The Journey Continues

Well hello there! I meant to update this all through my journey but that just didn't happen. I wanted to, but I got busy.  Things happened so fast, more tests, more confirmation then surgery. I had my surgery April 29, 2016 with the best Neurosurgeon in my region. The day of surgery we arrived at the hospital. Nervous but hopeful. My mom drove  hours to be with us and help with the kids as we did this. The kids went to school like any normal day after spending the night with what was our babysitter. She took them to school after I stopped by before heading to the hospital bright and early. Gave hugs and kisses and prayed. I'm not a religious person, but this day I needed prayers. Prayers for the doctors who would be performing my surgery. Prayers for waking up in recovery a new person. Prayers I would be able to see my kids beautiful faces soon. It was an emotional few days before as Id prepared myself for what was coming. This was the first time I really had a break down all through the process. It was real and it was happening. I knew that recovery would be rough, I knew that I would be ok. I knew I was in the best possible hands. Surgery went flawless and even ended alittle bit early! When I woke up in recovery I BALLED. I COULD SEE! You see going blind was a risk of the surgery. And one I feared the most. Not dying or having other major complications. I needed my sight to do my job that I was bound and determined to go back to when I was able. I could still do my job even if not at full capacity as long as I could see. The original plan for when I woke up was to be in ICU for a day maybe two. Well I was in one night and went to the neuro floor the following day where I stayed the remainder of my 4 day stint. I don't remember alot of it, but I do remember the many doctors who visited and even my doctors coming in and saying how fabulous I was already doing. They were amazed. A good friend of mine would call this my over achieving personality. I call it healing. They drew my cortisol and other blood panels daily to make sure my cortisol was dropping, and that my kidneys were working as they should. A common complication of this particular surgery is Diabetes Insipidus, So i was being watched closely for this. I was also being watched closely for a CFS leak (cerebrospinal fluid leak). To major things that could potentially keep me in the hospital longer and cause big problems in recovery. My cortisol levels started to drop from day one. They crashed on the night of day 3. Day 4 I woke up so tired. I couldn't even keep my eyes open tired. Id slept well since surgery, having vivid dreams and sleeping hard. This is something I hadn't done in so long I forgot how good it felt. Day 4 I went home, had my scripts and orders of how to take my replacement hydrocortisone. Because my body wasn't producing any cortisol at that point. I went home, I barely remember the drive as this was the day I couldn't even keep my eyes open. I got home and slept. And slept. And slept. I got up only to eat and go to the bathroom, get drinks. Just enough to avoid the other complication of blood clots. Cushies are prone to blood clots. I probably slept for at least 2 weeks. Literally. I gradually started being able to be awake for longer periods of time, started to venture out to the store. Started driving by myself, doing things and going places by myself. Up to this point I was pretty dependent on my husband to be close by. I went back to work at alittle over 4 weeks post op. I worked as a Medical Assistant and I went back full force. Luckily I had a light schedule provider and it helped me ease back in. She left soon after I was back but again I was still just on a light schedule type of arrangement. I was able to keep up, and if I needed to leave it was doable. I didn't have to leave very often but a few times I did get sick with a cold and I had to go home and rest. My body couldn't handle illness like it did before. I stayed on Hydrocortisone for about 6-7 months. During this time I weaned relatively  slow. I couldn't be weaning and being sick at work so I had to go slow as to not have to many side effects. The major ones I experienced were severe bone and muscle aches. These subsided eventually. When I got off the hydrocortisone, I experienced these aches off and on for awhile. My recovery was pretty cut and dry. I went to my endocrinologist regularly for regular blood work and urine cortisol testing. They were improving with each visit. My adrenals were starting to function! Hallelujah! I saw my neurosurgeon at 6 months post op and had my MRI which was all clear. I also visited the ENT that assisted with my surgery. I saw him every 2-4 weeks for awhile. He would suction out the crusties that would develop. He was always so amazed at how good I looked. Even with no make up and just comfy clothes. I continued daily sinus rinses for a good long time it seemed. When he finally let me go of his care, he said I could do them as needed. For awhile Id need to do them about once a week, I don't need to do them hardly ever now unless I get a cold or sinus infection. Things were rough for awhile with the pain and aches but I lived a normal life. I went to work, came home and helped my kids with whatever they needed. We have traveled, we have enjoyed this new life. I am 16 1/2 months post op now and all the health issues I developed with cushings have reversed. I am no longer diabetic, blood pressure is beautiful, cholesterol is beautiful. My hair started filling in a couple of months ago. I started working out in July of this year and that is going well. Had a rough start as Ive dealt with the aftermath of muscle weakness. I've lost a total of 50 lbs. I struggle to lose the rest of the 120ish lbs. I have some left over hormone issues that we are trying to figure out. Ive recently gone under the care of an obgyn to help me sort these out. I tried a stint of Estratest because my estrogen and testosterone was low. Affecting my sexual function. Well this proved to be not the way to go. I progressively got depressed and irritable. So we stopped that. I have always fought with depression, I go in phases and snap out of it. But since cushings, it comes crashing in like the koolaid man. It knocks me for a loop. I barely function. So we are trying an antidepressant. I am on my 5th day. First few days I couldn't sleep and had a major migraine. Those side effects are subsiding. I hope this medication can help me. So aside from some depression and the weight not wanting to come off, things are going pretty good. I have a new job now that is more beneficial to my well being, the job I had before was toxic. And over time it became very apparent that it was not good for me. If I have learned anything through all of this is that we have to keep the hope, advocate for ourselves and don't sweat the small stuff. Keep fighting fellow cushies. Life gets better. 

The Journey Has Begun

Cushing's Disease. Two words most people don't even know. They don't know what it is, or how it progresses. Who it affects. Why it happens. There are so many unknowns with this disease. Most of the known's are from personal experiences shared among fellow "cushies" on various message boards and other social media. I personally would have never even known about it had I not done a Google search for "rapid weight gain, and irregular menses." When people see "cushies" they probably see the very prime example of unhealthy. A cushing patient wants nothing more than to be healthy, but their bodies are literally working against their every effort. Cushings disease is caused by excess cortisol. The source of the excess can be from a tumor in various locations but is usually found in the pituitary gland or the adrenal glands. As vital as cortisol is to the body, having it in excess is not. Having excess cortisol can wreck amazing havok on someone. Someone who was once exceptionally healthy can go from healthy to nearly death. How long it takes varies of course but for the most part it is life threatening eventually. Slow and painful. My journey started probably about 3 or 4 years ago. Seemingly minor changes were happening. I couldn't shake a "funk" even as hard as I tried. I exercised, ate better, slept when I should. Yada yada yada. Still depressed. Winter time blues are a common thing in my neck of the woods, usually clearing up with spring and nicer weather. But it just never went away. Had good days of course but mostly the days were gray. Blah. No feelings. Nothing. Then I couldn't lose weight, the weight I maintained was slowly starting to be unmaintainable. I walked every single day. 4-5 miles most of them, lots of hills and lots of heart rate raising walks. Was not lazy by any means. Then bam I looked at something sweet and on came 5 lbs. Stopped all soda, nothing but water. and bam here comes another 5 lbs. Before I knew it I was up 40 lbs. Now I am up 110 lbs from the day I got married. All in about 18 months. The fatigue I experienced on a regular basis just got worse. and worse and worse. The depression never eased up, to the point I went and got on an anti depressant. It helped take the edge off but the underlying issue was unknown. I didn't know WHY I was depressed. Being depressed and Not knowing why is depressing. Sure putting on weight faster than I can blink is depressing too but why was it happening? My diet had become so basic, I couldn't understand. Then the hair loss started. I'd always lost some hair but it came with the territory of a low functioning thyroid. Sometimes it was connected to needing medications adjusted. Bye bye sex drive. Hello irregular periods. Hello Drs who want to just give meds for the many symptoms instead of find the root cause. For at least 2 years I thought all my "signs" were my thyroid. But my labs were all ok. Story of a hashimoto patients life. So Cushings disease was on my mind. Did my research, tried to get a few tests and got no where really fast with my primary physician. Did more research and in the back of my mind wondered could it be? Asked around for a endocrinologist and got in the following week. Within 2 weeks I had a diagnoses of Cushings Disease. I couldn't stop crying! It was such a relief to have this Dr I had only met one time listen to me, run the tests needed and is now helping me through the process of getting to surgery to remove a 5mm pituitary microadenoma. Its good to know that you aren't crazy or lazy. Its also bittersweet. So now what? What happens after surgery? How will my life change? So many unknowns. Oh and add to all this I have 2 young kids and a husband and work full time.