Just stumbled across this board-glad to have found you guys :)

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Veteran Member

Date Joined May 2012
Total Posts : 1114
   Posted 5/31/2012 11:32 PM (GMT -6)   
Hey all:
I found this message board while getting an infusion.  Glad to have found you guys.  I'm a 35yr old single mom to an 8yr old boy.  I've lived with chronic pain for most of my life.  As a kid I was diagnosed with Still's Disease aka Juvenile Rheumatoid Arthritis.  I was lucky in the fact that my dad was stationed in the DC area so I received top notch care.  My drs were aggressive from day one which allowed me many more years of relatively normal living.  These past 5yrs have been very very difficult.  Most people don't realize that JRA can affect one's organs.  Unfortunately, I am a walking example of this fact.  I have eye damage due to chronic uveitis, intersticial lung disease, a gj tube due to gi involvement, and often have bouts of pleurisy and pericarditis.  I spent the month of April inpatient on 100mg of pred to get inflammation under control.  Due to the lung/heart involvement, I take high doses of steriods which has caused Cushing's.  Lovely....
I've had 10 surgeries over the past 2yrs.  The most invlolved one was replacing both sides of my TMJ's.  The JRA was destroying the joint, and my body was trying to fast to heal the damage.  The bones were fusing together leaving me with an opening less than 10mm.  Surgeon was very upfront about the fact that the surgery was for function only, not for pain.  I would probably be in more pain after the surgery, but at least I would be able to talk fairly normal.  I used to be a biology teacher but I had to give that up since I can't talk clearly for an entire day.  I really really miss teaching.  I was an awesome teacher-no modesty there.
I am extremely lucky to have an awesome network of family and friends to help me out.  My son is obsessed with sports which is great for me.  I can sit on a sideline or a pool deck and let someone else wear him out.  I've made great friends with some of the other moms.  When I'm inpatient, they make sure he gets to practices and whereever else he needs to go.  My family also does the same.  They keep his schedule pretty much the same so he still has a since of normalcy even when I'm not home.
I also have a wonderful pain management dr.  Due to increasing complications, my local rheumy referred me down to Duke which is 3hrs away.  When it came time to replace the jaw, Duke referred me up to MCV which is also 3hrs away in the other direction.  This means quite a bit of driving to/from appointments.  My pain dr is local and often acts as the middle man between the hospitals.  In the beginning we tried injections to help with pain, but realized more was needed.  I was running very high blood pressures and very tachy.  I did a month long halter monitor which showed that I averaged a pulse between 130-150.  Definitely due to pain.  Cause of my gi issues, we are trying to keep the doses of narcotics as low as possible.  Right now I take 5mg of dilauded and baclofen for the jaw muscle spasms.  I've been told to expect to be on some sort of pain med for the forseeable future.  The TMJ replacments involve a ton of titanium and screws in a very small space with a ton of nerves. 
JRA wise-I've been up and down the med ladder.  Today I received my first dose of Cytoxan.  This is really a med of last resort and it's being used off label.  Dr is hoping it will calm down the lung inflammation and vasculitis that I've been dealing with.  More side effects with this med than any other that I've used.  Many of them are effects that may not appear for years down the road.  I'm ok with that. My son is 8 and needs his mom now.
So-I'm glad I found you guys.  I plan on reading posts and hopefully I'll have something to contribute.  I'm incredibly lucky to have assembled a great team of drs-even if it involves driving up and down the interstate.  One thing I've learned is that a good dr is hard to find, much less a whole team of them.

Regular Member

Date Joined Nov 2011
Total Posts : 212
   Posted 6/1/2012 12:22 AM (GMT -6)   
 Hi Rocckyd. I haven't been on the Chronic Pain section of Healing Well but a few times and can say there's alot of good people here that are knowledgeable and willing to help. I see that your kid is your top priority "kudos"! Hope you get your pain managed as it sounds like you have plenty to deal with! Good Luck!!!

Veteran Member

Date Joined Aug 2008
Total Posts : 3193
   Posted 6/1/2012 1:24 AM (GMT -6)   
Hey Rocckyd,

Welcome to HW and the Chronic Pain forum. I'm sorry you are dealing w/ CP and other health issues, though.

I'm so glad to hear you have a strong support network. It makes such a difference - especially when you are sick and have children. I understand this all too well.... and I'm also blessed to have a group of friends and family that help so much when I'm hospitalized... or in a bad flare... etc.

And it also is great that you have a good team of doctors... it's so important.

Anyway, it's late and I need to get to bed.... but just wanted to welcome you.. and I hope to get to know you better. :)

Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

White Beard
Forum Moderator

Date Joined Feb 2009
Total Posts : 3702
   Posted 6/1/2012 1:39 AM (GMT -6)   
   Welcome to Healing Well Chronic Pain Forum. All I can say is WOW You have really been through the mill, and I am really sorry that you have to go through all this! You have come to a really good site, and I think, and I hope that you will find the folks on this site helpful to you, we might not be able to cure you, but we definitely can lend you our ears and listen to you, I think you will find that the folks here are extremely kind and caring and compassionate, and will always do what ever we can to be of help to you!  One thing we all have in common is we all are living with chronic pain of one type or another, and with that, we really can  empathize with each other! That is important, it makes a difference,  when you talk about your pain here you will be heard by people that can relate, to what you are going through. When you are hear you are not alone with your pain!
rocckyd your post was very touching to me, I have a daughter about your age, you are so young to have to endure such pain. I do wish I could say or do something that could ease your pain and help you get better.  You do have my ears as I am sure, you do everyone elses here. So if you ever need to vent your frustrations of just talk about your condition.  We are all here for YOU!
I wish you all the best!....White Beard
Moderator Chronic Pain
After spending nearly 22 1/2 years in the USAF, I retired in Sept, 1991. I then went back to school and became a licensed RN in 1994, and I worked on Oncology and then a Med Surg Unit, I became disabled in late 1999 and was approved SSD in early 2002!-- DDD, With herniated Disk at T-12 and L4-5. C5-C6 ACDF in Sep 2009, C6-C7 ACDF in Mar 1985, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!) Medications:Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV I am White Beard with a White Beard!

Forum Moderator

Date Joined Feb 2003
Total Posts : 16773
   Posted 6/1/2012 7:34 AM (GMT -6)   
Hi Rocckyd and welcome to the chronic pain forum. I am like Whitebeard, after reading your post you really have been through the mill starting at a very young age. Every person that comes here has a story to tell of some kind.

I think its wonderful that you have such a good support base in place with family and friends, that is so important for you and your son. Its just a relief knowing there is someone available for backup when needed.

As you mentioned you do some driving to see your drs but like you said as long as the dr is worth the drive that is all that counts. Good drs can be difficult to find.

Anyway, I wanted to pop on and tell you hello and welcome aboard. Take care...Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

Veteran Member

Date Joined May 2012
Total Posts : 1114
   Posted 6/1/2012 5:26 PM (GMT -6)   
Thanks for the warm welcome.

I actually consider myself lucky that I was diagnoased at such a young age. I've never really known it any different. Grew up, went to college, got married, taught biology, got divorced....while having medical issues. I really feel for those that have lived life one way and then suddenly have to adjust due to sudden illness or injury.

I do hate the driving. Today was especially crazy driving back from Duke due to the weather. Many tornado warnings. Hate it when that happens when driving cause I'm never entirely sure where I am. Everybody else stayed on the road so I figured they knew more than me.

Regular Member

Date Joined Jan 2011
Total Posts : 374
   Posted 6/1/2012 7:27 PM (GMT -6)   
Hi Rocckyd, so glad you joined us...and sorry that you have the problems that you do!

I've been dealing with back pain issues for a year and a half now, and I live in a rural area so I can empathize with having to drive three hours away to get help for things. It's really exhausting, but I am lucky to have family that can drive me places, because I have trouble sitting up to drive and three hours would be impossible!

Please keep us updated, and thanks for posting. I wish you all the best! :)
--Patrick, aka Misterkatamari

I'm active on several boards. Main issues are: Chronic Pain due to Scoliosis & 2 Herniated Discs, possible DDD and arthritic facet joints. Also active in the Depression/Anxiety boards. Meds include: Prozac 40mg, Xanax .5 mg, Tramadol 50mg

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” - Joseph Campbell

Screaming Eagle
Veteran Member

Date Joined Sep 2009
Total Posts : 5005
   Posted 6/2/2012 8:08 AM (GMT -6)   


    Good morning Rocckyd!

        I wanted to get in a warm welcome to you as well! wink   I read with great interest about your TMJ problems, as I suffer from that as well. Thanks for posting about the replacement. It is the first time I had heard anyone having this done.

    Again Welcome, and we look forward to more visits from you!

      SE wink

Moderator Chronic Pain Forum

Weekly Quote!

"Getting over a painful experience is much like crossing monkey bars. You have to let go at some point in order to move forward."
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