Life Has Been… Next Level Hard

Hi, everyone. Apologies for the length of this post, but I felt I had to pour all of this out there into the Internet ether… Warning: RAW content ahead…

My last post was back towards the end of April. I was struggling then, but it was nothing like how I have struggled these last few weeks. Nothing.

Back then, I was dealing with an autoimmune flare. Fine. I have those. I have six autoimmune diseases. Flares are going to happen, right? They are awful and painful and tick me off royally – but I deal with them. I have to. However, it was what was to come that I was ill-prepared for and am still dealing with…

I had been dealing with awful hip pain (left hip) for several months. I’d even addressed it a bit in my physical therapy sessions and was shown some exercises to try and loosen it up a bit – but nothing was helping. Then one day I was washing a few dishes at my kitchen sink, and I was standing to do it (I had my wheelchair right behind me for safety…) when I turned slightly to the left to sit back down, something in my back just… “snapped”. I saw stars (it’s true what they say!) My legs went numb and I fell back into the wheelchair (thankfully not onto the floor). I was in excruciating pain. I was supposed to go to a doctor’s appt that morning and my friend Ford was on his way over to take me, but when he arrived, I was in the garage in my wheelchair, waiting, crying, writhing in pain… and not in any shape to try and get to that appointment. The pain was relentless and I could no longer lift my left leg. (For those of you keeping track, my left leg has always been the GOOD leg, it’s the right one that is so weak.)

The next day, the same thing happened again when I was simply standing up from the toilet. Nothing unusual or out of the ordinary about that – I’ve been successfully getting myself on and off of toilets since I was a toddler… but that same snapping happened again and this time not only the legs went numb but the middle of my back did as well. I very nearly did not make it out of the bathroom. It took me a good 20 minutes to drag myself up and scoot across the floor to my wheelchair outside (my wheelchair will not fit in my bathroom – I use the sink to hold onto and stand and pivot myself in and out). At this point, I was crying, moaning, halfway screaming from the pain. Non-stop. Ford reached out to our dear friend Josh (my chiropractor) and asked him for advice. He was pretty sure it was my psoas muscle (I’d never heard of that – have you?), and… bless him… he came over to my house on his day off (straight off the golf course, even!) and worked on me to try and get me a bit of relief. It helped a little bit, but I was still in awful pain. That psoas muscle was angrier than angry.

Over the next week, Josh and Dr. Wear (one of his chiropractic partners) worked on that psoas muscle to try and get it to behave. Now, if you have never had this muscle to constrict on you, and/or experienced the treatment to get it to relax again – please may I respectfully say that I hope to the heavens you never have to go through that. It’s INCREDIBLY painful. There were actual screams coming from my adjustment room. I can only imagine what the other patients (and the people in adjoining businesses) were thinking. It probably sounded like those docs were torturing me back there – and in all honesty, they were! But in a kind and loving way, trying to help me through this crisis. Unfortunately, that muscle was just not having any of it – and even though it would calm down a little bit, any relief would only be temporary. I was in a state of perpetual agony. I could not take the narcotic pain meds because they caused painful esophageal spasms. Over-the-counter pain meds wouldn’t touch it. Neither would CBD oil. I went to the hospital ER a few times (and of course, they could do nothing to help, really…) I went for days and days and days in excruciating, unmanaged/uncontrolled pain… not being able to sleep… not being able to even find a comfortable position. It was awful and it was so taxing on me.

So we enlisted the help of my nurse practitioner to get me set up at one of the local hospitals for an MRI of my back/spine/lumbar area. The initial report came back rather vague and non-alarming, but then SEVERAL days later, the detailed report came in, and… well, it was worse than we had been led to believe by that initial report. I had a few misbehaving (bulging) discs. One of them was super bad, apparently, and it is the one down at the bottom at L5 S1… from what I understand, it was bulged out (herniated) towards the right… so I guess it’s pressing on a bunch of nerves that it shouldn’t be – and it is causing all sorts of mayhem (thought I still can’t figure out why it is affecting my left leg and not the right, but our bodies are wired all sorts of weird ways, eh?). It’s also quite likely what has been causing the psoas muscle to be so insanely irate! Well, the news wasn’t great, but thankfully, I have the absolute BEST chiropractic team on the planet… and now that they knew what they were dealing with, they were quick to get me started on a treatment plan for it.

I started disc decompression therapy last week. It’s this table that I have to be strapped into and it stretches me gently in a position that is meant to help the discs to move back where they are supposed to. I feel sure I am not describing it as well as Josh undoubtedly could, but that is my layman’s description. I go in, get my regular adjustment, and then they put me on the table for a bit. I have to do this 3x a week for the next month. The good news is, it is starting to help! At first, it didn’t… but after about the third treatment, I noticed less pain and stiffness. Mind you, I am not “cured” and I still have pain… and I am being SUPER careful about how I move. That left leg is still not lifting very well, so I have a long way to go… and will need to get BACK into physical therapy (I have been gone for about a month now!) I do have hope that it will get better though.

Bless them… Ford was out of town at the start of last week, so these lovely docs at Pax Family Chiropractic (Dr. Love and Dr. Wear) helped to transport me to and from the office on Tuesday so I could get started on the decompression therapy even before Ford got back. Absolute ANGELS. Ford’s back now and could take me Thursday and Friday – and again yesterday. I am lucky to have such wonderful people who care so much to ensure I can access the help I need.

The bad news is that all of this has thrown my mental health into one of the deepest ditches I have ever been in… it’s bad, folks. I have been incredibly low. During those seemingly endless nights of pain, I had some of the worst panic attacks I have ever had. There were a couple of times last week when I honestly felt like checking out. Ending it all. I couldn’t see continuing with things the way they were. The pain wasn’t letting up and it was on a level of about a 9 to 10. It takes a LOT for me to put my pain at that level. Over these past several years, I have endured a LOT of bad pain… trust me, I KNOW pain… but this was next level. I was thinking of ways to end my suffering… and I was quite literally living from minute to minute… hour to hour… I was fighting harder than I have ever fought – with everything that I had. I didn’t WANT to die, but I was struggling to see how I could keep living like this. I was especially fixating on how I have possibly undone all of the hard work I have done over the past year and feeling like an utter failure on every level. It was too much.

[Below: Me in the throes of a depressive/panic episode… I don’t know why I even took a photo… I think I was hoping I could look back on it later and see how far I’ve come if I ever get better… In the moment, I never know what my brain is doing, but it snapped this photo, so I am using it. It isn’t pretty, but it’s real. This blog is all about keeping it real. The good, the bad, and the ugly. This is quite assuredly the ugly – but also authentic.]

My depression demons were really going to town on me. I think a lot of it also had to do with feelings of utter failure. I had come SO FAR in the past year and a half since Dad died. I had gone on the Wahls Protocol, reduced my inflammation, was in physical therapy for a YEAR, and was learning to walk again!!! I had gone from being mostly bed-bound and trapped in my upstairs bedroom for almost five years to being able to leave the house and access HELP. For me to suddenly find myself once again trapped upstairs, in my bed, and in such unbearable physical pain was simply too much. I have a LOT of medical PTSD, and this was triggering me something awful. Being all alone in the house the majority of the time also didn’t help. Try as I might, I could not get interested in books, television, blogging, or any of the things I might ordinarily use to distract my mind from all of the bad stuff. It just wasn’t happening. On the eve of my birthday, I was once again having suicidal thoughts. Bad time to be having those, yeah, but ANY time is a bad time to be having them… I was feeling so low. So down. So dejected and hopeless.

My birthday came along on Saturday. I had zero interest in it… it was “just a day” to me. Another day of pain and wondering why I was even still here. I used to love my birthday, but in recent years, not so much. And this year, Jannipants Birthday 2024, I was exhausted. It didn’t help that I’ve also been having shortness of breath, pressure in my chest and upper gut, dizziness, and a whole host of other medical/physical issues. I felt horrible all day… then Ford and his husband Rodney surprised me with a visit and they brought me some yummy Wahls-friendly brownies they’d made, along with a card and gifts. They also did some things around the house for me that I’d needed done. It was lovely. After they left, I went back upstairs to lie down again because I was feeling really awful by then… the fatigue was unreal and my depression demons, despite the lovely visit with the guys, were still in full force. So, too, was my panic. But then Josh and his lovely wife, Jess, and their boys came by to see me. They too, brought me a card and presents. We had a nice visit, and Jess was so sweet to offer a lovely prayer for me before they left. In the moment – that absolutely meant the world to me. I didn’t let on how badly I was struggling while they were there – I was trying hard to hold it together / mask it as well as I could because I didn’t want to scare their kiddos. I SO appreciated their visit though, and hated that I was going through this internal war inside.

After they left, and I was once more all alone, things only got much worse, and I ended up calling for an ambulance. I was having actual chest pains and pressure and didn’t want to fool around with that. My blood pressure was SUPER high. The back of my neck was numb. They took me in and checked me over and said I was “fine” and sent me home. *sigh*

If you only knew HOW MANY TIMES this same scenario has played out in my life. I’m “fine”…

But I’m not fine. Not at all.

I spent all day Sunday resting from the ordeal the night before and contemplating my next move. Good or bad.

Monday morning, in a “Hail Mary” sort of play, I decided to send my nurse practitioner an email. I asked if I could come in to see her to discuss…. well… ALL of this… she told me to have Ford call in for an appointment, which he did, and I got an appointment to see her the next day. So yesterday afternoon, I went.

I took a FOUR-PAGE LONG bulleted list of things that were going on with me. I explained that I was completely overwhelmed by it all and was completely and utterly exhausted – I just couldn’t deal with any of it anymore and needed guidance. I needed someone to play “quarterback” (look at me using American football terms as if I actually knew anything about it… lol… I don’t. It isn’t my jam. I should be using baseball terms, shouldn’t I?) I asked if she would look over the list at her earliest convenience and maybe get back to me and see if we couldn’t formulate a plan of some sort to attack the things on the list. I was used to my former primary care doctor dismissing me when I came in with my concerns. If I came in with a list of even just three or four things to discuss – he would tell me to “pick one” and wouldn’t even talk to me about the other things. I was fully ready for her to be dismissive as well, but she wasn’t. She skimmed the list, and picked a couple of things that she could get me referrals on, and then she focused on the mental health aspect of things as it was, by far, the worst it has ever been. It probably also had to do with the fact that I was crying non-stop while I was explaining everything to her. They gave me some sort of depression survey and an anxiety one and I… well, let’s just say I got the highest possible scores on both, and a high score, in this case, is NOT good.

She did a bit of research and found an anxiety medication that will supposedly play nicely with my Lupus medication (and other meds) and we are going to try that. I started taking it last night. I REALLY hope it helps, because I really don’t know how I will cope otherwise. I have tried other meds in the past and have had terrible side-effects from them… even making me much worse than I was. I have to hope and pray that this one works.

My nurse practitioner has promised to look over the list, though… and will email me this week with her thoughts on how to attack these things. So for now… I am trying to hang in there. For now… I am safe.

I have been unable to do ANY work on any of my little “side hustles” that I’ve been trying to get going over the past year… I haven’t worked on the YouTube channel, tee shirts, Amazon books, tutoring… any of it. I have been too sick to do any self-promotion to try and earn any money off the things I DO have out there. Each month is a constant battle to cover my basic living expenses/bills. The cost of living has skyrocketed in recent months, but my disability stipend and food stamps money haven’t… I am under extraordinary financial stress. This financial stress, I’m sure, is not helping my physical and mental health. But it is what it is. I am not in a position to “fix” it right now. I wish I were. I wish I could find some sort of part-time work to supplement my disability stipend so I would not have to squirm and grovel each month asking for help to purchase things like toilet paper and trash bin liners… or money donations to help cover the quarterly garbage collection bill, or increased electric bills during peak heating/cooling seasons, etc… but… I don’t have that right now. And until/unless I can improve my health – I am stuck. So I still have to continue to be an online beggar. A pest. I’m so very sorry. 😔

With that being said (and apologies being made, yet again), if anyone is ABLE (and willing) to help me, you can make a financial donation here…. Also, I have several items on my Amazon wishlist here… Any and all help is cherished, especially now when I am quite literally battling for my life. I am trying SO SO hard, folks. I promise you that. I will continue to fight with everything I have in me. I’m very tired, but I’m still in the game.

Huge apologies for the lack of posts over the past month or so… hopefully this NOVEL of a post will explain why. I am going to try and do better, as I feel like writing does help my mental health – so that has to be a positive thing, right? For those of you who have hung in there and read all of this – THANK YOU! Hopefully, going forward, the posts will not be THIS LONG!

Sending all my love to all of you…