My blessings

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If you described my life to a stranger, they would think it was awful. After all, I have lived with severe chronic pain for almost ten years. Since my second pregnancy, I have battled numerous health problems. I have eight separate diagnoses. (Scoliosis, Myofascial Pain Syndrome, Rheumatoid Arthritis, Neuropathy, Sacroiliitis, Sacroiliac joint dysfunction, Ankylosing Spondylitis, and beginning stages of Thyroid Disease). I have moderate hearing loss in both of my ears. Plus two issues, which they are still doing testing for. I have had two major surgeries- a spinal fusion (T2-L4) in 2012 and a partial hysterectomy in 2015. I am chronically ill and will be for the rest of my life. I wake up every day in some degree of pain. I can’t remember what it is like not to hurt. However, I have accepted this, and I will be the first to tell you that I have a fantastic life. I thought with November ending I would take the time to count my blessings.

1. My HUSBAND! I count myself lucky every day for my husband. He and I celebrated eleven years of marriage this past July. I wasn’t ill when we meet. I was a healthy, lively, active nineteen-year-old, who could go hiking and dancing. However, my health wasn’t long-lived, I have been sick for most of our marriage. My health issues add stress, but at the same time, I believe we are stronger for them. He is my rock; I know he will always be in my corner. He is my best friend and biggest supporter. He always has my back. When I feel like giving up, he’s there urging me to keep up the good fight. He is one of the main reasons that I can get up each day and keep fighting, no matter how bleak things look.

2. My Boys. They are the other reasons; I keep going. My boys are the greatest gift God has given me. Those four crazies give me a reason to keep going. They are my reason for living. They are my joy.  They always amaze me with their empathy and understanding. I have never hidden my health issues from them, frankly because it would be stupid to try. I would fail miserably if I tried. They are always glad to help me and take care of me when I am feeling bad.

3. Doctor M. When I walked into Doc M’s office for the first time in August 2016, I had given up. He was the third pain management specialist; I had seen since we moved in April 2016. The first two have been awful visits that left me in tears. I didn’t think he would be any better. I was on a large number of medications which weren’t working. When it came to my pain issues, my baseline was a seven on the scale. I would end the day at an 8 or 9, hardly able to move because of how much pain I was in. I was miserable. My family was unhappy. I felt like I was failing them. I was in and out of the ER because of uncontrollable pain. Doc M spent almost three hours with me on that first visit. He heard me out, really listening to what my problems were. When I was done, he looked at me and said, “That’s a load of bullshit. There is no reason your pain should be so poorly controlled. We are going to get it under control. You and I will work together until we find something that works.” He kept his word. It took us ten months to find the right treatment protocol, but we did. Since I started that protocol in May 2017, I have felt better than I have in years. His plan has kept my baseline at a four on the pain scale. It has been over a year since I went into the ER for uncontrollable pain. I now spend around 85% of my time at a three/four on the pain scale. Doc M gave me my life back. He gave my kids back their mom and my husband back his wife. I will forever be grateful to him.

4. My Tribe. I have lost friends, who couldn’t understand or cope with my medical issues. However, I have a core group of friends, who have stayed true through it all. I am blessed with some of the best friends a woman could ask for. They never complain if I have to cancel our plans last minute because I woke up hurting too sick to go out. They listen to me whine on the bad days. They are also the first to celebrate the good days with me. Over the years, they have watched the boys while I went to doctors. They have driven to my house in the wee hours of the morning to watch the kids while Mark took me to the ER. They have taken me to the ER. They have brought me meals and helped clean my house. I am blessed to call these women my friends and sisters. My life wouldn’t be nearly as great without them.  There are two ladies in my tribe, who deserve individual shout-outs. They make up blessings 5 and 6.

5. The first is Annie, the woman I trust to raise my children if anything should ever happen to  Mark and I. Our friendship started over a bowl of ice-cream, the night before my wedding. In 2012, she put her life on hold for almost six weeks and flew out to help with the boys while I recovered from the spinal fusion. I don’t know what we would have done without her.

6. The second shout-out goes to Katie, my soul-sister. I met Katie after our last move. We were introduced through a church playgroup. Afterward, I went home and looked her up on social media. She had the most fantastic profile picture, and I decided I had to become friends with her. It didn’t take long for her and me to figure out we were a match made in friendship heaven. We’re two peas in a pod, clearly split up at birth. It would take to long to count the abundance of blessings Katie brings to my life, but her friendship is essential to my well-being.

7.  I have excellent health insurance, which covers my multitude of specialist, my physical therapy, and all of my medications. Unlike, many people with chronic illnesses, I don’t have to worry about being able to afford my medical care. That makes me blessed beyond measure. This single fact means I don’t ever have to worry about being able to see my doctors when I need to. It means I don’t have to worry if I can afford my medication each month.

8. Financial security. My husband has a good job, which provides a good life for us. We have a roof over our head, plenty of food in the fridge. (Though it’s pretty bare at the moment, I need to break down and go grocery shopping!) I am blessed I can grocery shopping without having to worry about money. I know I can afford to feed my family healthy and also splurge on special occasions like birthdays. I can clothe my family. All of our bills are paid on time.  For someone, who grew up without financial security, it means the world to have it.

9. Being able to homeschool my boys. I have been homeschooling my boys, since Paul started kindergarten, six years ago. Several of my boys have special educational needs between learning disabilities and speech delays. I count myself very lucky that I can homeschool them. They thrive in a way they wouldn’t be able to in the public school system. I get to stay home, supervising their education myself. I can make sure they are getting the best education they possibly can.

10. My doctors. Over the past year, I have assembled an amazing team of specialist doctors. They are working together as a team to manage all of my health issues. For the first time, every single one of my health issues is being handled well. The doctors realize that all of my health issues are interconnected. They can’t isolate them. They have to look at the whole picture.

The above list is my top ten blessings. I have many more blessings, but these ten are the most important ones. My life is filled with a multitude of doctor appointments and treatments. I may hurt every single day of my life. However, I am blessed beyond measure. I have an incredible life despite my challenges, one that I wouldn’t give up for anything, not even if giving it up meant being perfectly healthy.


A Long Overdue Update on my Health

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I am happy to give a long overdue update on my health. I am currently feeling better than I have in a long time; however, I am still having some symptoms that need to be managed. As I mentioned in the last blog post, I have been working with an endocrinologist and an internal medicine doctor. They have both been amazing. For the first time in forever, I have a team of doctors, who are looking at my health as a whole and that has lead us to some answers. Some of the answers are good and some of them are bad.

Starting with the good news:

-The positive Lupus blood test turned out to be a false positive caused by my Rheumatoid Arthritis.

-I am no longer suffering from severe chronic tachycardia (elevated heart rate). One of my medications turned out to be the culprit. My doctors and I worked together to wean me off of it. As soon as I came off the medication entirely, the tachycardia went away. I have been tachycardia free for four whole months!

-The treatment plan, my doctors and I have put together, is managing my pain well. My baseline is a four on the pain scale. After years of living with a benchmark of seven, I never believed we would have my pain so well managed.

Now on to the bad news.

-The testing came back on my thyroid, and I am in the beginning stages of either Hashimoto’s Thyroiditis or Graves disease. They are both autoimmune diseases which affect the thyroid. We will not know which one I have until it progresses further. In the beginning, they have the same appearance on ultrasounds.

-My body is still struggling to process and store vitamins and minerals correctly. This is especially true when it comes to vitamin D, vitamin B-12, and Iron. My doctor has put me on a vitamin D and B-12 supplements. While he would like me on an iron supplement, I have a history of not tolerating them well. So, we are holding off at this time. If my iron levels fall much further, we will have no choice but to supplement, regardless of how sick the iron makes me.

-My cholesterol levels are mildly elevated, which is a new symptom that has presented in the last eight weeks.

-I have developed a sun sensitivity.

My immune system is going haywire. My doctor believes that I am suffering from polypharmacy. Essentially, all of the medications that I am taking to treatment (aka be a functioning person) my pain conditions are wreaking havoc on my immune system. We have reduced my medication load as much as possible. Having done that, we are trying to treat my symptoms using a combination of diet and lifestyle changes. Hopefully, by making these changes, we will see improvement in the symptoms and possibly reverse some of the damage to my immune system.

Regardless, of what new curve balls life throws at us, we continue onward. We keep trucking along and making the best of everything. I refused to allow my pain to beat me and I refuse to let these autoimmune issues beat me. My family needs me, and I refuse to fail them.