Messages By: sprinkly

Hello,

Large misunderstanding about RA (Rheumatoid Arthritis), as being an old age or even an adult developed disease is not true.  An individual can develop RA as a result of family genetics, such as my case.  During age nine, while my parents and I moved from one place to another for work, I was diagnosed with having JRA (Juvenile Rheumatoid Arthritis).  During this time the diagnosing Dr. was puzzled due to he could not understand how a child could develop RA at a young age. But it happened and my family did not during this time present a visible carrier link for RA. For my self to make a long, long story very short.... After multiple moves, each Dr. concluded after multiple repetitions of the same tests, that I had and still have active RA.  Which result in my present bone deterioration.  I have several pain symptoms associated with my arthritis from childhood to present but I ignore them as I have done during early childhood.  One helpful advice I received early on while understanding the meaning behind my pain and stiffness, was to keep moving even during pain.  By using the term saying "use it or lose it". I continue to use my achy stiff joints everyday for everything that I can manage and even for some things I cannot.  I skate sometimes with my young family members during their visits and play at them parks with them knowing full well that I hurt and will hurt later in the moment, hour, day and week.  But to see the expression of their face provides me with joy for those few moments until my joints feel like I've been thrown off a truck, for just walking from the car to the gate (I do not have a handicap sticker, due to RA at such a young age is viewed as non critical).  I feel the pain and stress associated with individuals who feel similarly to the way I feel. But as I have said earlier, pain is a sign of life and "use it or lose it". 

My other physical symptoms seem to coincide with Fibromyalsia or CFS while my blood tests are positive for lupus. My new Dr. keeps giving me the look of how old are you. I guess because the tests say I have the same problems as an older individual would develop after a lifetime, but I have developed before teen hood and young adulthood.

with my own objective on life to keep moving and have nothing stand in my way. I keep treading forward to finish my edu. goals, even though my councilors suggest I should not. 

Thanks for allowing me to vent,

Sprinkly :>

Hello,

Previously I have posted a short message about my history with JRA or adult early development of RA. Well, I have some new news (insightful as good or just more puzzling, still undecided).  As of this past year several new dx's have been made.  First my headaches, which I usually just ignore and sleep them off with cat naps, was dx as migraines and seizures. Second, practically all the major beneficial food groups cause indigestion problems (allergic to them).  Third, finally dx my swallowing problem through an incidental observation by a nurse during an office med visit. Which lead to other tests dx's as a stricture. 

Finished undergraduate school and now I am almost finished completing my masters.

All this stuff ended with 2007. As of 2008 my current Dr. wants me to try a Med trial in hopes that it will slow down my steady progression.  So on the upbeat, new meds will hopefully work, finish graduate school this year, have no other illnesses creep up is my new years resolution.

thanks for allowing me to vent my thoughts about dealing with lifetime of pain, fatigue, frustration

Have a happy new year.

sprinkly

Hello,

Usually I stay with my other interest areas, but this topic lit a spark of interest in me today.  Having individuals stay with family members for a short term period seems acceptable with me. While on the other hand, if the home bound individual is staying at a families dwellings only because they are afraid of facing the true reality of their situation, that individual needs to have a reality check. 

My family and I have lived through a similar situation but for a notable cause and received the outcome result. An older sibling went off to college, while my parents and the I moved to another state for employment reasons.  Soon to find out by the first year end away my older sibling could be found no where. My mother took the first flight off the hunt the sibling down and leaving us all at home with our daily duties (school, work, home etc.).  A few days later she returned home and said she found the older sibling and everything was OK.  Only to be enlightened later, this older sibling would cast a curse over my parents relaxing their leash over me. This older sibling who was an honor student from K through High school, went way into dept, barely passed the courses, etc. O, I forgot to mention when my mother came home this older sibling called and delivered the news of expecting a child (I wonder why, that info was delayed). To make this long story short... The sibling came home with my mothers influence as to helping raise the child.  After the child reached the walking age my older sibling left home again to find a permanent means of employment and finish their education path.  About four to five years later, while the child stayed with me and my parents (I was in high school during this time and continuing into mid college), the older sibling was overseas serving the country.  Through all the photos it is hard to notice the difference between the child related to me more or to the actual parent.  Anyway, by the time the older sibling duty is over the child is almost nine, a tender age. 

Story short... Stuff happens... Sibling made a big mess up.... Sibling cursed other siblings leaving home bound... Sibling came home, raised child with help, while single... Sibling left for permanent work... Sibling came home, took responsibility for raising child for rest of life... Sibling currently remarried and has another child...  First Child still calls "US" his home.

As for myself, this older sibling has cursed my parents (my "mother") into believing I will mess up when I leave. So by keeping me "HOME BOUND" I will never mess up. I will finish school and then have a family. I have tried to reason with her, but it is no use, she wins or she is right no matter what.  Last year I finally received a phone for the holidays. A phone for her to call me while I walk around the block.

Thanks for allowing me to vent... Have a happy new year.