I have been promising this post since monday. But I have always been too tired or in too much pain to write it or post it. I am going to start this tonight but it is late for me and I may go to bed before finishing so it may take several days.
The fact is before I even went to my pain doctor to tell me the result I knew things were bad. In the morning I can only sit in my chair for at most two hours before I have to get up and do something that helps relieve the pain. Mostly that is going to bed. I don’t sleep just lay their reading news or telling my self stories I create hoping to fall asleep. Randy sent me a headband with speakers but that just interferes with my own thoughts and keeps me awake. It was a good try and I bought one for Ron and he loved it. I will give this one to him. I go to bed and lie there only to get up and sit for a couple of hours to have the pain again overtake me. Once the pain gets that bad it is 10 to 15 minutes at most before I have to leave the desk and simply walk around or do something because the pain gets so bad so fast.
Also Tupac is on the desk being as close to me as he can. He is not lying on the towel I leave down for him but as close to the keyboard as possible even at time placeing his paws on the on the keybord hitting random keys. He wants to be as close to me as possible since Ron has been away so long. He feels he lost another human. I will be exciteed t0 see him react when Ron gets home on monday night.
So before the doctor told me the damage I knew something was badly wrong. So remember that even before I talked to the doctor I knew something had gone drasticly wrong. Sadly the MRI showed that.
Yup figured that would happen the pain levels are too high so I am going to bed. It is 8 PM my time.
It is now Saturday and I am trying hard to get this post done and out. But today my pain levels are very high and it is difficult to focus but I will do my best.
One of the things that the doctor told me was that my spine is no longer aligned; the disks are not lined up with each other but shifted to different degrees. Remember this was only the lower spine now they are going to MRI the upper spine. Second my spine has curved wrong. Then we got to the serious stuff. Degenerative discs, bulging discs, and discs so damaged that the nerves are outside the spinal channel. The arthritis is so advanced it is deep / spread in each vertebra. She tried to explain all the medical terms. At one point she excused herself to go speak to the surgeon I see for spine shots. When she came back it was with bad news. He no longer thinks epidurals will help me in my lower spine and I need nuero surgeon to do back surgery. Crap I cannot afford that. I am losing my sight, Ron has to have eye surgery right away, and the van needs 2 grand in repairs. That doesn’t even include my eye surgery and the repairs on our home.
While I did not understand everything she said I so desperately wished Ron had been there as he often explained these things to me later, and I have forgotten some of it, the situation is I need an MRI of the upper spine as well, she has refered me to her prefered spianl nueraal surgenon. Then I will need spinal surgery as the state and federal government won’t let them increase my pain medication because I can’t take the fentanyl patches with my skin allergies. I am being squeezed into a surgery I cannot afford or seeking illegal drugs for relief to be able to function.
I remember when I started in this clinic in 2009. They looked at my MRI of my spine and gave me 75 gm of morphine twice a day. I asked it to be reduced to half that amount and it was and I could live normally. But after the opioid “crisis” the states started to inject non-medical legislators into the medical field to show they were tough on abuse and misuse of drugs. It got ever more crazy until my life went from normal and even being able to work for a few years to not even getting enough pain relief to sit in my desk chair and blog for an hour. Now the federal government is demanding it be restricted even further, as RFK Jr. taking steroids can work out in jeans. On the restrictions I can’t get enough relief to blog for any extended time of the day. I spend half of my awake time in bed instead of at my desk. I struggle to stand to do dishes. I just told Ron that I cannot clean the floors before he gets home as I tried and it left me in tears. Even with our lightweight, easy to use cleaning devices. The damage to my spine and the lack of medical relief have gotten that bad. This makes no sense to me. Why deny me the pain blocking medications that allow me to fuction semi normally. It simply makes no sense to me. Why put me in this state what is the goal?
Do you see my point? Why put me and people like me through this? Do they want us to use illegal means for relief, or do they want us to suffer to death and go away? Do they care about us at all as they make these rules? There is more things my pain doctor told me about my spine I did not list yet, things like protrusions, spikes hooking nerves, some thing she kept say stenoisis, and nerves being pinched between vertebrae. At one point she mentioned I have advance degerneritive disc, I so wish Ron was there as I understood so little of it, then came the but you need a neurosurgeon and back surgery to help you because the state and federal government won’t let us give you enough medical relief to have any life. I hate this regressive holier than thou republican elected officials that swallow all the illegal drugs they can get from their providers while denying us poor people relief for bigoted racist reasons and their personal gains.
I am sure I left things out. I had to take after talking to Ron a saved 30 miligarm instant relief morphine because I was going out of my mind. I try desperately to save extras so when the pain is so off the chart I can get relief. But with the new restrictions, how do I do that? Why do the people in power who have access to pill mills and who have no pain and want to just make a name for themselves while doing the very thing they legislate against try to hard to make the live so people like me so hard? And I am poor and scared. Hugs
Scottie's Playtime 
I imagine you are scared; I’m worried for you. Hang on until Ron gets there, then get the info you want. You guys will get done what you have to.
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Hi Ali. Thank you but I will be OK, I don’t have a choice do I? But yesterday was a bad day for me. I went to bed about 6:15. Woke at midnight and every time I started to drift back off the leg and foot cramps would start causing me to be fully awake. I finally got up a bit after 4, took my morning meds a bit early, and started my day. It will be a long day. Hugs
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You could nap when Tupac naps. Just a thought.
Also, for when you cramp, do you have something like Icy Hot or Bengay? Something you can rub on and help you untangle the muscles? Night cramps are the worst; I remember those from when I was pregnant. DH used to get them after he turned 60; we bought him some magnesium oil spray that smells like the forest. He liked that really well. Just another thought.
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Hi Ali. Sadly those things really can’t help although rubbing them after the signal causing them dies down helps. Here is why they happen and the only real solution is to change positions. From what my pain doctor explained my spine has become deformed with spikes and gaps, the spikes hook the nerves and pull against them and the gaps and thickening spots pinch the nerves sending signals to the muscles to contract or sending pain signals to the brain of different kinds of pain in an area but no sign of anything causing pain. The pain doctor prescribes muscle relaxers and when it is really bad I have to take extra of those so that the muscles can’t contract even with the signal telling them to. Hugs
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Scottie, I’m sorry you endured a bad day but recognized that it’s a bad day, and have come back stronger. That’s always the lesson I keep learning for myself: there are bad days. Press through them, get past them, go on. I don’t want to trivialize it, though, as I find your bad days seem far worse than my own. My hope for you is that you’ll have fewer bad days and more good days. Hugs and love, brother, take care.
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Hi Michael. Thank you. Everyone deals with their personal problems and bad times differently and I find it is like we say about comparing abuse situations, it doesn’t matter that it is not the same level / events because it is about how it affects the person. Two people experiencing different levels of adversity can have it feel just as bad for both of them.
As for surviving and getting through it I have things that help me deal and having an outlet like this community really helps. Plus I remember what my first ortho surgeon told me about bad days and my growing pain. “Anything that cannot be changed must be endured”. I seem to have two choices when the horrible days happen, give up or get through it and survive it. I am not ready to give up, I still enjoy life, I love my husband and the great community here. I like the feeling of doing good with the things I share and post for others to see. I do have a good life and I am lucky in so many ways. I have a home regardless of its condition it is a good home, I have food to eat and I won’t go hungry if I don’t want to. I have pain medications and access to great doctors. I survived my abusive childhood when many in my position did not. So I have much good in my life, ways that I am far more fortunate than so many others. Sadly the hard part is to remember all the good things when the pain hurts to the point of tears and everything is frustration and despair. But I do try because I have to and because I want to. I will not give up. I did not give up as a kid, I won’t give up as an old man. Hugs
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You have to stay hydrated : Gatorade/ Powerade/ Water/
Sitting long hours . Not moving much Possibly dehydrated. Drinking coffee but not enough water. That combo alone can trigger cramps.
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Hi Sean. Thanks for the thought. You are correct and my doctor has me drinking plenty of noncaffinated liguids. He calls it free water because of the lack of caffeine. But that is not what is causing my pain and cramps. My spine is badly damaged and it is pinching and pulling on the nerves. That sends signals to the muscles to spasm or contract, It also sends pain signals to the brain even when the area in pain shows no damage. Plus I take magnesium for the muscles as well. Hugs
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I’ve been in your place for a long time. For me, adding Omega-3 (fish oil) and a magnesium complex made a real difference. It helped with inflammation and muscle tension.I also noticed that as I worked on losing excess weight, the pressure on my spine improved. Extra body weight can increase compression on the lower back, especially L4-L5.Everyone’s situation is different, but supporting the spine with proper nutrition, movement, and weight management can really help.
I try to stay away from pain medication unless it’s absolutely necessary. It’s easier said than done, I know. For me, I only used it when the pain was severe, not as a daily solution. Long term, I focused more on reducing inflammation, improving movement, and strengthening the body. Everyone’s situation is different, but managing the root cause helped me more than masking the pain.
I started a Tai Chi and improves: Nerve communication, Postural alignment💪 ..Deep core stability🩸 Circulation🧘 Stress reduction (which reduces muscle tension) And the best part?Low impact. No aggression on joints..
The biggest shift isn’t in the spine — it’s in the mindset. When you change “I can’t”
to “I can,” your body starts following your belief.
Hope this helps.
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Hi Sean. My bones started dying and distorting in the early 1990s and by 1996 I had lost the top of my right leg at the bend toward the joint. I was placed in a wheelchair for 2 1/2 years while my doctors worked to stabilize my bones and give me surgeries to help strengthen the parts of my leg bones that were too thin while opening up blood flow channels in the places they were too thick. Over the years the damage moved to my shoulders, other joints, and my spine. I have been on morphine / opioids at different strengths and muscle relaxers since the begining almost as the muscles and nerves grew more damaged. I started to have epidurals (spine shots) and trigger point muscle injections in 2009. In 2014 I again had to go back into a wheel chair for three years until I could start walking once more through surgery, medication increases, and therapy. I have really great doctors who monitor my situation in depth and detail. I appreciate your suggestions but the fact is the damage to my bones / spine, muscles, and nerves is far too advanced for what you suggest. Hugs
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Scott
Thank you for sharing your story. Reading what you’ve endured over the years puts a lot of things in perspective.The strength it takes to face that level of pain, surgeries, and uncertainty — and still keep moving forward — is something many people cannot even imagine. Your resilience is real, and it deserves respect. Sometimes the strongest people are not the ones without scars, but the ones who learned how to keep living with them.
Wishing you continued strength and support from the great doctors and people around you.
Thank you for reminding us what perseverance really looks like.
#Resilience #Strength #NeverGiveUp #FollowSeanJokicDailyMotivation #TheMustangAdvantage 🐎
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