Hey Mom YOU Make The World A Better Place Just By Being YOU

I was sitting down last night and I don't know why but my inner soul was talking to me telling me that today I needed to post something about mom's. Now you must understand, for me, my inner soul controls my world. I get messages sent to me all the time about doing something and I must listen. If I get a message sent about a certain person and I send them a card because of my soul calling me to do so, it is almost always for a reason. You have no idea how many times someone will tell me the day that card came was the day they needed it. Or I might pray about someone and let them know the next day and they make clear why I prayed for them. One time I woke up in the middle of the night and a sweetie from the youth group that I was the leader of popped in my head. I had a strong call to just pray for her. Mind you this was 3am in the morning so I prayed for her. The next day I sent her a message and told her what happened. She wrote back to thank me and  said, "I was up at 3am puking my guts out and was sick all night." Wow! To me that was unreal. You see I hadn't seen Kate in a very long time and why at that moment I would wake up and feel the need to say a prayer for her could only be a God thing not a coincidence.

Disclaimer before I start: I do not profess to be an expert in the field of raising children but I have done it three times and they all seem to be pretty well adjusted so I must have done something right. In fact, for me, they are my greatest achievement in life and I am very proud of all of them!

So here we go mom's. I keep getting the feeling that someone is struggling with the whole mom issue right now. Mom is feeling over loaded. School has started again, maybe mom is raising kids and juggling work, trying to keep the house clean, do the laundry, shopping, running the kids all over to all their events, and then squeeze time in for homework. It isn't easy because after all of this there is no time left for you, no time to just be. If there is one thing I learned from being a parent, and screwed up on royally at times, is that you must take time for you. Even if it is a simple bath at night with the door shut or taking a walk without anyone pulling at you needing something. Don't lose your self in being a mom. I failed at this miserably. Although I do remember locking myself in the bathroom at times when they would knock on the door and I would say just leave me alone for  a few minutes, not much me time there but it was something.

Or maybe it is the mom with the teenager or child they are not getting along with right now. I love the quote I put on facebook today because I always say it. If you child hates you then you must be doing your job. Your job is not to be your child's friend, it is to teach them to become well adjusted adults. Believe me, you will become friends when they are grown up and when your job is pretty much done. It is funny because you spend all those year nagging and bitching and then the day comes when you send them off into the real world and you must rely on all you have taught them, all that they have watched you do, as they go out in the world on their own and become responsible adults. So don't ever feel bad or apologize for being mean and nagging all the time, that is what molds them for the future when you are not there to catch them when they fall.
This leads me to another point. I have watched parents who literally do everything for their kids and then wonder why or complain in later years why they are so irresponsible. I am telling you from experience, be the boss! Make them do things, don't feel bad for being a parent. That is your job. I was MOM- Mean Ole Mom and now my kids are always calling or stopping over. I must have done something right!

The best part of the job and my favorite is to just love them. Love them wherever they are at in what ever stage they are at. Allow them to explore and do the things they want to do and not the things you want them to do or the things you wanted to do but were never able. I see this so many times, parents pushing their child to do something they really do not want to do. Let them choose! Accept them for who they are and just love them even if they drive you bonkers at time.

I have one thing I always tell young mom's when they ask me about raising kids. I say, "When you look around and see or think of all the people you know who have raised kids whom are grown now, they all got through the troubles and the hard times and you will too. We all do somehow, someway. Like they always say this too shall pass and you know what? It really does!" One day you wake up and see the fruits of your labor and you will become proud. You wonder how you ever did it. but you also look back and laugh at some of the things you went through. My son has a really fun way of remembering and laughing at all the lunatic things I use to do and we just crack up. Like the time I chased him with the wooden spoon or the all the times he spilled milk on my laminate floor and I would flip out because it is like hell cleaning up spilled milk on that flooring. Or the time Katie didn't get off the bus in high school and I tracked her down, found her, and went bolistic on her in the car. It is a good thing it was just her and I in that car because I would have died if someone heard the way I talked to my child, I still cringe, but she never did that again. Now she always says, "Believe me, you DON'T want mom to get mad at you." and we both look at each other and laugh because we know what she is talking about. Thank God children can forgive their parents too for some of the stupids things we do. I could go on and on but you get the picture. What you do today becomes what you look back on and laugh about later. Of course there are all the good memories too but those are too many to list. My point is that you will make mistakes and through all the hard stuff comes the good!

My main point is don't wish for your kids to grow up. It seems we spend so much time wanting them to grow up that we forget to enjoy them at whatever stage they are at. Then before you know it they are grown up and you missed it. Believe me time does fly by. You think they are never going to grow up and then guess what? They do and you miss all the craziness, as insane as that sounds, you really do. The thing that is funny is people will say, but then you have grandchildren. I agree but nothing takes the place of being a parent. Or people say, now you have grandchildren to make up for all the mistakes you made with your own children. This to me is such a sad statement because I never felt I made mistakes raising my kids. I enjoyed them, I did screw up, but I loved them and to me that is the best thing you can give your child love and acceptance. So don't regret anything just do the best you can, the best way you know how. If your parent did something that you didn't agree with then do differently!

Now, keep marching on mom because you are raising the future generation and without you your children can get sucked up in this crazy world of selfishness. Teach them goodness and how to love others and treat others with kindness and never forget, they are watching every move you make, even when you are not talking.

God Bless you in your journey called motherhood! You have the greatest most rewarding job in the world!

Dianne

I Love What Chronic Illness Has Done For Me

As with all my posts you may read that title and think, that woman is crazy. Well, if you know me well, and many do not, I may just be a little crazy but like I say it is the good kind of crazy not the bad kind of crazy. So it is all good. Plus crazy can be fun and we all love to have fun!

It has taken me the past year to even get to the point where I could say being chronically ill is truly a blessing and not a curse. I have fought the good fight between anger, self pity, and finally acceptance. Of course I am feeling pretty good today so that may be the reason I am writing this today, who knows what tomorrow will bring. The whole acceptance thing changes when you are in the trenches of symptoms that you have no control over.

I do know the one symptom I do have control over, speaking for me personally, is the depression which often comes with being chronically ill. I feel I have been fortunate not to be one of those people who must deal with yet another illness that many with chronic illness deal with on a daily basis. Of course saying that I do not have days that I am down in the pits because I do have those days. I believe we all do even if we are not chronically ill. I have developed ways that help me to stay out of the pit. I try to surround myself with good things. Love, laughter, positive reading materials, art projects, good food, and when my mind wanders to a self pity place I pull myself out of it by doing one of these things that I enjoy.

Before I was sick I didn't take the time to do all of these self-gratifying things because I was always so busy trying to keep everyone else happy that I never really thought about me. It is crazy to me when I look back that I was always more worried about other people than I had ever been about my own mental health and well being. Now I am in a place where I can say no to people, I can think of me and not feel bad if I do so. Plus, honestly? I just don't have the energy to care what others think if I don't conform to their happiness. I have enough to deal with right now than to worry if I am there to solve their problems. It is such a freeing feeling for me! Like I stated before it has taken me five years to get here, a long hall, but so worth the trip.

I love that chronic illness has sent people into my life that I can learn from. People who deal with much worse illness issues than I. People who encourage me on a daily basis. People who understand. I love all of you! I am also thankful that I am able to use my illness to help others. I love it when I get a message or a call and someone will ask me what I think or what is really going on with me. I feel I am here to helps others who struggle or need some advice or need to know what to do in their situation. I hope my story can help others to deal with what ever may be going on with them. I mean it isn't like you go to the doctor for one appointment and they know what is wrong with you. Many times it takes years to diagnose autoimmune disease and the biggest lesson you will learn in the process is patience, something no one likes to learn or have thrown in their lap. It is very frustrating to say the least but when you can talk to someone who has been there and knows it sure does help.

Being chronically ill is very time consuming. It is exhausting. It is a learning process. It is like starting over in school and learning every possible thing you can about all the subject, the subject being what is going on with your body. You must continue the learning process because every week it seems something changes, new medications come out, new studies, new this, new that. I really do feel like I am in school literally everyday.  Whether it is from a website, a post on facebook, or something in the news. (of course I try to avoid the news because for me it is very toxic) Bottom line is I believe education is your friend and it can do nothing but help you as long as you are willing to dig into the information that is available to you and make the effort. I have learned no one, not even your doctor, is going to educate you as much as you can educate yourself.

So I push on! I hope you do too. Even if you are not ill with chronic illness maybe you have something else you are learning from. I hope you continue to use what has happened in your life to not only better yourself but to better the world!

God Bless!

Dianne

Be True to Yourself

I really don't have much to write today but for some reason I am being pulled here. I feel this post should have a big red warning sign that goes something like this: I am not responsible for what ever happens to appear on this post. So, don't say I didn't warn you.

This past month is going to kill me. I am not good at taking care of a sick person. I am selfish but truthful, I am tired, I am sick, and it is just very hard to have the energy to try to figure out what is going on with someone else when I am hardly able to keep my own head above water. You would think that a person who lives with illness on a daily basis would be the perfect person to live with when you are not feeling well. It seems the complete opposite is true. I do not know what to do when Rich is sick. I can't tell him anything. I can't tell him he will get better because after all I have been through my track records states different. I don't know what to say when he says he is done going to the doctor because I say the same thing quite often and understand fully why he says it. When he asks me what I think it is very hard for me to answer him. This list could go on forever but you get the point.

One thing I do know is I am tired and weak both physically and mentally, I can pretty much state that we both are at this point. I try to push onward and keep up with things around the house, the things Rich usually does so he doesn't have to worry about them while he is just as tired and weak. It sure isn't easy.

I am at the breaking point with doctors appointments. I must say we have had wonderful doctors that we have dealt with, neither one of us can complain or blame them for not having answers as to what is going on. Their staff? Not always the same response and I am about to lose it one of these times. Rudeness is not something that I deal with well at all. So as I posted the picture on my facebook today that said, danger mouth operates faster than brain, it is true. I cannot take one more MA treating me like I am an idiot when I know Rich's medical history better than he does. It especially pisses me off when he tells me to talk to the MA and they tell me they need to talk to him. Funny because I do have ALL the information down to a tee and I do have all the legal papers to show I CAN SPEAK for him, and not only that I am living with him and see what is going on. Now I know when things are not going well a person tends to be on the defense much more and may get a little more pissed off then usual but some of these people I have dealt with before and it is just becoming common place. Unacceptable!

So what is this post about? Be true to yourself? I have absolutely no idea. It is just what popped in my head so I wrote it. Or it could be the sleep deprivation that is catching up to me? Or the stress that is killing me? Or stupid people? I better stop because the mouth is taking over the brain again.

In the end, all I want is for Rich to feel better and I guess that would be me being true to myself.

Now I hope for Gods Blessings to flow on us just one little blessing of wellness for Rich, that's all.

Dianne

Chronic Illness Has Taught Me So Much More Good Then Bad

Being chronically ill can be brutal to say the least but it also has many hidden gifts that come along with it. The other night I was thinking of all the lessons, good and bad, that chronic illness has taught me over the years and decided to make a list. Once I started I couldn't stop and I am sure I could add many more. I would bet if many of my chronically ill friends sat down and did the same thing their list may look the same or they would have many things to add to their list. So here it goes what chronic illness had taught me:

1. Chronic illness has taught me I am an expert in the medical field. No I have not gone to college to obtain a degree but I can tell you just about everything there is to know about my diseases and what my body can and cannot handle. I may see doctors who are masters in their fields but have no idea what it is like to actually live the disease day to day or minute to minute. It is easy for them to say do this or do that when they have no idea what it is really like. I always say you never know what it is like to live with something, anything, until you experience it first hand. This includes death, loss, or anything people must endure through life. So yes, I have become Doctor Dianne and I do so like to be called that once in a while. I am an expert because I live it!

2. Chronic illness has taught me what works for one person may not work for another. You can take two people with the same disease, the same symptoms, and give them both the same medications or put them on the same treatment plan, it may work for one and not for the other. This is a tricky lesson. You would think by watching tv and seeing all the commercials for drugs that taking that particular drugs makes you better. This is not true. even while taking medications it is still a rough road from day to day. One day I can do a lot and other days I can just get out of bed. I have learned to except each day as it comes and live just that, one day at a time, because that is all I can do right now. I have also learned, that it is okay!

3. Chronic Illness has taught me I must respect each person I meet with whatever struggle they face. Before I might think, oh come on just get out or whatever, now that the tables are turned I get it. I now have people saying these mean and cruel phrases to me and it hurts. Not that I would have ever have said mean things to someone before I became really ill but I may just have thought it. Now that I live it I understand.

4. Chronic illness has taught me, only over the past year, that I need to let go of the people who weigh me down. The ones who treat me disrespectfully or take advantage of me. It is such a good feeling to finally be able to do this, although t is sad, it has to be done. When you get together with people and you become extremely upset after seeing them, so upset that it makes you sick for a week, you learn that you must cut them out of your life. I now focus on the good people in my life. The ones who are happy to see me, who encourage me, who lift me up, and who love me. It is a good feeling to be free of the poison that I allowed in my life for so many years. It isn't easy either as some people do not understand. You know what? I just don't care anymore. I do not have the energy to care. If I take my energy and waste it on useless situations then I am taking away from my happiness, my family, my being able to accomplish the things that I love to do. I am not willing to do that anymore.

5. Chronic illness has taught me to fight for myself when it comes to the medical field. I have some MA's that I have had to deal with who should not be working with patients. It is unacceptable. I had one a few weeks ago who was very rude and I had to be rude right back to her. I am learning to stand up for myself even more than I have in the past. Funny how when you do not allow them to talk to you rudely all of the sudden they get "nice," if that is what you want to call it. Unacceptable. I know stand up for myself more. I am a much stronger person than I ever thought I could have been.

6. Chronic illness has taught me to keep very good records of all my medial appointments, symptoms, test results, etc. I make sure I give copies to all my care team so they all know what is going on with me. I cannot assume they are all in contact with each other and believe me, they get results and many times do not read them or the MA does not give them to the doctor. You must be on top of  your case because to them you are just another care. # 8749547, that is who your are to them. Take charge and once again be your own doctor. I now take a detailed list to every doctor appointment listing anything that has changed since my last visit.

7. Chronic illness has taught me to only do the things I enjoy. Illness has taught me to enjoy painting and doing little art projects. Many days I am weak so I am unable to use a lot of muscle power without becoming very weak. So if I am having one of those days I surround myself with art supplies on the couch and make something. this way I feel like I am accomplishing something even if it is a something simple and meaningless to someone else. I try to enjoy every moment that I am in instead of thinking ahead like I use to.

8. Chronic illness has taught me about loneliness. Ah yes loneliness. Chronic illness has taught me the true meaning of loneliness. Believe me I am not longing for more people to come into my life or to tell me what I can do so I am not lonely. I have people in and out of my house on a daily basis, this is a different kind of loneliness. It is a loneliness that is much deeper. The loneliness that I am the only one who can understand how I am doing at any given time of the day. I may be weak, I can tell people I am weak, but no one really understands it. I may be fatigued, tell people I am so tired, no one could ever understand it. This leads to being lonely, lonely in my disease process. People try to understand, but it is really impossible. It is hard for me to understand myself so how can I help others understand. But I have learned that it is ok to be lonely and I do the best I can everyday to stay positive and happy.

9. Chronic illness has taught me it is okay to cry, and I do. But I will say I do not cry as much as I use to now that I have better days than I did in the past but on the days that I don't feel good I cry. It is strange but when you get so weak that you can't lift your arms over your head it just makes you cry. Just like explaining the fatigue it is impossible to explain weakness like that. It just makes you very sad because you want to do so many things but on that day your body says, ah nope sorry you ain't doin that today. I have learned on those days I do look ahead. I look ahead to the next day hoping I will wake up stronger.

10. Chronic illness has taught me my faith is much stronger than I ever though possible. I have learned that God still loves me and would never make me sick like this. Why would he?  I have served him my whole life I don't believe he would want to knock me down so far that I was unable to serve him. I have learned that I am one of his chosen ones. One that he knew was strong and could handle this and use it to help others, otherwise there would be no reason as to why I would have to suffer like this if not to help another. I said it before and I will continue to say it, God is good even when things are not so good!

11. Chronic illness may have taken away my physical power, but it has not taken away my creativity or my ability to love others and give love. When I hear of someone who is sick or suffering I am able to connect to them in a way that others can't. That is a gift in itself!

12. Chronic illness has taught me  that on some days it is impossible to be positive the whole day. Sometimes, at least for me, I just need to have a pity party, the whole, this isn't fair thing. But then when I think about it, it seems a lot of things in life are not fair. People who are in abusive relationships, not fair! People who have lost a child, not fair. People who have lost good jobs, not fair. So I pull myself out of the pity and try to lift myself up. It isn't always easy and sometime it is ok to be sad it is just a matter of making sure the sadness doesn't stay for too long.

13. Chronic illness and has taught me who my true blue friends are. The ones who can handle the chronic illness. I am sure it isn't easy for people and that is why they stay away. I think it is because they can't "fix" you and it is just easier for them to stay away. It is ok I understand, I really do. I cherish the few who still call or send me a card or message now and then they are people who have a very special place in my heart and always will!

So as you see for all the bad chronic illness has taught me it has taught me so much more good. I have learned, I am special, I am a fighter, I am much stronger than I ever thought possible, I am here to help others who struggle, I am going to make it through this one way or another, I am grateful! Grateful to my family, grateful to be able to get out of bed each day, grateful for all of you who take the time to read my ranting and raving. It helps me more than you could ever imagine and who knows maybe you or someone you know can benefit from my ranting and raving, at least that is my hope!

May God Bless your day as much as he has blessed mine!


Dianne

Dear Dr. Hayes, I Did It

So you read the title and ask, did what? Well, If you have read my past blogs you would know I had a doctor I loved who decided to leave and take a job in Lansing, Dr. Kevin Hayes. I will call him doctor for the sake of just that, he went to medical school and was officially a doctor. To me Dr. Hayes was more than that. He was a friend, a miracle worker, and someone who truly cared for me and my health.

Dr. Hayes was/is not your typical doctor. Yes, he treated me and my pain issues, but more than that he gave me tips and assured me that my health was my body working as a whole. He was my OMT, Osteopathic Manupulation Therapy Doctor. He worked on my muscles helping to relieve the pain I was so often in. After he worked on me I would feel like a new person, not only physically but mentally. I miss him terribly since he left.

It was all the little things he would do when he worked on me that helped me also. When I came in he would put music on he knew I liked, Tom Petty being one. He would turn the lights off because he knew my eyes were sensitive to the fluorescent lighting used in doctors offices. When I said I didn't do much exercises the since the last time I saw him he would say he understood, even if he didn't, I felt he did. I would tell him I know I need to lose weight and he would say right now you just have to focus on feeling better and not be so hard on yourself. He would tell me I was a "complicated" case and not a "difficult" case like all my other doctors call me. I like complicated because it keeps people guessing, while difficult sound like I am hard to get along with and I'm not.

I miss you Dr. Hayes but as the title states, I did it! I finally called a new OMT doctor and made an appointment. Now for me you must understand this is like climbing Mount Everest. It has been over two months since the last time I saw Dr. Hayes and I am doing terrible without him. So I was forced to make the decision to make this appointment. Something I dread, meeting a new doctor who will look at  me like I am crazy when he reads my past medical history and surely think, 1. you are fat. 2, you can't really have all of these problems, 3. you are lazy, and 4. you mean I have to risk my medical license and work on someone like you? YIKES! Dr. Hayes never did this to me or treated me like I was bonkers. I could walk in the room to see him and he would be able to tell how I was doing just by looking at me. He would say, you are looking good today or oh no today is not a good day is it? He just knew. Dr Hayes is the one who found out I had the two disc in my neck that needed to be fused while all the other doctors I told about my excruciating pain had told me I just need to go to PT and exercise it more, even my primary care doctor. My neck is so much better after having the surgery and seeing Dr. Hayes. I owe him so much!

So now I will fret for the next few weeks, spend hours to prepare my notes which are really a short story, and go on to meet my new victim, whoops I mean doctor and pray he will be able to help me like Dr. Hayes did. If not I may just be driving to Lansing to meet back up with him.

In ending it is my hope that Dr. Hayes reads this and comes back to me because you know I was his best patient ever and why wouldn't he want to come back to me even though I did keep him on his toes. I hope he would return for his other patients here who miss him just as much, but most of all I hope he comes back for my own selfish reasons, mostly because he made my life much more bearable on a daily basis. I hope if you have a doctor whom helps you and cares for you, like I did with Dr. Hayes, you take the time to tell him/her. After all they are people just like you and I. Well, most of them are anyways there are a few whom are questionable but I won't go there right now.

I miss you Dr. Hayes

God Bless,

Dianne

One Foot Here One Foot There

I have been thinking about writing this post for some time now but at the risk of sounding like a lunatic I have held off. Then last week I posted a song that comes to my mind almost daily, I've always been crazy but it's kept me from going insane, by Waylon Jennings. So here it goes. Hang on this is going be a crazy ride for you I am sure!

I remember reading at one time, I have no idea where, that we are all one step away from going crazy. Kind of like, in our minds, we have one foot here on the sane side of life and one foot on the other side called crazy. One slip of the foot and we could all go nuts in a matter of a seconds time. It reminds me of something I learned in Hospice when someone is dying and they have one foot here on this earth while the other foot is somewhere off in the spiritual world, something we can't experience until death knocks on our door. This is when people start to see others who have already died and they will say things like, "I just saw grandpa," or "Can you see them standing over there?" Whoever these people are that they may be talking about as they are in and out of consciousness and at deaths door is a mystery to me. I have been with people who are at this stage of dying and it is fascinating and heartwarming to say the least.

I have to say, and here comes the crazy part, for me I have never felt like I belong here. I know, I know, I know that sounds like I have already slipped over to the other side and gone bonkers, but it is true. I just can't explain it. I have never felt I have "fit in" anywhere. I wonder why I am here, like everyone does, but I just don't feel like I am suppose to be here. Never ever have.  I feel I have a bigger calling than most people and that I am in tune to so much more that is going on than just what is here on earth. Sixth sense? Could be, to some degree, but it is much bigger than that from my view. I have so many odd things happen to me in life when I am out and about in the world or with a group of people. I hope I can share a few with you without sounding arrogant or most importantly at the risk of sounding like a real nut job.

So here it goes. For one thing I have the ability to read people, not just your usual people reading like most, but my reading people ability of  feeling their energy is like no one else I know, or if it is no one ever talks about it. I can walk in a room see someone, even strangers, and just like that I get some kind of a strange sense which tells me what is going on with them, or their story. There are people I am around who have such bad energy that many times I have to leave the room because it is an energy that almost scares me. Then there are the ones who have an energy that draws me to them. A goodness. You know the type where you go into a room and are automatically drawn to someone just by the smile on their face? Well, that is all good! But truthfully my sense is much more spiritual than that form of reading people.
Rich always says that when they are going to hire someone at work, "You should come and just sit in the room because you are so good at reading people." I know many people have this but mine is just at such a higher degree then most, almost scary.

Then there are the times, almost every time I am out in public, and someone always comes up to me and says, "I know you." It almost always turns out they don't but it is just strange to me how and why people always do this to me. I honestly have always felt like I have some sort of an angelic soul that God sent me here with and that is why so many people connect to me. I know I shouldn't say it because it almost sounds arrogant, but it is not meant to be that way at all. I almost would  like to believe we all did live in another life and now we are here, maybe we all really did meet up with one another at one time or another place and we really do know each others souls. STOP! Getting too deep! I don't want to scare any of you off from reading the rest.

Or the times I may be standing at the store in an isle way or in line to check out and someone just starts to talk to me. Now, I am not talking just your casual talk I am talking life story, huge issues, etc. So, I just listen. I always feel if this person was led to me by God then I must be here in this moment for a reason. The biggest problem is when my family is with me. Steph, now you have to know Steph, will say, "What the hell? Every time we go out do you have to make friends?" I always laugh and say, "I know it just happens to me all the time." She tells me now when we shop not to look anyone in the eye cause we will never get out of the store. lol! For me? I feel it an honor for people to feel they can trust me enough to talk to me. I think that is why I was such a good Hospice volunteer. Hair dresser too, man the things people would tell me.

There are plus and minus sides to everything in life. I also believe having this gift, sense, or whatever you want to call it can be a curse at times. It is good to help others but when you have this you tend to put the needs of others before your own. You become like a magnet that people draw to. Sadly some of the people will suck the life out of you. People who know you well tend to think you are there for their needs and you owe them something. I have had to learn to stop allowing people to suck me dry or take advantage of me. This has meant avoiding certain people like the plague. The "do only for me" people. You know the ones who only care about themselves and their issues while having no regards to me or mine, as long as I am serving them. I must admit it isn't easy leaving people behind and cutting them out of your life but sometimes we just need to do this for our own good. Once the decision is made it is very freeing to say the least. For our own health and our own piece of mind sometimes this just needs to be done. This is a whole other post to write about so that is all I am going to write here.

In closing the reason I have written this is because I do not believe I am chronically ill because God or someone is out to get me. I believe I am chronically ill to help others. I am different. I am in tune to what is going on around me and in other people. I am suppose to be here for those in need, true need, not the blood suckers. I am here to care for people who hurt because I hurt too and in helping them many times I help myself. I am here to love those whom have no connection to me or will ever repay me, even if it is just listening to them in the store for five minutes. I write this because I do believe in goodness, in the goodness from God and the goodness of other people whether they can do anything for me or not. If I do not give out then why am I here? I may wake up everyday and wonder why I am here when I feel like I don't belong. I may wake up everyday not be able to give much but I can say a prayer for someone who is hurting or send someone a card. You see it really is all the little things in life that make up the big things. We are all here for something!

Until I get to where I am going I'll keep singing my song everyday, I've always been crazy but its kept me from going in sane...and hopefully stay sane! One day at a time that is for sure!

God Bless You!

Dianne

Chronic Illness Isn't For Sissies

I remember the word as a child, sissy. My brothers and I would use this word quite often as we dared each other to do all the things we knew we shouldn't do. Believe me, when one of us was dared to do somehting you were going to do what ever you were dared to do in order to risk the label sissy because if you didn't you knew you were going to be called a sissy for a few days at least.

As I awake on my seventh day in hell, fatigued, hurting joints, weak, and......the list could go on but I'll stop. I think of being a sissy while living with chronic illness. Many days I think I am a sissy and I call myself it when I can't do even one thing I really wanted to do on a certain day.  The other day I was thinking about being a  sissy? Really? Am I a sissy? When I really thought about it I thought to myself I don't think I am a sissy at all. It takes a very strong, courageous person to get out of bed each morning to only face another day of illness.I have to talk to myself like this or else there would be no reason to get up. So up I got and here I am again today, up!

So sissy? NOT! I had to wipe that word out of my head but not before I thought of a few of my fellow chronic illness sufferers. I think of the the young mother on a vent who still manages to make jewelry and raise a son along with many other activities, I don't know how she does it. I think of my friend who with the slightest brush up against the wall breaks a bone almost weekly. I think of my friend who still forces herself to go shopping and gets there only to get a few things and is unable to even walk but still goes none the less. I think of a man who has one medical problem after another but still encourages me everyday with his spiritual posts. I think of my friend who wrote so many books on having courage and pushes on as she has already had seven joints replaced in her few short years but still encourages others and also serves as a judge in Lansing Michigan. I think of all my friends who are able to work. Who push through all the pain, weakness and suffering by going to work everyday and more than likely never letting anyone know how they are really feeling. I think of my friend with RA who posts encouraging healthy articles weekly to encourage us to take better care of ourselves. I think of the young mother who can no longer work in the medical field but is still here to give her expertise advice and help me and others. I could go on forever but I think you get the picture.

So you see, this chronic illness isn't for sissies. It is for heroes. For ordinary people who at times might think their lives don't matter all that much anymore,when in reality they do. Some of the strongest people I know. People despite their set backs and limitations are still stronger than some of the healthiest people I know. People who still get out of bed despite it all. People who don't complain much because this is their life now and they are making the best of what they have been given. People who inspire me to go on when I am in a flare and really don't care about much because I just don't have the energy to care as my body uses the energy to just keep me going.


You know who  you are! I thank each and everyone of you for not being a sissy because you give me strength on the days that I am one.

God Bless each and everyone of you!

Dianne

The Love Hate Relationship With Drugs

Boy it sure isn't easy when you have to depend on medications to just exist. I hate it more than you could ever even begin to imagine. A drug for this a drug for that gets old in a hurry. But then when you have to have them just to be able to face each day or sleep each night you begin to form some kind of an odd friendship with them.

Every week I go through the tug of war with my drugs. The I quit! Whats is the difference anyways? When I have these flares that last more than a few days I argue with myself and wonder what do I take all this crap for if I am going to have so many bad days anyways? I argue not only with myself but with Rich. At least once a week I say, "I am just going to get off all this crap," it makes me laugh. I know I shouldn't do it because he gets so mad at me and reminds me of how I was before all the drugs. I always say I know but maybe, just maybe if I stop all this madness, meaning popping the pills, I will be better than I was back then. He says, "No, don't you remember when you asked Dr Glisson about this and he said he didn't think it was a good idea?" Yes I do remember but I am just so sick of it all. Poor Rich. The funniest part is each week every time I say this he rolls his eyes and says, Oh no not this again." hahaha makes me laugh cause I can see his face every time even now as I write this. God bless that man!! I tell you he deserves the best spot in heaven when he gets there just for all the crap he puts up with me.

Another pain is keeping up on refills, blood tests, doctors appointments, which have nothing to do with the symptoms I live with, just more things to worry about and keep straight, hard to do when your memory is shot from pain, weakness, and meds. Of course all of my drugs do not run out at the same time so it is a full time job remembering to keep everything stocked. Then there are all the over the counter meds, vitamins, thermacares, and any other necessities that I must have to live each day. Plus the expense. We were talking last night about how people spend money on useless items while all our extra money goes to my health. While others are out shopping for new outfits I continue to make my old cloths due because I need to replenish my supply of necessities before I shop for new cloths or other wants.

Just as quickly as I talk about getting off one of my prescriptions, a few weeks ago I found out that one of my meds it is currently not available from the manufacturer. I still have a week or two left but I am beginning to freak a little. My talk of stopping all my drugs is just that, talk. I know it is not something I should even think and now as I may be forced to stop the one drug that has helped me more than any other I am getting nervous. The drug is available in pill form but I am on the injections. My doctor put me on the injections because you can only take so many pills and the dose will do nothing the more pills you take after a certain dose, so she started the injections to get more relief. I do know but if I go back on the pills the maximum amount of pills I take is only 1/2 the dose I am on with the injection. Hence, the worry. I don't care about the pain, really, pain is something that you get use to. My concern more than anything is the weakness. If the weakness comes back I will be on the couch and to think of going back there scares the hell out of me. You have no idea what weakness is until you are put out flat by muscle weakness. It is brutal to say the least. At least now when I get weak I can still do things around here I just do them a lot slower than I use to.
Of course I can always increase my steroid use if this drug shortage continues but I surely do not even want to think of that option. We'll just leave it at that.

So for now I continue on, not feeling great this week, but moving forward none the less. Hoping and praying that my drug becomes available here in the next few weeks. If not? I'll be back here complaining to help make myself feel better. Until then, lets hope and pray!

Even when things are not so good God is still great! He gives you love and the love of people here on earth. What more do you need? Oh, besides drugs?

Dianne

A Funny Thing Happened On The Way To My Life - Facebook

I just have to tell you it is so amazing to me how things work out in life or how God allows them to work out. I sit on this computer a few hours a day, on and off, doing the few things I am able to do in between and resting on here while my muscle power builds back up to do the next little thing on my list. Every time I sit here I am inspired and my thoughts are provoked each and every time by something one of my friends posts on their facebook page. I am truly blessed with such a diverse amount of friends from all over the world. Your thoughts. posts, comments and likes give me the courage I need to get through each day as I am alone most of the time.

Along with all of your posts you all know how much I post. A lot! Then I get to a point, a few times a week, where I think to myself, enough is enough. Tomorrow I am not posting so much and I am not going to go on facebook so much. Then, I wake up, grab my cup of coffee and the fb addiction starts all over again. Oh well, tomorrow is another day I'll stop then, then I just laugh at myself.
It seems I just get to a point where I feel like all the stuff I post may just be taking up space on someone's home page and I need to stop. Then, something strange and wonderful happens. It seems almost weekly and sometimes more I get a special private message from one of my friends, sometimes someone I know or have known in the past, or maybe someone I have never met personally. Their message is a sign to me from God that tells me I should just continue to post what I want. Their messages tell me how I have helped them in ways that I never could have imagined as I am thinking I am just posting to much and many to times I do it to help myself also.

Little do these friends know that every time I receive one of those special messages it brings me to tears. You see, my life now has dwindled down to a very small existence and I feel I am unable to touch lives and help people like I always was able to do in the past. When this happens you begin to feel worthless and wonder why you are here. But then there is a light that shines brightly and ignites my fire when I get a message like I did today that makes me realize my life, and being here, still does matter! Every kind word, in a message or on my site, humbles my heart. Every like makes me smile from the heart to think that others are actually interested in what I post. I thank all of you, even the ones who do not send me messages or comments or likes, you ALL give me a reason to continue on when I don't understand why my life has to be like this. You all help me realize it is what it is and I am still here to help others even though I am unable to do that physically. You all have touched my life and I thank you!

May God Bless all of you in the way you bless me every single day!

Dianne

In Sickness and In Health

When Rich and I took our vows a little over twenty seven years ago we were both twenty one and in pretty good health. It seems when you are young you really do not concern yourself with the in sickness and health part of your vows. You are young so your concerns are centered on so many more things than health. In reality, when you are twenty one you are going to live forever and bad things like illness seem to always happen to older people and certainly not you or at least to someone else. Then as time goes on and your body begins to break down because you are getting older or certain diseases begin to take over it all changes. All of the sudden you realize that those vows really do come into reality and you are at one time or another dependant on one another when those times of illness hit.

Of course as you all know our test of those vows has really hit home hard over the past five years for us with me becoming ill. It seems we have come accustom to Rich being the caregiver and me being the helpless little sicko. I try the best I can and do the best I can but I still depend on Rich for so much of my day to day living, and I must say he takes the role very serious and takes such good care of me. All the little things such as feeding the cat and cleaning the litter, emptying trash (do you realize how many of those their are in your house?), carrying heavy cloths baskets, just all the little things I am unable to do that most every one takes for granted. I do appreciate it so all that he does for me and he has been a perfect example of what our vows actually meant. I always said it is such a good thing I got sick and not him because I don't think I could ever do what he does for me each and every day. But then as I told him this morning, maybe I could have done it but in my head I can't because I am the sick one. If I never had gotten sick then I wouldn't have known what is was like to feel sick and I would have been able to take care of you if it happened to him, does that make sense? It does to me in some strange way.

Then a few Sundays ago hit and the tables turned and I was the the one dealing with his illness, not mine, Rich's. It is so painful for me to watch. I make a much better sick person than a caregiver, it is just easier being sick. It is brutal when someone you love is sick and you can't make them better. I know the look I see it in Rich's eyes everyday.

All the thoughts rushing through my head as a sick caregiver are way different than those of a healthy caregiver. I can handle all the emotion Rich has with dealing with all the questions as to what is happening but it is the other part I freaked about. The physical part. Now, who is going to take care of "us?" I can't do it. It is a really scary thought not to mention you have no idea what is happening to the one you love and trying to deal with all of that. So it has been almost two weeks later and we are getting by. Today Rich saw the specialist for what they think may be a small brain anuerysm. We, meaning us and the doctor, are hopeful it may not even be an aneuyrsm. We will find out next Friday when they do an angiogram and can pinpoint what is going on. We are both very relieved after this mornings appointment. Dr. says even if it is one it is small enough they will just have to watch it. So in the end like I always say things can be bad, very bad, and scary but God is still good. He gives us one another to have and to hold from this day forward til death do us part and he gives us strength in sickness and health. Sometimes just a little bit of strength but still enough to at least get us through each day. We take each day as it comes because we do not know if that is our last one we will have here. We love the ones we love and we care for them the best we know how to do in sickness and in health! We are blessed! I truly believe and always say God knew just what he was doing when he joined Rich and I together and for that I am grateful, til death do us part!

God is so good!

Dianne

One Of My Chronic Storms Just Rolled In.

I posted on my facebook page that I was going through some old pictures today. I went downstairs to Steph's old bedroom which we now turned into a scrap booking room. When I went down I was happy to feel well enough to go down there and look at pictures of my loves. I sorted through some of the stuff I had been throwing in the room as a few months have past since I had actually done anything in that room. Boy, it sure was dusty, but by now I have learned that dust truly can become your friend when you do not have the muscle power to even clean. Ah who cares it is just dust plus I have also found if I dust today it will just be back there tomorrow and if I leave it you can't tell the difference anyways. Who cares? Meaningless these days to me to say the least.

Ok so here is how it went for me. As I sat down there sorting pictures, for only an hour mind you, I now feel like I have ran a marathon. What the heck? My eye is drooping, I can't see straight, which is an issue even when I am not doing anything physical, I am weak as ever, and I feel totally exhausted. How can someone continue to live like this? I wonder this when the storms hit. It is so very, very  frustrating! It sure isn't fair, if life is ever fair in any respect to living with chronic illness.

 Although I did quite enjoy my hour down memory lane. I just wish I could be "normal" and have a somewhat "normal" life. If I am not sitting and taking it easy all the time, literally all the time, I turn into a complete mess. I just don't understand it. It makes me very sad. These are the times that send me into tears because when you feel so weak you become very sad and vulnerable to the possibility of  becoming depressed, something I fight everyday. I will not, I will not, I will not!! Weakness like this is unexplainable so I will not even try to explain because truthfully I don't know how to explain it. The one and only way I can is to imagine walking through thick mud up to your neck and you finally get out of it. You know how weak your muscles would feel after that? Well, there you go.

It is also hard because I feel I have so much to offer the world and am unable to do so. It is a vicious circle of misunderstanding for me. Espeically when I look around me and see the selfishness from people who never do or care about anyone else and that is all I want to be able to do, care for others. I miss being ME! I miss volunteering with my Hospice patients whom allowed me into their lives and confided in me. People whom I cried with, and loved. I miss being able to just go out and be able to go to grocery shop, come home put things away, and then  make a meal for my family and/or someone in need all on the same day, now this takes me a week. It saddens me when I want to work and can't. It hurts even more when I have to listen to others complain because they have to work. I miss my friends. I miss people. I miss weekends of fun and laughing and getting crazy with people I cherished whom now I do not have the privilege of spending much time with at all. I miss being able to say, "YES I can help" and now having to say "I'm sorry I just can't" and trying to find the right words to tell people why. Most think you are just crazy or making it up, or at least it feels like it to me. My past life is something I miss terribly. It is so hard to have to even admit that taking an hour to organize and look through a few pictures can bring me to my knees and turn my eyes into a water faucet. I miss many things but I do know that I am still very fortunate compared to others who suffer on their own journey of illness or loss.

I am fortunate because I am able to stay home and take care of myself as many of my other ill friends still have to work. I have no idea how they do it but I guess when you have no choice you just do it. Fortunate because my husband has a good job to help pay the bills and have health insurance. I wonder what we would do without that all the time, just let the bills pile up? Fortunate because I have God and a belief that someday this will all be over and I will be in a much better place free of pain and suffering. Fortunate because I have the love of a good man and my family. Fortunate because I know people do pray for me. Fortunate because I have hope. The hope that one day I may wake up cured. You see in the midst of all the bad that can go wrong there really is still good. You just need to wipe the tears and look around to see it and remember it.

God Bless!

Dianne

Your Legacy

What is a Legacy? Really! I mean we think of a legacy as something we leave behind when we leave this earth but in reality are we not living our legacy each and every day? I was watching a show and Oprah was talking about this so of course being the deep person I am I began thinking, no wait, obsessing over this issue. It made me think of a few things as I thought about it today.

In all reality, what you do today will become your legacy.  I always think about when someone dies we all the sudden turn them into a perfect person. Of course this does not mean many of them were not really good people it just always makes me wonder when I hear someone say, what a great person someone was, but the last time I saw them they were bad mouthing the same person. That is always very curious to me.  Another very curious thing to me is when the people you think should care about you don't and how the people who do care about you shouldn't or really do not have any obligation to care about you, do. I don't understand so many things in this life. I really don't. Especially when I am struggling with all the why's of life. I hate to ask why and truthfully try to avoid that question it at all costs and just let things work themselves out. I have to or I'll go bonkers.

So in conclusion, through the eyes of Dianne, I believe with every person we meet we leave a piece of ourselves with them when we leave. Just as we take a piece of them with us when we go. Think about it. When you think of a certain person, insert person here________________________. (Do this with a few different people, after you read below, and see what happens.)
As you do this your heart is either smiling about that person or maybe it has reservations about them. I have people who leave my heart filled with nothing but pure joy but there are also those who fill me with sadness or anger me because of their actions towards me which I do not understand. But I still know I must try to be the person who leaves a smile on someones heart, as hard as that is sometimes with certain people. 

Don't wait to be a nice person, you just might miss your chance, be a nice person everyday that way you have nothing to worry about. The best part is you won't leave that yucky feeling in someones heart even if they leave it in yours. Plus when your time comes to leave this earth people won't have to lie about you being a good person because you made it a reality.

Of course with all of that being written you may need to be very cautious as you continue on your journey. When you are a kind hearted person people have a way of trying to take advantage of that kindness. You must learn to decipher the difference between kindness and being taken advantage of. It isn't easy because people have a way of thinking because you are kind you owe them everything. You must learn that you don't. You must learn sometimes it is better to stay away from some people for your own good. This does not make you a bad person it just means you care enough about yourself to take care of yourself. I'll end on that note!

May God bless you with kindness and goodness!

Dianne