Chaos and Gratitude.

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Sometimes words come so easy, and sometimes finding the right ones is so very difficult. I know how I want to express myself but yet it still seems so difficult to do, and part of me doesn't want to. But Kevin tells me it's important to do so, and it's important to share. He reminds me that constantly. Right now I feel a little disconnected from myself, and that's been making it harder for me to write, and to properly express myself verbally, or through my writing. So I need to work on that.

The past couple of years have been difficult, and full of ups and downs health wise for me. It's been a long journey, as most of you know, but I have traveled very far. It's been challenging sure, and I've had a lot of pain, some big surgeries. But nothing compares to the past 4 months.

And certainly nothing compares to the past couple of weeks.

On July 4th, I almost died. It's difficult to think about it in that way, because while I don't fear death, I certainly am not ready to leave this life, and the people and animals in it whom I love. I've always been well aware that life and death walk hand in hand and that things can change at any given second. I learned that very early in my life as illness and death touched everyone I loved very early on. But I've never come that close to it myself, nor did I expect to right now.

Our trip to Michigan went well mostly, our drive was long but Kevin handled moving the 5th wheel for the first time in a few years well, and I held up for the trip. We were able to both enjoy his family reunion and some time with his family, which was really nice. Saturday morning I knew it would be a bad day for me, I have them often and I either get through them or end up in the hospital, but generally through a lot of suffering, I've been getting through them. I'm used to high levels of pain and at first wasn't alarmed. I even told Kevin to leave me at the 5th wheel and to go on to the party that was to take place with family that afternoon without me. I felt terrible we couldn't go and honestly, I've suffered through a lot of these episodes leading up to my hospitalization in April and diagnosis with inflammatory bowel disease so I thought I could get through another rough day, and that really, that's all there was to be done.

But of course, he didn't, and wouldn't leave me alone. And actually quite quickly I realized the pain was not just bad, it was brutal. It was killing me.

Because I try to tough things out and because I've had bad experiences at hospitals, it takes a lot to make me go to the hospital, and I mean, a lot. When I give in, I'm either in horrible pain or afraid. I was both this time, thankfully. If I hadn't been, or if I had hesitated as usual, things could have turned out very differently.

Thankfully we were fairly close to the hospital in Sault Ste. Marie, Michigan from our camp site, and Kevin drove through 3 or 4 red lights and broke every traffic law there was, but we got there quickly. And thankfully, the entire staff at that hospital was the best we've ever encountered anywhere. They acted fast, and aggressively, but they were all kind and considerate towards me at the exact same time, all of them. It was hard to believe everyone could be that good and that on their game but they were. They quickly got my pain down so they could figure out what was happening and quickly we learned I had a bowel obstruction caused by the severity of the inflammation caused by my Ulcerative Colitis. Before we left for this trip, I had still not been approved for new medications so I was only taking prednisone still and obviously, not enough. I was in a lot of pain and terribly distended and because of the weakening to my colon from the inflammation and ulcers, I was close to rupturing, so the Doctor immediately had a NG tube put in.

Nasogastric intubation is a medical process involving the insertion of a plastic tube (nasogastric tube or NG tube) through the nose, past the throat, and down into the stomachOrogastric intubation is a similar process involving the insertion of a plastic tube (orogastric tube) through the mouth, past the throat, and down into the stomach.

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It wasn't fun, and it was a big tube, but once in, I did have immediate relief from the pressure in my abdomen which felt like it was going to burst wide open. 

We were all relieved for a few moments until I got up to go to the bathroom. On my way back to my bed I remember saying out loud, "suddenly I don't feel so good." and after that, a lot of chaos took place as my blood pressure suddenly shot up to 180/180 and then over 200. My organs were about to shut down, and the Doctor thought I had stroked, or was having a serious reaction to one of the medications they gave me. We don't know what happened for sure. But I do know without the staff at that hospital and the way they responded to it, I wouldn't be writing this. 

The nurses stayed with me all night, giving me constant medications to try and get my blood pressure down (it took until the next afternoon to do so) and giving me prednisone and anti inflammatory medications through my IV port. They sat with me. My body and organs were having a hard time functioning normally so they constantly were managing that to keep things from getting worse. They responded immediately when I got sick, and they kept me out of pain. I was in and out of consciousness a lot but at one point, I remember the nurse opening the curtains for me so I could watch the fireworks, and she even drug my bed down so I could see them better. 

It was pretty surreal, being that sick, starring out the window at the fireworks going off in the sky. I was not afraid, I was too medicated to really understand or think, but I remember my eyes opening and closing, and seeing those fireworks, and locking that image in my mind. 

This was pretty hard on us, on me, but also on Kevin. I for one, never saw it coming. I know very well that I am sick, but I sure did not expect this.


Once I was released from the hospital we stayed in the Soo a few more days to make sure it was safe to leave in case I needed to go back to the hospital. We managed to get home late Wednesday night after a very long drive. 

On Friday, were able to pick up my Humira and I gave myself the loading dose of 4 shots.

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I have never given myself injections before, although of course I've given lots of needles to animals. But still, injecting yourself four times was a little daunting - especially when it's new... once you know what to expect it's a whole different story. The needles do not hurt at all, but the medicine does burn terribly which I didn't expect - although I had been told by a friends young son who has Crohns that Humira burns more than other medicines... thankfully I had forgotten that.

So I started my first injections of Humira, and also Imuran which is an Immune Suppressant, and I am still on prednisone and 4 other medications. It's a lot. But I'm hopeful the Humira and Imuran will help and that I'll be able to begin to taper my prednisone. I also hope all these medications are telling my immune system to cool it - and thus allowing the inflammation to cool it as well. I can only eat certain foods and I continue to be very careful to do all I can to not aggravate the situation. I have a long road ahead of me, but I'm grateful to still be here to walk it. 

The prednisone of course is hard on your body and it has given me a false sense of energy, that I'm better than I think. I am always reminded that's not true, but it sure makes you feel like you can do a lot when you really can't. I'm pretty hyper normally, but the prednisone gives you a false sense of it, so I've been trying to do a lot of things. And of course I am going a little crazy not being able to do anything but rest. But I have been trying to focus on projects I can do while resting, like knitting, or reading, painting, etc.

 The prednisone is also is making light so painful to my eyes I wear glasses you wear after having your eyes dialated and when I forget to, even when there is no sun or I'm in a darker room, the pain behind my eyes is so intense it feels like my eye balls will come out and there is no way to make it better other than to sit in the dark, or try to sleep. Anyone who's taken prednisone knows it can be and is a life saver but it's like making a deal with the devil. 

So far I have not noticed any improvements on the Humira and Imuran but it's very early (days in) and it's not magic. It takes time. I am very glad however that so far, I've had no obvious side effects from them and they have not made me feel unwell at all, which is great. But it's one day at a time. Moment by moment. 

I do feel positive, committed, hopeful. I know I am going in the right direction although I have no idea how long it's going to take me to find balance again, I have to trust it will come when the time is right, and I'm trying to stay focused on the good, and there is much of it.

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The animals are all happy and well and enjoying their summer pasture, which makes my heart smile.

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We have had an abundance of clover and wild flowers this year...

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I've been trying to take short trips to visit with the animals, or just be outside for a bit. Of course they are the best therapy one can get. I read something on Facebook recently that said "The best medicine is a dog who thinks their love can heal you." And it's one of the truest things I've ever read.

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I've been trying to collect as much red clover as I can as well because it's time to harvest and dry it to use in teas and ointments later. It's good for everyone, animal and human. The goats only want to eat it if I pick it for them... that's spoiled.

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The bugs have been terrible, but today we are enjoying a cooler, breezy day, and that's helping keep the bugs down a lot, which everyone appreciates.

Kevin is busy getting the haying equipment ready as it's time to cut hay if the weather holds. Our fields are green but not very high this year, which seems to be the norm around these parts, so I'm not sure how good our harvest will be. Hopefully better than expected.

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The boys of course have not left my side, and are doing their very best to keep me resting.

I'm grateful to be taking small steps, and trying to allow my body time to catch up, rest, heal, and allow the medication to work. I really want to be haying, hiking in the forest, trimming goat hooves. Things have to wait, I know, and everyone is fine. I am hopeful that time will come, but I know I need to work extra hard to be kind to my body, it's very easy to take it for granted or just try to push it.

Such a weird time it is. My mind and body is full of chaos and gratitude. I feel very confident, very hopeful, but very confused. Such a mix of emotions, a mix of extremes. Balance I know will come again in time, and I look forward to it, and the comfort it brings. The consistency.

But there is much to be learned in chaos if you are willing to do so.

I read a great story recently about two trees, both damaged and cut by a raging river. One tree was nearly destroyed by the constant pounding of the river, and was nearly dead. The other tree, while damaged, had started to bend, and curve away from the river, it also was healing at the damaged parts, not dying.

Two trees, the same damage, the same situation, but two different responses.

I remind myself of this often. During times of chaos, or great challenges, we can grow, we can bend, we can adapt. Or we can be destroyed.

Sure many things come into play to help shape and decide how we as individuals handle challenges in our lives. But ultimately, at the very root, it's so very basic, and it is up to us to grow, or to give in.

Always choose growth. No matter how painful it might be.

You will heal. 

Comments

edenhills said…
Oh my. what a journey. I'm so glad you made it to the hospital and got the help you need. Healing energies to you.
Your beautiful words are full of gratitude.
thank you,,, we wish you well
love
tweedles
Terra said…
Yes, you will heal. Amen, you have a strong spirit.
Ian H said…
Glad you are still with us! Good folks are hard to come by. Would you mind if I do some praying for your return to full health?
Bobbi D. said…
so sorry. I hope this new medicine works for you without very many side effects. I will keep praying for you. Glad you are getting there. :)
The JR said…
I don't know what to say. How horrible that you got that sick. I'm glad you are better. I'm still praying you get well.

O'Quilts said…
Horrible to suffer so. You have been trying so hard for so long and deserve to be better...sending love from Charlotte, North Carolina
Glad you posted!
Mark Kimel said…
My thoughts and prayers going up for the both of you my friends. May our Lord's healing hand lay upon you and make you whole.
Mark (Carolinablue)
k said…
Sending healing thoughts your way. Your strength and spirit are inspiring.
Dee said…
I feel compelled to talk to you. I was recently diagnosed with crohns, ulcerative colitis, diverticulosis (sp) and some sort of immune disease -- no where as serious as yours. But you are not alone - I understand some of your pain. The doctor prescribed 2 weeks of enemas that absorbs in my colon - and two lialda pills. Then they upped the lialda and I had an allergic reaction that set me back to square one. I am now doing better and finally ate some solid food yesterday and had no reaction, thank God. If you want to correspond with me, I would be glad to talk with you. I will pray for you as I pray for self. It is rough stuff but what you are going through makes mine look easy.
Anonymous said…
Dear Donna, I was just introduced to your blog from another blogger and really love it. So sorry for your health issues. I too have an inflammatory bowel disease, microscopic colitis, and many things can set off a flare up for me but never as bad as yours. I am also so sorry to hear that your husband has passed away. What a terrible loss. My prayers and thoughts are with you.Nannie

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