A Good Night's Sleep

  I slept really good last night. I haven't slept good in quite a while. I know fellow ankylosing spondylitis sufferers know exactly what I go through during the night. I've been off my biologic medicine for weeks now, the pain and stiffness increases the longer I am off of it. My hips are the current problem area. Whichever hip I am laying on wakes me with searing pain. I do what I call a roll onto my other side, but anyone seeing this process would call it anything other than a roll. I have to lift the top half of my body as high as possible then twist and slide to maneuver onto my other side. I always worry, I will wake my husband as I perform this feat of uncoordinated movement.

  This morning when I woke, the very first thought I had was "no hip pain". I think after you've experienced pain for many days or weeks, you appreciate the "pain free" days hundred times more.

  I am still awaiting my quantiferon TB test results so I can begin Cosentyx. I hope my hip pain will stay away, until I can get my loading dose of Cosentyx in my system.

  I hope many of you awake this morning to realize you had a pain free, restful sleep. Enjoy your day if it was a good night. If you suffered during the night, I hope you can take time to pamper your body today. Hoping tonight will be better.

  Gentle hugs my friend!

The Result Of My Halloween Project

  I posted about my Halloween DIY crafts the other day.

  As I stated in that post I had never heard of a horror doll when my husband suggested I make one. It was a fun project. 


  • I found a cheap, $1.99 used doll at a thrift store. 
  • I used a knife to jab out her eyes first.
  • Next I painted all her plastic parts black (legs, arms, & head)
  • After the black paint dried, I used a cosmetic sponge to lightly cover the black paint with dabs of white paint.
  • I used red paint to highlight around her missing eyes, to appear they had been pulled from her eye sockets.
  • While I had the red paint out, I painted around her mouth to appear that blood is running from her mouth. It's suppose to appear that she's just fed on a human neck.
  • I used my cosmetic sponge to place random blood splatter on her feet, hands, and a white cloth I used to make her dress.
  • I thought her eyes needed a little something more so I added cracked black crevices coming from her eyes.
  • Since she is suppose to be a vampire baby, I broke two tines off a plastic fork and glued those to her mouth for fangs. Personally, I wanted to leave the teeth off but my husband thought it looked better with them.
  • Lastly I bought a $1.00 play wig at Dollar Tree and cut strands of it to glue scattered on her head.
  • I had some blue ribbon left from my daughter's wedding so I made her a bow. I glued it on the top of her head also. It helped cover where I had glued the hair pieces.


  This is a crazy, but fun project. It helps to keep our minds occupied when we are in pain due to AS. So while it may not be a typical craft project, it helped me feel accomplished.
  That day I won, AS couldn't stop my progress and creativity.

  I hope each of you find a craft or something you enjoy to keep your mind off your pain.

  Gentle hugs to all!

Cellulitis Came To Visit On Christmas Eve

Christmas shopping is the last thing I want to think about on this beautiful autumn day. However, last Christmas I made a promise to myself that I would do all my shopping and wrapping early. Normally I procrastinate until Christmas Eve for last minute gifts, wrapping, and food prep. Last year taught me a great lesson on not putting off work until the last minute.
It was December 24, 2016, my husband was off from work and my kids were home. I had my day all planned out. My intention was to sleep in a little later to hopefully give myself a boost to face the holiday hecticness. Of course my unwelcome enemy, Ankylosing Spondylitis, had other plans for me. I woke with my hips in such severe pain it felt like someone jabbed knifes in each hip joint. I slowly made it through my morning. The stiffness I feel in the morning lasted longer that day. I chalk that up to the stress of the holidays. One thing I have learned the hard way is stress can cause flares. Anyhow, I had put the turkey in the oven. My husband is a wonderful cook and he handled all the brining the night before. I asked him to help cleaning the house and had each of the kids working on projects. I still had almost all the presents to wrap plus my mother was hosting a dinner at 6pm for our side of the family. My 80 year old mother had asked for my help preparing the side dishes at her house as well. So, yes, I was almost in a panic mode.
I began noticing a burning sensation on my leg. I have peripheral neuropathy so I am accustomed to tingling, numbness, and burning sensations in my extremities. However, this was the worst burning I had ever experienced on my leg. I raised my pants leg and my leg looked like it had a bad sunburn on it. I thought it was really strange but tried to continue with my responsibilites. At some point it became almost unbearable. I didn’t want to have to deal with this right now, even though my husband was insisting I go to the hospital emergency room. Who wants to go to the ER on Christmas Eve? So in order to dodge his insistence I told him I would post a picture of my leg in my AS support group. Maybe one of them could tell me what was going on with my leg.

 I truly value my AS support group. They have helped me through some very difficult days. Plus there are times I believe first hand experience with a condition might be more valuable than what a doctor read in a textbook. I was surprised by the number of people who responded considering it was Christmas Eve. The consensus was I had cellulitis, an  infection in the skin, which can be dangerous if not treated. Everyone felt I should go to the Emergency Room.
I made a few calls, left my oldest child in charge of the turkey, and headed out the door. My support group was correct, it was cellulitis. By the time we arrived at the hospital the redness had spread all the way up to my knee. The doctor started intravenous antibiotics immediately. She said on any other day she would have admitted me to the hospital overnight. Since it was Christmas Eve and she knew I had children she agreed for me to return home to spend Christmas Eve with my family. Of course, the condition of my release was I take more antibiotics in pill form and return if my leg worsened. The doctor got a pen and traced the shape of redness on my leg, if the redness crossed those black lines I was to return immediately.
Thankfully the redness began receding. Those IV antibiotics are fabulous! I made it to my mom’s house in time to visit with everyone. My daughter did a wonderful job with the turkey.
Plus I discovered, kids love presents even when they are in Walmart plastic bags! I didn't have time to get those presents wrapped.
With a chronic illness, you learn to expect the unexpected. This year I will be prepared just in case AS visits.
Until next time friends….gentle hugs.

Car Shopping With Ankylosing Spondylitis - Not As Fun As It Sounds :)

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 of the placard. I personally haven’t experienced this, but my 81 year old mother is usually with me. I’m sure people think the placard belongs to her. The ladies who have been the target of comments have some outrageous stories. One lady overheard a person say, “since when is fat a disability”. Another said a person walked up to her and stated, she should be ashamed to use that handicap spot when people with disabilities need it. The stories go on and on. I assume these outspoken individuals have never heard of an invisible disability. Personally, if I’m having a good day I don’t use my placard. On the days where I am hurting, or know by the time I finish grocery shopping I will be in pain and exhausted I use my disabled placard.
I hope invisible diseases get much more attention in the press and on television. It is only with awareness, people will understand what an invisible disability entails.
This weekend my husband and I will continue our vehicle search. Maybe I will educate a car salesman on AS and other invisible illnesses. Haha! Probably not, since I usually try to avoid them like a plague. I can not stand to listen to their pitches. All I need is price and mileage. I hate when a vehicle has 190,000 miles and the salesman says, oh that’s nothing in this day and time. Yes it is something! It’s wear and tear on transmission, motor, and all mechanical parts. You can see why my husband and I drive our vehicles until they are past dead. I hate car shopping with a passion.
Wish us luck this weekend. May each of you have a pain free, fun weekend.
Gentle hugs my friends!

Inspiration Through The AS Battle

  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 their own. We haven't completed Dexter's restoration yet, but I can't wait to go camping in him. Perhaps our first expedition will be to one of the many vintage trailer rallies hosted all over the United States. Wherever we go, even if it's just camping in our backyard, it will be a joyous celebration. 

  My husband has also got into the vintage trailer phenomenon. It's contagious, I believe haha. He even bought himself a 1966 Shasta Compact. His little camper doesn't need as much work as Dexter, so we may be camping in it first. It is so nice to have something in common that can take our minds off this disease I'm fighting. My husband hasn't fully decided on a name for his camper, but I'm leaning toward Susie-Q. 

  I could go on and on about vintage trailers but I'll not bore you any longer. My main objective was to encourage each of you to find something you love to pursue. We can get discouraged and depressed fighting our own bodies daily. It's good to have something to look forward to and work toward.

  I'll update about Dexter and "Susie-Q" when we get them completed.

  Gentle hugs my friends.                       

Is It Good News???

  Good news.... my insurance approved Cosentyx. That's step 1 of the process. Now to follow through with the other requirements.
  
  Step 2- My doctor wanted me off the Enbrel at least two weeks before starting the Cosentyx. I've actually been off Enbrel three weeks. Each week that passes I hurt more. The last few days my hips have hurt terribly during the night and for about an hour upon rising. So I am excitedly, anticipating starting the new medicine. If you're a biologic medication user you know how crazy that sounds. Even with the doctor's warnings of IBS risk, cancer, infections, etc which the medicine can cause, I need something to slow the hip degeneration. When I hurt like I have the past few days I imagine this monstrous disease is progressing toward taking more away from me. Walking is a gift. I try to think how blessed I am to still be mobile. Never take anything for granted.

  Step 3- Due to the medication risk factors, my doctor requires I have a yearly quantiferon TB test. (Plus regular lab work every 3 months) My quantiferon TB test up until this year all has been negative. However, a couple months ago when I had my yearly test it was inconclusive. I had a repeat test a few weeks ago and it came back inconclusive also. I spoke to my doctor's office today and they want me to retest tomorrow. She told me not to start the Cosentyx until I have a conclusive result on the TB test.

  Hopefully tomorrow my test will produce a result. I admit it is concerning since I have been on biologics for years. The humira was causing me many infections last winter. I know we immunosuppressed people are suppose to avoid places where illnesses are prominent, such as hospitals and nursing homes. Unfortunately, I had to go to the emergency room several times while fighting those infections. Also I had to have a spinal tap performed in the ER to rule out spinal meningitis. I'm hoping I wasn't exposed to TB during one of those visits.

  I'm rambling now....sorry. I hope you all have a pain free night and much happiness tomorrow.

  Gentle hugs, my friends!

 
 

Book Giveaway to Spread Awareness

 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 Holman
Also known as fightingmybodydaily.wordpress.com

Your giveaway link:
https://giveaway.amazon.com/p/017fb3730d718c49

Halloween Happenings

  Guess how I spent my day??

  I crafted a horror doll. If you don't know what a horror doll is, you're not the only one. I didn't either until my husband shared a YouTube video of a lady making a horror doll. With Halloween approaching it seemed like a fun project. Plus it gave me a purpose.

  Between waiting for her layers of paint to dry, an idea popped into my head. I admit I am a Pinterest junkie. On Pinterest I have saw so many cute signs made out of old wood. Since I already had paint and brushes out, I decided to make a fall sign. Luckily my husband, who is a pallet hoarder haha, had disassembled several pallets this past weekend. I scoured through his stack of pallet boards, until I found an old, weathered looking board that was split a bit on one end. I figured the split would give it character. Plus the board probably was unusable for my husband's next project.

  With board in hand, I headed back inside. I considered doing a horizontal sign but in the end felt a vertical one had more "style". Luckily I had kept the stencils we purchased for my daughter's wedding signs. I freehanded a pumpkin and stenciled "WELCOME" in autumn colors. 

  It isn't perfect but I'm kind of proud of it, because I did it all on my own. Ankylosing Spondylitis didn't hold me back today! I consider today a win!

P.S. I'll post pictures of the sign and the horror doll when they dry.


Keep fighting my friends,
๐Ÿ™Œ๐Ÿ™Œ๐Ÿ™ŒJeanJo      
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Please comment, I love hearing from my fellow fighters!

Beauty All Around Us!










Enjoying the beauty all around us.
Even in unexpected places.

I Can Still Be A Mom While Fighting Ankylosing Spondylitis

  Last night was very chilly. We had to use our furnace for the first time this season. Snuggling under our covers felt so good this morning. It made getting up even more difficult than normal.

  With the chill in the air and leaves starting to fall, I am reminded the holiday season is just around the corner. Which means it is time for me to start thinking about birthday and Christmas gifts. 

  I have 3 children, two are adults. (Although, I still think of them as kids.) Also, I was blessed to welcome a wonderful son-in-law into our family this past July.

  My husband and I try to make our children's birthdays as special as possible. With two having birthdays right after Thanksgiving, it can be overshadowed by holiday events. As a mother with an autoimmune disease it can be a stressful few weeks. Each year I want my sons to know how special they are to me. I want to celebrate the blessing I was given when each were born. 

  My mind wanders back to my early 20's before Ankylosing Spondylitis hit me full force. My oldest two children were born when I was 21 and 25 years old. I remember the joy of shopping for their birthday parties. My oldest son loved trains, so I had a custom ice cream train cake made for him. My daughter was a huge Barney fan, before he became a huge franchise. We searched everywhere for Barney VHS tapes. The tapes with Sandy Duncan portraying the mother of Barney's friends. I would decorate our house and purchase party hats, horns, and those silly things that unroll as you blow on it. Some years we'd rent out McDonald's private room for the parties and invite all the kid's classmates.

  When I was 33 years old, my youngest son was born. By that age, I was feeling more of the symptoms of what would later be diagnosed as Ankylosing Spondylitis and Peripheal Neuropathy. From the time my baby was born until he was about 2 or 3 months old, I had no feeling in my hands. Maybe that's not the correct description of what I experienced. It more accurately could be described as, my hands felt like I had extremely thick gloves on them. When I touched anything or tried to hold anything it was a very dulled sensation. This was horrible and very scary, trying to hold my newborn and feed him. I feared dropping him, so I usually had my husband or mom lay him on a nursing pillow and I just supported him on it on my lap. I also suffered from postpartum depression. Between my emerging health issues and my hormones from pregnancy, it took medication and counseling to pull me through my postpartum depression.

  I have so much guilt about my youngest son's birthdays. When he was little, I didn't have the energy or health to plan and decorate like I had for my other two children. Instead of ordering a special cake for his birthday, I sometimes bought whatever Walmart had in their bakery sales counter. Other times I baked a Betty Crocker cake and added writing with colored icing. I know I sound very materialistic at this point. I know a homemade cake can have much more meaning than any bought cake.

   You see, this terrible autoimmune disease took so much from me. I want to have energy to plan a party. I miss shopping for the perfect theme or perfect cake. I missed out on the joy of truly feeling my newborn's tiny feet, hands, and little nose. I will never get those moments back, they are gone forever. My son will never experience the same level of attention to his birthday that his siblings did. I mourn for the moments I lost, but more for my little boy who deserved his own custom made cake.
I hope as he gets older he has wonderful memories of his birthdays. I hope he never feels neglected or cheated because his mom wasn't the best.

  I will fight these diseases this year with all I have. I will celebrate both my son's birthdays to the very best of my ability. May they always know I love them and will never give up on being the mom they deserve. My children are the light of my life.

Weight Loss vs Ankylosing Spondylitis........Who Will Win?

  I keep saying I am going to focus more on my health. I have gained so much weight, I don't even recognize myself in the mirror. I am the heaviest I have ever been.

  My weight issues are contributed to by a number of things. If you have a chronic illness like ankylosing spondylitis, you know what I mean when I say exercising is a pain. Some days I do not feel like dragging out of bed, let alone exercise. On the days I feel well enough to exercise I usually overdo it, trying to make up for lost time. Which ends with me spending the next couple days in severe pain.

  Another contributor is my medicines. Several of my medicines have weight gain as a side effect. Just what I don't need! Why can't I have a medicine that has weight loss as a side effect?? Is there even such a medicine out there??

  Also, depression helps add to my unhealthy eating. When I start feeling down and stressed, I eat mindlessly. 

  I was barely 100 lbs when I married my husband. I actually truly believe I suffered from anorexia as a teenager. Although I was never seen by a doctor to be diagnosed with anorexia. I could eat almost a order of McDonald's fries and feel I had overeaten. I don't wish to be that small again as I can see how those years hurt my overall health.

  I'd really like to set a goal of 130-140lbs. I have to do this somehow. I need to do this for me and for my family. My husband thinks my pain would be less if I didn't weigh so much. I pray this will be true.

  So as of today, I am going to eat more veggies and fruits. I plan to drink more water. I have been trying to cut out sodas but the cravings get the best of me sometimes. I will update my journey every few weeks. Say a prayer that I can fight through this obstacle.

  Have any of you found a way to get the weight off while your body is fighting itself? Is there any exercises recommended for ankylosing spondylitis that will help with weight loss? What works for you or what definitely should be avoided? Comments appreciated.

Where Would You Draw The Line On Medication?

  Even as my doctor says it, I cringe....   

  Why do most medicines have those nasty, horrible side effects? 

  As my doctor explains, this new medication has been known to cause or worsen, Irritable Bowel Syndrome. I'm thinking... really, really??!! She has got to be joking. Why would anyone take a medicine that can instigate another disease.

  I mean, I'm no fan of stomach cramps or diarrhea. As a matter of fact, I experience that enough without the aid of a medication side effect. There are some rather embarrassing moments, I definitely wish I could erase from my brain.

  As I sit there listening to her voice I'm thinking no way, no thank you. I am NOT going to use that medicine. Nope, not this girl! 

  At that point my doctor checks my most recent lab work. She explains my current medication isn't helping my inflammation levels. She does a physical "feel" of the joints in my shoulder, elbows, hands, and feet. A majority of those are swollen and inflamed. 

  Come to think of it, my hips have been hurting so much they wake me during the night. Also my toes feel weird, kind of stiff. My fingers are so swollen in the morning it's difficult to move them. Plus, my neck is killing me after driving 45 minutes to this doctor's office.

  Well, that does it. In the span of this 20 minute office visit, I have decided diarrhea might not be such a bad thing. I might be one of the few who never experiences that not so lovely side effect. Fingers crossed!

  What the heck, this girl is going to try this new medication. I'm not sure where I would draw the line on side effects vs benefits. Thinking back I have already been taking medicine to wipe out my immune system. It can increase risk of infections and some cancers. The list is long of possible side effects.

  In the end, I think I would try most any medication to be able to enjoy time with my family. They are my world, my heart, and my reason to fight this disease.

  Where would you draw the line on a side effect? At what point would you tell your doctor, no?
  

When You Can't Work But Don't Have Enough Work Credits

  On top of dealing with AS, Fibro, Neuropathy, Osteoarthritis, and Scoliosis, I am very stressed about money.


  My family is struggling financially. In December 2016, I had to make the hard decision that it was time to give up my job. The fatigue and pain from my diseases and working was overwhelming. I would come home from work and go straight to bed. Some days, I would get up about 8pm and make myself a bowl of cereal or a sandwich. My mother lives beside me, she would cook healthy meals for my teenage son. Many days she would save me a plate, which was a blessing. Toward the fall of 2016, my mom realized how horrible my struggle had become and cooked every day for us.


  My husband works second shift, 3pm - 11:30pm. By the time my husband drives home from work, it's 12:30am. Therefore, he only saw me in the morning for a half hour or so before I left for work. It was a rough schedule, not being able to see each other. We made it work for 3 years but I don't think it would've worked earlier in our marriage. We've currently been married 28 years. Due to my husband not seeing me very much, he didn't realize how much my illness was affecting me. I think during his Christmas vacation was when it finally hit him. I wasn't getting better, even though I was taking weekly Humira injections and a handful of medicines daily. He became very worried.


  After leaving my job in December 2016, my husband and mother encouraged me to apply for Social Security Disability. I kept postponing applying, because my rhuematologist was changing me to Enbrel injections. I still had hope that the Enbrel would calm my disease down enough to return to work. Unforunately, I never saw any benefit from the Enbrel. My pain, fatigue, and other symptoms seemed to worsen if anything. Finally in August, after getting my lab reports which showed my inflammation levels were still very high, I applied for SSDI.


  In the meantime of waiting to hear from my disability application, I gathered my medical records from my doctors. I cried while looking through my records. I remembered each horrible flare; I remembered the visits before my diagnosis.


  In a few weeks I received a letter from Social Security Office, I had been denied due to not having enough work credits in the last 10 years. I am shocked because the reason I don't have the work credits is my disability and my love of my family. I had stayed home to care for my father, who suffered 6 years with lung cancer. After that my mother in law became very ill, so I took care of her until her death. I started a "job" after my mother in law passed away and held it until my illness forced me to quit. If I didn't have this disability, I would still be employed and earning more work credits. Somehow it just doesn't seem right to me. That's how I have ended up in my current financial situation.


  To add to the irony, I can't qualify for SSI either because of my love of my family. My mother and father in law are in their 80's. Each of them rely on me to write checks, since they are widowed. They both added my name to their checking account so I can sign their checks for their monthly bills. However, in the eyes of SSI those checking accounts are my resources. I would never use their money for my own personal benefit. SSI doesn't acknowledge that fact.  It's a saddening situation.


  I never will regret my time caring for my dad or my mother in law. I cherish being there to comfort them. I hope someone will love me enough to extent the same to me someday. Yes, we are struggling to keep our heads above water right now. My comfort is I love my family and know somehow, someway, it'll all work out.


  Best wishes for each of you fighting an illness today. Keep your head up or the crown falls Princess.

Ankylosing Spondylitis - My Social Planner

  This morning was one of those mornings, the kind where you would like to stay in bed all day, but can't.

  Normally, I try to not commit to too many engagements on the same weekend, let alone the same day. Ankylosing Spondylitis has taught me very quickly who controls my social agenda. As many of you with autoimmune diseases wholeheartedly know, our minds and hearts may be set on doing something but our bodies may say, "no way, not today".

  I had confirmed months ago, I would attend my cousin's wedding at 4 p.m. today. I was expecting I would have all day to get this ole body moving and ready to attend. Of course, it doesn't always go as planned.

  For several years, I have attended an annual Women's Conference in the fall. I enjoy these conferences very much and value the time with my friends and community. I found out a few weeks ago that the conference was today from 9 a.m. until 2 p.m. That's how you end up filling too many activities into one day when you have an autoimmune disease.

  I made it to both events but left both a little early. I would have very much liked to have stayed for the afternoon speaker at the conference. I also would have enjoyed time to catch up with family members at the wedding reception. When you have an autoimmune disease, you learn it's a juggling act. If I had stayed at the conference until 2 p.m., I would not have had time to take a half hour nap before going to the wedding. Without that small recharge I would have been suffering more tonight.

  I spoke with a lady at the conference who has lupus and a connective tissue disease. She was very inspiring for me. One thing she said was no one can really understand what you face day to day, unless, they have an autoimmune or similar disease. Even then, these diseases can affect individuals with such varying symptoms, sometimes we don't truly even understand each other. This lady said at one point before her diagnosis, she was in such tremendous pain she considered taking a lot of Aleve and just giving up. She praised God for helping her through that night and soon after found a doctor who diagnosed her conditions.

  I know there are probably some people, at the events I attended today, who think it's laziness that has a 46 year old woman cut her engagements short for an afternoon nap. I'm not sure that I wouldn't have thought the same when I was in my early twenties, before my whole world changed.

  I hope this blog will help someone understand the life of a person with AS and other diseases. I hope those of us who suffer daily with these unrelenting diseases can stay strong for each other. You never know when a kind word or understanding ear will make the difference between giving up or fighting onward.

  Fighting my body daily. Never give up!