“Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!”
Our “Official mascot” is the zebra.
Our mascot
In med school, student doctors are told âWhen you hear hoofbeats, think horses, not zebrasâ.
According to Wikipedia: âZebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so âzebraâ is the broader concept.
The term derives from the aphorism ‘When you hear hoofbeats behind you, donât expect to see a zebra’, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse.
A zebra cup my DH bought me đ
By 1960, the aphorism was widely known in medical circles.â
Why? Because those of us who DO have a rare disorder know from personal experience what it feels like to be dismissed by a doctor or in many cases, multiple doctors. Many physicians have completely lost the ability to even imagine that zebras may exist!  Cushing’s is too rare – you couldn’t possible have that.  Well… rare means some people get it.  Why couldn’t it be me?
Although one of my signature images has a zebra, many have rainbows or butterflies in them so I guess that I consider those my own personal mascots.
I have a special affinity for rainbows. To me, a rainbow is a sign that things are going to be ok.
Years ago, our little family was in Florida. I felt guilty about going because my dad was terminally ill with his second bout of colon cancer. I was worried about him and said a little prayer for him.
I was lying on the beach while DH and our son were in the ocean and I looked up and saw a rainbow. It was a perfectly clear, sunny afternoon. I even called the people out of the water, in case it was something I wanted to see that didn’t really exist. They saw it, too.
Where in the world did that rainbow come from, if it wasn’t a sign that everything would be ok?
Butterflies are something else again. Â I like them because I would like to think that my life has evolved like a butterfly’s, from something ugly and unattractive to something a big easier on the eye.
My Cushie self was the caterpillar, post-op is more butterfly-ish, if not in looks, in good deeds.
For as long as I can remember, I’ve loved butterflies for their beauty and what they stood for. I’ve always wanted to shed my cocoon and become someone else, someone beautiful, graceful.
One of my first memories as a kid was knocking on the back door of my house and when my mom answered, I’d pretend to somehow be an orphan, looking for some kind person to take me in. And I would try to be that different child, with new habits, in the hopes that my parents would somehow think better of me, love me more as this poor homeless kid than they did as their own.
The butterfly was trying to emerge but it never got too far. Somehow, I would slip into my original self and be a bother to my parents.
Sleep. Â Naps. Â Fatigue, Exhaustion. Â I still have them all. Â I wrote on my bio in 1987 after my pituitary surgery âI am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.â
That seems to be changing back, at least on the weekends. Â A recent weekend, both days, I took 7-hour naps each day and I still woke up tired. Thatâs awfully close to taking a whole day off to sleep again.
In 2006, I flew to Chicago, IL for a Cushingâs weekend in Rockford. Â Someone else drove us to Lake Geneva, Wisconsin for the day. Â Too much travel, too Cushie, whatever, I was too tired to stay awake. Â I actually had put my head down on the dining room table and fallen asleep but our hostess suggested the sofa instead. Â Amazing that I traveled that whole distance – and missed the main event đ
This sleeping thing really impacts my life.  Between piano lessons, I take a nap.  I sleep as late as possible in the mornings and afternoons are pretty much taken up by naps.  I nod off at night during TV. One time I came home between church services and missed the third service because I fell asleep.
I only TiVo old tv shows that I can watch and fall asleep to since I already know the ending.
A few years ago I was doing physical therapy twice a week for 2 hours at a time for a knee injury (read more about that in Bees Knees). Â I come home from that exhausted – and in more pain than when I went. Â I knew it was working and my knee got better for a while, but it’s such a time and energy sapper. Â Neither of which I can really spare.
Maybe now that Iâm nearly 19Â years out from my kidney cancer (May 9, 2006) I’ve been back on Growth Hormone again. Â My surgeon says he âthoughtâ itâs ok. Â I was sort of afraid to ask my endo about it, though but he gave me the go-ahead. Â I want to feel better and get the benefits of the GH again but I don’t want any type of cancer again and I certainly canât afford to lose another kidney.
I always laugh when I see that commercial online for something called Serovital. Â I saw it in Costco the other day and it mentions pituitary right on the package. Â I wish I could take the people buying this, sit them down and tell them not to mess with their pituitary glands. Â But I won’t. Â I’ll take a nap instead because Iâm feeling so old and weary today, and yesterday.
So, these are only seven of the many, many symptoms of Cushing’s. Â I had those above – and I often felt like I looked like one of those little bearded dwarves.
Cushing’s affects every part of the body. Â It’s not like when I had kidney cancer and only the kidney was affected.
Here are some of the many areas affected.
Progressive obesity and skin changes
Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
Thinning, fragile skin that bruises easily
Slow healing of cuts, insect bites and infections
Acne
Women with Cushing’s syndrome may experience:
Thicker or more visible body and facial hair (hirsutism)
Irregular or absent menstrual periods
Men with Cushing’s syndrome may experience:
Decreased libido
Decreased fertility
Erectile dysfunction
Other signs and symptoms include:
Fatigue
Muscle weakness
Depression, anxiety and irritability
Loss of emotional control
Cognitive difficulties
New or worsened high blood pressure
Glucose intolerance that may lead to diabetes
Headache
Bone loss, leading to fractures over time
Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
Recurrent opportunistic or bacterial infections
Think you have Cushing’s? Â Get to a doctor and don’t give up!
From MaryO’s bio:  (At the NIH in October 1987) The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.)
Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrollable bleeding from a major artery.
The test did show where the tumor probably was located.
Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery…
At that time, there was evidence of a pit tumor but it wasnât showing up on an MRI. So, I had my IPSS scheduled. An IPSS stands for Inferior Petrosal Sinus Sampling. It is done because 60 % of Cushingâs based pituitary tumors are so small that they do not show up on an MRI. Non Cushingâs experts do not know this so they often blow patients off, even after the labs show a high level of ACTH in the brain through blood work. An overproduction of the hormone ACTH from the pituitary communicates to the adrenal glands to overproduce cortisol. Well, the IPSS procedure is where they put catheters up through your groin through your body up into your head to draw samples to basically see which side of your pituitary the extra hormone is coming from, thus indicating where the tumor is. U of C is the only place in IL that does it.
…
I was scheduled to get an IPSS at U of C on June 28th, 2011 to locate the tumor. Two days after the IPSS, I began having spontaneous blackouts and ended up in the hospital for 6 days. The docs out here had no clue what was happening and I was having between 4-7 blackouts a day! My life was in danger and they were not helping me! We donât know why, but the IPSS triggered something! But, no one wanted to be accountable so they told me the passing out, which I was not doing before, was all in my head being triggered by psychological issues. They did run many tests. But, they were all the wrong tests. I say all the time; itâs like going into Subway and ordering a turkey sandwich and giving them money and getting a tuna sandwich. You would be mad! What if they told you, âWe gave you a sandwich!â Even if they were to give you a dozen sandwiches; if it wasnât turkey, it wouldnât be the right one. This is how I feel about these tests that they ran and said were all ânormalâ. The doctors kept telling us that they ran all of these tests so they could cover themselves. Yet, they were not looking at the right things, even though, I (the patient) kept telling them that this was an endocrine issue and had something to do with my tumor! Well, guess how good God is?!!!!
…
Fast forward, I ended up in the hospital with these blackouts after my IPSS. The doctors, including MY local endocrinologist told me there was no medical evidence for my blackouts. In fact, he told the entire treatment team that he even doubted if I even had a tumor! However, this is the same man who referred me for the IPSS in the first place! I was literally dying and no one was helping me! We reached out to Dr. Ludlam in Seattle and told him of the situation. He told me he knew exactly what was going on. For some reason, there was a change in my brain tumor activity that happened after my IPSS. No one, to this day, has been able to answer the question as to whether the IPSS caused the change in tumor activity. The tumor, for some reason, began shutting itself on and off. When it would shut off, my cortisol would drop and would put me in a state of adrenal insufficiency, causing these blackouts!
Dr. Ludlam said as soon as we were discharged, we needed to fly out to Seattle so that he could help me! The hospital discharged me in worse condition then when I came in. I had a blackout an hour after discharge! But get thisâŚThe DAY the hospital sent me home saying that I did not have a pit tumor, my IPSS results were waiting for me! EVIDENCE OF TUMOR ON THE LEFT SIDE OF MY PITUITARY GLAND!!!
The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake â I could actually feel them moving around in my head.)
This test concluded that my Cushingâs was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was âwhere is the tumor?â
Another defining moment in my career from a research perspective was when I was a fellow, I had to do a project. We were seeing a lot of patients with Cushingâs â of course, thatâs why I went there â and in those days we had no good imaging. There were no CT scans, no MRI, there was no way to image the pituitary gland to find out whether there was a tumor. By the late â70s it became obvious that some patients with Cushingâs syndrome didnât have pituitary tumors. They had tumors in their lungs and other places, and there was no good way of sorting these patients from the pituitary patients.
My mentor at UCSF, Blake Tyrrell, MD, had the idea of sampling from the jugular vein to see if there was a gradient across the pituitary. I took the project up because I didnât think this is going to be helpful due to there being too much venous admixture in the jugular vein from other sources of cerebral venous drainage. We went into the radiology suite to do the first patient. As I was sampling blood from the peripheral veins, the interventional radiologist, David Norman, MD, says, âWould you like to sample the inferior petrosal sinus?â I said, âWhy not? It sounds like a good idea to me.â That turned out to be helpful. We then studied several patients, and it eventually went to publication. Now everybody acknowledges it is necessary, maybe not in all patients with Cushingâs, but in many patients with Cushingâs to separate pituitary from nonpituitary Cushingâs syndrome.
__________
Official information
Patient information from Canterbury Health Limited Endocrine Services
INFERIOR PETROSAL SINUS SAMPLING WITH CRH STIMULATION
Introduction
You have been diagnosed with Cushing’s syndrome which results from excessive production of the hormone cortisol, made by the adrenal glands. In your case, the adrenal glands are being driven by excessive amounts of another hormone called ACTH. This test is to determine where that ACTH is coming from. Constant high levels of ACTH are usually caused by a tumor. Approximately 80% of cases are tumors of the pituitary gland while the remainder may occur in the lung, pancreas and other sites (known as “ectopic” sites).
This test relies on the fact that if the source of your high ACTH is the pituitary gland blood levels taken from very near the gland will be higher than the blood level in an arm vein. Pituitary gland tumors are often tiny and can’t be seen even with the most modern scanners. This test will help your endocrinologist to know with almost 100% certainty whether the pituitary gland is the source or if a search is needed elsewhere (for example in the lungs or abdomen). This guides treatment, for example the recommendation for Pituitary surgery.
Procedure
You are allowed water only from midnight the night before (nothing else to eat or drink). You will be given a light sedative, but will be awake during the procedure. You will be taken to the Radiology Department where the procedure will take place. The radiologist will place some local anesthetic into the groin on each side over the main vein that drains blood from each leg. Then a fine bore catheter will be passed up the vein, past the heart and into the major vein in the neck (the jugular vein). From there it is passed into a smaller vein that drains blood directly from the pituitary gland, known as the inferior petrosal sinus. The procedure is repeated for the other side. X-ray screening guides the radiologist to know where the catheters are positioned. A small butterfly needle is inserted into an arm vein.
Once the catheters are in place, blood samples will be taken from the right and left petrosal sinus, and an arm vein at exactly the same time. After two baseline samples, a hormone called CRH is injected into the arm vein. This increases ACTH when a pituitary gland tumor is present, but has no effect on ectopic ACTH production. Further blood samples are taken for another 10 to 15 minutes, then the catheters are withdrawn. Pressure is applied to the groins to minimize bruising. Often sampling is continued from the arm vein only, for a total of 90 minutes. You will have to remain lying on your back for at least 2 hours afterwards.
Risks
This procedure is very safe when performed by an experienced radiologist. Rarely, there have been reports of people having a stroke at the time of this procedure but this was related to a catheter of faulty design which is now no longer used. Bruising, which is common in Cushing’s syndrome, may occur after the catheters are pulled out. Some people notice flushing of the face after the CRH and rarely it can result in a fall in blood pressure.
Patients who are suspected of having a pituitary tumor resulting in Cushing’s syndrome may be referred for inferior petrosal sinus sampling if findings on MRI examination of the pituitary did not reveal a tumor or are inconclusive.
The inferior petrosal sinus sampling procedure is performed in the radiology department. With the patient on the angiography table both groin regions are partially shaved, sterilized, and a local anesthetic is injected into the skin to provide pain relief. A tiny incision is made within the skin and a needle is inserted to puncture the femoral vein which drains blood from the leg. A small catheter is then inserted into the vein and flushed with an intravenous solution. Longer catheters are passed into the shorter catheters and advanced through the large veins traversing the torso into the neck and then into the base of the skull. Thereafter, a microcatheter is advanced through each of these larger guiding catheters and threaded into the inferior petrosal sinuses which lie along the internal aspect of the skull base and drain blood from the pituitary gland. Once these microcatheters have been positioned, contrast dye is injected and X-rays are taken to verify their position in the inferior petrosal sinuses. Next, blood samples are collected from both catheters in the inferior petrosal sinuses and from a peripheral (usually arm) vein. Thereafter, corticotropin-releasing hormone is administered through the peripheral vein. Repeat blood samples are drawn 2, 5, and 10 minutes after the injection. Additional X-rays are taken to confirm that the catheters were not dislodged from their site during the sampling procedure. Thereafter, the catheters are removed and direct pressure is applied to the groin region to decrease the likelihood of bruising. Patients are observed for 4 hours following the procedure to ensure that no bleeding from the femoral vein puncture sites will occur. Normal non-strenuous activity may be resumed 48 hours after the procedure.
Sedatives and pain relievers may be administered during the procedure as necessary. A blood thinner might be used depending on the patient’s anatomy and the clinical suspicion of developing a blood clot. If a blood thinner is used, this may be counteracted with medication at the conclusion of the procedure to ensure that normal blood clotting resumes while removing the catheters. Overall, the inferior petrosal sinus sampling procedure involves minimal discomfort. The risks of the procedure are small. X-rays are used but the radiation doses are minimized. Infection is controlled by using sterile technique. Some patients might have an unexpected allergic reaction to the dye used during the study. A bruise may develop within the groin. Although rare, blood clots have developed in the groin veins following this procedure. Again, steps are taken to minimize the likelihood of each and every one of these complications.
ACTH levels are measured in each of the blood samples obtained during the procedure. The ratios between the petrosal sinus sampling and the peripheral vein samples are compared. The results are used to determine whether ACTH production is due to either a pituitary or a non-pituitary source.
Patients who are suspected of having a pituitary tumor resulting in Cushing’s syndrome may be referred for inferior petrosal sinus sampling if findings on MRI examination of the pituitary did not reveal a tumor or are inconclusive.
The inferior petrosal sinus sampling procedure is performed in the radiology department. With the patient on the angiography table both groin regions are partially shaved, sterilized, and a local anesthetic is injected into the skin to provide pain relief. A tiny incision is made within the skin and a needle is inserted to puncture the femoral vein which drains blood from the leg. A small catheter is then inserted into the vein and flushed with an intravenous solution. Longer catheters are passed into the shorter catheters and advanced through the large veins traversing the torso into the neck and then into the base of the skull. Thereafter, a microcatheter is advanced through each of these larger guiding catheters and threaded into the inferior petrosal sinuses which lie along the internal aspect of the skull base and drain blood from the pituitary gland. Once these microcatheters have been positioned, contrast dye is injected and X-rays are taken to verify their position in the inferior petrosal sinuses. Next, blood samples are collected from both catheters in the inferior petrosal sinuses and from a peripheral (usually arm) vein. Thereafter, corticotropin-releasing hormone is administered through the peripheral vein. Repeat blood samples are drawn 2, 5, and 10 minutes after the injection. Additional X-rays are taken to confirm that the catheters were not dislodged from their site during the sampling procedure. Thereafter, the catheters are removed and direct pressure is applied to the groin region to decrease the likelihood of bruising. Patients are observed for 4 hours following the procedure to ensure that no bleeding from the femoral vein puncture sites will occur. Normal non-strenuous activity may be resumed 48 hours after the procedure.
Sedatives and pain relievers may be administered during the procedure as necessary. A blood thinner might be used depending on the patient’s anatomy and the clinical suspicion of developing a blood clot. If a blood thinner is used, this may be counteracted with medication at the conclusion of the procedure to ensure that normal blood clotting resumes while removing the catheters. Overall, the inferior petrosal sinus sampling procedure involves minimal discomfort. The risks of the procedure are small. X-rays are used but the radiation doses are minimized. Infection is controlled by using sterile technique. Some patients might have an unexpected allergic reaction to the dye used during the study. A bruise may develop within the groin. Although rare, blood clots have developed in the groin veins following this procedure. Again, steps are taken to minimize the likelihood of each and every one of these complications.
ACTH levels are measured in each of the blood samples obtained during the procedure. The ratios between the petrosal sinus sampling and the peripheral vein samples are compared. The results are used to determine whether ACTH production is due to either a pituitary or a non-pituitary source.
The IPSS test is done in some patients to identify if there is too much ACTH is causing the excess production of cortisol, and where it is coming from.
How do we do an IPSS procedure?
Typically under general anesthesia, we place small tubes (catheters) into the femoral veins (the main vein draining the legs) at the level of the groin. From there, under X-ray guidance, we navigate those catheters to the main veins which drain the Pituitary gland. These are the inferior petrosal sinuses (right and left). We then draw samples from those veins and the main vein of the abdomen and test those samples for ACTH. We also take timed samples after giving a dose of medication which would normally stimulate the production of ACTH to improve the sensitivity of the test.
When we get the results, the different levels of ACTH may help the endocrinologist determine where the tumor is located that is causing the adrenal gland to produce the excess cortisol. If it is from the Pituitary gland, any difference between the right and left samples may help the surgeon determine the surgical plan to remove the tumor yet preserve the normal Pituitary gland.
Example of testing results:
Time
Right IPS
Left IPS
Inf Vena Cava
Cortisol
Baseline 1Â Â Â 09:32
40 pg/ml
17
18
25 mcg/dl
Baseline 2Â Â Â 09:34
45
18
15
24
DDAVP inj    09:38
Post 2min   09:40
72
21
18
Post 5min   09:43
157
20
19
Post 10min 09:48
161
30
25
Post 15min 09:53
162
33
26
Post 30min 10:08
124
32
29
30
This example shows elevation of ACTH in the right inferior petrosal sinus, likely indicating a tumor in the right side of the pituitary gland causing Cushingâs Disease.
Picture of contrast injection of the inferior petrosal sinuses:
Tips of the catheters in the inferior petrosal sinuses.
Note that this particular Cushie Car is gone. The current car is still blue and has the same Cush1e tags. đ
Today, I’m thankful for my “Cushie Car”.
Since I started attending Cushing’s events, I’ve always tried to rent a PT Cruiser. There’s just been something about them that I liked.
A couple of years ago, after my son was out of school, I was getting tired of driving the Mom-Carpool-Van everywhere. I think my mom was getting tired of stepping up into it, too. She doesn’t drive anymore, so she relies on whatever vehicle I’m driving to get her to appointments. So, I was delighted when she offered to pay for part of it. She didn’t realize it was going to be bright blue, though. I think she was thinking of navy or something more dignified.
Anyway, I had the car picked out, and the exact color I wanted and set off to the car dealership with my specs. They told me that the Cruiser didn’t come in this shade of blue. I’m sure that they wanted to sell one of the colors they had on the lot.
I got back to them and told them that I found this car online and I could go get it myself. Suddenly the dealership was able to get it for me, too, so I won out. WooHoo.
I’m just loving this car. đ
From a Cushing’s get-together in Columbus, OH, 2007, the yellow version đ
As a person with secondary adrenal insufficiency, I find often find myself in a situation when I need to stress dose and balance the electrolytes. Many Cushies I know eat salt for this purpose but I don’t like salt. If I’m eating pretzels or something else with removeable salt – i take it off.
I don’t know if I found it by myself on amazon or someone recommended it but I always have a product called – TaDa! – SaltSticks nearby.
Writing this post today, I actually looked at the directions and found that I’m supposed to take 2 at a time. Oops! One does help somewhat. I’m sure that 2 will be even better.
To keep these and my hydrocortisone nearby, in addition to the actual bottles, I got some waterproof pill containers and keep them on my keychain. The wider ones hold 2 of the SaltSticks exactly.
The narrower ones have hydrocortisone and Tylenol. The hydrocortisone is in the red pill container.
All 3 are on one ring which goes onto my larger carabiner clip so that they can be easily moved if necessary.
In my backpack, I have an adrenal insufficiency emergency kit of sorts that I got off ebay. This also includes a bee sting kit. If you want to know why, check out this post. there is also information about my doctor, more hydrocortisone, benadryl, tylenol.
Both the keyring and the emergency kit have MedicAlert tags which include my member number so medics can find out just what I need, my DH number and my doctor’s number.
This info is also on my MedicAlert bracelet. I bought this one years ago to honor Natalie’s memory – this is the same style she wore.
Advice from a Volunteer Firefighter with Adrenal Insufficiency
My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.
Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.
Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.
First off if you are looking for a medic alert bracelet or wondering if you should get one.
**The answer is yes, If you have been diagnosed ANY TYPE of adrenal insufficient or are on replacement medication.. YES. you need one.**
Here are some of those reasons and some pointers on what they should look like / what they should say.
#1â If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why youâre unconscious.
#2â It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE âCLOUDâ BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesnât belong to the person we NEED to talk to.
#3â DO NOT MAKE IT âPRETTYâ OR âNOT SO OBVIOUSâ. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them⌠THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isnât obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.
#4â Most EMTâs and Paramedics Donât Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put âADRENAL INSUFFICIENTâ on your bracelet and NOT âSTEROID DEPENDENTâ please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.
#5â If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Donât jump in here if you are one of those states that doesnât allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you⌠guess what now, not only is the guessing game over, Youâre ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication thatâs been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.
Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.
IF you know that your local EMS agency uses the âcloudâ for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didnât use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.
The image below sure looks like it was made by Sandra Boynton but I got it from another page on Facebook.
These tips are good for anyone who needs a little self-care – not just people with adrenal insufficiency!
What do you do for self care? Please tell me in the comments.
Fact: In the words of our dear friend and advocate, Robin Ess, “There are many genetic varieties with quite a few discovered in the past couple of years. Plus, there are several types such as adrenal, ectopic, and pituitary. And so on”….Amazingly, some doctors do not realize that there are different varieties of Cushing’s and that the symptoms can come from a different source.
For instance, a doctor might rule out a pituitary tumor and completely dismiss the patient, even with biochemical evidence of Cushing’s. That doctor, instead of dismissing the patient, should thoroughly look for other potential sources, such as an adrenal tumor, or yet another source. Did you know that tumors on one’s lungs can even cause Cushing’s? Most people don’t know that.
MaryONote: Folks might be interested in reading Jayne’s story, a Cushing’s patient who had pituitary surgeries and a bilateral adrenalectomy before finding the true source of her ectopic Cushing’s – lung tumors.
Since not too many people signed up this year, I’m going to be reposting some past Blogging Challenge Posts:
MaryO kicks off Cushing’s Awareness Month with a blog post about a testing method that had been discussed for years but many of us haven’t been tested this way.Â
How in the world did we get here in a Cushing’s Challenge?  I’m sliding these in because earlier I linked (possibly!) my growth hormone use as a cause of my cancer – and I took the GH due to Cushing’s issues.  Clear?  LOL
I had found out that I had my kidney cancer on Friday, April 28, 2006 and my surgery on May 9, 2006. Â I was supposed to go on a Cushie Cruise to Bermuda on May 14, 2006. Â My surgeon said that there was no way I could go on that cruise and I could not postpone my surgery until after that cruise.
I got out of the hospital on the day that the other Cushies left for the cruise and realized that I wouldn’t have been much (ANY!) fun and I wouldn’t have had any.
An especially amusing thread from that cruise is The Adventures of Penelopee Cruise (on the Cushing’s Help message boards).  Someone had brought a UFC jug and decorated her and had her pose around the ship.
The beginning text reads:
Penelopee had a lovely time on Explorer of the Seas which was a five day cruise to Bermuda. She needed something to cheer her up since her brother, Tom, went off the deep end, but that’s another story!
Penelopee wanted to take in all of the sights and sounds of this lovely vessel. Every day she needed to do at least one special thing. Being a Cushie, she didn’t have enough spoons to do too much every day.
On the first day, she went sunning on the Libido deck……she didn’t last too long, only about 10 minutes. Goodness, look at her color! Do you think maybe her ACTH is too high?
Although I missed this trip, I was feeling well enough to go to Sedona, Arizona in August 2006. Â I convinced everyone that I was well enough to go off-road in a pink jeep, Â DH wanted to report me to my surgeon but I survived without too much pain and posed for the header image.
In 2009, I figured I had âextra yearsâ since I survived cancer and I wanted to do something kinda scary, yet fun. So, somehow, I decided on ziplining. Tom wouldnât go with me but Michael would so I set this up almost as soon as we booked a Caribbean cruise to replace the Cushie Cruise to Bermuda.
Each person had a harness around their legs with attached pulleys and carabiners. Women had them on their chests as well. In addition, we had leather construction gloves and hard hats.
We climbed to the top of the first platform and were given brief instructions and off we went. Because of the heavy gloves, I couldnât get any pictures. I had thought that they would take some of us on the hardest line to sell to us later but they didn’t. They also didnât have cave pictures or T-Shirts. What a missed opportunity!
This was so cool, so much fun. I thought I might be afraid at first but I wasnât. I just followed instructions and went.
Sometimes they told us to brake. We did that with the right hand, which was always on the upper cable.
After the second line, I must have braked too soon because I stopped before I got to the platform. Michael was headed toward me. The guide on the end of the platform wanted me to do some hand over hand maneuver but I couldnât figure out what he was saying so he came and got me by wrapping his legs around me and pulling me to the platform.
After that, no more problems with braking!
The next platform was very high â over 70 feet in the air â and the climb up was difficult. It was very hot and the rocks were very uneven. I donât know that I would have gotten to the next platform if Michael hadnât cheered me on all the way.
We zipped down the next six lines up to 250-feet between platforms and 85-feet high in the trees, at canopy level. It seemed like it was all over too soon.
But, I did it! No fear, just fun.
Enough of adventures – fun ones like these, and scary ones like transsphenoidal surgery and radical nephrectomy!
As part of this year’s Cushing’s Awareness Challenge, I’ve decided to share our Interview Series again since there was lots of great info in there.
The series is still going on, so if you’d like to be a part of this, just let me know.  You can fill out this form and check off that you want to do an interview – Add Your Bio
There are currently 89 interviews in our series. Â This is the first one:
Interview with Mary O’Connor (MaryO), founder of Cushings-Help.com and 20-year pituitary Cushing’s Survivor. Robin (staticnrg) hosted.
This is the first podcast I have listened to. How wonderful to hear your voices! Thank you Mary for sharing your story and for Robin for being the perfect host. This is a wonderful way of hearing about many of our journies with this awful disease – just brilliant!
Great topic……more awareness is needed as I’m convinced this is under-diagnoised vs. uncommon!!
The information age and innovative thinking meets new medical needs
Great show. informative and potentially life saving
What do you do for self care? Please tell me in the comments.
