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!
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.
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?
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.
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!
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.
You know how it is when you know something is coming even if it isn't going to happen for a matter of time? We all have those times in our lives. Getting engaged. Excitement and nerves all preparing for the big day. There's so much to do but you continue on with life in the days leading up to the actual day. Another perfect example is having a baby. All the excitement aside, somewhere in the back of your mind is the thought of the actual birth. The pain, and if it's your first baby, the dreaded pain and horror stories you hear from people who feel the need to tell you about their awful birth experience. You hear the story or stories and you become horrified at the fact that you are going to have to go through...that? Even though you are freaked out you push the thought of the birth to the back of your mind and continue to deal with the day to day living and preparations of having a baby. These examples could go on and on.
There are so many times a person with chronic illness faces these same issues. I have had one thought in my head like this ever since I became sick so long ago. A cure. You know, the thought that's always there that one day I wake up and it's all gone. No more illness and in an instant my life flips back to some sort of health normalcy. Honestly I can say I never felt well even as a child but at least I was better than this. I always felt tired and like I could never keep up with the other kids. Always the last one picked and absolutely hated anything physical in school, now years later it all makes sense. It's no different now and worse the biggest change is I didn't have the pain way back then like I do now. The thought in the back of my head, "If I could only go back to that." I'd be happy with those days and even just a little pain to be truthful. Life doesn't work like that though. We can't pick and choose the future and it's a fact we can never go back, so we push on.
It has been quite a few months now that my inflammation has been giving me more problems. Feet, knee, back to name a few, the list can go on. This isn't the normal everyday pain I deal with it is the joints and the arthritis getting worse for some reason. My Rheumetologist and I have been discussing adding another DMARD, disease modifying antirheumtic drug, used for autoimmune arthritis, for quite a few months now. These are powerful drugs that calm down the immune system to keep it from attacking the joints. I am currently taking one but yesterday I saw him and with all the swollen joints we decided now is the time to add the new one we've been trying to put off. The wait and see approach isn't working as well as we hoped it would. The funny part is when I saw him about 3-4 months ago I was doing quite well without signs of inflammation. We were both encouraged until a month later when my knee wacked out on me. Then it seemed from there it was the balloon effect. One swollen joint lead to another and so forth. I had a couple of good weeks for me and then wham the past ten days things turned for the worst. Honestly I was glad, not glad because things got worse, glad because they were at their worse when I had an appointment. That is the crazy part of having an inflammatory disease. You can go see your Rheumetologist and be doing well and the next day or a week later something happens inside your body to set you off. I was glad this flare was in full swing when I saw him yesterday. As I have said many times before, you rack your brain trying to figure out what caused it. "What did I do different to bring on this change?" I can never find a clear cut answer to that question, ever. It just happens. I guess when your immune system hates you it takes charge whenever it wants to. I picture it sneering and chuckling and asking, "I wonder if she can handle this?" Well, guess what? "Yup I can so bring it on bitch!" My fight on the inside has become stronger than I ever thought possible even when I have to make decisions to add medications to help me live a somewhat normal life. Honestly I just don't care anymore. I care but in a different way. I use to make myself crazy arguing with this disease and taking the drugs but now it seems I am beginning to come to some sort of peace with it. Learning to take what it throws at me in stride. I truly believe it helps me 100% having a Rheumetologist that is on my side too. I just love him and it brings such a peace to me to have him. We also added a prescription NASAID. I took it years ago but we decided it was time to go back on that too so I am happy for that as I remember the relief I had from it. Worth the risks I guess. I just can't think about that side of it. For me I would rather live a life of less pain and less misery and take my chances. We all have to make that choice on our own.
I was thinking about all of this and the pull I feel about taking another drug, actually two, and it is odd this time how I feel ok about it. I use to get so upset about the drugs and in turn would almost get depressed about them but I have come to realize they are there to help me. Racking my brain I finally have that peace too that for me I would rather live with less pain and misery and take my chances with the drugs. We all have to make that choice for ourselves. I also know that having my son as my own personal pharmacist helps immensely. He has been such a help for me through all of us.
I was pondering on the new addition of drugs and, as usual, I had to put my twisted humor in there. Humor heals all you know, at least for me. I have some odd internal dialog with my disease today and on most days but today it was short and sweet and went like this:
Dear Inflammation, If you could only hit one joint at a time that'd be great. Sincerely, Dianne
Dear Dianne, I don't work that way so buck it up. Irritatingly yours, Inflammation
Yup that about sums it up in a nutshell. I have the hope these two new drugs help with the pain and since I have had the time to proces this change because I knew it was coming it makes it that much easier. Push on my friends!
Think about these three simple words for a minute, two way street. What comes to mind? I'm sure if we were sitting as a group in a quiet room and we were asked to ponder on these simple words we would all come up with our own definition as to what they might mean to us.
Life in general is a two way street. We are born and throughout life we are faced with so many choices, most of them good, some not so good. I'm sure we could all list many good and bad streets we have traveled down over the years. We love to remember the good ones but somewhere along the way we tend to forget about the bad ones. Human nature has a funny way of doing that to us without us even realizing it. It's easy to block out the crappy streets we landed on compared to the joyful ones. I'm sure we have all said once or many times, "If I could go back I never would have done that." I know I have. I always wonder though, would I really? Lessons learned and roads traveled teach us a lot and give us wisdom, so maybe not.
Relationships are a two way street. Relationships along the way that I thought were beneficial to my life when actually they weren't at all. The problem was I never realized it way back when. I believe if we never had certain relationships we would not be who we are today so it all happened for a reason, right? Then there are the relationships that slipped through our hands when maybe we wanted a relationship and the other person didn't or vice versa. Once again you realize the older you get that if those worked out our lives wouldn't have aligned as it did. We all wonder how different life would have been if... The other day I was talking with someone who brought up a what if like that and I immediately thought to myself, if that persons what if happened it would never have brought me where I am today. I was glad that what if didn't happen to them. Life is a two way street that continues from our birth to our death. All relationships in life are a two way street. This is the way they work. One person gives to help the other person and then the tables turn and that person is being helped. Whether it is in physical ways, just being there, or listening. It's when the 50/50 switch gets flipped and one person feels like they are giving more or maybe it's that people change and relationships dissolve, and relationships end. Many times a person wakes up to realize a relationship they thought was good for them was actually toxic and it's time to break away. The two way street in relationships comes in so many forms. Finding your balance when it comes to relationships is personal and you have to do what is right for you many times that means letting go and that's ok.
You know this one is coming. Ready?
Illness is a two way street. This is huge for me because I picture myself walking down a gravel road in the country surrounded by a lot of huge lush trees. Up ahead in the distance as I move forward I see the fork in the road. In the moments before the fork is in view I'm lost. Illness has a way of doing that to you. What am I going to do with this illness thing? The thoughts and unknown of illness can be overwhelming at times. Just as I feel like I'm about to fall over the edge the fork in the road appears. If I go left there's a big black opening as I peer down the road. It's the dark side. The side I fight with when I am in pain, who am I kidding the side I deal with pretty much everyday because of the unknown. The unknown is hard for a control freak. It's the side I fight with when I'm so fatigued I can hardly do anything days. It's the road I hate to see. I turn away and look ahead and peer to the right. Ah there you are! This road looks brighter. There are days the road on the right is a little cloudy but the sun is always out even if it is in the distance. I see it. There are the days the sun shines bright and I wonder to myself, "Am I really sick or is this some kind of odd dream?" The right side keeps my head on straight. I like that side. I realize the choice is mine everyday on which way I want to go right. I chose the right on most days but I'm human too. There are the days I pick the left and have my pity party. Why? Because this is so unfair! It is. Blah, blah, blah. Then I realize I can't change it. Look to the light.
The funny part that always amazes me is when I am feeling good, good for me, on the right side of the road, I have a hard time remembering the left and it's darkness. A few weeks ago I was in the depths of the dark side. I had days where I didn't even do my hair or makeup and could have cared less. It took everything I had just to breathe. Sounds crazy I know. Crazy but true. Then last week I began feeling better for some reason. I have no idea why. I must clarify my better. It's my better, not yours, not the kind of better you may be thinking. Better enough to clean my house. Better enough that I could breathe. Better enough that my fatigue went from a level 10 to a 5 or 6. The sun is out on the road I'm on, at least for the time being. The scary part is when I'm on this road I always have that dark dread in the back of my head. The, "When is it going to flip back" kind of dark. The pain is always there but it's funny how you can deal with pain when your fatigue isn't as bad. The energy helps you deal with it in some odd sort of way. Pushing on and doing more feels good. I always need to remind myself to pace my steps when I feel better because when I over do it that is when I am sent back into a tailspin. Ahh, the roads we take when we are chronically ill, some well traveled, some less traveled.
The two way street or so called fork in the road that we see so often can pose difficult dicisions for us. Staying strong when you feel weak pushes you to make the right choice when you are staring down that gravel road and see the fork. I hope you are able to choose the right side today and if not there's always tomorrow!
Skimming through the social media sites I see everyday there are times I tend to become somewhat frustrated with articles or advice I read. I am a firm believer in educating myself on my illness and learning as much I can about living with my diagnosis. If you don't take that control no one else will. I hope this is true for yourself too.
Today I read something that said, pain only makes you stronger. Really? I'm pretty sure if you asked someone who lived with chronic pain they might say something like this, "Pain makes me tired, pain wears me out, pain makes me angry at times, and on certain days pain controls my life." Makes me stronger? Maybe. I have read, pain isn't for wimps, now that one I tend to believe. Pain causes you to prioritize your life. It forces you to focus more on what is good for your health. It forces you to make choices that work for you. Why can't all these expert advice givers write about the real aspects of living with pain instead of giving their advice about it? I get confused.
There are the times I read something that is so ridiculous I will bust out in a ha ha ha good one. A perfect example is the sleep cures I have read so many times. When you are in pain sleep is disturbed no matter how many tips you read and apply to your "trying" to get a good nights sleep. Don't watch tv. Don't eat before bed. Only go to bed when you are tired? Really? So I should go to bed 24/7 because I'm always tired, which brings me to the fatigue. Exercise more, do this, don't do that and your fatigue will get better. Ok if you say so but when I'm so weak I can hardly get out of bed how am I suppose to exercise more? I do the best I can with what I have. I get so frustrated with some of this advice I want to scream. It's not like the chronically ill aren't already doing the best we can and we sure don't need to feel put down anymore by people who have no idea what it is like. That's another thing that bothers the heck out of me, the people who write to tell us chronics what we should or shouldn't do are the same people who are healthy and have no health issues holding them back. It's kind of like people who have no kids telling people who do what they are doing wrong raising theirs. Ya that, it makes no sense. Or it might be me trying to tell someone how to do their job when I don't work and have no idea what it is like to have a job. There are so many times I read someone's opinion on my illness that cause me to come unglued. I could go on and on.
I am learning to keep my feelings in check when I read something and snicker under my breath but it sure isn't easy at times. I know for me stress is something I need to control. Having a big heart I tend to get angered quite easily when I feel people are being put down or made to feel what they are doing isn't enough. We are all the captain of our own ship. We are under no obligation to let anyone's opinion rule our lives or the way we live. I'm personally trying to steer clear of advice or articles that do not lift me up and give me hope. Life is hard enough we must take control and push on the best we can.
I feel like I'm living in a dream today. How can it be? I feel really good and believe me that hasn't happened in a long time. Honestly, I have been feeling so awful that I can't even remember the last time I had a day like this. If you asked me what feels different I couldn't answer with one definite answer except for the fact that I don't have pain and I don't feel sick. If I could put my order in I'd like to order up today until the day of my death please. Is that too much to ask for? I think not, but my out of control immune system I'm sure is laughing at me right now. I can envision my evil body devil planning it's next line of attack. I remember when I use to have more good days than bad but now it seems I have more bad days than good. The evil is always lurking in the shadows. When I told my son I am having a good day he wanted to know what I did different. The only answer I had was that I had less pain while sleeping last night which I know helped me to get a deeper sleep. When pain controls your life everything is hard especially sleep and we all know how we feel when we don't sleep well. When I woke up it felt like someone flipped the switch on my immune system and I'll happily take it. It's all so strange to me how it works.
I often wonder back to life when I use to be normal and by normal I mean when I had enough energy and not a ton of pain. The days when I was able to do anything I wanted without a thought. When I didn't have to plan rest time or wonder if I was over doing it. The days of not worrying about the price I would pay for anything I did. It seems like some sort of odd past life. Almost like I have been reincarnated into this new and unpredictable life I now lead. It's all so confusing to me. I try to make sense of this new life as I dream of the old. I know I have nothing to complain about because I have been blessed beyond measure in so many other ways but I'm only human as so many of you are who live with this autoimmune monster. I almost feel guilty when I blab on about the illness part. I try to put it all into perspective and realize the illness, even though it is a huge part of my daily living, is such a minute part of my actual life. The love outweighs the pain and suffering. The good people I share my life with, not only family but friends, keep me pointed in the right direction. The love pulls me out of the depths of the hell. The best part is I am able to still spread my love to those around me too. The full circle I call my hope.
This weekend is the forth of July weekend and I am hopeful today is only a taste of the goodness to come this weekend. I hope this feeling better dream continues into the weekend. Who knows? The switch could flip back in an hour that's how unpredictable it is. Rich and I have been talking about a few things we want to do this weekend but the end of the discussion always ends with, "It depends on how I/you are doing," said by either one of us. It's always the elephant in the room. We both try to forget but we both know it's there and we both know how it controls our lives. The best part is it's all ok. Rich is a saint the way he puts up with me and I just go with the flow taking advantage of the good when it happens and slowing down when it's bad. Today is a beautiful day and for that I am thankful!
The last week hasn't been easy. I can't seem to get it together after getting off the last dose of prednisone then a medicine change didn't help matters at all. I am so weak I can hardly do anything physical. It feels like I'm walking through thick mud every time I move. I've been trying to do some things around the house the best I can but it is so very hard when I feel like this. This is definitely not one of those times I need to hear, or tell myself for that matter, if you get moving you will feel better. It's hard to explain to anyone how that irritates someone with chronic illness. Honestly, three days last week I didn't even do my hair or make up because I was so weak, tired, and exhausted. If you know me that is not me at all. Prof of how bad last week was.
I have to believe the best medicine I can think of for my situation is my family. I might feel like pure hell many times when I see them but they always know how to make me laugh and most importantly of all, understand. It isn't the same when you are with people who aren't your family because they just don't get it. My family knows the struggle is real and they know how to handle it the best. They don't baby me or treat me like a sicko, they just understand. After all that is what most people who live with chronic illness seek, a little understanding. We don't ask for much. I got off the phone with my daughter one day last week and it always helps. Hearing how the grandkids are doing always makes me smile. When I visited my son and daughter in law a few weeks ago I did really well. I had a little incident with my breathing while we were walking, other than that things went well. It was a pretty good week that week. Funny how everything can change in an instant. We were walking while I was there and I became very short of breath and the sweetest part was my son asking me if we needed to stop so I could do my inhaler. It's the little things that matter when you are constantly dealing with illness. It's like my family can read me when something isn't right, like they just know. Saturday when I saw my daughter she said she could tell by looking at my eyes I wasn't feeling well. Like they say the eyes are the window to the soul. I guess they are the window to chronic illness too. I am so thankful for my family. They see you at your best but they also see you at your worst. Most importantly they don't hold it against you when you are not doing well. It's funny how that works with the people you love. It's a fact that the rest of the world only sees me at my best and has no clue.
Like I said I haven't had the best of weeks this past week, almost brutal in part, because my insurance company decided they didn't want to cover one of my inhalers so I had to switch to another one. I switched and after a few days my breathing took a turn for the worst. Being the perfect patient I didn't call my doctor right away because with most medications some need time to work. I hoped the symptoms would get better with each day but I felt like they are getting worse. Breathing is hard work when your lungs aren't taking in enough air. Totally exhausting. Every time I move I'm huffing and puffing trying to get air in my lungs. I slept more last week than I have in the past month. Tired doesn't even begin to explain it. Friday I finally gave in and called my pulmonologist. I'm wait for his call back and hoping he switches me back to the inhaler I was on just nine short days ago. It is amazing to me how quickly your health can plummet. The worst part is the thought that he might put me back on prednisone again. I love the quick relief I get from pred but not the side effects I get from it. The wonder drug that turns you into a bitch from hell. I always tell Rich, "I'm on prednisone so don't piss me off." But by now he pretty much gets it so I don't really have to warn him. I feel sorry for the rest of the world though. Saturday I gave into the fact that I must do my albuterol inhaler every fours hours and do it faithfully until I hear back from the doc. The mind games I play with my health are so ridiculous. I try to not do my inhaler like I have to prove something to myself like I'm stronger than the illness. If I tell myself I don't need the inhaler my body will listen and do what my mind says. Really? You think by now I would learn. I wonder if I ever will? I guess it's all a part of accepting this is going to be my life forever now and I really don't want to believe it or accept it.
Being chronically ill is so unpredictable. The ups and downs can eat you alive if you allow them. That's how life goes when you are chronically ill. You just never know. In the meantime I lean on my family for the support that gets me through. The hope that they give me when I have a hard time finding my own. They remind me the hope is always there even when I can't see it.
Today was the day. I saw my Rheme about the cyst on my knee and had it drained and shot up with the magic drug. The best part is I shaved yesterday but missed a patch on my knee. Looks real special. I guess I will have to start wearing my glasses when I shave before a doctors appointments. Oh well whatever. If I were younger I would be embarrassed now I really don't care, it is what it is and gave me a good laugh when I tore the bandaid off. So the question is, "Did it hurt?" The answer, "Not at all." I know you would think having a needle jabbed into your knee joint would have to be painful but for me it wasn't. It basically feels like a tight pressure feeling if that's the way to explain it. I have had several injections and this one by far has been the least painful of all. My rheumatologist is awesome, have I mentioned how much I like him? He is amazing and I am so thankful for him! The best part of the injection was the fact that because he went in at the front of the knee he thought he wouldn't get any fluid out because the cyst was in the back of the knee but to our delight fluid came out. I'm sure that doesn't sound like much to most but for me it will help a lot with the pain and the stiffness I have been experiencing. The real test will be tonight since the pain has been excruciating and keeping me awake all night. I know from experience injections can take some time to work. Patience my dear patience. Lord knows I have plenty of that to go around living with this everyday. I am so thankful tonight for the care I receive from the doctors I have now. Doctors who actually listen to me. Doctors who take the time to find out what is going on when I have so many issues that never end. Just when I think I'm over one thing it's like my body decides it doesn't want me to be on a even keel and it decides to attack something else. I'm trying to keep an open mind and keep my head in the day to day basis zone but....it aint easy. This knee thing has been an issue for a long time so I can deal with that, along with the fact that it probably isn't going to magically go away. I can handle that. What I can't handle is the unknown. The what's next? I try not to go there but it is a battle just as much as the day to day physical battles that never end. I keep the what's next in the back file of my mind but it's always there. If I allow it to come out of the files it can and will eat me alive. The what next somehow controls everything. Each time I make any sort of plans the what if jumps out of the file. I finally have come to terms with it knowing if I make plans and I am sick or having issues I can cancel. I really hate to do it but if need be its happening. I also know that the people in my life always understand. I'll go on and fight the what's if's in this life and press on. Things are looking up after today. I know and believe relief is on its way. I hope this shot gives me some life back. I'm tired to the core from the pain. It's exhausting. I've gained weight. I feel terrible about how fast that happened. The steroids over the past three months haven't helped. No I'm not using that as an excuse it is just the reality of steroids. I'm hoping if the pain gets better and I sleep better I will have the energy to focus on healthy cooking and eating. Energy that is highly limited from extreme fatigue. I know I can do it. There are so many struggles that go hand in hand with chronic illness there are too many to write about. If you let it it will eat you alive. You can't let it. You have to stay in the driver seat and be the boss even when you want to give up. It's doable so keep up the fight my friend!
I have been pondering over this blog for a week or more and have been waiting for the moment to hit me when I felt confident enough to write it. Every single time I write I feel like I run the risk of sounding like a whiner and a whiner I am not. I am sure some people who don't know me could take my blogs the wrong way so there is that struggle with having a blog and sharing your illness journey. I saw this last week and thought how perfect it is for a blog:
How true and how sad both at the same time. When I first read it I was reminded of the first time I saw my new rheumatologist. He was checking my joints and would ask, "Does this hurt?" My answer was well yes but it's because of this or because of that. It seemed every time he asked if something hurt or asked if something gave me issues I had a counter offer so to speak as to why it hurt. My knee hurts but that's because I have bad feet. Me elbow hurts because of the tennis elbow I had been experiencing at that time. Funny how that elbow pain disappeared when he started me on a new treatment, Humm. I remember after every excuse I gave him he would say, "So that's a yes?" I remember staring at him with the deer in the headlight look only later to realize how much I minimize my pain. "So that's a yes?" "So that's a yes?" It's painful to say, "Yes that hurts," to every issue I deal with. I remember after a few times of him saying, "So that's a yes?" I gave in and just said,"Yes," without making anymore excuses. Finally a doctor who understood.
The more I thought about it after I left that first appointment appointment I realized maybe I minimize my pain to make other people feel better. Or maybe I do it to feel normal in a life gone wrong. Or maybe if I deny the pain it really isn't happening. Or is it because of all the doctors in the past who told me I was to fat or lazy and needed to get moving more, little did they understand moving more caused more pain and put me in a vicious cycle of hell, besides I was moving already and I was still suffering. I don't know. The mental anguish is so much harder to handle than any pain that is thrown my way. I think. It's easy to say that now as I am on steroids once again, fourth time in three months to be exact. I'm sure my bones are not happy but the rest of me is feeling better at least for a minute. The strange part about steroids is you do fine on them and as soon as you wean off the trouble starts all over again. As my Rheumotologist said last week, "Getting off steroids is like letting the horse out of the barn when it comes to autoimmune disease." Makes perfect sense because that is how it feels. Last week I called him because my knee was so painful for over a week and I knew the arthritis was acting up. I was hoping for a steroid shot to get me through the pain and allow the knee to heal but when I saw him he said he needed to have an ultrasound. He was pretty sure I have a bakers cyst but wanted to make sure before he treated it. I started the steroids last Friday and within twenty four hours the pain was better. It's funny how steroids can mask a problem that is actually still there. I went for the ultrasound yesterday and of course he was right, bakers cyst caused by the arthritis. It's funny because a bakers cyst has nothing to do with baking it is just the man who discovered what a bakers cyst was. Crazy name. Although if you're going to have cyst why not one that reminds you of donuts and cake? What actually happens with a bakers cyst is the knee becomes inflamed and it produces extra synovial fluid. The fluid builds up in the knee and because of the knee cap the fluid has no where to go but behind your knee where it causes a cyst. All I know is it caused a lot of pain and sheer exhaustion. The pain was so bad at night I tossed and turned all night in pain. Night is always a bad time of day for anyone with arthrits but this was beyond any pain I have experienced besides my cervical pain before I had those joints fused. Before the steroids last week I could hardly think straight because the pain was so exhausting, hard to explain unless you have experienced that kind of pain.
Doctor said if it does turn out to be a cyst then next week when I go back he will drain it and shoot me up with steroids in the knee and we will have to keep an eye on the cyst because they do tend to come back. I am hopeful the treatment will work but with my track record... In the meantime I am thankful for the oral steroid treatment. Here we go again with the vicious cycle. Wondering if it will ever end and knowing what that it probably won't. Coming to terms with that reality isn't easy but I have to make it doable. I will continue to keep my head focused on brighter days and try to leave the darker ones behind. I will continue to fight in my illness journey because I know no one else can do it for me. I'll use my story to encourage others and that is what gives me hope! All at the risk of being a whiner.
I'm sitting here trying to keep an open mind and forcing my mindset to the world of positives even though it is extremely hard. When I get to that place of throwing my hands up in the air and giving up I have to fight to keep my head above water. The thoughts that I have that I have to live like this for the rest of my life become overwhelming and I wonder if I can.
I am having a rough week on so many levels. I was put back on steroids for the third time a few weeks ago and when I took the last magic pill it's like my immune system went even more haywire, this happened the last time too. I asked my Rheumatologist why I have such problems when I taper off the steroids and he said it is because I am probably tapering too fast. I'm a slow learner but after this week I realize I must tell the doctors who treat me with steroids for other reasons besides the joint pain that I have to taper more slowly. Aside from joint pain that is on the rise I still am dealing with a sinus infection that started last February. I'm pretty sure this is the worst one I have ever had. I went yesterday and was put on the third antibiotic in three months. Good news is no steroids because my breathing is good and I am extremely thankful for that because I have been dealing with that since February too. I sure hope this treatment works because this is no fun and I don't want to even think about what will come next. I know since I already had sinus surgery in the past there is a good possibility of it in the future. Truthfully I'd rather be chased by a bear protecting her cubs than go through that again. It's that bad. My brain is on overload with all that is going on with my body from head to toe, literally, but I'm not going to let the body win. I don't feel like doing anything so to keep me going I bought a 1000 piece puzzle. I'm loving puzzles and I'm not to proud to admit I'm good at them. It's good to have something to do because it keeps your mind off your aches and pains when you have them constantly. Being sick like this for three months can take a toll on you so you have to have your bag of tricks ready at all times. It's very hard this time of year too because Rich is so busy at work and we don't get much time together.
I'm so thankful I also have my dogs and now my cat to keep me going. Out of all my medical treatments I believe without a doubt the number one best therapy for me is Eva, Ella, and Portia. Having either one, two, or all three of them at my feet or on my lap all day long gives me hope. Yes there are times they are too needy and when I don't feel well it might get overwhelming but then I think about how fortunate I am to have them to push me, to keep me from falling into the dark abyss that would be so easy to fall into. The other day when Rich and I were talking we were talking about the dogs and the cat and I was laughing and jokingly said I promise no more animals and he said, "If you want more you can get one." He said it very seriously and I knew he meant it. At the time I laughed and blew it off saying, "No way, three is enough I only have two hands to pet them." End of convo. It didn't hit me until the next day when I was driving in the car that the realization of him saying, "If you want more you can get one," really meant. When I thought back on how he said it and the look on his face it was like everything else with him. He would go to the end of the earth to get me anything I want. If I see something in the paper or on tv and make a comment such as, "That's cool," or "I like that," his answer is always, "Get it for yourself." Nine times out of ten I don't say it because I want it but because I like it. The reality driving that day hit me hard as it has before. He would lasso the moon out of the sky for me because the one thing he really wants to do for me, he can't, he can't make me better. He watches the suffering and being a male and a fixer he wants to fix my illness but, he can't. That realization is so painful for me because when I turn the tables in my head and if it was him I would want the same thing. I have always said illness is so much harder on the ones that have to watch the suffering than the the ones suffering, at least in most cases. Love is funny like that. Most of us are good people who hate to see suffering. How many parents have sick children and say, "I wish I it was me instead?" It's no different in most loving relationships. We all know suffering is life. We all suffer many times in our lives, many times short term, but many times in the long term. Realizing the suffering is there and is ours to learn from can be a long painful process but it is part of our journey. It's can be a positive learning experience or a negative one. You choose. It's all in how we decide to handle it d no one else. What's your choice? I know mine!
I had an appointment with my Rheumatologist this week. It seemed quite senseless and I told him so when he walked in the room. The prednisone I am on for my breathing issues has miraculous affects on my autoimmune disease. High doses of steroids suppress the immune system and the immune system stops attacking your body. Whatever that means, to me it means less pain, that's all I know. My pain has been very well controlled this week and sure feels good. The best part is no pain at night which makes sleep somewhat easier even with the steroids on board which can make you hyper and not able to sleep. I guess I'm somewhat fortunate with that side effect leaving me alone.
I had my list of written questions ready for my Rheumatologist when he walked in the room. If I don't write them down I forget most of them. In between appointments I always take notes on my phone of any new or worsening symptoms. If I don't keep track of changes I forget what went on in the few months since my last visit. I have new and worsening arthritis that I needed to talk to him about. I am always amazed at his knowledge as to what is going on with me. I ask him a question and he always knows what is causing the problem. Its nice to have such a knowledgeable doctor who is able to figure everything out without batting an eye. His explanations always make sense because they are real world terms and not medical terms. So here we go. I have been having more issues with my jaw and he said the arthritis is in there now. I told him I didn't want it and he smiled and smirked and said, "I can't change that." I told him, "But you're the miracle worker." We both laughed. We have to keep laughing. We moved onto the right foot. The big toe has been swollen and painful for some time now and I was not thinking arthritis but guess what? Yup. My toes are going numb and it is affecting the nerve at the base which is causing the numbness, pain, and swelling. He explained it as the arthritis causes swelling and the body tries to fix it which in turn causes collagen to buildup around the toe that pinches the nerve. Makes perfect sense. Of course my next question, "So it will get better over time?" Wishfull thinking as usual. Answer, "Nope." Foot doc, steroid shots, possible surgery to clean it out. Ughhh, not what I wanted to hear at all but it is what it is. When you are chronically ill you almost never hear what you want to hear. Sigh. Next, dry eyes are worse which is from the sjogrens and the fact that the punctal plugs that I had in my tear ducts fell out so the dryness is bad again. I need to go back to the opthamologist and have new plugs put back in again. This is another big decision because I can have the kind I had in before knowing that they will fall out or I can have permanent ones put in. I guess I will see what the opthamologist suggest. Then there are my teeth that continue to give me one problem after another but I didn't discuss this with my Rheume because doctors don't deal with teeth issues. Sjogrens also attacks your teeth because your mouth is dried out. No taste buds, tooth decay, etc. it never ends.
This probably doesn't seem like much to the real world but when you never feel well and it never ends it is extremely stressful. I want to throw it all away and forget it but I can't. I must deal. When I look at the big picture knowing I need appointments with and opthamologist, podiatrist, dentist, not to mention the routine appointments with the endocrinologist, pulmonologist, and rheumatologist it gets very frustrating and overwhelming. Not to mention the stress of the expense and the fact that I don't work. It can eat me alive at times. When I allow my head to get too out of control over it all I have pull back and break it into manageable segments. One issue at a time. I have to figure out what problem needs to be addressed first. What is giving me the most problem at this certain moment? It isn't easy to discifer this when they all feel pretty equal on my problem meter. It's strange when you have one thing after another how no matter how many issues you have your brain is able to put them in a corner and tell you none of them are a big deal. I tell myself all the time to forget about it but it isn't that simple. I wait and wait until I am suffering in the worst way possible before I call the doctor. Like it's all going to magically disappear while I struggle to ignore it. Sadly it doesn't go away as things continue to pile on top of one another. I always wonder if it will ever end. The walls might be crashing in around me but I must keep the control and stay in the drivers seat. When I get down and out I pull myself back together because I realize no one else is going to do it for me. Writing this makes me realize I will start with the simple fix and move on from there. Today I'll call the opthamologist and get that ball rolling. When that is done I'll regroup and decide what issue needs to be taken care of. Breaking it down makes it much more doable than when I look at the big picture. Breaking it down makes me realize I can do this and I will. I hope this helps you realize you can do it too. Press on my friends.
I know I have written about this new chapter in my life but to tie this blog together it's worth repeating. Last December I had my first breathing test and found out why I have been experiencing so many breathing issues over the past few years, more like five. The problems had progressed to the degree that I knew I had to get to the bottom of what was going on, not that I hadn't tried in the past. I have told a few doctors in the past but as usual when you experience one thing after another you get blown off as if you are fine even when you know you aren't. A few years back I finally found a primary doctor who understands the zebra mentality and she ordered a breathing test. The results came in as a combined pattern of asthma and copd. I must be honest I never in a million years expected that. I knew something was wrong but I guess I never went beyond knowing something was wrong and to what it could be. I think when you are sick with one thing after another your brain learns to put new things in the corner. Maybe, just maybe, if you don't think about it too much it will be nothing and go away. Funny part is by now I should know it doesn't magically disappear. My brain still can't comprehend that chronically ill me is ongoing forever whether I accept it or not.
When I became sick years ago the more research I did on being chronically ill I learned a strange term for people like me. Zebra. "When you hear hoof prints think horses not zebras." This is a term taught to medical students. In medicine zebra is used as a term for rare diseases. Doctors are taught to look for the simplest answers, horses, but sometimes it goes much deeper, zebras. Sometimes it isn't all cut and dry. Sometimes it takes time, time to diagnose and time to treat illnesses. One size doesn't fit all in many cases. I'm pretty sure,at least from my experiences, that doctors do not like zebras. Doctors are taught to make us better and when that doesn't happen it has to be frustrating for them. I get it. I really do. But I'm sure that is why so many doctors see my history and want to bolt out of the room. Happily I can finally say that isn't happening anymore. I have an awesome team of specialist that are bringing back my faith in doctors. Don't get me wrong I have had a few good ones in the past, emphasis on few, but now I can say all of my doctors are top notch. Believe me I know a good doctor from a from a not so good Doctor. I truly believe my luck with doctors changed when I switched to the Spectrum Health System. I am thankful beyond words and I tell them how much I appreciate them working with this zebra every time I see them. Having a doctor believe you is half the battle when you are chronically ill, proof in my lung diagnosis.
Yesterday I went back to my pulmonologist for what was suppose to be a four month recheck and ended up being a two month recheck up because I finally broke down and called last Friday. I was tired of feeling like I wasn't getting any better and had a few new symptoms I needed to talk to him about. He wanted to see me because of my contacting him. I had another breathing test to compare it to the one I had last December. When I saw Dr. Koets after the test for the results I asked him if the test was worse and he said it hadn't changed from last time. In fact the numbers were exactly the same. Then he told me the chances of that happening are almost unheard of. I have been on treatment for four months and nothing has changed? We discussed the new symptoms, he checked me out, took his notes, and said with a smirk on his face, You are a tough case to figure out." I told him, "I know I am." In my head I was really thinking, 'He gets me!' I'm not sure but maybe some people would take offense to a comment but for me it brought validation. I live in a world where I know people think it can't be real that I am as sick as I am. Comments or smart remarks from people in the past about their doubts stay fresh in my head but the reality is they have no clue. Hearing a doctor say it like it is, for me, is like a dream come true. It helps me to feel a comfort in knowing he wants to help me. A simple comment like his helps the zebra mentality I have every time I go to the doctor bring me into the real world of being a horse like everyone else. If that makes any sense. The new line of defense for two weeks is prednisone. We are hoping this will open up my airways and help me breath better. If it works he said there are other inhalers we can add to my current treatment. If not we will go from there. I am hoping and praying this works. I'm sure he is too. This is the third round of steroids I have been on since February which kind of scares me but not breathing is much scarier and at this point I am willing to try anything. What is a zebra suppose to do? I trust my doctors fully and I will follow their treatments to a tee hoping for the relief I deserve. The best part about steroids is that it takes away most of my arthritis pain and gives me energy. Steroids aren't good for you but the benefits are wonderful for a chronic. I really wish they weren't so bad for you because they make life doable. I feel like I want to do things because less pain means less fatigue. I will enjoy the next two weeks of unexpected relief and go from there.
Round three on steroids begins. Let the games begin!
Granted dealing with chronic illness is something you get use to. What a horrible thing to say in only a few words but sadly it true. In some odd sort of way it becomes a way of life, a way you don't want, but your way of life. Dealing with the symptoms becomes second nature. The worst part is dealing with all the planning and wondering when it comes to illness. This weekend our son graduated from Pharmacy school so we drove back and forth to Ann Arbor twice. I tried not to think about riding in the car too much and decided I was going to go with the flow, after all how bad could it be? A two and a half hour rife four times in twelve hours seemed doable, and it was, except for the unexpected side effects. Before the trip I kept the thoughts of the price I would pay tucked in the back of my mind. I have said it many times before that when you are chronically ill and make plans you always have to out weigh the good and the bad of everything you plan, from a shopping trip to your sons graduation. It is the constant battle that goes on in your own private suffering. I did well with the ride and have always loved road trips because you are confined to the vehicle. I love talking about anything and everything when I ride in the car. Rich and I don't get tons of time together so when I get him trapped in the car, alone, muahhhh, I take total advance. Poor guy. I thought I was doing well physically until I got home from each trip and noticed ankles and feet the size of large sausages hanging in a smoke house. The longer I was home the pain set in and the burning wasn't any better. I lathered up with the aspercreme, one of my best friends, and kept my feet up as much as possible. It feels somewhat better and was worth all the pain to watch our son become a doctor. Proud moments my chronic illness will never take away from me. It can rob me of my health and cause me pain but it can never tear me away from any monumental moments with the people I adore most in life.
I feel, at times, like the chronic illness wants me to believe that it is the boss and it's odd how the illness can become an actual voice in my head. The arguments I have with it can be exhausting. The words I say to it I am unable to write here. Even though it is true that the chronic illness controls a lot I will never fully allow it to be in the drivers seat. I will continue to pay the price and prove to it that I win, as I did this weekend. This weekend proves to me that I am still normal and that there is so much life out there. I realized it after the graduation as I we walked to the restaurant for dinner. There was so much life on the streets as we walked. Passing all the people who have normal lives wondering how it must be to do all the normal things the rest of the world does. Oddly I didn't feel jealous or sad for myself but happy for every one I passed by or saw in the distance. It made me happy they didn't have to always be one step ahead of their illness. Happy they'd could enjoy the city life they all take for granted. The hardest part for me is knowing I am different but still looking like everyone else on the outside, at least to everyone else. Every time I look in the mirror I wonder who the person is looking back at me. I go as fast as I can getting my hair done and doing my makeup because looking at myself is painful. It makes me remember who I was and the dream I have of becoming her again. I'll never lose that hope no matter how bad this is. I'm sure my emotions are running high because I had to make an unexpected appointment with my polmunologist because of symptoms and when I have doctor appointment it's very hard on me emotionally. It's another one of the hardest parts of illness. I have to fight the urge to let the illness win but before seeing doctors I still worry. I've learned even though the illness won't win its still ok to admit it isn't easy. I've learned I'm in charge but that doesn't mean the unknown of the future isn't a little scary. I've learned I'm stronger than I ever thought possible while at the same time knowing I'm a little weaker than I ever thought I could be. I've learned that sometimes some of the hardest parts of being ill become the parts that make me the strongest and for that I am grateful.
I remember when my son use to tell me how lucky I was because I grew up with the greatest music ever. I must agree. The late seventies and early eighties had some of the greatest bands as far as I am concerned although my love of music helped me through many years even before that. These days most of the music I listen to is the seventies and eighties because I am not a fan of much of the crap written these days. I was riding in the car today listening to wlav the radio station we listened to back then. You have to take yourself back to that time and realize music was delivered by either records, 8 track tapes, or the radio. We didn't have many choices like kids do today for our listening pleasure. We didn't know the difference and made the best of what we had. Good times I'll never forget we're sprung from so many songs.
Today a song came on from a group that wasn't my favorite but there were a few songs they sang that I liked one of them being the one blasting through the speakers as I drove to my swimming class. You can't always get what you want by the Rolling Stones. I listened and smirked as I always do listening to lav because almost every song reminds me of a moment in time or brings back a memory of someone I laughed with. We all know how those high school years were, no stresses except worrying about getting homework done and what everyone was doing that night.
The song was playing and I began to drift off in my head when they sang, you can't always get what you want, you can try sometime you just might find, you get what you need. I'm sure I was still smiling until I started thinking about how this applied to my chronic illness. When it comes to chronic illness you never get what you want, mostly you get what you don't want. I thought about what I would want. I thought to myself, just to be normal enough to have a real life. Just a week or ten with no pain. My mind wondered some more but then I thought about the fact that I could have no chronic illness but have a really crappy life. I feel fortunate for my life even with the chronic illness. If I was healthy maybe I would have a job I hated or a husband who was a total jerk. Luckily for me I only deal with the illness part. Even after all these years the struggle of illness is so raw and real. I've had a rough few months and I am trying to keep my head above water about it. You know the saying, If it isn't one thing it's another? That's how the past weeks have been for me. It was really beginning to drag me down. Last week I made the decision to stop allowing it to mess with my head so much. When I felt down I did something. Did it make it all go away? No, but it distracted my head from the chronic illness despair. The whole time that song played as I drove today I day dreamed until it was done. I realized I can't always get what I want but I do always have what I need. I have the best circumstances possible while dealing with all of this and I guess that's what I need. It seems so much easier writing this as I had a better day today, not sure how this would have came out had I written it last week. I'm going to carry that song in my head for the next few days. You can't always get what you want, you can't always get what you want, but if you try sometime you just might find, you just might find, you get what you need, oh ya!, and I will know that is enough.
You know you're a sicko when...you have no idea what you are doing.
Seriously, I am so confused when it comes to my asthma/copd diagnosis. It's all so new and it messes with my head to the point of where it may explode. Frustrating and stressful both at the same time. I know that's how it is for everyone dealing with chronic illness but when a new diagnosis hits it take a lot of time to figure it all out. I've learned to live with the other illnesses I deal with because most of them I have been around for years but this breathing stuff confuses me. The biggest confusion for me is when to call the doctor. I know they say when in doubt call but when you call too much it sets you up and puts you in the category of, "Oh it's her again." I know the doctors I have now are not like that but past experience has set me up for this way of thinking. Sad. I also believe the longer you are ill you avoid the call even more not only because of the labels, made up in your head, but because the last thing you want to deal with is another thing. You know how we humans think, if you avoid it then it isn't happening. The past few nights have been rough with my breathing. There is nothing worse than waking up wheezing, rattling, crushing headaches and feeling like there is a ten pound boulder sitting on the middle of your chest.
Thank God for inhalers. Today I had to clean them, hence the picture, which hit me with the reality that this IS really happening and IS something I'm going to have to deal with for the rest of my life whether I want to or not. I also looked at my three inhalers next to each other and thought I have to accept this. The reality of the three inhalers, one on my nightstand, one in my purse, and one in my sunroom is real. I can't run from it even though I want to. Learning that every time I have to do anything physical I need to puff. Learning that when I wake up in the middle of the night and am having a hard time breathing, puff. Learning that some days I need the extra puff to make it through is ok. I try to put it off when I have an attack because if I puff I'm giving into the reality of this new diagnosis. Looking at those inhalers after I cleaned them helped me realize I must accept that it is ok. The acceptance that the fatigue is ok and it is ok to give into it. The acceptance that it's ok to call the doctor even if it is to just let them know what is going on. Ok that's a lie I'll probably give it another week because when you are chronically ill you always believe that tomorrow will be better. I think that is called hope.
You know you're a sicko when...you become strong enough to accept all that is happening to you and learning it's ok to be where you are. Trying not to look back at who you use to be but learning to love and embrace who you are now, from this day forward. Easier said than done but doable.
We aren't just chronically ill we are chronically fabulous! We can't allow being ill to eat us alive. Keep up the good fight!
Today was Easter and one of the first questions the Pastor asked after starting his sermon was, "What are you afraid of?" I have to admit the first thing that came to mind as I was sitting in a room of a few hundred people was germs. I know that sounds crazy but for me and other chronically ill people it is real. I freak every time I go out in the germ filled world. Church is the worst because everyone has to shake hands and how do you avoid an out stretched hand? "Um not thanks I'll pass because I don't know where your hand has been?" It doesn't work like that so I put the hand sanitizer in the top of my purse and use it, most of the time. It's pretty easy to conceal until the whiff of it notifies everyone in smelling distance that there's a germ aphobic somewhere close by. I want to laugh every time I use it because we all know how people are. I'm pretty sure I would think the same thing if I was healthy and didn't have to worry about germs. It wasn't so easy to use today as I surrounded by people and it might have been pretty rude to use hand sanitizer after I shook hands with the person sitting next to me. I sat there while the germs permiated into my dermis pretty sure my connective tissue was already going into shock. I left church praying that my immune system is strong enough to combat the germy critters invading my space not to mention the ones I inhaled but I won't go there. Hold it my nose is beginning to burn a little bit. Ha
I got over the germ issue, to some degree, and the Paster went deeper on the, "What are you afraid of" subject. He went on to tell a story about when he was a child and how the dark scared him. He ended with the fact that most of what we fear comes from a fear of death. You had to be there to hear the whole sermon but if you go deep enough you can figure it out. I thought about my biggest fear after sorting through the germ invasion and the funny part was I had been thinking about it while we were sitting there waiting for church to start. My fear? Public. People. Groups of people. I never feel I fit in. I'm an outsider because no one can relate to me. I mean what do you talk about with the sick girl? You earn the label and it sticks. I get very nervous when I have to be with people because I hear so much life when mine is very smell. I looked up some volunteering opportunities in my area and maybe one day soon I will feel up to doing that. It probably doesn't help at all that I'm in a flare right now with pain at higher levels than normal especially at night. You know it's bad when you have to pee in the middle of the night but it takes you so long to loosen up and get to the toilet and whoopsies you're two years old again. I have to laugh. It's also humiliating to be a two year old again but hey I have no shame so why not share it with the world. It's one of the ugly sides of chronic illness. The ones nobody talks about. It ain't always pretty being chronically ill.
Another thing that im afraid of is going to the doctor. When I went to the doctor a few weeks ago and saw a new doc and she looked on the computer at my book diagnosis' and says, "Wow I would have never thought you were dealing with so much from the way you look and act." What am I suppose to say to that?" I just said, "I have to put on the face." Literally, makeup covers a multitude of under eye blackness and pale skin that looks like a corpse. Bright colored cloths always help with the walking dead look. Then I started thinking when I go to the doctor should I not wear makeup, do my hair, or dress decent so they can see what I really look like? I'm pretty sure they would open the door and call a code red in exam room 4. The they would call the nearest coroner to come see if they should pack me on ice. All joking aside there are days like that. It's seems not only doctors but everyone questions chronic illness. I wish I could figure out why but I probably never will. I'm sure that is the biggest reason I am afraid of seeing people, the doubts of something they can't see, my reality.
I really can't say my fears have anything to do with my death because I'm ready. My fears are much different and I'm sure they would look much different if I was living a normal life. This IS my reality, my life. I'm always trying to keep one step ahead and just when I get there I'm knocked down fours steps and have to start all over to work at getting back up. This happens over, and over, and over, again. One day I'll reach the top and all the illness fears will disappear. I will win because of an open tomb and I am so very grateful for that!
"Most people do not listen with the intent to understand; they listen with the intent to reply." Steven R Covey.
"When you talk, you are only repeating what you already know, but if you listen you may learn something new." Dalai Lama
"The quieter you become the more you can hear." Rumi
"The word listen has the same letters as silent." Alfred Brendel
"One of the most sincere forms of respect is actually listening to what another has to say." Bryant H McGill
"So when you are listening to someone, attentively, then you are listening not only to the words, but also to the feeling of what is being conveyed, to the whole of it, not part of it." Jiddu Krishnamurti
"When people talk, listen completely, most people never listen." Ernest Hemingway
Smart people right there. I must say many of these quotes would have never affected me before because I was so busy trying to keep everyone else happy and trying to solve their problems I didn't have the time or the knowhow to realize the truth of these quotes or the know how to apply them.
Then Chronic illness and Hospice happened. After both events my eyes opened to the truth and I began to notice more and more the reality of the fact that people don't listen to what others say. I began to observe people and see how most people want to fix the problem, like me, or the truth that many people turn the issue around and make it about them. I also began to really think deeply about the issue of listening and realized the fact that when someone is not heard they turn off and keep things to themselves. No one wants to talk to a fixer, speaking from experience. I can spot a fixer in a second hence the reason I keep so much to myself.
I saw this truth many times in my life but one very specific time was when I was visiting a Hospice patient who had only days left to live. It was a man who wasn't very old and if he hadn't been struck with whatever illness he was hit with he may have lived another twenty years or longer. I just got done feeding him and we were sitting talking, actually he was talking and I was listening, and a friend of his walked in for a visit. The sad part for me was that after visiting the patient for a few weeks he finally trusted me enough and began to open up. In the weeks before he was very closed mouth and said, "Hi" when I came in, would eat, and say, "Goodbye" when I left and that was it. I respected that, after all he was in charge, at least the way I saw it. I knew this visit was different from the minute I walked in the room. It was almost like he knew his time was getting close because was talking much more. He had been opening up to me when this man walked in. It seemed like he was a friend but maybe not a real close friend. In the minutes before he entered the room the Hospice patient had tears in his eyes as he was talking to me and I remember looking at this man whom weeks before put on his "man" face. You know the one, I'm a man therefore I hide how I really feel, but this visit he was raw. I was so glad he finally had the chance to let it all out and trusted me enough with his pain. In walked said friend and when he walked in I could tell the patient was not happy. I could read his face as he rolled his eyes and let out a little sigh. His body language told me me the visit wasn't welcoming at all. It didn't take long for me to figure out why. In order to get this you have to put yourself in the room we were in. The patient was opening up and visibly upset about his reality, his death. The friend walks in all jolly and he begins by telling a stupid joke that wasn't even funny. He was loud and living life while the hospice patient was dying. Just what the patient didn't need, a big mouth who got to leave him and live. It was the wrong place wrong time kind of feeling. The air was so thick you could have cut it with a knife. The hospice patient looked at me with the tears in his eyes that said ""Dont leave." The visitor rambled on and on and my heart was breaking. We were both hoping the friend would leave but when he didn't I had to leave to go see other patients. I walked by his room a few times after that to see if Mr Fun had left but he hadn't, he was still talking and not listening. Unfortunately I never saw this patient after that visit. He died by the next week when I returned. I always hoped and still do that he had another volunteer or social worker or someone whom he trusted enough to open up. He had so much to talk about before his death. It seemed his friend sure didn't have the skills to just sit and listen. So very sad. A lost opportunity not only for the patient but for me and even for said friend. Once a moment to listen is gone, it's gone. The trust is broken. I remember this patient often and I remember what he taught me. I also remember the feelings and the lesson I learned from the friend which is I never want to be that kind of friend even to a stranger.
It's not easy being a good listener. There's an art to listening and being fully present for someone who in need. You cannot make it about you. Human nature has a funny way of screwing that one up.
Once you start listening, really listening, and try not to think about what you are going to say next. It gets easier the more you do it. Be in the moment and stay there not only physically but mentally. Care for someone in a true way by just listening. Embrace silent pauses they are okay. When someone is opening up to you they need that silence to process either what they just said or to process what they want to say next. Don't put words in their mouth. I've learned when I say something outloud I learn so much more from it then if I keep it to myself. Writing this blog is the best thing that ever happened to me because it helps me to process so much. Writing things down has the same affect for me as sharing what I'm going through with someone else. Sadly people don't have the skills to really listen and understand anyways so the blog serves that purpose for me. I write and no one tries to change the subject, make it about them, or shut me down with trying to fix what can't be fixed.
The next time you are in conversation with someone remember nothing says I care about you more than a listening ear. Don't try to fix the other persons problem just listen. The way you might deal with the same problem is not how someone else would deal with the same problem. Respect that.