I’m comfortable with confrontation where most would say they are not. I don’t beat around the bush or sugarcoat things to make myself or others feel more comfortable. These are typical areas where people claim to be “out of their comfort zone.“
I called moving companies and let people into my home to survey, then move us out, then in, I offer coffee and chitchat. So much change in a moderately short amount of time. Starting the second week of August Paul was gone all week, just home on weekends until we moved on September 19th. Now he goes to work every day… after him “working from home“ for 2 1/2 years. Change doesn’t really bother me the way others talk about “hating change.” I am more than happy to try a new town, find a new home and make it feel like ours. I don’t love Paul being gone all day but until March 2020 he was at work. So it’s back to an old and familiar routine.
Of course, nobody’s perfect…
I was asked to be in a study at MGH. I want to take part in a study that may benefit other peoples lives. I know this because I lament the fact that not enough people take part in acromegaly studies. Early – mid — and on the other side of diagnosis and “remission.” There are too few studies and even less are meaningful. They just aren’t there. Since I’m a good candidate for this study because of my hypopituitaryism and use of replacement hormones they can search for answers for women with diabetes insipidus. If studying me (and many others) helps them, why would I say no? I was going to do it from Rochester and combined the trip with my brother-in-law‘s wedding but here I am back in Massachusetts.
So – where’s my discomfort?
One thing about chronic illness and needing so much flippin’ help with everything. is you lose your independence and I’ve always been very independent — it is my nature. Learning to accept help, ask for help and not feel like a burden is all part of the learning curve.
But what happens when some independence gets handed back to you?
I had to go into Boston for part one of the study. My brother-in-law currently cannot drive so he’s lending me his car. We picked it up on a Sunday. I drove it home but still needed to get used to it. I talked to Paul about taking his brothers car to work so I could drive ours. I felt nervous about driving into Boston and horrific parking at the hospital and of course not knowing the car. Can I still drive city streets? Really, five lanes merging into two then back into three… Massachusetts drivers making left-hand turns from the right lane. All things I use to do seamlessly but I am still able? Driving our car and Paul saying, “of course you can, you’ll be fine” — I felt better. And if you know Storrow Drive getting into downtown Boston you know the insanity. I did it all. I did it just fine. I was me. But leaving the apartment alone to drive and city traffic – I needed to push out of my comfort zone. I do not like when my home becomes my prison but there it is. I can break free but it’s easier not too. My life is not easy. There is always the what-if of migraine and pain. I will push my limits and cancel when necessary.
Then the next week I had one goal — go on the simplest of errands… CVS and pick up Paul’s dry cleaning. (Sidenote – we need to find an organic, scent free cleaners!). I hurt, I’m tired, I want to go out and but this little thing feels monumental yet I know it is not. I went down to the car and drove the three minutes. I was gone maybe 30 minutes. It was no big deal. I just have to do it. It’s not fear or anxiety. It’s something else. It’s being so used to isolation. It’s being use to not using my energy for the focus of driving and not having to think about it. I can get in and out of a car with Paul and just go — do stuff without a second thought. Such a strange thing to experience but it most likely won’t be the last time I feel this way.
Two weeks ago Paul was off on Friday. He said let’s go to the Flume Gorge which is part of a New Hampshire state park in the White Mountains. Who doesn’t love winding roads and leaf peeping?! But it is in the mountains, he’s not pulling one over on me! Oh, wait – he did. This “moderate” trail, that they managed to make a loop uphill the whole way, had me saying I’m going to kill you Paul… He’d just laugh. I’d say seriously, don’t laugh at me, as I’m sucking wind and my calves are burning. He does like to believe I am strong and capable. I am in someways but up dirt inclines is not one of them. I’d like it to be. Stairs (up the side of waterfalls) we’re not the problem. Without the stairs it was absolutely a problem. That being said, being outdoors is amazing, waterfalls at every turn, deep in the forest. It’s magical and we managed to move away from the Disney World type lines a few times. People from all over the country here for this leaf peeping, waterfall extravaganza. Who knew?!
I just wanted to get in the water, icy cold, clear and clean — unpolluted! So many “no swimming” signs but I did find a place to stop, sit and feel the water, splashed my face and even stuck my head in but that was after Paul stuck his face in and blew bubbles! The smooth granite is slippery even when dry so my legs were sliding and I felt like it was a bad idea. I am not agile and I cannot feel everything due to small fiber neuropathy. Paul helped and made sure I wouldn’t fall and I submerge my face in glorious, cold spring water.
I’m OK with burning muscles and moments of “hating“ Paul for these forced marches he makes me go on — but let’s be honest, I want to be there. I’m frustrated. It is so very hard. But always Worth it!!
Since my solo outings we’ve had more things going on. I went to my pituitary endocrinologist at Mass General. I love her personality and her intelligence and her openness to what I have to say. I love the way she takes the time to think about what’s best for me which in this case is a whole lot more specialists which she can finally refer me to because I live back in Massachusetts!! MGH does the most research on acromegaly and they take the steps to helping deal with the damage. She’s realizing on a whole other level what an anomaly I tend to be. Some suggestions that she had, I’d already tried, with the opposite affect of everyone else she has seen. Not one person with my complications… it kept coming up. We’ll see what she comes up with and keep the faith that I can have a better quality of life.
A few days later my brother-in-law, Davide, was married on a beautiful fall day. It was a weekend of wedding festivities. On Monday I was in charge of returning Davide and Paul’s tuxes. I got in Davides car and headed to the mall. I was tired from so many days out but I just did it. I even ran a few more errands including the grocery store… Shocking, I know. The next day I took myself back into Boston, this time with Davide’s car to finish the study for the diabetes insipidus. It was a very long day and there was a lot of traffic but that’s Boston.
Too many days out and I was beyond beat. I needed a couch day but the next day I drove Davide to all the things he needed to get done. They don’t make it easy to get things done. You know “they“ …but we got a little something done and know how to fix the rest. I took him to lunch and we will work on completing his tasks. He’s the one who needs a driver and support… now that’s me.
We need family and we need to support each other. I will always try and do my part.
I’ve certainly been busy since moving here…. I have talked to the owner of a small art shop who sells local artists work, as well as, some fair trade items here in Haverhill. I picked up the phone and asked if it was a good day for me to come in and show her my “art on stuff”…. She’s putting it all in her store minus a few mugs for now! It’s a start and I’m very excited. I would love to be known as a local artist and find that community I’m always talking about. …I’ve also been doing an inktober. This one is woodland animals and I plan to re-do some with color!
But before finding new community, this past weekend, my dearest friend and her lovely family were in the area and we met them in Rockport, Ma. It is a quintessential New England coastal town and we had a beautiful day. Wandering in and out of shops, having lobster rolls for lunch, walking on the beach, looking for seaglass and of course skipping stones.
I took a lot of steps that day and I still need help figuring out how to not be crippled afterwards. It doesn’t matter what meds I took. I didn’t sleep that night. Pain has it’s ways of breaking through. I spent all of Sunday on the couch. It’s good when Paul’s not antsy and up for a movie day on the couch with me.
Time keeps moving on… I’ll keep looking for answers and do the best I can each day. There’s been so much going on since August and I need to take a couch day or two or three. I’ll work it out but today I am here rewriting this post because it never made it from paper to digital. It needed updating! So many things I want to do but I’m too tired to try and think about it right now. This post will be published, some more laundry done and I will hit the infrared mat and red light therapy for bit.