Friday, April 21, 2017

Is this Understandable

My reality hits me every time I change the sheets on my bed. It takes me so long to accomplish such a simple task that should be a wham bam job. In the past when I changed the sheets I would get worn out from my muscle weakness but now with the added shortness of breath the job seems even more monumental to me.
I am constantly reminded how we all take the simple things in life for granted. I imagine a healthy person my age competing with me in a bed changing contest. It always makes me laugh. The funny part is when I'm in a situation like changing the bedding my brain turns to humor, at least at some point in the job. But not before I get angry and start ranting internally. It brings back all the snarky comments asking, "How can you be home all day?" "What do you do all day?" "Oh you don't work?" All time me with an angry face ready to punch someone. By the way that is the best conversation killer of all, just tell someone you don't work and the looks and strange silence where there was conversation is hilarious. I hate to admit it but it almost brings me some odd sort of joy now when someone asks where I work or what I do and I blurt the, "Nothing," answer. Like I said that's my odd sort of humor. I don't understand why we are so wrapped up in titles. I have a title, wife, mom, grandma, daughter, friend to a select few. Proud of it too. I don't think my life is any less lived than most but its my life so...plus I need to be home for all the people who text me or call for therapy. Yup my life might be not be what everyone else thinks it should be but I get to tell everyone what I think about theirs. Who wouldn't love that? Fools. Haha
I laugh in the mornings too, at times. Those are the worst. I wake up many mornings and lay there. I mean literally lay there for a half hour, sometimes an hour, before I muster up the courage to get up. It's rough. No ones understands or see's that part of my life. Most people wonder why I don't work, I wonder why most of them wonder. Actually, I wonder how most of them can. I have no choice. It's painful to say the least. I dream of it but then am slammed with the reality that it takes me 3-4 hours to wash and change my bedding. Now add to that the rest of life, keeping up a home. If I worked all the extra money I made would go to a housekeeper, chef, finding someone to shop for me, etc. Being chronically ill sort of makes all those things your job. Oh, and along with that taking care of yourself thing which takes center stage when you are sick. Life is all about that. Sadly. Believe me you don't want it to be but you have no control over it as hard as you try it's always there.
Yes, I'm on medications that help but they don't cure. Whenever the words come out of my mouth that I am feeling better it seems I eventually get slammed back down. It's like one big circle jerk of fun let me tell you. I try to rationalize it all in my head, making my life matter like everyone's does. I sat down to write this as soon as I got done putting the fitted sheet on the bed still huffing and puffing, still chuckling to myself a little while my reality also brought tears to my eyes. Fair? Nope. But it is what it is. We all have our stuff. I think dealing with our stuff and realizing we all matter no matter how insignificant we think our life may be is the most important gift we can give ourselves.
There goes the dryer, time to get the blankets on the bed and either laugh or cry, who knows. Take it as it comes and enjoy the ride.

God Bless!

Dianne

Saturday, December 3, 2016

Things Are Spinning Out Of Control

It's been a while but I've been too busy surviving to write in my blog. The cold weather hit here and the last few weeks have been brutal. The extreme cold has affected my breathing making it hard to get around. I've felt like I can't get enough air in my lungs for a while now but when this bitter cold hit the issue only became worse. Besides the fact that the exhaustion caused by this has been unexplainable. I have been using my inhalers but I am also very stubborn when it comes to using them. It's some odd sort of game I play with myself. If I don't use my albuterol when I need it and I ignore the symptoms it's like my head thinks this will all go away. It's almost like I think I'm in control if I don't use the inhaler. I fight this all the time. I'm sure it is still the denial of the disease. How can ignoring something like not being able to breathe make it go away? When I think about it or write about it it sounds absolutely absurd. I'm no idiot I know it's there. It feels like I'm banging my head up against the wall over and over trying to deal with all of this. I saw my pulmonologist the other day and we decided to add another inhaler, which by the way doesn't sit well in my head. It's been three days since I started it and I feel like I am getting air deeper in my lungs already. My fatigue was much better the past few days but I guess getting air in yours lungs will do that? The doctor also suggested doing thirty minutes of exercise daily to strengthen my lungs which in turn will make it easier to breathe and help my lungs to work better. I'm committing myself to this in hopes that I won't need as many inhalers in the future. This new inhaler is a trial run anyways. I'm on it now to see if it helps then I will go off it to see if my symptoms return. Making the commitment to exercise daily isn't easy when your energy is at an all time low but I am truly serious about sticking to this. Instead of using my extreme fatigue as an excuse I'm going to push through it and do the exercise no matter what. If I continue to make excuses I continue to be stuck on the same path. I've been working on losing weight since July and have lost over twenty pounds. Yay for me! It isn't easy but it's possible. When I started twenty pounds seemed miles away but looking back it wasn't that bad. Once I started my cravings for junk subsided and it did get easier. I also realized even more how much of a emotional eater I am. Stressed? Eat some junk that will help. Of course it never did the stress was still there and my ass just grew a little more. I will continue on this path too. Less weight equals less pressure on the joints especially my knees, ankles, and feet. Three joint areas that have been painful and troublesome for a while now. I am having a stress test next week and after that I will start on the Humira for the joint pain hoping to lessen that. If I can get that under control along with being able to breathe better I'm hopeful my daily living will become easier and I'm sure more enjoyable. Feeling the way I have been doesn't leave me much energy to give out to others. I'm stuck in a place that is not me at all. I feel like I'm in a valley at the bottom of a very tall mountain looking up at the light on the top of the mountain. It looks like a long haul to the top but the rope with the hook are there for me to grab onto and start pulling myself back up. I started a exercise/weight journal so I can record my progress. I'm not going to beat myself up when I don't accomplish what I should. I'll do the best I can and pat myself on the back with any progress I make. Any positive changes or thoughts I have I will write down. You don't realize the changes in your daily life until you write them down and reflect back on the collection of notes you wrote. I will also keep track of any and all symptoms I experience so I can see if there are improvements or set backs over time. I will keep track of negative thoughts that might try to throw me off course and when the negatives thoughts come I'll replace them with the positives. This isn't a New Years resolution, I hate those, just a time for me to reflect on the progress or the set backs I encountere on my way to not only health improvements but self improvements. Push on my friends and let the games begin!


God Bless!

Dianne



Saturday, November 19, 2016

The Waiting Game

I've said it before and I'm not going to lie. I'm tired. The past few weeks the realization became even more real as I had to work on getting a new prescription filled. It's bad enough when being tired, not a normal persons tired, Living your simple life wears you down but adding to it with the nonsense of getting a script filled is not warmly welcomed. I am starting on a biologic medication that is very expensive. When I say expensive I'm not taking a few hundred dollars but thousands of dollars a month. First I needed to have a lab test to make sure I didn't have TB or any TB laying dormant in my system. Passed that one with flying colors. It seems that was the easiest step in all of this stressful decision. Next, insurance approval.  Oh boy here we go. Doc sent information for approval and I heard nothing. I'm not the kind to call my docs and be a pest. If there's one thing I've learned over the years it is when it comes to anything medical patience is key. The week came and went and in that time I heard from the Humira nurse who will be helping me with my injections and will help me with all the issues and answer any questions I might have through this beginning process. She suggested I call my doctor and see what is going on, so I did. They had sent in the info and said they would resend everything directly to my insurance carrier once again. I patiently waited another week and my Humira nurse said call the insurance carrier again. This time I had been approved but I had to go through a specialty pharmacy because of this specific drug. I was told to call them. The new specialty pharmacy took more information and said they had to call my insurance company to double check I was approved and then call my doctor for the actual script. Call back in a few days and we will let you know what is going on. Call back, still no answer from doc on script. This was Friday, two and a half weeks later I am still waiting. It's fine like I said I've learned to be patient. The worst part is the whole time thoughts running in and out of my head like, "Is this a sign I shouldn't be going on this drug?" "Do I really want to do this I mean really I can keep going on and off prednisone for the rest of my life when I flare." "The cost oh my gosh what is the insurance going to cover?" "Is the company really going to help pay for this like they said they are?" "We can't afford treatments like this." "I don't work to contribute so more money going out the door for medicine." On and on and on. I don't think the thoughts have stopped much since I decided to try this new drug. On the flip side I'm trying to keep the voice of my doctor telling me this will be it, the treatment that will make it better, with that I think it will be worth it. I'm pretty sure to most people all of this is not a big deal. It's hard to express how it is when it takes every ounce of energy you have to survive on a daily basis. I don't want to deal with this. Illness is a full time job in itself and dealing with simple little things like this wear on you physically and emotionally. I'm pretty sure this all contributes to the, "I don't care," attitude I've been dealing with lately. I constantly have the inner battle going on between giving up and fighting tooth and nail. When I look around me, in the end, I realize giving up is not an option. Fight I will. I might be tired but I'm not dead. I'm here for a reason even on the days I can't figure out why, which is most. When I think I can't do it anymore I realize I can. Life is different for me now. I've learned how to take it for what it is, at least right now.  A bad day means I'm laying low and a good day means I'm doing way more than I should all the while knowing I'll pay for it later. I realize now it's all up to me. Even though have support this is my illness and no one else's. I'm the one whose understands it to the best of my ability. It's all in my decisions. I'll keep fighting While I'm waiting.

God Bless!

Dianne

Wednesday, November 9, 2016

The Lie of Strength

I read this the other day and it resignated with my heart:
"We tell people they are strong when we are uncomfortable with their pain and would prefer that they would shut up and not bother us with it. To say, "but you are strong" is telling someone, "I don't think you should feel that way," and it's not a compliment. I don't think that strength means being invulnerable, or pretending that you are. The belief that silence and stoicism are inherently good qualities is how you end up dressed like a bat punching criminals in an alley - it's not a good road to emotional health.
I think your father has handed you a raw deal and that caused you and your family grief and pain and distress, and all of that stuff is real. You don't owe it to your friends to be the "strong" one. Just because you have always been the good listener and the shoulder to cry on, doesn't mean you have to maintain that role when you need a good listener or a shoulder to cry on.
Be sad. Be angry. Let your heart break - in the diner, on someone's futon, in the park, on the way to the zoo, at brunch, over drinks, in the therapists office, on the bus - wherever it breaks, let it break all the way open, let it run out and down and spread out in a soggy puddle at your feet. Say, I'm sorry, I can't listen to you today, my heart is broken. Will you sit with me a while and I'll tell you about it?"
Your friends may get scared when you do this. If you, the "strong" one can break, what does that say about them? That's why they push back at you and try to remind you and try to remind you of your strength, when what you need is for them to stand by you in your pain and weakness. They don't have to solve that pain,  gthey just have to bear witness to it. Maybe they don't know how - a lot of people don't  know what to do in the face of other people's pain. They want to fix everything, and if they can't fix it they feel inadequate. As the "strong" one you can help them out with this by saying, You don't have to fix it. You don't have to do anything. Just be with me, just listen, and love me, and I'll love you back. That's all I need - to know that you love me, even when sad and scared and don't know  what to do next."
To ask for help is strength.
To admit you don't know is strength.

To tell the truth about what's happening is strength.
To be imperfect and to trust that imperfect people will love you despite imperfections (albeit imperfectly) is strength.
To let people you love see how you really feel  - without trying to hide or stage manage their perception of you - is strength." - from The Lie of Strength.

Wow that sure is a mouthful. I have read this over and over and still struggle with it. I've always been the one there for everyone which in turn has made it extremely hard for me to let people in. I know I am open on my blog but I am complete opposite in real life. I wish I could change this and I am working on it but it isn't easy. It takes a lot of strength for me to write that. Where does strength come from? I wonder about that a lot. I don't have the answer most of the time but for some reason I do have the strength to go on and try to live a somewhat normal life given all the opsticlcles.
There are those who find strength from God or strength in other people or...insert where you find strength here______.  This question can be answered differently by everyone especially those who deal with chronic illness.
I truly believe that my strength comes from a combination of all. God and people for sure but when I really think about it, it is up to me. After all these years I have come to realize it has to be me. I can and do rely on God and people but I am the one who knows how this feels. I'm the one who knows what it's like to get up and force myself to get moving on the days I really don't want to. I'm the one who knows how it is to keep my head directed in the right direction when I want to bury it in the sand. I'm the one in all the suffering who must choose to get up every morning and give the little extra bits of myself to others. Those are the little bits that bring me hope.

The next step in my journey is starting a biologic for my arthritis. Over the past week I have looked back more than I care to and wonder how I got here. I have failed on medications either because the side effects were horrendous or the fact that the treatment didn't help. I'm am nervous and anxious about starting this new and very expensive drug. The what ifs are playing over and over in my head like moments in my life I wish I could delete. On the other hand I am hopeful on starting a drug that according to my Rheumetologist will help get me over the edge and move me to much less pain. I am hoping the side effects don't affect to me. Strength. I need it all the time but especially now. Hanging onto hope as always, are you?

God Bless!

Dianne

Tuesday, November 1, 2016

I Don't Care

 
I haven't been on my blog for quite some time now. I didn't realize how long its actually been until I decided I needed to write this morning and signed into my site. I have wanted to come here on many days over the past few months but the, 'I don't really care,' mode is in full swing for me right now. I feel like I don't care about much except the things that I absolutely have to care about and the few things I want to care about. Thinking about the reasons why I don't care has somewhat consumed my train of thought many times over the past month or so. I think I finally came to the conclusion that it is the fact that ever since I was given the asthma/copd diagnosis a year ago I am unable to accept it. I mean really, it took me like ten years to finally accept the sjogrens/arthritis and then it was like wham, if you think you accepted that well here's this bitch. I was angry at first, now it's just there hanging around waiting for me to learn to accept that diagnosis. I think I'm still mad but when I think about it it's the I don't care. I'm so tired. Exhausted to be completely truthful. I know we all are exhausted but this is a different exhausted. My exhaustion is some sort of odd survival that is hard to write about. Confused? Maybe. Ready to give up? Maybe, so unlike me. Alone? Most certainly. I'm still living life on the sidelines in which my realization is that this IS forever. It's mind boggling to say the least. How do you explain something that doesn't make any sense at all? Does anyone know? I know we all struggle in so many different ways and how we handle our struggles are personal. Do we let people in or is it easier to hold our personal struggles close to our own heart. It seems so much easier these days to hold it in because, at least to me, the real world is so busy. Who wants to hear about the sick struggling girl who doesn't have the energy to care anymore? No one I'm sure. When you are ill you look around for support groups and maybe have tried one or two only to learn that most the people who go to those are looking to latch on to someone who can listen to their problems and make them better. I always thought of a support group should be like a friendship, the give and take side. You talk and I'll listen but then when I want or need to talk you listen to me and don't turn it around on you again. We can never learn from ourselves if we aren't given the time to absorb what just came out of our mouths. Support groups are not the answer for me. I think it would be easier knowing I'm not alone in my world where I have never felt more alone in my entire life. I don't know the answer but I'll keep working on it and keep the hope close by my side. I will get an answer and pull myself out of this pit I'm sure.
Today I have yet another doctors appointment. Yay, can't wait. OLD, it gets real old real fast. Today is rheumetologist day. I really like him so its not him, it's me. We have been trying a few new medications for the arthritis that is keeping me up at night in hopes of finding one that works. The last two caused severe shortness of breath which I continue to struggle with so today I'm not sure what is going to happen and guess what? I don't care. No surprise there. I am hoping this funk is from the steroids I just tapered off of and I feel better soon. Life will go on whether I, we or you care or not, that's a certainty.
I look back on life and realize it changes constantly but I think it changes even more when you are chronically ill. A never ending roller coaster ride. The important thing is trying to stay grounded while you feel you are being tossed around and around. It's all an inside job that changes who you are to the core. You learn things about yourself you never would have learn if you hadn't become ill. Its all in the fight and holding on to the goodness that surrounds you even when you don't care.

God Bless!

Dianne

Monday, September 12, 2016

What Do You Do All Day

I don't usually let anyone's comments or opinions bother me but there is one I hear over and over in my head because a certain person use to love to say it to me. It had to do with me not working outside the home. As I have aged I realize it had nothing to do with me not working but all to do with the persons insecurities because they had to work. At the time if I thought about it too much it would get to me. I would get more angry about the fact that someone else had the nerve to make comments about how I chose to live my life. I did work early on in our marriage until Richie was in kindergarten then decided I needed to be there for my kids. Best decision I ever made I might add. I wouldn't change those years for all the money in the world. I always had a plan in the back of my head that someday I'd go back to work when Richie graduated. When the kids became self sufficient enough with all I tried to teach them through the years. The years flew by, even the days I worried if I was being a good parent or doing the right thing, there and gone. As a parent it is a constant battle in your head if you are doing good for your child future or making wrong decisions on so many levels. I look back and realize and know for sure I did something right. No job would have ever given me the satisfaction and proud feeling I carry with me everyday. My middle daughter has a tattoo that says, No Regrets. I agree! Isn't that what life is about anyways? Doing what is right for you and not allowing anyone to sabotage that.

Here I sit eight years after Richie graduated and as I look back at my so called plan I realize the dream of going back to work didn't become a reality. My health decided it was going to take center stage and decided for me work was a pipe dream. Don't get me wrong the dream still exist but not at this present time. Hope. The reason I thought about this, as I have a few times before, is because I spent the morning sweeping and mopping my floors. Upstairs which is only 1200 square feet minus furniture, not huge that's for sure. It took me 21/2 hours. Seriously? Yes. I'm pretty sure I use to clean my whole house, wash my car, chase after kids, do laundry run moms taxi service, push the homework, and make dinner all in the same day, and then some. Today I cleaned the floor and I'm done. Being ill takes all the energy you can find just to do the simple things in life. In my head I want to do more but the body has nothing left. How do you explain that? It isn't easy. While I continued mopping I thought to myself, "You are doing it and that is all that matters." Instead of putting myself down about what I can't do I get a huge feeling of accomplishment by mopping my floors. I know others think of it as no big deal and you know what? I don't care what people think. Whatever. Staying positive and doing what is right for me and my health helps me put my tiny life in perspective, even though I'm not living now as I thought I would be so many years ago. Plans change and we adjust. We learn to make due with what we are given. It's a gift no matter what your circumstances are. I watch so many take life and many times people for granted and I wonder about that sometimes. When you become ill you take nothing for granted. You are so finely tuned into every aspect of life it's almost impossible to do so. In that I will end and say, "I mopped my floors today WooHoo! What did you do? " Pat yourself on the back for the little things. You deserve it!

God Bless

Dianne

Sunday, August 28, 2016

Say It Isn't So

Last night I had a dream, well actually it was more like a nightmare. It started out as this whole summer has, hot and humid and pure hell, but ended better, at least for a minute.

I woke up this morning and it was so hot that the windows had dew on them. I could barely see outside. I instantly knew the humidity was high. Although I already knew it was high because this has been the case all summer long this year. I honestly didn't need to get out of bed to know it was humid because my breathing was already labored. Humidity and breathing problems do not mix well together. This summer has been murder for me and I'm sure others who suffer from lung disease. I feel like I have been stuck in the house for months because every time I try to go outside I can't breath. It's exhausting to say the least. I have to keep the air conditioning on sixty eight just to feel comfortable and able to get the air in my lungs that I need. This along with my inhalers to relieve the symptoms. Everyday I try not to use my rescue inhaler I feel like I'm grasping for air and there's a vice squeezing inside my chest, it is the worst feeling in the world not being able to breathe.

Turning back to my dream. I went to bed with the humidity still circulating through the house but oddly I woke up in the morning to winter. When I got out of bed and looked outside the next day there was snow on the ground. I was never so happy in all my life. I didn't have to use my inhaler which made me even happier, finally the relief I have been waiting for. I enjoyed the day and remember running to Rich when he woke up and saying, "Hon, look outside finally some cold weather!" Of course he was happy for me too. We had a good day and for some reason it was a Sunday just like today. The day was good and flew by. Time for bed again. I remember sleeping well but waking up in the morning and having problems breathing again. I got up and guess what? Windows steamed up and hot and humid with no more snow. Rich watched the weather and told me winter only lasted one day this year. I was devastated to say the least. I cried and said rather loudly, "SAY IT ISNT SO," in between the sobs. I told him to shot me and take me out of this misery. I can't do it anymore. That's all I can remember because that was when I woke up. 

The only meaning to this dream that I can think of is that I can't wait for cooler weather. While everyone else is out enjoying the summer I feel trapped. I watch my grandkids and can't go outside with them unless I'm in the shade and even then it is extremely hard. How do you explain illness to kids? I don't. I never let them, or anyone else for that matter, know how rough this is. Most everyone doesn't understand anyways or they just want to fix what can't be fixed. I do the best I can but its not easy. Then for the last three or more months I started losing my voice like a laringitis type thing. Talking has become very hard along with the shotrtness of breath and the coughing. I told my pulmonologist but he never gave me an answer so once again as usual I had to do my own research. I knew something wasn't right. A person knows even when the doctors don't want to listen. I came across information about the steroid inhalers causing thrush which is a yeast infection in your mouth. I looked at the back of my throat and sure enough I had it. I've had it before from prednisone but this time I knew the inhalers are causing it. I sent the doc another message and now I am being treated for that. It never ends. I wonder now is this something I'm going to have to deal with forever? I need my inhalers because breathing is sort of important so stopping those is not an option. Say it isn't so. I don't need another thing to deal with right now or anymore for that matter. I'm going to try to keep an open mind and believe this is a one time thing. 

I wish this whole nightmare would end. I wish it was just a dream and I would wake up and life could be normal. My normal will never be a normal, normal. Yes, I know we all have issues and I know we all suffer but my cup is full. I'm tired. I'm tired of always having to have such a heightened sense of awareness as to all that goes on in my body. This year has been rough to say the least. The worst part is when, one more thing happens, it tends to bring me down. Just when I think I'm doing good and can handle this hell another thing hits. "Say it isn't so," is usually my first reaction but then I must bring my head around and believe this too shall pass. I must live in this moment and not worry about what comes next. I'm trying. What more can I do? Life goes on whether it is a normal life or whatever this is. 

God Bless!

Dianne