Unfortunately I'm in so much pain right now, I have to change most of my plans for the summer. Everything is on hold until we can hopefully get me some help. We had been planning on building new raised beds in the garden, doing some traveling, getting a lot done around the house, but the truth is because all my pain is in my abdomen and pelvic area, bending puts me in horrible pain, sitting hurts, it's a long mess of troubles that means we are going to have to focus our gardening to my pots (we have almost 100 of them) row crops in the garden (the corn, peas, onions, beans, potatoes) and fixing up the two existing raised beds I have. We'll still be growing a ton of food, just in a different way than I had planned. We had hoped to put 4-6 new raised beds in.
And then everything else is on hold. We live day by day, wait for appointments. My normal routine right now is to get up and do my animal chores and then see if I have anything left. Usually I lie down for a few hours. I almost always force myself to do more chores, some tidying up, cooking, laundry, etc.. but I am forcing myself. I always feel the complications of my activities. Picking dandelions for wine put me in extra pain for two days. But I was not about to miss out on making dandelion wine.
Our main goal this summer is to find me help, relief. The disease I have is a complicated one that likely won't kill me (although it can turn to cancer at times) but is putting me in so much misery the only reason I'm functioning right now is because I have to take care of the animals, and because I'm not about to give up my whole life (although it's taken a lot) to this stupid disease. I refuse. Doctors are not helpful. I have had four surgeries and I have refused the drugs they are offered that cause life altering side effects that don't go away when you stop the medications (and these medications only work for a short time if at all, so the benefits in no way outweigh the risks). I can't do that to myself. They have offered little to no pain support, and they just keep sending me for tests when they already know what is wrong. And the reality of this is, for the problem I have in the Country I live in, we have very limited means of "managing" it because of cost. It takes months (16 months to see a pain specialist) to see Doctors and for surgery you can wait over a year. To see my regular Doctor it takes 3 weeks to a month for an appointment. It's very difficult to get help.
I have more tests scheduled and I have been seeing 5 different Doctors in all different places. It's exhausting, for me, and for Kevin. It's not just the physical toll of the illness, it's a struggle emotionally, but I am so lucky to have such a good support system at home between the animals and Kevin, and good friends. A lot of women with this disease I have are unable to work, and have no support, so I am so grateful I have a safe place to call home, and someone who loves me enough to stand by me. Illness, especially long term or chronic illness no matter what the kind, is very hard on peoples relationships, friendships, and it really brings out the best or worst characteristics in the people around you, and in yourself.
Many days I have come in from chores and had to cry, because everything I do makes the pain worse. And the pain at times causes me to become a little shocked at it's location and intensity. The way I stay sane is through the animals, through making bread, through being as productive as I can. Otherwise I'd just go cry in a corner all day long and that's not productive at all, either physically or mentally. But it's a huge battle. So many times I have fluffed up how much pain I am in or how much I struggle to my family and friends and people around me, because I don't want to complain, I don't want to dwell on what's happening. I don't have cancer, many people are much more sick than I am and suffer more. But sometimes I have to acknowledge that this is taking a huge toll on me.
But not such a huge toll that I am backing down and not going to stand up for myself.
There have been times in dealing with this that I have come to feel like this disease is playing such a major starring role in the movie that is my life, and I don't want it to be, I want it to have a very small cameo, that it doesn't even get paid for. That's how I want to look back at this someday. Hopefully. Many times it's felt hopeless, I've been told this will be my life and I'll need to live with it.
But I do have hope, one very big, very difficult to attain hope... but if the stars align, then this current battle I'm fighting will be won, by me, not it.
This blog is a place to share mostly the happy things in my life, the animals, the farm, recipes, projects and stories with all of you. I'm grateful for it, grateful to be able to share it and grateful that you all read along and enjoy it. I've made some wonderful friends through this blog and reading some of your blogs always is a bright spot in my day.
I'm sharing this not be sad, but because this is my reality right now and part of my journey. But also because although the light at the end of the tunnel is still faint, I can see it. And I so hope to be writing at some point to all of you, that the light is so close I need to cover my eyes to shield them from the brightness.