Wednesday, June 29, 2016

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!


Tuesday, June 14, 2016

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!


Thursday, June 2, 2016

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 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!