During the month of April I shared a portion of my story each day. After April 19th, I continue to post things related to Addison’s Disease, but “My Story” was essentially finished. I have had a few people ask me to put everything together. Below you will find my Facebook posts from the month of April compiled into one location.
This is my journey with Addison’s Disease. This is My Story.
April 1
Guess what today is????
April 1st and that means it’s the first day of Adrenal Disease Awareness Month, and for me that is reason to wear this shirt!!!!
What is Addison’s Disease??
I could give you a scientific definition that you, and even most physicians, won’t understand but allow me to put it in “Mandi” terms.
Addison’s disease is a severe or total deficiency of the hormones made in the adrenal cortex, caused by its destruction. We all have 2 adrenal glands. The inside of the adrenals produce epinephrine which is produced at times of stress and helps the body respond to “fight or flight.”
The outer portion is more critical and produces two important steroid hormones, cortisol and aldosterone. Cortisol mobilizes nutrients, modifies the body’s response to inflammation, stimulates the liver to raise the blood sugar, and also helps to control the amount of water in the body.
Aldosterone regulates salt and water levels which affects blood volume and blood pressure.
I make no cortisol so therefore I will be steroid dependent for the rest of my life.
April 2
Symptoms of Addison’s Disease I have come to find are much the same for many, based upon what I’ve read, but also quite different. Things that I feel or have experienced other people may not. Leading up to my diagnosis, I was “ill” for almost 2 years with symptoms from severe non stop migraines to seizures, strokes, and complete numbness in my hands and feet with everything in between. There were times when my vision wasn’t right, nor my hearing and my speech would often be slurred. I was having gastrointestinal problems and cardiac symptoms. What we know now, is that every symptom I was being treated for was keeping me alive. Addison’s Disease is rare. 10 people per million are diagnosed but over 50% of people with Addison’s Disease die before they know they have it because they are being treated for the wrong thing. Addisonian’s often have multiple surgeries so physicians can “explore” the body to find what could be causing problems.
I take medication every day to sustain me but that doesn’t mean that I am symptomless now. Many days I just don’t feel good and I often find myself wondering if the way I feel is normal. Now I am always tired, sometimes I don’t feel like eating, I have a constant craving for salt (I could carry a salt lick for a cow), my muscles and joints hurt especially in my legs, I’m grumpy and irritable, I also have a hard time concentrating, most Addisonian’s have low blood pressure where mine trends to be very high, changes in my skin, nausea, vomiting, memory loss, and sometimes I feel like I’m in a fog (no comments please)……I could go on but I also know that the symptoms and outcome as I age with this disease will get worse, like kidney failure.
To you I appear normal and very healthy, but ask my family and especially Mom, Dad, and Drew. During this entire process it has been much easier for me to keep most all of this to myself or among my family. My thought was, if I just cover it up I don’t have to explain it because nobody understands it anyway, but now you do. I may tire out quicker than you, I may can’t do it as quick as you, I may even forget how to, but there is NOTHING I can’t do.
April 3
While sitting down to write today’s post and trying to tell my whole story, it was very long, so I will break it up into two, maybe three days.
I guess to explain my treatment of Addison’s Disease you need to understand how I was diagnosed. Like I said yesterday, I was “ill” for almost two years. It started in December 2007 with minor headaches while I was in college at ETSU that just wouldn’t go away. After several weeks and even months Minor headaches turned into severe migraines everyday, all day. I’m fortunate because I’ve got a personal nurse on call 24/7 and before heading to the doctor we tried to rid the headaches by eliminating things over a period of time that could be causing me to have a reaction. I switched up my study habits, wound up getting new glasses, laundry detergent, make up, hair products, lotion, perfume, I even cut my hair, etc. Along with migraines came heart attack symptoms, loss of concentration, shortness of breath, and clammy sweats, and lightheadedness. Nothing we tried helped and such began the many doctor visits. I was still able to see my pediatrician at this time because I was in college and even with a multiTude of symptoms there were no findings. He gladly referred me to my first neurologist In November 2008 In Roanoke, I was late for one of Drew’s football games on this day. On the first visit I was told I had high blood pressure, she prescribed blood pressure medicine and sent me on my way. The medication did not help the migraines but made me feel even worse. It had the alternate effect and instead of regulating my blood pressure it was bottoming it out. I had to cut the pill in half because I couldn’t handle a full dose. Keep in mind I was still traveling back and forth to Johnson City for school and trying to work. Of course i went back to her and had an EKG that was ok, but she wasn’t very helpful. Blood pressure medication wasn’t working and I didn’t “look sick” but I told my parents I didn’t want to go back to her. So we didn’t.
In January 2009, I seen my second neurologist, Dr. Hill, in Winston. A highly accredited gentleman who was kind, patient, grandfatherly, and he listened. He did diagnose me with having complex migraines and gave me medication to treat them, I even remember him giving me shots of medication into my temples to try to dissolve the migraines. When the migraine medication did not work and my symptoms were worsening he began looking for another diagnosis.
April 4
One thing I want to remind you as you are reading along these next few days is that I was still in college. I was still working part time. I was sill trying to live the life of a typical 21 year old, even though it was getting more and more difficult.
Yesterday I left you with Dr. Hill, my second neurologist, not being able to relieve me from migraines in January 2009, and looking for a new diagnosis. Dr. Hill’s diagnosis included but we’re not limited too, possible hole in my heart, mini strokes, and heart defects. These miscellaneous testing warranted a hospital stay on a Friday evening in May 2009 before Drew graduated high school on Saturday. I refused to miss graduation but was admitted for the first week of 3 the following Sunday morning due to neuropathy in my hands and feet, thus resulting in numerous falls and an inability to even open a pop can. This admission delayed Drew’s graduation trip but during the week I was tested for strokes, MS, Lyme’s Disease, Lou Gherig’s Disease, seizures, etc. It was during this hospitalization we discovered my veins were non existent and only Gladys had the magic and the day of a spinal tap was not a good day to be over dosed on medication. Wendy became our very dear friend and confidant and an excellent care giver……I was fortunate to have nurses my age who were willing to “hang” with me, after all I was the youngest patient on the stroke floor. Discharged one week later with “questionable seizures” and seizure medication, Lamictal, in hand…..we were beach bound. Two days into our vacation…..allergic reaction to medication.
April 5
Ok….yes it is late in the day…and no, I have most definitely NOT forgotten my post! Mom has to help with this part of the story as my memory wasn’t the greatest. This ‘lateness’ was customary in the early stages of my symptoms! Awake at 6:30, bathroom run in prep at an attempt to work, and back in the bed at 9:00am…..just couldn’t function….! Also, I failed to mention….that during this phase; I had episodic kidney stones as well as, frequent falls thus resulting in ER visits, fractures, casts, etc..etc…and my mom’s promise…SHE IS NOT ABUSED! And did I mention my FORGETFULNESS? Many phone calls home to say; “Mom, I can’t find my car”! The response was usually the same….where are you?…I’ll be there in a minute….always talking to me while enroute. My mom had ETSU police and my college BFF’s on speed dial. First Forsyth hospital admit, 05/24/2009; beach trip -allergic reaction; second Forsyth admit 06/29/2009….due to continued advancing symptoms, lethargy, inability to function…..my family and I referred to this as ‘my happy place’. I REALLY do have friends there and they LIKE me. I have the t-shirt to prove it !! #humor works. This hospitalization resulted in yet another physician change, a new neurologist… the ‘good’ doctor Brandon Chandos. This guy was amazing…even though after familial genetic testing, and misc other tests, a definitive diagnosis was still unknown. Dr. Chandos will have additional references as he followed me through to date diagnosis!
April 6
Here we are 6 days in. I had a few comments from people that yesterday’s post wasn’t quite as “cliff hanging” as they had hoped, but that’s the way my journey has been. To help you understand all of MY STORY, there are some days that may not be as interesting to you. I will be honest and say, Mom has had to help with these few days because I just don’t remember a lot of it. Also, this post made me tear up a bit. I was really and truly on a downward spiral and completely dependent on my family. Heard the song at the bottom of this post on the radio this morning and I think it is appropriate for today. We are now up to 5 physicians, 1 week stays at Forsyth times 2, and ….yep….one month later, new symptoms arrive resembling digestive / gallbladder. Breakneck speed (Mom was making like 100 up 77) to New River Valley ER, because these are NEW and UNRELATED symptoms. AUGUST 4, 2009 was hospital admit #3. I was virtually unresponsive for the first three days and from what I’ve been told, my mom was insistent on being invited into the radiology department to be proven the cause for the need to perform emergency exploratory surgery. I’m prettyyyy sure it was the “We THINK she has a perforated bowel” moment she assumed the persona of Hitler! “No, she doesn’t have a perforated bowel”. “No, you’re NOT doing exploratory surgery”. “No..No…No….you don’t seem to understand what WE’VE been through or what I’m TELLING you. I’m not paying you to THINK”. Surgical ICU, for observation, was home to us for yet another week and ….yes…..you guessed it…..ANOTHER diagnosis! It seems, I may have become subject to Chronic Diverticulitis. By this discharge, we have a pharmaceutical storage room at our home and mom seriously considered a cartel career of the shady nature! However erroneous these events may sound, we were truly blessed with caring medical staffs, each working to the best of their ability and each new treatment successful – BUT only for a few days and we would then regress. Additionally, mom and I were so blessed to have had excellent employers.. mom sometimes slept in recliners that would through her out in the floor (her weight couldn’t keep the chairs in reclining position- she lost 85 lbs during this time), sometimes in the floor, and sometimes with me… she never left my side. The reason……by this time she had become my eyes, ears, voice, memory, gait stabilizer, etc…etc! Keep in mind…dad continued to work fulltime, visit in the evenings, keep things going at home….. all the while, Drew is preparing to embark on his wrestling endeavor at VA Tech….a goal that had been much anticipated. Oh…my family…..the strength……the forever smiles……and I didn’t have the ability to even realize their stresses (Grandma eve lost some hair)….. hence, WE LIVE EACH MINUTE AT THE 451!
April 7 And all this time you guys thought I was normal. All these doctors, all these hospital visits, all these medications, lab values a little high, lab values a little low, BUT nothing grossly abnormal AND I “don’t look sick.” From August 2009 until approximately Novemberish 2009 I continued to decline rapidly and I was, we all were, sick and tired of being sick and tired. Dr. Chandos became our right hand man/Doctor and was willing to admit he wasn’t sure but feared I had a rare liver disease, Porphyria. He and Mom researched liver specialists and decided upon Dr. Bloomer, a world renown liver specialist at the University of Alabama. So…..off we went. Mom, Dad, and I road tripped to Alabama for an appointment on January 5, 2010. Again we were very blessed and fortunate to have my adoptive Grandparents in the Birmingham suburbs. We were housed and treated like royalty. An Approximate 1 hour visit with Dr. Bloomer again revealed no gross abnormalities but he was sure something serious was wrong. Back to Virginia we came. In the mean time, my sweet baby brother was at Virginia Tech living his dream. He was wrestling at the collegiate level UNTIL……..the first few weeks of the wrestling season he had to undergo knee surgery due to an injury. He was heart broken as we all were. Was there an end in sight to this journey?? At this point in my 22 year old life, I was done. I was not seeing another doctor. I thought people thought I was crazy. I was exhausted. I was sick. I didn’t feel good. I was tired of fighting. I quit.
April 8
…….I may have quit, but Mama didn’t. In Mom’s words, she was watching me disintegrate, struggling daily to just get out of bed, but mainly struggling to just keep a smile on my face. She always knew when I was in my “happy place.” “I have friends there and they like me.” Going to a movie was out of the question, bed time was 7:30, dating crazy no, who would want that baggage. I didn’t feel like doing anything but sleeping. This was the time in which Mom and I assumed the …sister/twin identity. We were joined at the hip because Mom’s left elbow became my cane. I had a terrible ssssstutter at this point, I was not driving-those privileges had been taken away so the family was transporting me back and forth to Johnson City, I not only had designated drivers but my brother would carry me to my bedroom in my seizure like stupor, and I would fall asleep mid sentence. Classes at ETSU were non existent, mom became my new roommate, she even got two speeding tickets in the same day (and we wonder where I get my driving skills), my spring semester senior year had to be put on hold. Thank goodness for Dr. Florence, the dean of the College of Public Health, a God fearing wonderful man. Mom spent many endless nights, usually without my knowledge, researching symptoms, diseases, physicians, because Dr. Chandos encouraged her, with his assistance, to seek treatment at a teaching facility. The end of April 2010, Mom was at her end and she called Mayo Clinic in Rochester, Minnesota. Mom detailed the progression of my illness over the past 2.5 years and was informed that my case would have to be reviewed with a panel of physicians and that I would be receiving a return call within two weeks. No call received. On Thursday evening, May 6th, 4 o clock, Mom called back. Symptoms were detailed again. Mom was put on hold, several times, each with questions for more detail, and the final hold was, “Mrs. McCraw, can you be here on Tuesday, May 11th? Come prepared to stay two weeks.” Our trip was to be open ended, so air fare was out of the question. Mom and Dad scrambled as they only had one day to prepare work related needs, family and home needs as Drew was staying home, because Mom said we weren’t coming home until we had a diagnosis, it didn’t matter how long it took. And on Saturday morning, May 8th, we left on a two day road trip to the Mayo Clinic not knowing our return or what the trip would hold only a 6 am appointment with Dr. Zirakzadeh (Dr.Z)
April 9
As many of you know Mom has been helping me with these posts because I simply don’t remember a lot of “my story.” However, today I will be flying solo. Mom was delivering breakfast to our neighbor and her co-worker who has recently undergone surgery to remove cancer from her kidney. She has been hospitalized once since her surgery and is in route to the ER again. Mom is with her and her family, at their request. She is a true patient advocate. Please say a prayer for our dear… friend, Karen Gunter Hill , and keep her in mind throughout the day. It takes a long time to get to Rochester, Minnesota. We were insight of our hotel and we ran out of gas. Daddy paid $75 for a gallon of gas only to realize after arriving, we have AAA. Rochester was a beautiful place. Rolling hills and farm land as far as the eye could see, as if the entire city had been created around the Mayo Clinic. We finally made it to our home away from home for AT LEAST two weeks in Rochester on Monday, May, 10th. I had a 6 am appointment with Dr. Z on the 11th, the first appointment of many. On Tuesday morning We rode the transportation bus to Mayo from our hotel, most people are there strictly to be at Mayo or St. Mary’s Hospital. We were dropped off at the main entrance of the stunning Mayo Building to check in. The Mayo Clinic in Rochester employs 32,000 people and sees thousands of patients per day. I was only asked for my insurance information once. Upon check in I was given a packet of information, or an agenda of you will. This packet told me what Doctor I would be seeing, what time I needed to be there, what building, what floor, what wing, and what the doctor would be doing during my visit. We navigated ourselves to Dr. Z’s waiting area, I checked in and was given a pager. When it was time for my appointment the pager would alarm and off we went, with my “book” of a medical record. Mom and I spent over 2 hours with Dr. Z. He read every page of my “book.” He Reviewed films, blood work, test results, and We rehashed every detail of my experience. He gave us a “plan of action” and when we stepped out of his office, we had a new agenda printed for the day, every day and sometimes after every doctor’s appointment or test we would have a new agenda. If we should happen to be late for something, it was ok, but we were never late and even with THOUSANDS of patients being seen daily and even the Dalai Lama (yes he was there when I was) I NEVER waited for my appointment. (Left – my medical record, Right – testing details)
April 10
Continue with me… a walk in my shoes! My new Vibrams were most definitely an eye catcher at Mayo and a great conversational piece as no one had seen them there. Little did they know….they were about the only shoes my swollen feet would fit into, they were less of a fall risk, and were supposedly an enhancer for my virtually neuropathic feet….not to mention…they were PINK!!! I’m thankful for the shoes that made this journey with me and also for the people who journeyed with me……I was not alone.
We do NOT have a diagnosis at this point in my story BUT here are a few symptoms of this disease for you to keep in mind as you continue to read….
Addison’s Disease Symptoms •muscle weakness/ fatigue-check
•weight loss – no, but weight gain
•hyperpigmentation-check
•Low blood pressure-no, but high and low
•Salt craving- check
•Hypoglycemia- check
•Nausea, diarrhea, vomiting- check, check, check
•Irritability- check
•Depression- check
•Pain in lower back, abdomen, and legs- check, check, check
•Loss of consciousness – check
May 11, 2010 – Dr Ali Zirakzadeh ….a subsequent number of tests were done and various consultations obtained.
May 14, 2010 – Dr. Saad Pendergrass (no relation to Charles) – psychiatry consultation….( I DID NOT WANT TO DO THIS- I cried and cried because I KNEW she was going to tell me I was crazy)…diagnosed to have an adjustment disorder, anxiety, and depression……YA THINK…! SOOOOOO …I had to route through relaxation techniques, hence mood music and be instructed on the importance of exercise in stress management. My response…..what kinda exercise can I do in bed?! I HATED HATED this part!! I tried my best to skip it, but Mama and Daddy wouldn’t let me. Next (forgot the date) neurology consult with Dr. Jane H Cerhan – her assessment noted “quite variable in performance with low scores on measurement of task management, of variable psychomotor speed with considerable slowness in some tasks, poor verbal memory scores with low average performance on nonverbal memory, difficulty with problem solving…..again…DUH, YA THINK?! From here I graduated to a full fledge neurological consultation
May 18, 2010, by Dr. Neeraj Kumar……”altered awareness episodes are difficult to characterize, and the possibility of epilepsy cannot be ruled entirely out and certainly her symptoms lack a unifying diagnosis…I am skeptical”….. YA THINK……I’M NOT CRAZY! I will leave you with this …another consult scheduled
May 19, 2010 with Dr. Warren C Ketterling proved to be a turning point. (Left – Vibram Five Fingers, Right – view from the Gonda building)
April 11
oh Dr. Ketterling, such a kind, grandfather, type of gentleman. Lab and test date from all consults thus far were reviewed and “revelaed a couple of interesting findings.” Cortisol levels, corticotropin levels, adrenal gland response, etc. Coupled with “her symptoms are definitely worse to mid late afternoon” prompted him to “if she were my granddaughter, I would want her to see our colleagues in Endocrinology, as I think she’s flying just beneath the wire and her results d…o not clinically suggest Addison’s Disease. Also, further breakdown of the extractable nuclear antigens may be helpful as I detect a borderline anitnucler antibody.” Tests, tests, and more tests ordered by Dr. Ketterling. Peace Plaza (photo below) became our comfort zone. It was during this time, as my physical status allowed, that Mom, per her usual, engulfed us in the culture surrounding Peace Plaza. The bell tower became a favorite, as we could hear the chimes ringing in the street. Mom scheduled a tour of the tower where we watched and spoke with the the carillonneur, Jeff. The carillon is one of the largest in the country. There are 56 bronze bells housed in the tower and Jeff, sits at what looks like an organ. Only this takes ALOT of muscle to play. He sits on the bench and pounds each “baton” with his bare fist and also uses his feet to stomp on a pedal. His force is the only thing that powers the instrument. It was also atop the bell tower, we were able to view the nest of an eagle where she was hatching her young. There was also a live feed of this nest in the main lobby of the clinic….I HATE BIRDS….but this was fascinating. We were able to check in on the Mama Eagle and her babies every day. Peace Plaza also was home to Mac’s, our favorite Greek restaurant, which we visited almost every day! On May 21, 2010 I had my first visit with Dr. Neena Natt. A London native who came to the US over 20 years ago for an internship and wound up staying. She was again a highly accredited physician in the Endocrinology Department. (Left – carillon, Center – Mac’s, Right – Peace Plaza
April 12
We are currently at the two week mark in Minnesota and even my Mayo docs were perplexed as we had no diagnosis.At this point Mom and Dad are part owners of the Comfort Inn and Suites on Commerce Avenue, their staff is amazing, and we now have daily conversations about family and they even have ownership in the transportation system (hahaha). Mom packs our backpack daily-snacks, water, books, etc.- and we have a routine even though we are states away. We have gotten cozy in …Our room that has two queen size beds, a desk, mini fridge, and microwave. Hey!!! We did have a pool! Mom used to be a Boy Scout so she was resourceful with our continental breakfast bar food and she done our laundry at the end of the hall. Another day another doctor……off to see Dr. Natt in Endocrinology. Mayo Clinic is the most efficient place I have ever been in my life. I had tests performed daily. No waiting weeks for results, no calling back, everything is instantaneous, so Dr. Natt had access to all test results upon our arrival. Her impression and plan, “taking into account the context of the situation that a definitive diagnosis has not been found, I think it worthwhile a trial of small-dose hydrocortisone therapy. This will finally put the matter to rest, otherwise, I think Ms. McCraw will always wonder about her previously low cortisol levels. I therefore recommend the following, 1. hydrocortisone- 5mg in the am, 1-2 days and if tolerated increase to 10 mg, 2. I will see her back after the weekend to see how she is doing, 3. If no response, then no further evaluation for possible Adrenal Insufficiency is indicated, 4. If she gets a good response, she will need to have an insulin tolerance test. I explained to Ms. McCraw and her mother that even if she does get a good response on hydrocortisone, this does not confirm an Adrenal problem. (Read the next statement in an English accent) My colleagues think I’m crazy for pursuing this possibility due to lack of test results suggestive of an Adrenal issue.” Somewhat in disbelief and stunned at this possibility we proceed to the Mayo pharmacy to pick up medication. Medication in hand we await transportation to our home away from home. By mid evening I am feeling remarkably better and we decide to try a weekend venture for some sight seeing. We decided to trek North to Lake Superior, approximately an hour and a half into the road trip the old Mandi is back!!!! She has come alive!!!! Bouncing off the walls and Mom jokingly threatens to throw my new medicine out the window. BUT really Mom is quite angry that a tiny, white, common tablet and a few hours has restored her daughters health after…….well you’ve read the story.
April 13
Our weekend on the trial medication was fantastic. I felt GREAT! A headache free weekend…..first time in two years. We were able to go and do several fun things because I actually felt like doing something besides sleeping!!! Most of our weekend was spent near Lake Superior (I still think the ocean runs into the lake somewhere) and close to the Canadian border, we visited Split Rock Lighthouse, and had the opportunity to try several of Guy Fieri’s Diners, Drive In’s, and …Dives……….Psycho Suzie’s and Gordy’s are my FAVORITE!!!! On Monday morning, May 24 we returned for follow up with Dr. Natt as scheduled. After learning of our great/headache free weekend, her response…….”it seems she had a symptomatic response to Hydrocortisone Therapy. I think the next best step is to proceed with an Insulin Tolerance Test (ITT). Looking back at her baseline Cortisol values and also her Cortrosyn Stimulation Test, a diagnosis of Adrenal Insufficiency is NOT CLEAR-CUT. I will see her after the Insulin Tolerance Test.” The good news is I have had a good weekend and it seems as if we are getting closer to an answer. Bad news is I have to discontinue the miracle drug in order to have this test performed. More bad news……..Mayo Clinic didn’t have trained personnel present to perform the test, a phone call to Saint Mary’s Hospital revealed no trained staff either, and we had to wait two days for arrangements to be made for the physician to arrive at Mayo, test to be performed on Wednesday, May 26. Pre- procedure teaching informed us of the severity of this test and the life threatening possibility……in layman’s terms, they were going to induce a diabetic coma to asses my adrenal function. An Insulin Tolerance Test (ITT) is a medical diagnostic procedure during which Insulin is given intravenously to asses Pituitary Function, Adrenal Function, and sometimes other purposes. It is considered to be Gold standard to assess the integrity Hypothalmo-Pituitary- Adrenal Axis. This test is potentially very dangerous and must be undertaken with great care. Side effects of this test include sweating, palpitations, loss of consciousness, convulsions, and coma. Some subjects with no Adrenal Reserve (now we know THAT’S ME) may experience an Addisonian Crisis. One of the contraindications for this test is Hypoadrenalism (now, we know THAT’S ME). Testing details tomorrow folks…..you don’t want to miss this part. Mom and I planned my funeral…….just in case. (Seems as if it’s always Mom and I. Mom was always by my side BUT Daddy was never too far away. He patiently waited. He was our firm foundation.)
April 14
Rise and shine transportation friend….it’s Wednesday, May 26th, we are off to Mayo Clinic for the ITT……appointment at 7:30 am. No Cortisone for two days, fasting for 12 hours, and an anticipation that today is not going to be a good day as we are very much aware of the side effects and possible outcome. I was admitted to an ICU bed, Mom was with me, Dad was patiently waiting, and the staff was busily preparing for the test. The usual assessment questions were asked. IV’s were initiated. Staff explained what we could expect……much chaos as this was a very time sensitive test that required six hands, multiple insulin infusions, and blood samples obtained every few minutes for the next several hours. They also explained to us that once I started to loose consciousness the test would begin and with that they asked Mom to exit the room. In the words of Floyd Allen, Mom quickly responded, “Gentlemen (ladies in this case) I ain’t a goin.” They were somewhat suprised and said they would be back in a few minutes to begin. It was during this time Mom and I talked candidly about death, with a few tears, and planned my funeral as she needed to know these VERY important wishes…….black casket, pink lining, black dress with white polka dots, matching shoes, casket completely open, nails and toenails pink, and the matching bag on an accent pedestal, pink roses, paul bearers, who would conduct the service, and music (Going Away Party by Jeff and Sherry Easter). It’s all about the look, right? I don’t recall the events from the point the testing started until the next morning, however, I remember four things……1. What I was feeling before the test started…….all kinds of emotions. I was afraid….I knew I could die, but I could very well die anyway if I didn’t do the test. Worried…..I’m such a worry wart anyway. There was some relief, knowing this could help me. It’s human to be scared and I was. Knowing that I left my Dad sitting in the waiting room and I may not ever see him again. Scared that there were people that I loved very much waiting for me to get home and I may not return. 2. The physician administering the test had glitter on…..that had to be a good sign right?? 3. I remember what I was wearing…..again all about the look. And 4. I looked over at Mom and smiled right before I went “out.” A look she says she was so familiar with as she cued the staff, they better get started. Again, I was unconscious, in a coma state, for hours and remember nothing about returning to our home away from home or anything else for that matter. Instructed to return the next day to Dr. Natt for test results It was a terrible, horrible, no good, very bad day!!! (According to Mom) Again, a song on the radio this morning…..”Lord I need you, every hour I need you.”
April 15
Morning came early as I could have slept for days as residual ITT results lingered. Follow up appointment scheduled this morning with Dr. Natt for test results and hopefully definitive diagnosis……As we’re traveling my thoughts are rambling with uncertainty…..wish her colleagues hadn’t been skeptical. Mayo Clinic waiting room….called back to see Dr. Natt….”I have reviewed the ITT results. At thirty minutes you developed Hypoglycemia with a glucose level of 32. You’re peak Cortisol level was 14 at sixty minutes. This is an abnormal response and indicates Adrenal Insufficiency.” She questioned me again regarding any possible type of steroid therapy over the last three months, surgery with possible major blood loss, or having had a traumatic head injury, which could have been a caused for these abnormal responses. No, no, and no. “Your symptoms certainly do not fit the traditional ones expected of Adrenal Insufficnecy but your lab results are conclusive. I personally looked at the MRI head film and could see the Pituitary Gland quite clear in the sagittal views and there were no OBVIOUS adinomas (tumor) there. Therefore I am recommending Hydrocortisone- 10 milligrams each morning, and 2.5 milligrams in the afternoon.” She counseled me on sick day rules which outlines doubling my dosages with any significant illnesses such as the flu, upper respiratory infections, or a temperature greater than 101 degrees and to follow this regime for 3 -5 days after each episode and to call her if needed. I was advised to obtain a medic alert bracelet and to carry injectible Dexamethasone in the event of an emergency in which i would be unable to inform an EMS worker or take Hydrocortisone by mouth. In the event of an emergency these medications are required to offset death. She discussed with my mother that the seizure like activity was in reality a pre coma/near death state. Now we know to be referred to as an Addsionoan Crisis. Mom’s face paled a bit with the realization of just how close I had unknowingly flirted with ‘going to visit my friends and not returning.’ I remember vividly Dr. Natt telling us that every misdiagnosis was saving my life, that I was lucky to still be alive. I am blessed NOT lucky. Good news(I guess it’s good)- I now have a diagnosis. Bad news-Dr. Natt is uncertain as to the cause of onset of this disease, as my age at the time of onset of symptoms Was also an abnormal characteristic of Addison’s Disease as it could be caused by a pinpoint size Pituitary Tumor. More bad news- Addison’s is chronic, incurable, BUT manageable. Yes we have a diagnosis but we also have many unanswered questions and we may never find the answers . I also remember vividly, walking out of Mayo Clinic, Mom and Dad holding hands, both were crying because we finally had a diagnosis. Dr Natts plan at this time is to work closely and to coordinate my care with my local family physician Dr. Pryor. She has scheduled me to return to mayo clinic in 6-12 months for follow up and a possible determination if a tumor is present. A few more days, an exit follow up with Dr. Z, a trip to Mayo Clinic pharmacy to pick up emergency meds for our road trip, a sentimental good bye to our Comfort Inn and transpiration families and we are ready to head to Hillsville!!! (Below – my daily routine)
April 16
I know it’s a little late in the day for my post but a late night play called for some extra sleep. For those of you who have been following along today may seem “less exciting” but my story doesn’t stop with a diagnosis.Mom, Dad, and I finally made it home and thus began what we consider to be “Saga Part 2.” With this we told our story to CLOSE family members and began their education as best we could. Many of them had lived through our previous descriptions, but like us didn’t understand it all. For the next year we worked closely with Dr. Pryor, who consulted with Dr. Natt. Dr. Pryor was always just a phone call away…….I do love him! My struggle wasn’t over as we tried to learn how to recognize the triggers that would require medication adjustment. Any added stress on the body whether that be In emergencies or during surgery, hydrocortisone must be given intravenously, during sickness, a fever, some travel, long periods exposed to heat, activities that would make me over exert myself, or even experiencing the death of a loved one, medication must be adjusted. It was not an easy task to figure out when I needed what or how much. Have you ever gotten a “sugar rush” and then crashed? That’s what I felt like when I would adjust medication, but the “crashing” part was hard to recover from……sometimes 2-3 days and sometimes longer. It was learning experience for all us even for my very great family friend Tammy Crotts who works in the pharmacy……her phone calls to say “Mandi, don’t you need more medicine” we’re appreciated….I love her too. As you can probably gather This year was not without many trials and errors. Because we now had a diagnosis did not mean we would be without continued medical anomalies. I continued to have hospital visits for falls (neuropathy), kidney stones (haven’t figured this one out yet), skin changes (Addison’s symptoms), swelling, etc. As time allowed we followed up with each previous physician to let them know their work had not been in vain and my condition had been difficult for Mayo Clinic docs. They were all quite surprised and apologetic….but their work saved me. Mom requested all pediatric medical records, as we have come full circle, so she could review them. She felt like a terrible mother for thinking she had missed something along the way…….frequent visits for falls and headaches that seems justified at the time, and may still be, but we will never know. Sometimes weird things just happen and we have no idea when or why. The photos below is just one of many of the occurrences. No falls. It went as quickly as it came. Life is never dull at the 451.
April 17
Like I said yesterday, for the next year I was able to manage my new diagnosis with the help of Mom, Dr. Pryor, and Dr. Natt. It was almost like a game or puzzle if you will……trying to figure out where all the pieces went. Mom, Dad, and I traveled back to Minnesota for a check up with Dr. Natt in May 2011. I seemed to be doing quite well….still no definitive answer as to why I have Addison’s Disease…..just lucky I guess. After the follow up visit with Dr. Natt we cam…e to the conclusion that even though we loved her dearly, I needed to find an Endocrinologist closer to me…..Minnesota IS a little far to travel for a check up. Such began the long search for a Endocrinologist, which proved to be more difficult than you would think. I spent almost two years of my life searching for an answer so you have to understand that I was happy to know why I was “sick.” I was happy because I finally was feeling some better, but when it came to finding a new doctor, I was afraid. When I saw the psychiatrist at Mayo, I knew she was going to tell me I was crazy and everything I was feeling was in my head. In my mind I thought a new doctor would do the same. I was afraid a new doctor would question Dr. Natt’s intelligence. I knew I felt better and was afraid a new doctor would take away my medication and I would be back to square one. Mom did her usual research and consulted Dr. Pryor until she found an Endocrinologist whom she thought would be helpful. I can’t remember his name….I can tell you where his office is, but not his name. Mom, as always, was with me and we (mostly she) started at the beginning of My Story so he would understand my condition. I left his office in tears. Yes, He attempted to treat me……as a diabetic……I am NOT a diabetic. He was not helpful in regards to Addison’s Disease. I remember him asking Mom and I what we wanted him to do. Well, duh, we want you to monitor my progress, we want you to tell us that we are doing what we’re supposed to be doing, we want you to tell me if I’m taking to much or to little medication, and we want you to help us understand the why. Mom and I sat in the car in the parking lot for several minutes, she was crying with me, and promised we would find another doctor that WOULD be helpful. Needless to say, I never seen him again………
April 18
During the time it took to find an Endocrinologist I had highs and lows, which is too be expected. By this time I had been taking the steroid to sustain me for almost 5 years. Any idea what long term steroid use does to the body??? Brittle bones means broken bones…..both feet, luckily not at the same time. Still having multiple falls. Skin changes, easy bruising, scars, breakouts, and dark patches of discoloration (typical of an Addisonian), swelling…especially hands, feet, and a puffy face, kidney stones, high blood pressure, and lack of sleep. Even on medication I suffered from Addisonian Crisis’ which Mom was able to manage without hospitalizations (THANK GOODNESS – perks of having a full time nurse on staff at the 451) Mom finally found Dr. Perkins, an Endocrinologist at Duke University. My first visit with her was in February 2015. Mom and Dad tagging along. She spent over an hour with us. We have to re-tell My Story to every physician to be sure they know exactly where we have been. Dr. Perkins adjusted my medication, 10 milligram in the morning and 5 milligram to be taken at approximately 1pm daily, blood work to check my basic metabolic panel but also, thyroid, prolactin, renin, aldosterone, and celiac reflex panel. She sent me for a sleep study, which in turn resulted in an oral surgeon visit, and led to braces (I am tin grin…..again). Once she adjusted my medication it took a few weeks for me to really feel good, which I did!! Instructed to return in 6 months for a check – up.
April 19
Before I made it to the 6 month check – up with Dr. Perkins, I received a phone call from Duke. Dr. Perkins was leaving the office she was currently working in and would be focusing strictly on all things that related to the Thyroid. Really?? Another doctor? I just found one that I liked. And she was so helpful. Again, fear swept right over me. I was feeling so good, I didn’t want to have to take three steps back. Luckily, once I met my new Endocrinologist, Dr. Lauren Fritz-Gratian, and we told My Story……..again, I was impressed. I see Dr. Gratian every six months, with my next visit being in August. At every visit, I have tests performed to assure my Cortisol levels are where they should be with hormone replacement therapy and as a precautious measure, other bodily systems are working too. I guess it sounds as if this is where it ends, BUT it doesn’t. My Story will NEVER end. For the rest of my life, I will take medication to keep me alive. I do, however, feel the best now than I have in several years. Who knew that in 2007 I would wake up one morning sick and never get better. Some days I don’t feel good. It’s all I can do to get out of bed. I tire easily. I have to be sure to eat, and sometimes snack. I crave salt, ALL THE TIME, but have to be careful as my blood pressure is high. I gain weight, and try to diet, but it’s so difficult, especially with my medication. I like to exercise, but exercise can wear me out for days. My hands swell. My feet swell. My face swells. I still occasionally fall. My joints hurt, especially when it’s damp or cold. I have hot flashes like nobody’s business and feel like I’m burning on the inside. I sometimes get confused. I have spells of stuttering and I am guilty of not being able to form words to say what I want too. Addison’s Disease is auto- immune, and I have been pretty fortunate until this year, seems as if I have contracted everything I’ve been exposed to. I have days when I could eat a house and days when I have no appetite. I get nauseous for no reason. Travel is sometimes tough, especially if I have to deal with a time change. Heat exhausts me. I feel things and wonder if it’s normal.
At the beginning of this journey, I did not take my medicine like I should. I would skip it on purpose. Forget it. Remember it, and take all of the daily dose at once. I now understand how important it is for me to take it, like I’m supposed too, especially because I could die without it. Now you understand it too, or at least I hope you understand it a little better. Understand that just because I look healthy, I’m not. Understand that because I always “seem so happy and bubbly” I don’t always feel good. Understand that some days are a true struggle for me. Understand that I am not cured, I never will be. Understand that I have a new “normal.” Understand that an invisible illness is REAL. Understand that we are not promised tomorrow. At the 451 we live each moment to the fullest….no second chances, no looking back, nothing left unsaid. Understand that what I have experienced wasn’t fun, but I am blessed, we are blessed. We have a reason to smile. We have a reason to live.
mandiloveslife 