Thursday, May 26, 2016

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

Wednesday, May 11, 2016

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

Tuesday, May 3, 2016

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