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Spent my Wednesday laying on an MRI machine most of the morning followed by seeing all my different doctors. Getting old every year donating a day to the machine. Now sadly I’m back to 6 month rolls and not yearly due to the presence of a new assumed to be rapidly growing mass where I had my major one 20+ years ago. It was not on the scans last year and is this year and already at 9mm. 9mm might not seem like a lot or very big but for an NF tumor it can be. Especially when it’s where I had an orange sized one removed all those years ago. Everything else of the innumerable tumors have had no to minute growth. So technically stable. Other than the one new one. Nerve root tumors suck. Pain that cannot be managed without swallowing pills all day long. And right now I am so burnt out and in really bad pain and sadly not one person can help. Modify my lifestyle to avoid the pain flare ups. So essentially sit and do nothing any more.
Last 6 months my spark is gone. I wouldn’t call it depression. Just no real joy. It’s hard enough to get thru a day anymore. I am so tired from lack of sleep as well.
Hearing doctors say “There is Nothing we can do.” Is a tough pill to swallow. And they can’t. They don’t have a magic wand to magically erase the tumors to relieve the pain.
It’s caused me to miss a lot of important things in my life. Friends getting married, parties, and relationships.
But it has shown me who my true friends are.
And sadly shown that these friends are more like family than my own.
But the even harder pill to swallow is I’ve come to realize as much as I want a family of my own, have kids and have the “American Dream” life it’s not meant to be for me. Or would be totally unfair to a spouse to have to take care of me when my condition progresses. Let alone having a child or two their dad is unavailable for most things without causing undue pain for me. Not fair to them to have an absent father. Or one that’s not there when they need him.
I’m laying here tonight after all the Thanksgiving wind down. I managed another great Dinner again with some help. But after dinner I was so sick with pain all I could do was sit and watch the Seahawks get slaughtered by the Niners and hardly even stay awake for it.
I’ve about even given up on using cannabis. It just does not work any And working with a new local shop we found out why CBD won’t work one of my meds blocks its effectiveness. And now taking an extreme high potency THC only strain and sadly I get about 10-15 mins of relief and then it comes back. And I can’t walk around stoned all day. And yea I’ve tried medibles, tinctures, drops, and about every way in I jest or inhale it.
Just no escaping it. And it’s now totally messing up my life to the point that I'm struggling. And sadly nothing I or anyone else can do to help. I just have to figure out to live in the high levels of pain I’m in.
If you have ever seen a spinal MRI just imagine seeing what looks like small grapes on every single nerve leaving the spine and where the sciatic leaves? Imagine it being bunches of grapes. Down both sciatic nerves as well.
Sadly the NF drugs currently on the market I am unable to take since it’s a MRNA Inhibitor and I am a gene splice donor they have not tested on the variant I have. So Medicare won’t pay the $6500 a dose cost. And out of the handful of adults I am connected with had little to no real results with it and if you stop taking it the tumors start growing again. So Medicare says nope. Have a neuro stimulator in my back as well but even that has been hit and miss on effectiveness. Used to be 85-90% relief now I’m down into the 40-50%.
Cant take more pain meds or OTCs as I’ve got severe central sleep apnea due to chronic opiate use. So technically I could simply not wake up one morning if my machine can’t get me breathing again. Severely damaged brain stem from it. Right at my breathing regulator. So think SIDS but in a full sized adult.
Isn’t my life just peachy?
Just one of them nights I need one of those hugs that just takes it all away, something to let me know it’s okay.
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Here is a hug for you and I hope that somehow you get better soon.
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