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!

I 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!

Dianne

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!

Dianne

Drive Thru Diagnosis

Once again I have a brilliant idea. What can I say? I am a mom so that pretty much puts me in the category all by itself. I mean really, if you've raised kids you can pretty much figure anything out because you are always a step ahead of everyone and everything. That kind of skill doesn't just disappear because your children grow up and move out. A mothers brain is always one step ahead of everything that is going on around her. Many times I feel like I am one step ahead of even my doctors when it comes to my health issues. By the time I finally go to the doctor for any health issue I am having I already figure out the differential diagnosis and pretty much narrowed it down to the actual diagnosis. The past two and a half weeks was no different. I ended up back in the docs office again last Thursday with worsening bronchitis and now a sinus infection. I pretty much knew I had a sinus infection for some time now and I am sure I am the kind of patient a doctor becomes very frustrated with. The first time I went in for the bronchitis I conviently left out the sinus problem at the risk of sounding like the hypochondriac that I'm not. It's funny when you are sick all the time because you learn to taylor all your issues and minimize them to deter the risk of sounding like an absolute nut job. I had to laugh last week when I saw a new doc in my primary's office when she looked at my diagnosis list and said, "By looking at you I never would have guessed you were dealing with all of this." My response as usual was, "I know I am great at covering it up." Of course that gave m some odd sort of satisfaction at that moment and I patted myself on the back for being such a master of disguise. On the other hand the more I thought about it the more sad it made me. The sadness of losing who I use to be and now feeling like a shell of a person living life on the sidelines. Sigh. Oh well life goes on. I'm happy I am feeling better than I was a few weeks ago but I am hoping and praying it keeps getting better as I am going to California next week to visit family. I can't imagine going on a trip and not being able to breath and feeling so weak. This week I will continue to will myself back into my normal state of health which really isn't normal at all. More sighs. 

I woke up this morning using that will to will myself out of bed. Believe me there are days it's hard to crawl out of that bed. The past few weeks have been so much harder than normal plus with the high dose of steroid therapy I'm tossing and turning all night long so morning comes and I'm still exhausted. As I laid there today I inhaled my albuterol because my wheezing and cough are much worse in the morning. I use the inhaler and wait for the relief and then pull the covers back and get myself in gear. Laying there waiting I was thinking about my toes and the horrendous pain I have been dealing with for so many months. The pain, burning fire, and other symptoms are getting out of control and I know I am going to hit that breaking point where I'm going to have to call my doctor for this issue but hey why call when you can put it off for months and suffer in shear agony? The life of a chronically ill person, why deal with something today when you can wait six more months? All of the mind games going back and forth about when to call about an issue is almost as exhausting as the physical symptoms that rear in your ugly head. This got me thinking about McDonalds. No not about burgers and fries but what about a drive thru diagnosis? Jump in your car drive to the drive thru look at the board and place your order, "Hello doc today I'm still dealing with my wheezing and coughing but I need to add a side of burning feet and pain." The person at the other end of the speaker tells me the total of my purchase and tells me to drive to the next window. Pull up to the window give her my insurance card, kerching, heres your receipt please pull up to the next window for your diagnosis. Next window doctor is there orders tests, gives you your scripts, and tell you they will contact you with the actual diagnosis. I love this concept especially since I try to avoid germs as much as possible, yes being chronically ill germs are always on your mind because with a compromised immune system you have to be extremely careful. I might be onto something here. Humm. Who knows what the future holds with medical care. I know you can now have a virtual doctors appointment if needed and that sort of blows my mind but it also intrigues me to some degree. In all honesty I don't know what the answer is to all this chronic illness garbage but I do know it isn't very much fun at all. My head wants to make it all easier but trythfully I'd really like to make it all go away. For now I'll dream about stupid sceneries that in some odd way help me to try to make sense of all this insanity that the rest of the world could possibly never understand. Fight on my fellow chronics! 

God Bless!

Dianne

Your Cold vs My Cold

Cold and flu season is upon us here in Michigan. The time of the year we all dread but know is coming. Last week I started coming down with some burning in my chest that didn't have any other symptoms but for me it was a warning. The red flashing warning lights began blinking in my head. My first thought was oh no here we go. I wasn't wrong. It's funny how you get to know your body so well when you are chronically ill and automatically know what your symptoms will eventually turn into. I knew bronchitis was on its way to torture me. I thought I dodged the whole chest cold issue this year because I actually did get a regular cold a few months ago that was a head cold. I was thankful for that even though the sinus' are still an issue with the after effects of that virus. I kept thinking I won't get sick anymore this cold and flu season because I paid my dues with that head cold. Guess I was wrong as usual. I finally gave in yesterday and sent my doctor a message. With my symptoms and my history she wanted me to be seen. Oh I fought it belive me. I went back and forth with Rich and my daughter allowing them to convience me to go. When you are sick a lot you learn to wait because tomorrow "it will be better." In the back of my head and with my crappy immune system I knew this wasn't going to get better on its own so I went. The whole drive was like pulling teeth. I questioned should I go after all most colds are virus' so no medications are going to make them go away. I mean a cold for the normal world is a cold like the one I has last time. It's almost a joke how excited I was with the last time because it didn't turn into an infection. I remember thinking to myself,"See you can be normal." I must have gotten a little too smart for myself so this time I'm paying the price? With the asthma my breathing was not good at all. My wheezing was so loud and with the rattleling I could actually feel it deep in my chest. Plus this whole week I hardly moved off the couch. A huge no no for me. I try to keep moving the best I can so when I am down it makes me feel crazy and truthfully worthless. It's a chronic illness thing. The doctor listened to my lungs and said the bronchitis was in both lungs. Treatment du-jour z-pack with a side of steroids. Diagnosis down, script in hands, I headed to Walgreens. Before I left the parking lot I did my inhaler because the cough and breathing needed a little boost at the moment. I left the parking lot and you think it would have ended there but not for me. When the doc said steroids it freaked me out. I've been on them before and it wasn't always a good experience. He told me it was up to me but they would help me breathe better. I filled the script but the whole drive home all I could think was there is no way I'm taking them. Then last night came and the cough was only getting worse. I decided if I was still as bad as I was at that moment I would break down and start them in the morning. Well guess what? This morning I took the first one and I am so glad I did. My airways opened and felt better. I'm sure the antibiotics are beginning to kick in also because tonight my wheezing is better than it was. I know I have a ways to go but it's the beginning to the end of this installment of living with chronic illness. I also learned another lesson. I protect myself from germs as much as I can this time of year. I avoid large groups, wash my hands, use hand sanitizer, and do the best I can health wise as I struggle everyday, but I realize I still get sick. Right now the world is a cesspool of germs and illness for all of us. The best advice we can all learn from is to try not to pass our germs out in the world when we are sick. I know that's not always easy when you have a family depending on your paycheck but if you have to be out there at least try to keep your germs to yourself. That there my friend is why I'm not going out of the house until I am back to my "normal." Take care out there my friends!

God Bless!

Dianne

Give Me A Box

Want, want, want. Watch television and the message is clear, if you buy this you will have the best life ever. There are so many times I watch commercials or tv shows and sort of laugh out loud or snicker under my breath. The older I get I realize it even more that things don't make life worth living. These days when I think of the things I want my list isn't very long at all. Simple things that make life more comfortable come to mind. Truthfully I just don't care about stuff anymore. Yesterday I had a rough day due to lack of sleep which was caused by pain. It seems when the temp falls below thirty here my pain get much worse. The day after the nights with no sleep are both physically and emotionally exhausting. I get down in the dumps and negative on those days. It's a struggle. The isolation becomes real on days like, that. Illness isolation that no one could possibly understand as I only ponder on what my life would be like if I only felt better. The worst part is realizing that it may never happen.

I thought about wants and what I want and I decided I want a big empty box. An empty box? You might wonder why in the world someone would want an empty box. You know how it is when you clean out your closet or home and put all your unused cloths or stuff you don't use in a box and take it to a donation center? I'm sure you do because we have all done it. The freeing feeling after you drop off all that crap. Feels good doesn't it? I loved that feeling when we moved and gave away stuff that was unused. The satisfaction I got knowing someone else would use it brought me such joy. It brought me back to that reality of the stuff we buy that we think we need but really don't. I remember wondering how we collected so much stuff.

Back to my empty box. I thought about how nice it would be to take the layers of illness off and throw them into that empty box. The first thing I would throw in there faster than a basketball in a slam dunk is my fatigue. The unexplainable exhaustion no one could ever understand that comes from being ill. The next thing going in that box would be the pain, swish! Bye bye pain. I know at my age pain is enevitable. It's a part of life but my pain is not your usual I'm fifty three pain. There are many other symptoms I won't bore you with that I would run down the hall with and shoot into that box. Then there is all the head games I play with myself about being ill that would get thrown in for good measure. One thing I know for sure once I had all my crap in there I'd glue and tape that box so tight no air would be able to get in and none of my crap would seep out and come back. Then I'm heading out to the fire pit and burning that bitch. Ah to dream...if it was all that easy. It's not. It's a constant struggle even on better days because on those days even as you try not to in the back of your mind you wonder how tonight, tomorrow, or the next day will be. It's impossible to shut it off no matter how hard you fight it.  Per my usual you know I'm going to stop the complaining and bring on the positive spin. As hard as it is on certain days I still live. I press on and continue to tell myself tomorrow will be better and usually it is. Keep your head up my fellow sickos. If I can do it you can too. If not open that empty box and start throwing your junk in it, hopefully it will make you feel a little better or make you chuckle a little bit. Hang onto the hope my friend!

God Bless!

Dianne

What I Can't Do

The past couple of months have been a struggle as I added another unwanted diagnosis to my list. I've  been laying low trying to figure it all out and sort out what is going on while trying to keep going. It hasn't been easy mentally or physically. Being a creature of habit my head always goes to the future and what lays ahead. You know how it is when you want to control everything and when you can't it has a tendency to make you anxious. At least until you get to the point where you give up the power and realize it isn't in your hands. I always think to myself God has an odd sense of humor in my chronic illness journey. I know he isn't cursing me because of His love for me but my human nature makes me wonder. I picture him up there giggling at me every time I have a new issue to deal. I wonder if under his giggling breath he is saying, "Let's see what she does with this." Snicker, snicker, snicker. Don't worry I know God doesn't work like that but getting to a place of acceptance in another diagnosis requires some mind games. I'm pretty sure the answers lay ahead and are out there somewhere for me to discover.

Yesterday I met a new doctor for my breathing issues and needless to say I was a nervous wreck. My blood pressure was up which was no surprise. I always freak in the days before meeting a new doctor. I was relieved when he came in and was a nice man. He brought up that my bp was a little high and I told him it was because I had to meet a new doc. He smirked but also made me feel better by telling me he couldn't tell I was nervous. I'm so use to my past experiences with the doctors making smart unexceptable remarks to me that I guess I somehow expect it now from every doctor. This is so sad to me when I think about it. I like how he told me he was taking over my care and would be treating me for my breathing issues from now on. Class act doctor! I am so relieved to have a few of these now. 

Last night I felt like a new person. The appointment was over and my anxiety was better. I slept much better without having that appointment weighing heavy on my heart. I'm sure that sounds ridiculous but for me it is too real. Today I have been thinking about how I do that to myself so often, making mountains out of mole hills. I'm a master. My negative thinking the past few months had me focusing on all the things I can't do. A new diagnosis can do that to you. I had a toxic attitude and as we all know that always makes everything worse. It's like that good guy on one shoulder and the bad guy on the other each talking in my ears. The more negative thoughts I allowed to enter in my ear the more i begin to believe them. I have been focusing too much on the things I can't do instead of focusing on the things I can. I'm not even going to list all the things I can't do and start to focus on the things I can. This morning I started listing the things I can do I began to realize I am able to do more than I give myself credit for. Ya, I can't do some of the things I use to but I can still do a lot. It might look a little different now but I can still do them. When I focus on what I can and can't do for some reason I always make it physical. This morning I started to realize it is so much more than physical. My list grew. I thought about how I day dream. I am always daydreaming about the next time I get to see the kids grandkids. I dream of the day new grand babies are born. I dream about Richie and Leah moving closer so we can see them more. Daydreaming is so good for me. It lifts me up on so many days. I laugh. I laugh at myself a lot, at my dogs, about things that have happened in the past, about my son who is the funniest person I have ever known besides Rich. I love to laugh. Pretty sure if I couldn't laugh life would be over for me. Our family is constantly making fun of each other in some odd sort of way but it is what makes us, us. I enjoy the little things like cooking, eating, sex, love, my dogs. Yup my dogs again. I love to color in my coloring books it is so therapeutic for me. My blog. Yes this blog has helped me beyond words. Every time I struggle I am so thankful I can come here and slap all my struggles down. The writing process also helps me with the mental process and for that I am very thankful. I love cooking and more importantly eating. I think my love for cooking comes and goes more now than it use to because there are days I just don't have the energy but when I do it I still enjoy it. I can still keep my house clean. It might not all be on the same day but I can still do it. I love to walk in the woods and am thankful I can still do that. My list could go on on and on. I think you can get the point of this. I believe the world makes us feel like what we do is never enough. We have to stop listening to all the messages out there that bring us down and make us feel like we are never good enough. This is such bull. Be happy where you are at even when it doesn't compare to others or to the rest of the world. Who cares. You have to make your own happiness. 

I realize in the end that it isn't at all about what I can't do but what I can do. It's in all the little things because all those little things add up to a lot of goodness. Goodness for my heart, soul, mind, and for other people who's lives I touch. Those little things are my life, my life while living with chronic illness, but my life none the less. Realize what you can do and press on my friends no matter where you are at!

God Bless!

Dianne

Just When I Think I'm There I'm not

Year of diagnosis. This has been the year for me. In May I finally got my true diagnosis from the Rheumatologist. I have said this before as I've had years of waiting, being told its this, it's that, but never really having the 100% diagnosis. The relief that comes in the knowing gives you an odd sort of peace. I've said it before and I will say it until I die, "A person knows when something is wrong with them." Listening to doctors tell you that you are fine or overweight or need to exercise gets old as you are living in hell. Hence the reason diagnosis brings relief. I thought my diagnosis list was already long enough even before the true diagnosis. If you saw my list you would have to believe this woman is nuts. How can one person suffer with all of this? Seeing a new doc is almost humiliating. If and when I have appointments with a new doctor I have to chuckle to myself because I would love to see their faces when they see my list of diagnosis'. I mentally see their faces and hear their subconscious voices thinking it sure can't be a reality that someone deals with all of this. It's making me laugh outloud right now. I'm sure they are picturing some nut job that looks half dead and is depressed only to walk in the room and see my smiling face, hair, makeup, dressed nice, and my positive attitude. I can tell the way they look at me they wonder if it can all be true. Well doc I assure you, "It is!" Then I open my mouth and I'm pretty sure I blow them away. Still laughing!

I always have to chuckle to myself when I hear people say they don't go to the doctor because all doctors do is find things wrong with you. I believe most people say this because they want to believe they are exempt from illness. They think illness is something happens to everyone else and not them. I get that, I really do, especially if you feel fine. But what if you don't feel fine? If I and others didn't go to the doctor and didn't find out why we dont feel well we would continue to suffer in our misery. When it comes to some diseases that progress over time a person needs to find out what is going on in order to treat the disease and hopefully slow the disease progression down. It is all a choice and we all must make decisions on that treatment on our own. What works for one may not work for another. I know for me the drug I take works. It doesn't take it all away but it helps me to do better than if I don't take them. I've tried both and I know the effects. It is worth it for me but may not be for someone else. We all must decide.

Breathing issues hit me hard this year. I have had shortness of breath for quite a few years now but this last year it has progressed. I've noticed any fast moving caused me to be grasping for air to a point of having to stop and allow my breathing to catch up. Cold air that sends me into fits and I love being outside in the winter. I've known for some time something hasn't been right and knew I needed to find out what was going on so I mentioned it to my primary doctor. I finally have a doctor who listens to me and take me serious instead of blowing it off as nothing as other doctors in the past have. She sent me for the lung function testing and when I was there the lady who did it said it looked like I had asthma. A simple diagnosis that an inhaler would help. I left with that, finally a diagnosis, feeling. The just asthma diagnosis became a little more serious after the pulmonologist looked at the test. Asthma and Copd. Things just got real. How can this be possible? I smoked in my younger years but never a ton and for a few short years. I'm wondering abou working in the salon with all the hairspray and chemicals floating in the air for almost twenty years may have had an impact. I'm trying not to find the answer because that is what can make you crazy. I have asthma and Copd now I need to learn what to do in order to live with this diagnosis. Period. It is what it is no matter what caused it.  I am happy to say my doctor started me on a couple of inhalers and thing are improving. She also set me up with the pulmonologist to see what he/she has to say. We will go from there.

Once I give in and give up life is over, this is not an option. My head is trying to wrap itself around this diagnosis since it is a disease that doesn't get better. Treatments help it from getting worse so I am hopeful it stays at this stage. I am still exercising and going outside I am learning the precautions I need to take before I do so like doing my inhaler, wearing a scarf over my mouth, slowing down if I need to. Living! Not giving up. Pushing on. Accepting or at least trying to. In and out of acceptance. I believe that is a constant when your world sort of crumbles. The other day I realized I don't cry anymore like I use to about being chronically ill so I guess that is some sort of acceptance. Either acceptance or its because my tears are dried up from the Sjogrens, one of the two. Ha! Seriously though it's like the sadness I use to experience has changed. I'm still sad I can't live a real life but all the physical symptoms have become a way of life now. It got easier when I decided this is how it is going to be for me. I've learned to be okay with it because I need my energy to physically make it through many days and to fight the emotional stress. Fighting all the dynamics of disease is hard work that can suck precious energy out of me faster than the symptoms can. That being said there are still days I become angry and days I try to find an answer but on those days I find something to do that changes that kind of mind torture. I usually try to do something productive even though my energy only allows short spurts of time to do so. I always work hard to pat myself on the back for what I accomplished instead of beating myself up for what I didn't. A start is better than doing nothing. I wake up everyday with a head list of things I'm going to get done. I never finish the list but I do something and that is what is important. Push on and hope are the two things I tell myself everyday over and over. I hope you find what works for you as you work towards your acceptance!

God Bless!

Dianne