This will be more of like a diary post, I just have to vent.
I’m just tired of all the medial issues happening. My spinal tap left me with so many complications so I got a blood patch that gave me even more complications and it didn’t even fully work. I still have symptoms of a csf leak. I go to my neurologist yesterday 3 weeks after the spinal tap and he says all the results from my spinal tap arnt even in. He said that he isn’t sure if insurance would cover another blood patch so he then and there decided to give me nerve numbing injections on both sides of my cervical spine. Then he threw me a bunch of migraine medication and told me to hope the blood patch can work itself out in the next few weeks.
I’m just tired. Since the spinal tap 3 weeks ago its just been so hard. I’ve been so tired and in so much pain. I was already in pain and tired before but this is different. Can’t do therapy cause insurance doesn’t cover it out of state since I work remote. I can’t actually let my family or friends know how hard it actually is wasting the entirety of being 25 in my apartment because some mysterious bullshit happened and put my life on hold.
It’s tough. I’ve lost all my friends besides one due to the fact I moved to a new city a year ago and then all this started. I haven’t been able to do anything all year. The simplest things cause too much pain. My pain mgt doc is helping me with pain meds but they make me so tired and out of it but it’s better than being in the pain I would be in without.
My previous life is gone, everything changed in one year. This spinal tap put me over the edge. I was staying strong but this spinal tap is the worst idea anyone has ever had. It’s hard dealing with all this myself. It’s definitely made me stronger mentally but I also don’t want to push myself into depression which I really think I’m going. I’m starting to be more and more numb as the days go on. Just care less about everything. But there’s nothing that I can do about it. I’m stuck where I am and this is my life for the foreseeable future. I don’t have the money to pay for therapists out of pocket. Medical bills have already drained me.
I’m sorry you’re facing all this alone. The mom in me is sending out virtual Mom Hugs from afar, but also wondering if it’s not time to let your familyand/or whatever close friends you currently have in your life in on how bad things are if you’re suffering this much. I also experience the cycle of being too tired from taking my meds to do much, but recognizing that I am a lump of pain on the couch without them, so it’s still better than not taking them at all. It sounds like your current cycle is a particularly bad one.
I know am lucky that I don’t live alone and have the support of my husband to help me get things done and close family and friends to talk about things with. It’s the only way I’m able to do this. I am impressed at your fortitude, hanging on this long without support-- but it’s possible you’re risking your mental and physical health if you don’t let someone help you.
I also echo the advice to find a social worker who can help match you up with any programs you weren’t already aware of. A friend of mine is a Patient Advocate/social worker for a living and this is the type of thing she does all day. If you don’t know how to find one on your own, ask your PCP or one of your specialists to help hook you up with one. When my mom needed more care than I could give her, I spoke with her PCP and was assigned a social worker through their practice who was really helpful in letting me know what my options were and what the next steps would be once I chose one.