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And Here We Go Again

It is now 2017. Many things have happened in my life since I had previously claimed that I would be making no more updates to this site. At the age of 35 (in 2013), my husband and I began discussing plans for permanent birth control and those discussions ultimately led to us choosing to have more children. I gave birth to a beautiful baby boy in December of 2013, and a beautiful baby girl in July of 2016. I am somewhat amused to share this, since I previously said I did not plan to have more children after my return to fertility following treatment of Cushing’s Disease. Nonetheless, I now have 4 children in total; ages 19, 15, 3, and 7 months!

I had become quite a gym rat over the years until my son came along. As you can imagine, having a new little one at home makes it difficult to find time for working out, and even when there is time, who wants to ditch your little one to go to the gym? As a result, I had gained back a little weight, but not enough to be alarming. I was still very pleased with my appearance and my health, and happily accepted the 10 extra pounds in exchange for my little boy. When I became pregnant again, two years later, it had been a long time since I worried about my weight, and I had a bit of pudge from the start of the pregnancy. I felt certain it was just the change in lifestyle. Still, with the health and well being of a little one growing inside of me, I decided that it would be prudent to have my cortisol checked…just to confirm that my little bit of extra belly was the result of my own doing. I had not had any labs done for years, so even though I am sure the doctors believed all was well, they happily obliged me with some testing. My cortisol came back at 25, which was only slightly above the high end of normal. Any result below 50 is still considered acceptable. Additionally, the doctors explained that pregnancy is a stressor on the body, so they felt that a level of 25 was very good. With the reassurance of these results, I continued my pregnancy without any further thoughts of Cushing’s Disease.

As one would expect, after delivering my second baby in two years, now 39 years old, I held onto the baby weight a little longer than I had hoped. While I only gained twenty-four pounds in total during my last pregnancy, I only ever lost ten. Again, in my delight over having two new bundles of sunshine, I felt the extra pounds were no biggie. I also knew the weight was going to hang around, as I had even less time to entertain the idea of working out than I did before. I was still stuck in maternity pants five months after delivery with no relief in sight. I decided it was time to replace the wardrobe…a ritual that was becoming all to familiar. The final verdict…size 8. That was quite a bit to hold onto after being size 4 for a few years…but again…totally worth my babies!

At the same time, when one experiences something like Cushing’s Disease, there is always a little voice in the back of your head that makes you question every little thing that is reminiscent of the experience. Was it my imagination, or was it getting a little cushy between my should blades again? Was it my imagination, or was I a little padded around the collar bone? I knew that I did not have this during my pregnancy, and it wasn’t baby weight. I had my cortisol tested less than a year ago, probably unnecessarily. I was nursing my daughter, and had not resumed my periods, so that was no longer a useful indicator of my hormonal health. Was it time for me to just leave well enough alone? I passed it off as just being paranoid and decided it was time to get serious about eating better again, even if I didn’t have time for exercise. A few weeks later, it happened. I put on jeans that I had recently bought…jeans that I bought post baby…to accommodate my post baby belly…and I could not button them. I started pulling out the photo albums to double check what my face looked like when I was pregnant with my son and when I was pregnant with my daughter. It seemed that my face had been notably slender during both times. The rounding of my face was not pregnancy weight gain, it had begun after and I knew it was time to make the call.

As I suspected, the lab work indicated high cortisol. The urine test came back in the 120s, the blood work indicated high cortisol, and 2 of the 3 saliva tests came back high. A few weeks later, an MRI at John Hopkins confirmed the recurrence of a pituitary tumor. I opted to stop nursing my 5 month old infant, as I was reading mixed reviews about how excessive cortisol exposure during infancy may or may not affect her. The fact was, it was being passed to her, and with the rest of the facts being hit or miss, I felt it was safer to just call it quits. This was very disheartening to me, as I have always placed high value on providing my children with the health benefits of breastfeeding…and now I had to wonder if I had been poisoning my daughter instead. I know, I know…probably unnecessarily dramatic, but I wasn’t giving her the \”liquid gold\” that I intended to.

The confirmation of my tumor came on December 23rd, and the earliest surgical consult I could get was March 23rd. So now I wait…and wait…and wait. I haven’t even weighed myself this time. I don’t own a scale anymore, and I really don’t care. I will get a weight before my surgery, but I really don’t know what it is right now. I do know that I am borrowing size 10 pants from family and friends rather than wasting money on more clothes. I know I am seeing the changes more an more as the weeks go by. The slightest side burns are back. The back pain is back. It is still very mild and I would not think anything of it if I did not know why it was there. I go from feeling very sleepy to being wide awake at the time I would like to go to bed. I wonder if it is all still in my head. Am I looking for symptoms just because I know what it looks like? I don’t think I am.

All in all, I feel very apathetic about it this time. The first time, I was ecstatic that a cure was on the way. Later, when I had my false alarm, I was angry that the odds of full recovery were no longer in my favor. Now, I just want to shrug my shoulders and see what happens. As I mentioned earlier, my odds of recovery after the first surgery were 90%. Now, I can only hope to be on the right side of 50/50. I feel like there is no sense in stressing over it. It will either work or it won’t. I am not thrilled about the idea of maybe someday having to radiate my pituitary gland and/or the idea removing other important parts of my body, so I really am hoping it works. However, even if a second surgery appears to be successful, it will be impossible to be excited, relieved, or grateful if it does appear that I am cured (again). The reality of recurrence is now part of my journey…so can I ever really say that I am cured? Guess not.

I wish I could end on a more positive note. Over the years, I have received many emails of appreciation from others who are traveling this journey who found hope and inspiration in reading my story of recovery. I did not want to add this page, as I did not want to take that away from anyone. However, my husband kept nudging me to keep this thing going online, and it is what it is. It is my hope that I can return in the future with further updates that you will find encouraging and uplifting. Until then…

The Finished Work
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The Finished Work

Less than two years into my recovery, I was informed by my local hospital that a recent MRI (performed for reasons apparently unrelated to Cushing’s Disease) indicated a recurrence of my pituitary tumor. I read over the MRI report that provided measurements of a soft tissue mass just over 4 by 6 millimeters. My emotions shifted rapidly from an initial anger and frustration to an apathetic acceptance that this was my ongoing journey. After a short time, I was no longer upset but instead began plotting and planning how this news was going to affect my life. I pondered things like when would be the best six weeks to take off school so I could add the summer break to my recovery again, and how could I still plan to finish my graduate program on schedule this semester. Many similar task oriented thoughts swirled around in my head as a waited for my visit at Johns Hopkins.

I also began to accept the notion that my long-term prognosis just took a nose-dive. I just went from having a 90% chance of life long recovery to a 50% chance. I felt very sure that I had youth on my side and I could undergo a second surgery expecting to bounce back quickly. Yet at the same time, I began to make peace with the idea that adverse effects from Cushing’s Disease could very well be the route by which I exit this world in the extended future.

I shared my news with friends, family, co-workers and my church, rallying as much support and prayers as I could. Belonging to a church where the pastors place high value on health and healing, I had mixed feelings about what I knew they were going to say. I always felt they were well meaning, but maybe a bit out of touch with the stark reality of my having a potentially life threatening disease. I knew they wouldn’t hear it when I shared that my best chance of successful treatment had just been tossed to the wind with this new recurrence. As I expected, they basically told me that I had nothing to worry about. I can still hear Pastor Cathy and Pastor Dave saying, “There are no tumors in the kingdom, and you just need to declare that and receive it.” On one hand, I was a little irritated; because I clearly did have a tumor 18 months ago…were they saying that I wasn’t in the kingdom then? Still, I knew they meant every word they were saying with love and a passionate faith, so I continued sharing my fear and concern with both of our pastors, knowing that I wasn’t in full agreement with their words but still wanting to hear them anyway. Every time, the message was the same: that I didn’t have to ask to be healed, that it was done, that all I needed to do was receive it and declare it in faith. I continued listening and loving the sound of it, but at that point, never felt bold enough to say it out loud. I didn’t want my faith in God to be compromised by being let down if I took such a leap of faith. If I said those words, yet continued to receive continued confirmation from doctors that I was experiencing this reoccurrence, how destructive that would be the credibility of all the comforting words that I was trying to absorb.

Still, it weighed heavily on me that I needed to proclaim faith in the situation, to step out in boldness. I just felt like I had to, as though if I did not, I would be saying to God that I didn’t need him…and I knew that wasn’t true. The day before my appointments at John’s Hopkins, I posted to my friends and family via facebook, the words that seemed frighteningly bold. I urged everyone to continue praying for me, but this time, specifically that the tumor simply be gone. It would have been easy to pray for a successful surgery and maybe even easy to pray that I never have another recurrence after this. It was hard to pray for the tumor to simply be gone, but I felt a rush of confident faith when I hit the “send” button. I said the same prayer myself as I crawled into bed.

The next day, I saw two doctors at Johns Hopkins: the neurosurgeon first and the endocrinologist for a separate appointment shortly thereafter. Both doctors did their exams, looked through my organized binder that had contained the past year and half’s medical records and lab work, and reviewed my multiple MRIs. Both doctors stated that their best advice for me was to stop having MRIs! They further explained that an MRI should never have been used to predict a pituitary tumor in my case. Due to permanent, post surgical changes in the gland, both doctors agreed that an MRI is bound to always show abnormalities. I inquired of the neurosurgeon, what he thought about my facial spasms that led local doctors to order the MRI in the first place. He assured me that if it was a one time event that resolved on its own with no other consequence, he would advise me not to even worry about it.

I couldn’t wait to go back and tell everyone the news. Maybe I never had a tumor. BUT….maybe this day was proof that bold faith in God did allow me to receive a healing that I might have rejected had I not been encouraged to accept it in faith. I have to wonder if I had not stepped out and spoken what I wanted as though it was a done deal, would the story have ended the same way. Before I left Johns Hopkins, the endocrinologist sent me home with a two-day saliva test that is supposed to be more sensitive for cortisol testing than the blood tests and urine tests I had already done. He has said quite plainly that I had no reason to be concerned, so I think he only gave the test just to have one more indicator of a clean bill of health. However, I don’t think I need it. I believe that I have all I need in knowing that God has already healed me. I think that I will not take the test, just as a proclamation of my faith and confidence that I can rest in what is already done! That being said, I do not anticipate adding any additional articles to this website. I will consider it a finished work, and hope that someone not only find some information, but maybe a little inspiration too. Thank you God for the chance to share a little faith with the world!

Hello Cushing’s My Friend, We Meet Again So Soon?
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Hello Cushing’s My Friend, We Meet Again So Soon?

Well, it is December 2011…one year and nine months after my surgery, and my journey still continues. My adrenal axis made its full recovery as suspected just a few weeks after I had made my previous entry. My first major test of my adrenal system occurred when I had some impacted wisdom teeth removed in August. I did not have the procedure because the teeth bothered me, but rather just in case I ever need to take osteoporosis meds. It has been documented that really scary things can happen if you experience jaw trauma while on those meds. I was advised to take some cortisol after the surgical procedure as a “just in case” stress dose even though I had not taken any synthetic cortisol for months. I could tell after the first day that I didn’t need them, so I didn’t take them the second day. As a result, I was feeling pretty good about the stability of the recovery of my adrenals. In October, I totaled my car, suffering only minor injuries…some big bruises and headache for about half of a day. I was cleared at the ER as not requiring any treatment. I felt this was the ultimate test of my ability to produce cortisol. Certainly this was a stressful event, and I never felt the physical sensation of needing a stress dose of cortisol. I was also really pleased when it occurred to me that despite a few horrendous bruises, nothing was broken…giving me hope that my bones might not be in too bad of shape.

One day in November, as I sat eating my lunch at work, I noticed a very slight tremor in my hand. I knew I was both cold and hungry, and I thought maybe either one of those things could be causing my hand to shake. Still, I could not get past the thought that my hands had not shaken since my tumor had been removed just over a year and a half ago. Over the previous weeks, I had been toying with thoughts that I wasn’t always sleeping as well, and even that the sides of my face were looking ever so slightly fuzzy. I had blown off those thoughts as simply being paranoid. Still, as my hand continued to shake, I couldn’t stand it. I left my lunch to go call the doctor and ask for a cortisol test. A blood test was ordered, and I got a call a week later that my results were normal.

As is my custom, I had another strange, unexplainable medical event in November. I had been thinking for a few weeks that something looked strange about my face, that somehow it was not really symmetrical. It seemed to me that my left side of my face just looked older than the right. The difference was very subtle, and I wondered again if I was just being weird. Still, I felt as though if my face always looked that way, I wouldn’t suddenly start looking at myself in the mirror, trying to decide if I looked normal. I decided ultimately that my face had been changing for years, and that perhaps I just had to accept that it might come out looking different than what I am used to. Then, one day, I caught myself in the mirror and noticed that my smile did not look right. It seemed lazy on one side, and kind of crooked. Since it was after normal office hours, and I wanted an answer right away, I went to the emergency room. When I first arrived, Bell ’s Palsy was the first suspicion. During my wait, I felt that it was getting worse. It also seemed to “come and go.” My husband arrived and confirmed for me that it looked worse. As I continued to wait for the doctor to return, it got so bad that I could not talk right. I could feel a severe droop at the corner of my mouth, and I talked like I had a fat lip. Then it would go away and come back every few minutes. Feeling antsy, and I got up to find a mirror and see for myself. Sure enough, I could see my lip hanging at the corner, and there was nothing I could do to fix it. I bumped into the doctor on my way back to the room, and was glad to be able to show him before it returned to normal again. This cycle continued over the next hour. The doctor indicated that it could not be Bell’s Palsy or it would not wax and wane. The same was true for any symptoms of mini-stroke, but he did the CAT scan just in case. He also tested my electrolytes and tested for Lyme’s Disease. Everything came back normal. In the end, he gave my Benadryl to relax my facial muscles, and sent me home. He impressed upon me that it was important that I see my family doctor the very next day, even if it cleared up. My family doctor was on vacation, so I saw a different doctor from the practice. He seemed stumped and decided to do an MRI just because of my history. I didn’t get the feeling that he expected to find anything. I felt more like he was getting the MRI just so we could cross it off the list. In the meantime, I didn’t have any more episodes with my face.

I was at work the day I got the phone call. I was worried when I got pulled out of my classroom to take the phone call. Normally, I just get a message stating that my doctor has called, or even an email from my husband to convey a message. I have never been pulled from teaching for a phone call. The doctor proceeded to explain that the MRI showed a tumor and that I needed to get back in to see my regular doctor and begin the referral process. He hypothesized that perhaps the tumor had been pressing on a facial nerve which may have resulted in the episodes. I quickly asked him if the tumor was large, because I had never had that symptom, nor had I ever heard of it. He told me it was not large and again, I felt like there wasn’t any real rhyme or reason to why it had happened. As I hung up the phone, I knew I had to get my composure together to get back to my classroom. A little boy had been in the middle of reading to me when I left, and I told him I would be right back. Still, as I made my way back down the hallway, I knew I wasn’t ready to go back to my classroom. I went to the guidance counselor’s office and asked her to take my class for a while, and told her what I had found out. She left quickly to take my kids and I sat there alone in her office with my thoughts. It was only a moment before another teacher came in. I knew she had come just to see me when she hugged me without saying a word. I couldn’t help but cry. As I talked to her, my whole body started shaking. I recalled how happy I had been the first time to hear that I had a tumor…that they were going to take it away and everything was going to be okay again. Last time, it was the solution. This time, it was just a problem. What was going to happen with my osteoporosis? The more I talked, the more my cool composure broke down, and I knew I couldn’t go back to my classroom. Miss Beth reassured me that I should go home and not to worry about my class. I snuck off to the computer lab to polish off some sub plans, and go tell my husband the news.

That was a Friday, and on Monday, I saw my regular doctor again. He was in agreement with me that I should go to Johns Hopkins this time, because they have a pituitary center. Had I realized this the first time, I think I would have gone there instead of Hershey. I had always thought of Hershey Medical Center as being the gold standard of a hospital for handling serious problems, so I never questioned it before. I do not mean to imply that Hershey is to blame. In fact, I have ample data to confirm that my original tumor was successfully removed. I just feel like this is my second crack at this thing, and it may be my last chance to take care of it with the transphenoidal surgery. It seems a no brainer to insist on a pituitary center. My first visit with Johns Hopkins will be on January 19, 2012…less than two years after my first surgery. I am currently 108 pounds, size 4 and I have been so for several months. Presently, I have no obvious signs of Cushing’s Disease. I have some patchy dry skin…could it be cortisol related…is it a coincidence…who knows? I am waiting on the results of my 24 hour urine test that will give more specific information about my current cortisol levels. My family doctor said that is what he should have ordered before telling me that my cortisol was normal (the day that I called about my shaky hands). I guess I will give him credit for being on vacation, and for receiving my message second hand when I called and requested the test.

All in all, I feel very lucky to have discovered the tumor early this time. I have so many questions. Will they treat me right away since I have a definite history of Cushing’s disease? Will they make me wait since I am not yet being harmed by the tumor? If they treat me early, can I assume that I will be spared the steroid withdrawl that was so miserable the first time? Is the tumor really the reason that my face started spasming, or was that some kind of coincidence? Could it be that I have two different things wrong with me, and the doctors will miss one just because the Cushing’s Disease is powerful enough to overshadow everything else? Of course, I won’t know any of these answers for three more weeks. What I do know is that God will not let this end badly for me. I have faith that he’s got my back. I am not sure what my journey will be, but I know that a great number of people are praying for me. I believe that in the end, I will be able to point to my experience as an example of how God stuck by me during a trying time, and how only faith in him will be what healed me. I have great respect and gratitude for modern medicine, and I do give great credit to the doctors who have the knowledge and expertise to take care of me. Still, I have seen from my experience that doctors can remove my tumor, but God will be the one who has the power to keep it away. I have confidence that is how my story will end.

FYI…I got the call today (December 27, 2011)…my cortisol is normal…13.3. Normal range is 4-50. Guess that means I am still normal aside from a tumor in my head!

May 2011… Birthday Cortisol?
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May 2011… Birthday Cortisol?

Some weeks have passed since I previously thought I had concluded my Cushing’s Disease story. I got quite a nice birthday surprise this month. One year and two months after my brain surgery, I have received my first confirmation of normal cortisol levels (off meds). My results were around a 10. In my elation, I removed my medic alert bracelet for the first time while spending my birthday party with my family. I chose to keep the bracelet as my commemoration of all that I have been through. I took the little paper from inside the bracelet that labeled me as adrenal insufficient, and dropped it in the “joy basket” at our church where our tithes and offerings are placed, after giving a special thanks to God for allowing me to experience a complete recovery. My elation had been somewhat stifled by a virus that I did not realize I was fighting off. Within days of learning that my hormones were normal, I had a nagging headache for nearly a week as I reduced my meds to only 5 milligrams, expecting to be down to zero very soon. I knew the headaches meant I needed more cortisol, but I didn’t want to accept it. How could I need the same amount of meds with normal blood work as I needed when my cortisol was dangerously low? Was I stupid to take off that medic alert bracelet? Should I go buy a new one? Should I take back all of my gleeful announcements of recovery that I had made to the world, to my family, to my co-workers, to my church, and to everyone on facebook? Things made more sense when I woke up with a sore throat after nearly a week of feeling miserable, and I realized that maybe my cortisol was only normal on a good day; that if I was getting sick, perhaps that was taxing my newly recovering adrenal system. It turns out I was correct. I am back up to 20 milligrams of synthetic steroids almost immediately after believing I would soon no longer need them. This is only a stress dose, and I should be able to go back down to 5 milligrams very quickly…again moving toward zero. I know this is a minor set-back and that all of the wheels are in motion for my full recovery. I have decided that I will not replace my medic alert bracelet despite the fact that my adrenal system is vulnerable to illness. I already thanked God for curing my adrenal system, and I will not take it back. Again, I feel kind of like that crazy person with osteoporosis on roller skates…not sure I am doing the right thing, but feeling alive. Anyway, thanks to anyone who was interested enough to read all of this. I know it is long, but it has been a long journey for me. If there is one person searching for an answer, who finds it in my testimony, I will be pleased.

Getting Back To Normal
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Getting Back To Normal

It is now, April of 2011, one year and one month since I had a tumor removed from my pituitary gland. My hump is gone, my face is thinner than I ever remembered that it was, my facial fuzzies are gone, regular deodorant works just fine, I don’t lose hair in the shower, and my blood pressure is amazing. I don’t get bruises like I used to, and my least favorite but most indisputable sign of improved health is regular periods. It occurred to me recently that for the first time in seven years, I could have more children if I wanted to. I came to the conclusion that I did not want to repeat that journey, but I am grateful that my children were born when I was young, or I would have been stuck waiting until my late thirties to be a mom. I have also lost another strange symptom. I say it is strange because I have never seen it on a published list of Cushing’s symptoms, and no doctor has confirmed it to be related. However, my hands used to shake intermittently every day, and it happened more frequently and with more intensity as my disease progressed. Amazingly, this shaking was a regular occurrence ever since I was a teenager. Even more amazingly, my hands have not shaken one time since my surgery. That means I could presume that I had my tumor since I was sixteen years old…all the while seeming perfectly healthy for nearly a decade before I even began to suspect a problem. Since my surgery, I have had three clear MRIs, and I have been cleared from further routine MRIs pending continued “normal” blood work. I put quotes around “normal,” because my adrenal axis has still not demonstrated recovery, meaning I do not produce enough cortisol to keep me safe and healthy. I rely on a bottle of synthetic cortisol every day. I will never forget when my medication went on manufacturer’s back order. I had to travel to neighboring towns, three months in a row…taking the last of what each pharmacy had on their shelves. As I began to worry about the continued difficulty of obtaining my life-sustaining medicine, I began to feel fearfully vulnerable. I realized that if there were some great catastrophic emergency like an earthquake, or if I got lost in the woods, or some other crazy event; that I could potentially survive the event, and die if I couldn’t get my meds. I know that sounds dramatic, especially since I later found out that prednisone could perform the same function. Nonetheless, I began to contemplate life and death more in regard to my medicine than I did in regard to brain surgery. Thankfully, after a few months, my cortisol meds became readily available again. In my mind, I will not consider myself cured from Cushing’s Disease until I no longer need medicine to stay alive. I know that there is a 90% chance that my pituitary/adrenal axis will recover. However, I know there is a 10% chance that it will not. Each testing time, I feel more and more normal when my meds are tapered for the test. I am currently waiting for blood results as I type. At this time I have resumed my 10mg dose, waiting for the call. I was pretty sure my results would be good this time, until yesterday when I felt that yucky feeling in my head again. It was as though I could feel every step I took inside of my head. I took a little extra cortisol (above my 10mg dose) to feel better again, longing for the day that I can just wake up with the hormones I am supposed to have.

Another lingering effect from Cushing’s Disease that I may or may not live with forever, is osteoporosis. Imagine, 33 years old and diagnosed with osteoporosis. I wonder: if I have it now, how weak will my body be when I am 50, 60, 70 or older? I remember how I cried when I heard this. I never cried when I heard I had a tumor or when I was told that I needed brain surgery. Regarding the tumor, I only felt relieved and even excited. I was going to be fixed. This diagnosis was different. I felt like I could never be normal again. Could I still go to the gym? Could I wrestle with my kids? Might I fall down the steps and break my hip like an old woman? Things didn’t look better when I began to read about the medications for treating osteoporosis. In fact, I grew even more infuriated. I was diagnosed in April of 2010, one month after the FDA issued severe warnings against using popular osteoporosis medications unnecessarily. They were thought to cause increased risks of certain kinds of fractures and severe bone pain. It made no sense. It sounded like the meds could cause exactly what we were trying to prevent. What did it matter if I was going to fracture my femur instead of my hip? Besides, I was having enough pain already. My shoulder and fingers will still causing me daily pain. Why should I take pills that would cause severe bone pain too? Anger boiled inside me for all of the doctors who knew I wasn’t getting a period for all those years. I was in my early twenties at the time (young and clueless), and I had not taken the time to understand how all of my hormones worked together and how this would affect my bones. However, my doctors should have known. When they said it was okay, I trusted them. It was their job to protect me. How could I spend the rest of my life wasting away, while they never even prescribed calcium and vitamin D? I am not sure if it would have mattered, since I think my issue was not lack of nutrients, but rather an inability to absorb them. Still, I felt those people had cost me my life as I knew it.

After much research I found a few articles that indicated the Cushing’s patients could experience improvement in symptoms of osteoporosis. My hope was that I could experience that recovery without medications. It made sense to me. My body could now absorb calcium and vitamin D (and who knows what else) properly for the first time in at least seven years. I reasoned that the human body is constantly rebuilding and repairing damaged cells, so why not my bones? Now that my body was not working against itself, perhaps time to grow might be all that I would need. I opted not to take osteoporosis medications, at least for now. I have to wait one more year (two in total) for another bone scan to see if any positive change has occurred. In the meantime, I have continued to go to the gym and do what I have always done. I figure my body’s capability for doing what I do each day is no worse than it was the day before I found out that I had osteoporosis. Besides, I know that weight bearing exercise can help a body grow stronger, and that is exactly what I need. I have gradually resumed doing all the things that I read that I should not do, like jogging, jump roping, and playing tennis. I even roller skated with my kids a few weeks ago, after sitting out of several parties. I felt stupid, knowing that one fall could change my life. But at the same time, I felt liberated, like I wasn’t giving up my life yet. I did fall twice, and I jumped right back up without any trouble. I am not sure I would do it again, because I felt like a nervous rebellious child inside the whole time, envisioning myself having to explain why I made such a stupid choice, envisioning trying to chase kindergarten kids around on crutches. However, for that one night, I am glad I did it.

My arm is mostly better. Before it was all said and done, I learned that my real problem was in my shoulder. I was given a steroid shot, and several months of physical therapy. While I improved enough to brush my own hair, I still experienced sudden severe pain if I moved my arm the wrong way. I eventually gave up physical therapy, and I think that was what has helped the most. I wonder if my shoulder didn’t need rest more than therapy. I continued to include shoulder exercises in my routine at the gym, but only once or twice a week for a few minutes instead of for an hour at a time. I still have occasional quick, sharp pains. However, now it so infrequent, I feel certain that this will not be something I will have for the rest of my life like I had initially feared after a year of pain. My fingers are the same way. They still don’t seem to bend the whole way as soon as I wake up. However, now, by the time I walk to my bedroom door in the morning and reach for the door knob, I can wrap my fingers around, and by the time I walk down the hall, my fingers feel perfectly normal.

I have one more strange thing called “Raynaud’s Phenomenon” that is new to me this year. When my fingers get cold, two of them turn yellow and somewhat numb. It lasts for 5-10 minutes and goes away. There doesn’t seem to be much that can be done about it. I am not sure if it is related to Cushing’s Disease or cortisol or anything else I have been through, or if it is just a coincidence. Doctors are not suspecting any link. Nonetheless, I always wonder if everything that happens to me physically might be because of Cushing’s Disease or adrenal insufficiency (lack of cortisol).

Speaking of that wondering, I even worry that my Cushing’s Disease is back every time I feel any of the symptoms that were part of the Cushing’s Disease package. For example, I have been having trouble sleeping off and on for the past two weeks. I am wide awake until midnight, even though I get up at 6:00 AM. I have woken up a few times in the middle of the night. My back was hurting to sit at the table this evening, and I remembered how it used to hurt before I knew I was sick. Worse yet, I had trouble buttoning up my new pants last week. When I looked in the mirror, by belly was popping out and the slim me that I had gotten used to seeing, seemed compromised. I weighed myself and was 118 pounds. Small yes, but still 3 pounds more than I had been the week before. What if my tumor was back? Would I have second surgery? Should I just quit my job and enjoy my life while I still have one? Why did I give away all of my size 8, 10, 12, and 14 pants! I crawled into bed trying to remind myself that I had just had a clear MRI this month. I fought off the urge to remind myself that my original tumor had supposedly been unidentifiable on the MRI prior to my surgery. I tried to recall if I had a period this month, but I couldn’t remember. I had stopped keeping track after a while…how stupid in my condition. To my relief, I woke up in the morning back to my normal size, and looking good in my jeans again. I chalked it up to being bloated. I guess that happens to normal women. It was just another example of how Cushing’s Disease will never leave me completely.

Some positive things have come about from my experience with Cushing’s Disease. For one, I treat my body better than I did as a teenager and young adult, and probably better than I would if I had never had health problems. Healthy diet and exercise have become a habit for me over my years of struggle. Additionally, I have become more proactive and responsible for my health. While I am grateful for doctors and science, and I know I would be dead or dying without them; I have learned that I know my body. It is no longer enough for a doctor to tell me what is and isn’t wrong with me. I know that just because they know more than I do, they do not know everything, and that it is my obligation to look out for myself. Just because a doctor doesn’t know what is wrong, doesn’t mean nothing is wrong. Finally, I have learned that I am vulnerable. I know that doesn’t sound like a positive thing, but I guess it can be. I know my health is not guaranteed, my time is precious, and there are a lot of things in life that aren’t really that important.

Recovering From Cushing’s Disease
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Recovering From Cushing’s Disease

My tumor was removed on a Thursday, and I went home early on Saturday. I was surprised to be going home so early. I had only begun to be able to use the bathroom alone, and I felt very weak and groggy. My six weeks of recovery had begun. The nasal congestion had become increasingly problematic for me. I still wonder if I did not get a cold during that same time. I was so stuffed up, I could not breathe. I had to take hot showers several times a day just to get some steam into my airways. I was forcing up phlegm from my throat just to feel like I could breathe, all the while praying that the pressure from doing so was not going hurt something in my brain. I had been clearly told not to sneeze, so was it safe to struggle with all this congestion? All of this was very scary for me. I called the on-call neurosurgeon, but he didn’t seem concerned. My third day at home, I got the worst headache I have ever had in my life. This time, it did not seem to improve with medication. I might not have been worried if this had happened in the hospital. However, I was now at home, and out of nowhere, I was in horrible pain. I was certain that something was wrong. I called the on-call neurosurgeon at Hershey Medical Center again. He advised me to put a bag of ice on my face to see if that would help. I was irate. Was he for real? Feeling helpless, I put a bag of ice over my face, feeling certain I would be in the ER by the end of the night. I had visions of being life-lined to Hershey, wondering if my local hospital would be equipped to deal with my condition. Strangely, the doctor must have been right. Within an hour or two, I was okay again, and it never happened again after that.

I was off work for six weeks. I slept most of the day for nearly the entire six weeks. During this time, I would sleep in until 11:00 AM, have some lunch, and lay down for a nap by 1:00. My naps would last for hours. When I finally woke up, I could barely stay awake for dinner, and then I was ready to go back to bed for the night by 8:00. Nonetheless, I was eager to get back into good physical shape again. Two weeks after my surgery, I started trying to take walks around the neighborhood. I was surprised that I only made it for about two minutes when I had to turn around and come back home. I can’t describe how I felt during these walks. I felt almost disoriented in my head. I didn’t have a headache. I just didn’t feel right…kind of like I had been on a carnival ride, but not dizzy…just strange. I gradually built my stamina over the next couple of weeks. During the third week, I pushed myself to walk for 20 minutes, even though I collapsed for my nap as soon as I got back home. When all this started, I had planned to go back to the gym by the third week. I began to realize that wasn’t going to happen, and I was growing impatient with the fact that I had not lost any weight yet. I remember when I planned for all this time off of work, I had a long list of movies I planned to watch, extended family to visit and spend time with, and leisurely household projects I thought I would finally have time to do while I was off work. I could not believe that, three weeks into my recovery, I had only had the energy for two movies, no visits, and I had done absolutely nothing around the house. I was blessed that my family was so supportive. My children were relatively independent when they needed to be, my husband was very doting, and my mother-in-law, who lived with us, took care of nearly all of the general housework.

That third week, I began having the most terrible pain. It came out of nowhere, but everything hurt. When I got out of bed, I could not even stand up straight. It was like I had to straighten up in a series of effortful moves, like a creaky old lady who couldn’t straighten her back…for a few seconds anyway. My feet hurt like I was walking on rocks. My fingers were so tight and sore that I could not wrap my fingers around my door knob. I honestly had to use both of my flat palms to turn the door knob. These pains gradually subsided throughout the day, but never completely went away at that time. Each morning it started over again. Now, in addition to being severely tired, I wanted to stay in bed, just hoping to sleep through all this pain. My arm started to hurt so badly that I could not lift it. My daughter had to brush and blow-dry my hair. I needed help taking my shirts off. I couldn’t lift plates from shelves above my head. My husband would catch me yelping out during my sleep, only to find out that the blanket had fallen on my fingers or I had accidentally turned my arm in my sleep. Just moving was so painful. While these pains were always at their peak in the morning, they essentially started over every time I took a nap, or even sat on the couch for any length of time. I called my doctor, and was reminded that Cushing’s patients often feel worse before they feel better, and that my body was going through steroid withdraw. I protested that this didn’t make sense to me…that I was just now beginning to feel so much pain, since my steroid withdraw had begun three weeks prior. Blood work was done, and everything looked as expected, so I was left to wallow in pain. I took Tylenol sometimes, but I tried not to. I wanted to know when I was in pain, and when I wasn’t. I didn’t want to think I was better, when really it was just medicine masking what was still wrong with me. I felt like I was on a journey during which it was important for me to stay in tune with what was happening in my body.

Over the next two weeks, most (but not all) of my pains gradually decreased. I continued to have stiffness in the morning…especially in my fingers, and my arm improved very little. However, I knew I was going back to work as a kindergarten teacher in just over a week. I felt like I had to begin rebuilding my strength and stamina or I would go into shock when I went back. I tried to get up at a respectable morning time, and I tried to keep my naps less than two hours, yet was rarely successful. I returned to the gym, but I could not even look at people on the elliptical machines without feeling sick in my head. Instead, I started walking on the treadmill at a very slow pace. I remember feeling ill after ten minutes, wondering if it had even been worth the drive to the gym. Again, I went back to bed nearly as soon as I got home. I was so torn between forcing myself to be more active and the alternate of taking my last two weeks to rest and sleep all that I could. I needed to be ready to go back to work. I had really done a number on my once generous savings account by having to take four of my six weeks off work unpaid. I knew that when I returned to school there would only be two weeks left before summer vacation. I prayed that when the time came I could suffer through those two weeks, rather than lose more pay.

I lost my first couple pounds that fourth week…just two, but until then I was beginning to feel concerned that it just wasn’t going to happen. However, when it started, it happened fast. I lost anywhere from two to five pounds a week for months, and I was ecstatic as my face began to return. That being said, my face had been a Cushing’s face for so much longer than I had realized, that I had no idea how much more it was going to change in the months ahead. It was fun every few weeks to notice that my hump on my back was just a little smaller than the last time I checked. I remember how my husband and I chuckled when I could feel bone there for the first time in years.

I was right I when had predicted that those last two weeks of school were going to be rough. The children were so happy to see me back, and it felt so good to know how I was missed. Nonetheless, I think I barely made it through the days. I felt sick off and on throughout each day. I was so glad that most of the academic stuff was being wrapped up and we were entering the housekeeping phase of the end of the year. Things like field day, assemblies, movie days, and other special events took the pressure off. However, I had come back to report cards being due even though I had been off for the past six weeks. My substitute did a great job of having most things taken care of, but it was still a trial to pull everything together. Much of those last two weeks of the school year are a blur. I remember coming home each day, falling asleep almost right away, waking up to eat the dinner my husband had made, and going to bed for the night. I don’t know if I could have made it, if I hadn’t had the assurance of knowing that my time back to work would be so short. Once school was out, I went back to my routine of sleeping in, taking multi-hour naps, and going to bed early. My body aches, while less intense, still did not go away. I believe it was the beginning of August (five months after my surgery) before I finally starting being able to stay awake for most of a normal day.

On the up-side, the weight was falling off beyond my wildest expectations. The week before my surgery, I had weighed 152 pounds. I had set my dream weight at 130 pounds. It had been years since I was that size. Imagine my surprise when I stepped on the scale to find that I was 125 pounds by October! I had lost 27 pounds in seven months…six months really, if you recall that I didn’t lose any the first month. I had gotten rid of all of my clothes that were smaller than a size 8 years prior to my surgery, so I was scrambling to keep myself in decent looking clothes. Although I was still recovering financially from my time off work, new clothes were a non-negotiable expense. Believe it or not, I continued to lose weight. By spring I reached a weight of 115 pounds…a size 5! I do not think I have been that size since my first child was born, thirteen prior.