dr visit/new med

Happy Father's Day to all you dads out there, and to all those moms that fill the role of both parents.  I'm a single mom(divorced) with an 8yr old son.  His dad has chosen to not be in the picture, his loss.  A few yrs ago I decided to make Father's Day a fun day.  My son gets to choose the activites of the day.  Our pool has a cookout wtih a DJ and inflatable bounce houses.  Little man is super excited about this and wants to be there as soon as the gates open.  Makes an easy day for me.  I know a ton of people there so I can talk with friends, or read a book.  Yay for summer :)

Saw my pain management dr. on Thurs. He is extremely frustrated with the way things are going.  Both sides of my jaw are very very swollen.  The JRA is still very active in that area.  Since the joints are now titanium, the inflammation is not in the joint capsule.  Instead, it's in the tissues and blood vessels(vasculitis).  This is hard to treat since you can't drain the fluid.  My speech is not as clear since I can't get the muscles to move the way I want to.  He's also concerned about a new problem that has popped up-I'm having a hard time swallowing.  You know that feeling you get when you swallow and it goes down the wrong way?  That's what it feels like.  I end up coughing stuff back up.  Dr. measured my jaw opening at around 11mm.  Very small-I often end up aspirating when I get sick/cough.  I'm the only jaw replacement patient at the practice(as I am anywhere), so dr has no idea as to the cause or what to do.  He had me come back to his office and called my surgeon and put him on speaker phone.  Surgeon hasn't had this problem occur in patients either, so he hung up to call the dr who created/invented the type of joints that I have.  Hopefully I'll get some answers tomorrow.  In the mean time, I'm to use the GJ tube and limit things by mouth. 

Pain dr could tell I was still in pain.  High pulse and bp.  Also obvious swelling in joints.  Pulmonologist upped the pred to 60mg last week due to pleuritic pain, but it didn't help much.  I have dilaudid that I can take 4x a day which helps a bit.  Dr added avinza in the morning.  I've never taken it before(which is amazing after 10yrs in pain management).  How do you guys like it?  The only downside of it is that it can't be crushed and put in the jtube since it's extended release.  We've tried various pain patches in the past, but I break out all around the adhesive.  I need an extended release med, I just have to be careful with the gi issues.

Busy week ahead.  Little man has a soccer day camp at Virginia Tech each day.  It's from 9-12.  We are about 25min from campus so it's not worth it to go home and back.  I'm looking forward to finding a quiet place on campus to read.  Tues I will drive down to Duke since I have an early morning rheumy appointment on Wed.  Next week isn't much better: Drive to MCV(Richmond, Va) to see the jaw surgeon on Monday.  Then Wed I have to drive back down to Duke for a chemo infusion and IVIG.  I'm there until Friday.  I keep trying to convince my drs to meet me at my house since it's halfway between MCV and Duke.  I'd even host a party!  So far, no takers :(

Sorry Rocckyd, I have never used Avinza before. I wanted to tell you that its great that you have the pool and activities available for your son and yourself on Father's Day and at other times as well. I was a single mom for quite a few years and just recently remarried. I have two sons ages 14 and 13, and those years as a single mom were some of the best and worst for us as a family. I remember their disappointment in boy scouts when an unenlightened father who ran a camp would not allow me to come or help out since it was men and boys only. They decided not to go to his events because of this, and that was quite a disappointment to them. I also remember being one of the only single parents at baseball practice, soccer games, and elementary school events. Sometimes it felt like I was an alien, and when my chronic pain became noticeable in my walking or ability to help at games and events, it got even worse. For reasons unknown to me their father has chosen to have nothing to do with them, no matter how many times they call or ask. You are right, his loss.

I don't have anywhere near your swallowing or lung issues, but well remember going to pain management after pain management doctor and them having no clue what to do with me. I have endometriosis, pelvic adhesions from endo and surgeries, IBS, ovarian remnant syndrome, and depression, PTSD, and anxiety. Doctors never heard of ovarian remnant syndrome or endometriosis causing inflammation that causes increasing adhesions (scars) internally that bind all my organs into one and create misery. They just couldn't understand the type of pain I was describing or how to treat it. When I found a surgeon who understood, he directed me to a pm doctor who could help, and things are better now, although I have had to have my right ovary removed 3 times. It has regrown again, so I am on my 4th right ovary and I am 32 years old. I have a long way to go if they keep regrowing from ovarian tissue left in my pelvic cavity. I am one of the patients the doctors make sure all the residents see in the office and in surgery. It isn't always a good feeling, although I try to keep the attitude that its better they learn about what can happen after surgery and in the right conditions, instead of another woman going through years of being told there is nothing wrong with her and she needs psychiatric help.

So good job Mom for doing your best! I hope the avinza helps you. Honestly I admire you, because being a single parent and dealing with medical conditions is not always easy. I hope that you get the relief you need soon.

Mindy

Hi Roc, wow you do have a full plate going on. Sounds like you will be spending some time on the road no doubt making all of these drs appts. Its a shame we have to travel so far for good care but its worth it in the long run. I do hope you are able to get some good results from seeing the drs..

I cannot answer your question about Avinza, although there has been others on here that it helped.
Hopefully it will be something that will help you. Take care....Susie