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

  Fall is here finally! It seems like it's been so hot for so long, I couldn't handle being outside for very long. These cooler days are definitely a welcomed relief from the heat. So why does my pain levels have to increase every fall? I began to notice this trend a few years ago. It is disheartening because fall and spring has always been my favorite times of the year. Those two seasons are when the temperatures are just right for me to enjoy the outdoors.  I used to love traveling through the mountains to look at the beautifully colored leaves. I'd have my husband and kids get out of the vehicle with me at every scenic overlook on the Blue Ridge Parkway. I miss those days. As my Ankylosing Spondylitis has worsened I haven't been able to travel as much or as far as I once did. Sitting for extended periods in a vehicle makes it almost impossible for me to move. It's as if my body seizes up if I don't keep it in motion.   I was talking to some friends the ot...

  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.                    ...

  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 ...

  Frustration.... such a little word but it carries so much meaning. Frustration, it is what I've felt for the past week, dealing with medical insurance renewal. Yes, it's that time of year again, choose a plan. If only it was that simple.    Having a rheumatic autoimmune disease, Ankylosing Spondylitis, entails many doctors and many medicines. Therefore, I need an insurance plan that covers a majority of what or whom I need to fight this disease. It is no easy feat to find the "perfect" plan. There actually are no perfect plans available to me.   I resort to finding the insurance plan that covers the specialty drugs I need. Luckily, that plan also has my primary general physician, my neurologist, and my opthamologist included as in-network doctors. The only doctor it lacks is my rheumatologist. Oh, and it also lacks coverage for the folic acid I need to take daily to combat the side effects of the chemotherapy drug. The chemo drug makes my hair fall out, unless ...

  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...

  I'm not sure if it's just me or if everyone experiences this, but there are days I don't want to leave the house. It can be days before a scheduled appointment or task, that I begin to dread the thought of going. There are days that I hurt and ache too much to go anywhere. Those aren't the days I'm describing. It's just a mounting sense of dread that holds me back. I can schedule something and even look forward to that event, but as the event draws closer my eagerness turns to apprehension. My mind is consumed with "should I cancel" or "maybe I can leave early". I begin to question myself as to why I even scheduled the event in the first place.    I had my annual mammogram scheduled for 2:30 yesterday. Last Friday, I began thinking maybe I should cancel. My thoughts were, I have had a mammogram every year, so I probably could put it off until next year. I mean all my prior mammograms have been clear, no lumps or cysts. Plus, my mom doesn...

  Saturday night was torturous. I rolled and turned all night. My hips and lower back were in severe pain. I think, as a friend suggested, I may have overdone myself. Also, I have been noticing my weekly Monday dose of Cosentyx has me feeling wonderful until Friday or Saturday. I assume that's why my doctor is having me do a five week loading dose. Fingers crossed when I begin my monthly injection it will be effective for the full month.    Monday morning I was psyched to get my injection. Exactly as the prior two weeks, by midday I felt so much more energetic. My husband took some vacation days from work this week. He and I have had a productive start to our week.   My youngest son will be having a birthday soon. He wants a new bedroom, since his sister got married last July we have an extra empty room. My husband and I thought a good birthday present would be to remodel the room my son wants to move into. Our money has been tight since I had to give up my job l...

Yesterday was my yearly checkup. I always dread going for it but I love my doctor. She helped me through some of the lowest times in my life. She delivered all three of my children. After my third child, I slipped into a deep, dark, postpartum depression. My doctor isn’t like typical doctors, who never share their vulnerabilities. In her past she has had two nervous breakdowns. Some people in my community, ask how can you trust a doctor who has such a history? Thankfully, there is a lot of people in our community who views her breakdowns as I do. It’s a strength in my opinion, my dr doesn’t try to hide her struggles. She is not a robot. Life and issues affect her just as it does her patients. She has no problem sitting and really talking to her patients. She doesn’t only read her patients medical charts, she knows their families and cares. When I experienced my postpartum depression, she sat and listened to all my worries and fears. She wasn’t like my family members who said, “S...

  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...

My husband needs a new, actually a gently used, work vehicle. Why, oh why, do I not have patience to deal with used car salesmen? Is it because I am already in pain when we arrive at a car lot. Add walking around the lot looking at different vehicles, to an already wore out spine, feet, and hips and you get me at my worst. I realize it’s not really the salesman’s fault. I understand he is trying to sale a vehicle to earn a living. He may have a family at home that depends on him. I know he has no idea what I am experiencing. That is one of the biggest issues with an invisible disability. People can not see all the degeneration going on in your spine and hips. They only see your outward appearance. I’m sure my face reflects my pain but unless you know me, you may mistakenly see my facial expression as grouchiness. I know many of us Ankylosing Spondylitis sufferers have disabled parking placards. In my support group, many of the younger members have had people comment on their use ...

 I want to share a book, that I found helpful when I was first diagnosed.  After being told I have Ankylosing Spondylitis, I wanted to learn everything I could about the disease. Much of the information  I found was either outdated or for medical professionals.  Luckily, I found a book on Amazon that was written by an actual Ankylosing Spondylitis fighter.  In trying to spread awareness of this nasty illness we face I have teamed up with Amazon to sponsor a giveaway. One person chosen at random by Amazon on Oct 27, 2017 will receive a copy of the first book I read about AS. I will post a link at the bottom to the giveaway. Amazon will ship directly to the winner, I will not have access to any personal info on the winner. Contest rules are listed on the Amazon page. My only regret is Amazon limits the giveaway to the US. So sorry as I have several friends overseas. Hopefully next giveaway I can find something for everyone. Gentle hugs my friends. J Holma...