Support and Understanding for Individuals with Auto-Immune Diseases

Support and Understanding are two very important pieces in the life of an individual with a chronic illness. Support and understanding are important to every one to some degree or another but they take on a different role in those will chronic illness. A number of people are blessed to get their support and understanding from loved ones. This may be friends or family and when one is truly blessed they get it from both. There is however a difference between the support and understanding that the average person needs compared to an individual diagnosed with a  chronic illness.

There are diseases that the average person is aware because of fund raising campaigns or personal experience. This would include disease such as Heart and Stroke, Cancers etc. When an individual is diagnosed with one of these diseases there is immediate support and understanding and it comes from many sources far and wide. They are embraced and people want to do whatever it is they can to help. They have both support and understanding almost instantly upon others being made aware of the diagnosis. It is also important to note in individuals who have these types of diseases there is an attitude of fighting against something and when they win that fight they become survivors. In the cause of Auto-Immune diseases there is no winning the fight you will have the disease for life. There is nothing to fight, nothing to overcome and nothing to survive. You have to live with the pain and illness for the remainder of your life. That is a very daunting thought. It is overwhelming to know you will have this forever and that there is no cure. It is a long and lonely road to be on.

Then there are auto-immune diseases that unless you have been been directly exposed to by a family member or very close friend you are not likely to know of them. Even then you may not have a good handle on what it means with regards to day to day functioning. There are no cures for these diseases and most of us try not to let those closest to us know just how much pain and suffering there is. The reason is simple it is because there is nothing that can be done to help beyond what our dr's are doing for us. There are hundreds of auto-immune diseases, where the body basically turns on itself and starts attacking healthy cells rather than cells that are full of disease.

Pick an auto-immune disease and then hit the facebook groups and forums on the internet. In every single one usually many times daily you will see at least one if not many more complaints that nobody understands. That they do not receive the support they so desperately need. Nobody understands what it is like to live with chronic pain day in and day out as a result of these diseases. While I agree that unless you have experienced it first hand you won't truly understand what the cumulative effect on a person is. However, you can research to learn as much as you can. There is no reason that you should not understand to the degree possible without your own diagnosis, what your loved one is going through.

I thought it might be helpful to compile a list of ways you can understand and support your loved ones who suffer from auto-immune diseases. Now this list is being complied from my understanding and the fact that I live with 4 auto-immune diseases (Hashimoto's, Auto-Immune Rheumatoid Disease (formally called RA), Raynauds, Sjorgens and Fibromyalgia which likes to hang out with Auto-Immune Diseases for some unknown reason. I am sure that I will miss some things so please in your comments add to my list. Let's help people who do not have auto-immune diseases to be able to understand and support their loved ones.

Understanding and Support for Individuals With Chronic Illness (Auto-Immune Diseases)
Here are things that you can do:

• To be there for them, to allow them to vent their frustrations, to talk about what they are experiencing is really all they want. They don't want you to fix things and they know you cannot make things better but you can listen. It is a very powerful thing to actually listen to another. They may want to express their frustrations with their health, the pain and how it impacts their day to day lives or they may want to talk about things to distract them from their daily struggles.
• They want your understanding when they have to cancel a date because they are having a difficult/bad day. They want to see you and do what you had planned on just as much as you do. They feel terrible for cancelling but their diseases often leave them no choice. Do not take it personally if they cancel. It has nothing to do with you and everything to do with their disease(s). Reschedule or ask if you can drop by and watch a movie with them or bring dinner if you had plans to go out to eat. Sometimes that might be possible unless their pain is that bad that they have taken meds and gone to bed. I know I won't allow friends to drop around when I am in severe pain. I don't like anybody to see me like that if I have a choice. However, I love those who offer to come see me if I can't make it out, even if I have to pass on that offer as well.
• Research their primary and secondary diagnosis'. Very often with auto-immune diseases there are multiple diagnosis. It is rare for an individual to have just one. Read up so that you have an understanding of what they go through and what they are facing in the future.
• Very often depression is something that most people with chronic illnesses suffer from . For some it comes and goes in long periods, for others it is a constant companion. When depressed and/or in pain individuals often withdraw into themselves. Help them to stay involved and don't allow them to wallow and completely withdraw into themselves. Identify the fact that you are concerned they may be depressed. Ask if there is anything you can do.
• Music can decrease pain and depression - Make them a CD of songs that are special to the both of you. Bring it to them or stick it in the mail.
• Movies - go to a show together, rent or purchase one to watch together. Distraction is important. It would be nice if the individual did not have to think about their disease or pain for a couple of hours.
• Drop off a casserole, lasagna, soup or stew. Something that they can heat and serve on days when they are struggling and would probably not eat if it was something that required effort that they just don't have to give. 
• Gift certificates for maid service on special occasions would be so very appreciated. Many of us cannot deep clean our homes the way we used to.
• Write them a letter or communicate via e-mail or phone - The point is to stay in touch. Friends and family often disappear once we have cancelled a number of dates/get together's. Understand why and stick around. You will both be glad you did.
• Ask if there is anything you can do to help. My mom comes by and cleans my floors almost every time she visits as she knows this is one task I cannot do on my own. It is so appreciated beyond what words can say.
• If you are headed out to the store, see if there is anything you can pick up for them. Trips to the local pharmacy are also greatly appreciated.

What else can you think of to add to this list: Please share in the comments section. If you are an individual with a chronic illness what can your friends and family do to try to understand what you are going through and to support you.

Suggestions for topics you would like to see just add them to your comments. The 30 blogs in 30 days is going to be a challenge :)

© 2011 Rhonda

Chronic Pain

 On January 13th, 2012 I will have been living with Chronic illness resulting in chronic pain for exactly one year. Not one day in that entire year have I been pain free. It is a daunting statistic and if that isn't bad enough I know that there is a very high probability that the remainder of my life will be lived in pain. It is no wonder that Chronic Pain often coincides with chronic depression.

It was 8 months before we discovered the cause of my pain. I believed for all those months that if we just figured out the cause then we could treat it and it would go away. I look back at that time and think how naive I was and then I realize it was not nativity, it was how I got through some of the worst months of my life. Today I have a much better understanding of all of the things I have been diagnosed with and while I am not happy about it, I have accepted that this is the way life is. I cannot change it, I cannot wish it away so the best thing to do is to acknowledge the way it is and figure out a way to live my life so that I am not merely surviving but actually living. I decided when thinking about the new year that I was going to focus on the present in hopes that I could start living again even if it is with restrictions. None of these things do anything to help me deal with the crazy amount of pain that I live with. I cannot: think, wish, dream or bargain my way out of pain or the diagnosis'. The pain is very real and very bad.

Each day I live with a constant ache. Now please don't dismiss my ache try to think of it as more of a tooth ache and then you will have an idea. I have that ache in the joints of my feet, knees, hips, legs, back, shoulders, elbows, wrists, hands, neck and jaw. Then I have an ache in pretty much all of the muscles that surround those joints. So basically I ache from head to toe on both sides of my body because RA is special that way. That pain all on it's own, day in and day out is more than anyone should have to face. Then we can add the pain that comes in the form the feeling of somebody stabbing you with an ice pick in all of those joints...sounds more like a horror movie doesn't it.

Did you know that each foot and ankle contain 26 bones and 33 joints and more than 100 muscles. Now remember all those muscles ache and those joints often feel like they are on fire (in my feet especially), while being stabbed with an ice pick. I have often told my hubby I feel like my body is more like the old arcade pinball machines as the ice pick stabbing seems to jump from joint to joint, just as the pinball bounces around the machine from one area to another. When that is happening there is NOTHING that can be done to relieve the pain. Pain meds are a joke, they do not get rid of the pain they simply take the edge off , if you are lucky . If the pain is under an 8 and you take pain meds it takes the edge off enough so that you can actually function and think of something other than the pain. At the same time, I don't want to think what my pain would be like without my pain medication.

My Rheumatologist talks about pain scales. Pain scales mean nothing to me. Pain is subjective. I have had people complain to me about a certain pain and then apologize because they have no right to complain about such minor pain when I am in constant pain. and my standard response is no, you have every right to your pain. Your pain is what impacts your life and you have a right to your feelings and to express your pain and not have it compared to anyone else. We can all experience the same injuries but feel the pain differently. It also has to do with primary and secondary diagnosis. All of my diseases seem to have descended upon me at the same time. I think it is truly safe to say that my immune system is out of control attacking everything it shouldn't.

As for my Dr. she simply wants to know on a scale of 1-10 where my pain is. Not sure how that is helpful other than they want to hear that number going down when they meet with you. She has never asked me why I assign the number on that scale that I do. Behind the scenes is simply what am I able to do in relation to the pain. A ten on the pain scale is when I am unable to get out of bed, I cannot be distracted from the pain, I am in tears and begging for someone to make it go away, often questioning if I am going to make it or in the throws of it wishing I could die to make it stop. Yes, I have had pain that bad that I wished for my life to be over. Maybe it is the fact that we are dealing with the accumulated effects of the pain day in and day out. I have had more than my share of days where I have been in that much pain. In general I tend to stay around a 7-8 and you can often hear me say that life would be okay if we could get it down for a 5. A five I could consistently manage and then I wonder why anyone should have to live in pain at any number.


My family Dr. says that I should never let the pain get that bad. I take heavy duty pain meds 4x daily and even with those I live most days no less than a 7 and often 10+.  This is to avoid the peaks and valley's with my pain. Trying to keep me on an even keal so that meds can do their job. I would hate to imagine where my pain is without my daily pain medications. I also use: heat, soaking in a hot tub (I have a walk in tub, thank goodness), ice packs, topical creams and rubs, music (believe it or not it is a known to decrease pain and depression!), meditation (I try but if the pain is over 8 it just doesn't work because I cannot focus on anything other than the pain) and anything I can think of. I used to use massage but that the last two times I went made things worse.

I recall seeing a pain scale that was helpful on RAWarrior.com but I was in so much pain when I saw it that I don't recall much about what it said other than I need to go back and find it. When I do I will share the link so that if you haven't already seen it, you can take a look and see if you find it helpful! It was actually a scale that RAWarrior linked to and here it is. I think I should consider printing this scale out and reviewing with my Dr. so that we are on the same pain scale page!

What do you do to manage your pain? Have you come across an effective pain scale? Please share your techniques for dealing with pain, preventing pain or if you have found an effective pain scale.

Looking forward to reading your comments!



© 2011 Rhonda

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