What I Can and Cannot Do Right Now

I am posting updates here on the blog now for a few reasons. The main one being that my neck and shoulders stay tensed, and it causes numbness in my arms, hands and fingers. It makes typing things out on my phone painful and lengthy. It does not bother me to type on my laptop which is how I post updates here. It also allows me to easily go back and search for certain things, unlike on FB.  

Our nurse retired at the end of April and despite beginning more than a year in advance to find a replacement or someone PRN, I had no luck. There were a few that were "interested" and a couple who actually followed up but never followed through. I would say I was disappointed, but it has become the norm for the younger generation. A lot of the younger people either have no work ethic or the inability to follow up and say they chose to do something else. They just leave you hanging and that is a huge pet peeve of mine. Please don't give me the "I would love to help you PRN to give you a break and it would also give me some extra money" and then you disappear. You just made me not trust you or your generation until someone proves otherwise. Your word means NOTHING to me. 

The last 4.5 months have been HARD. My health is not great and won't be improving and I have begun having additional symptoms. Between the hospital stays with Mini Mayhem, getting home and trying to get back into a routine, I have not had the opportunity to do anything for myself. Other than going to or from the hospital or to AL for doc visits, I have left my house 4 times since the beginning of May. Once was to go to a friend's house for a few hours and the other three times were to run errands that had to be done. ONE time leaving the house was for ME.

Times that I am able to sleep or rest will almost always mean something will wake me up, my bladder, the dogs, a noise.....my sleep gets more interruptions than a political debate. I forget a lot more than I remember so I spend much more time writing things down and trying to stay organized and on task. I ran out of my ADD med and haven't been able to get it refilled and now so much time has passed that I have to see the therapist before I can even see the NP to get the meds! 

I am constantly dealing with problems, whether it be inability to get a follow up doc appointment in a reasonable time or I am chasing my tail on medication refills. MM gets a new prescription but only a 30 day supply and she must see the specialist for a follow up to refill.....but no appointments are available for 6 months or longer. A doc says let me call in an antibiotic to last you until you can see the specialist and it can be ready but then I call for a refill and nope, can't refill because the doctor that sent in the Rx is not a Medicaid provider. Either Medicaid let the original go through by accident or the provider failed to renew their paperwork to remain a Medicaid provider when it was due around the end of August. MM had to go without her antibiotic to help prevent UTIs for a week until we saw the Urologist in Birmingham for a new prescription. Ggggrrrrrr

It is always something and my patience just isn't what it used to be. I have a low tolerance for stupidity and someone's lack of empathy. I just don't have time for it. I have spent less time on my phone in idle chit chat and have even forgotten to reply to many messages. If I have an opportunity to nap, even for 30 minutes, I take it. Afterward, I am focused on something different and often forget to reply to messages that I meant to. I DO appreciate those who have kept in touch and check in. 💚

I do not however have time to reply to or watch funny videos or discuss things that aren't relevant to my everyday survival. Yes, survival because that is what it feels like I am doing is merely surviving. During the hospital stays, Your Highness did not want anything interrupting what she was listening to...not my phone, not me talking to someone on the phone, not talking to the nurse....so there was no opportunity for me to play videos or TikToks. Once home, no time either because if she hears me in the living room which is across from her bedroom, she cries. After all the time of being in the same room with her, she expects me to still be in the same room with her. There has been and is A LOT of crying and throwing fits, mostly by her but sometimes me too. 

I am worn out. OUT! 

Right now, there is no place in my house for MM's therapy, so she is not getting any of her therapies, not PT, OT or ST. There is no room for her stroller to move around the house, so she stays in her bed 24/7. If there were space, I am not even sure that I could lift her to transfer her from one place to another. I don't know if she even has a teacher this year because I never heard, but she's not getting school either. My house is a disaster of boxes of supplies plus things that the dogs have gotten into during the hospital stays because they were bored. It doesn't matter if I get two things done, three more things are going to happen to put me further behind. There is no making progress. It is strictly survival mode. I am suffering and MM is unhappy a lot. She will whine and cry for several hours during the day despite my checking to make sure it's not her diaper, her stomach, her position she is laying.....as soon as I walk into her room, she stops crying which tells me she is perfectly fine, only bored. I leave her room and the crying resumes but I cannot stand next to her bed 24/7. The crying and whining weigh on me heavily. It wrecks my nerves; I have chest pain and heart palpitations and feel like I can't breathe and there is absolutely nothing I can do to fix it, so it turns into both of us crying. I used to never have headaches and now it is rare that I don't have one.  

Maybe it seems that I don't care about other people's feelings, and I am being selfish and that may very well be correct. However, it is not intentional.  I am doing some part time work to bring in money and any energy I have goes toward the work and communicating with those I am working for. At this point, I can't do anything but do my work, worry about putting one foot in front of the other and keeping MM fed, medicated on time and safe. Most meals for myself are pop-tarts or hot dogs because they are simple, easy and do not require thought in adding them to my grocery list or need any planning or require very little preparation. As a result of that and the high sodium foods eaten at the hospital, I have complimented myself with 40+ lbs. which has definitely not helped my knees.

I am just sitting over here in my confinement, until the next doctor's appointment, waiting for Jesus to come back or to have a heart attack, whichever may come first. That's all I can do. If that isn't something understandable, that's ok. You're off the hook. 👌 It's not that I do not care, it's that I can't. Not right now and maybe not again. I just can't.