"Mom...? Are you alright?" My daughter asked with concern.
I sat up and exclaimed, "I'm alright!"
Laughter ensued as my family took a picture. I stumbled through the hallway and collapsed into bed for the night. The following day my husband showed me the photo, and I was mortified (and a bit humored) at the sight of how terrible I looked. It wasn't just that it was apparent I'd been sleeping, and my hair was going in every direction - I could see the weight gain, my swollen eyes, and chubby cheeks from the edema that was part of my daily experience during this time. I was exhausted, and this photo put into perspective the change that was happening as a result of my hormones starting to fail.
In 2016, as hypopituitarism began to set in, I experienced myriad symptoms that initially made diagnosing difficult because they were very general and common. Although my labs kept coming back in the normal range, the results were declining from my previous years and were low-normal. So the protocol was to check hormones every 3-6 months. At each appointment, I explained my symptoms to my endocrinologist, and he listened and was never dismissive of anything I told him. This was especially true when my husband gave insight into what he was seeing at home. At times I found it difficult to articulate precisely the magnitude of the symptoms I was having, so when my pituitary function began to decline, it helped when my husband joined me at my doctor appointments. During one visit, he shared the picture I described above with the doctor to get his point across.
I do not have panhypopituitarism right now, but it is expected in the coming years. I am on total thyroid replacement because my TSH is practically at zero. IGF-1 is still low at 58, and the other pituitary hormones are still being produced (to some degree). My adrenal insufficiency is mild. I only take hydrocortisone as needed right now, such as when I am ill with a fever or have surgery, which is not often. Hormone replacement has helped me tremendously, and I went from complete exhaustion and sickness to feeling 99% normal again.
A few things that aid me in this chapter of living with pituitary disease (besides the medicine):
1. Read, read, read anything I can get my hands on to learn about the pituitary gland's function. The internet is also replete with helpful videos on the gland's function. This way, I can understand what the doctor is explaining when he gives me reasons why or why not he treats me for a symptom or adjusts my medications. Patience and communication is essential. The pituitary gland is an incredible organ (!), and it is nearly impossible to replicate its function perfectly. It takes time for the medication to work.
2. Hearing or reading about another patient's experience is helpful. Support groups, whether it is online or in person, help cope with this disease. I attended a pituitary support meeting in Southern California via Facebook Live this month. Through the years, these support meetings, which are hosted by Sharmyn McGraw, Dr. Daniel Kelly, Dr. Pejman Cohan, and other doctors or professionals at the Pacific Neuroscience Institute, have provided invaluable information and support to patients regarding the treatment of all things pituitary gland tumor. It was great to participate in this meeting from out of state.
3. Running or exercising has been a good way for me to deal with stress and weight gain. Prior to my diagnosis of hypopituitary, I gained at least 20 pounds. Running is something I began to do before and after my 2011 surgery - when I had the strength to do it. Since then, I've been running off and on since then, but I'm exercising more this past year since my hormones have balanced. I've lost some weight as a result. Earlier this month, my family and I participated in a 5K:
Here is an entry in my personal journal I wrote after the event took place:
Tuesday, March 13, 2018
I participated in the BT5K event for the American Brain Tumor Association. For the past few months, I've increased my time and distance on my runs and built up enough strength to join a 5K. I've been looking forward to participating in this event for years. Unfortunately, the end didn't quite work out as I thought. I was so sore [from running] I could hardly walk the day before the event. I nursed my pulled muscles with ice packs and prayer and purchased a brace to help with the leg and back pain.
On the morning of the event, I was still sore but feeling better and determined to run with my music playlist carrying me through the event. I'd never run with a brace before, so it was a nagging distraction because it constantly inched its way up my waist, refusing to stay put during the 5K. As I neared the finish line, my playlist stopped working when I was to exert all my energy and run as fast as possible to the end. I was forced to finish with no music, exhaustion, and the heat bearing down. So I began to think of scripture (Hebrews 12:1-2, 2 Corinthians 12:9) and just prayed. I realized in the moment it was probably good the music stopped because I was more tuned into my increasingly strained muscles and didn't overdo it. Also, I could hear the cheers of the people waiting at the finish line and didn't care anymore about my time, whether I could run or walk - just that this race was over and now I could rest.I didn't consider this 5K a race but merely a way to challenge myself to beat or run/walk my usual time for 3.12 miles. My best time when I run at home is 00:38:34, but the day of the BT5K it was 00:42:09. Nevertheless, I'm grateful to have been able to run. I also wanted to support this organization and bring awareness for pituitary tumors and acromegaly. This BT5K was an inspiring event. Hundreds of people showed up to honor a loved one who has succumbed to a brain tumor or currently battling one. More information about this organization is here: abta.org
