I’ve had a weird day, and I need somewhere to process it all, so here goes. It all started out with a very long night with little sleep, high pain and anxiety out the wazoo! I tossed and turned and cried half the night, struggling with a crippling depression that was threatening to rip me away from my sanity. Sleep finally found me around the time the Sun was coming up, but I only got a few hours worth at best. I was back up by 9, but mentally feeling better. I had a real long chat with my Mom, just catching up on life and the family. It was a nice start to my day and I honestly felt a little better just being able to actually talk to her.
Michael and I had to run to town, to go to the local food pantry for assistance, and they were closed for the week due to remodeling. Apparently we had missed the memo! Ha! Well anyway, luck was on our side because the man that runs it had us pull around back and he gave us quite a load to haul home. He made me promise not to tell anyone, so I won’t name our angel here, just know that they still exist and we were blessed today. We ran a couple other errands and headed home. As soon as I got there, Bestie called to see if I wanted to go to town with her, so I made yet another trip to town. Two trips in two different cars in about two hours time! It was quite the afternoon, but I truly enjoyed the time I got to spend with Devan.
I’m feeling the Fall time vibes today. I can feel the changing of the seasons and for once, it’s a good feeling. I feel like I’m coming out of the fog that my recent rheumatology appointment left me with. I feel less depressed today than I have for the several days prior. Life feels a little less daunting, even if it’s just for a moment – I’ll take it! I almost allowed myself to get swallowed up in the darkness and that scares the crap out of me. I’ve been to a level of depressed before that most people never see in their lifetime. I’m always extra cautious around this time of the year as I tend to get depressed in the Fall and Winter. By Spring, I’m a whole new person you wouldn’t even recognize.
Tomorrow I have a phone appointment with my home health care coordinator. I originally planned to tell them that I did not need their services, but after further discussion with Michael, it was decided that we will accept their offer after all. I have some boundaries and conditions that they will have to understand, accept and comply with or this just won’t help at all. My friend told me that as a caregiver they become like family and I am truly hoping to find a bond with someone like she speaks of, but I’m quite frightened by a lot of different people so this will definitely be a process for me to adjust and adapt to. Just agreeing to let someone come in and help me makes me a little sick to my stomach, but I’m at the point now where I really do need the help. Michael tries to take care of me as best as he can and he does an amazing job. I never would have thought that he would have to take care of me like this. It’s embarrassing. I don’t like needing my husband for such basic hygiene, but I do and he does it for me with a smile on his face. And I appreciate him to no end for that, but he’s looking for work and soon will not be available to help me as much and we need someone that can fill in the blank spots, so to say. I’m just hoping and praying that this will all work out. I want to take some of the stress off of him so he can breathe a bit without worrying about me every second of the day. His life shouldn’t have to revolve around my failing health, but he’ll tell you differently.
My bladder flare is still going strong. Each passing day leaves me more convinced that the Methotrexate is causing the increased pain. I suffer with Interstitial Cystitis and a lot of different foods, drinks and medications affect the bladder. I’m hoping and praying that the pain will settle after a few more weekly doses, but I’m slowly losing hope. I feel like this bladder flare is never going to stop. Usually I only flare for a few days. Rarely will a flare last longer than a week, but it has happened more than once in the past year. I’m just miserable this week!
I’m due to take an increased dose of the Methotrexate and to be honest I’m kind of dreading it. That pill made me pretty nauseous and I’m just not ready for that again. Unfortunately, I have to take my son to the doctor the same day as my dose and I’m nervous about being too sick to drive him there. So far, I don’t much care for this new drug. The fact that it is low-dose chemotherapy is still hard for me and my family to wrap our heads around. My mother is especially struggling with it all, but she’s trying to understand it better. Gods bless her for trying! These are rare diseases that even most doctors don’t really understand. I’ve had to educate myself like a Medical Student would just to stay alive despite unknowledgeable medical practitioners. It’s a battle when you’re a zebra!