La Mémoire Noire

La Mémoire Noire or The Dark Memory is a letter series written to my first surgeon. The man who caused everything ultimately in my life to reach this point today. I was to have 2 surgeries beginning at the age of 9 and his surgical errors altered the course of my life. Ultimately, I instead would require 7 surgeries and experience repeated life-threatening complications resulting in medical PTSD, suicidal and homicidal ideation. This is trauma I am still trying to heal from nearly 30 years later that has touched every aspect of my life and how I react, view, and process the world. I have a lot of hate and anger for this man. As part of my therapeutic efforts to heal, I am writing this series to him. It is my raw, unedited thoughts and feelings towards this man and all that transpired following my first surgery that he performed. It will be a series that is periodically updated as I process each letter, my trauma, and continue inching towards healing embodying full love and forgiveness for myself and others.

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.

My New Diagnosis: Abdominal Migraine

After 6.5 months of chronic pain that was only improved but not cured by Lyrica, consults with 7 types of doctors, a multitude of tests and an absorbent toll physically, mentally, and financially - I finally have a diagnosis: Abdominal Migraine. 

All of my tests have come back normal from my various specialists except for my pancreas enzyme and platelets that were elevated. I underwent 2 CT scans, abdominal ultrasound, MRCP, 3 MRIs, EEG, sleep deprived EEG, EMG, nerve condition test, and a neuropsych test with all unremarkable results that provided no explanation for my new symptoms and pain. With these normal results, my neurologist came to the conclusion that I likely have abdominal migraine which is a type of migraine. 

My doctor explained that migraine is a chemical imbalance in the brain and depending where at in the brain determines what type of migraine and mine happen to be abdominal. He stated this would explain my trunk pain, chronic nausea, dizziness, scalp sensitivity, hearing sensitivity, headaches, lightheadedness, brain fog, appetite loss, and chest pain. Through our discussions and medical history review, we came to the conclusion that my abdominal migraine started in 2015 after I fell and hit my head. A couple days after the fall, I had a sudden, intense headache that pain medication was unable to treat and after that I've had chronic nausea ever since.

The only medication that's been able to manage my chronic nausea is Compazine, which is an abortive migraine medication to break through migraine symptoms. And Zofran can actually trigger a migraine and hasn't been effective in managing my nausea. To treat my abdominal migraine, he's started me on Amitriptyline which is a preventative migraine medication. 

My doctor explained that abdominal migraine is typically diagnosed among children and often forgotten about for adults often leading to other diagnoses such as IBS. Through our discussions though, this diagnosis makes sense considering all of my accompanying symptoms and the time frame of events. I'm relieved to finally have a diagnosis and a new treatment to pursue for my symptoms. 

It will take 6 weeks for the Amitriptyline to reach it's fully effective state and I've been taking it for 4 weeks now. During the 3rd week, I started noticing periods of time where I was pain free for the first time since these new pains started. I am still requiring the Lyrica in conjunction with the Amitriptyline presently to treat my pain but this may change over time as the Amitriptyline reaches full efficacy levels in my body and dosage may be adjusted. I haven't been experiencing nausea either. I will see my neurologist in another 4 weeks and any medication changes will then be decided upon as he didn't want to make any changes to my Lyrica or Compazine yet. I haven't had any changes to my appetite, although I'm not bothered by that. 

I look forward to my next neurology appointment to see what medication changes may be decided upon and continuing improvement to my symptoms now that a diagnosis has been reached. 

Seeking Consults to Obtain a Diagnosis

In the time since my last update in the beginning of November, I continue to have chronic pain since the 2.5 weeks after my 8th surgery to remove my gall bladder and adhesions for the third time. A lot and yet not enough has occurred during this span.

Carafate didn't affect my symptoms. My liver and pancreas enzymes were elevated. My GI started me on Lyrica in December and within a week, I started to notice an improvement to my pain. While I continue to have pain, it is far more tolerable now with the Lyrica. Afterwards, my liver enzymes decreased to the normal range however my pancreas enzyme continued to increase. This triggered a MRCP to be completed which didn't reveal any new findings or issues. With the GI system being cleared, it was recommended to see a neurologist.

This month I saw rheumatology and neurology for consults. Rheumatology completed labs and started me on a trial of Hydrocortisone. While he didn't believe I had any autoimmune diseases, he wanted to try these two things in order to help rule them out as a possibility. He reasoned that while lab work for autoimmune diseases is not as accurate at identifying an autoimmune issue, trying a steroid would further help identify if an issue existed. I agreed to try the Hydrocortisone as I am allergic to Prednisone - experiencing a combination of acidic stool and painful, fragile, rash like skin that creates an awful combination for using the restroom. The Hydrocortisone is more in line with the body's natural cortisol and typically doesn't have side effects. My labs were all normal. I tolerated a low dose of Hydrocortisone without issue although I also didn't notice an improvement to my pain either. Therefore, I was instructed to double my dose. Within a few hours of my first doubled dose, I experienced the same reaction I have to Prednisone and this side effect lasted for over 24 hours before finally resolving for my body to return to its status quo. I didn't try a second dose - doubled or not - after this. With these results, rheumatology released me advising he believes my pain is a nerve and muscle system issue.

Two days later, I was able to have my consult with neurology. He had me complete different physical tests in the office and poked my pain areas with a safety pin to evaluate how pain feels to me in these areas. I'm uncertain what my reactions and performances meant, although he said there were a lot of inconsistencies in my reaction to the safety pin test as the majority of my pain areas felt dull to the pricks. 

While Fibromyalgia was mentioned, it doesn't fit my pain symptoms. Fibromyalgia is explained as having wide spread dull pain. My pain is sharp, stabbing, crushing, and squeezing with very little dull pain. This is even with the Lyrica helping to reduce the severity and duration of pain episodes. My pain migrates around my torso - from my front, sides, and back and typically is not located within the mid range of my abdomen. At times I do have pain in my hips and sometimes even my knees, particularly if my hips are hurting. Fortunately, the mid range abdominal sensations that my insides were hanging outside of my body have ceased and my incisions are no longer feeling strained. I'm uncertain if these changes are due to the Lyrica or simply time. I have also noticed significant improvement to the balance issues I was experiencing following surgery until the end of December. I was randomly nearly falling over when simply standing or sitting still at least once a week, if not more frequently.

The neurologist explained that my pain may be caused by Multiple Sclerosis (MS) and ordered MRIs with and without contrast of my brain and spine to check for plaque on my brain and/or spinal cord caused by MS as well as tumors or other growths that may be caused by Central Nervous System Cancers (CNS) due to my higher risk for CNS cancers from the FAP. He explained, if my pain isn't caused by either of these two conditions, he doesn't know why I'm having nerve pain. I wasn't surprised by the mention of MS as my pain perfectly describes MS Hugs. 

I also had a follow up with my nephrologist this month who maintains that my pain is caused by severe dehydration and I that I simply need to increase my fluid and potassium intake. While these are not bad changes for me to make, I don't believe these steps will resolve my pain.

I'm continuing to await my MRIs and will have my neurology follow up in mid-February.

I am mentally prepared for the possibility of cancer as I have long anticipated a cancer diagnosis at some point in my life due to the FAP. I am not, however, prepared for a MS diagnosis although I truly anticipate this will be the finding.

I am also resuming counseling as the last year has taken a toll on my mental health.

The Continued Mystery of My Post-Surgical Chronic Pain

I was hoping my health would have improved after experiencing chronic pain complications after returning to work following my 8th surgery; but alas, there has been none. 

Where I've Been Having Chronic Pain since 9/13/21

Not only has my pain continued throughout the majority of my torso, since 9/28/21 my incisions have
started feeling as though they are ripping from the inside out whenever my abdominal muscles are strained or stretched in the least bit. 

I returned to the surgeon on 10/6/21 and he decided to order another CT scan without contrast as my pain hadn't improved. My latest CT scan on 10/14/21 revealed a small hiatal hernia and everything else remained the same. I was distraught upon reading these results. I fully expected to require additional surgery in my lifetime but I didn't expect the possibility of another surgery so soon. I contacted the surgeon's office asking to speak to him about the CT results as I was very upset. He contacted me via phone that afternoon and the information I was provided was even further upsetting to me. I had been crying nearly non-stop after reading my CT results and was actively crying when he called me. The surgeon told me that he believed:

• My hernia wasn't causing or contributing to my pain even the upper stomach pain
• My pain isn't new
• I've had this hernia all along
• He was releasing me to my GI and PCP as he has nothing to offer me or idea what is causing my pain

I wasn't fully processing the information he stated and only managed to repeat the exact things he said but in a question form. To this, he simply repeated the same information without any elaboration of his conclusions or advice for going forward. Afterwards, I realized that the information he stated didn't make sense. The more I thought about it, the more I became enraged. The next day, I left a voicemail for his office explaining that I was confused by his statements for the following reasons:

• Upper stomach pain can be a pain symptom of hiatal hernia
• The pains I've been reporting since 9/13/21 are new, I didn't have them before surgery and the issues I was having prior to surgery, I'm no longer having
• I have had multiple, repeated testing that includes the ones used to diagnose a hiatal hernia and none of those tests ever showed a hiatal hernia until this one

His Medical Assistant called me back and stated "He told me that none of this changes anything, he has nothing surgically to offer you but if you want to see him in the office to discuss it, you can". 

This further enraged me as I felt my trust in this doctor had been betrayed, my concerns and questions dismissed, and I felt frankly abandoned. I thought he understood my medical complexity and that my body has never followed the medical textbook explanations for anything. I felt he had indicated he would follow through with trying to identify the issues I've been having since surgery and now, he was giving up on me. Furthermore, why should I pay this surgeon a copay to finally get answers to the questions I posed when he should have explained his conclusions when he was on the phone with me the day before especially when I'm going to have to pay a copay to consult with my GI and PCP anyway. I figured, I might as well obtain a second opinion from another surgeon, pay that person my copay, and have all my questions answered in one. And, at this point, with confidence and trust lost in this surgeon, I wouldn't feel able to fully believe anything he says going forward.

I immediately followed up with my PCP, GI, and sought a second opinion from another surgeon.

My PCP advised she didn't believe my hernia was causing my pain due to the large scale of my pain not being consistent with symptoms of hiatal hernias. Instead, she thought my pain may be caused by gassiness from my probiotic or esophageal spasms. She advised to stop my probiotic for 1-2 months to determine if my pain would improve. I had stopped taking my Bentyl after surgery as I no longer have been having the abdominal pain it was controlling but resumed the Bentyl as it may help with esophageal spasms. I have not noticed any improvements to my pain with either of these medication changes thus far.

My GI ordered lab and stool tests as the surgeon hadn't checked my blood tests again after my pain started, only before my pain started. Tests showed that my liver and pancreas enzymes are high, white cell blood count low, and there continues to be blood in my stool and the calprotectin levels measuring inflammation in the GI doubled since 8/3/21 - from 58 to 117. Both of these levels remain in the borderline range, however, 120 is the threshold for elevated. He also ordered an abdominal ultrasound, however, no issues were identified by the ultrasound. He suggested the new pain may be due to adhesions. Although, I don't understand why abdominal adhesions would cause pain everywhere other than the abdomen especially considering I just had adhesions removal and the adhesion pain I had prior to this, has stopped. He started me on Carafate for possible Bile Gastritis and I will see him in the office for a follow up on 12/2/21. I remain in regular contact with him and his office though, so he may order additional tests in the meantime.

My Nephrologist advised she believes my torso pain is caused by dehydration and my high liver enzymes are likely due to my medications. Neither of these suggestions make sense to me and my GI reviewed my medications following my test results for possible contraindications with the liver and found none. 

I also scheduled with another surgeon. I obtained the images of my 3 CT scans from this year for him to review and I brought all my paper medical records I have for him as well. The moment I stepped into his office building, I began to cry and continued to do so until he met with me. This was due to my high level of fear and mistrust in new medical providers due to my medical trauma. I felt confident in him prior to our meeting as his reputation as a surgeon is well known and a friend is his patient for hernia repair as well. He spent an hour reviewing my records and talking with me. While he agreed that I am a complicated medical case he explained to me that:

• He isn't convinced I even have a hernia. If I do have a hiatal hernia, it is "tiny". 
• He doesn't believe my possible hiatal hernia is causing me any issues
• He doesn't recommend surgery at this time as he doesn't believe it would benefit me and would only worsen my health issues
• He believes I have recovered well from the surgery itself and my incision pain is likely due to adhesions. My abdomen is also not likely to ever feel "normal" due to all the surgeries I've required so the abdomen issues I'm having are likely to be my normal. (Honestly, I figured as much so I wasn't surprised)
• He doesn't know what is causing my pain and believes my other doctors are "throwing darts" but recommends scopes if gastritis is suspected and to have a Bravo pH test done at the same time to measure my stomach acid 

With my 2nd opinion complete, I feel comfortable in trusting that my possible hernia isn't the issue and I can now relax about the hernia. I don't believe my probiotic or dehydration is the culprit. I don't believe I'm having esophageal spasms and perhaps it is bile gastritis but not convinced there either. Honestly, I'm hoping the Carafate isn't effective as I don't want to take this medicine for the remainder of my life. 

I'm required to take the Carafate 1 hour before meals or 2 hours after meals or I will have an intestinal blockage, which I am already prone to due to adhesions. I typically only eat 1 meal a day in the evening and it is usually only when I'm with Mike for dinner 4-6 times a week. Without him, it's debatable if I will eat anything for the day. When I do eat outside of my daily meal, it is typically a very small snack and often it is late in the day. Therefore, timing when I can safely take the Carafate has been a nightmare. I also am beginning to think the Carafate may be causing me to feel worse. I've noticed I've started feeling feverish (even though I don't have a fever), nauseated, sick to my stomach, symptoms of low blood sugar, and the like sometimes within 30 minutes of taking it. 

I continue to have pain from pressure placed on my abdomen including from clothes or bending. A physical abdominal exam causes severe, post surgery like pain for 1.5-2 days after the exam. I haven't noticed any improvements to my torso pain since it began in mid September, but I do believe I am starting to tolerate it better most days. I suppose that's something. Unfortunately, OTC pain medications are no longer dulling the pain and having my muscles massaged causes intolerable pain. I don't want to start taking prescription strength pain medications for multiple reasons either. At this time, I just hope the pain will improve over time or I will continue to at least improve in my toleration.

When One Thing Becomes Many

I undergo an upper and lower GI scope every two years presently due to my Familial Adenomatous Polyposis. My FAP polyp growth is slow enough at this time to not require more frequent screening. 

I continue to have a carpeted stomach of fundic gland polyps and recurring duodenal FAP polyps - typically just one or two of them. However, this year I asked my GI specialist one medical question in particular for this year's scopes - can he determine what is causing me to have needle like pain in my intestine, near my ostomy reversal connection site. 

My GI specialist was unable to determine any cause for this pain during my lower GI scope and ordered a CT scan for further evaluation. My last CT scan had been in 2017 so he figured another one was due anyway. This CT scan spawned a battery of tests to follow.

My CT Scan this year discovered:

• My enlarged liver grew another 2 cm
• My enlarged pancreas returned to normal size
• My normal sized right ovary doubled in size and now has multiple cysts including one measuring 6.4 cm cyst 
• I continue to have sub centimeter cysts on both kidneys
• I now have innumerable gall stones that have also increased in size

These results led to:

• Surgical consult for removal of gall bladder
• Recommendation for liver biopsy
• Pelvic ultrasounds

My GI specialist advised my needle like pain may be due to my adhesions. He referred me to a surgeon to discuss gall bladder removal due to my innumerable gall stones and recommended for me to have a liver biopsy during the surgery. He stated my gall stones may be contributing to my chronic nausea.

My Nephrologist was pleased that my renal cysts remain less than a centimeter and didn't require my annual kidney/bladder ultrasound this year due to having the CT scan. She also was in agreement with my GI specialist recommending gall bladder removal stating that I am essentially living without a gall bladder presently, it's just still in my body. 

My gynecologist ordered pelvic ultrasounds and determined she wasn't overly concerned about my ovarian cysts and recommended pelvic ultrasounds to be performed in another year to monitor the larger cyst. My ovarian cysts were classified as simple cysts which are common for women to develop during the menstrual cycle and are often symptomless. Ovarian cysts often cause the ovary to become enlarged and ovary size also changes throughout the month during the menstrual cycle. It is common for ovarian cysts to develop and go away on their own. She did not think the enlarged ovary was contributing to my GI symptoms.

My surgical consult is scheduled for the middle of this month and I have also requested another appointment with my GI specialist to further discuss my concerns and questions about having my gall bladder removed. I have accepted that my gall bladder will require removal at some point, however, I still have questions and concerns I want to discuss. I've also decided that whenever I do decide to have my gall bladder removed, I am going to have at least a week of celebrating greasy foods before the surgery.

FAP and Lynch Syndrome Conference

The University of Michigan sponsored a Hereditary Colorectal Cancer Family Day this November in Ann Arbor, Michigan. This wasn't the first year for the family day, but it was my first year to attend. I asked my mother, who also has Familial Polyposis (FAP), to attend with me. Although she was reluctant at first to travel the distance for a two-day trip, she was ultimately glad she attended.



Me and my mother, Ina. Travis, Carleton, and his son Kevin

We hopped on a plane on the morning of Friday, November 10 and made our way to Detroit, Michigan where we were warmly greeted by Kevin, a fellow FAPer and advocate for FAP and Lynch Peer Support Group in Michigan. That night we were privileged to enjoy a small meet and greet with fellow FAPers - Kevin, his father - Carleton, and Travis with Hereditary Colon Cancer Foundation.

The following morning the conference started, and we learned about a variety of topics related to Lynch Syndrome and Familial Polyposis. There were an estimated 60 attendees this year - primarily from Michigan. There was a variety of speakers including genetic counselors, doctors of Gastroenterology, Internal Medicine, Surgery, a Dietitian, and Travis.

We learned a great deal of information during this one-day conference. As a child, I had genetic testing completed to confirm my Familial Polyposis suspected diagnosis, but I don't remember ever talking to a genetic counselor afterwards. I visited with one of the genetic counselors to learn more about this area that I hear others talk about frequently. Genetic counselors help individuals gain access to genetic information and technology, genetic testing and diagnosing, and understanding hereditary conditions. They also can help an individual with a hereditary condition obtain testing and counseling for that individual's family members to determine who else in the family may have the condition.

My mother and I weren't very familiar with Lynch Syndrome before this conference. We learned about Lynch Syndrome from genetic counselors at the University of Michigan Cancer Genetics Department and Dr. C. Richard Boland, himself, who found the gene mutations responsible for Lynch Syndrome. It was interesting to learn that there are 5 different gene mutations that can occur to result in Lynch Syndrome and depending on which gene mutation one has, it will vary the type of cancers the person is predominately at risk for developing. Both syndromes have autosomal dominant inheritance meaning an individual has a 50% chance of inheriting the disease if one of their parents also has the gene.

Lynch Syndrome is also known as Hereditary Non-Polyposis Colon Cancer as the colon isn't carpeted with polyps in the 100s to 1000s as is the case with Familial Polyposis. Although both syndromes have increased risk for other cancers, Lynch has a high occurrence of colorectal cancer, endometrial, and ovarian cancers as well as elevated risk for stomach, liver, urinary tract, central nervous system, small intestine, and sebaceous gland cancers. FAP on the other hand has elevated risks for cancers of the thyroid, small intestine, liver and smaller but still elevated risks for central nervous system, stomach, pancreas, and bile ducts.



Adenomas (Pre Cancerous Polyps) can look different

Screening for cancers is essential for adequate care of Lynch Syndrome and FAP and this includes regular endoscopies and colonoscopies for cancers of the GI tract. Doctors John Carethers, D. Kim Turgeon, and John Byrn explained the colon cancer processes, technology, and techniques used for screening, colonoscopy preps, and surgeries involved for those with both conditions.



Adenomas, precancerous polyps, can vary in shape and size which is why the colonoscopy prep is so important to help the doctor properly identify polyps within the GI tract. There are various prep options including drinks, enemas, meal preps, and pills to help ensure proper cleansing preparation.

Michigan Medicine's Dietitian explained ways to help reduce the risk of colon cancer with healthy eating habits and exercise. It was recommended to:

For the best results, your stool should become light and transparent,

like the example on the farthest right

• Maintain a healthy body mass index
• Exercise for at least 30 minute a day
• Avoid sugar -energy dense foods and drinks including alcohol
• Eat a variety of vegetables, fruits, whole grains, and legumes
• Limit red and processed meats

Grilling or smoked meats have also been shown to increase risk of cancer as charred or burned meat contains carcinogens. Also, the use of a multivitamin, calcium, and vitamin d supplement have been shown to help reduce cancer risk although should be discussed with your doctor.

As genetic counseling plays an important role in identifying hereditary conditions, it is also important for communicating with one's family members for their own genetic testing. We heard from a genetic counselor and a patient panel about their experiences talking to their family members about genetic testing and the assistance received from genetic counselors with family members.

Travis, with Hereditary Colon Cancer Foundation, shared his experience with FAP and ways to advocate for awareness and education of the hereditary colon cancer syndromes. Dr. Elena Stoffel closed the conference with learning about medical advances to prevent the need for chemotherapy such as immunotherapy and gene therapy.

The University of Michigan, Michigan Medicine Department made registration available for a research study of microbiome identified through one's stool and a genetic registry. My mother and I decided to register for both projects.

The Family Microbiome Project looks at the bacteria among family households - families with and without Lynch or FAP. Although this project is currently enlisting family households, they are interested in individuals for a future research project.

The University of Michigan Cancer Genetics Registry has enrolled approximately 6,000 individuals from 4,700 families. To enroll an individual simply needs to have a hereditary cancer syndrome or personal/family history that is possible for one. Enrollment includes consent, medical and family history questionnaire and potential for a blood or saliva donation for research purposes. One doesn't have to reside in Michigan to enroll. Those registered are also notified of events such as the Hereditary Colorectal Family Day. If you're interested in enrolling or learning more, contact Erika Koeppe by email or calling 734-998-1274.


If you're in the Michigan area and interested in a support group for Lynch or FAP there are two support groups to choose from:

• Gilda's Club of Greater Grand Rapids - Alice 616-885-6426
• FAP and Lynch Syndrome Peer Discussion Group - Kevin 734-476-7425

If you're interested in establishing your own support group, read Kevin's tips here: Finding or Establishing Support Groups

My mother and I had a great time attending the conference and would encourage you to attend any future conferences for networking and educational purposes.
It was incredible being in a room with so many others with the same condition at once!

Seeking Answers

My health abruptly changed in 2015. Until that dreadful day in May 2015, my health had been stable since 2007, when I had an unexpected hospitalization due to my hemoglobin inexplicitly plummeting to 4. In 2015, I was suffering from loss of appetite as a side effect of my antidepressant medication resulting in a hospitalization for dehydration.

I continued to feel well physically until the night before my discharge from the hospital. That night I started experiencing an unceasing headache. The headache didn't improve with Tylenol and I finally gave in to trying Morphine - even though Morphine stopped managing my pain several years ago. However, it was in the middle of the night and I didn't want to bother my hospitalist with a medication order simply for a headache. So I consented to give the Morphine a chance to work. As I suspected, the Morphine had no effect on my pain and instead caused extreme nausea and constipation. It wasn't until I was given Phenergan that my nausea started to subside and I was finally able to obtain some sleep in spite of the pain. I didn't expect though to experience such an intense slow down of my bowel that I would feel as though I was starting to have an intestinal blockage from the Morphine.

And that's when my health changed for the worse once again - with that Morphine shot. Ever since I received the Morphine, I've been experiencing chronic nausea, early fullness, and increased abdominal pain particularly when eating. My GI doctor at the time ordered an upper scope and a barium x-ray to check for anything blocking my stomach or delaying gastric emptying. Both tests results were negative for any issue. My doctor chalked my nausea and pain up to adhesions from my previous surgeries. This was quite likely as I have had problems with adhesions previously causing nausea, vomiting, excessive diarrhea, and abdominal pain. It made sense and with multiple trial and error of medications, we found a regiment of medications that managed the symptoms to a tolerable level. I reached a point that I was able to accept my new health status.

My health started to change again though once again in 2017. I've started to have more intestinal blockages - two this year already - whereas I never had this issue previously. My last blockage was in mid August and it was as though someone once again flipped a switch on my health and it abruptly changed yet again. My blockage, fortunately, cleared on its own the next morning. However, with the clearing also came extreme early fullness and abdominal pain with eating. I was no longer able to eat an average size meal. Instead, I was being reduced to eating 8 ounces of soup and feeling as though I had over eaten. The nausea remained at the same level and actually improved due to reduced food intake. My early fullness and abdominal pain continued to worsen though as time went on since the blockage in August. I was further reduced from 8 ounces of soup to a few bites of food and was no longer able to drink liquid without severe abdominal pain and bloating.

With the news of my increased frequency of blockages and my worsening symptoms, my new GI doctor ordered a CT Scan with Contrast. The results showed:

1. Enlarged liver and pancreas
2. Renal Cysts
3. Hyperdense Stones in the Gallbladder
4. Mildly twisted Mesentry
5. Possible inflammation or infection of a fallopian tube
6. Adhesions with dilation of my small intestine indicating possible obstruction

With these results my new GI doctor believed my symptoms were stemming from adhesions, gallstones, and the fallopian tube. And so he ordered labs to check my values and referred me to my gynecologist. My gynecologist advised she thinks the issues with fallopian tube are simply adhesions and not an issue but will be ordering a pelvic ultrasound for better imaging of the fallopian tube for further diagnosing but wants to wait until my GI issues are improved to allow for improved viewing of the ultrasound. My lab results came back well.

My doctor decided to stop my Sulindac medication as side effects of Sulindac include nausea, pain, and diarrhea and to double my Prilosec to help heal any ulcers or irritation possibly caused by the Sulindac. I did notice some improvement to my ability to eat in the evenings. However, the mere sip of water with a morning Prilosec caused instantaneous pain and bloating followed by severe nausea within 20 minutes. Throughout the day my pain continued as well as difficulty eating due to the pain and early fullness. I started to have some days of constipation, which are rare for me on account of my Short Bowel Syndrome.

Next my GI doctor ordered stool samples to be tested and upper and lower scopes. My lab results came back as positive for C-Diff infection and my scopes showed enteritis, or inflammation of the small intestine, likely caused by the C-Diff. I also still have fundic gland polyps in the stomach and a new small polyp in my small intestine that was biopsied to test for cancer. I was started on a round of Vancomycin antibiotics for the C-Diff and my doctor advised I should start to feel better within 2-3 days of starting the antibiotics. And so I wait for both the pathology results and for the antibiotics to work.

As I'm awaiting resolution of my symptoms, I can't help but wonder if some of these issues were starting to appear in 2015 when my health suddenly took a turn for the worse and it was missed by my then GI doctor who dismissed my symptoms as adhesions and adhesions only. Was I developing gallstones back then and it was missed because testing was restricted to only inside my GI tract? I experienced concerns with the previous GI doctor in relation to my Iron and B12 levels as he felt I didn't need either supplement and after consenting to a three month trial without my medications, my levels worsened and I have since required regular iron infusions in addition to iron medication to maintain appropriate iron levels.

I'm trying to not dwell on the what ifs of what may have been discovered two years ago if my doctor at the time had taken the time for additional testing. Perhaps nothing else would have been found. Either way I am grateful for my current doctor for taking the initiative to continue to search for answers and resolutions to my symptoms. Although he anticipates my symptoms to significantly improve once the antibiotics are completed, he reassured me that if the symptoms aren't improved upon we will continue to search for answers to increase my comfort to beyond a just functioning level. My spirit and hopes are lifted with this reassurance as I give time for the antibiotics to work and hopefully work with great outcomes.

Iron Infusion

I was directed to a door to the treatment area. I quickly surveyed the large room as I slowly, nervously walked to the nurse's station to check in. I was by myself this time. I was determined to chip away at my PTSD. I must have picked a good time, there was hardly anyone there. Large recliners lined the walls, framing the room with sectioning lines created by more recliners. Each recliner had its own IV pole. "This your first time here?" a burly man asked. "Yes" I sheepishly answered. I was directed to sit anywhere of my choosing. Surveying the room again, I picked the recliner tucked away in the corner. I'll feel safer there, I reasoned. Positioned in front of a flat screen TV and a wall of snacks, protein drinks, coffee and water machines. I was impressed with the effort to maximize comfort. I waited for a nurse to start my IV, all the while trying to remain composed. I had never attended a medical procedure on my own before. While I waited, a few cancer patients began arriving, easily picking out their chairs, visiting with others. This was routine for them.

I sat quietly observing, scared and pondering.

I was having my first IV Iron Infusion with a second infusion scheduled a week away. With tablets I managed to increase my hemoglobin from 9.2 to 11.4 with an iron saturation of only 3%. I've been lucky to have my hemoglobin reach 12 on occasion. I decided I would undergo the trauma of IVs to see what a high hemoglobin felt like. An experience I haven't had in over 20 years.

It took 3 attempts for an IV to be started. Not necessarily uncommon for me. My emotions were being rubbed raw. Years of medical trauma was rushing back over me and without any notice the tears began streaming from my tightly shut eyes. I didn't even realize I was crying until I felt the warmth of my tears trickling down my cheeks. My psyche couldn't take anymore evidently. I began to doubt myself and my ability to attend medical procedures alone. Maybe this wasn't such a great idea to come alone. I can't take this. I don't know if I can withstand 4 sticks....no 6. I've withstood 6 before....6 and I'm done with this.

3rd stick was the charm. I was warned not to move due to the positional nature of the 3rd IV. Like I'm moving with an IV in anyway, ha. I sat perfectly still as the reddish brown iron began to pump into my arm. My attention brought back to the cancer patients who primarily make up the composition of patients there. I scolded myself for letting my PTSD triggers get the best of me. There I sat with cancer patients who endure IVs and chemotherapy on a regular basis just to attempt to survive what is attacking their bodies and there I sat crying over pediatric needle sized IVs.

15 minutes or so passed and I began to feel overly tired as the iron bag drained itself. This was followed by saline pumping in me to be observed for allergic reaction. This, this is why I thought I could attend on my own. I didn't want to burden anyone with a 15 minute procedure. Granted it took 45 minutes to start the procedure and have a working IV. In my drowsy state my confidence returned. I can do this on my own again next week. I'll try not to let myself cry. I'm stronger than my PTSD, I tell myself.

Bruised, sore, and tired I left to return to work. A coworker explained to me it's normal to feel tired after receiving iron but I should notice an increase in my energy within a day or two. So far I haven't noticed a difference in my energy but remain hopeful as I prepare for my second iron infusion just a few days away.

When Your Doctor Doesn't Believe You

Last year my pediatric GI doctor of over 20 years decided to push me out of the nest and transition me to an adult GI doctor. During my hospitalization last year I faired well with the change in doctors as my new doctor and I started the song and dance of a newly established patient-doctor relationship.

My doctor specializes in short bowel syndrome, which is one of my conditions courtesy of my surgeries related to Familial Polyposis. At my appointment three months ago, my doctor explained that I have the proper sections of my small intestine required for absorption of iron and B12 and therefore do not require these medications. My hair stood on end, I knew differently. I've been taking these medications since my first surgery at age 9. I knew better. However, in a stubborn fit of wanting to prove my self knowledge and gaining my doctors trust in my knowledge, I agreed to forgo my medications for a three month trial.

I was unable to complete the three month trial without my B12. I began to experience exhaustion, sensitivity to light, and numbness in my extremities. I began to worry about the security of my employment under these conditions as well as my daily ability to function. Two weeks prior to the end of the trial period I restarted my daily B12 microlozenges and started to return to my previous state of health. However, I was able to forgo the iron the entire three months.

Lab day came and it was a show down between my doctor and me. Who would be right, who knew me better? He argued my iron and B12 wouldn't drop much in the course of three months from where my levels previously had been.

My B12 was excellent at 793...but I also had restarted my B12 two weeks earlier. With the results skewed, we'll never know how low it had been. I'm okay with that...I was more worried about my iron at this point. 9.4 with a saturation of 2%. Ding Ding We have a winner. Without an ounce of surprise my body held true to its trends. I do require iron and B12 and was ordered to immediately restart my iron.

At my appointment I requested an ultrasound of my thyroid as annual screening is recommended due to the elevated risk of thyroid cancer associated with Familial Polyposis. My doctor found annual screening to be overboard but nevertheless consented. I'm grateful he proceeded to order my thyroid ultrasound for that day as a small solid nodule was found in both lobes of my thyroid. Although most likely benign, it will be important to continue monitoring these nodules as solid nodules have an increased risk of malignancy compared to non-solid nodules.

With my body following my expectations, I'm hopeful that my doctor has gained trust in my self knowledge and understanding of myself.  My body doesn't follow textbook protocols and never has. The sooner my doctors realize and accept this reality the better it is for my care. Perhaps now he will listen to me more with less argument about what my body does.

Sometimes doctor-patient relationships require give and take from both parties as the relationship grows into a partnership for care. Any new doctor-patient relationship may experience a few bumpy courses as both parties are learning the ways of one another and progressing toward a mutual understanding. If you are finding yourself on a bumpy course with your doctor, be open with your doctor about your concerns and work toward a compromise together. Although my doctor doesn't always see eye to eye with me, I'm grateful that he has been cooperative with my medical requests as our relationship becomes cemented.

An Open Letter to Medical Professionals

Everyday we touch the lives of others, whether it's an encounter that's so brief we merely notice it or an ongoing relationship through the years. No encounter is too small. For good or bad, our interactions can be very impactful upon another. Encounters with medical professionals are no different.

As a chronic illness patient, I am always nervous about encounters with my providers - doctors, nurses, technicians - as you hold great power while in your care. Those of us with chronic illnesses have countless encounters and experiences that scar us or lift us up during our medical trials. We constantly wonder if our providers will treat us with care and compassion or will patronize and ridicule us for our needs and fears. Unfortunately, chronic illness patients are far too familiar with both experiences.

Poor experiences with providers multiply our already existing fears. Chronic illness patients have encountered it all. Coldness or warmness, we notice how you look at us, whisper about us, and care for us. We're usually already on high alert, many of us have been scarred from years of testing, procedures, and whatever else the hospital typically holds for us. I developed PTSD during my first year of hospitalizations and surgeries. My entrance into a hospital capitalizes on my PTSD. It cripples me, fearful and suspicious of providers until my trust is gained. I've been ridiculed by providers for the coping techniques I utilize during procedures. I've been patronized by providers for my fear and low tolerance of pain. My death curdling cries for help have been ignored with snide remarks, my life placed on the line of an ego.

When we have a positive, helpful encounter it lifts our spirits in the midst of some of our darkest times. During the course of a year I had multiple stays at my local children's hospital. Although I don't recall many memories from this time and the ones I do recall are not pleasant memories. However, one memory stands out amongst all the others. The memory of one of my nurses has remained with me for 20 years. He treated me with great kindness and understanding. I felt safe in his care, particularly during a time that I was angry and mistrustful from a year of unceasing pain and medical traumas. His impact was so great upon me and our patient - provider bond so strong that my parents and I attended his wedding a year after my hospitalizations ended. His appearance and our interactions are hazy within my mind, but his influence in my physical and mental health during that period remains with me. The core of our interactions remind me that there is a light, even if small, that will help to guide us through darkness.

Fast forward six years later to my second year of multiple hospitalizations. As a young adult, the capacity for my memory has improved since my childhood hospital years. I am reminded of 4 nurses and technicians who aided in my emotional coping during my physical recovery from surgeries, poor health, and countless procedures. I underwent a full round of hyperbaric oxygen treatments and was cared for by two technicians whose humor and compassion actually let me look forward to my treatments. I was distracted from my worries, fears, and medical issues during the long treatments confined in that chamber. And when I returned from a procedure I often would find a technician hiding out in my room during their breaks ready for more laughter.
Although I liked most of my nurses, two stood out from the rest. One of my nurses was able to recognize me by my voice from repeated hospital admissions even before looking at his patient list for the day. His daughter would visit me to help me wash my hair. I looked forward to her visits as one of the most refreshing experiences during my prolonged hospitalizations. Another nurse was engaged to my anesthesiologist. During my many trips downstairs from my 10th floor hospital room to the lower levels of the hospital for my procedures, my nurse and anesthesiologist would have me pass along messages to the other. These messages always provided the three of us with great laughter and smiles and were vital in distracting me from my nervousness about each procedure I was about to undergo.

In dealing with our chronic illnesses, we've spent far too many days in the hospital; we've spent birthdays and holidays there. The hospital is not a fun place for us to be. We don't want to be there. In fact, we dread the hospital even if it's only an outpatient visit. We try to focus on the good experiences. The times we actually are able to laugh amidst our physical and emotional pain.

The care you take in your medical care greatly affects your patients. We notice when you're having a rough day but try to hide it from us, trying to not let it impact your care. Instead finding moments to laugh with us, give a reassuring hand squeeze, a sympathetic ear. We notice when you're exasperated with us, ready to escape from our room and get back to your home. We realize you have a long, hard day. So do we though. We aren't trying to make your day harder, we just want to feel well enough to return to our homes as well.

We find worry and fear in the harsher moments. On your bad days, those tiresome long shifts remember we bond with many of you, finding shared interests or strength in your compassion. We're looking to you for help to get through our stay. Your care makes a difference in our lives - now and in the future.

Adjusting to Change

My doctor is one of my primary foundations in life. She is the only GI doctor I have ever had and she has kept me alive during the hardest times of my life. She has stood by me even in hate filled years when I blamed her and others for my health issues. She is one of my biggest advocates and always looks out for my best interest with an intense empathy and understanding of my physical and mental needs. She has maintained me as a patient for these very needs for 20 years, well past the age of a pediatric patient-doctor relationship. In her 84th year, she's begun to further prepare me for transitioning to adult care. This has been no easy feat due to my trust issues of medical providers. I understand her reasons - she's gradually preparing to retire, she has her own health to consider, and wants to ensure I'm medically taken care of and not thrown to the wolves. She has assured me she will continue to follow me and wants reports from my new adult GI doctor and will remain available to me. I was doing well with this forced separation that is beginning. So I thought.

I made another call this week to a group of GI doctors for a new patient consult. I'm lining appointments up with doctors to interview to find the right fit. As I was speaking to intake and was asked what I'd like the scheduler and doctors to know prior to my appointment as well as what kind of doctor I'd like the anxiety and fear began to flood over me, my voice became shaky, and my eyes wanted to tear. I want a doctor like my doctor. A knowledgeable, empathetic, trustworthy doctor who understands my limits and won't push me over the edge. A doctor who doesn't brush me off and tell me I'm "just whiny" like the doctors and hospital staff did when I was a child. I want to be believed and trusted about my physical and mental needs and limits. I don't want to be sent to multiple doctors.
I want my doctor.

Like with any transformative experience, chronic illness changes and shapes us. One way this occurs is our outlooks on life. Some are very cautious while others become risk takers. I believe though in both types, none of us like change. Even a risk taker wants to continue the ability to take risks in spite of the consequences, there isn't an expectation for change.
I am the more cautious type. Change has never been easy for me regardless what the change was. I like my routines, I like to know what to expect. Change is scary for me. Bad things can happen when there is change.

"THE SECRET OF CHANGE IS TO FOCUS ALL OF YOUR ENERGY, NOT ON FIGHTING THE OLD, BUT BUILDING THE NEW." - Socrates

My life was smooth until my first surgery when everything changed from what I had known. My body changed repeatedly within 1 year and so did the expectations as each surgery changed the plan. Originally, I was to have a temporary ileostomy ending with a jpouch. Due to complications from my intestine wrapping around itself and other organs, delayed response by the surgeon and emergency room staff, a portion of my small intestine died including the formed jpouch that awaited my ileostomy to be taken down. Next a straight pull thru was attempted but too much had been removed and a straight pull thru was deemed impossible. Finally, I was left with a "permanent" ileostomy until 6 years later when a straight pull thru was attempted and achieved by a different surgeon. In high school with my second round of surgeries, I once again didn't know what to expect as my health became a roller coaster of instability. That roller coaster gradually leveled out to rolling hills compared to the peaks and valleys previously experienced.

When you're on a never ending roller coaster of instability you remain at a high level of readiness and alertness, maintaining a level of preparedness for the next worse thing to happen. It's exhausting to remain on alert with your adrenaline pulsing at high speed. Such a high level adrenaline for an extended period leaves you longing for the mundane with your health. I lived like this for years: never knowing if I'd live to the next day, when the next hospitalization would be, if I'd be able to complete all of my school work and pass that semester, make it through a work day. Since the roller coaster has slowed I've become accustomed to the predictability of more stable health. I know what my day is likely to consist of and there is predictability even with my flare ups. I know what I can do to reduce flare up triggers, what most helps ease the flare up, and when the flare up will likely end. I can prepare myself and make it to the other side.

There's a comforting sense of security in predictability and routines. For me, it's like a security blanket wrapped tightly 'round, hugging and holding me in the arms of safety. This need for security expands beyond my health to my home and family life, friends, and work. The stress of drama and the unknown are too demanding on my psyche and can lead to negative health effects. Being a Type A Personality, I require goal setting with extensive step by step planning for how I'm going to move from point A to point Z in life. Without this extensive plan, I feel lost in the world. As long as I can readjust my plan I can find my footing once again but if I have a difficult time establishing that new plan, it's a major upset to my mind. Not knowing what to expect is also distressing even in the most insignificant situations. This seems to be common among Highly Sensitive Persons. The unknown is overwhelming and uncomfortable for me. Once I become familiar with the individual, setting, or situation I am able to relax more and find my way. But it's that initial plunge that is highly stressful. And so I don't like those changes either. I become comfortable within my work and social groups, enjoying the warmth and security of the familiar. Changing such environments require me to let myself let go of comfort and plunge into the unfamiliar. This is not always an easy feat.

"IT TAKES A LOT OF COURAGE TO RELEASE THE FAMILIAR AND SEEMINGLY SECURE, TO EMBRACE THE NEW. BUT THERE IS NO REAL SECURITY IN WHAT IS NO LONGER MEANINGFUL. THERE IS MORE SECURITY IN THE ADVENTUROUS AND EXCITING, FOR IN MOVEMENT THERE IS LIFE, AND IN CHANGE THERE IS POWER." - Alan Cohen

And yet, regardless of the reasons for resistance and dislike for change it is a requirement of life and we must find ways to adjust to the changes we face. We all tackle change differently and through trial and error will find what works best for us. I've found these techniques to be particularly helpful during a change process. Depending on the size and challenge of the change, these techniques may require prolonged use or may be accomplished in a seemingly quick fashion.

• Changing the thought, feeling, behavior cycle. There is a connection between our thoughts, feelings, and behavior. We change one and we change them all. It can be a vicious cycle of negativity or it can be a healthy cycle of positivity.
• Thought: I'll never find another doctor I'll trust or like
• Feeling: Hopeless and Scared
• Behavior: Discontinue medical services, guarded or defiant attitude with new doctors, depression, delayed action to find a new doctor, etc.

Change the cycle to:

•  New Thought: I'll find a doctor I like and trust, it just may take some time to find the right fit
• New Feeling: Hopeful and Determined
• New Behavior: Continued pursuit of a doctor for the right fit, openness with new doctors
• Reframing. We have negative thoughts all the time even without realizing we're having them. They're often those fast, immediate thoughts we have that fleet in and out of our minds. These thoughts feed into the thought, feeling, behavior cycle. We can help stop the cycle with recognizing and altering our negative thoughts. This reframing also helps us remember what is possible, our strengths, and gives hope. I like to make "coping cards" and list positive thought reminders, coping techniques, and helpful tips as a visual and tangible reminder.
  
  • This doctor won't be anything like my doctor ---> I'm going to give this doctor a chance and if I don't feel comfortable I can try another doctor.
  • I hate finding a new doctor ---> It can be difficult to find the right fit but I will, there are a lot of good doctors around
  • I can't do this ---> I'm stronger than my fears and anxieties. This is just one more challenge and I will conquer it
•  Goal Setting. Any change in behavior typically requires some goal setting, even if we do this automatically without thought. It's easier to tackle change by breaking it down into manageable, realistic steps. This keeps our motivation going and reduced the feeling of being overwhelmed.
• Relax. Keep your frustration to a minimum to prevent burn out during the change process. Maintaining motivation will keep us moving forward to the other side. Relaxation helps keep the frustration reduced and motivation high. Find what works best for you: hobbies, relaxation techniques, socialization, etc.
• Re-evaluate. When you feel like you're hitting a wall or spinning your wheels, take a moment to breathe and re-evaluate the situation. What is working and what isn't working? Do your goals need to be changed, do you need to readjust your attitude and mindset, is there a better way to tackle this change?
• Support. A support partner during a difficult period of change can make a huge difference in your moral and navigation through the change. Talk about your fears and your challenges rather than bottling them up. Seek your support partner's opinion, set goals with your partner and let your partner hold you accountable to your goals.
• Allow Change to be an Opportunity. Good things can come from change even if it's scary at first. Without change we can't grow as individuals. New jobs challenge our skill sets, broaden our horizons, may alter our economic development. Meeting new people exposes us to new ideas, information, and cultures, allowing us to learn from others and grow our networks. Moving residences lets us experience another area with its own unique community. Challenges and changes add to our strengths and our accomplishments as we progress through the process.