Wednesday, September 21, 2011

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

Random Thoughts

It is time to bring some visibility to Auto-Immune Diseases. Opportunities to educate and bring awareness are few and far between. How do we bring about opportunities to spread the word about Auto-Immune Diseases?  I would love to hear your ideas!

These diseases are very complex and misunderstood. The symptoms over lap and it can take a very long time and a dedicated team of Dr's to determine the correct diagnosis and treatment. In the case of my Rheumatoid Arthritis finding credible information was difficult. There is a lot of garbage out there and even more false and misleading claims of cures for RA. How do we get credible information out there? The commercials that are on television make me sick, they make it look like this disease is easy treated and patients who take it get their lives back. Sadly, this is not the reality many RA patients live with.

 As I have mentioned before I found and love the RAWarrior site and then other sources for information have been Webmd, John Hopkins, The Cleveland Clinic etc. Now these are wonderful and informative sites BUT they are not Canadian.  Things work differently here in Canada and it would be nice to have information that is relevant to the Canadian experience. We have different procedures, different access to testing, different medications etc. Has anybody else experienced this? Are you aware of sites (other than the Arthritis Society) that are Canadian?

I look forward to hearing your thoughts and suggestions :)

© 2011 Rhonda

Monday, September 19, 2011

New Rheumatoid Patient Foundation

 I am very pleased to announce the Kelly Young of has launched the Rheumatoid Patient Foundation this morning.

In all the research I have done on Rheumatoid Arthritis I have only come across one resource that I truly love. Kelly Young has RA herself and has decided to share all of her research and personal experience with the rest of the world. Upon discovering that there was not a patient foundation, she developed one! She is a remarkable young woman who is working very hard on our behalf to bring awareness and education to the forefront.

You can follow her on twitter and she has a wonderful community on Facebook  this community is extremely supportive and the individuals are there to support each other and offer their own experiences to help others. If you or someone you know and love has RA then please visit her site and learn all you can about what those with RA are going through and how you can best help. If you have RA please take 5 minutes and fill out the survey on the Rheumatoid Patient Foundation website. Donations are also gratefully received.

Thank you Kelly for being you and all that you do!

© 2011 Rhonda

Friday, September 16, 2011

Does It Get Any Easier?

 This morning started off like every other morning. Just getting out of bed and coming downstairs did me in. The pain and stiffness upon waking on this chilly morning makes it clear that I am going to need extra time to get through morning routines and get kids ready and off to school. The problem is that there is no extra time, I spent that lying in bed waiting for my morning medication to kick in. Gentle stretching to try to loosen up joints was to no avail this morning. My jaw ached like never before but I guess I shouldn't be surprised it too is a joint. It is going to be one of those days that is clear. Ready or not I had to get up.

Slow was the order of the morning. As I was getting the kids breakfast ready I found myself frustrated beyond belief...I couldn't open the cutlery drawer. You have got to be kidding right? It is just a drawer but my hands could not pull it open. I had to ask my daughter if she could please open the drawer for me. She did with ease and my eyes welled up. I headed upstairs to get dressed and found once again that I could not open my dresser drawers either. I could not stop the tears this time. I sat and cried for all of the things that I can no longer do for myself. Thank goodness my kids are old enough to get through their morning routines fairly independently. Requiring only reminders to make sure things are done. I on the other hand am losing independence and it breaks my heart.

I pulled myself together and being my usual stubborn self rather than ask for help yet again, I decided that nobody would notice if I drove my kids to school in my nightshirt and fuzzy pj bottoms. If they did I would die of embarrassment but I was out of time and the kids needed to be driven to school. Luckily nobody noticed me getting in and out of the van so luck was on my side :)

I feel like I am losing so much, so very quickly and before I have time to come to terms with one loss I am faced with another. My hands are badly hit by the RA with 14 nodules on each hand (those developed before treatment), both pinky fingers that lean way over away from the other fingers and my middle fingers are ever so slightly leaning towards my pinkies. I can no longer straighten my fingers. When are these medications going to kick in and slow this damned disease down??

Depending on the day: holding or grasping things are out of the question, cutting my own food or chopping food for dinner prep is done by my husband, typing has to be done in short spurts, I can no longer brush my daughters hair nor my own, I need a new buttonless wardrobe and the most difficult is that I cannot use my cane to help me get around...the list goes on and all of these changes have occurred in the past month. Then there are the issues with my feet, the nodules that make walking difficult, toes that are crooked and bent under and my big toes that now lean across and under the toes next to them. Socks hurt and shoes hurt more...I am going to be forced to commit a cardinal sin...socks with crocs :-) for this cold fall and winter to come...eeks! My achy jaw from this morning stayed with me and has eliminated chewing food...this is just one of those days that make me want to go back to bed and start over again! Perhaps time to dig out my heating blanket (graduated from a heating that was packed away for the summer.

Sorry for the rant but these are the feelings that can take me to dark places and I am trying very hard not to go there each and every time I am faced with a new loss. How do you face these challenges? How do you keep a positive attitude? Any words of wisdom would be greatly appreciated as I try to figure out this new reality of mine.

© 2011 Rhonda

Thursday, September 15, 2011

"Today's Doctors"

I had an interesting conversation with my wonderful family Dr  recently that I thought I would share. He was as frustrated as I was with my serious health issues that had yet to be diagnosed. I should also note that he is past retirement but so far is still going strong! Thank goodness I would be lost without him.

He wondered out loud about "Today's Dr's" and why they bother to go through years and years of medical school if they are only going to strictly rely on tests to make a diagnosis. He is so tired of referring patients to "new" specialists who refuse to diagnose based on visual symptoms and listening to patients. If the tests do not back up their theory then patients go undiagnosed and therefore untreated. How very sad!

He had told me that he can see a patient who visually has arthritis in their hands. He can see the inflammation, he can feel the inflammation upon examination and the patients description of the pain is consistent with arthritic pain. When he runs blood tests they do not back up what he sees and hears. He informed me that it can take 5+ years for arthritis inflammation to show in blood work. He is confident enough in his ability, experience and medical training to make the diagnosis and provide treatment. There is no reason that a patient should suffer for years untreated because the diagnosis cannot be confirmed with tests. This is the exact opposite of the majority of today's doctors.

Why spend thousands of dollars, and years and years of your time to become a Dr and in many cases extra years of schooling and tuition to specialize, if you are not going to use what you learned? To solely rely upon test results. It has amazed me the number of neurologists that I have seen that did not even want to look at the actual MRI scans for themselves. To double check those test results. I have heard so many times of things that were missed on a MRI, CT, X-Ray by the radiologist that delayed diagnosis. Why not take those 5-10 minutes to check for yourself?

All in all I was lucky to find a Rheumatologist who was willing to: listen to my history, perform her own examination and acknowledge me. She believed that even if inflammation is not showing in my blood work, that if I say I have had visible swelling I have had it. How refreshing to be believed!  I am what is considered to have sero-negative RA which means that the blood labs do not back up my diagnosis. With the exception of the Anti-CCP which she explained is a specific RA predictor. My symptoms, apparent damage and nodules along with a family history of Auto-Immune diseases were more than enough for a diagnosis of active, aggressive RA with the high Anti-CCP.

What has your experience been with your doctors?

© 2011 Rhonda

Wednesday, September 14, 2011

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

Tuesday, September 13, 2011

Fibromyalgia 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.


Fibromyalgia is a widely misunderstood disease. A large number of people argue that it is a catch all diagnosis. The medical community has come a long way in the past ten years in understanding Fibromyalgia. All blood tests and x-rays come back normal. Diagnosis is made my ruling out other diseases and reviewing symptoms that have been present for more than 6 months. There are also 18 tender points (seen in the picture below) that Dr's assess, a diagnosis is made if 11 or more of the tender points are positive. The cause is unknown but it is widely accepted by the medical community that there is a problem with the area of the brain that processes pain. It is also common for those who have Fibromyalgia suffer from nerve pain.

Fibromyalgia is a chronic syndrome in which a person experiences body-wide pain, tenderness and stiffness in the joints, muscles, tendons and soft tissues. It causes sleep problems and can be associated with depression and anxiety. While it is not an Auto-Immune disease it is commonly found in individuals who are diagnosed with Auto-Immune diseases. The pain from Fibromyalgia comes in many forms it can be: a dull ache, a burning sensation or shooting pain. In my case it is a combination of all three.

Fibromyalgia also causes what is coined "Fibro Fog" which is a way of describing the constant brain fog that individuals face. It impacts memory, concentration and recall. The other hallmark symptom of Fibromyalgia is chronic fatigue. You wake just as tired in the morning as you were when you went to bed the night before. Other sleep disturbances are often found along with depression.

Other symptoms of fibromyalgia may include:
  • Irritable bowel syndrome (IBS)
  • Memory and concentration problems
  • Numbness and tingling in hands and feet
  • Palpitations
  • Reduced ability to exercise
  • Tension or migraine headaches

    Treatment consists of : medications (muscle relaxants, pain medication, anti-depressants, sleep medications etc) , exercise, stress reduction strategies, Cognitive Behavioural Interventions

    Interestingly enough I have found a large number of individuals who have been diagnosed with Rheumatoid Arthritis have also been diagnosed with Fibromyalgia. In my case the two diagnosis came 3 weeks apart.

    Have you been diagnosed with Fibromyalgia? Is that diagnosis in combination with an Auto-Immune Disease? Have you found anything that helps relieve your symptoms?

    © 2011 

Monday, September 12, 2011

Hashimoto's Thyroiditis 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.

Hashimoto's Thyroiditis

 In my last post I had decided that it would be helpful for me to provide some background information with regards to my illnesses. Hashimoto's Thyroiditis is an autoimmune disease that results in having hypothyroidism. It is common for people with Hashimoto's to develop Hashitoxcosis which is a combination of Hashimoto's Disease and Graves Disease (which is hyperthyroidism which is the polar opposite of hypothyroidism). Hashitoxcosis is a combination of both diseases with symptoms that swing back and fourth between the two polar opposites. Talk about a body in confusion! Luckily the Hashitoxcosis is something that does not last and your symptoms will return to Hypothyroidism and stay consistent.

There are many different ways for Hashimoto's Thyroiditis to be diagnosed. I was under investigation for MS at the time. I had spoken to a friend of mine who suggested that my symptoms sounded a lot like hers and that I should have my thyroid checked. I laughed because I have had my Dr. run thyroid tests yearly since the birth of my daughter in 2002. By this point I had under gone more tests trying to pinpoint the cause of all of my symptoms and I was grasping at straws. I mentioned it to my Dr who decided this time to do an ultrasound of my thyroid. The ultrasound revealed a cyst on my throid at which point my Dr. ordered a thyroid scan and uptake and more specific blood work than just checking my TSH levels. A diagnosis of Hashimoto's quickly followed.

 Hashimoto's disease, also known as chronic lymphocytic thyroiditis which is when, your immune system attacks your thyroid gland. The resulting inflammation often leads to an underactive thyroid gland (hypothyroidism), As with any auto-immune the symptoms vary according to the individual but here is an outline of basic symptoms related to it:

Chronic Fatigue
Increased sensitivity to cold
Brain fog, difficulty concentrating
Pale, dry skin
A puffy face
Hoarse voice
An elevated blood cholesterol level
Unexplained weight gain — occurring infrequently and rarely exceeding 10 to 20 pounds, most of which is fluid
Muscle aches, tenderness and stiffness, especially in your shoulders and hips
Pain and stiffness in your joints and swelling in your knees or the small joints in your hands and feet
Muscle weakness, especially in your lower extremities including heart failure
Excessive or prolonged menstrual bleeding (menorrhagia)
Hair loss, dry and brittle
Numbness, tingling and burning in your extremities and face/head
Carpel Tunnel

I was truly amazed at how complex this whole thing is and just how sever the symptoms can be when it has been left untreated.  You can be symptomatic all the while falling into "normal ranges" in your blood work. Had I known all those years of having him check my TSH levels I would have pushed for a through screening of titers etc.  The more I learn I have realized that most sites you get information from dumb it down to the point where they only discuss a few symptoms and they minimize the impact that it has. This appears to be very common when it comes to Auto-Immune Diseases. I was so confused and yet excited at the same time. I thought that this was the answer to all of my problems and even better I can take synthetic thyroid hormone and everything will go back to normal.

I was so happy to get to the bottom of my health issues. My family Dr. pushed and made it clear that this was not all that was wrong with me. My symptoms were too severe for my numbers. I was unconvinced but agreed to continue seeing specialists until we got to the bottom of things as long as he would agree to treat the Hashimoto's so that we could get those symptoms removed and see if the remaining symptoms left us with a clearer picture of what was wrong. We started treatment immediately, slowing increasing the dose each month. Initially I had more energy than I had had in months but that didn't last long. In fact the only symptom that it took off my plate was my hair falling out. I am glad that he insisted that we needed to keep going until we got to the bottom of things. He was clear my symptoms were very concerning and made referrals to Mount Sinai in Toronto which is a teaching hospital and has a wonderful and amazing Auto-Immune/Rheumatology Clinic.

Due to the Hashimoto's Disease I was more likely to have an additional auto-immune disease. It is rare that an individual with an auto-immune disease has just one. Although one is more than enough for anybody! I had previously had RA and Lupus ruled out by another Rheumatologist in early February. The Dr. that I had seen at the time ordered a small handful of tests looking for inflammation markers. He had explained the one test the Anti-CCP was going to cost me $70-$90. When I went to the lab they did not charge me. I asked if they were sure they were doing the correct test as I was told to expect to pay between $70 and $90 depending on the lab. They told me that there was no longer a fee associated to the test and that the Dr. was incorrect. When I went in for my results I was told they ran the wrong test but that all of my other numbers looked good so there was no need to re-order that test. 5 months later it was the Anti-CCP test that provided the diagnosis of RA along with my newly developed rheumatoid nodules and symptoms. I was also diagnosed with Fibromyalgia which is common with Irritable bowel Syndrome which I have had for 22 years and auto-immune diseases, although it is not an auto-immune disease itself.

Also interesting to note that often people diagnosed with Fibromyalgia and Anxiety Disorders often have Hashimoto's!

I hope this explanation of Hashimoto's Thyroiditis has provided a little insight into one of the auto-immune diseases that I have.

You might notice that a number of the symptoms listed overlap with numerous other auto-immune disorders. For me there is certainly an overlap between the three diseases I have been diagnosed with.

Do you have Hashimoto's Thyroiditis? Other Auto-Immune Diseases? More than one? If you have any questions don't hesitate to ask. Please feel free to leave comments or questions.

© 2011 Rhonda

Thursday, September 8, 2011

A wonderful surprise

I had a wonderful phone call from a friend that I had met on-line via almost 2 years ago. Sparkpeople is a wonderful community that supports living a healthy lifestyle, losing weight and all of the tools and resources to be successful. I had left her my phone number sometime in the past year or so when she was going through a stressful time. We did not connect at that time. Since I have gone missing these past few months from Sparkpeople she went through her inbox and found that message with my phone number! What a wonderful surprise to hear from her. She made it clear that she was here for me anytime I needed to talk, vent or just chat. I can't tell you how much that simple act of friendship means. I have found myself in some pretty dark places and very isolated (my own doing) over the past few months. Once we hung up she took her kindness to another level, she decided to do some research on my diagnosis' and funnily enough she found my blog ;-) What a wonderful, sweet woman. I cannot thank you enough for caring so much that you wanted to know what I am going through.

That act of friendship reminded me that while I have come to understand each of my diagnosis' that readers of my blog might not know what: Hashimoto's Thyroiditis, Fibromyalgia or Rheumatoid Arthritis are. I am working on  3 separate blogs that explain each of these diseases and the impact that each has on my life. There are so many misconceptions and myths with regards to these diseases. It is important to me to raise awareness of each of these diseases. To provide facts and information that: counter the myths, to create a supportive environment for others to share their experiences, challenges, struggles and most importantly their successes.

© 2011 Rhonda