Grape Ape: Part II Adapting to RAD Disease

My life must now adapt to this disease and its limitations.  Scott and I have to make “new” retirement plans. Our original plans were to sell out, buy a piece of property in Kentucky with a meter pole, well and septic tank and spend a few years full timing in a very large RV. Mosey through the west up to Alaska, work and ride a while.  Eventually settling back to Kentucky…the crossroad state of RVn nirvana, basically 8 to 10 hours from anywhere!  I want to see my flyover states…the Grand Canyon, Mount Rushmore, ride route 66, and visit Oklahoma one more time.

Maybe not.  Alaska is too cold for me.  Probably not even Kentucky. Did I mention, I’m not that crazy about Florida or Arizona, even though both states have great weather for RAD patients? And forget riding.  I can barely ride to Macon and back without stoving up for days.  So we “adapt” our retirement plans…I just don’t know to what yet.  And I keep hoping for some new miracle drug.

Treatment (Just call me Dr. Thorpe)

Hmmmm.  This one gets me in a lot of trouble.  I am currently self-treating.  Prednisone as needed along with some Aleve.  I stopped the methotrexate injections to have a surgical procedure in April.  I started the injections back up in June only to have “side effects” return.  So, I am currently seeking ALL new doctors. It is my treatment plan and I can fire my RAD and gyn doctors if needed.  (Note: Methotrexate also thins the blood…no slicing and dicing when injecting.)

Yes, I need to get back into treatment.  I am well aware of how the disease is beginning to affect additional joints that were just fine six months ago.  Bear with me; it is difficult to return to a life of nausea, tiredness and hair falling out. 

Disease Progression

Is it worse? Probably.  I’ve developed sjogren’s syndrome, a kissing cousin to RAD.  The dry mouth has gotten really bad the last few weeks.  I long for a real crushed ice machine.  I keep water or tea with ice to drink all the time, especially at night.  Cotton mouth is yuck!

My joints burn similar to the sensation of having a foot asleep.  You know when it starts waking up and your nerves tingle and burn at the same time?  Except for its bones and joints that burn.  Shoulders, elbows, knees, toes, fingers.  Are you singing knees and toes, knees and toes?  Ha!

I have a large RAD nodule on my right arm near my elbow.  And I basically can’t bend my right wrist at all.  My fingers still work.  So as long as I can type and 10-key, I guess I can still hold down a job.  I joke with co-workers about developing a num pad for my feet.  Bet that would burn some calories!

The numbers tell me that I really need to work for at least another 5 years. That is my short term goal.  Sometimes my body tells me something altogether different.  If I’m lucky maybe the two will meet in the middle.  But, I’m still hoping for some type of new treatment that leads to a true “remission”.

Future Treatment Plan

·       Find another doctor or group of doctors that treat the entire RAD, not just the symptoms.

·       Weight loss…got to get some lard off these joints

·       Exercise…it is soooo hard when I’m tired.  I’m going to start walking more as soon as it cools off.  I also need to get my treadmill repaired.  Repairman suggestions?

·       Stress…less stress.  Much less stress.  Hear that darlin’ daughters? LESS STRESS.

·       More Rest. 

 

I have finally admitted that RAD affects everything that I do. Umm EVERYTHING.  I can brush my teeth with my left hand, brush my hair with my left hand and even have keyed financials with my left hand.  Now that’s adapting.