It's A Beautiful Day

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!

God Bless!

Dianne

The Best Medicine

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. 

God Bless!

Dianne

Poked Drained Shot Up Moving On

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!

God Bless!

Dianne

Here we go again

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.

God Bless!

Dianne

He Can't

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 gotta go there's a puzzle waiting for me.

God Bless!

Dianne

Chronic Whirlwind

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.

God Bless!

Dianne

Zebra/Round Three

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!

God Bless!

Dianne