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Posted 6/29/2015 9:29 AM (GMT 0)
Happy Monday to all and hope everyone had a good weekend. Well here we are heading into the last week of June and the official beginning of summer. Short week with government offices closed Friday in observance of the 4th which falls on a Saturday this year. Would love to hear everyone's plans for the 4th and if you are traveling be safe AAA projects the busiest 4th since 2007 due to gas prices and the weekend holiday on air and roadways. In light of that I stayed home when my family flew home Thursday for vacation!! Ahh my kind of vacation, no one but me and my teen who had to work, dog, cats and no responsibility for 10 days without the grandkids!! This big old house is mighty quiet.

This is check in where we meet each Monday to say hi, share your weekend news and what the week ahead holds for you whether its appointment or procedure or just something you wish to share. So welcome new members to the forum and your first of I hope many, Monday check-ins.

Unseasonably hot here in Florida so much of my days are spent indoors or in the pool since I don't do heat and humidity well. I definitely am benefitting from the extra pool time!!

Hoping everyone has a great low pain week and a weekend filled with family and friends and remember the reason for the celebration.
Posted 6/29/2015 3:51 PM (GMT 0)
Good morning all..

Vickie - know you will be enjoying your 'stay-cation'!

Suppose to be only 80 today.. cooler than majority of last couple of weeks.
Recent record-setting rainfall has alleviated dry ground but some folks will be cleaning up today after flooding.
(Am located just south of Mason- Dixon line)

Nothing new -
No plans for 4th.
Someone may have a cookout & invite me. Otherwise I can stand on deck & watch neighborhood fireworks.

going to be researching steroids, etc as my P M dr wants to use them as opposed to the lidocaine. My previous PM used steroids & I had several adverse reactions - dangerously hii bp, light sensitivity, dizziness. Current dr told me he uses 'natural' steroids so I cannot have any reactions. That " it must have been additives".
Maybe / maybe not.
He is going to have to prove that before I agree to doing that again. Clast time i came close to being transported to hospital as staff was concerned I might have stroke.

You'll stay cool !
Posted 6/29/2015 5:08 PM (GMT 0)
Diane B: I've been on steroids continuously for over a decade. I'm usually on pred, but occasionally I'm switched to dexamethasone. It's supposed to be easier on the kidneys and a smaller dose is needed to accomplish the same as pred.

Acthar is another med I've used and it's like a pre-steriod. Only downside is that it's an injection, and while my copay was $40, insurance was billed $75,000.00. KRAZY!

Had PT this morning-really having a rough time. Pain is winning the battle today. Had to end PT early because I got super pale and broke out in a cold sweat. No Fun. I see my pain doc today and hematologist Wed. I have a phone appointment with me Duke crew later in the week.

I hope everyone is having a good week and I hope you guys have a fun 4th.
Posted 6/29/2015 5:59 PM (GMT 0)
Thanks for the info Rockyd ! sorry you are in so much pain, especially today hon..

$75,000 is insane! There was a recent news show about some doctors 'going on strike', refusing to use certain cancer medications, that they said pharmaceutical companies were charging 10x - 20x $$$. Solely to extend lives for a matter of months - not to improve quality of life or to cure. Interesting.

For myself, (aquatic) Physical therapy is essential but (workman's comp) insurance co stops approving whenever I don't show improvement, no matter how restricted my motions are, or how much pain I am in. (despite fact that ?Medicaid or is it Medicare? Now recogniizes & approves therapy for joint issues like arthritis ) anyway, my therapy is off & on.

No blood work has ever been done to check for possible damage to my kidney, etc. from long term use - I've been on various oral muscle relaxers & pain meds since early 2005. So far no digestive issues, knock on wood! Drugs screens ARE done often to make sure I am taking the prescribed meds though !!

Recently I've had sharply increased pain in 2 joints w/numbness in those extremities. MRI have been done, awaiting results.. dr thinks cause is either arthritis, adhesions, spurs, herniated disc, DDD or spinal stenosis.
Posted 6/30/2015 12:03 AM (GMT 0)
Checking in

The weekend, Saturday I got home from work absolutely drained and in pain. Had to lay on ice and take a nap and take ibuprofen. Woke up from the nap and was able to make a foreign exchange students farewell party. Sunday was a good day, I didn't do much but it was low pain. As for today I have cheated on my plans of not cracking a few times. Made it 4 days but I will get back on it. Its tough.

For the week, tomorrow I leave for the Twin Cities to see my niece off for her trip to Europe. I plan on doing the indoor gym trampoline with her before she leaves. So,the next day I might be sore but I think it is worth it. Nothing big for the 4th. Going to the mother in laws for beer and fireworks.
Posted 6/30/2015 3:49 AM (GMT 0)
Rain every day for 2 weeks, and it's cold in the house unless I change over the whole system to winter. so it's cold at night and in the morning. At least I don't have to mow the fields. Too wet. But I'm having a problem at the waste water lagoons, overflow pipe must be clogged and I can't find it. The bad part is walking all the way down there and back up the hill because the field is too wet even for the tractor.

That's all I need with (causing?) worsening headaches and tiredness. I'm only good for a couple of hours a day. Pain is not being controlled and my pain doc doesn't want to see me for 3 months. I'm going to make another appt with neurologist. I'm occasionally taking half the Klonopin he prescribed for the muscle spasms. I can't ask for more pain meds, but maybe he can look over the old tests or something. I can't think of anyone else to ask.
Posted 6/30/2015 4:45 PM (GMT 0)
The two hospitals and the insurance are still wrangling over getting me in the expanded access trial for the cancer drug I need. Sigh. I need the new drug because the one I'm taking doesn't cross the blood-brain barrier and I have numerous small brain metastases that showed up on an MRI six weeks ago.

On Monday, I had a follow-up MRI to see how fast they were growing. I haven't had any treatment for them, because of course I'm not approved for the new drug yet and I turned down radiation as too likely to have a side effect of dementia.

So I picked up the latest MRI report, and it said the metastases were "considerably diminished," presumably because they'd responded positively to therapy.

But... but.. I didn't have any therapy, not even a steroid. I see my oncologist next week, and I need to ask him what this means, but it's surely good news and buys me some time.

Otherwise, I started a lung rehabilitation exercise program Monday afternoon, which also coincidentally stretches the area around my post-shingles nerve pain. I was actually able to get that arm/side moving more than usual, though it flared up a bit more in the evening, but it's back to normal now. They can put me on exercise equipment that doesn't stretch that area, but I might keep trying it, see if it helps in the long run.
Posted 7/1/2015 4:39 AM (GMT 0)
I'm running late checking in. Recovering well. Post op appointment went well. Go back in 3 months.
Staying in for the 4th. I just don't enjoy the big crowds anymore. Might have a small picnic with a friend.
Hope everyone is having a good week.
Posted 7/1/2015 3:10 PM (GMT 0)
sleepless in oz. bugger. i was doing ok up until the neuralgia decided to bite.
Posted 7/2/2015 3:57 AM (GMT 0)
Hurting big time, had emergency trip up north as my dad had a stroke,. Going up on first leg of flight no problem, coming home big problem left ear has not popped!. See doctor tomorrow and praying for ear relief, ears hurt so bad on the landings, going up is not a problem... need help soon...so very tired as well..
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