To be honest, I am not entirely sure how to start this post… But I feel like that may happen quite a bit in the future as we cover difficult topics that make me vulnerable.
So in my last post I talked about how I have officially been sick for three years. In those three years I have gained 8 diagnoses and 20 daily medications, 1 medication every other week, and several rescue medications for allergies and pain.
I had the diagnosis of Polycystic Ovarian Syndrome (PCOS) prior to becoming ill. You can read all about that and the rest of my medical history by clicking the medical updates tab at the top of the blog and scrolling down to the illness you wish to learn more about.
I actually have 9 diagnosis. NINE.
Polycystic Ovarian Syndrome, Idiopathic Intracranial Hypertension, Hypothyroidism, Primary Adrenal Insufficiency, Mast Cell Activation Disorder, Gastroparesis, Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia.
Nine official diagnoses. NINE. …and counting.
Unfortunately that means that I deal with A LOT of wide spread, chronic pain. From chronic head pain to pain from my stomach not emptying to dislocating joints… I literally am in pain basically every moment of every single day. It’s really difficult to cope with sometimes and spend a lot of the day trying to get comfortable and distract myself.
This last spring I went into what we thought was a flare and we were unable to get my pain under control so we bumped my fentanyl patch from 25 micrograms an hour to 37.5 micrograms an hour. Unfortunately that “flare” has yet to come to an end but unfortunately the government is putting regulations in place that state that if you are not terminal and/or don’t have cancer, you cannot be on a narcotic equivalent to more than 90 milligrams of morphine… so as of last Friday (August 31st, 2018) we tapered back down to 25 micrograms of fentanyl.
Ever since, I have been in more pain than I was when we decided to increase my dosage from 25 micrograms to 37.5 micrograms an hour. It has been a long, incredibly hard week. It’s taken a toll on me not only physically but emotionally. Thankfully I see a psychiatrist weekly to try to help me cope with rough weeks like this.
I see an incredible psychiatrist who also deals with chronic illness. We see each other virtually (via webcam/FaceTime) via an app which allows me to see her no matter where I am. I can be on vacation, at home, in the hospital, etc. It doesn’t matter how I am feeling or if I can manage to get myself out of bed or not because I don’t actually have to go anywhere for our sessions.
And I love that she gets it because she deals with chronic illness as well.
All week I’ve been coming back to the same thing… I wasn’t this sick three weeks ago. Hell, I wasn’t this sick 18 months. In April of 2017, we went to Disney for a week and we woke up every morning around 9 AM and walked all day in the heat and didn’t get back to the hotel room until almost 12 hours later, well after dark. Was I uncomfortable? Yes. Was I exhausted? Of course. But it was manageable the entire trip except a handful of times and even those times don’t compare to this.
6 months later (October 2017) I couldn’t even finish the three hour walk through Ikea without being in unmanageable, severe pain and then I still had to manage the car ride home… and these kind of… physical limitations make it really difficult to participate in even short fun trips.
Unfortunately we are about a year out from that rather random, sudden decline and things appear to be continuing to decline at a much slower rate. If I have to decline at all, obviously I am thankful that it is at a much slower rate, but we were hoping that once we got some answers we would be able to work on repairing whatever damage was done and I would gain back what I have lost, but that has yet to happen.
As you can imagine, that can be really difficult to cope with.
I have always been a go getter. When I was in high school I lived at the high school. I was in Fall Play, Spring Musical, Marching Band, Pep Band, Spanish Quiz Bowl, Sunshine Society, National Honor Society, and Swimming. Swimming practice started as early as 5 or 5:30 in the morning and with all the other activities I was in, there were times that I didn’t leave the school until 9:30/10 at night just to get up and do it all over again.
After I graduated from high school I used my dual credit courses and student teaching during high school to my advantage and became a preschool teacher and also nannied for at least 2 if not 3 families at once which meant I was working anywhere from 40-60 hours a week and going to school full time to obtain my degree. After Sallie passed away I was nannying and working at the bakery which meant I was working 60-80 hours a week and going to school full time. I went literally months without a single day off when we were trying to get (and keep) the bakery off the ground.
After I became ill in 2015, I was still working full time and going to school full time… with wide spread chronic pain that often made it really difficult to focus so studying took up A LOT of my time while still trying to account for treatments and rest.
so for the first time in my adult life, I am *only* working (and trying to take care of my sick body which is a full time job of its own…).
Every time my body demands I rest, I lay there and think to myself “I could be doing that… and this… and that still needs to be done…” And trying to learn not to equate my self worth with the number of things I successfully check off of my to do list is hard. It’s really hard.
And unfortunately, I don’t think there is any way around the hard stuff… you have to go right through it. You have to get your hands dirty and fight hard, because coming out on the other side, battered and bruised, but still alive is what teaches us lessons and makes us who we are.
…or something philosophical like that. 😉
Bumpy Back Roads 