My chronic illness journey is lengthy story. I began seeking help for all my whackamole symptoms from the Healthcare System in 1999. My progressive deterioration took 17 years before the culprit received an official name. I was diagnosed with Ehlers-Danlos Syndrome by my primary care physician in January 2016. This finding was corroborated in May 2016 by a Geneticist at WVU with probable suspicion of the Vascular Type. Unfortunately, this type of Ehlers-Danlos Syndrome carries considerable risks to mortality as well as a shortened life span.
The road to diagnosis was hard on the body, mind and spirit. My adult life is riddled with unusual, episodic, acute health crises. There were even times I questioned if my illness was really only in my head just as my abusive ex and several ignorant physicians tried to convince me as was the case. Once I finally reached the City of Diagnosis™ there was no reversing the damage occurring over time and space. Many of my issues are beyond the point of repair.
Now the only thing to do is preserve the function left as best I can. I must live a hauntingly, low-key life in order to avoid symptom inducing triggers. Over the twenty years living with symptoms related to Ehlers-Danlos I’ve learned survival means taking action (and avoiding actions) known to trigger further deterioration. In the last year, I’ve lost abilities many of us take for granted. Some more personal than others, but I’ll just say you know things are bad when you lose your ability to stand without fainting and swallow without choking. Life becomes an entirely different experience when these are the challenges you face day-to-day.
Coping with all this change is no easy task. While at peace with this disease process, I would be lying if I said I didn’t have days I am anything but peaceful with the losses this genetic illness created. However, I choose to live harmoniously with both the positives and negatives in life because without balance either force threatens to create chaos. This is solid life lesson is one I can not share with others enough, especially in the wake of positivity culture failing to account for the universal physics of energy.
My illness blocks me from many proverbial roads to experiences I would give anything to have or even be lucky enough to have again. Despite these losses new experiences take the empty slots in my life to make up for those I’m losing out on. In coping with the loses, I committed to blogging, writing books and creating art. These endeavors lived on my list of life goals for roughly twenty years before suddenly I found myself with all the time in the world to sit in bed and work on the internet as there is no expectation other than the ones I put on myself. I am happy to have the opportunity to rediscover my next fulfilling purpose in life. While I am no longer able to handle the responsibilities entailed with my former position as a Registered Nurse, my true passion was for wellness, understanding states of disease and helping others through the many peaks and troughs of life stand even though I cannot.
As I create this brand out of my experience, I realize more everyday how the universe propelled me to this position for a purpose. I hope to reach others who are meeting the challenges in achieving accurate diagnosis along with access to care for improving quality of life with chronic disease. The path is a scary, lonely one sometimes. Any light I can shed on journey fills my soul with all sorts of positive squiggles.
If not for other Chronic Illness Bloggers, I may still be searching for a name to put to my multi-systemic issues. Each day I log on to visit the chronic illness communities of the internet to find support, resourceful information and validation for my diagnosis of Ehlers-Danlos Syndrome.
Back before this site or my other website Stomach-vs-Heart: The Art of Survival were even thought of, I blogged my experiences with the first severe health crisis due to my chronic illness on MySpace. The event captivated the attention of my fellow nursing students as my massive complications from ERCP induced pancreatitis created a great case study to accompany the material on the upcoming Gastrointestinal Nursing Considerations final. It was the last month of the program and I barely made it to graduation. Afterwards at home, I hooked up to my intravenous nutrition. I was readmitted for further complications for another extended stay just 3 days after I took my last exam for the program.
In the spirit of #ThrowbackThursday, I present my first chronic illness blog posts from when this happened in 2007 thru 2008. Looking back at these sudden complications as the precursor to many years of EDS related gastrointestinal involvement makes much more sense than the line of BS given to me by my doctors at the time. If only I knew then what I know now maybe things would be different today.
These posts are from the vaults of MySpace. It took a little over 6 months after requesting my blog archive for MySpace to deliver, but it was worth the wait to find my 26 thru 28-year-old self dealing with scary health problems without a known cause. The posts illustrate just one example of how Ehlers-Danlos Syndrome presents under the stress of life. Please enjoy these very personal post from my past and please share with others whom may need of help navigating the journey to global diagnosis!
Keeping it together
Originally Posted to MySpace 4/21/2007 6:10 PM
Life has been trying as of late.
Lucky for me, I am surrounded by friends, family and school instructors that are very supportive of my current health situation.I have now been in the hospital for 15 days as a result of having an ERCP (scope procedure) done to help fix my problems with normal dietary intake. Consequently, the procedure caused me to get a hefty case of pancreatitis that will not progress in healing enough for me to go home.
By the grace of a higher power, I am still able to graduate from school as planned (as long as I pass my exams) and the family has pulled together to help Chad and I with the kids and other associated duties.
It is getting tough to avoid being discouraged each day that goes by leaving the future in uncertainty as far as my health is concerned. I just keep thinking: Why do I have to be strange?
Papillary stenosis of the common bile duct, the reason I got the ERCP, is only found in a very small proportion of the population. The development of pancreatitis has somewhat befuddled my doctor because he did not mess around with my pancreas very much this time. Moreover, the slow progression of the healing process, the formation of a pseudocyst and the fluctuations in my lab values top it off to make my case all around odd.
I am not really getting better, but I am not getting worse either. This is where the frustrations lie.
However, I keep reminding myself of the positives in this situation:
1. Being in the hospital gives me ample time to study for my classes.
2. Being in the hospital offers a unique opportunity to learn more about the real world of nursing.
3. I have got to experience the patient’s point of view on pancreatitis, pain control, total parenteral therapy, PICC line insertion, medication effects ect…
4. I am getting a lot of sleep.
5. I am being caught up on current events via the news (never watch it before).
6. I have high-speed net access. 7. I have quit smoking.
Therefore, it is not all bad–
I just miss my kids and house and school and all those things in my regular life that cause me stress.
And You Take it in Stride
Originally Posted to MySpace 5/26/2007 1:28AM
I’ve been back in the hospital for a week now.
Things are getting to me because I am not getting any answers as to why the powers that be won’t let me go. Therefore, I continue to serve my time and dwell on things.
Health issues are challenging at any age, I am sure. Nonetheless, my issues…at my age, are slowly breaking down my spirit. I feel angry about my body’s inability to bounce back quickly. I am frustrated with my lack of knowledge on what is causing my whacked out labs. Moreover, I am aggravated at the physician’s lack of knowledge on the subject as well.
I miss my family and life. I miss feeling exuberant. I miss myself. I have been a shadow of myself for the past 6 months it seems. I have been too fatigued and sick to be myself–that sucks.
I know this crap cannot go on forever, but right now, it feels like there is no end. It could always be worse…but at the same time, it has never been this bad for me. It is like pain perception: completely subjective.
I have mini pity parties for myself each day regardless of the obvious maladaptive consequences. It is like scratching an itch though. Comfort is temporary found as I whaller in my self-pity.
Guilt is weighing on me as well. I have been hard on my body over the years, especially during the span from 19 to 21 years of age. Reminding myself that I was still growing up then and trying to find my identity after going through some horrible events provides minimal consolation. I wish I could reach out to girls like me at that age and help them get off the self-destructive roller coaster.
Enough bellyaching though…I need to get off the turmoil train and back into my life. Strength is buried somewhere within me, I just need to muster the energy to find it.
Don’t Take Your Health for Granted
Originally Posted to MySpace 5/31/2007 2:32PM
This time tomorrow, I will be recovering from the largest surgical procedure ever performed on me.
The doctor’s plan is to use a portion of my small bowel to act as a drain for the newly diagnosed cyst (no longer a pseudocyst) at the tail of my pancreas and then remove my gallbladder to test the main & common bile duct for any further obstruction. The surgery is as open as they come and will take anywhere from 1 and 1/2 to over 2 hours.
Afterwards, I will have the pleasure (j/k) of a NG tube and epidural analgesic with a button I can push to relieve pain (Thank Goodness!). Recovery will take about 4-5 days if everything goes right and then I will be able to go home to be with my family, finally. Oh, and the other benefit is I will not have this horrible pain in my stomach or any further difficulties with eating.
This has been such a long hard journey for my family and me. Tonight the kids came in to see me and Gavin just held to me tight when it was time to leave and sobbed. My daughter Jordan says, “I am fine everywhere else, but when I come home it feels that things just aren’t in order.” Emarie, my eldest, bottles it all up inside and only shows her sadness when no one is around. Everyday Chad says, “I just wish you were home.” At least 50 times a day I can feel my heart aching for this to be over.
When it is over, I will be sure to take care of myself with the goal of never being hospitalized again. I look at life before this and realize what little care I took in keeping healthy over the years. From running solely on energy drinks and slim fast to staying up all night to catch up on work and smoking as if carbon monoxide is good for the body, I never thought my health would suffer. Nevertheless, when the engine runs out of oil, driving further only results in permanent damage to the motor.
Hopefully all the prayers, well wishes and expertise of my doctors will fix me so I run like new or at least better than this. Then I will never again carry the “it’ll never happen to me” attitude…
In Retrospect of the Entire Experience
Originally Posted to MySpace 6/12/2007 1:52AM
Just one day short of six weeks in a two-month time span is the amount of time I spent in the hospital.
The duration of my stay afforded me positive and negative familiarities on a level of personal & professional value. As a nursing student on the brink of graduation, the initial 3-week-stay proved to be a huge challenge to employment as a registered nurse this year.
Contrastively, the personal level experiences gave me time to ruminate about my life so far, consider possibilities for the future, learn how to go from being independent to dependant and finally realizing the impact low-end health status has on well-being.
Somehow, I have to use my unique and difficult experience to positively affect the way I approach life and, if I am lucky enough, help others by having a highly empathetic sensitivity to others challenged by difficult life events.
So what better to do than evaluate the experience by making a table:
|Personal Level Stuff||Some of the stages of grief: Denial, Anger, Acceptance, Intense irritability at times, Some feelings of isolation, even though family and friends were very supportive. Just a feeling like no one else could completely understand; Realizing how poorly I was taking care of myself prior to the whole thing (ie. Energy drink addiction, not getting proper sleep) Evaluation of priorities in my life: Getting my family back in order & spending more quality time with them. Establishing a plan for getting fiscal issues in order (Finally!) Staying spiritually sound. Avoiding negativity. Getting healthy and staying that way. All & all get really organized with my house and house related stuff. Learned to pray again. Quit Smoking.|
|Professional Level Stuff||Worked out plan for career goals- Work in psychiatric nursing at entry-level position for 3 years.
Get CE credits and read up on psychiatric nursing current events. Begin to write essays and article-type material and submit to nursing journals. Begin to get BSN in 4th year. Reevaluate career goals after getting BSN. Gained tremendous amount of insight into what a patient must go through. Saw first-hand how new nurses and seasoned nurses have a different ideas when it comes to nursing. Saw the reality of how the nursing shortage is affecting nurses. Experienced first hand how continuity of care can easily be broken when disciplines involved are negligent. Determined what “type” of nurse I want to be and saw what “type” of nurse I do not want to be. Learned what therapeutic communication means to the patient. Saw the importance of a committed responsibility of the nurse and patient-care assistant to providing the patient with proper care and using communication to properly document progress in accomplishing goals of the care plan.
|Physical Level Stuff||Procedures: Catheterization 2x, NG tube, PICC line, IV lines, Enemas, Suppositories, Oral cathartics, Oxygen, Anesthesia 2x, Epidural, Total Parenteral Nutrition, Abdominal surgery, Gastroduodenoscopy, Open Cholecystectomy.
Diagnostics: Somewhere between 7 and 10 CAT scans with contrast dye on the abdomen and thorax, 1 Ultrasound with contrast, 5 Chest X-rays, Countless blood draws for work-ups, 2 ERCPs.
Problems & Issues: Papillary Stenosis, Acute Pancreatitis, 7 cm pseudocyst in the tail of the pancreas, Anemia, Septic Infection, Pneumonia d/t bacterial seeding from PICC line infection, Triple Elevated Liver Enzymes, Severe pain from anesthesia mistake, Chronic pain from pseudocyst & blocked main bile duct,
Anorexia, Weight loss, N/V/D, Fatigue, Night Sweats, Weakness, Hypotension,
Loss of independence.
The Sphincter of Oddi: Oh What a Pain!
Originally Posted to MySpace 11/18/2008 7:40AM
This is day 15 in the hospital. It is all becoming a little reminiscent of my stay last year.
Fortunately, I am being transferred to Allegheny Hospital on Monday. At first, my primary physician was convinced I had some sort of off the wall food allergy or sensitivity because my guts where showing massive inflammation and tissue damage on laboratory tests. My gastroenterologist, who consequently can’t stand my primary physician, was sure that I had Sphincter of Oddi Dysfunction, which was the reason for the ERCP and sphincterotomy last year. Unfortunately, the papillae can grow over, even after it has been cut open. Obviously, this is likely the case. Sadly enough, my gastroenterologist from last year, who fixed that problem is now retired; hence, the need to go to Pittsburgh where trained oddi professionals exist.
I am in a tremendous amount of pain and have been for the last few months. It has been the same nightmare relived. My GI doc I fired after being admitted to the hospital this time dismissed my problem had said “You and your silly nervous bowel. Take some xanax and an SSRI and it will get better.” IBS is extremely over diagnosed and sadly enough may cover up other problems.
The way my current GI doc explains my IBS with the word hyperalgesia and increased transit time for bowel emptying. The hyperalgesia just as it sounds: an increased sensitivity to pain. In the case of IBS this increased response is in the gut. He says what is pain for you is 10 times worse pain for me. I guess that means the sensitivity goes as far as letting my body know there is something wrong, even before blood work shows that as the case.
This all started a few months ago. The process was very much like last year and I told my Doctors this; however, most test results came back relatively normal. In this Ohio Valley so many people are pain pill abusers that the doctors are seemingly programmed to suspect that in the case nothing shows on standard tests. I began to have my difficultly with eating. I would experience severe pain with solid food of any kind. I was becoming very fatigued, sleeping upwards to 12 hours a day.
Sadly enough, even with all that sleep, I felt even more exhausted. I went to my PCP at the time and he put me on Vicodin for the pain and orders the standard battery of tests that pop up when the diagnosis code for upper quadrant stomach pain is entered. As I said, everything came back unremarkable. I was still hurting though and the pain was increasingly worsening. I was calling off work. I had put myself on a bland liquid diet. But according to my doctors, I was the picture of perfect health.
So I tried to live normally. I would try to eat real food, but it would still put me in severe pain. I would try to sleep less, but my body wouldn’t comply. It kept getting worse. I was forced to visit the ER a few times because of the pain. One time I was admitted for 4 days for a bowel impaction. The other times, they did the usual blood work treated my pain and told me to follow-up with my PCP.
So I followed up with my PCP at [name omitted]. At this point, I was still taking Vicodin for the pain. Nonetheless, the Vicodin was not covering my pain whatsoever. I was taking more of the medication trying to find some relief, but it was in vain. Anyhow, my doctor came in and had the nerve to say to “You can’t just go around popping Vicodin for the rest of your life. You need to accept you may have to live with this pain forever because I think most of it is in your head.”
I felt like I had been slapped repeatedly in the face. First of all, I wasn’t even asking for more medication. Second of all, I knew there was something wrong with me. I left the office in tears. Taking the advice of my mom, I went to see my former PCP. He had taken care of me before and I knew he would listen to my problem and sincerely try to find the cause.
At my office visit, he spent 2 hours with me, taking down my symptoms, performing a thorough physical exam and, best of all, treating me like he believed I was honest about my predicament. Contrasting this with this whooping 2 minutes the other doctor spent with me, I finally felt I may get some relief from my awful pain.
However, after a few weeks it became apparent this Vicodin, toradol and levsin were not enough to manage my pain and I needed to be in the hospital to get any relief. That brings us up to speed. Here in the hospital I am getting a large dose of methadone twice a day and Dilaudid every two to three hours. I should be a zombie and have no sensation whatsoever, but I still hurt badly.
My former, now current PCP is an environmental medicine doctor. He has run numerous tests trying to uncover the cause of my pain. An endeavor I respect, but I knew that he wasn’t going to find anything directly related to my pain. My GI doctor said it was defiantly Sphincter of Oddi Dysfunction. I felt this way the proper diagnosis as well because of the similarity of my symptoms from the last time I had sphincter of oddi dysfunction aka papillary stenosis.
The huge question is why have I been in the hospital for 16 days now if the specialist knew what my problem was. Well, Dr. GI had wanted to get my pain under control so I could eat solids and go home. After that the plan was to refer me to Allegheny General to get the sphincter pressures measured and fixed. My condition did not allow for that what with my inability to eat, Liver function tests elevating and my pain increasing each day.
I am hopeful I will get a full remission from the pain, but I know it may not be possible what with the damage that has happened as a result of this hospital stay. I am looking forward to going to AGH because they are the 3 place in the nation for sphincter of oddi dysfunction. Optimistically thinking, I hope they find out why the papilla has grown over again.
It has been difficult on my kids.They have all tried to be strong during this process, but strength doesn’t change the fact that they miss me. My son asked me the other day, “Do you miss the hugs and the kisses?” I certainly do. My Jordan is very open about her sorrow in the situation while my Emarie tries to be cool and hold everything inside.
So, this story is to be continued. I am hoping that AGH has high-speed internet, but I don’t know. Nonetheless, I’ve downloaded enough things to keep me occupied while I am there. I will try to update my blog with any new info as I receive it.
I Thought I’d Have it Figured Out by Now
Originally Posted to MySpace 10/10/2008 7:17AM
So, last time I left off I was going to AGH to get fixed.
Well, I am pretty well fixed. It was, in fact, Sphincter of Oddi dysfunction. Lucky for AGH, this dysfunction can occur again and again and again. Lucky for me, all I have to do is make an appointment with my docs at AGH, get scoped and continue to live another without severe pain.
Sadly enough, I can’t eat the foods I want to eat anymore. My GI system is intolerant to any foods that are yummy like spinach and artichoke dip, gyros or hot poppers. Don’t cry for me yet though because I can eat all the fruit, salad, fish and even sometimes chicken that I desire. Is that not the diet of supermodels???
Now, my docs are just trying to figure my IBS out. I get weird spasms that are painful enough to stop me in my tracks, but not so to the point that I need narcotics to deal. I’ve been off narcotics for three weeks now and I couldn’t be happier. I can actually stay awake all day and all night. I went through a pretty icky withdrawal period; thus, lending to my empathy for those “drug seekers.” But I made it and didn’t end up on the streets begging for a fix.
My story becomes thicker now though. The story of my second marriage is a sad, long one I will write about one day.
Nonetheless, I am much happier now. I feel like I have a new lease on life.
All the drudgeries of it aren’t over, but I see the light at the end of the tunnel and I feel like I can breathe again.
I look back 7 to 10 years ago at myself and I see how I screwed myself up. It was the fatal mistake many people make: Trying to find happiness in another. If I could get my flux capacitor to work I would go back, kidnap myself, and beat it into my brain that happiness is not found in a relationship, even if all those romantic feelings are abounding. Happiness with another is only possible if one is happy with themselves…
So what am I doing now? I am making my self happy. I am working on being the person I have wanted to be. And most of all, I am trying not to f*** it all up by taking things more than a day at a time or bringing others into my metamorphosis. I don’t want to commit myself to anything right now aside from figuring out where I want to be in my life.
The simplicity of that is what I need to be strong.
My old blogs tell a tale many chronic illness survivors related to.
While this is but an excerpt of my chronic illness life story, it provides an important illustration on the broken system that is Healthcare in Northeastern America. Not once did anyone suggest genetic testing even in light of my odd, life threatening reaction to corrective surgery and the painstaking after effects. The result nearly a decade later is a non-absorbent gastrointestinal system which is also coming apart at the surgical sites internally. With proper education on this disorder, I believe my physicians would have ordered genetic testing back when all my major problems began rather than 9 years after the fact and perhaps I found not be struggling now to maintain my weight at a little over 100 pounds.
All to often those with chronic illness must fight for years in the gauntlet of healthcare to finally come to a diagnosis, only to be told the damage is irreversible. In sharing this #TBT chronic illness story my goal is to share a bit more about my own challenges, offer support for those who commiserate on these struggles and provide potential clues to undiagnosed Ehlers-Danlos patients struggling within the system for proper recognition and treatment. Sharing our stories of struggle provides strength to our collective and raises awareness across the world!
Thanks for taking time to read my story! Please feel free to comment below to share your own chronic illness memories, revelations or opinions.
May your day be blessed with as many spoons as your need to get through it!