Welcome To My New Life Fighting A Disease I've Never Heard Of Before....... Ankylosing Spondylitis

  Today I received a call from my son's school nurse. My son wasn't running a temperature, but he felt dizzy, light headed, and nauseous. My oldest son went to the school and brought his brother home. As soon as he came in the door, I sent him to his bed. I tucked him in the bed and asked if he needed anything. He went to sleep quickly. I checked on him a few times. He looked so peaceful sleeping.   This incident made me think about all of my children's futures. I pray they never have to face Ankylosing Spondylitis or any of the other illnesses that affect me daily. If you are a mother, you know how I feel. I would suffer any disease if it meant my children didn't have to experience it.   My daughter has already been diagnosed with Raynaud's Syndrome. I don't think she takes the disease very seriously. I constantly remind her to wear socks or appropriate shoes to protect her toes. She does take better care of her hands thankfully. She wears gloves when it...

  Yesterday I received an arthritis magazine I subscribe to in the mail. I began my subscription years ago, when I was first diagnosed. Back then I looked anywhere I could to get more information on ankylosing spondylitis. I found limited amounts even on the web.      Eventually, I discontinued my magazine subscription for a period of time. This was mainly due to the magazine not having much information pertinent to my disease. At that time, it's articles were more focused on rheumatoid arthritis and psoriatic arthritis. However, my rheumatologist office usually has waiting room copies of this particular magazine. I would peruse it while waiting, I began to see more articles including AS. So I made the decision to resubscribe. It has some very informative articles that include ankylosing spondylitis. I am so pleased that newly diagnosed AS patients will have options for information that those of us diagnosed several years ago did not have.   The article I w...

  Before I was diagnosed with Ankylosing Spondylitis, I had never heard of it. I knew something terrible was going on with my body, but I assumed it was Rheumatoid Arthritis. When I was a small child, my maternal grandmother was diagnosed with RA. We visited her every Sunday. I remember her crying in pain during some of those weekly visits. I also remember her recounting her weekly struggles and doctor appointments. As a child hearing these tales of pain in her shoulders or hands, I could not begin to imagine how your body could hurt so severely. My grandmother was fortunate in the fact that she was able to be active right up until her passing at age 84 years. I believe her body and pain would have been immensely worse if she had not been able to stay active.   Following in my grandmother’s footsteps is my mother. Mom had episodes of significant pain during her 40s, 50s, and 60s. However, my mom is one of those people who is never still. She is constantly doing something. S...

This week's weight loss is a disappointment. I don't want to make up excuses for my failure. I prefer to reflect and determine the steps I need to change.   Where I went wrong..... I did not drink much water at all this past week. That truly was my greatest downfall. I gave into my cravings. Some days they seem overwhelming. I did not follow through with my plan to exercise more. I was more depressed during the past week.   I could easily beat myself up for this failure. I don't think that would benefit me, in either weight loss nor my depression. I choose to move forward this week and just keep trying my best. I assume others have faced these types of set backs, if you have any tips, please share in the comments.  This upcoming week I plan to...... Drink more water! Exercise more! Increase protein! Snack on healthy foods!   Ok, here's my shame..... Last week's weight: 220 lbs Current weight:       222 lbs Hoping you each ...

  Happy Sunday! It's a gorgeous, sunny day at my house. After weeks of snow and rain it feels so great to have sunshine pouring into our home.   My goal for today is to go for a long walk on our local walking trail. I'm writing this while waiting for my husband to get ready to go with me. The exercise will be good for both of us.   My husband had aortic valve and aortic root replacement 6 years ago. He has never returned to the same person he was before the surgery. He sleeps for hours and hours, sometimes all day. Unless I nag him, he'd spend all weekend in bed. I find myself longing for the "go-getter" he used to be. He was energetic, fun, and wanted to do things with me. He used to get me in the vehicle and we'd drive nowhere in particular. Sightseeing was our adventure. We'd camp, hike, and talk for hours. He also used to write me love letters, buy me flowers for no reason, and call me just to say "I love you". I miss those little things....

Today I thought I'd share our videos about remodeling our son's bedroom. I posted earlier about trying to help my husband with this project. It was a slow process. Ankylosing Spondylitis is so unpredictable, one day I may feel like I can conquer the world but be bed ridden the next day. It has taught me to make flexible plans and just go with the flow. (Pardon the horrible mess!) The video below is an after remodel look. (We still had a few things left to do when I filmed it. I hope to do another video later to show the crown moulding, closet completed, and the awesome gaming cabinet my husband made for our son.) To follow our journey remodeling our mobile home, as well as restoring our vintage travel trailers, subscribe to our YouTube Channel.   Mobile Home & Vintage Camper Mom I'm hoping to learn how to edit my videos, I was happy I got my video uploaded lol. I'm so far behind on technology, it's a wonder I can turn a computer on! I have to ask my...

  I wanted to update you on my progress with my weight loss. I hope to post a weekly update. I think it will help keep me motivated. I'd love to hear ways you stay motivated.                                                                                                                               EXERCISE:   This past week the weather has been horrible so I didn't walk much. As anyone with ankylosing spondylitis knows there is a limitation on types of exercises we can do. I have tried more stretching this past week. I think when I can get outside and walk I will see more progress.                    ...

  Hello friends. If you visit my blog you will see some changes. I was tired of my old theme.   I don't know if it was only me, but I felt the look of it was tired and sad. My new background feels more upbeat and happy. I hope it makes you feel happy also.   My daughter says she thinks I have Seasonal Affective Disease (SAD) . When it's rainy and gloomy my mood is gloomy. I literally have no energy. I hurt more with my AS during those days. However, if the sunshine is flooding my home, I am so much more energetic and happy. I accomplish much more on sunny days. Of course ankylosing spondylitis is an inflammatory, arthritic disease so rainy, damp weather will cause us more suffering and pain. I don't know if I have SAD but I decided to add as much happiness and brightness to my days as possible.   I carried this idea to my blog. Why not feel energetic, hopeful, and happy when reading a blog? I'm still tweaking some of the gadgets.   Let me know what you t...

  I'm wondering if you've ever felt the kind of pain that cuts you to your core. I'm not talking about Ankylosing Spondylitis pain. We deal with it in one form or another daily. I'm speaking of emotional pain. The hurtful pain that makes your heart ache. I've experienced some painful emotions in my 46 years but there are a few that stands out as the worst.   Sometimes I wonder do the people who inflected those wounds know how deeply they hurt me. I think some probably realize, but then there are others who may be oblivious. How can someone hurt you deeply and not realize? I think they must be very self absorbed individuals. I try to always be respectful of other's feelings. However, being human means sometimes we all make mistakes. Sometimes you might say something that was meant one way but taken a complete different way. I have worried when I think I might have offended someone. Literally, I can't sleep from worrying about it. My grandfather passed away ...

  Now that I have been taking Cosentyx syringe injections for a few months, I thought I'd share my experience.   I began with a loading dose of one injection weekly for five weeks. My rheumatologist supplied me with five Cosentyx auto-inject pens. I've blogged about my euphoria feelings during my loading doses. I had energy like I hadn't experienced in years. I felt like the old me, the one who could function without pain. I won't go into all of that since you can read it in my earlier posts. I will say my experience with the auto-inject Cosentyx pen was much better than with the Enbrel and Humira pens. In this post, I want to focus on the syringes, in case anyone is facing injecting for the first time.   Once my insurance approved the medicine, my home delivery pharmacy shipped my medicine. To my surprise, they sent me syringes instead of auto-inject pens. I never open my box until the day of my shot, so I didn't realize until it was too late.   I have alwa...

  I wrote, not too long ago, about I need to lose weight. As many of you know that is easier said than done. At my last rheumatologist appointment I was dreading stepping on the scales. This dread was compounded by my mom standing close enough to read the scale. My mother has not been kind about the fact that I weigh too much. In fact, she has had both my sister and I in tears many times.   I hold my breath as I step on the scale, as if that will help me weigh less. The digital readout flips between a couple numbers and finally stops at my weight. I currently weigh more than I ever have in my life. Even more than during my pregnancies!    I wish I could blame it on medication side effects, but that would only be one component. Last year, I was changed from Humira to Enbrel and then from Enbrel to Cosentyx. I also had flares last year that were treated with steroids.    I know a lot of my habits were the culprit. I have never been a healthy eater. From...