Moving forward from here...

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First of all, Thank you all so very much for your love and support in regards to my last post. It means the world to me, and definitely helps inspire me to keep going forward. 

I've thought a lot about how much to share if anything about my current struggles with health. Is it too personal, too big of an issue, what do I say, how much? A few people commented saying that they actually appreciated that I had been honest about this, and many people have wondered what has been going on with me, health wise. So I decided, sharing isn't all that bad... 

There was a while, over this past winter when I began to think I'd have to give up my entire way of life because of this. I had no way out. Such limited options. But now at least while there is no quick fix to my problems, I do have one hope in mind. 

I actually sat in my Doctors office a couple of months ago crying, telling her the pain was getting worse and I couldn't understand it. I don't cry in front of Doctors. Or people. She told me to think more positively and that I wouldn't notice the pain so much. I've heard many things like this from Doctors and it gets very difficult to not be completely discouraged and loose all faith you'll have any sort of quality of life ever again.

The hope I have lies all the way in Atlanta Georgia. 

A lot of you asked, and the disease I have is endometriosis. It's something a lot of women deal with, some don't even know they have it and for other women it completely destroys their lives. Endometriosis is where the lining of your uterus for some reason, grows in other areas of your body...  and it can cause all kinds of problems. It basically sews your organs together, creates a lot of inflammation and pain and it can affect your other organs which is what it has done to me. There are a lot of things involved, and it's greatly damaged my bladder. It's a hard disease to manage. Hysterectomy was always the last resort for this disease but when women continued to have pain after, Doctors found that even with ovary removal (estrogen feeds endometriosis) the endometriosis still grows because it actually starts creating it's own estrogen. It's like a parasite, really. And one that most Doctors do not understand all that well. There is no cure.

Three times they have cauterized my endometriosis through surgery, but this is a very short term fix because they are only able to burn off the tops of implants leaving most of the disease behind... so it just grows back. They also cannot remove any of the endometriosis that is on your bladder, or inside your other organs, or that's microscopic at the time of surgery and they cannot see. I've had surgery to remove most of my reproductive organs, and now the pain is actually worse than before. The Doctors are testing me now to see if I have a bladder disease or if I have endometriosis inside my bladder causing major bladder issues, but that's just a small part of the over all pain. 

I've tried alternative therapies and no pain medication has offered relief. For many women they are told to live with it. A lot of women take hormones that throw them into menopause, or testosterone. These medications cause horrible side effects that are not reversible. It's frightening. They also don't usually even help offer any pain relief.

But in the U.S. there is a very small handful of Doctors who do a very special kind of surgery for endometriosis, it's called excision. And these Doctor's who specialize in this disease admit, surgical removal is the only way to find long term pain relief. Because they actually cut out all the disease and all the surrounding tissue, this surgery offers 90% or better chance you will be pain free, at least from the endometriosis pain. It's very delicate work, since they are removing the disease off of your other organs and from inside of them, so there are so few Doctors that do it. There are about 10 in all of the United States. In Canada we don't do this surgery - one reason is lack of specialists, another is cost because of our health care system. They won't pay for it. Often during this surgery they need to remove part of your bladder, your bowel, and do other repairs to try and correct some of the damage that has been done by the endometriosis lesions. 

There have been many articles in newspapers from B.C. to Ontario in the past couple of years from women trying desperately to get this surgery in the U.S. so they can have their life back without excruciating pain. I won't describe my pain, but it's bad enough that many times even though I knew I probably wouldn't die, I wanted to. 

But I live with it, and I manage it... until about 5 months ago. The pain became worse than ever, never going away, and bringing on new and more painful symptoms. When I bend or lift anything, my stomach actually distends to that of a woman who is 6 -7 months pregnant. You can imagine the pain from that symptom alone. I have chronic pelvic pain, chronic inflammation of my bladder and pain, and my whole abdominal area. And that's what has brought me to where I am now. But I am a Canadian, and going to the U.S. for surgery is not an easy task. I have no insurance, and I cannot afford to pay for the surgery out of pocket. I have one hope, because Kevin is a retired military officer (from the U.S. Coast Guard) he has TriCare and as his wife, I also have access to TriCare but because I am not an American Citizen, it's complicated, but if we are able to get through all the hoops in front of us, I should be able to get 75-80% coverage, which will help greatly because while we'll still have to pay a considerable sum depending on the final costs of surgery, it will be considerably less than if we had to pay for the entire surgery out of pocket. If for some reason we are left to pay for the entire surgery out of pocket, we are not ruling that out either. Although it would make a huge impact on our life for the future, it may be my only chance at a future with any quality of life. I find that I have a fairly good tolerance for pain, I have been through a lot of pain over the past 8 years with this disease, most of it in the past 5 years. A lot of women describe some of the pain like giving birth repeatedly, others like passing kidney stones every single day. I've never done either of those things so I can't compare, but it's not the kind of pain you just ignore and push through without having much effect on your body or state of mind. 

Fatigue is a major symptom but hasn't really slowed me down until recently. Because of the increase in pain and swelling I've had in the past few months, fatigue has been affecting me more. It's hard to get out of bed in the morning, but I do, but everything I do takes considerable effort and it shouldn't. I'm young and I'm otherwise healthy, but my body is just so worn out.

But I'm working through it, I'm staying strong, and just having hope that there is a way to find real relief from this is very motivating. In a few weeks I get to have another cystoscopy which is one of my least favorite procedures... it's unpleasant for anyone, but because my bladder is in pain, this test really brings on a bad time for me. 

However miserable this is, I have much to fight for, and am grateful for it. The biggest thing women with this disease lack is a support system. They can't work, it destroys relationships for many reasons, and a lot of people just can't understand. It also feels pretty hopeless for a lot of people when you are being offered so few ways of dealing with it, and a lot of those ways bring on whole new symptoms and problems. I'm lucky in this way - it's impacted my relationships a lot, it's impacted my life a lot, but my foundation is good, and it stands strong. 

And basically, I'll be damned if I'm not going to milk my goat or grow my garden. One thing about me is I'm stubborn as a mule, and it can be a good thing and also a bad thing, probably a very annoying thing for some people... like Kevin for instance. I know that might sound nuts, and a lot of people feel like I'm pushing myself too hard and I probably am. I've given up a lot because of my limitations but I won't give everything up. It's part of staying strong - if I just surrendered it would win. Just like any chronic illness, you can't surrender to it. You adapt and you try to move forward in improving your quality of life, or finding a cure. But you don't just give up. That's the worst thing you can do. I used to be able to carry two 45 pound square bales of hay. Now, picking up Douglas, who weighs 14 pounds causes problems for me. So I avoid lifting. I have to ask for help a lot, I can't do a lot of things I want to. But for most things I adjust what I'm doing. I take a lot of breaks, which helps a lot. I wear sundresses because I can't even tolerate wearing pants 3 sizes too big for me most days. I carry my heating pad around with me. I swell up from too much walking, so I can't do all my grocery shopping at one time. I adapt. And hopefully in time, this won't be my reality anymore and I'll have more of myself back. 

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Yesterday evening, Izzie went off to her new home. I made this decision over two months ago and found her a new home about 3 weeks ago. Many animals come to me when they are weak or in need, and I try my best to save them, to raise them, and care for them. But the truth is, not all are meant to stay here forever. That became the case with Izzie. I've known for a while that she would be better suited in a different home but it was a very painful decision for me. I love that cow. I raised that cow, and she's my responsibility. I cannot tell you how many sleepless nights I've had because of this, how many tears I shed. My animals are not really farm animals, not in my eyes. They are my family and my responsibility. They rely on me, and I do whatever I can to not fail them in any way.

But as painful as it was coming to this decision, deep in my heart I knew it was right. I had quite a lot of interest her, a lot of it by people who were not quite serious enough or whom didn't have a good enough home in my opinion for her. The family who adopted her have an autistic son who loves animals, they have plenty of land, and plenty of love to offer her. And there's a good chance she'll soon have other cow friends which is something she'd love and had been looking for. She'll be fine. When we finally loaded her in the trailer last night, instead of the overwhelming feeling of grief I expected to feel, I felt nothing but relief. But peace. I saved her, raised her, loved her, and we've given her a good life. Now, her new family will love her and take good care of her, and my family, my herd... the balance that has been missing from it lately, has completely returned.

Afterwards Kevin took me out for a ride in the mule (atv) so we could enjoy the sunset and see how green everything was becoming. And we were treated to some beautiful sights and even visits from a couple of our friends...

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Our apple trees are all in bloom. It's one of my favorite things in the whole world. And much to our surprise when we stopped to take a picture of one of the trees behind the house, a deer got up from where he was lying down near the apple tree...

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It was our orphan buck fawn. 

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He looks to be in good shape, and he's lying near the house for security, which is good. He wasn't even remotely worried about us.

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He was more interested in when the apples would show up... I hated to tell him he'd have to wait a little while yet..

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And just up the road, with the house still in sight we found a porcupine too...

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We had to go in for a closer look, Porcupines are so adorable (except for when they quill your dog.)

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See, just look at that face! 

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Hi Pal! Don't worry about us, just saying how adorable you are... 

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It's so magical watching the forest wake up, everyone enjoys these spring evenings...

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The wild strawberries have flowered too! This means in about 2 weeks I should have berries. It's difficult to get wild strawberries because they are a much sought after treat by many critters in the forest, many of whom keep a better eye on them than me even. But a wild strawberry, although small, has a taste 10x stronger than a tame strawberry. They are incredible. I always have big dreams about how many I'll pick, but if I manage a handful, I'd be happy. 

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The apple trees are all full of blossoms, which gives me great hope we may have a good crop of apples this fall. It's been cold this week, very cold, but the blossoms have survived and hopefully they will not get hit by frost. Two years in a row now they have, and it's really hurt our apples. 

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All the trees are still busy dropping seeds and trying to populate the forest with more of their offspring.

And then we came home to tend to the chickens on the roof... 

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La vita รจ bella. Life really is beautiful. In all it's phases, all it's days, all it's emotions, and seasons. 

Comments

wranglerkate said…
God bless you in your quest for answers and the right treatment. I hope you find both. Your stubbornness means you have inner strength, so draw on that. And that doctor who said not to think about it and it won't hurt so much sounds like an idiot. Right now is the time for you to take care of you. So do that. And let us know how things are going!! You will have lots of prayers and well wishes going your way . . . .
Lana88 said…
As I read your posts up until now, I wondered if endometriosis or something similar was not to blame. As someone who has worked in the medical field, I know the effects of this frustrating disease. But keep being stubborn, my dear blogger friend!! I do believe there is great hope ahead for you to overcome this and to reign over it victoriously, and we all can't wait to embark with you on your journey to stamp it out. I pray that you insurance troubles get worked out and that you will be able to get assistance in paying for the procedure.

Love the deer... when I was a child, we raised two orphaned doelings for about a year. They were the most precious things! When they got old enough, we had to send them to a wildlife refuge so they would not be shot by hunters (they were very friendly)! Deer have a special place in my heart because of that. We actually do hunt ourselves, but I love to watch deer and admire them all the same.

Hope you get some relief soon. And come on apples, grow!!
jaz@octoberfarm said…
i know little about endometriosis but will read about it. i am so sorry you are in so much pain. i was so surprised to hear about izzie but i now you never make these decisions easily! i so hope you can eventually get some relief from your pain! i have never seen a porcupine so close up but they sure are cute! i wish you so much luck in the future!
Doctors who give that type of advice usually have never been through that type of pain. They simply can't fathom what you must be going through. Good for you trying to live your life the way you want and to the fullest. Sorry to read about Izzie. A decision like that is so very painful. I must say that the photos of the chickens on the roof are a riot.
Hugs to you.
Primitive Stars said…
Evening, I do hope you find relief for you pain, your stubbornness is a good thing, keeps you going......Hard decision to give Issie up but you have to do what's best.......love all the wildlife around, sweet deer and porcupine.....great pictures, Blessings Francine.
Liane said…
I really enjoy reading your blog, I look forward to every new blog post! I'm so glad you finally shared what was causing you so much grief, and I'm hoping that this will finally help you find a solution. We've never met, but I find you very inspiring. I too suffer from severe menstrual pain which no drugs will help. I too always have a heating pad close by! Obviously the Universe has intended for us to learn something very important from this pain, but it's a hard pill to swallow. I hope you know you have people everywhere who care about you and love you! Sending healing thoughts from British Columbia.
Dewena Callis said…
You have been on my mind and in my prayers since reading your last post. Now I can understand more of what you're experiencing. For years I questioned my doctor about whether I had endometriosis and he said no over and over. Then when I was 50 and in so much pain they ran tests and did emergency C-section on me thinking I had ovarian cancer. A very hard time. But guess what? It wasn't ovarian cancer, it was the worst case of endometriosis he'd ever seen. And yes, it was all over my organs and they tried to remove as much as they could. I did not go on hormones after as he said if I did it would continue to grow. I have never had any problem that I know of since then, although it took 6 months before I felt good and I was given the unwanted gift of insomnia because of the hormonal thing. That's okay. I can live with that.

But I was never in as much pain constant pain as you are. I will now be praying for doors to be opened for you to come to U.S. for the surgery and care you need. You live such a beautiful life there with the family you love caring for. You need to be able to live free of that pain. Thank you for telling us more and we'll all be pulling for you.

Dewena
P.S. I never knew that porcupines climbed trees!
Dewena Callis said…
Oh, my goodness. I just hit enter instead of publish after a long comment and think I lost it. Let me know if you don't have it. I too had endometriosis, the worst case my surgeon had ever seen, and he thought I had ovarian cancer and did emergency C-section because of that.
I always feel that whatever the blog owner wants to post on their own blog should be what they write about. As readers we can choose to read or not to read.

I'm sorry to hear about the problems you are having. I had no idea what this disease does to someone.

Those pictures are fantastic. I've never seen a live porcupine before. So neat that nature is all around ya'll.

Take care, have hope.
Linda Parker said…
Healing thoughts and prayers to you. I know it is a long shot, but our family gets good relief from a mixture of olive oil with frankincense and lavendar essential oils added. About 1/2 cup oil, 10 drops of each of the essential oils added. Apply over the painful area and gently rub it in. At the very least, it smells wonderful and is very safe and relaxing! You'll beat this!!
Oh man, I am just about in tears after reading this post. I am so sorry about Izzie. It sounds like it was the best possible decision and I know she will be very happy and healthy at her new home, but I know how much you love her. I can't imagine how hard that must have been.

Thank you for sharing more about your disease. My sister has it as well and has had several surgeries. Luckily she is doing better. I'm so sorry nothing has worked out for you so far. I sincerely hope you can get the treatment you need to live pain-free. You'll be in my thoughts!
Nana-Bob said…
Donna, I am so sorry for all you are going through. I will be praying very hard for you and I hope you can get all the help you need and fast! I can't imagine giving birth over and over again. :( If you go to Atlanta, let me know. I would love to come and visit you. xoxoxo and good vibes coming your way.
Dee said…
I wondered if endometriosis was what you were dealing with. Our daughter suffers with this also but not as severely as you. I am so sorry you are having to go through this and hope you can get some relief from surgery or treatment here in the US. My thoughts and prayers are with you.
Anonymous said…
I, too, had/have endometriosis. I had surgery almost 30 years ago. I remember thinking "Why me?" when I was first diagnosed with it and also being scared silly with all of the implications. You just have to live your life as best you can and be your own health advocate. You have my prayers--I know and understand what you are going through. I wondered if this was what your problem was. It is hard as people often don't understand. You're are in my thoughts and prayers. Pat M. at npmofjeld@comcast.net if you want encouragement...
Anonymous said…
"I can do ALL things through CHRIST who strengthens me."
Phil 4:13. The Lord is continuing to bless you everyday even when it is hard to get up, He is with you.
I pray that He will put everything into place for you to find the right doctor to treat you. I enjoy your blog so much and you are a blessing to me though you words and pictures. Please continue to update us on your struggles. The good and the bad so your friends can reach out to you when you need it the most. May God continue to bless you and your family (animals included)..B
Oy, I do feel your pain. I've battled endometriosis for most of my adult life as well so I do know all too well what you are going through. I am glad that you at least have real support. I hope you can get the whole insurance mess sorted out and find a treatment that works for you.

I also think you did the right thing for Izzy. My definition of a "forever home" is one that will always keep the best interest of the animal in mind even if that means finding another "forever home" for that animal. You did right by her and now you will have the room and energy to do right by another when the time comes.

Stay strong and carry on.
Jocelyn said…
Dang, honey, I was going to guess endometriosis from your last post. It sounded all too familiar. I have it too, and I have suffered from it as well. Yes, I know that level of pain and the debilitating way it worms it's way into a life. In fact, many of my life choices have been made because the endometriosis left me very few options at the young age of 19. I have had the surgery, I was on the drugs. If you need anyone to talk to, I'll be glad to listen and talk--whatever you need. The disease is horrible--I know from experience. And doctors can be just as bad about it, especially when they have NO concept of the pain involved.

If you need an ear or a shoulder, I'm here: chickenscratchacres@gmail.com. My thoughts are with you.

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