Living My Best Life

I started this article as 2022 was coming to a close and I was reflecting on all that has transpired and what is presently at hand. I only now feel ready to publish it though as it has been a pretty intense 6 months of 2023 already! As I was reflecting on 2022, I had the following questions and answers and I find myself asking them again now in June of 2023.

Has this been the best year for me? No, absolutely not. Has my life changed for the better this year? Absolutely it has. This acknowledgement led me to the realization that I was and still am living my best life right now. And I'm celebrating it with immense gratitude.

As a result of my medical PTSD, I've struggled with periodic bouts of depression and intense anger with a longing for death that I've experienced since my first surgery at age 9. It didn't help in high school during one of my near-death experiences that I was overcome with the deepest sense of peace I've ever encountered. This peace has left me longing for death even more ever since. So, joy wasn't something I regularly experienced or even thought about, much less sought. To me, life has merely been a waiting period full of suffering. This isn't to say that I've lived an unhappy life. Rather, it's often a life overshadowed by fear - fears of losing my parents or other loved ones, fear of uncertainty, fear of emotional and physical pain, fear of the past repeating itself. 

2021 forced me to dedicate 2022 to focusing on my mental health, learning self-care and allowing self-growth. I started 2021 with emotional turmoil from reliving my own medical traumas while writing my own medical story and my children's book about FAP for publication. This was an intense, emotionally exhaustive and long process - much more than I had anticipated. I ended the year with my 8th abdominal surgery and new, unexplained debilitating chronic pain that would take over 6 months for a diagnosis of Abdominal Migraine. I also was diagnosed with Fibromyalgia around this time, a new diagnosis for me that I haven't even given any thought to until recently. 

I began 2022 with resuming anti-depressant medication and counseling. Shortly after, within the span of a month, two of my family members who had helped raise me, passed away. Not long after that, another family member who had helped raise me moved 2.5 hours away - she was no longer physically close to me in proximity, and it was as though I was losing her too as I was losing those that my childhood life was so firmly founded upon. I was taken back to the loss of previous family members in the early 2000's that shook me to my core. 

In 2022, I added metaphysics courses and EMDR therapy for trauma work to my CBT therapy. While life significantly improved upon appropriately managing the pain of Abdominal Migraine, the end of 2022 wasn't easy either. I started experiencing regular vomiting with the reason only just being determined in May 2023 as that of esophageal dysmotility. I lost another family member and am preparing for the loss of yet another family member. And my trauma work to process not only my past trauma but also my future fears is extremely emotionally difficult work. 

And yet, I'm at a place in my life that I can't deny is the happiest time of my life. I'm cherishing every moment with my parents. I have built a family and life with my life partner, his son and family. I've regained my quality of life after enduring a year of debilitating pain. I'm learning and practicing self-care and healing from my past trauma. I'm maintaining employment, serving in new advocacy roles for the cancer and rare disease communities and celebrated the 10th anniversary of LAP. 

In 2021, I attended my first Reiki session and was confronted by my lack of experiencing joy with a challenge to start finding joy. Through all of the hard work I'm doing for my self-care, self-healing, and self-growth - I can finally say that I do experience moments of joy now in life. And they are absolutely wonderful, and I want more of them. I want them so much so that I often am faced with moments of fear and anxiety to hold onto those moments as they're overshadowed at times by my fear of never having them again. This is becoming a lessening concern though as I am incredibly doing well maintaining self-care after a year of trial and error with how to maintain self-care practices. 

I'm also relieved and grateful to finally know the reason for my unexplained chronic vomiting after nearly a year of this issue only worsening and learning what my treatment options will be for it. It is something I've really been struggling with since July of 2022 that was only worsening and taking a heavier and heavier mental toll. With my esophageal dysmotility, I am faced with very limited options for treatment - a muscle relaxer or surgery - both of which my doctor doesn't like. Fortunately, I previously took Baclofen in 2014 following developing a bulging disc in my neck and didn't experience any side effects from the medication. My doctor agreed to allow me to trial it for my vomiting and so far, as long as I time my doses right and don't overeat, I'm able to keep food and drink down! I've decided to not pursue surgery for two reasons - not only because medication is working but also, my doctor confirmed I have another stricture around my small intestine. And as he reminded me, no one really wants to do surgery on me due to my long history of surgeries and excessive adhesions. I fully anticipate in the future it is likely that I will require surgery for the Whipple Procedure and/or to remove the adhesions creating my stricture. I'd much rather at this point, trade a surgery for esophageal dysmotility for one or both of these possibly needed surgeries in the future. There comes a point when a person becomes inoperable, and I don't want to hasten that time for myself any more than what's absolutely necessary. 

The mental toll I've been under this year has also been compounded by developing Post Concussion Syndrome following a fall in February 2023. This is a subject I will explore in a future post but do not presently feel comfortable publicly sharing the full details of what life has been like with PCS at this time except that PCS has been an extremely challenging and nightmarish experience that no one has been able to truly understand how it's affected me except for my partner, Mike. And that has also been a challenge as it has led me to feel isolated, misunderstood, and dismissed by the majority of people in my life because they don't see or grasp what it's like to have a brain injury that isn't healing at an expected or wanted rate. My brain is still healing with slow improvements, which is something I am also extremely grateful and relieved about and hope that when my brain fully heals that I won't have lifelong complications from the injury. 

It's a difficult process to accept when life changes with no guarantee or even signs of improvement to return to how life was previously. In spite of a multitude of changes occurring in the last 2 years with barely any time to adjust to one change before another arises, I can confidently say that presently I am living my best life and even though there are no cures for my conditions, I'm full of gratitude for where I'm at in my life and I eagerly anticipate a world of wonderful things to continue as time goes on. 

When You're Eager for Medical Testing

 

I don't think I've ever been so excited to undergo medical testing as I have this last year. I felt like I was literally begging for any medical test to be ran and I wouldn't even say I felt that way during the 6.5 months I spent seeing 7 specialists to ultimately diagnose my Abdominal Migraine. Sure, I was willing to do any test, but I didn't realize at the time that I needed tests to be done...I didn't have any idea of what needed to be done to determine why I was having debilitating pain that kept me bed bound for the day except for my time spent at work. But this year has been different. In fact, everything has been different ever since my gallbladder removal in August 2021 and I believe this present issue stems from that surgery as well.

My gallbladder removal exacerbated my undiagnosed Abdominal Migraine and I believe it also kickstarted something else - what exactly is yet to be determined. Let me back up and I'll give a brief timeline for understanding. 

• August 2021 - gallbladder removal, chronic debilitating pain starts following surgery. I'm started on Lyrica in December. After surgery, I begin losing about 10 pounds a month until February because I have no appetite and Mike forces me to eat one meal a day. In March, I started to gain a small amount back and then hold steady as my appetite improved a bit.
• April 2022 - diagnosed with Abdominal Migraine, Amitriptyline medication is added to the Lyrica. Sometime between April and July, I start noticing that not only do I feel full easily and quickly but I also feel like I need to vomit.
• July 2022 - I start vomiting whenever I feel too full. It literally feels like I have food all the way from my stomach to the back of my throat. If I don't vomit, I continually regurgitate it and swallow it on repeat until I lean over, open my mouth, and squeeze my stomach. This is not vomiting caused by nausea. This will begin to progress to increase in frequency and ease to the present day. My weight continues to incrementally increase again until by January 2023, I have gained back almost all of the weight I lost following my gallbladder surgery. 

This entire time, I'm keeping my GI specialist informed. I started asking for an EGD, even though I wasn't due for another one until 2023. He tests me for C. Diff, he's monitoring my labs but everything keeps coming back fairly decently. In spite of vomiting up to 3 times a day, I'm maintaining weight. Some days I don't vomit at all. Most of the time when I do vomit, it's not immediately after ingesting food or drink and I don't always eat healthy foods. So my body is still able to get enough calories and nutrients to sustain itself. We try adjusting PPI dosages and trying different PPI medications. I undergo a food test study where I eat a meal with radioactive substance that is recorded in a body machine to determine the rate my stomach empties into my small intestine - to determine if I have gastroparesis. It shows my stomach empties food faster than someone with gastroparesis. 

In December 2022, I finally undergo an EGD...but it's pretty normal, some mild gastritis but no unusual acid found, no bile seen at all, esophagus looks good, my usual polyps are found, no sign of a hiatal hernia. I ask to complete a SIBO test, just in case. It came back as suspected SIBO...but I question the accuracy because I think I may have skewed the results by doing my baseline breath sample twice because I was uncertain, I had done it correctly at first. But either way, I completed a round of two antibiotics for SIBO. Nothing changes. 

The only thing that reduces the vomiting, not eliminate it, but reduce it is not ingesting anything. However, I discovered during a partial blockage that when I don't ingest anything...my body will make me vomit bile - and that was one of the most, if not the most, awful taste I've ever experienced. 

I undergo an EGD with Bravo Test to check the PH level of my stomach acid. For 10 days before the attachment of the Bravo test capsule to my esophagus, I had to stop my PPI. This resulted in vomiting bile that tasted of pure lemon juice. At least it was better than regular bile taste. My throat becomes inflamed and irritated though from the vomiting of bile without the protection of my PPI. The Bravo test comes back with significant acid reflux and esophagitis. I'm still not sure why I needed to complete this test because I've been diagnosed with GERD since my colon removal in 1995. However, my GI assured me that it would be helpful in identifying what may be going on and what steps to take. Oddly enough though, the surgeon I went to in 2021 for a second opinion about my hiatal hernia following my gallbladder surgery recommended an EGD with Bravo Test. The reason he did, I've since forgotten because my hiatal hernia was so small at the time, he wasn't even positive I had a hernia. And I wasn't having the urge to vomit or uncontrolled acid reflux. But fast forward, and I'm going to have that test done anyway. Fine by me, just as long as we're doing something to identify the cause for my vomiting and can attempt to resolve it. 

The next test to complete is an Upper GI Series with Small Bowel Follow Through. Essentially, I drink barium contrast and images are taken as my body digests it to help evaluate for small bowel obstruction. In my experience, this hasn't been very helpful except to say yes, I do have adhesions or in the case of when my small intestine wrapped around itself. But this type of test was unable to determine there was a stricture around my small intestine from adhesions resulting in my near death from excessive vomiting and diarrhea. That was only discovered through exploratory surgery. However, I am willing to undergo this test. It is just one step closer to something else being done and a checkmark for insurance requirements for further testing. My GI wants to do this test though due to my history of a stricture around my small intestine caused by adhesions. He thinks that small bowel obstruction could be contributing to my vomiting, and it very well could be, that is what caused my vomiting in high school after my ostomy reversal. 

The following week I will undergo an Esophageal Manometry. I had a PTSD related panic attack once I looked up this test. A tube must be inserted through the nose into the stomach and then the patient swallows while the tube measures the motility of the esophagus to test for different conditions. I absolutely want to do this test but I'm terrified of being awake while this tube is placed. I think this test is necessary as I've thought all along that there is something wrong with my esophagus. Fortunately, my GI agrees to place the tube under sedation and to allow my dad to be with me during the test to help calm my trauma responses. This is scheduled for May 11. Just like the EGD in December 2022, I am 100% ready to do this test. I am excited, eager, impatient to do this test. In fact, let's do any and every test that may possibly answer why I'm vomiting so it can then be treated. 

In all reality, I anticipate I'm likely facing surgery to resolve my vomiting at some point in the future. The Esophageal Manometry can help to diagnose or rule out a few conditions, majority of which can be treated with surgery. I accepted a long time ago that I would likely have future surgeries and at this point, if surgery is what will help resolve the vomiting...I'm eager to undergo surgery too and the sooner the better. I just want to identify the source and work on a treatment plan to resolve it. 

Learning Balance

I spent 2022 learning self-care after realizing I never actually given myself self-care before. I think this maybe actually could even be considered as fawning, a trauma response. I have dedicated my life to the service of others, focusing on their mental well-being and empowering them to navigate and succeed in their own chronic illnesses. I was so focused on how to help others, professionally and personally, for the last 13 years that I never stopped to think about what I need. Prior to entering the work force, my life focused on my sheer survival since the age of 9. There wasn't time to think about self-care, my body was just trying to live to the next day and my mind was just trying not to break in the process. 

Now that I've learned self-care, I find myself experiencing great moments. But they're so great that I forget to maintain self-care resulting in a backslide. And not just a mental or emotional backslide, but also a physical one. My physical health and mental health are so closely intertwined that if I don't feel decently, tolerably well physically, my mental health plummets. It may only last a day, or it may last weeks to months. It took most of 2022 for me to finally identify the cycle and its root cause. I feel decent physically and am content emotionally, I overindulge in activity and stop focusing on self-care, I start to have increased physical symptoms, I start to get depressed and then they feed off one another. It isn't until I decrease my activity and heavily focus on my self-care again that I'm able to start to stabilize once again. And then the cycle continues.

I identified the cycle and its source early in December 2022 and then stayed in a frozen state for a few weeks, terrified to resume activity because I don't yet know how to balance my self-care and my activity without spiraling again. And so, I was left being frozen with fear and feeling overwhelmed. When trying to stop a spiral, I don't do anything beyond working as regular and I only engage in a small activity once during the weekend. There's so much that I want to do, so much that I enjoy but something must give, must change. I knew I needed to evaluate and prioritize my activities to identify a working plan to maintain self-care and prevent continued cycling. The difficulty lied in finally sitting down to do just that. 

With the continued encouragement from my counselors for a couple weeks, I finally allowed time for reflection and evaluation. I decided to maintain self-care I will:

• Stop trying to do so much because it is wearing myself thin. 
• Weekend activities will be limited to either a) one full day of activity or b) at most, 1/2 day of activity either on one weekend day or both weekend days. The rest of the weekend time I will dedicate to either resting or my rare disease advocacy depending on what I feel able to do at the time.
• I will no longer push myself to rare disease advocacy on weeknights and will only engage in advocacy efforts during these times if I feel up to it. 
• I will take at least one day off work every month for myself, even if it is only spent resting at home.
• I will continue EMDR therapy on a weekly basis and adjust my CBT counseling sessions as needed.
• I will increase my antidepressant medication when needed (This was approved by my PCP)

This plan, I believe, will help take some of the pressure that I place on myself to engage in activities/advocacy efforts on a near constant basis and instead, allow me to benefit from recovery periods for longevity. And as much as I want to do things when I'm feeling well enough to instead of setting limits on myself, I'm going to have to respect these new boundaries for my well-being. I'm going to have to accept that I won't be able to complete as many things as I normally have the past. I'm going to have to learn to stop pushing myself past my limits and to stop judging myself for not accomplishing as much as I would like in a given period. This part of self-care though - setting and respecting boundaries, being kinder and more allowing with oneself. 

As you may have noticed, I haven't been creating a lot of new content - whether articles or Youtube videos. These are both things that I will continue to do and want to do. However, the schedule will likely be sparser than what it typically has been in the past. 

I will continue to post nearly daily on LAP Facebook, regularly on Instagram and Tiktok as well. 

I'm also remaining active in the FAP Facebook Groups and One Cancer Place and completing guest articles and podcast interviews when able. I would like to start regular Twitch streams but have not yet done so. 

So, while I may appear less visible in some ways, I have no intention to stop LAP or any of my other rare disease advocacy efforts. I'm just learning how to balance it all. I will remain here and available. Our FAP and Short Bowel Syndrome communities mean the world to me. And I have big things planned for this year as ways of fundraising for the NORD FAP Research Fund so that we may finally fully fund it!

If you're struggling with balance as well, I encourage you to take a well-deserved moment to give yourself the time you deserve for self-care so that you may achieve a greater balance. 

Chronic Pain and Physical Therapy

Chronic pain – it’s been my companion in life early on. It served as an early warning system that there was something wrong with my body. It was with this chronic abdominal pain that led to discovering my Familial Adenomatous Polyposis diagnosis at age 8. It was with this that my colon was able to be removed in time to prevent my already turning cancerous polyps from exploding into cancer at age 9.

I can’t say it has served a noble purpose since then though. Instead, it’s become a minefield for me to navigate; trying to find my way to balance it and enjoying life’s activities. Throughout the years, I've required physical or occupational therapy 4 times for the management of chronic pain - back pain, neck pain, tendinitis, and nerve pain.

My first year of surgeries, I remember the chronic pain I began to experience in my back. During my hospitalizations, I required my spine to be lined with what felt like an endless row of ice packs to merely numb the pain. I remember the smell of the powder that lined the inside of the ice packs. I remember how they felt in my hands and the coldness along my bare back. I remember the agony. Perhaps, if we had realized during that year that Morphine doesn’t have any effect on my pain it would have been different. We wouldn’t realize this though until my surgeries during my high school years. The chronic back pain would have been different too if my doctors had referred me to physical therapy after my surgeries to strengthen my severed abdominal muscles so that they would be able to support my back again – thereby reducing or alleviating my back pain.

The next few years I don’t remember much, and definitely not how I physically felt. This blocking out of memories is part of my coping mechanisms with the medical PTSD I developed from that first year of surgeries. I believe I must have been healthier during my middle school years – I didn’t have any hospitalizations during that time. I wouldn't have hospitalizations again until I underwent my ileostomy reversal in 2001. This would lead to chronic pain I haven’t been able to ignore or forget since; pain that changes over the years but has remained constant.

Following my ostomy reversal, due to adhesions I began having severe abdominal pain that worsened with ingestion of food or liquid. The severity of this pain has varied over the years. For the first 6 years following my ostomy reversal, it was at its peak in severity. I remember every time we’d go to a restaurant, I’d lie down on the bench at our tables, curled up in the fetal position trying to cope with my abdominal pain. Ethnic foods caused the most pain amongst the foods I ate – but there wasn’t any food that didn’t cause pain. My body finally began to adjust to its “new plumbing” I suppose, and the pain did decrease in severity after those first 6 years. It remained at this more manageable level until 2015.

In the meantime, I would develop tendinitis in both wrists and chronic neck pain. Due to malnourishment throughout the years, I developed tendinitis in my wrists and degeneration in my neck allowing for a bulging disc to occur. I underwent a few months of occupational therapy to manage the tendinitis pain and I required 6 months of physical therapy to manage my neck pain. I continue to have chronic pain in my wrists and neck at a tolerable level majority of the time, except for sporadic flare ups.

In 2015, I was malnourished and dehydrated from depression during the height of my marital issues. As a result, my blood pressure bottomed out while at work and I fell, hitting my head on hard tile. This event would lead to a spiral of new pains over the next several years. A spiral that wouldn’t be fully understood until 2022.

Since I fell at work, I was required to be evaluated at the ER – which led to my first hospitalization since my last one in 2007. During this hospitalization my pain would once again change, and it changed overnight. The night before I was discharged, I had a headache during the middle of the night – a rare occurrence at the time. It wouldn’t stop and I was only ordered Tylenol and Morphine for pain. I don’t like taking pain medication of any kind – so much so, I forget that OTC medications such as Tylenol, Ibuprofen, Aspirin, etc. even exist. I couldn’t sleep and the headache pain wouldn’t stop, so I asked for Tylenol. That didn’t make a difference and my only option was Morphine. I didn’t anticipate the Morphine to be effective – it never has been before, and it was in the middle of the night; I didn’t see any sense to have an on-call Hospitalist be contacted for a pain medication to be ordered for a headache, especially when I was to be discharged the following day. So, I tried the Morphine and as expected, it didn’t help my headache. Instead, it caused severe constipation that would in turn cause severe abdominal pain. Along with this pain came severe nausea – something I don’t recall experiencing since having my 7^th surgery to remove adhesions following my ostomy reversal. This new, severe duo has stayed with me ever since waking up that morning following accepting the Morphine. It was like a switch had been flipped and it would take months of trial and error with medications to find the right combination for me. I relied on Bentyl and Compazine three times a day. These were the only medications to manage my pain and nausea so that I could function more easily. Without them, it was difficult to get out of bed much less participate in life. My doctors couldn’t find any other reason for the new pain and nausea other than adhesions with gallstones contributing as well. And this is how it stayed until my 8^th surgery in 2021 to remove my gallbladder and adhesions for the 3^rd time.

Magically, the first 2 weeks after my 8^th surgery, my pain and nausea ceased. I stopped requiring the Bentyl and Compazine. However, at the 2.5 week mark my pain would once again change – and change to a level I had never experienced before. The new pain reduced me to becoming bedbound outside of the time I forced myself to go to work. I lived like this for 4 months following this surgery. Test after test was completed, medication changes were made; a cause couldn’t be found, nothing helped to provide even a glimpse of relief other than lying down. Any activity, even sitting up, worsened my pain. My GI was at a loss and didn’t know what else to do than to try Lyrica. Lyrica changed my life within a couple weeks my pain started to lessen to a tolerable level, and I could start venturing out of my bed outside of work hours. During this time, I was consulting with every specialist possible. After 6.5 months, I finally had an answer and treatment plan – it was Abdominal Migraine that started from my fall in 2015 and was exacerbated by my gallbladder surgery.

Fast forward to August 2022, my pain and nausea were well managed by my Neurologist treating the Abdominal Migraine, but I still had pain that worsened by too much activity. While I was able to maintain working and participating in activities of my choice again – I risked a 3-day pain flare anytime I exerted too much activity. What was too much activity? I didn’t know, especially because the pain flares wouldn’t hit until 2 days afterwards.

But my life would once again change in respect to my chronic pain when I asked for physical therapy. Within the course of 3 months, I've started to have days with barely any pain, days that I've felt better than I had in years.

My body had become severely deconditioned during those 4 months of being bedbound and while my medications are appropriately treating my nerve pain, my muscles were too weak and contributed to my pain. I required physical therapy twice a week for 2 months to focus on strengthening each of the 6 major muscle groups to better manage my pain. My progress deteriorated too fast when I decreased to once a week even with exercising at home. I had to slowly increase my exercises, incorporating new exercises and their frequency and level of difficulty to manage the pain flares that occurred after each milestone in my therapy. There were days that were emotionally difficult for me as I would be filled with frustration and hopelessness with each “setback” in the progress I was making. There were times I would quietly cry without control during my therapy sessions during a pain flare.

Over time, I went from not being able to tolerate 2 days of activity in a row to completing 10 consecutive days of exercise without a pain flare. I could have kept going too on that streak, a pain flare didn’t stop me from continuing on. I was feeling particularly emotionally and physically worn that I let myself have a day or two of rest – and really our bodies need a rest day after 6 consecutive exercise days.

The last month of physical therapy I was able to decrease to a session once every two weeks while maintaining exercises at home. Upon being able to accomplish this decrease without having a pain flare, I was ready to graduate from physical therapy.

I’ve learned I’m going to have to maintain exercising at home on a regular basis to manage the pain from my Abdominal Migraine in conjunction with my nerve medications or the pain will return to its previous level. This is a challenge for me. I haven’t required to maintain my physical therapy exercises in the past. Previously, I was able to maintain the gains I made in therapy, but not this time. My pain level increase once again with a mere break in exercises for 4 days or more.

I wouldn’t have been able to reach pain management without physical therapy. I required the professional guidance of not only what exercises to do but how to do them, the frequency, etc. to move past my plateau of activity and pain. Now I know what exercises to do to maintain pain management and what exercises to do during a pain flare. I went from experiencing difficulty watering my flower garden, sitting or crawling for a few moments on the floor, to being able to do army crawling – something I didn’t dream being able to do following surgery.

I’ve undergone physical therapy before and witnessed the miracles it provides but I didn’t realize the extent of those miracles until now. There are 2 main things I will always recommend now as part of managing chronic illness – counseling for mental health and physical therapy for physical health; they have repeatedly given me back my quality of life.

Advocating at Medical Appointments

Self advocacy is often a trial by error skill that we learn out of necessity with chronic illness. Each encounter with a medical provider may be different and can be a teaching opportunity for us. Studies have shown that the more someone is motivated to be involved in their healthcare, the better health outcomes a person has. Self advocacy quite literally can make the difference in better or poorer health. 

I've been fortunate to be able to learn from my mother as I watched how she managed not only her own health with Familial Adenomatous Polyposis but also how she managed my medical appointments when I was a child and teen with the same health issues. I watched her in her dealings not only with medical providers but also the insurance and medical supply companies. My mother is a fierce advocate and I learned a lot over the years from her. Here are my best practices that I use for myself for my medical care.

• Research

            The first best thing one can do is be armed with information in advance of your medical appointment. I research my symptoms and my health conditions on a regular basis and I gather information from a variety of sources - health websites, medical studies, medical communities, and medical providers I personally know. 

Knowing about one's health conditions and symptoms is vital not only for personal knowledge and self-advocacy but also to improve coping and adjustment to health issues. Giving up control of one's healthcare management to providers without any input or understanding of health conditions and treatments allows for opportunities for treatment options to be missed. 

Gathering information from various sources increases the identification of possible health conditions causing new or worsening symptoms, alternative treatment options that haven't been tried yet, and different medical tests to request.

For instance, I abruptly started having chronic nausea in 2015 after a hospitalization. The standard treatments of oral Zofran or Phenergan were not effective in controlling my nausea. I researched other medications and remedies for controlling nausea and I asked my online medical communities what has worked for others with chronic nausea. After a lot of trial and error and trying various over the counter and prescription options with my doctor, I was able to effectively control my chronic nausea with Compazine and peppermint oil. If I hadn't researched other options and requested my doctor to prescribe medications I was requesting, I wouldn't have been able to find a tolerable solution to my nausea management. I do the same with requesting medical tests and procedures to be conducted when I'm having a new or worsening symptom - whether that's a lab test or procedure such as a scope or imaging test.

• Specialists vs. Primary Care

For appropriate care to be provided, it is crucial to be followed by the appropriate type of doctor for the condition requiring evaluation and treatment. Primary Care doctors are a great place to start for evaluation but if it is a condition outside of general care, we need to be seen by a Specialist for that condition or part of the body. Primary Care doctors have a general understanding of the body whereas Specialists specialize in specific conditions and parts of the body.

When seeking the care of a specialist there are several ways to find a specialist you're looking for. Such as obtaining recommendations or referrals from your existing doctor(s), requesting a list of Specialists from your insurance plan, recommendations from other patients in the chronic illness community, and online medical databases that also provide reviews. Depending on the condition and one's area, some patients choose to be seen by a Specialist outside of their state. 

I am under the care of 7 Specialists and none of these issues should be managed by a Primary Care doctor, they require the care of Specialists:

1. Gastroenterologist manages my GI rare diseases and everything that comes with them and the GI organs I'm missing as a result. He monitors my lab values regularly, adjusts medications as needed, completes my upper and lower scopes on a regular basis, monitors my liver, etc.
2. Hematologist manages my anemia. While my GI Specialist is able to manage my anemia through oral medication and iron infusions/transfusions as needed, a Hematologist specializes in blood disorders and has an even better understanding of my anemia than my GI specialist.
3. Nephrologist monitors my kidney. I have renal cysts that she monitors via ultrasound annually, treats my UTIs, and monitors my lab values regularly. She manages my Vitamin D. While my GI Specialist is able to manage my Vitamin D levels and medication, Vitamin D and the kidneys are intertwined providing my Nephrologist a better understanding of this connection.
4. Neurologist manages my Abdominal Migraine. Once I obtained a neurological disorder diagnosis, my Neurologist began managing my medications to treat the Abdominal Migraine including the pain and nausea that it causes. Previously, my GI specialist was ordering my Lyrica and nausea medications when we believed it was solely a GI issue.
5. Endocrinologist monitors my thyroid. With FAP, a yearly ultrasound of the thyroid is needed to monitor for cancer risks. She also monitors my thyroid via labs as well. 
6. Gynecologist not only monitors my reproductive health but she also monitors my hormones to ensure my estrogen is within range and not worsening my Abdominal Migraine. My organs are adhered to my abdominal wall and pelvis by scar tissue and I have a large ovarian cyst, she monitors these issues to determine if either are attributing or worsening my pain levels and to treat the issues as indicated.
7. Dermatologist monitors and treats any skin issues I have. While I don't require regular appointments at this time, she has treated me for cysts and scars from my abdominal surgeries that weren't healing. 

• Request and Review Medical Records

Obtain copies of all of your medical tests and procedures including history and physicals. Request the images of any imaging tests done. While the majority of people aren't able to read their own imaging disks, it can be helpful to have them on hand in case a future provider would like to see the images. Review your medical records, compare them to previous records, and ask questions to your providers about any concerns or questions you have in your records and test results. Keep a copy of your medical records in a folder to take with you to doctor appointments, especially with new providers.

• Track Symptoms in Detail

Keep track of your health symptoms and any changes to them in detail so that you can accurately and fully discuss your symptoms with your provider. 

• What the symptoms are and what they feel like
• When they started, changed, or stopped
• Duration of symptoms
• What affects the symptoms - medications, foods, etc

• Keep a List of Everything to Discuss at Appointments

Medical appointments can easily veer off track from how you anticipate they'll go and it can be easy to accidently leave out information or questions. To stay on track with your concerns and questions, keep a list of everything you want to discuss in your medical appointment - questions, symptoms, concerns, treatment or test requests, etc. Take with you any applicable medical records or research to your appointment with your list of things to discuss.

• Create Online Accounts with Medical Providers

The easiest way to communicate with your doctors is to create online accounts. This is easier for you and for them. This saves you time waiting on hold and will reduce your wait time for a response. It is much faster for a provider to read your question or concern and reply to you than to try to reach you via phone. Some providers have online portals but don't check them as regularly as others. Ask your provider what their process is with the online portals. If you have sent a message and not received a response back within a week, call the office. 

Another benefit of the online portals is I receive electronic copies of all my labs, office visit summaries, medical procedures and tests that are completed with my lab and hospital system. I can also request records through my hospital online portal without having to call or fax a request. 

• Maintain Regular Communication with Providers

If you have a change in health or a concern and don't contact your doctor in between your appointments, they will assume everything is stable. For your doctor to best provide care, it is essential to maintain regular communication with providers to alert them of any health changes, concerns, or questions you have. They are unable to help you if they don't know something has changed in between appointments.

The easiest way to maintain communication is via online patient portals, however, calling the office remains better than waiting until your next appointment when there's an issue. 

My GI specialist says I use my online portal more than any other patient of his!

• Avoid HMO Insurance Plans

HMO insurance plans significantly reduce your medical care freedom by requiring referrals to see other doctors and also have a smaller in-network selection of providers. If at all possible, choose an insurance plan (i.e. PPO) that doesn't require referrals. Having the freedom to schedule your own appointments with any in-network doctor saves you valuable time, stress, and increases your ability to access medical care. 

As a child, when I started having chronic abdominal pain, my parents had an HMO plan. A referral to a GI specialist was required by the PCP in order for me to be evaluated. My PCP refused to refer me for evaluation stating I "was just a whiny child". My parents had to change to a PPO plan in order to obtain GI evaluation and it was discovered I had inherited Familial Adenomatous Polyposis from my mother and a year later I required my colon to be removed due to my colon polyps starting to turn cancerous. The possible alternative outcomes at the time are countless and unknown due to delay in care caused by having an HMO plan and a PCP who refused providing referrals. 

• Obtain Consultations 

Don't hesitate to ask to be seen by other medical specialties for consults and second opinions. If you have a PPO insurance plan you can find a provider in-network and schedule a consultation without requiring anything from your existing doctors. Specialists are trained to focus primarily in their area of expertise and while your health issue may not be in the realm of another specialist, there's no harm in obtaining a consultation to confirm if something else is occurring.

For instance, I have been having chronic pain shortly after my 8th surgery to remove my gall bladder. After my surgeon released me after ordering a few tests to try to determine the cause of my pain, my GI specialist took over the evaluation. I obtained a second opinion from another surgeon and without success from the tests my GI specialist was ordering, I scheduled an appointment with a Rheumatologist and Neurologist for consultations. Rheumatology was unable to identify any issues in their field but the neurologist was able to provide me a diagnosis and treatment plan for my symptoms. It took 6.5 months and consulting 7 specialists, but I finally was diagnosed with Abdominal Migraine. 

• Ask About Differential Diagnosis

A differential diagnosis is a list of possible conditions that share the same symptoms. This is not a final diagnosis but rather a theory of possible causes for particular symptoms. Once you have this list, then you can ask your provider about each potential cause of your symptoms - why does your provider think or doesn't think X is causing your symptoms and so forth through the differential diagnosis list.

• Request Explanation and Documentation of Denied Medical Requests

If you ask your provider for a certain medical test to be performed or a medication to try and your provider refuses to order the test or medication, then ask why that test or medication isn't being ordered for you. After receiving an explanation, if you still believe the test or medication should be ordered and the provider refuses again, tell your provider that you want your request, the provider's refusal to order the requested items, and the reasoning for refusal to be documented in your medical chart. 

• Change Providers

If you aren't comfortable with any of your doctors, discuss your concerns with the doctor and if the issues aren't resolved, you have the right to change providers - essentially firing them. This can be more difficult if available providers is limited by HMO insurance plans or the area where you receive care (i.e. rural). If possible, it can make a significant difference in medical care if one is able to travel further for care. 

There are some instances where the process of changing providers needs to be carefully done to preserve continued treatment. For example, a dialysis patient cannot receive dialysis treatments without being under the care of a nephrologist. While a dialysis patient can change to a different nephrologist, it is vital for the patient to have an accepting nephrologist before ending care with (firing) their nephrologist to avoid any lapses in their care.