I've been getting some emails asking about my days, my life, how Cushing's affects me, etc. So, I thought I'd try to elaborate a little.
The blare of the alarm clock wakes me each weekday morning for 90% of the year. I set it for at least 2 hours before I have to go out the door because it takes me one hour to combat the pain and nausea most mornings, and another hour to have my coffee and get ready. I have to do the first in order to do the latter. If I have an early morning meeting, then I set it even earlier. I'm always up by 5:30 a.m. and often 5 a.m.
Many mornings I can't even get out of bed until I take the hydrocortisone I both love and hate. It's a drug that replaces the "drug" my body over-zealously made for 20+ years of my life. Since surgery to remove the culprit, a pituitary adenoma, I have to partially regulate it myself. For the first year after surgery, my pituitary basically didn't function. Now, it seems to be producing some ACTH, although not much. Since I've weaned from 25 mg of hydro daily to 5 mg daily (for the most part), it does make enough to keep my natural serum levels to about a 6-something in mcg/dL throughout the day. The normal range in the morning varies by lab but is around 12-24 mcg/dL. Obviously my morning value is too low. Thus the nausea, a side-effect of low cortisol.
Back to that alarm clock... I reach to turn it off and by doing so, gauge whether I am able to get up and eat something before taking the hydro so my stomach won't hurt or if I'm going to have to take some from the bottle on the nightstand. If I can roll over and turn it off within a few seconds, I know I'll be able to make it to the kitchen for the stomach buffering food first. If rolling over is painful and sitting up almost impossible, then I know reaching that bottle close by is a challenging effort and I'm going to have to wait another 20-30 minutes to get up. This is risky because I can easily fall back asleep waiting on the relief, thus oversleeping. Not good if one wants to keep one's job.
Once I do make it to the kitchen, I grab a low-carb yogurt to waylay the stomach problems from the hydro and force myself to eat at least 2-3 bites while fighting the nausea. It's a catch-22. I'm nauseous because I need the hydro, but in my nausea, eating anything so I can take it is difficult. Thankfully, most days the nausea isn't terribly bad. Just yucky.
Once that is done, I wait for the miracle to work. Eventually, I make coffee and peruse the various sites I find interesting on the 'net. I need to take my thyroid meds on an empty stomach, but with the change from all T4 (Levoxyl) to a combination of Armour and Levoxyl, I take them twice a day. And I must have enough hydro to prevent adrenal insufficiency (AI) when I take the thyroid meds because they do require sufficient cortisol to work and can increase AI problems. So, taking them on an empty stomach is just about impossible. I take them an hour after I have taken my hydro with the 2-3 bites of yogurt, and then prepare my growth hormone injection. A quick jab in some abdominal fat and it is administered.
If I'm having a "good" day, I move with relative ease while taking a shower, drying and styling hair, and getting dressed. If I'm having a "bad" day, every movement is painful and fatigue is dogging me. This is when I have to judge whether I need more hydro or if it is something else. Generally, if the nausea has abated I go with the "something else". The exception to that rule is when I get the cold and shivering and/or dizziness that comes with AI; then, I don't take the risk. That is one time I know I don't want to have too little.
Before getting dressed, I apply the oestrogel to my inside arms that replaces my non-existent estradiol. And I apply the testosterone gel to my thighs that replaces my non-existent testosterone.
Sometimes I can get ready, even with make-up, in less than thirty minutes. Other times, two hours is not long enough because something as simple as putting on a bra or a pair of socks is tiring and painful. Since surgery, I have more of the easy days than I used to. For several months last spring and summer, I had them most of the time. Now, that's changed, and we aren't sure why. But we (endo and I) are working on it.
We all take for granted everything the endocrine system, in its magnificent complexity, does for us. But when the natural feedback mechanisms and hormone adjustments are taken away, the complexity is no longer magnificent. It's just frustrating. And life-altering. My medic-alert bracelet stays on my arm. At least now I know what is wrong. For so many years I didn't. Frustration is too mild of a term for those years.
Back to my day. I don't have to travel very far to get to work, and my day is fairly active. Once I get home, I have another job I do from home (online) for a major software company and that takes some time. Thankfully, I can do a lot of that on the weekends. Work is often difficult if my legs don't want to work right. If they are painful and I have that "walking through mud" feeling, each step is a task, and getting from the parking lot to the building is an effort. If I don't have that feeling, I might even put a bounce or two in my step. And into more than a few other spots on my body, too, 'cause when my step bounces, they do, too. But at least I'm bouncing. It beats slogging.
By mid-afternoon my hydro has worn off, and sometimes I have a rough time. Other times I do ok and have a normal day. Frankly, what I often call normal would probably send a lot of folks to the ER or their doctor. In fact, I had a conversation with another Cushie not long ago about how we put off seeking medical advice because we overlook serious symptoms due to our "normality". We don't realize they are serious.
I always have a fleece jacket with me. My co-workers sweat while I wrap up in layers of warmth. I even have gloves with the fingertips out so I can keep my hands warm. I defy their stereotype of a sweaty obese person. I admit I probably keep them confused on many levels not having to do with that, but they are too nice to say so most of the time.
As a side note, I’ve had two hot flashes in the past year, I think, and I totally enjoyed them. One was recently at a family gathering. I ran into the room exclaiming, "I'm having a hot flash!" My grown daughters laughed at me. My mother looked horrified. I was ecstatic. The men...well, they cleared their throats and acted like they didn't hear me.
Sometime during the day I have to make time to eat and take my iron pills. My ferritin is way below normal, and I can't take it within 4 hours of my twice-daily dosing of thyroid meds. Thus, that leaves lunchtime. I tend to skip lunch which means I skip the iron. My endocrinologist just gave me down-the-road for that and I'm doing better. Thyroids don't work well without enough ferritin.
If my legs are working right, I walk before going home. If they aren't, I don't have much choice about the exercise. I love water aerobics and swimming, but have to travel 20" each way to do that and sometimes I just don't have the leftover energy to do it and be able to function the next day. It's a balancing act. Nor can I keep my body warm even with the exercise in the pool. Yes, it’s a heated pool. It’s just not warm enough for me. I shiver constantly.
Once I get home from work, I find a way to get warm. I am never warm enough. Let me clarify that. I am never warm enough until (infrequently) I get overheated and don't realize it soon enough. It's like my thermostat has no "warm". It's cold until overheated and then flashes hot. That tends to happen more in the summer in 90 degree weather. I love hot summer weather. This time of year I turn on my gas logs, put on my winter pj's and fleece robe, wrap in two polar fleece blankets, and sit by the fire. If I can wait long enough I make a cup of hot tea to go with it. Sometimes I have to get warm, first.
Eventually I crawl out of my warm cocoon to take my second dose of thyroid meds and start some dinner. I'm a big fan of fresh and frozen meats and veggies. I tend to eat simply. After I eat, I take my potassium (prescribed) and magnesium. Then it's back to the cocoon. One of my laptops is always nearby. Sometimes I'm working, programming, sometimes blogging, sometimes reading on the web or researching, and often reading a good book.
I do have a life, but I've learned to prioritize. I meet folks for dinner or other activities. I am active in some organizations. I have wonderful family. But I always need to make sure I have enough "spoons" to make it through the day and the week. I relish my weekends for the needed rest. Sometimes I have to come home and go straight to bed before dinner. I'm out of spoons. Other times I can make it 'til bedtime and then 'til the weekend to recharge. Spontaneity, which is so much fun, is not in my life very much. I have to weigh the repercussions, make sure I have my meds with me at all times, and figure out if I can get in and out of where I'm going.
Speaking of in and out. A Cushie body isn't made for normal anything. Car seats, boothes, aisles in many places, and parking spaces which limit door clearance are just a few of the things I have to think through before attempting a task. Most bathrooms are handicap-accessible, although I have resisted being labeled that and don't have a tag or sticker. I fully intend to get better and not need it.
I do routine bloodwork at a local lab for my hormones, electrolytes and other "stuff" every couple of months. This means I go into work a little late and withhold my meds until the bloodwork is done. 9-10 vials is the norm. Finding veins is a task they flip to NOT do with me at the lab. I’m the dreaded one. They do like my teasing and jokes, though. I even get hugs. But they hate my veins. Sigh… Sadly, I often have to explain how to do some of the testing which is time and temperature sensitive. I wait for a weekend to do a 24-hour urine although I've learned how to do it at work if necessary. Small coolers are a Cushie's best friend. That and a "hat".
Every Saturday I take a large dose of Vitamin D3. Sometimes I forget so I take it Sunday. I do better with routine and my body feels better when I keep the same routine with my meds.
Why do I need so many replacements? I have panhypopituitarism. I had it before surgery. The tumor suppressed my pituitary for so many years it quit functioning properly. My thyroid got a double whammy, though. I also have high and increasing anti-TPO since surgery which means my body is essentially attacking my thyroid. The high cortisol from Cushing's probably masked this prior to surgery.
Today started off fairly easily. Tonight I fight nausea, pain, freezing, and fatigue. I'm not complaining. It's just how it is. Any infection, stress, or unknown factor can change my endocrine needs. Since my body can't tell itself how to cope, it's my job to figure it out and modify as needed. Adrenal insufficiency lurks nearby out of necessity because for me, the alternative is Cushing's. I’m thankful I do have some adrenal function. Those with bilateral adrenalectomies do not.
I worked with a bright, young man today who is bound to a wheelchair due to a fight with a cancerous tumor of the spine. He never complains, is always cheerful, and he finds the joy in life. He reminds me coping is 99% attitude. Gotta love that attitude.
I strive to find the blessings in each day. I sometimes forget that when I get angry. I’m trying to do better. However, I find having any attitude is better than the apathy and depression of Cushing's. My dad says I have my spunk back. That's a nice way of saying I'm a pain in the arse sometimes.
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