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

They Were Wrong

Not long after my diagnosis my brother came to see me. He spent a couple of hours reassuring me that while these diseases may ravage and take my body that I am so much more than the body I reside in. Nothing can take away who I am. I believed him and took great comfort in those words. I was indeed more than my shell, I was more important than my ability to do housework, do laundry etc. ...all of the things that people love about me are still here. This same message was given by just about every member of my family and the majority of my close friends. Today I realized...THEY WERE WRONG!

These diseases have changed how I react and I quickly become overwhelmed, I have to say I do not like the changes. I am becoming somebody that I don't like.  Worst of all I don't know if there is anything I can do to change it and that scares me more than all of these horrible diseases combined.

The most important roles in my life are those of being a mother, wife, daughter and sister. I cherish those roles and they mean more to me than words can express. I have the most amazing children, husband and family. All of these relationships have changed and not for the better and the cause lies with me.

I am not sure if it is the chronic pain, my medications, the depression or the actual diseases themselves but the changes are clear. The three biggest changes are that: I have no patience, I have no tolerance for loud noises and my needs lead me to isolating myself from others. Lacking patience when you are the parent of young children is not good. Lacking patience when you have a child with a severe anxiety disorder and ADHD is unacceptable. It can result in my yelling which before all of this rarely happened which leads to upset children. Yelling at children is not something that I believe in and is a very ineffective parenting tool. What disturbs me is that it just happens. It is an automatic reaction/response to what is before me. I have to find a way to control this automatic response because it is something that I am very uncomfortable with.

As for loud noises it can be wonderful laughter, kids too excited running and playing, it can be the kids arguing, a crying baby, too many sources of noise (tv or music in the background, people talking, kids playing) and it creates an immediate response of upset and confusion. I just can't manage it at all. I have often left a room in tears to go to a quieter place (usually my room or outside on the deck if the house is just too noisy). I feel like a kill joy, they are just having fun and I want them to be happy and to have fun but I cannot tolerate any noise..ugh

As for the isolation it can be for a variety of reasons:  be as a result of the noise, it can be the pain is at an unmanageable level and I need to go lay down in the quiet, it can be my hips that cause such pain from sitting or walking through out the day that I need to lay down (this usually happens by 8pm most nights). As for reaching out to others (family and friends) I rarely pick up the phone anymore to call anyone. This upsets my mom more than anyone and I hate that. I have nothing to add to conversation. I go days and sometimes weeks without leaving the house other than for dr's appointments. I am sick of talking about my illness and treatments and well if I am honest, I just don't make for good company right now. I want/need to be alone.

My daughter (the youngest) has her own challenges with a severe anxiety disorder and ADHD and has required an extremely high level of support for the last three years. She can be so high needs that some times it has felt as if she just sucked the life out of me and that is when I was healthy. My patience was very much needed and appreciated to provide her with the level of support she requires. She is not used to me being overwhelmed, putting myself on time outs or yelling and with her issues takes all of them to heart.

Returning to school is one of the most difficult times of year for her. This year as been worse because it has taken two weeks to get her school to put the correct supports in place for her. She is also extremely anxious about leaving mommy at home by herself in case I need help and there is nobody here. I have addressed things with the school once again (3 meetings, one before school started and one each week of school) and they have finally got things sorted out there. We constantly reassure her that I have all of the support that I need with family who all live within 5 minutes of here should I need them. Add to this the fact that she seems to be going through a stage that has her very uncooperative, argumentative and did I mention uncooperative? and add with that no patience, no tolerance for noise and isolation and you have a very unhealthy mix.

In all of my reading about my diseases (Rheumatoid Arthritis, Fibromyalgia, Hashimoto's Thyroiditis) I have never read about the impact on chronic illness on families. How do we help families especially children to understand about these illnesses? What tools / strategies are out there for individuals like myself  to deal with these issues that come forward when dealing with chronic illness?

I hade a conversation with one of the Arthritis Society Social Workers earlier today around all of these issues and she has reassured me I am not changing. If we took away all of my health issues I would go back to the me I know and love. It is a stressful time mourning and coming to terms with all of the changes, the deformities, the things I can no longer do and the number of things I have to find creative ways of doing. She believes I am being much too hard on my self as the incidents are few and far between. My relationships with my kids remain healthy and strong. I have already apologized to them and now that I see the pattern in my behaviour I have the power to count to ten before I react..allowing time to think rather than react strictly on emotion. I know she is right and it isn't as bad as it feels. It is just so unlike me. I think the real issue is that it is such a big adjustment and I am scared that I am going to lose myself in the process watching my body deteriorate.

 Now that these areas have been identified I need to do my best to address them. I really do hope that I am wrong and that I can find a way to deal with these in a more positive way. Right now it feels like I am fighting these diseases and losing...and my family is losing. That doesn't sit well with me.

I would really appreciate hearing any thoughts, insight, feedback, strategies, suggestions or sources for information that you are aware of.


© 2011 Rhonda

Rheumatoid Arthritis What Is It?

 Before I begin today's blog I would just like to remind people. I am a patient who suffers with the diseases that I am trying to share an understanding of. The information that I am sharing is made from notes of my initial research in trying to understand my diagnosis'. I kept mostly to highly trusted sites such as the Mayo Clinic, Web MD, Cleveland Clinic, RAWarrior etc. What I am sharing is my interpretation of my research. Facts as I understand them to be.

As I have blogged in the past Rheumatoid Arthritis is a misunderstood Auto-Immune Disease in large part due to it's name. Most people hear arthritis and assume that it is the same as the touch of arthritis they have in their (insert body part) that comes with a lifetime of use or overuse. This couldn't be farther from the truth. People look at me with wide eyes when I ask if their "arthritis" is treated with Chemotherapy and Antimalarial drugs? Does your arthritis have a high mortality rate? This shocking approach usually grabs their attention enough that they are now interested in hearing what I have to say and an opportunity for RA Awareness and Education is before me. I appreciate any opportunity to help others to try to understand. Support Groups, Forums, Blogs etc. are full of people wishing for more understanding and less judging. While only people who experience RA for themselves will truly understand what it is like to live with it on a daily basis it is important that others try to understand as much as they are capable of. This is so important when it comes to family, friends and caregivers. People who have RA want and need to be heard, understood and most of all to not be judged.

Rheumatoid Arthritis 

• Is an Auto-Immune Disease that causes chronic inflammation of the joints and in severe cases organs. Essentially in Auto-Immune Diseases your immune system attacks healthy cells. It is a systemic disease and affects the entire body.
• Chronic pain. The pain is constant and has been described as an ache, sharp stabbing pains, radiating pain and burning pain. I am sure there are even more ways to describe this pain than I have covered. All in all the pain is difficult to describe and more difficult manage. Needless to say this type of pain can be debilitating. I have gone 11 months and not had one pain free day and have been told in most cases I can expect that I will never see a pain free day again. I cannot tell you what living with chronic pain is like. It is something that you can never understand unless you are unlucky enough to live with it. Pain is sometimes treated by your Rheumatologist but more often is treated by your family doctor (primary care physician) or through a pain clinic. In my case we have tried many different forms of pain relief and the only medication to this point that helps to take the edge off the pain is oxycodone which is a narcotic. I have come to realize that regardless of how you manage your pain, the best you can hope for is to take the edge off so that you can put it on the back burner so that you can function. In months before I found oxycodone the pain was so intense that I could do nothing and think of nothing other than that all consuming pain. I hope this is something that you never have to experience.
• Inflammation is a hallmark symptom of RA. It causes swollen, painful, hot, red joints. Not everybody experiences the same kind of swelling or to the same degree. This can confuse things and make it more difficult to diagnose. It is possible to have RA and have very limited swelling. In my case I experience more puffiness than actual swelling.
• Stiffness. Those with RA have stiffness of the joints. In the mornings or after long periods of inactivity (usually 30-60 minutes will do it for me) our joints become stiff. In the mornings it can take upwards of an hour or more to work the kinks out and for our joints to loosen up.
• Chronic Fatigue is also an issue with RA. Always being extremely tired and waking just as tired as we were when we went to bed is common. Sleep issues are also common which do not help with the levels of fatigue. Waking in the night in pain, not being able to get back to sleep or get comfortable are also issues. Medications such as methotrexate which is a common DMARD (Disease Modifying Antirheumatic Drugs) and usually the first medication prescribed to treat RA which is a low dose chemotherapy drug causes/increases fatigue as well. The constant fatigue limits what we are able to accomplish in a given time period and resting/naping is often required. It should also be noted that while the average person requires 8 hours of sleep. the average RA person requires 10 hours. Medications are often prescribed to assist with getting restorative sleep. Sleep studies are often performed to ensure there are not sleep issues such as Apnea that are causing lack of restorative sleep.
• Depression, Anxiety, Stress and Emotions that are all over the map are common in people with RA. Being diagnosed with a chronic disease that is debilitating, causes deformity and joint damage, changes what you can do, how you do it, the constant fatigue and chronic pain are known to take it's toll. It is also not uncommon for periods of hopelessness, thoughts of suicide, anger and guilt to surface. If you or someone you know is suicidal PLEASE REACH OUT and GET HELP. Remember to keep talking. Expressing yourself in a journal, blog, on-line community really can make a difference. I highly recommend seeing a Social Worker (Arthritis Society has some very knowledgeable and helpful social workers on staff), Psychiatrist, Psychologist or Counsellor to help you work through your feelings around chronic illness. Note: The difference between a psychiatrist and psychologist is the ability to prescribe medication. There is no shame in reaching out for help to learn how to manage your illness and your feelings.
• As with most auto-immune diseases women are three times more likely than men to develop RA. Approximately 1% of the worlds population has a diagnosis of RA. Of that 1%, approximately 25% will have a severe form of the disease. Most often the disease is diagnosed between the ages of 30 and 60. However children can develop the disease and be diagnosed with JRA. Sadly you are never too young to develop Rheumatoid Arthritis.
• Rheumatoid Nodules are often found in people who have a severe form of the disease. My nodules (I believe I now have a grand total of 36 between my hands and feet) presented before treatment and helped to diagnose my RA. Although some medications (Methotrexate is one) that are used to treat RA can cause nodules. In this case my understanding is that the nodules do not represent the severity of disease activity but are a side effect. When nodules form as a result of medication the medication is usually discontinued. Nodules are lumps that form near damaged joints and can vary in size being the size of a pea to the size of a walnut. They can be hard or squishy, some move others don't. Nodules can be removed surgically but often grow back within just a few months. In most cases they are not painful but are often tender. They can have tendon involvement. Be sure to mention development or changes in nodules to your Rheumatologist.
• Symmetry is important for a diagnosis of RA. What happens on one side of your body is mirrored on the other. This means if the fingers on your right hand are impacted so are the fingers on the left hand. Sometimes it takes a day or two to catch up but it is extremely rare for it to involve only one side of the body. In my case even my nodules are symmetric. Sometimes it takes 24 hours but I will develop mirrored nodules on the opposite side in the exact location of the first. This is the one piece of the disease that amazes and saddens me at the same time.
• For the best prognosis when RA is diagnosed early and aggressive treatment is required. The goal of these treatments which are harsh in their own right is to slow the disease progression down so that it does not reach your organs. 
• Mortality - It is commonly accepted that the lifespan of an individual with RA is shortened by 10 - 15 years depending on what you read. Organ involvement (lungs and heart are most common) are one of the causes of the high mortality rates in patients with RA.  Other causes for the high mortality rates are the systemic inflammation which accelerates mortality and of course there is less preventative care. It is not unheard of for Cardiologists to not even be aware that RA can cause Pericarditis which is an inflammation of the pericardium. Respiratory causes, are a significant contributor to excess mortality in patients with RA ranking as the second major cause of death in the RA population. A number of pulmonary manifestations are associated with RA. The most common is interstitial lung disease (ILD) which leads to pulmonary fibrosis (PF) during which the lung parenchyma is involved. In my books these are all really good reasons to take the medications to try and cut down on these risks and if we can't stop the disease then we can at least slow it down so that we do not suffer from organ involvement any sooner than necessary!
• RA is diagnosed by medical history, exam, review of symptoms, blood tests, X-Rays, Ultrasounds, MRI's and any combination there of. It should be noted that there are large numbers of people such as myself who are seronegative. This means that our blood tests do not show the typical signs of RA. In my case my Rheumatoid Factor (RF) is normal, my ANA, Sedrates etc. are normal. The only marker I have in my bloodwork is the Anti-CCP which was more than double the acceptable limit. This is the one test that accurately is used for determining RA to my understanding. Interestingly enough you can have a positive RF and still NOT have RA...Confusing or what! My Rheumatologist explained to me that my Anti-CCP was a predictor that I would develop RA (usually within 10 years) but it was my symptoms and nodules that clearly indicated that my RA was active.
• Everyone with RA is hopeful that one of their medications will allow them to go into remission (a state where the disease is inactive). Remission is elusive and only reached by approx. 1% of all people diagnosed with RA.
• In the beginning stages RA is an invisible illness. Even as the disease ravages our bodies the damage is often only noticeable when pointed out. Eventually the chronic pain, inflammation, nodules and damage to joints becomes apparent. While we are at the invisible stage we are often met with people who do not understand the severity of pain, fatigue and limitations that we face daily.
• Reduced range of motion, increased pain, joint damage, muscle weakness etc. become more noticeable as we rely on canes, wheelchairs, wear splints, our gait changes (often walk with limp) and we look for other creative ways of dealing with the results of our illness. There are many visible signs of RA that I will cover in another blog.
• Surgery is often in the future of an RA patient. Joint Replacement (Hips, Knees, Shoulders are common), Joint Fusion which straightens joints that have been damaged (fingers, toes) and general arthroscopic surgeries to clean out the debris from the damage that is occuring.
• Loss of Mobility is the hardest part to get used to for a number of RA patients. The damage and inflammation take their toll and patients often rely on canes, scooters and wheelchairs to get around. Mobility is affected by the many foot, knee and hip problems.

I think I have covered the basics of RA and hope I have not left anything out. If you have any questions or see any errors or omissions please let me know! How does RA impact your life or the life of a loved one? What is the hardest part for you?

© 2011 Rhonda

Spoon Theory

I had a very dear friend send me a link to something called spoon theory. For the first time since I became unwell I found the words to explain what I am experiencing. For anyone who has an auto-immune disease (Lupus, Fibromyalgia, MS, Chronic Fatigue, Rheumatoid Arthritis etc.) or knows someone who does please be sure to read this. It will help you to better understand and for those who are experiencing it, you may now have the words to explain to family, friends, co-workers and even help yourself to put things into perspective. I cried for almost an hour after reading this. I hope you find as much value in this as I do. With love and understanding www.butyoudontlooksick.com/the_spoon_theory

In other news:

I saw my family doctor - Dr. B today for the first time since my fibromyalgia diagnosis by the specialist he sent me to Dr.M. He is pleased to hear that they are continuing to look at Lupus and Rheumatoid Arthritis as be believes I could possibly have both and wants them ruled out. They are both from the Arthritis Family as is the Fibromyalgia. I am not liking the 25mg of Amitriptyline Dr.M prescribed last week but Dr.B is really wanting me to be able to tolerate it. He has told me to cut the pill in half and to take it at dinner time vs. bedtime so that I am not hungover in the morning. He wants me to do that for one week and then to add 25mg of Lyrica at 9pm. These medications are to assist with restorative sleep and to manage chronic pain (their original use was to treat chronic depression but those doses are much higher starting at 100mg) and should get rid of the insomnia. There is a third medication Cymbalta that he will look at adding when I see him again in three weeks. He was at a symposium with a Fibromyalgia Doctor from Lavalle, Quebec just a few weeks ago. This doctor claims that Amitriptyline, Lyrica and Cymbalta along with an exercise program (20 minutes of walking or stationary bike daily) for 3 years will CURE Fibromyalgia in 95% of patients. He is the only Doctor who believes there is a cure and claims of 95% success rate in curing Fibromyalgia. As my doctor said there is nothing to lose by trying.

He also increased my thyroid medication to 100mcg's and changed my pain medication to allow me to manage my own dose as needed within a higher daily range. The pain has not been managed at all in the past few weeks at my current dose/range. When the pain is this bad you cannot think of anything other than the pain and thinking is a strong word considering the brain fog that goes with it. Everything you do seems to make it worse. You cannot do anything including sleep when the pain is this bad. I have never imagined that kind of pain existed. When the pain medication is working, it doesn't get rid of the pain rather it puts it on the back burner. It is always there but not in the forefront so that it allows you to be able to think and focus on other things. It is difficult to explain. I can't believe it is almost 8 months living like this. At least I am beginning to get some answers and to understand what is happening to my body and why I have such intense pain from head to toe. I have not had a single pain free day in all of that time. If Fibromyalgia turns out to not be curable then I will not see a pain free day again in this lifetime. That is a sobering thought. I have to believe that there will be a cure if not today then within my lifetime. I keep reminding myself when I feel overwhelmed like this that attitude is more than half the battle. Staying positive really helps!

Wishing for sleep before 3am tonight. Given the way I feel right now it might just happen :) I am tired of being exhausted, not being able to sleep until the wee hours of the morning and then waking up just as exhausted if not more than when I went to bed the night before.

Have a good night everyone! Here is to sleepy nights and rested mornings.

© 2011 Rhonda