Thursday, September 29, 2011

When Bad Things Happen to Good People.

When bad things happen to good people is a phrase that runs through my head everyday of the week. I use to say it even before my mother bought me the book with the same title. The book is written by A Rabbi, Harold S. Kushner. His son Aaron was born with progeria a disease where a child's body ages much faster than the years they have lived. His son died at the young age of fourteen. The death of his son, whom he adored, brought him to write the book. He wrote this book not only to help himself deal with his loss and the of question of why do bad things happen to good people, but to help others who struggle with the same question. I highly recomment this book to anyone who struggles with any ongoing tragedy, illness, or other continuing conditons that they are unable to make any sense out of. For all of us who are Christians the author is very truthful about matters about God. How we feel betrayed. How could God let this happen? His insights are very helpful and encouraging. I will say no more as I hope you will purchase this book for yourself. The last time I bought one for a friend it was only $10.00 at Family Christian Book Store or Barnes and Noble. One of the two place, of course I can't remember. I hope it helps you as much as it has helped me.

I am reading it once again, as I do once in a while to slap me upside the head when I don't understand life. One thing I do with books that I really like is underline all the parts that help me so when I am having a bad day I can refer back to a paragraph and meditate on it for a while, this is the perfect book for that! Right now I don't understand many things. I truly have finally come to somewhat a realization that my illness is here to stay and I am ok with that on most days, not that I understand it but I am friends with it now instead of fighting with it all the time. This makes each day so much easier.
As I look around me and see and hear stories of people I care about suffering it rips my heart out and takes me back to the place of when I was very ill five years ago. I can feel what these people are suffering through. I want to help them get to where I am but that would be impossible. I have found over the years the struggle was all mine, just as their struggle is all theirs to sort out. Time, that is all it takes, time! I hear or see people write the stupidest things to people who are struggling like, stay strong, or don't cry, or it will get better, on and on. Obviously these people have never had a major crisis hit them because if you have you would never say or write those things to people. Sometimes we just need to get to the breaking point and let lose. There is nothing wrong with that it is what gets us to a place of understanding, this can take years.
Truthfully from the Dianne point of view? Sometimes people really just need to SHUT UP!!! Silence really can be golden.

So as I watch people suffer, the person I am in love with, other people I love, people I know well, people I do not know well, I do know one thing. God is there even when it seems he isn't. Even when you want to scream and yell at him, why would you allow this to happen to me/us? Sometimes it is easier not to blame anyone and realize that in this world of sin there is pain and suffering and we just don't know why. But also to understand that through it all even when it doesn't seem like God is by your side and you are struggling alone, he really is there carrying you the whole time you just forgot to feel him and that's okay! The best part is he won't leave. When you are ready to come back he will be there with open arms waiting for your return. Until then, you go through whatever you need to go through, the good, the bad, and the ugly. Then one day you really will start to see the good in the world once again and realize everything does happen for a reason. God will be there right with you on that long, lonely journey that only you can take.

Blessings to all of you!


Saturday, September 24, 2011

I Will Not! I Will!

I woke up this morning, after a short night out like they always are, feeling awful. The chest pain seems to be getting worse instead of better and I am coughing up things that I thought only sailor's could cough up. This is really depressing me! I am not a depressed or depressing person but when I am sick and alone it makes it so much easier to feel down and sorry for myself. So I was sitting here thinking how can pull myself out of this funk? Of course the first thing I thought of, as I always do, "What can I eat?" Then I thought, stop that, you are going to turn into the good year blimp here soon! So, I pushed the food thoughts right out of my mind and figure I will save them for later today. Maybe some M & M's or a pizza, or......STOP! See there I go comforting myself with food again. Then I thought, BLOG!!

Anyways, I started thinking some thoughts to myself  along the lines of the I will nots and the I wills for today and I knew it would help me to list them and maybe help some other people too. You have no idea how much it helps me to write all this stuff down and can turn my way of looking at things into a positive. So here it goes:

I will not waste this day!
I will get off this computer and get in the shower as soon as I am done with this entry!
I will listen to lots of my favorite types of music!
I will not eat like the ravenous pig that I am just because I feel sorry for myself!
I will get out for a bit without trying to spread my germs. Run to Hobby Lobby and get some new paints!
I will come home and paint something and not just think it in my head!
I will not give into self pity!
I will do something nice for someone else today. Even if it is just sending a card!
I will remember all the terrible tragedy's others are facing at this time and remember how fortunate I am!
I will not give into depressing thoughts and every time one comes in my head I will block it out with goodness!
I will not think I can't do this when my body tells me I can't. Yes I can!
I will continue to believe all of this happens for a reason even if I cannot see what that reason is today!
I will keep sending up my prayers for others!
I will remember the innosense of my grandchildren and the smiles they bring to my face and my heart!
I will think of all the good people in my life, besides my family!
I will not forget all the love I have surrounding me when I think my life is worthless!
I will continue to believe that someday I will be "normal"again!
I will not allow all my physical limitations, limit the goodness I hold in my heart!
I will not cry as I write this!
I will not cry as I write this!
I will not cry as I write this!..........

So you see, even when you live a tiny little life you can have good in your life although on someday it can be unbearable you can always find the good in most everyday that God puts air into your lungs! So now I am off to take that shower, put something pretty on, do my hair and make up and look in the mirror and say wow if only the inside could polish up as nice at the outside. Ah, to dream!

May God Bless Your Day Too!!


Thursday, September 22, 2011

Standing Up For Myself And It Sure Feels Good

I must tell you I am not a complainer, not at all. Anyone who knows me would attest to that. As I sit here today I just can't win, but I am not complaining. As you know a few weeks ago I was blessed enough to feel well enough to go to the Michigan vs. Notre Dame game with Rich, Richie, and Leah. Truthful? I could have cared less about the game I was just happy and thankful to spend time with a few of my loves! The minute I made the decision to go to the game I knew there was going to be consequences to pay, as usual. Yup, it is true I am one of those, I am almost always right on everything. Just ask Rich. If he tells you different please let me know so I can set him straight. Yes, I am paying the price.

You see, being chronically ill, and having to take drugs that make my immune system weak, weaker than it already is, always causes me issues. I must be very careful to stay away from large crowds, and stressful situations or people who stress me out. Every time I am get around these things I end up getting ill. This time is no different. I am almost sure I know where most of the germs attacked me that day. It wasn't at the game it was those stinky grungy, germ infested port a potties at our tailgating site, but I'll leave those gruesome details to your imagination. One thing I will say is that when I got back to the car my hands were taking a bath in hand sanitizer but I am pretty sure the fumes inhaled into my nostrils couldn't have been killed even if I had snorted enough hand sanitizer to fill my sinus cavities to full capacity. (I hate that word capacity I can't even believe I am using it right now)

The first few days after the game I was very tired I tried to sleep more to make up for all the extra energy I had to use the day of the game. In my mind I always try to use the, well if I do this it will cancel out that mentality. Do too much? Sleep more! Better! Wrong! My sinus's started hurting and I thought oh great here we go. I have been fighting off the warning signs in my head. Waiting and telling myself that tomorrow I will feel better. Plus, when you see doctors on a regular basis the last thing you want to do is call  them when you have a cold. Finally after the past few days of some serious chest pain, coughing, and shortness of breath I decided it was time.

You must understand making this call to my doctor is extremely painful for me. It is like the scene that goes something like this, if you can picture it. I pick up the phone and the phone becomes like an alligator. Think of a man wrestling with an alligator. This is me with the phone. Truly, we are rolling around on the bed and finally I must give in and dial the numbers. Not the kind of rolling around on the bed I like but whatever. Although I am starting to develop a bit tougher skin on the outside and even on the inside. After all an alligator has tough skin so why can't I, especially after the phone just tried to kill me. So this time my message sounded something like this: Hello, blah, blah, blah (the explanation to the nurse of what is going on) then something I have never done before. AND TELL HER (my Dr.) I AM NOT GOING TO URGENT CARE! WOW! For once it worked I really stood up for myself. I mean really after having umpteen million infections in my chest I think I can be classified as my own doctor by now. Really! Also, if you need a diagnosis you can call me too, I am usually spot on if you give me your symptoms. One of my friends even calls me DOC.

So within a few hours I called the Pharmacy and TAADAH! There it was,a script for an antibiotic. Don't get me wrong, not that I am happy to have another script added to my regimen but I am happy to say that tomorrow by this time I will be feeling better and able to spend some quality time with the ones I love! That makes standing up for myself all the sweeter!

Plus, now I can say I AM sick so I really do need some ice cream to help me feel better :)

May God Bless You All!


Tuesday, September 20, 2011

30 Things About Invisible Illness You May Not Know

I saw this on a site I love called butyoudon'tlooksick (but you don't look sick) and thought I would recopy and share my 30 things about living with Invisible Illness. I love this!
1. The illness I live with is:
Inflammatory Arthritis which my Rheumatologist thinks is RA but not 100% sure. Myasthenia Gravis? Many others that are not worth writing down.
2. I was diagnosed with it in the year:
2006 with Inflammatory Arthritis. MG was 2007 diagnosed, undiagnosed, then diagnosed, the roller coaster continues as I see a Neuro-Opthamalogist regularly for this.
3. But I had symptoms since:
The birth of our son Richie, 1990
4. The biggest adjustment I’ve had to make is:
Becoming a whole new person and having to give up many of the things I love to do. Physically most are just impossible now days.
5. Most people assume:   
Because I look so good I can't be that sick. I say the only people who know how sick I am are the ones who live with me. Or people assume that all I need is a better diet or some magic vitamin and I will be better. This erks me when they have no idea what is going on medically.
6. The hardest part about mornings are: 
Getting my eyes to focus and loosening up my whole body. Just getting myself going.
7. My favorite medical TV show is: 
Mystery Diagnosis. I can relate to every story. You suffer for so long and every doctor has a different answer, very frustrating. I watch that show and just get pissed off that people have to live ill for so many years until they find out what is going on. Many times it makes me cry because I know what it is like. The whole show I am saying, stupid doctor, idiot, one and on.
8. A gadget I couldn’t live without is:
My bathtub to soak my stiff body in and my pillows that surround me at night.
9. The hardest part about nights are: 
Waking up a million times to move because of the pain and stiffness, it doesn't matter how many drugs I take or what kind I take this is a given for me.
10. Each day I take: 
11 pills in the morning and 4-5 pills at night then once a week I do an injection of Methotrexate.
11. Regarding alternative treatments I:
think they are wonderful for those they work for. We all must make our own choices when it comes to our treatment.
12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I have been sick long enough that I am use to the snide comments and I have really learned to let it all roll off my back or speak up for myself. Plus, I just don't care anymore what people think as I only try to focus on the good in my life.
13. Regarding working and career: 
I dream of working again someday. I hope someday that is possible for me!
14. People would be surprised to know: 
I am ready to die. Don't get me wrong I love my life but if I die it would be a good thing. See that is a surprise, I know!
15. The hardest thing to accept about my new reality has been: 
That  my world has shrunk to a very small existence. A very tiny world but a good tiny world.
16. Something I never thought I could do with my illness that I did was:
Start this blog. I never thought I would ever share my inner most thoughts with people I have never met. It helps me so much!
17. The commercials about my illness:
Are misleading. I do not doubt some people do get to go out and do whatever they want after treatment but for me everyday is like riding a bike up a steep hill all day long.
18. Something I really miss doing since I was diagnosed is:
Working in my yard and meeting my friends for coffee or lunch.
19. It was really hard to have to give up:
Reading. I miss reading so much but with my eye problems it is just so hard. I can read for 5 or 10 minutes and have to stop. It makes me not even want to buy any books anymore. That is a huge loss for me.
20. A new hobby I have taken up since my diagnosis is:
Making cards for fun to share with others.
21. If I could have one day of feeling normal again I would:
Go for a long walk in the woods, do some gardening, run at the park with my grand babies, read a book from cover to cover, cook a huge meal for my family and sit down with them to eat it, plus many other things! You have no idea how hard it is to write this stuff down as the tears roll down my face.
22. My illness has taught me:
What really matters in life and who really cares and who doesn't.
23. Want to know a secret? One thing people say that gets under my skin is:
"You just need to get out more." That one drives me BONKERS!
24. But I love it when people:
Say they understand, even if they don't.
25. Favorite quote or saying:
Some things happen to us from which we never recover, and they disrupt the normalcy of our lives. That's how life is. Human nature has a tendency to try to reconstruct old ways and pick up where we left off. If we're wise, we won't continue to go back to the way things were. (we can't anyway)We must instead forget the old standard and accept a "new normal".
 26. When someone is diagnosed I’d like to tell them:

I understand and tell me about your story!
27. Something that has surprised me about living with an illness is:
How much my family loves and cares for me. Especially my husband.
28. The nicest thing someone did for me when I wasn’t feeling well was:
First and foremost Rich but besides him my friend Kim Seitz. She is always doing nice things for me. When I was really sick she would bring meals to us all the time and send cards or call. She is a gem! She still sends me cards that brighten my day. I love her like crazy! A true friend!!
29. I’m involved with Invisible Illness Week because:
I want to support others who suffer as I do and make people realize just because someone looks good doesn't mean your insides are doing good too. They may be eating you alive!
30. The fact that you read this list makes me feel:
Special and like you care. It tells me you have a kind, compassionate heart for others to care enough to read it. Thank you!

Monday, September 19, 2011

Love! It May Be Something Different To Each Of Us

Last week I posted something about love. I received a comment from a friend that made me start to think about love, the true meaning of love. I have been pondering on love all weekend. Rich and I even talked about the different kinds of love listed in the bible.

How in the world do you define love in your own terms. As for me, I believe love means something different to everyone. There is the love you have for a friend. The love you have for a parent. The love you have for your children. The love you have for your spouse. The love you have for God. The love you have for your grandchildren. The love you have for strangers. The love you have for things. This could go on and on but I am sure you get the picture.There are many different kinds of love and how we define them are ours, and ours alone. No one can say you are wrong because we all experience love in different ways and some times that love is determined by the relationships we have developed with someone.

When I think of love and the way I define it is more than the feeling(s) of love. It is the thought that the love I carry for people, whom I truly love, lights up my heart when I see them and it continues to keep my heart warm when they are away from me. It is something that encourages me to go on and to be happy I have them in my life. The warmth that is there until the next time I see them when the fire is lit up again to an even warmer glow. It is like a never ending circle for me. When I don't see the people I love my glow goes dim but none the less it dreams of the day I get to light it up again like when you put fresh logs onto a fire.

Then there is the love my husband, Rich, has modeled for me. Rich has shown me a love that I have never known before. Yes, I have had a love like this from my children, the love of, I need you, but I am talking about a deeper love that is almost unexplainable.
It happens a lot with him. It is the unspoken love. The love I feel in the air. The love he sends me in his eyes. The love I feel when we are together when no words are spoken. The love he leaves me on the counter in a note almost every morning. The text he sends me when we are sitting in the same room, that tells me you are so beautiful, that makes us laugh out loud because neither one of us can understand how the youth of today can send texts to each other when they are sitting five feet apart from each other. It is when he tells me he is the luckiest man and I just don't understand why he says it as tears roll down my face. It is when I call him or he calls me to just see how I am doing and when it isn't so good he offers to drop everything and come home or go to the store if I need something. It is how he takes over when I'm weak or in pain. You see, it is all the little things that make up one big thing, our love. Unexplainable love, yet very explainable.

In reading this love is more than a feeling it is a commitment, a life long promise to someone you love. It is not being able to live without one another while at times wanting to run as far away from each other as you can, something I am sure Rich has felt but has never let onto it. Love is a give and take. With as much as Rich gives to me I do not like to continue to take from him. It rips me apart on the insides but I also know, it is what it is. I try as often as I can to give back to him. It isn't much what I am able to give him as it takes so much energy for me to just get through the day. But I still try none the less. When he tells me I am the best wife ever it confirms I am doing the best I can with what I have.

I hope in reading this is helps you define what love is to you and I hope it makes your relationship(s) stronger in the process no matter what obstacles life has thrown your way.

May God Bless Your Day!!


Thursday, September 15, 2011

The Incredible Shrinking........Life?

Over all the years that I have not felt well I would always just kept pushing myself on and on. I would just do all that had to be done with no regard or thought that taking care of myself may help me feel better. Besides I had a family to take care of how in the world could I ever find the time to take care of myself? Well, that was until five years ago when the illness struck hard, hard enough to knock the wind out of my sails. When I was really sick and couldn't move much it was ok that I was unable do anything. The most I could accomplish back then was either hoping I would die or hoping that the next day I would wake up feeling better. Finally, after many meds and a year of regulating them to a dose that restored me back somewhat of a life it all started to sink in. Life had to change for me. I had no choice. Believe me I fought it and I fought it hard. I am stubborn as hell and there is no way I was going to have to give up the things I loved doing. I tried as hard as I could to go back to the way things were but it just wasn't working. Every time I would do something I would pay and pay dearly. Then, over time I began to realize maybe I really was never going to be able to go back to the person I was. I had to start dealing with the "new" me.

Think of life, yours or mine, as a large hot air balloon. Inside that balloon are all the things that make up the person you are. All the things you love to do, of course this balloon is different for everyone. My balloon was filled with so many things. I loved to garden, cook, clean, help others, go to the Hospice House and cut hair for the patients there, get together with my friends for coffee or lunch, have parties at our house, along with many other little hobbies. Sadly, I had to give a lot of this up when I got very sick. I fought the idea that I would never get back to my old life for many years. I cried,  I became very depressed at times especially when I would look out the window and see our yard or have to watch Rich doing it all after a long hard day at work. It was like I lost some of my best friends and I had to learn how to live without them. I know it sounds silly but you can never imagine this until it happens to you.

Finally in the past year I have come to term with my new life. Now my hot air balloon looks somewhat like one of those rubber bouncy balls you get out of the gumball machines. My hot air balloon has deflated into something very small but none the less I still have a ball. I sit now and make cards to send to others who need some encouragement. Or I find happiness in others joy. Listening to others talk of their lives brings me joy, as crazy as that sounds. I find happiness in my grandchildren on the days I watch them. The times I tell them Nana is tired and has to rest and I lay on the floor all sprawled out while they kiss and jump on me. The simple pleasures or even the nuisances for some are a joy for me, they are my life now! Material things mean nothing to me. Really! I don't care about stuff anymore. Not that I don't like things that make life easier for me or entertain me but I have no big wants in life besides love and joy. It is hard to explain this.

I have lost so much because of my illness, even friends. It is hard to be friends with a sick person who can never go out and has to cancel a lot. Many people just can't handle that and only want you to get better. I am not complaining I totally understand. You find the people who can handle it and you treasure their love and support. I still do have a few of those and I love them more than words can say!

On the other hand I have gained so much more than I ever thought possible five years ago. I have gained an amazing unexplainable, understanding love of my family. The joy of just sitting with them and being. My favorite moments. I have always known how much Rich has been in love with me but illness has brought out more love in that man than I could ever write about. To watch someone sacrifice so much for another human being is the best part of being sick for me. Our love is so much stronger than it has ever been. I use to take our time together somewhat for granted, now I can't get enough of it. Any chance I get to touch, be alone, or be close to him makes me a better person and helps me feel secure through all of this. I really don't know if I could do what he does, but then you never know what you can handle until you are faced with something like this. I thank God everyday for him and his unselfish love.

It is my hope in writing this to help others understand that sick people are really just people. Just because we are sick doesn't mean we are still not people. We need other people to love and accept us just like healthy people do. We still want the perfect life but must make adjustments to live our lives, just like everyone else except we have limits.

Now let me see. I think my little rubber ball is calling me so I must go and try to accomplish something today.

God Bless You All!


Wednesday, September 14, 2011

On The Mend

I must say after a crazy busy weekend I am finally starting to feel better this morning, as far as the fatigue goes. Of course this is wonderful especially because today is the day I inject myself with poison to keep my arthritis symptoms at bay. Don't get me wrong I am thankful for my meds but for the next twenty-four hours I will get a headache, feel puckie, and very tired. Plus, on top of that I have to have a crown so I will be sitting in a dentist chair for an hour and a half. To many that is no big deal but for me not to move for an hour and a half can be very painful, but I will get through it! The best part, because of my shot, is that by Friday I will, hopefully, start to feel better for the weekend. I sure do hope so because this plan did not work the past week. I have been swollen and sore all week. Of course the week after I saw my Rheumatologist I get hit with a  flare, they never hit when I actually see her. I was feeling great the six weeks before my appointment. Then WHAM like a bus hitting a brick wall, it all starts up again. It sure isn't easy but I am hopeful that this will turn around, and I know it will, it is just a matter of when. Tomorrow? Next week? Next month? Who knows? But I keep the hope while trying to keep my head held high and my emotions at bay.
I woke up this morning very weepy for some reason. What I like to call being a cry baby. I knew the pain was still there so of course all I wanted to do was cry. But then I sat at the computer, went on my facebook, and started reading the inspiration I find there everyday. The great quotes of hope that I read. The posts of my friends who are struggling much more than I right now and it pulls me out of the cry baby, feel sorry for myself, stage.  I can't thank all of my facebook friends enough for all times you have brought me out of the valley of self pity. I love you all!

Well, thats all for today. Now, onward we go!

God Bless!!


Tuesday, September 13, 2011

Defining Fatigue

When I read the title of this post, Defining Fatigue, I think to myself how in the world can I define fatigue as a chronically ill person? Seriously?

To the ordinary person fatigue is when they have to wake up early, go to work for the day, run to the store, come home made dinner, do some laundry and/or other house work then you became tired and go to bed only to have to wake up the next day and do the same thing over again. Or maybe it is a sense that you have done to much and just need to rest, sit down somewhere in the day and close their eyes and take a quick cat nap so you are able to finish the day and all the things on your list. Doing all the things on your list but never having to think about your body keeping up with that list. Your body does what your mind tells you to do and not the other way around.

To me fatigue looks very different. Sure, I wake up with the same list in my head or on paper because I can't seem to remember anything these days. The night before I may think to myself, OK self, tomorrow you are going to clean the floors, do the laundry, dust, cook something, blah, blah, blah. Then I get up in the morning and I hear, self, maybe you are just going to do a load of wash and the floors can wait. Maybe we will just have tomato sandwiches for dinner today because there is no way I can make anything else, it takes too much energy. Then there are the thoughts of, I really want to get a job. Even if it is just a few hours a day somewhere, the self says, get real you can't even do two or three things on your list how are you going to get a job? I could go on and on but hopefully you get the picture.

So how do I, as a chronically ill person, explain my fatigued compared to someone else? Fatigue to me is in control, a monster that runs my life. I hate this monster. Imagine being the most tired you have ever been, now times that by ten, the only thing is you can't sleep to make the monster go away. I don't want to sleep because I am not tired in that way, I am fatigued. My muscles are tired and they don't want to listen to my mind they just want to be lazy. Think of the laziest you have ever felt and live with it every minute of every day. Imagine that lazy, tired, fatigue, it  not only messes with your body but it messes with your head too. It is very hard work being fatigued/weak all the time. My body is constantly sending messages to my brain to either stop doing what I am doing or just don't do it at all. If my arms are weak my mind it being told every second, don't do anything! I realized when I was at the Michigan vs Notre Dame game that I was weak and a true indicator for me is my right eye. When I get weak and fatigued my right eye droops. If I do too much or get hot or whatever I can feel that eye just fall down. When I look at the pictures from that day I can see what kind of day it was. No one else would have a clue by looking at me. I look great, as I hear all the time. I think, if you only knew. I was tired. my hip, ankle, fingers ache, I am weak, and was wondering the whole day how I was ever going to make it through this. I did! Somehow someway but I did!

It is hard to watch others live a life you want to live, but can't. Then when you do decide to take the plunge and have a day like everyone else it takes all your energy to pretend you are fine and the whole next week to recover. Seriously! Twelve hours of sleep for a few nights and just sitting around more than usual during the day because you are so physically tired. But sometimes you just have to do it and be normal. I was normal Saturday and now I am paying for it, certainly it WAS all worth it! I was able to spend the day with the people I love and that always makes the recovery worth it!

So the next time you are fatigued think about it and realize it could be so much worse than it really is. Of course all of my chronically ill friends know just what this post means. They live it everyday just as I do.

May God Bless You All!!


Thursday, September 8, 2011

How Come I Can't Let Go Of This Stress?

I know I wrote a few days ago about stress but for some reason I just can't let it go. After this past weekend my stress level was upgraded to a boiling point of no return. I thought I was doing well, after the crying and feeling sorry for myself, but I'm not and I just angrier by the day. Really angry. You know the kind? The kind where you just want to rip someone's head off, not literally, but if I could just say what I want to say to certain people it would help me so. I can't, and that is what makes it so hard for me. I hate holding things in and when I do talk about them no one understand, really understands, or they just say enough or no more and don't want to talk. Putting the blinders on that they have lived with forever. I have always been a talker. I don't believe in shoving things under the rug it is a waste of time and energy. Get it out, get it over with and move on. A true female. I need, must, have to talk things out or I go crazy, kind of like I am going right now. Bonkers!

I know some people can do other things to relieve their stress, exercise, talk and have people listen, drink, etc, but for me those are not great options. The exercise makes me weak and the drinks kill my liver because of the drugs I am on, which is probably a good thing because I would have become an alcoholic by now with some of the crap I have had to deal with over the years.

So what do I do? I come here and write some of my frustrations. Of course I am unable to write just what is going on to protect the innocent but none the less I write about the stress of it all. How I have been weaker than usual, how the brutal fatigue is killing me, how my eye is dropping almost shut at times, how I feel like I want to throw up, how my pain and swelling have been worse, how I wish I had a delete button in my life to delete certain people, how I haven't been sleeping as well which in turns sends me on the down slide into autoimmune hell. I could go on but I am sure you get the picture. Stress is no good for me or anyone with autoimmune disease!

As for now I will continue to try to deal with all my symptoms and deal with my frustration as I always do in this situation, alone. This too shall pass, and it will, until the next pile of crap hits and adds up to get me sicker. Actually I think I should be use to it all by now but for some reason I'm not.

I must focus on the good. The good of my family, especially my grand babies who love and accept me, flaws and all. Who are always there to give me the hugs and the kisses I don't deserve at times like this when the horrible thoughts are running through my head. They don't know and they don't care, they just love me. The only thing I need right now, love! I thank God for them everyday!

I think I feel better after writing this. It doesn't make the situation go away or pass but it does help me mentally. And if you know me, well, enough said there.

Blessings to you and your day!


Tuesday, September 6, 2011

The Good The Bad The Ugly of Stress

I hear so many people talk about stress these days. How everyone has so much stress in life. Stress at work. How relationships cause stress. How everyone is so busy they are stressed to the max. Makes me wonder what do we do about stress? People recognize they are stressed but then they do nothing to try to keep their stress levels under control. I watch people work themselves to death, never stay home, never sit still and just be and then complain because they are so tired and stressed.  Makes me wonder...

As for me, I know when you don't work, let me rephrase that, can't work, you look at stress from a whole other perspective.
Stress for the chronically ill is so much different than stress for the healthy person. Stress for me and others like me is a stress that looks like this, waking up in the morning having to remember all the pills I need to pop to get myself going. When I get up I need a few hours to just sit and let my body adjust to being up and for the pills to get into my system so I can try to accomplish a few things for the day.
Then there is the stress of the being alone all day. You become your own best friend in many ways. I often find myself talking out loud to myself or all of the sudden out of the blue laughing out loud at something that just crossed my mind. The stress of trying to keep my house clean and only being able to do a few things a day. The stress of having to cook dinner. The stress of, oh no we have to go away tonight I will never have enough energy to do that. Those kinds of things that others take so for granted.

Then there are the times of stress that have to do with certain people who are like poison to your body. Things that happen that set my stress level through the roof. Believe me I do not allow people like this into my life but some are  unavoidable. For times like this I have a journal that I call  my bitch journal. When I get really stressed I must let that stress out somehow and I do it through the bitch journal. It helps to some degree but there are other ways that would help much more which are not an option. I tend to be a person who will just say it like it is to people while my husband does not always agree with this way so I must be a  good little girl at times when I really do not want to be. For him I do out of the love I have for him. We will just leave it at that. Hopefully no one is ever able to read my bitch journal because when I get going in it I wonder who that person is who is writing in it. Which reminds me I must show my girls this journal so they can burn it when I die, or they can sit together and read it and laugh. One of the two.

Stress for me has an all together different outcome than it does for healthy people. For me, stress may cause me to get weak, have more pain, cause extreme fatigue, etc. It exasperates the symptoms I do not need to deal with. Stress for me is like putting gasoline on a fire. A fire I deal with enough so I just try to avoid throwing gasoline on it at all costs.

So in my title I wrote the good of stress. I truly do believe there is good out of stress too. If you are true to yourself and your health you come to realize the good of stress. Stress for me, especially over the past year, has taught me who, and what I will allow in my life. I have decided over the past year to delete the bad, the poison, the crap in my life and this does include people. Sad to say, and write, but none the less the best decision I have ever made for myself. For me! Boy, I have never said that in the past because it has always been about everyone else. No more! It is so freeing to cut out the stressers and only focus on the good. Now, saying that I am not going to say I still do not have bad things go on in my life, I do, that is just a part of life. But there are certain stresses you can cut out of your life and each of us need to decide what those are for us. Everyone has that option to allow or not allow good or bad in their lives. I hope you can do the same even if you do not have health issues that are made worse by stress. But mostly for you I hope it allows you to enjoy life more and not allow others to drag you into their issues. It really is a peaceful feeling to get there!

May God Bless you as you live your life for you and make the choices that are right for you to live a more stress free life.


Sunday, September 4, 2011

Back In The Funk

I am not sure what is going on or what to make of it. I just like to call it the Funk.Yesterday I woke up feeling good, went to get my hair cut and had a wonderful time with two beautiful souls. As I was sitting in the chair I could feel something was happening to my body. I could feel my eye drooping and usually when that happens it means that good things are not on the horizon for me. I left the appointment feeling ok and was excited to go shopping and get a few things along with a few other stops. I made it to the first stop, Kohl's to return something, which in itself does not seem like a major event, but to me it was. You see, I had to stand in line and wait for quite a while, which is not that big of a deal for some but for me it is like climbing a mountain. The standing and not being able to lean on something to help me hold myself up takes so much energy. Finally, I made it to the counter and made my return. Initially I was going to look around but decided after the wait I would just leave so I could make the other stops I really wanted to make.

Next, the beauty supply store. Nikki my hairdresser told me about some better shampoo I should be using for my rats nest hair. I ran in to pick up a bottle of shampoo and conditioner. The lady was rude to say the least, really do I look like a dummy or what?! I was the only customer and she acted like I was a nut. I asked, "Do you have bed head products?" She answered, "Yes on the back wall." So I went back and started to look at the products. She finally decided to ask me if I needed help. Yes I do! For one thing I can't see to read the bottles so that would be helpful and I have no idea what I need for my hair. As she approached me and I said I needed something for the friz she looked at me like I was crazy and said, "Well, I am not sure what you mean." I am standing there thinking, are you kidding me right now? Frizzzz dah, you do work in a beauty supply store and why the heck did you ask if I needed help then, of course I just smiled. I know this sound rude but for me the energy it takes to even converse with someone is more than anyone could even imagine. I told her to forget it and I would look myself. Geeze! I finally found what I wanted and checked out. Only to get home an realize she never kept my signed receipt for the purchase so I called her back to tell her the drawer would be off and she was very nice then, of course it was her butt on the line then. I thought maybe now she will treat others kindly as I just did her by telling her she made a mistake. I do believe in karma! I hope she is kinder to others in the future!

Next stop, Hobby Lobby. I love this store to say the least although I knew I wasn't going to last long. I wanted to get some more craft items so when I feel like this I have something to do when I have to just sit on the couch. Needless to say I didn't find much. My main goal today was to get some airplanes for Hunter and Addi to play with when we have out cookout this weekend. Mission accomplished and that was about it.

I also had good intention to go to Meijer for a few things, I didn't make it. I came home and sat on the couch, weak, tired, and very sad. It is so hard when you are stuck home alone, not feeling well, while everyone else is out having fun in one way or another. It can be very depressing if I allow my mind to travel down that road of thoughts. We all have those thoughts at one time or another. poor me, poor me, poor me, but when you are chronically ill they enter your mind much more. I sat and watched the Michigan game as those thoughts tried to flood my head every few minutes. Every time telling myself  you will not give into that crap. It wasn't easy at all but somehow I made it through the day, alone. I still am not feeling well physically today but am looking forward to having my family around to make me laugh today.

The past month has been wonderful for me health wise and I am grateful for that month, as I sit here and wonder if this next month is not going to be so good the way it is starting out. That is how it is with chronic illness, at least for me. I can be really good, good for me, and it is like a light switch that just turns me from bad to good or good to bad in a second. I don't understand it and to be truthful I don't want to understand it. It is so emotionally draining trying to figure it all out I just try not to go there in my mind. I have played that game for over five years now and I never win so it is just easier to let he disease win. When I feel good my mind controls my life, a somewhat normal existence, but when I am bad my body controls my life and that is ok. I will get through this as I have many times before! For now the body wins and the mind listens.

May God Bless You All. I know he sure does me!!


Friday, September 2, 2011

Think Making Cookie Bars Is A Piece Of Cake? Think Again!

Tomorrow Rich is going to the U of M game with some friends, Steph, and Vinnie. They are meeting Richie, Leah and many other friends there so of course my mind goes right into mother overdrive. "Well, what are you going to eat? "What can I make?" You must understand, when it comes to food in this house we all take it every serious. Okay, lie, I take it very serious, most them are happy with whatever happens to be there, but I love to blame others for my short comings. Food is one of my greatest joys!

I sent Leah a text because I know she is a chocolate junkie, like me, and asked if she wanted some chocolate chip bars. Oh yummy! YES! Man, I love that girl already and she doesn't even have our last name yet. Soon I hope. Anyways, not to get side tracked here, this morning when I got up I decided to get some of the stuff out, the mixer, butter, and some other ingredients because we had to go the funeral home for my Aunt. I thought if I get all the stuff out it will just be all the easier when I got home to whip them up. By the way, I had my chauffeur, AKA Rich, drive me to the funeral home because for one, he thought I would get lost and knows how bad my eyes get when I drive, and secondly if I would have driven all the way to Hesperia and back by myself we both knew there would be no cookies for the tailgating party.  Of course neither one of us said this out loud but we were both thinking it none the less. Funny how you can read each others minds after so many years.

When I got home I started to put the wet ingredients into the bowl and got the hand mixer all set up and ready to go. I mixed. The recipe calls for you to mix this goop for five minutes, for me that means two, tops! As I was mixing the searing pain that shot through my wrist was excruciating, it was so bad I had to stop. It was the kind of pain that brought tears to my eyes. Ever have pain like that before? It is no fun. I stopped for a few minutes and composed myself, holding my wrist in pain hoping that holding it might calm the pain. I wanted to cry my eyes out because I was so frustrated. when things like this happen it sends my mind to another place. All the "how come" questions flood my mind, but I stopped myself, and thought of the smiles on the faces of the ones I love when they bite into these little chocolate chip beauties, no tears! I proceeded to add the flour and mix again, which I will say went much better than the first round. I happily sprayed my pan, patted the batter into it, and baked them to a beautiful golden brown. I have to admit they could almost be put in a magazine that is how beautiful they are.
Five years ago I would never have said that my cookie bars were beautiful enough to be put in a magazine but now I have a deeper appreciation for all the little things I am able to do in life. Oh how I use to take it all for granted. As a healthy person you never realize what it takes the body to just exist. The energy it takes, how everything needs to work in harmony to get even one little deed done. All your muscles, bones, nerves, etc. One needing the other to make the other work. But I guess like everything in life we take it all for granted until we don't have it.

In conclusion I am happy I was able to accomplish this feat today. Funny part is I do have a huge mixer that can do all the work for me, but for me if I get it out and use it I feel like I am giving up another "taken for granted" exercise, using the hand held mixer. When you are chronically ill all those little things, things like a hand held mixer, are the big things now. I am sure that will make no sense to some who read this, but to others it will make perfect sense because you live as I do. Every time I have to give something up it is like I lose another part of myself. It isn't easy at all, but I will save that chapter for another time it has nothing to do with the physical side of illness but the emotional.

Thank you for reading and remember, even when things don't seems so good you are still blessed in more ways then you know, just start looking around and open your eyes!!