The journey begins

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Imagine you’re a seventeen year old girl. You enjoy doing things with your friends, and you enjoy school, most of your classes anyway. Life is good.

Suddenly you begin experiencing pain in your hands every morning. Your fingers are stiff and swollen; they look like little, fat sausages. When you walk across the room, it feels like you’re stepping on sharp rocks. Constant pain puts a damper on your appetite and you begin to lose weight.

Now imagine being told you have a crippling disease that will change your life. I was that young girl; the disease was rheumatoid arthritis (RA).

Rheumatoid arthritis is a life-changing disease. However, I didn’t know how much it would effect my life when the doctor told me I had RA. For forty years, I have experienced struggles and triumphs that have weakened my body, but strengthened my character and  my faith. It’s been an interesting journey and I’m going to share some of it with you.

So, fasten your seatbelt and get ready for the ride!

If you have questions, comments, or feedback don’t hesitate to add them below.

 

Shots, No More

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When I wrote this post Shots, Oh My! I was getting weekly Enbrel shots for my RA. Two years ago I was able to wean myself off the shots. I now control my RA with a more natural method. I try to eat a “clean” diet–no processed foods, gluten, dairy, soy, and very little sugar. I manage pain with turmeric, ginger, and the recently discovered thyme tea works.

I still struggle , especially when I’m frustrated or depressed. My last post Chronic Disease Sucks! was written during one of those dark times.

I know many people with chronic disease are unable to follow a natural diet and need to take medications. I’m not against this, as everybody is different. I just pray, that whatever they’re doing , their disease is under control and the pain is being managed.

Chronic Illness Sucks!

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I try to look at life in a positive way; putting a spin on it to show the good. However, sometimes I just have a lot of difficulty with it. Sometimes, I get down in the dumps and have to work to dig myself out. This is one of those times. Just a warning to you, this will not be a happy-go-lucky post. I’ve been feeling unmotivated, depressed, and really tired.

A little under two years ago I was diagnosed with Hashimoto’s thyroiditis, another autoimmune disease. I call it Diagnosis 2015 🙂 What’s another challenge for my life? I AM STRONG AND WILL NOT BE STOPPED. (Am I convincing anyone?) Anyway, this disease involves my thyroid. My body is attacking it because it sees it as a foreign invader. Unfortunately, the thyroid controls a lot of systems in the body. Although I’ve been working diligently on managing it, I still have moments of depression, brain fog, and lethargy. That I can handle, sleeping late, or spending the day in bed, are not a problem for me. In fact, I kind of like it. However, not having a lot of strength to do things I would really like to do is very depressing.
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Musings on Disability and Life

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I was diagnosed with RA over 50 years ago…..I have been sick a big part of my life…..never had the stamina others had, but refused to give in to it…..I’ve worked very hard all my life.
I live with RA but its not my life……I applied for disability and was awarded…. eventually I decided to start my own business…..one that would supplement the disability and allow me to work at my own pace…..it’s not about the money because I do not make a lot, but I can be productive….I can be creative, and that gives me an outlet….on the days I feel good enough….from my home….I do not have to work…its perfect for my RA….I still set goals for myself….solid goals I can work towards. This life is fragile….unexpected things can, and do, happen to us….But I have a God who is a great cheerleader…..that continues to push me in the right direction!!! 
It helps when we stay positive.  It does take time for us to re-invent our lives – to salvage and modify what we used to do that has brought us joy all our lives. These are the gifts that make us special, that I believe God has created us for. Our lives are not wasted because we have a chronic illness. We have a lot to offer with our gifts AND we have a lot to offer just because of who we are – nevermind what we do.
We are as limited as we let our selves be limited  our mental outlook is a huge part of our overall happiness and it’s extremely hard to focus on that with pain encompassing every minute of every day.

Writer’s Digest Self-Published Book Awards (Judges Comments)

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Entered my book into the Writer’s Digest Self-Published Book Awards. Although I didn’t win, I got some nice comments from the judges which I wanted to share with you. I copied and pasted the email body text here so you can read it. I’m happy with what the judges had to say. I know I did a good job in writing it.

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Below is a brief commentary for your entry in the 24th Annual Writer’s Digest Self-Published Book Awards. If you received the incorrect review by mistake, please contact Writer’s Digest immediately at this email address. With so many books to judge/record, our judges may accidently input the incorrect review into the system. We do our best to catch all of these, but there are always a few that slip past. Thank you for your understanding~

Entry Title Diagnosed At Seventeen
Author: Ruth Spoonemore
Judge Number: 51
Entry Category: Life Stories

Books are evaluated on a scale of 1 to 5, with 1 meaning “needs improvement” and 5 meaning “outstanding”. This scale is strictly to provide a point of reference, it is not a cumulative score and does not reflect ranking. Our system only recognizes numerals during this portion of logging evaluations. As a result, a “0” is used in place of “N/A” when the particular portion of the evaluation simply does not apply to the particular entry, based on the entry genre. For example, a book of poetry or a how to manual, would not necessarily have a “Plot and Story Appeal and may therefore receive a “0”.

*If you wish to reference this review on your website, we ask that you cite it as such: “Judge, 24th Annual Writer’s Digest Self-Published Book Awards.” You may cite portions of your review, if you wish, but please make sure that the passage you select is appropriate, and reflective of the review as a whole.

Structure, Organization, and Pacing: 3

Spelling, Punctuation, and Grammar: 3

Production Quality and Cover Design: 3

Plot and Story Appeal: 3

Character Appeal and Development: 4

Voice and Writing Style: 4

Judge’s Commentary*:

There is much more here by and about the author than the title first suggests. While the story indeed starts at age 17, when she is diagnosed with rheumatoid arthritis (RA), the narrative extends long past that part of her life. In fact, the reader is taken into the author’s 50s. Along the way, the story shares her journey with a crippling disease and affiliated illnesses and challenges for decades. It started with her fingers (somewhat ironic since she is maintaining a journal and other writing projects). The important factor is that this is not a “poor me” tale. The author shares the other parts of her life. Sometimes, the volume seems to be about everything else but her RA, but the disease and its impact are always lurking in the background. For one, as the author ages, walking and balance prove more and more challenging. This is carried to the point where she is afraid to live alone for fear of falling — something millions of Americans share for various reasons. There are some good writing techniques here (such as the sense of smell); the author maintains a readable voice that mixes quotes italics (to represent her thoughts and emotions) and observations by friends. The cover is a very apt image of a lone, spare tree, perhaps in fall, with a rainbow arcing overhead. This mix of reality and hope seems apropos for the memoir.

Follow up on the last post

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PS: I had my MRI last week. Everything is stable and looks good. I will have to schedule another MRI a year from now.

In my last post, I told you about discovering an aneurysm in my brain after falling and having to go to the emergency room. Much has happened since then, and I’ve been trying to digest it all. Here is the rest of the story.

It was supposed to be a “simple” procedure; going up a vein in my leg, entering the brain, inserting a stent and some coils, to stop any further growth. Although still considered brain surgery, the doctor had performed many of these procedures without problems. Unfortunately, things don’t always turn out the way they are planned. What was supposed to be one operation, turned out to be 3 operations in as many days.

During the first procedure, the breathing tube nicked a blood vessel in my throat and I started to bleed. The neurosurgeon went ahead and put in the stent. However, they couldn’t figure out where the bleeding was coming from and decided to discontinue the operation.

They finally figured out the blood was coming from a blood vessel in the back of my throat. The second surgery, done the next day, was going in and cautereizing the area so they could stop the blood flow. I lost a lot of blood, and had to have an infusion.

In the third surgery, the doctor went up the leg again and inserted coils into the aneurysm to encourage clotting of the blood within the aneurysm.

At one time during this whole adventure, I had IVs coming out of both arms, a large one out of the side of my neck, a feeding tube down my throat, and a breathing tube down my nose. I was a sight!

At a follow-up appointment with my primary care doctor, we learned that one time during my stay my heart pumped inefficiently. It was only pumping out 40% of the blood it would normally. (I’m happy to say, after being released, I went in for a stress test and an EKG and my heart is normal again.)

I spent 10 days in the hospital, most of it in the ICU. It was an unnerving situation, one that I never want to go through again!

In September, I go in for an MRI to make sure everything is okay.

I send out heartfelt gratitude to the staff who cared for me while in the hospital. The doctors and nurses, therapists, and all the others, made my stay as stress-free as possible in this situation.

I also want to thank all of you who sent their prayers, and good thoughts. Now that it’s over I’m hoping to get back to somewhat a normal life.

I have what?!? (Brain aneurysm)

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The end of 2015 was a rough time for me. Two very important things happened in October. I was diagnosed with Hashimoto’s thyroiditis and I took a very devastating fall. I will discuss the Hashi’s in a later post, but right now I want to talk about the fall.

I’ve fallen before, in fact at least two other times in the last 40 years. (That doesn’t sound like a bad set of odds to me.) However, this tumble turned out to be frightening. This time I banged my head against the linoleum floor opening up a big gash in my forehead. Needless to say, I panicked–foreheads can bleed profusely when cut. SInce you could see the bone, we decided I should go to the emergency room.

At the ER, I explained that I had a dizzy spell, so the doctor decided to run a CAT scan. On the scan they saw what they thought might be an aneurysm in the brain, and ran an MRI. Unfortunately, the results showed I did have an aneurysm .

I was immediately referred to a neurosurgeon who, after looking at the MRI, decided to do an angiogram. An angiogram is a procedure where they insert dye through an artery into the brain in order to see more clearly what’s going on, sort of a 3D image.

The results of the angiogram suggested that, although I may have had the aneurysm for a while, it is growing 3 to 4% larger every year and needs to be taken care.

There are two ways to take care of an aneurysm. One is to cut open the skull to go in and clipped it so it doesn’t get any more blood. The other way is to go through the same artery that they used for the angiogram and insert coils into the aneurysm. The coils helps the blood clot, also stopping more blood from entering the aneurysm. The second option is less invasive and you can leave the hospital in a day. Thankfully, it is this second procedure that the doctor said he will be able to do on me.

Treatment doesn’t stop there, though. For the next few years I will have to have an MRI done every six months to make sure everything is okay, and I will have to take an aspirin daily for the rest of my life.

This is a scary time for me right now. It is still brain surgery,even though he doesn’t go directly into the brain through the sKull. Obviously, there are risks with this procedure. The doctor went through the list of things that could happen before verify that I was still willing to go through the procedure. Considering the alternative, doing nothing and waiting for it to burst, which could lead to disability or death, I think I’d rather go with the brain surgery.

Right now, I’m waiting for the procedure to be scheduled. I’m nervous, but I know that I have one of the best doctors in the country doing the work. However, I’m still putting my trust in God because He is the actual one in control.

Please pray with me that the doctors hands are skillful and the procedure is successful.

BTW, it’s taken me a while to write this post, because it’s so much to process. I hope I explained it clearly. If you have any questions, or comments, feel free to leave them below. I appreciate you all, and want to thank you for being here for me.

To clear up any confusion

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I wanted to let you know, if you ordered this ebook a couple of years ago

 

Rheumatoid Arthritis:A Life-Changing Disease

my new book Diagnosed at Seventeen My Struggles and Triumphs Living With Rheumatoid Arthritis is the updated version. I’ve added more chapters (it now has around 15 chapters), and more personal stories as requested.

You will probably get an e-mail from Amazon telling you about the new update. Don’t be confused because the email will have the new title listed.

Go ahead and update, it’s like getting a new book for free.

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