Sunday, March 27, 2016

What Are You Afraid Of?

Today was Easter and one of the first questions the Pastor asked after starting his sermon was, "What are you afraid of?" I have to admit the first thing that came to mind as I was sitting in a room of a few hundred people was germs. I know that sounds crazy but for me and other chronically ill people it is real. I freak every time I go out in the germ filled world. Church is the worst because everyone has to shake hands and how do you avoid an out stretched hand? "Um not thanks I'll pass because I don't know where your hand has been?" It doesn't work like that so I put the hand sanitizer in the top of my purse and use it, most of the time. It's pretty easy to conceal until the whiff of it notifies everyone in smelling distance that there's a germ aphobic somewhere close by. I want to laugh every time I use it because we all know how people are. I'm pretty sure I would think the same thing if I was healthy and didn't have to worry about germs.  It wasn't so easy to use today as I surrounded by people and it might have been pretty rude to use hand sanitizer after I shook hands with the person sitting next to me. I sat there while the germs permiated into my dermis pretty sure my connective tissue was already going into shock. I left church praying that my immune system is strong enough to combat the germy critters invading my space not to mention the ones I inhaled but I won't go there. Hold it my nose is beginning to burn a little bit. Ha

I got over the germ issue, to some degree, and the Paster went deeper on the, "What are you afraid of" subject. He went on to tell a story about when he was a child and how the dark scared him. He ended with the fact that most of what we fear comes from a fear of death. You had to be there to hear the whole sermon but if you go deep enough you can figure it out. I thought about my biggest fear after sorting through the germ invasion and the funny part was I had been thinking about it while we were sitting there waiting for church to start. My fear? Public. People. Groups of people. I never feel I fit in. I'm an outsider because no one can relate to me. I mean what do you talk about with the sick girl? You earn the label and it sticks. I get very nervous when I have to be with people because I hear so much life when mine is very smell. I looked up some volunteering opportunities in my area and maybe one day soon I will feel up to doing that. It probably doesn't help at all that I'm in a flare right now with pain at higher levels than normal especially at night. You know it's bad when you have to pee in the middle of the night but it takes you so long to loosen up and get to the toilet and whoopsies you're two years old again. I have to laugh. It's also humiliating to be a two year old again but hey I have no shame so why not share it with the world. It's one of the ugly sides of chronic illness. The ones nobody talks about. It ain't always pretty being chronically ill. 
Another thing that im afraid of is going to the doctor. When I went to the doctor a few weeks ago and saw a new doc and she looked on the computer at my book diagnosis' and says, "Wow I would have never thought you were dealing with so much from the way you look and act." What am I suppose to say to that?" I just said, "I have to put on the face." Literally, makeup covers a multitude of under eye blackness and pale skin that looks like a corpse. Bright colored cloths always help with the walking dead look. Then I started thinking when I go to the doctor should I not wear makeup, do my hair, or dress decent so they can see what I really look like? I'm pretty sure they would open the door and call a code red in exam room 4. The they would call the nearest coroner to come see if they should pack me on ice.  All joking aside there are days like that. It's seems not only doctors but everyone questions chronic illness. I wish I could figure out why but I probably never will. I'm sure that is the biggest reason I am afraid of seeing people, the doubts of something they can't see, my reality. 

I really can't say my fears have anything to do with my death because I'm ready. My fears are much different and I'm sure they would look much different if I was living a normal life. This IS my reality, my life. I'm always trying to keep one step ahead and just when I get there I'm knocked down fours steps and have to start all over to work at getting back up. This happens over, and over, and over, again. One day I'll reach the top and all the illness fears will disappear. I will win because of an open tomb and I am so very grateful for that! 

"What are you afraid of?"

God Bless!


Monday, March 21, 2016

Are You Listening?

"Most people do not listen with the intent to understand; they listen with the intent to reply." Steven R Covey.

"When you talk, you are only repeating what you already know, but if you listen you may learn something new." Dalai Lama

"The quieter you become the more you can hear." Rumi

"The word listen has the same letters as silent." Alfred Brendel

"One of the most sincere forms of respect is actually listening to what another has to say." Bryant H McGill

"So when you are listening to someone, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it." Jiddu Krishnamurti

"When people talk, listen completely, most people never listen." Ernest Hemingway  

Smart people right there. I must say many of these quotes would have never affected me before because I was so busy trying to keep everyone else happy and trying to solve their problems I didn't have the time or the knowhow to realize the truth of these quotes or the know how to apply them.
Then Chronic illness and Hospice happened. After both events my eyes opened to the truth and I began to notice more and more the reality of the fact that people don't listen to what others say. I began to observe people and see how most people want to fix the problem, like me, or the truth that many people turn the issue around and make it about them. I also began to really think deeply about the issue of listening and realized the fact that when someone is not heard they turn off and keep things to themselves. No one wants to talk to a fixer, speaking from experience. I can spot a fixer in a second hence the reason I keep so much to myself.

I saw this truth many times in my life but one very specific time was when I was visiting a Hospice patient who had only days left to live. It was a man who wasn't very old and if he hadn't been struck with whatever illness he was hit with he may have lived another twenty years or longer. I just got done feeding him and we were sitting talking, actually he was talking and I was listening, and a friend of his walked in for a visit. The sad part for me was that after visiting the patient for a few weeks he finally trusted me enough and began to open up. In the weeks before he was very closed mouth and said, "Hi" when I came in, would eat, and say, "Goodbye" when I left and that was it. I respected that, after all he was in charge, at least the way I saw it. I knew this visit was different from the minute I walked in the room. It was almost like he knew his time was getting close because was talking much more. He had been opening up to me when this man walked in. It seemed like he was a friend but maybe not a real close friend. In the minutes before he entered the room the Hospice patient had tears in his eyes as he was talking to me and I remember looking at this man whom weeks before put on his "man" face. You know the one, I'm a man therefore I hide how I really feel, but this visit he was raw. I was so glad he finally had the chance to let it all out and trusted me enough with his pain. In walked said friend and when he walked in I could tell the patient was not happy. I could read his face as he rolled his eyes and let out a little sigh. His body language told me me the visit wasn't welcoming at all. It didn't take long for me to figure out why. In order to get this you have to put yourself in the room we were in. The patient was opening up and visibly upset about his reality, his death. The friend walks in all jolly and he begins by telling a stupid joke that wasn't even funny. He was loud and living life while the hospice patient was dying. Just what the patient didn't need, a big mouth who got to leave him and live. It was the wrong place wrong time kind of feeling. The air was so thick you could have cut it with a knife. The hospice patient looked at me with the tears in his eyes that said ""Dont leave." The visitor rambled on and on and my heart was breaking.  We were both hoping the friend would leave but when he didn't I had to leave to go see other patients. I walked by his room a few times after that to see if Mr Fun had left but he hadn't, he was still talking and not listening.  Unfortunately I never saw this patient after that visit. He died by the next week when I returned. I always hoped and still do that he had another volunteer or social worker or someone whom he trusted enough to open up. He had so much to talk about before his death.  It seemed his friend sure didn't have the skills to just sit and listen. So very sad. A lost opportunity not only for the patient but for me and even for said friend. Once a moment to listen is gone, it's gone. The trust is broken. I remember this patient often and I remember what he taught me. I also remember the feelings and the lesson I learned from the friend which is I never want to be that kind of friend even to a stranger.

It's not easy being a good listener. There's an art to listening and being fully present for someone who in need. You cannot make it about you. Human nature has a funny way of screwing that one up. 
Once you start listening, really listening, and try not to think about what you are going to say next. It gets easier the more you do it. Be in the moment and stay there not only physically but mentally. Care for someone in a true way by just listening. Embrace silent pauses they are okay. When someone is opening up to you they need that silence to process either what they just said or to process what they want to say next. Don't put words in their mouth. I've learned when I say something outloud I learn so much more from it then if I keep it to myself. Writing this blog is the best thing that ever happened to me because it helps me to process so much. Writing things down has the same affect for me as sharing what I'm going through with someone else. Sadly people don't have the skills to really listen and understand anyways so the blog serves that purpose for me. I write and no one tries to change the subject, make it about them, or shut me down with trying to fix what can't be fixed. 

The next time you are in conversation with someone remember nothing says I care about you more  than a listening ear. Don't try to fix the other persons problem just listen. The way you might deal with the same problem is not how someone else would deal with the same problem. Respect that. 

God Bless!


Friday, March 11, 2016

Drawing Inspiration From Others

Life can be hard at times for all of us. Struggles come and go for everyone on this path called life. There is no escaping stress, conflict, or troubled times. It's all a part of this game called of life. The important thing is once we go through something and it ends hopefully we learn a lesson from the struggle. My question is, what if the struggle never ends and seems relentless? For me the struggle is the constant issue of being ill with one thing after another. For others it might be the loss of a loved one or some other struggle that never gets easier. How do you move on when it seems like the struggle will never end? I wish I had a clear cut answer. Oh, believe me I have beat this to death in my mind over and over but still come up somewhat empty handed, except for one thing, the inspiration I draw from others. There are not many people I can say inspire me. Don't get me wrong I appreciate others struggles but with my situation being different than another's it's hard for me to really believe anyone could ever understand because they can't. What the real world deals with is so different than what I deal with. I'm not being mean or judgemental only truthful. I wonder what it would be like to unload all the baggage I struggle with to someone. I doubt anyone could handle the crazy that goes on in my head about all this chronic illness especially since there are so many days I don't understand it myself.

Last week I went to visit family in California and I was finally able to meet one of my cousins daughters Trisha. She has struggled for many years with chronic illness that holds her back big time. Finally meeting her in person confirms the inspiration I draw from her. My suffering is nothing in comparison to hers. Our family met for dinner at her house one night and she was not having a good week at all but she still spent the evening with us. Smiling and conversing the best she could considering. I know times like that are not easy for her. Looking back I wonder how she does it. Her faith is what gets her through, her words not mine. I feel blessed to be related to her. We had a chance to talk about a book she is writing about her health struggles. I am so excited for her because I know she will inspire many people by her story. She will give hope to others without even realizing it. Rock on Trisha!
feel blessed to be related to my new found family in California as each one of them deals with medical issues of their own that are not easy. I wonder why our family has been plagued with such issues. Watching all of them push themselves during our visit when I know it wasn't easy for any of them. Putting on the face as I like to call it. I believe spending time together with people who suffer gives everyone inspiration. It's like you look at each other and think to yourself,'if she can do it I can do it.' I was fortunate for this trip as I was on steroids for my breathing issues which gave me a huge boost to be able to keep up. I am so thankful how that worked out. Funny how God knows what we need when we need it. The important thing is I went! I did something I never thought possible and spent time with some special people, for that I am grateful.

My thought on ending this is when you are down, ill or not, look around you and observe. Don't tell yourself someone else has it worse than you but look at that someone and draw inspiration from them. If you can't, then be that inspiration to someone else. We all have a story so use yours. Don't be ashamed of what you are going through. Share what you are going through because you never know who your story might help. Things don't only happen to us for us to learn from but for others to learn from us too. Be that inspiration and in the meantime never give up!

God Bless!


Friday, March 4, 2016

March is Autoimmune Disease Awareness Month

It's autoimmune disease awareness month, all thirty one days, so I thought I would try to not only educate you but challenge myself by writing thirty one autoimmune disease facts about what it is like living with autoimmune disease.  By facts I mean my reality which of course might sound a little cray cray and off the wall but none the less they are from my view so maybe facts isn't such a good word. Reality? Yes, my reality. What I live with. The things I have researched, agree with, and live on a daily basis. So here it goes.

1. Autoimmune disease affects your sleep no doubt as I am sitting here at 3:22 AM writing this. I laid in bed for almost an hour trying to get back to sleep when finally I had enough. It took me many years to convince myself it's fine to get up instead of laying there either in pain or mental anguish fighting with both sides of my brain as to why I couldn't fall back asleep while trying to convience myself I'm not in pain. It's a physical battle 24/7 and just because it's time for bed my body doesn't magically turn off the pain for 8 hours so I can sleep. It's quite the opposite because, for me at least, pain is worse at night than during the day when I can move around and keep my joint loosened up.

2. Acceptance. With autoimmune disease you beat yourself up constantly as you fight against it all the time. All the thoughts that run through my head on a daily basis. This isn't happening. Everyone my age has pain. You are blowing this out of proportion. Get over it. Years and years of arguing with yourself and fighting to be normal. It takes many years but once you finally get to a place of that odd sort of acceptance it becomes easier even though it never goes away.  When you get to the place where you realize you don't have to prove your illness to anyone that's what I call acceptance. I use to feel bad or guilty about my illness but not anymore. If people don't want to understand bye bye I don't need them in my life. Acceptance is freeing.

3. Feeding off #2 is the sad fact that people do question your illness when they can't see it. Autoimmune disease is very a misunderstood disease because it is invisible and hard to see especially since most of us are masters at the cover up game. All the years people, family and friends included, would see me and after question that I could really be sick. With autoimmune diseases the damage is happening on the inside in many cases so it's not like seeing a broken arm or a person on chemo with no hair, many times there are no outward signs as to how much a person is suffering. Being human for some reason we always need the proof is in the pudding to believe something is true. Sadly that mindset doesn't apply for autoimmune diseases. Have compassion.
4. Autoimmune disease is lonely. Lonely but not in the sense of poor me I'm all alone blah blah blah but in a sense of the loneliness in being alone in your disease. I don't care how much someone loves you or listens to you or tries to understand there is alway that odd loneliness. Don't get me wrong I keep busy with hobbies and have a active in home life and imagination to go with it but being alone in my disease can exhausting at times. Coming to grips with the loneliness gets better as the acceptance in #2 becomes stronger. 

5. Watching the world live can be challenging. I feel like l live my life in black and white and I notice it much more when I am in large groups of people my own age. I feel like I'm sitting in the black and white while I see all this vibrant color surrounding me. People laughing and sharing their busy lives while I'm over here thinking to myself, "Wow I haven't left the house in four days." There times in those situations I want to run out the door and go home to my comfort zone. You can see the struggle in this if you look close enough. It doesn't end there because many times it brings me down for a few days wondering what my life would look like if autoimmune disease hadn't enter my would and dimmed the colors.

6. Everyone has a cure for your autoimmune disease. Don't get me wrong I think it's great when people get cured or say they do. It baffles me to in some degree since there is no cure for autoimmune diseases but what works for one doesn't work for another. This must be respected by the people with and by the people without autoimmune diseases. Our immune systems are wacked. Yes you can take many measures to strengthen the system but the problem is still there. I take medications that are powerful and what people don't understand is mixing those drugs with the "new cure" can kill me. I trust my team of doctors and the research. It's my choice and only I can make my decision on treatments, not my family, not my friends, not my doctors, but me. I know my symptoms are better controlled on meds and maybe yours aren't but we all must make our own choices and live with them.

7. You lose friends with autoimmune disease. Let's get real autoimmune isn't like a broken arm or surgery. It's isn't like cancer. Autoimmune disease is forever, at least until there becomes a cure. People forget you. It's all good I'm not complaining in the least and I understand it. Who has the time or the patience for a person who use to be there for them but now isn't? People don't know what to do. They can't fix you so they bolt. I can't say I wouldn't be the same way if I was the healthy one and had a friend who has been sick for years. I sure hope not but who knows. Ain't nobody got time for that. It's funny because I have really learned to like myself in all my solitude. I've actually become my own best friend and that's a huge plus in all of this struggle.

8. Taking charge of your medical care is crucial when you have autoimmune disease. You are the boss not your doctor. You have to do the best you can to keep up on the routine blood work, appointments, medications refills and new scripts. Only you. There is no medical fairy that comes along to push you, it's up to you so you must stay on top of it all. Try to keep the best records you can. This isn't always easy. I never use to do this and then when I developed asthma and my pulmonologist asked if I ever had a chest ct scan done I said no only to find out I had. When you have test after test you forget. Do your best to try and keep dates and tests written down. I still need to work on this.

9. Diet and exercise are important. My grade for this is a D-. I could do so much better than I do. It's a vicious battle because when you are exhausted it takes so much energy to plan and take charge. I feel for myself the longer this goes on the less I care. Bad attitude = Bad habits. I know this will become easier for me as the weather gets better here in Michigan. Fresher produce and being able to walk outside helps a lot. Sunshine helps too as Michigan winters can be dark and gloomy.

10. Medication mix up. Whoops. I try to keep a system to my medications. I have a few I take when I get up because one needs an empty stomach. Then later the next handful. There are days it might be mid morning and I ask myself did I take the second mitt ful? I finally came up with a system where I take all the bottles out when I take my first dose and when I take the drug I put the bottle back in the basket. This way I know if any bottles are sitting in the counter mid morning and not in the basket I didn't take them. Problem solved. Seems so silly as I write this but for me it works. There are times the disease causes your thinking to become jumbled and getting confused becomes easy. It feels like a full time job keeping it all straight and in order at times.

11. Psychological warfare. This is my term with my own definition. It seems when you are chronically ill there is always a war going on in your head. The war of this isn't fair. How come murders and child molesters get to do awful things to others and have their health? How come those pieces of crap didn't get this? I miss volunteering and helping people so much. That was one of the hardest things in the world for me to give up but it had to be doneBecause of my health. The warfare in my head is something I have learned to mange through my art. When I feel I'm not doing anything for anyone I paint someone a picture. It has become my therapy in this psychological warfare and it works. I wish I could volunteer and keep the hope that one day I will get back to it. That being said I still wish one of those child molesters had this and not me. I'm selfish like that I guess. 

12. I'm lucky. I'm blessed. I still cannot believe the man I was blessed with. I cannot imagine what this would be like if I didn't have his 100% support. I know many sufferers do not have that and my heart bleeds for them. I'm at a loss for words when it comes to this subject maybe because I wonder how he does it. I don't know how he puts up with me always having something wrong. I do my best not to complain but he is my rock when it comes to understanding. There are times my disease makes me mad and who's the easiest person to take that out on? The one you love and live with. This has gotten easier because now I tell him when I'm a crab and make sure he knows it isn't him. It can't be easy for him or any family members to watch a loved one suffer. Illness has that ripple effect.

13. Autoimmune disease is expensive even with insurance. Between doctors appointments, copay's,  tests, blood work, prescriptions, and so many over the counter remedies you cannot imagine the money spent on trying to bring yourself enough relief just to live. When you are suffering you will try anything to take away the pain. Even after all this time I still struggle with this because it seems there is always some new symptom popping up out of the blue. 

14. I worry constantly about the what ifs of chronic illness. What if we lose our insurance? What if I get hurt and need someone to take care of me?  What if Rich can't work? What if? What if? What if? There are many times I have to pull back and put the breaks on the what ifs or I'll drive myself insane. One day at a time, one minute at a time. We will worry about the what ifs when they come. This is a constant battle.

15. I like to share my struggles in my blog. Coming here and writing is better than going to a therapist with glassed over eyes looking at me with that she looks fine look.  I've never done therapy and I hope I never need to. I've never felt I needed it since I have my own therapist right inside my head who understand me best. I've learned self talk is the best therapist. Usually it's goes something like this, "Pull your head out of your ass and get it together," works for me most of the time. 

16. There are days I don't get much done and that's ok. I've learned over the years it stays right where it was the day before so no worries on things growing legs and walkin away. Who cares if the laundry didn't get done today? I do cook everyday no matter what. You learn what you can and can't do with autoimmune disease and you must work on being ok with it.

17. If I had to pick the worst symptom of my autoimmune disease it is hands down the chronic fatigue. Unexplainable fatigue that causes me to be weak and many times forces me to stop what I'm doing smack dab in the middle and lay down. It isn't a I need a nap kind of plop just a rest my body plop. The best way I can describe it is if you ever has surgery and you remember how you felt for the next month or so every time you did too much. You have the agenda in your head of all you are going to do but then you start doing things and wham it hits. That's what autoimmune disease feels like except unlike surgery you never fully recover. Fatigue is a constant unexplainable battle. I hate it the most. I can deal with the pain easily, most of the time, but the fatigue is a sad symptom to me because it affects every aspect of my life. It wears you down not only physically but mentally. This is the main reason getting a job is out of the question, another sad loss for me wondering if I will ever be able to work again. The picture I had in head when the kids left home was so much different than the reality I am now living. 

18. You learn to adjust your schedule according to your illness. You might make plans on a good day for next week Tuesday but next Tuesday comes and the flare that hit Monday makes you realize that Tuesday probably isn't going to happen. You become very undependable. Making plans becomes another mind game because when you make them you never know. I have finally become secure enough in my disease that when and if I make plans I always tell the person I'm planning on it but be prepared I might not be able to come. Hence the reason I don't make lots of plans. Cancelled plans happen now and I've learned to be ok when it happens. I am going on a trip soon and it scares me to death. Leaving the comfort of my own home, my illness security blanket, is very frightening. But  I also think to myself I still need to try to live. Life at times feels like it is slipping away out from under my feet and if I don't take a few chances what is the point? Life is meant to enjoy so why not try to do the best I can even with autoimmune disease always on the back burner.

19. My one wish is that people could be a little more sensitive towards those with chronic illness. I write a lot in my blog but I don't open up easily to people. Why? Because most people just want to fix it. When I hear people tell me, "It could always be worse," I want to bash them in the face. Yes it could be worse but this IS my worse. It's what I live with. It's not easy. When people say stupid things like that it makes me withdraw more. Once again because of the autoimmune disease misunderstanding that is so rampant.

20. There are over 100 different autoimmune disease, no wonder the average diagnosis can take over 4 years or more. Not to mention the many doctors a person will see over that 4+ year period trying to get an answer as to why they feel sick all the time and experience all these strange symptoms that come and go. Many times symptoms are subtle with no abnormal blood tests early in the disease but the person knows something isn't right. I always say a person knows when something is wrong no matter what a doctor might tell you. You must keep up the fight which might mean many different doctors until you find the one who listens and wants to help you. A diagnosis is a relief with a whole new set of questions that follow. It is just a start. There are blood tests that are done and other tests that may be performed but many times autoimmune disease is a process of elimination diagnosis. The doctor will take all your symptoms, the physical exam, tests, and blood work and try to fit all the pieces of the puzzle in place in order to pinpoint the diagnosis. It's sounds easier said than done especially since the symptoms of different autoimmune diseases mimic each other. 

21. If you are diangnosed with one autoimmune disease it sets you up to the possibility of getting another one in the future. Mine started at age 19 with hashimotos which is autoimmune thyroid. Nodules form on the thyroid and thyroid level become low. I still have 3 nodules we watch. I believe my journey began with that diagnosis but was amped up after the birth of my third child when it all began to spiral out of control. Now I watch both my daughters struggle with the hashimotos. Genetics plays a role in autoimmune disease also. The chance of developing autoimmune disease is greater if a close relative is diagnosed. I can hardly go there in my head when I think about the symptoms my daughter experience and see them struggle as I did in the beginning. I would add 5 more autoimmune diseases to my list it fit meant they didn't have to suffer. Too bad It doesn't work like that.

22. NIH estimates 23.5 million people suffer with autoimmune disease. In comparison cancer affects 9 million and heart disease affects 22 million. The saddest part for me and other sufferers is the research funds for autoimmune disease is a drop in the bucket compared to that of cancer and heart disease. I wonder why with numbers like that? You can see the misunderstanding and how autoimmune sort of gets swept under the rug so to speak when compared to other disease. I wonder why when so many suffer? I do believe it is because autoimmune disease is a mystery of sorts and the research maybe be so much more complex? I don't know but I wish it would change.

23. Laughter is the best medicine. I need to laugh like I need air. When I see my immediate family laughter is always present. I love spending time with Rich and the kids and grandkids. Who doesn't love that? I think being chronically ill helps you appreciate it a little bit more if that makes any sense. Surrounding yourself with love and really good energy is a must when you are chronically ill. 

24. Self worth is a constant battle when you have autoimmune disease especially for those of us who are unable to work or participate in the real world. We all try to find meaning to our lives especially the older we get but when you are ill, a lot, it's hard to figure out what that looks like. Right now I have to believe my meaning is to share my struggles and help others realize they are not alone. Truthfully that's all I have to give at this point. We are all in this together.

25. Hope. Being chronically ill you must never give up hope because on many days hope is all you have. The hope of a brighter day. The hope of a cure. The hope of a peace. Never give up hope no matter what! 

26. Entertaining is exhausting for the chronically ill. We have basically cut way back on having people over because even a simple dinner can put us down for days. I might do ok during the actual get together but people have no idea how a chronically ill person unravels after the party is over. With chronic illness there is always a pay off to everything and I mean everything you do. After every large get together I say that's the last one. A few months go by and I forget the price I paid only to do the same thing over again. It's like you never learn and in some odd sort of way you always have that hope that maybe this time the payoff won't be as bad as the last. Plus you can't stop living and family is important so you just do it.

27. One of the best parts of my day is when I get to soak my bones in a screaming hot bath. I must admit it is like heaven on earth for me. The heat from the water helps relieve pain and relax my mind in so many ways. I often think of bath time as one of my rituals. It's soothing and refreshing both at the same time. There are days I need to take a couple hot baths to make it through the day. It is almost like medicine to me. It's hard to put into words what a simple bath can do for a chronically ill body and mind.

28. Staying positive when living with autoimmune disease is critical. It is also easier said than done at times. Talking to yourself with good thoughts instead of bad thoughts keeps you going especially on those bad days. Think about how much your thoughts control your life on a daily basis in a normal life now imagine it when you fell sick all the time. You probably can't even imagine it. The more you hear the negative the more you believe it. On the flip side the more you hear the positive the more you believe it. You must choose which side you're on. Choose wisely.

29. With autoimmune disease stress can be a trigger as well as weather, overdoing it, not taking care of yourself, not eating properly, but many times there is no rhyme or reason as to why you all the sudden are in a flare. A flare is when your disease decides it needs to be more active than it usually is. The physical and mental are both very hard to deal with as you try to figure out what might have set you off and try to reverse the cause. Sadly when you are in a flare, time is all you need. You need to rest and take care of yourself while you wait for it to pass. Easier said than done.

30. When you live with autoimmune disease you learn to appreciate the smallest of things. Being able to go out to dinner is a blessing even though you usually need to go home right after because dinner is enough. Every little accomplishment becomes a big accomplishment to you. What is a nuisance or inconvience to most to you is progress and life.

31. One of the worst parts of living with chronic illness is the fear. It isn't a fear in the way most of us think of fear but a different sort of fear. The fear of the unknown. The fear of what's next and what might come tomorrow. The fear of getting a cold that leads you into a tailspin and usually antibiotics. The fear of treatments wondering if they are worth the risk. The fears are too many to list. You learn over the years how to control the fears by thinking happy thoughts and blocking out the junk that doesn't belong there. The fear never really goes away. 

That is my 31 general facts or thoughts that I have when it comes to living with autoimmune disease. I'm sure if you took ten people and asked them all to write down 31 facts or thoughts on living with autoimmune disease their 31 might compare or may be different. Living with one of these diseases is all your own. As with everything in life we all experience what we are going through differently. We must learn to celebrate those differences and build one another up in our struggles. If we aren't doing so than what is the point of living, with or without autoimmune disease? Rock on my fellow chronic and never give up on yourself. I know I won't!

God Bless!