Saturday, November 19, 2016

The Waiting Game

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.

God Bless!

Dianne

Wednesday, November 9, 2016

The Lie of Strength

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?

God Bless!

Dianne

Tuesday, November 1, 2016

I Don't Care

 
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.

God Bless!

Dianne