J tube. The site itself looked okay, a bit more swollen and red compared to usual but looked okay. It felt, however, like I was being burned from the inside out. In addition to that, there was a small amount of pus, and several lumps forming around my stoma. So my Case Manager contacted my GI. He suspected I had cellulitis around my tube, so he wrote for a prescription of a topical antibiotic and said he would try to get me in to his clinic that day. Unfortunately he was unable to.

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(Friday)

I contacted him Saturday as the infection had gotten significantly worse. There was a significant amount of pusy discharge, some bleeding, worsening pain. He instructed me to go to the ER for quick access to antibiotics. I arrived at the ER. He had contacted the PA that was tending to me, and together they formulated a plan to dose me with IV Clindamycin (I HATE CLINDA WITH A PASSION), culture my blood (because of my history of endocarditis), the wound, and send me home with a 10 day script for clindamycin.  The decision for Clinda was made due to my history of infections, and the worry that I had developed a resistant staph (MRSA), especially since I have been taking Keflex for about of a month as a post-endocarditis maintenance antibiotic.

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(Saturday)

By Sunday the pain had improved, but was still having a significant amount of pus and bloody discharge. My GI was able to examine my stoma on Sunday and was able to palpate several abscesses. At that point I think I was teetering on admission, because I was left with “feel the area occasionally, and call me immediately if the abscesses get larger.” As the day went on, I started feeling significantly better with some antibiotics in me.  I even sent a text happily to my mom expressing how the infection was getting better and I could move without pain.

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(Sunday Afternoon)

That excitement was short live. Shortly after sending her that message, I was transferring back to my wheelchair and I felt a pop of something coming through my skin. Knowing full well that couldn’t be a good thing, I looked under the gauze and the part of the tube that holds the tube inside the body was now outside of the body (the balloon). screenshot_2017-06-13-21-03-35.png

(text to mom, pardon the language – there were A LOT of F-bombs that night)

I contacted my GI again, and was sent to the ER.

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(Sunday Evening -sorry the hand is sort of in the way, was holding the tube in – but the little ball is the balloon and should have much more saline in it than it did)

I arrived at the ER and my GI had already been in contact with the physician attending to me. Who, as an aside, I had worked with a lot in EMS. She removed the broken tube from my stoma. IMG_20170604_233831 (1)

(Stoma with no tube)

My GI instructed her to insert a adult catheter into the stoma to hold it open, inflate the balloon, and send me home. He would contact me to get me set up with a new tube the next day. If she had issues, she was to call him back. She was unable to get a cath into my stoma, so she called my GI back, who then came in to try and fix the issue. I’ve said it in the past, but my GI is by far one of the most compassionate, caring physicians I have ever met. I think very highly of him. He stood by my bedside in the ER at midnight until 2 am trying to fix the tube. He was able to get a peds cath in, but the issue there was that the peds cath has no balloon, so nothing to hold the tube in. He put a guide wire in, removed the cath, and tried for a larger tube. unfortunately the guide wire came out. At this point we decided it was best to just put the peds cath in and call it a night, instead of trying to McGyver something in the middle of the night in an uncontrolled environment. Unfortunately since there was no balloon, I could not be sent home. In fact, I couldn’t even sit up, or use my abdominal muscles without risking losing the tube. They transferred me to his other hospital, and on Tuesday they were able to get a new tube back in! I was sent home Wednesday, and things have been calm since!

The hospital didn’t really have the size tube that we needed, so we settled for one that is a bit too short, but is allowing me to feed while we get the correct size in. There is a lot of risk to this, but we plan on switching it out the end of this week or next week. The risk involved here is that the stoma is new again, so we risk loosing the stoma while trying to change it out. But the risk of leaving this in until the stoma matures, comes with a risk of infection.  Having a history of endocarditis, makes it so that pretty much everything becomes a risk factor for developing endocarditis again. As such, the risk of losing the stoma is much less than the risk of infection. So, here’s hoping for a smooth change!

And that brings us to today! In the 95 degree weather, I had to go out and have my Echo done to check for any lasting damage done by the infection in my heart. Thankfully the cardiologist said he doesn’t think that there will be any, but until I know for certain I will remain anxious! I will update more once I know more about how the test looks!

 

Lots of love,

Megan

Where have I been?

Where have I been? How do I even begin to answer that question?

Let’s go back to March 10th, 2017. I woke up feeling a bit off. Not sick, just off. I lied in bed for a while. After spending some more time feeling off I decided to go take a shower, and then went back to bed to take a nap. A few hours later I woke up to a horrible feeling. The feeling like my heart was running off of jet fuel, going a million miles an hour. I checked my heart rate using my fitbit, but my fitbit was reading normally. Something still didn’t feel right. So I checked it manually and my heart rate was in the 160s. I had been there before, so I checked my temperature, which was 101. I knew what it was.  I knew I had bacteria in my blood again. But I was in denial. I waited a bit longer and texted my mom. I told her I wanted to wait a bit longer to make sure it wasn’t the flu, she convinced me otherwise. I called my fantastic case manager, who was audible upset and worried about me, and informed me to go to the hospital. I’ll spare you all the details, and stick with the important facts. When arrival at the ER my blood pressure was dangerously low, and my heart rate was irregular and dangerously high. It was decided that medical intervention needed to be taken to slow my heart rate down. I was given one dose of a medication known as adenosine. For those of you who are unfamiliar with this drug, it’s entire purpose is to stop and restart your heart (hopefully restarting it at a safer more appropriate rhythm and rate).  The next 10 minutes were the 10 most terrifying moments of my life, by far. The first dose was given, but did not bring my heart rate down. In fact increased it to 180s. The doctor asked the nurse to bring another dose in, and a crash cart. I asked him if I should be worried, but he informed me it was just protocol. The second dose was given, and I felt my heart rate drop, however, within 5 seconds it was back to 170s. I don’t remember much of what happened before or after that to be honest, but eventually they were able to control my heart rate with other meds.

So lets fast forward: As expected my blood cultures were positive. I was diagnosed with my 3rd episode of sepsis  (basically a life threatening immune response to severe infections) caused by bacteremia (bacteria in the blood), and sent for a routine echocardiogram (ultrasound of the heart), to make sure the bacteria wasn’t growing in my heart. Which leads us to the second most terrifying moment of my life. The moment the hospitalist walked into my room and told me due to the TPN, my central line, and repeated episodes of bacteremia that I had a vegetation of bacteria growing on the tricuspid valve of my heart. I had endocarditis (an infection of the inside part of the heart, that can be fatal). I was sent from my smaller, local hospital, to a bigger more specialized hospital for evaluation for a valve repair or replacement.

Now lets talk about how the worst week of my life, turned into the best week of my life. Things were difficult for me initially at the bigger hospital. I was treated like I was crazy because no one knew about my diagnosis. In fact, despite the fact that in total I have lost approximately 100lbs in a year (the first 4 months I lost 70 of it), I was told I was too fat to be TPN dependent and clearly I was eating on my own. Normally, I can deal with that crap, but I was in a bad place mentally, and couldn’t deal with it. Thankfully though, I had an amazing team of physicians at home advocating for me, and despite still being treated terribly by the physicians at the hospital, I was given a nasal jejunal tube (which we had been planning on putting in that week anyway after I had asked my GI if we could give it a shot), which I was amazingly able to tolerate feedings through. After a lengthy stay, and a lot of mental and physical strength, I was finally sent home OFF OF TPN. OFF OF THE STUFF THAT FOR 7 MONTHS KEPT ME ALIVE, WHILE SIMULTANEOUSLY TRYING TO KILL ME. I wont bore you with the details of the recovery. To be honest, here we are 3 months later and I still feel like I’m recovering. I’m more exhausted, have less strength, etc. I have a new echo on Tuesday to see if there is lasting damage. For 7 months, I had no hopes, no dreams, no aspirations. For 7 months, I was waiting to die. Now I am dreaming again. Hoping. Waiting to get back to school, and go to medical school. I am alive. But here is the ultimate “side effect” of the endocarditis: I am happier than I have ever been. I am more grateful for life, and everyone around me. Don’t get me wrong, everyday is a battle, but it’s a battle that I am fortunate enough to be around to fight. I am also lucky enough to have some amazing people fighting my battles by my side.

For now I will leave it at that. I have hundreds of other things to say and update on. But I cannot gather my thoughts enough to put everything thats in my mind into words.

 

Update

Hello lovelies.

I apologize it’s been a while since I’ve posted. I’ve been so tired.

Here is what has been going on. As many of you know from my previous posts, I am completely dependent on TPN to get my nutrition and hydration. I have been dependent on it since September 2016. It has been hell to be quite frank. I’m grateful for it, as it has kept me alive this long. But honestly, TPN is more life prolonging than it is life saving. We’ve tried many things to get me off of it, but so far nothing has stuck. As you can imagine, with no food going in, no iron is going in. So I’ve been quite iron deficient anemic. Since January this has been causing my hemoglobin (the cells that carry oxygen throughout the blood) to drop. My physicians office considers 12 to be normal, mine is currently in the 8’s (was in the 9s last week). This has cased me to be extremely tired, and thus not updating and posting as much. Monday we are repeating this lab, and getting more in-depth iron labs. Hopefully the labs are not too terribly low, as I am also scheduled on Tuesday to get a PEGJ. For those of you who do not know, this is a type of feeding tube that goes to both the stomach and the small intestines. I have had gastric feeding tubes in the past and have failed miserably. We skipped straight from a NG tube to TPN due to rapid weight loss, severe malnutrition, repeated bouts of severe dehydration (despite home IV hydration), and the fact that my intestines are also at least partially paralyzed. Though my physicians are not hopeful that I will be able to feed into my intestines we are still going to try feeds, because lets be honest anything is better than TPN. Even if I am unable to feed into my intestines, I will hopefully be able to take my oral meds that help control my POTS (and hopefully retry some motility meds).

Thanks for reading.

Lots of love,
Megan

 

Serious talk for a second.

Hi lovelies, thanks for stopping by!

I have been going back and fourth in my head as to whether I wanted to post this entry or not. It’s a pretty hot topic, but I think it is something that needs to be addressed.

The online (particularly Facebook) chronic illness community has become a breeding ground for hate, anger, accusations, and so fourth as of late. To be honest, this is probably something that has been going on for a while, it is only recently that it has been most apparent to me, though. Anytime you have any type of online forum, there is bound to be people who misrepresent themselves.This is the truth about the internet. Unfortunately, there are several effects of these misrepresentations. The two most prominent (for me at least) of these effects are the increase in people accusing others of faking their illnesses, and increase in anger and hatred (which sort of goes hand in hand with the last one).

Let’s pick each of these apart quickly:

Increase in accusations: This is something I have noticed in the wake of several major cases of misrepresentation. Some people within the chronic illness community are becoming so quick to accusing others of faking their illness. More often than not, this has lead to truly ill and suffering people being accused and ostracized from the communities that they joined for support. People join these communities for support, support that they aren’t necessarily getting in their everyday lives. Many people with chronic illnesses have been accused or doubted in their “real” lives time and time again. This in itself is a tragic, difficult, and frequent thing to deal with. I experienced doubt myself to a very mild degree before my diagnosis. I can only imagine how hurtful and emotionally taxing it is to have these same doubts and accusations from the very people who are suppose to support them. The people who should know how hard it is to deal with these doubts and accusations.

This, in itself, causes an increase in anger and hatred. Anger towards one another, anger towards those who are accusing people of faking, and anger towards those who are defending the accused. Anger in a community that is meant to be about love and support.

Thanks for reading,
lots of love (and love one another)

Megan

 

 

Quick entry, Not done blogging

 

I just wanted to quickly post this entry saying that I am not done with blogging now that the 30 day challenge is over. I was a bit worried that I would have no inspiration now that the 30 days is over, but I will keep pushing forward. Tomorrow I intend to post an entry. I simply do not have the energy (spoons) to do that tonight. All that being said, if anyone has any specific topics or questions they want me to address, please feel free to comment and let me know.

Stay tune.
lots of love

Megan

 

Day 30: How is your body affected? What do I like about my body?

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Starting with your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that body part

Hello lovelies. Thanks for stopping by again. Please be aware that there is some basic (not detailed) TMI information to follow.

Toes/Feet/Ankle

Affected: Weakness, soreness, additional foot and ankle problems (related to clubfoot, not chronic illness), wheelchair bound, numbness and tingling, poor circulation

Like: Do tattoos count?

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I also have quite small feet, which I appreciate. It makes shopping for shoes very easy and much cheaper than if I had bigger feet lol.

Legs/Knees

Affected: Weakness, soreness, wheelchair bound

Like: Again, do tattoos count? lol. The tattoo on my leg isn’t the best quality. It was the first tattoo I ever had, and I didn’t search around for a good artist at the time. It was a very impulsive decision. I don’t regret the decision, because the tattoo has deep meaning to me, but I do regret not doing research and putting more thought and time into it. Thankfully I have found a very talented artist to do the remainder of my tattoos, and who will touch up the one on my leg when I am able to do so.

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I also strangely like my legs. I was born with clubfoot and thus have had 5 surgeries on my right foot and ankle. Starting as early as 1 year old. In my right leg, I have developed very little muscle. My left leg had to compensate for this (when I walked), and is thus quite muscular.

Hips/Pelvis/Reproductive organs

Affected: soreness, weakness, oligomenorrhea

Like: Hmm, how un-symptomatic these parts of my body are compared to the rest of my body? lol

Abdomen/stomach

Affected: bloating, bowel irregularities, gastrointestinal paralysis, malabsorption, inability to eat, severe malnutrition, rapid weight loss, TPN dependent, lack of sensation of full bladder

Like: Right now, in all honestly, I don’t like too terribly much right now about my abdomen and stomach.

Ribs/Lungs/heart, etc.

Affected: Tachycardia (racing heart), low blood pressure, shortness of breath, central line in chest

Like: I think that I have a good, compassionate heart. Does that count?

Shoulders/back

Affected: Soreness, weakness

Like: Uhhhh… I have a tattoo on my shoulder for Chronic illness/dysautonomia awareness. Again, does that count? (Tattoo compliments of the very talented Lowercasej (Justin) at King Kobra Tattoo (formally known as tattoo Marks) 10947336_10205666488489809_3164309424756544750_n.jpg

Arms/Wrists/Hands/Fingers:

Affected: Soreness, weakness, blood clots from central lines used to keep me alive, numbness and tingling, poor circulation

Like: I’ve never thought much about this. I guess I love my nails. Not because they are long and beautiful but because I love painting nails. It’s cathartic to me.

Head(and brain)/Neck:

Affected: Headaches, confusion, brain fog, dizziness, fainting, soreness, poor temperature regulation, fatigue

Like: Love my eyes, that seem to change color based on my mood. Is that even possible? I honestly have no idea what color my eyes are. They’re kinda grey, kinda blue, with hints of green and hazel in them.. And my curly hair. I used to hate my curls because they are a lot of work, but I love them now. I also believe that I am quite an intellectual person.

 

 

 

Day 29: Coping mechanisms

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What has helped you cope with the stress of this life style? 

Video Games

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(random screenshots from video games)

Friends/Family

I don’t want to post pictures of people without their knowledge, but friends and family have been my rock and have helped me through some amazingly tough stuff over the past few years.

Fur baby

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Reading

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Art

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