fyi- bit of a support backlog due to health issues..

[TheFlyingCamera]

Keep up the good fight, Sean. The more I deal with the medical profession, the more I become convinced it is as much black magic as it is science. Try some glucosamine-controitin supplements (I know they're meant for joint health, but your spine is a series of articulated bones, lubricated by cartilage). Another thing to think of is doing what Hemmingway did for his back pain- he had a desk made so he could work standing up. There's actually a whole school of workplace design taking hold that is getting rid of the traditional desk chair and implementing stand-up workspaces because they're healthier and in many ways LESS stressful.

 

[Curt]

Sean, a year and a half ago I sat in one of my doctors office and ask of him to give me ten or fifteen years to finish my work and wrap things up. I was at the all time low, mentally, physically, and spiritually and was devoid of all hope. Since then a team of physicians adjusted my medications and finally over many months gotten me to a level that I can live with.

Then one month ago today my insurance company refused to pay for half of the medications I need to live a fair life. I decided to go off of the declined one, the insurance now wants me to try some other drugs, and my mental status went up a bit and my pain went to the bottom of the barrel. I know what it's like to be awake sitting slumped over in a chair with pain while everyone gets up showers and is on their way to school or work. So I start over that same road to pain relief.

I have had surgery, pt, alt. approaches like acupuncture, tens, ideation, thought therapy, meditation, reading, writing, walking, dieting, reduced lifestyle, increased mobility, you name it and I've been there.

I had a DECA scan and have arthritis in the extremities and bone demineralization but it isn't treatable beyond massive amounts of Calcium and Vitamin D. The bottom line is the pain level. One a scale from 1 to 10 how would you rate your pain level right now. The answer is pain is what you say it is. It can't be measured or defined by the physician. A huge part of your situation is going to be pain management, then physical treatment. When the degeneration affects the function of a system in the body it has to be dealt with or the body as a whole will fail. The treatment plan has to be specific and explained to you in a way that you can see exactly what it does.

Everyone is different and that's where a tailed treatment plan for you will be different than for other people, that's why "pain is what you say it is". Lack of sleep can cause you judgment to be impaired also and it's important to write down the specifics and if possible to have another person who is knowledgeable of the plan.

One last thing, I bought a memory foam mattress after surgery many years ago and it was about twelve hundred dollars and didn't work worth a dam. Live and learn the expensive way. Good luck and let us know how you are doing.

Curt

 

[arigram]

It true?
I am sorry Sean, I wish you the best in fighting it and living a beautiful life nevertheless.

 

[lightwisps]

Sean, first off, you can beat this. Stay positive and look for humor. Secondly this is going to sound like a crazy idea but have you heard of the "Magic Bag"? My wife has back problems and the silly thing really works. You just pop it in the microwave for a minute on both sides and it warms whatever is in it perfectly. They are cheap and very durable. If you cannot get 1 in N.Z. but want to try 1, I will be more than happy to send you one from Canada. I have broken many bones in my body and I use it all the time for my arthritus. No drugs or anything else intrusive. Just email me if you would like me to get one for you.

You run a great site and I am sincerely offering to help in any way I can.

Don DeGroat

Lightwisps

 

[DLawson]

Chronic pain sucks. One perspective to keep in mind is that just about everything in pain management varies drastically from person to person. Something that did nothing for the one person you talk to may work wonders for you, an vice versa. Frustrating as hell. It's a constant process of adjusting, adapting and recalibrating.

I started on this at 11, and I'm 48 now. So to me it is just life. Good days and bad days, and lots of "if I do that, I'll hurt for days" tossed into the decisions.

I wish you well in finding and keeping the comfort zone.

 

[gr82bart]

Hey Sean,

Just reading this today. My thoughts and prayers for you.

Regards, Art.

 

[Photo Engineer]

Sean;

You have my best wishes. As a sufferer of severe osteoporosis, I have just a hint of what you may be going through. I hope that they can find a way to slow it down or relieve the pain or both.

Ron

 

[Mark Fisher]

Sean, I hope you find relief somehow. My wife has severe osteoarthritis. The first surgery for it she had (at about your age) was spinal fusions of about 3 vertebrea. She later ended up with two hips and two shoulders. It is a tough road, but it is amazing how much the body and mind can adapt. All the best.

 

[Richard Wasserman]

Sean, I just saw this–you have my best wishes.

 

[Sean]

Thanks again guys. I am hoping the MRI will be better news, it will at least give a more clear picture of the hot spots. I have already started to do things that help, for example 3 weeks ago I would always wake at 4am in strong nauseating pain but now I have a memory foam contoured pillow that keeps my head and neck stable, I sleep on my side slightly curved with a pillow between/spacing my legs.. when I roll over I have a new method for that.. all of this combined means I have been waking up with pain but the pain not waking me up. I think the more discoveries of what helps is a big part of dealing with it. I need to find a good specialist too. My GP is amazing but my current specialist is like a robot. My GP has recommended a good musculoskeletal specialist that can work with me on this, not like the current specialist who is "test shows this, this and this. your 5 minutes is up ok bye now". At this point I'm not in constant agony or anything, in the mornings it is bad, throughout the day it is mild to moderate. I just don't want to end up having the morning issues all day. The tests indicate this is inevitable but I will try to head it off at the pass with supplementation and inversion therapy. My heart goes out to the others in this thread far worse off than me.

 

[fotch]

What a bummer. Some of the pills you mention I have personal experience with. Because of bursitis, and arthritis, causing joint pain, my wife convinced me to take daily pills that contain glucosamine, chondritin and MSM, omega oils. They do work for me, help a lot.

Life has its challenges, hope the best for you.

Jim

 

[Curt]

I know what you mean about the pillows, I put a memory foam curved one made to go between the knees and it takes a lot of pressure off the back. Also I put a travel pillow, cheap and found in many stores, elevate my head and when the pain is the worst I use a back brace made of soft plexi, TLSO, or a weight lifter belt. The problem with typing is the tendency to hunch over forward maybe for you some kind of shoulder / upper back support would help. Getting a physical therapist to evaluated the situation is gold. The best of luck with the scan.

Curt

 

[MattKing]

My thoughts are with you Sean.

Would working standing up at a raised work surface (as compared to sitting at a desk) help?

 

[Bob F.]

Although I've not suffered myself, family members have had debilitating conditions like this and I've seen how frustrating and upsetting it can be for the sufferer when they can't live their life the way they are used to doing. My very best hopes and wishes for the future.

 

[ctscanner]

Sean, I just saw this today and wanted to take the opportunity to express my concern for you in this very trying time. As several others have said, there are many of us who have you in our thoughts and are hoping for the best for you.

George

 

[Marcus S]

I am very sorry to hear about your difficulties Sean.
Several years ago, a very close family member was stricken with a life threatening illness.
She heard about how a lack of vitamins in our bodies can have devastating long term effects on the body.
To make a long story short, she opted for a drug free treatment using fairly large doses of vitamins.
She made an astonishing recovery, and has more energy than ever before.
What the body is lacking in vitamins, minerals etc. it will take from the body. If this lack of vitamins is corrected, the body will have a chance to rebuild .
One product is Osteoforte. This is taken with other vitamins to build up the entire body.
Unfortunately, the amazing healing results of vitamins is often not mentioned or discredited by the media, as it relies heavily on advertisers of the pharma industry.
I have seen what is possible the natural way.

All the best to you!

Marcus

 

[archer]

Dear Sean;
I've read all the wonderful responses to your terrible news with tears streaming down my face and now that I've composed myself, I'd like to offer my sincerest wishes for your recovery. Many have recommended Glucosamine and Chondroitin and other supplements which may be helpful. Regarding Glucosamine/Chondroitin, my mother's Orthopedic surgeon, recommends triple the recommend dose for effectiveness in osteoarthritis as neither are dangerous and other than the expense have no known dangerous side effects or drug interactions. When I was in medical school, it was drummed into us that narcotic drugs for pain relief must be prescribed only rarely and as a last resort.... BUNK. After his illness, Dr. Sabin suffered excruciating and unrelenting pain and so spent the rest of his life studying pain relief with the same intensity he put into his Polio vaccine, and his conclusion was that addiction is only possible in the absence of pain. Please consider and talk to your new specialist about the importance of pain management as it is the pain that is the most debilitating aspect of illness.
Sincerely,
Denise Libby

 

[ricksplace]

Lots of well wishers here who just want to help, so I guess I can chime in here too. It might be a good idea to consult an occupational therapist and/or an ergonomist regarding your work station. I have been in the Human Resources Field for 30+ years, with the last 20 as a Professor. I have seen some truly amazing results from something as simple as keyboard/monitor height, footrest, chair design, etc. One of my grads is training now to be an ergonomist. His undergrad degree is in Kinesiology. People often focus on the body and the condition and the medical treatments while forgetting about day to day activities that can exacerbate or ameliorate the condition.

Best of luck Sean, we're all thinking about you.

 

[Sean]

Thanks again everyone, I'm taking all of your kind thoughts and many great suggestions on board. This morning was the first time in nearly two months I could get out of bed without gritting my teeth and nearly hyperventilating (I think several here know what I'm talking about!), so hopefully it isn't a fluke and many of the things I'm doing to fight it are slowly starting to help. So far today things are just mild so I'm feeling recharged and ready to get caught up on a lot of work Will post some updates when I get my MRI results. Thanks again, part of me feeling better is thanks to you.

 

[Craig Swensson]

Sean, everthing i think and feel has already been expressed far more eloquently than i could hope to acheive, all that is left is to wish you and your family the best with this situation, which going on your acheivements so far, i am certain you will attain.
regards
CW

 

[Dietmar Wolf]

My best wishes Sean.

It is good to have people/friends/family one can talk to. Next to doctors.

I do hope everything will turn out well.

 

[Jeff Kubach]

Sorry to hear this, Sean. Best wishes.

Jeff

 

[Nicole]

Hi Sean, I'm very sorry to hear about your battles. Arthritis is dibilitating and if you remember that car/bus accident I was in back in 2006, my smashed ankle still gives me a lot of grief today. Take every day as comes. Swimming is great therapy and worth sticking to long term, if you can manage it. Here's to a better day tomorrow.

 

[Ed Sukach]

Sean...

Really sorry to hear about all of this ...

Possibly I can help. I am NOT a "Bible Thumper" !!! _ I am probably the worst evangelist in the world... but even so this mAY help.

I have been diagnosed with some rather severe problems, four (4) varieties of cancer (myeloma, lymphoma, bone, and prostate); total renal faiure; at one point, congestive heart failure; severe anemia ---

The day I learned of that diagnosis was the blackest I've ever experienced. I kept thinking "I am going to die from all this." - a thought that would not leave me.
Until... something else - another thought - "took over": simply "Maybe not."
I realized that no one could predict what would happen - I might as well die in an automobile accident, or get hit by a meteorite in the parking lot.
When? No one could predict that either... the doctors can't and WONT try.

So - I don't know how, or when. Realizing that, nothing had changed.

It would be up to what I call a Supreme power, "God".
What will happen, WILL happen, according to God's will, according to God's plan, and in God's time.

Some time later, I died during a normally routine procedure, a heart biopsy, where a catheter was inserted into my heart, through a blood vessel in my thigh; the purpose being to obtain a sample of heart tissue. Unfortunately the catheter pierced a ventricular wall, my chest filled with blood, and my heart stopped. They had to crack my chest, drain, and repair the damage - and restart my heart.
Four days later, I was discharged from the hospital and returned home.

Now - I feel GOOD! Probably much better than I did before all this trouble began. I' too had some severe back problems (herniated 4th and 5th Lumbar
vertibrae), which seemed to "go away" with the regulation of my blood electrolytes.

The only advice I can give is to try to listen to you body. If something hurts (you'll have to disover your own "alarm' levels), give it rest. Be kind to to yourself. Realize that there are many working very hard (if it was not for one doctor who would not accept the decision to "give up" on me ...), and there are many praying for you ... including me.

 

[Early Riser]

Sean, sorry to hear of your situation. I've had severe back issues for many years now, 4 herniated discs, so i can sympathize with what you are dealing with. Life will go on, you'll just have to adjust, but I'm sure you're well aware of all that.

I can recommend something that helped me, and it might be of benefit to you. It's called the Alexander technique, and while it won't help with the arthritis itself, it might help you adjust to some of your limitations and might also make the symptoms less obvious to you. The alexander technique is basically about using your body properly. Something which most of us never do and suffer long term as a result of. The technique itself is not invasive in any way, it is all about doing things like sitting properly, standing properly, posture, etc. Common sense stuff, but the stuff that we all seem to ignore. And while it won't treat anything, it's use might decrease the motions and actions that cause you to feel acute pain. I still have my 4 bad discs, I just learned how to not piss them off. And unlike physical treatments, once you get the hang of the technique, you don't need to go back. So there's little to lose.

In any event, I hope that this new challenge is one that you master, and I wish for you and your family all the best.