Health & Homeschooling Update

 So much has happened since I blogged last I don't know where to begin. I have not been doing well hence my absence.

I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual.  He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens.  The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.

My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.

In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.

Due to having Raynauds I've been told that I can only where  socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked me...lol

The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.

It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it interesting...lol This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions.  By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :)  It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.

I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.

On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.

Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.

Thanks for reading and I look forward to hearing from you!



© 2011 Rhonda

Rheumatology Appointment

 Frustration is the name of the game. I saw my Rheumatologist yesterday and I have come home very unhappy with the outcome of the appointment. My first appointment was an assessment and tests. At that appointment she diagnosed me with Fibromyalgia. My second appointment was a result of my test results and I was called in and diagnosed with Rheumatoid Arthritis after I had a High Anti-CCP in my blood work and had developed numerous rheumatoid nodules the week before. I was started on Plaquinel and Methotrexate and a follow up appointment was scheduled for 2 months later. So yesterday I went to my follow up appointment.

I am sad to say that she was more focused on the paperwork in my file than listening to me. I asked questions, pointed out deformities in my feet and the difficulties I have walking as a result of toes that curl under, a big toe that is on a new angle and lays across the toe next to it, the swelling on the balls of my feet making it feel like walking on marbles and the burning in my feet when I stand more than 5 minutes. I have had no improvement in the past two months since I started medication. She completely ignored my feet, assessed my hands, charted and offered a shot in my hip (which I had complained of last time but hadn't gotten around to this time). While giving me a shot in my hip (no idea what it was) I was mentioning the itchy joints that I have, the fact that my hands won't straighten and are in a constant bent position. My bones near affected joints appear to have exploded and are 2-3x the normal size...she continued to ignor everything I said and declared I should go to a pain clinic because my Fibro was out of control, my RA is fine because there is no visible swelling so my meds will stay the same, because of joint and muscle pain she has declared I have amplified pain syndrome.

I come home to research amplified pain syndrome which declared that while the cause of pain is gone the central nervous system retains memory of pain where there is no cause...HOW ON EARTH CAN THERE BE NO CAUSE OF PAIN WITH A DX of RA and FIBROMYALGIA THAT HAS CAUSED DEFORMITY AND DISABILITY???? She  see me back in 4 months at which time they will ultrasound to see if there is internal swelling and I should have an MRI of my hands and feet in that time. They have flagged my file because in 2 months they have managed to not yet book me an appointment. I am extremely frustrated and upset with all of this. I am seeing a top Doctor's at Mount Sinani Hospital in Toronto. Jay Keystone heads up this clinic (not my Dr though) and it is supposed to be one of the top in Canada and IS the TOP Rheumatology and Autoimmune Clinic in the province!!

My family Dr, two weeks ago told me that he could see more changes in my hands and feet since my x-rays (which would have been two weeks after the x-rays were completed) and that he really hoped she started treatment with a Biologic when I saw her as that is my best hope to stop the damage. What on earth am I going to do? Do I ask my family Dr. to make a new referral for a second opinion or do I stick this out for another appointment or two and see if this was just an off day for her?? I just don't want more damage to occur because she is not sure about what to do with me not being a text book RA patient! I had so much more to talk to her about but since she was ignoring me I gave up...Very frustrated at the moment.

Okay rant over...any suggestions would be greatly appreciated!!

© 2011 Rhonda