Wednesday, July 29, 2015

Me vs The World

I woke up early today and laid in bed too cozy to get up. While I laid there motionless my mind began to process a few things about living in this body and living in my isolated world. Don't get me wrong I'm not isolated as far as people in fact I could be around people all the time if I chose to be. It's my choice that I don't. Being around people is very draining for me. All the messages my body sends to my brain is overload enough so when I add people to the mix it magnifies my fatigue. Funny because I can be around people and after a certain amount of time it is like my brain shuts off and I have to get out of the situation and regroup. Groups of people are the worst. It's sad really because most of the world thrives in groups. 

I believe, for myself at least, that being chronically ill is like being in a boxing or wrestling ring. You are knocked down but you get back up to fight again. You bounce off the roped in sides and get thrown right back into the middle of the ring for more. You might be beaten down but you continue to get back in the ring. You sit in a corner to rest and get a motivational speech, from yourself of course, and then jump back into life, you're ring. Just like some of the boxers or wrestlers after they have been beaten up badly and probably want to stop you realize you must go on to the end. I was reminded of this as I was talking with someone this weekend who asked me how I was doing. A person whom every time I see them they ask me how I am. They never ask in the crowd but always at some point when we are alone. I told him I was doing ok which is usually my generic answer. I feel like it is one of those in the middle answers, a not great but not horrible answer either. Then he said it's hard getting old but caught himself and said, "But your not old." I said, "No I'm not." Thinking to myself I sure do feel old. I told him it's been almost ten years in which he was shocked it had been that long. I have been thinking about this for a few days realizing it really has been ten years. I can hardly believe that I have been dealing with this for so long. Truthfully it has been twenty five years but ten under a rheumatologist care. I begin to wonder how much life I have lost in all that time. A lot. But then when I think about it I have also gained a lot of life. Eyes wide open I have learned so much about myself, many things I loved learning others things not so much. I have learned a lot about other people good, bad, and some very ugly. I've had the time to process so much and for that I am thankful.

Whenever I get out in the world and see people I also get the dreaded question, "What have you been doing?" In my head the answer is, "Surviving," but I never say that out loud. What comes out of my mouth is some sort of answer filled with jumbled words that make no sense because I don't know what to say. I almost feel personally attacked when I am asked that question. A sort of guilt I put on myself. Its funny because I have to choose my words wisely. If I say I'm good people take it as I'm normal and then I get the usual response that we need to get together or that I need to come over to visit them. No, my good is not your good. My good is I got out of bed today and I am here. That's it for my day. It isn't like I got out of bed ran ten errands, did laundry, prepared food, etc and now I'm here. No. I got out of bed , got dressed, and I'm here. This is another reason isolation is so much easier for me. The problem is I have always been a giver and I think people think that I am still that person but I'm not. Far, far from it. I have finally realized it is okay for me to take care of me instead of making everyone else's life easier. I'm good with it but it sure would be easier if people could respect me enough to quit expecting me to make their life easier and do what they think I should do. I'm not doing it anymore. It feels really good to finally be here. Of course none of this applies to my family because my extra energy goes to them and that is exactly where my energy needs to go whether people want to understand that or not. I'm not going to apologize to people who think I need to be there for them who in turn they are never there for me. I'm over that. Life has to be lived and one thing I have learned is we cannot expect others to make our lives easier that is up to each of us as an individual. I hope this is coming across the right way and not in a selfish way. Another hard part of chronic illness is trying to explain the unexplainable of living this life.

In all of this writing as in all of my blog entries I don't write to make anyone upset but to hopefully give the normal world an idea of what it is like to be sick all the time. Most chronics live a good life. We are active. We love our families and we push on but it just looks a little different than the rest of the world. It is my hope that the next time you see someone with a chronic illness you will treat them like anyone else but maybe have a little more compassion and think before you speak. For many of us we have lived like this for so long most comments roll off our backs but every once in a while a conversation ignites something in our head and forces us to think deeply. Bad thing? No! Thinking deeply to oneself helps us grow. It helps us get closer to the acceptance we need to get to so for that I am grateful for the comments. I hope you can be grateful for the comments directed toward you too.

God Bless!


Tuesday, July 21, 2015

My Dark Passenger

One of my favorite shows of all time is a series that ran on Showtime a few years back. Dexter is now running on Netflix and I have watched all eight seasons more than once. It's one of those shows I just can't get enough of. If you have never watched or heard of it the show is about a serial killer who works as a blood splatter specialist for Miami Metro. He has a code and only kills those who have killed others which for some odd reason makes his killing okay in my head. Dexter calls his need to kill his dark passenger because the need is always there following him everywhere he goes. Last week I finished watching all eight seasons once again which got me thinking about not only Dexters dark passenger but also about mine. The more I thought about it I realized I have a dark passenger too. Granted my dark passenger is not one that wants to kill but one that affects every aspect of my life. My chronic illness is my dark passenger. There is no escape from my dark passenger because it follows me everywhere. It's funny because I always look forward to going to bed, the time of day I take a few meds to help me sleep in hopes that I will be able to escape all my body puts me through. The funny part is the escape rarely happens as sleep is never easy so I wonder if it is just the idea of the escape. There is no escape from a dark passenger.

The other day I had another huge breakthrough as I was slapped in the face with the reality that my dark passenger makes me really angry at times. Since I went back on meds again the mind games have been brutal. The symptom control is improving but the thought process of being back on drugs is stressful for some reason. It's strange how going on a treatment plan makes you feel weak in an odd sort of way. When you are a strong willed stubborn person it is hard to admit you need the help. I feel like I am right back at the beginning nine years ago. My anger and denial are running strong which also leads me to realize when I get mad I blame other people who shouldn't be blamed. Rich for one. I know I have been short with him and so mad about the drugs that he gets the blame. Last weekend when I realized this I apologized and pulled back and told myself I must work on this. It's odd how it is so easy to blame the ones we love the most for the things they have no control over. It's odd how I define myself as bitchy but he says he doesn't really notice. The ah hah is that I have to go inward and take the blame and work on the acceptance once again. I truly thought I was there but I guess not. I wonder if I ever will be totally excepting. All I know is being aware of where I am now will help lead me into the future. I don't think there is much more to say about that except the old saying of one day at a time or as I like to say one minute at a time.

Illness is not only a physical and mental job but it is a inward job, a soul job, your being, and your well being. Working on the unknown is the hardest part but then many other people deal with this on so many levels too. In one way or another we all have a dark passenger we have to deal with. The biggest part is realizing you have the dark passenger and working on walking side by side and not against it is huge. How do you do that? If you know let me know and when I figure it out I'll let you know. In the meantime we press on, hope, and do the best we can with our dark passenger.

God Bless!


Thursday, July 9, 2015

Medication Roulette.

I saw my Rheumatologist today and we discussed all the side effects I was having from the methotrexate injections. After talking for a few minutes we decided it is time to try a new medication. I have not tried this new med in the past so I have no idea the reaction my body will have but I am willing to take a chance and see if this is going to be the one. The one. What does that even mean? It has been not only physically draining for me the past few months but also emotionally stressful. Even though I am having some symptom control the side effects are another story. Symptom control but at what cost? The one. I would hope the one means that the side effects are not too debilitating. You think that when you start on a new treatment it is going to somehow magically change your life and the illness will magically disappear and life will be like it use to be. Well that doesn't happen and it tears you apart mentally. Medications give you relief but not a cure. I have been down in the dumps and gaining weight because the reality that this is going to go away fades every time I start a new treatment. It seems I go in and out of accepting this illness thing and the sadness of knowing this is what it is. If that makes and sense at all. Chronic illness doesn't make any sense, that's the problem. You push on, you hope, you do the best you can but it still has a funnny way of wearing on you. Now the uncertainty of a new drug is more mentally challenging. The what if's. The what if this one questions that run through my head. I'm going to keep an open mind on this and be thankful I am done with the methotrexate. What a blessing. My body hates that drug with a passion and to know that I don't need to take that ever again is a relief. You know it's bad when your husband even says that it isn't worth it to stay on it. The new drug I'm starting is called Leflunomide and it is a tablet so not more shots either. Yay! The doc said the two major side effects are diarrhea and hair loss. Just what a hairstylist with IBS wants to hear. Ha! Cracks me up how ironic life can be sometimes. It's all got to be some kind of sick joke I'm convinced of that now. I'm glad I have natural curly hair that makes it look thicker than it is and I'm really glad for Imodium. See there is a positive side to all that negative self talk after all. The next thing is working on my eating habits. My stress eating caught up with me when I stepped on the scale and gained seven pounds in eight weeks. What the heck? I just have to laugh but I also know I need to pull it back together and quit this emotional eating or I'm going to end up in deep trouble. This weekend I'm definelty working on a plan and quitting the emotional eating. One step at a time that is for sure. I took one of the new pills a few hours ago and all I can say right now is so far so good. I am hopeful this will be the one!

God Bless!


Thursday, July 2, 2015

I Guess It's Real Now

It has been eight weeks since I began treating my arthritis and sjogrens. Again. It has been a hard eight weeks waiting for my body to adjust to the methotrexate. I am not like most people when it comes to drugs. My body doesn't adjust well and I always have the worst side effects possible. This runs in the family so it is not just me. The side effects were the main reason I stopped treatment the last time because they were just to brutal and begin to break me down. I called my doctor Monday to ask if there was another treatment I could try since I know there are more available. He suggested I decrease the dosage and bit and next week at my appointment we will talk about where we will go from there. Tonight is shot night and I am not looking forward to it at all but I will still do it. The treatment is making a difference as far as symptoms. I am getting better days so I am happy for that. 

When it comes to treatment that involves injections you have to dispose of the needles properly which means a sharps box. The health department provides these free of charge. I knew I needed to stop for a sharps box but I have been putting it off for eight weeks and keeping the needles in a another box until I made it to the health department. I knew I needed to go but I really didn't want to. In some odd way doing something as simple as stopping for the box means you are giving into this illness. It is like a mind game in some odd way. Stopping for the box means it's real, it's really happening, again. It's like you lose a little control over the illness and have to admit you need help. It probably doesn't make any sense at all but to me it is so real and honestly I hate it. Just when I think I have accepted this illness crap something as stupid as adding a medication or picking up a sharps box sends me into a tailspin. I have to ground myself and again and remind myself it's okay even if I don't want it to be.

Once again I am back to trying to accept this as my life and coming to terms with the fact that this is what I get for the rest of my days. It isn't easy. I still believe that people think, or at least I did, that illness is all physical but it is so much more. The physical part is the easy part but the head games can be brutal. A stupid sharps box for example. In all honesty I'm glad I finally stopped for the box because now I can move on. The weeks I didn't pick up the box wore on me because I knew I had to. But now that I picked up the box and have it here it is over. I did it. Good for me! It makes it easier once you face things instead of always putting them on the shelf. If we deal we can move on. So now I can check that off my mental list and begin to realize and accept its okay to be back on the drugs. Moving on is the most important part of this reality. I am! I think?

God Bless!