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

My last post was a while ago, in it I promised my next would be about my nephew's dog. He was the reason my sister was not inside her home when it caught on fire. Did he know something terrible was about to happen? I think he did, I consider him a hero.     First, let me give you some information about this remarkable dog. About 6 or 7 years ago my nephew moved into his own home. He decided he wanted to get a dog as a companion. My nephew loves the outdoors, so he wanted a dog that he could take for runs in the park, as well as, take on hunting trips. My nephew researched different breeds and finally settled on the breed called Vizsla. He traveled across 3 states to go pick up his new best buddy. After meeting this little reddish brown bundle of energy, he decided he'd name him, "Max". Max was a handful as he grew into an adult dog. He reminded me of Tigger from Winnie the Pooh, because he bounced and bounced wherever he went. Once he was a grown dog, he was so heavy...

  Last Wednesday I did something I have not did in years. Two of my children and I went for a long, leisurely walk in our town. We don't live inside our town limits but we are there at least 2-3 times a week. However, on those weekly trips it's for business or grocery shopping. Those trips are focused on the task at hand. We don't take time to enjoy the beauty of our little town.   I think I am not alone in feeling life gets too busy. I know when I was working full time, all I did was get up, go to work, get off work, come home, fix supper, spend a couple hours with my family and then do it all over the next day. There were days my son would have an after school activity and that made the day even more hectic. Also with my ankylosing spondylitis there were days where I came home literally exhausted and went straight to bed. I am fortunate my mother lives beside me so on my worst days she would fix my son supper. On some of those days when I was overwhelmed with fatigue, I...

  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 ...

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.                    ...

  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...

  Last night my hip was throbbing with pain. Another hallmark pain of the Ankylosing Spondylitis disease I live with daily. I took my nighttime medications and as I lay in bed awaiting relief, I thought about contentment. What is contentment to me personally?   I thought about all the materialistic items I own. My home, car, land, and sentimental possessions all passed through my thoughts. Then I thought about my early childhood years. I remembered all those loved ones who have passed on and what an impact they made in my life. I truly have been blessed with some wonderful people through the years. That leads me to the friends and family I have today. I know if I was in need, they would drop everything and rush to my side. That is a priceless treasure. I would consider myself rich to have such people as my support system.   As I continue thinking, I hear my oldest son's laughter in the living room. He has always had an infectious laughter. I smile to myself. My childr...

  Yesterday I got a call no one wants to receive. I picked up my ringing phone at 2:05 pm. I heard my husband's voice on the other end of the line. He sounded a bit different. I immediately knew something was wrong. That's when I heard the terrifying words, I've been in a wreck. My stomach dropped and my heart began pounding. My first response was "are you ok?". My husband said, he thought he was okay. He said a truck reversed in the road, because apparently it missed a driveway. My husband had stopped in the road waiting for the truck to proceed. Next thing my husband knew the truck backed right into the front of our Mitsubishi Galant.    I knew my husband was okay and talking to me, waiting for the police to arrive. I should have been relieved but I began shaking severely. I sometimes experience this shakiness with no onset occurrence. I wanted to go to my husband but I could barely walk due to the shaking. I definitely didn't think I should drive. Luckily...

  I have been steadily decluttering my home. It amazes me what we have acquired during 26 years in this home. I think we become blind to items when we see them daily. I cleaned a huge contractor size trash bag of clothes and miscellaneous items out of my oldest son's bedroom and closet. My trouble is sometimes I have an emotional bond to my kids childhood items. I remember how cute they looked wearing certain clothes or how attached they were to certain toys. The funny thing is when I ask my kids if they want to keep the item, most of the time they said "no". I was shocked when they first began telling me to donate items. I finally realized I wasn't hanging onto the items for their memories, it was for my memories.    One day I watched a lady on YouTube, she was downsizing and decluttering. She recommended the book "The Magic of Tidying Up".  Some people may recognize it as the Kon Mari method. I first checked out the ebook version from my local library. I...

  Thanksgiving is a wonderful time to reflect on our many blessings. It is also a time to cherish family gatherings. We celebrated Thanksgiving at our home on Friday. Thursday was not an option due to my oldest son's work schedule. On Saturday we were invited to the home of my daughter's in-laws to eat Thanksgiving dinner with them. We truly enjoyed both days. Each was filled with much laughter and more food than we could possibly eat.   I was thinking back to my childhood Thanksgivings. My mother cooked on a wood cookstove during my early childhood years. I can not imagine cooking a turkey that way. I remember mom would have to keep an eye on the wood, not putting in too much, but enough to keep the oven temperature stable. We had running water from a well. However, we had no hot water heater, so there was always a big canner of water sitting on one end of that stovetop. Mom always knew where the stovetop was the hottest and moved her pots and pans around accordingly. At th...

  If you follow my blog, you've learned a few things about me.  #1... I am not a professional writer, I'm sure I make many editing mistakes. Sorry! #2... I started this blog as an outlet for my emotions, but it has grown to be an instrument to promote awareness of Ankylosing Spondylitis. #3... I have never blogged, tweeted, or had a domain name before starting this adventure. I didn't even know what a domain name was!   To expand on #3 a bit, my children laugh at my computer skills and knowledge. Until a couple months ago, I had no idea there was so many social networks online. It overwhelms me!   My teenage son helped me begin setting up my blog on Blogger one day before school. Unfortunately, his school bus arrived before we added all the gadgets on the layout. I did the best I could, adding gadgets if they sounded useful to me. You can see how lost I was without my son to educate me.   I would sit down to write a post in the mornings after my son le...

  It's important for us to have an outlet. One of my outlets is this blog and spreading AS awareness. I thought tonight I'd share another one of my enjoyments. 1966 Shasta Compact   A few years ago, my son brought home a 1965 Scotsman travel trailer. His plan was to disassemble and recycle the materials, but I feel in love with it. I convinced my son we could restore this cute little camper with it's funny front hump. Hence began a Pinterest search for restoring a vintage camper/travel trailer. The more I immersed myself in finding ideas to restore our Scotsman, the more vintage campers I saw. I was intrigued by people who "glamped" these little vintage campers. You can search "glampers" or "glamping" on Pinterest and see hundreds of the blinged out campers. We decided a more traditional route of restoration was what our little Scotsman needed. We named our Scotsman, Dexter, because apparently all little vintage campers need a name of the...