Acute Back Pain

Having acute back pain.  Can't sit at the computer for very long.  Rheumy injected my spine & hip.  I'm a little better.  Still hurts to walk & sit up.  I'll write more later.

Taking the Fight to Whoever!

Well, school has started with a bang!  I am running to keep up with all the band activities.   I volunteered last weekend for something that has kept me in bed for 3 days!  When I informed the the parent that I could no longer do this I was met with hostility.  I in turn became irate and basicly told her off!  Told her about my disease process, and told her to "Google it!"  Come to find out her sister has Ankylosing Spondylitis as well!  So I picked the wrong person to educate!  Long story short, I apologized, she apologized and I am still volunterring just...differently.
Since that fateful football game I have been feeling terrible, so I called my Rheumatologist.  So I'm going on steroids and having lab work drawn (Yay...).  Hope I'm not flaring but I just can't get over this...thing.
Joined a new website ASRAUnited.com  Seems like a great site!  It will be nice to connect with others with this insidious disease.
I'm tired, so off to bed I go!  Later!
FYI: I am Face 427 on thefacesofankylosingspondylitis.com 

School's About To Start!!!!

School will start in 1 week!  I really hate for summer to be over.  I have enjoyed having an easy schedule and having time to relax!  Mainly I don't like being on a schedule!!!  I know kids need a schedule but I don't!  I don't like the regimentation school brings. 
Also my 16 year old's band stuff starts up.  That means early morning practice, football games, and band competitions.  That means having to rush and get to places when I am the most tired.  Climbing the stairs at the football stadium isn't much fun either.  Because Ankylosing Spondylitis is an invisible disease, people stare at me when I have to stop and rest half way.  In some ways I wish I had Lupus, at least my joints would swell, get red, & hot!  But with AS people just stare at you like "What the hell are you stopping for?!" and "Why do you have to have your husband help you up the stairs?" "What's wrong with you?"  To that I would like to answer "Plenty!!!" or "Would you like a list?"
On a good note my immunity disorder is getting better!  I'm not getting upper respiratory infections as often anymore!  That is a relief!
My father had his pet scan recently and he is CANCER FREE!!!  He called me, I couldn't believe it when I heard his voice, as soon as he got back from the doctor.
I'm getting tired, plus I have a migraine, so I'm going to bed.  Later! 

Today we dropped off our daughter at the airport to visit my sister for a week.  She should have a good time! 
Returned 2 weeks ago from my parents' home.  I brought my father to his radiation treatments for a week.  Then last week we were on vacation.  It was good to relax for a while.  I was exhausted though, the last part of the week.    I slept most of the day Saturday.  Feeling better today.
We went to the Farmer's Market on Friday.   I have never been to such a HUGE Farmer's Market!  They had EVERYTHING!  Somethings of which I had never heard!  We got an Israel Melon, Watermelon, peaches, Rainier cherries (for my parents), and strawberries.  But no blackberries!  I want some so badly!  Haven't been able to get any this year!  Guess its been a bad year for blackberries!
On the other hand,our muscadine grapes,  have been coming in by the pound!  I've already made jelly, so my dear hubby is going to try making wine!  Should be fun!  Going pick grapes!  Later!  :-)

Went to the Rheumatologist today.  My neck has been killing me!  I kept thinking I was having migraines because my neurologist told me that neck pain can be a migraine.  (Not if you have Ankylosing Spondylitis!) Anyway, my Rheumy injected my neck and OMGosh, does it feel better!  She was running extremely late (2hrs!), so I asked if we (my daughter & I) could go to lunch then return.  They said "Oh sure!  There's 2 people ahead of you!"  We went to eat and the Vet called and the dogs were ready to go too.  So after we finished lunch we went and got the dogs and brought them home.   Incidentally, on the way to the Rheumy and the Vet I got stopped for speeding!  There was no way I could fight it, I saw him and he saw me, so that was it!  The policeman was real nice and everything, I just hated getting a ticket!   Now I realize it was probably funny stopping a woman with 2 dogs in the car!  They kept barking at him and Forrest (my big one), kept sticking his head out the driver side window!  I could just see it: "Woman Stopped for Speeding, Police Officer bit my Woman's Dog!"
The pain is SO much better since the injection!  Those steroid shots are like magic!  I probably won't have much bone left as I age.  Steroids decrease your bone mass.  Having Ankylosing Spondylitis decreases your bone mass.  I'm on steroids quite often because of my Common Variable Immune Disorder. Steroids also increase your chance of developing Cataracts.  After going to the Ophthalmologist, I found out I have Cataracts!  (Not bad enough to require surgery, yet.)  So steroids are my friend and my enemy.  How else am I going to live with the pain and the recurrent sinus infections or Asthma flares?  I just live one day at a time and pray and hope for the best!
My daughter and myself are leaving to go to see my parents on Saturday morning.  I'm bringing them a co-op basket of produce.  I'm also bringing homemade Muscadine Grape Jelly.  I also have some frozen dinners I've made for them. 
My father has Prostate Cancer and we are each taking turns driving him to radiation.  He was driving himself but now he gets too tired.  So I'm going to give my sister a break.  It will be good to see them again, although I don't know how the week will go...
I have Muscadine grapes coming out of my ears!  I guess because of all the rain this year, we have a bumper crop!  I've made jelly and Dave wants to make wine!  Should be fun! 
I'm getting tired and need to rest, been going all day.  Later!

 
           

Haven't written in a while, sorry about that!  Blueberry picking was fun and successful!  I now have enough blueberries to last a lifetime!
I made Dave a gluten-free blueberry cake last night (with his help!).  It was a recipe from his grandmother, it turned out great!  It said to put the batter in a "tube pan".  I'd never heard that term before (it means Bundt pan), so I baked it in a 8X8 pan!  I talked to my mother later that evening and she told me it was a Bundt pan!  I have one, I've just never heard it called that before! Oh well, next time I'll remember!
Since my last flare up, which affected my shoulders, I've never gone back to where I was prior to the flare.  I was taking my NSAID and muscle relaxers, but no pain medication.  I want to go back to that condition.  When I see my Rheumy later this month I'm going to ask her if I will go back to that prior condition.  I hate taking the pain med because all I do is sleep!
Yesterday we went to a "Graduation Lunch" for our Goddaughter.  It was fun and enjoyable to see everyone again!  I became so fatigued though I could hardly keep my eyes open!  I rested my head on my husband's shoulder for a few minutes, and I felt rejuvenated!  Funny how a few minutes rest does the trick!  We were asked to go to their house after the lunch to visit, I really would have loved to have gone, but I was just too exhausted!  Bummer!
I came home and rested, I didn't nap, and felt well enough to go to Mass at 5 PM!  I haven't felt well enough to go to Mass in weeks!  The Mass was a joyful and very spiritual experience for me!  I hope I feel well enough to go next week!
At the end of June, I will be going to my parents' home to bring my father to radiation treatments for his prostate cancer.  Only problem is I get too fatigued driving the 4 hours to their home.  We are looking at flights as well as stopping half way and spending the night in a hotel, before completing the trip.  We will see.
AS complicates everything!  I don't want my daughters' memory of me to be of lying in bed!  I try to keep as active as I can.  I was doing well coping with this disease until the flare affected my shoulders.  That really knocked me for a loop!  I couldn't do the things I did before, like cooking or lifting anything.  I still am not back to "normal" but the pain has subsided.  The fatigue got worse after this flare, so I tire easily.  I got very depressed and went to see my therapist.  She helped me realize that I can still do the things I like to do, just differently.  I left feeling better and regained my positive outlook!  Gotta go for now!  Remember, this is all part of the fun of having Ankylosing Spondylitis!  :-)       

We went tubing.  The river was low so we didn't go very far, still it was wonderful and relaxing!  Couldn't take any pictures because the camera/phone would have gotten wet.  I didn't think of that!  My husband was the one that pointed it out!  So glad I married a smart man!!! 
Going pick blueberries today.  Surprisingly the girls are excited about it!  Thinking of all the yummy things I'm going to make with those blueberries! 
We had a nice relaxing day yesterday where we did absolutely nothing!  I napped so did DH.  My youngest went to a party on Friday night, slept over, then went swimming in the afternoon.  She was really tired when she got home!  Everyone slept really well last night! 
My shoulder is feeling better this morning!  My neck is hurting, but I've done some stretching exercises and its feeling better! 
I got my "I Am The Face Of Ankylosing Spondylitis" bracelet yesterday in the mail!  I was very excited!  I had my daughter take a picture of me wearing it!  I'll upload it just as soon as I can figure out how to do it!  :-/
I guess I better go get dressed and ready to pick blueberries!

Going tubing today.  Rose doesn't want to go.  That's really fine with me!  So I plan on having a wonderfully relaxing day!  Should be fun!  Gotta go make sandwiches and pack up!  Later!

Exercise, the Bane of my Existence!

My daughters are currently walking (WALKING!) to the convenience store for a snack.  I used to walk to the store for a snack when I was young.  Gosh, I was trying to remember how far away it was...had to be at least nine or ten blocks and up hill both ways!!!  I can't claim snow because, well, I grew up in Louisiana!  My sisters and I used to walk or ride our bikes everywhere!  It didn't matter how far because it was safe back then in the 70's a.k.a. the stone age!  We'd play outside till my mother called us in for supper.  During the summer we'd play outside after supper and instruct my mom to call us when it was time for our favorite TV show!  Simpler times... No technology or video games.  We had to play outside or read a book (God forbid!), because there was nothing else to do!  Childhood obesity wasn't a problem then.  I truly believe that our technology is killing us.  All the obese children and adults (I count myself among them!), are because we have machines or computers to do everything for us.  Kids sit and play video games now for entertainment.  If they want to play with someone else they just attach their video game to the internet and instant friend!  No playing outside anymore, it's not necessary.  My youngest daughter, Victoria, isn't as interested in video games as my oldest, Rose.
.Victoria is very out going, loves to be around people.  She very athletic with an adventurous spirit!  Like I was before Ankylosing Spondylitis.  She loves to run, climb trees, jump on the trampoline, swim, anything active!  I used to be like that, but because of the debilitating fatigue and pain, I don't like to move much.
Which brings me to my problem, exercise!  Exercise is supposed to be beneficial to Ankylosing Spondylitis sufferers.  Problem is I don't have the desire or the energy to exercise. I used to get up early and go religiously to my water aerobics class.  However, ever since Rose's diagnosis of AS, I have really quit.  At first it was because of the stress, then I just didn't want to get up!  All I wanted to do was sleep.  I think that is because I was so depressed and anxious about her diagnosis and getting through school, that I forgot about me.  I have been losing weight, 50 pounds so far, but lately I haven't been keeping track.  My plan for the summer is to get back on track.  Go back to regular exercise, keep track of what I eat.  These things require that I attend meetings, which I have been missing!  I know in order to take care of my husband and children, I must take care of myself.  It's not an option.  It's not something I can skip if I don't feel like it.  Now it is really life or death.  I won't die if I miss a water aerobics class but it will cause the "death", if you will, of my "life".  I won't have one.  The pain will be unbearable and my world will shrink to the inside of my house.  I don't want that!  Summer is fast approaching.  Last day of school is tomorrow!  So exercise I must, food plan I must follow.  Blech!
Retrospectively, before AS I was able to glide through life rather easily.  Now my life is full of schedules of medication, doctor's appointments, and the like.  I have to diet and exercise.  I have to keep my house cleaner as I trip over things on the floor.  If I fall I'm out for at least a week, that is, if I don't hurt myself.   Having a flare really interferes with my "schedule".  I usually don't exercise during a flare because I don't want to irritate something that already has extreme irritation!  Maybe I should, I don't know.  Something else to ask the Rheumatologist.   
I got a letter from Social Security about my disability hearing.  They will contact me when my hearing is scheduled.  I hope its not during my husband's week off or during the time we are driving to pick up/drop off our daughters for a visit with my sister and my parents.  I guess we will have to be flexible.  I hope my husband's boss is as flexible...
Now that I've solved most of the pressing problems of our country, I will close.  Going to lunch with my daughters, they get out at noon, to celebrate the end of school.  Doctor appointment for Rose later that afternoon.  Shopping for "beach boots" (aka swim shoes, a little term I picked up when we lived near the beach!), as we are going tubing on Friday!  My shoulder won't stop hurting, so taking it easy till then.  Don't worry I'll let you know all about it!  I'll take plenty of pictures, too! :-) 

FOCUSED INTENT: Murmuration - One of natures greatest and most fle...

FOCUSED INTENT: Murmuration - One of natures greatest and most fle...: "Murmuration" - One of natures greatest and most fleeting phenomena.

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What's happened since my last post...

What's happened since my last post of 8/2010?  A lot!  In January of 2011 I was diagnosed with Common Variable Immune Disorder.  Now I get infusions of Intravenous Immunoglobulin or IVIG, which I will call it from now on, every month.  For few months I was getting it every 2 weeks.  So in January 2011 I quit my job at Health South.  I stayed unemployed almost a year.
In December of 2011 I started working for Preferred Home Care.  I loved it there!  I loved my Nurse Manager, I loved my co-workers, it was great!  It lasted until that summer.  My Nurse Manager quit.  We got a new Nurse Manager and I don't quite know how to describe her.  Her personality rubbed everyone like fingernails on a chalkboard.  She'd argue with everyone.  She'd make mistakes, then deny she'd done anything at all.  Her clinical skills were poor.  My Nurse Manager couldn't start IVs.  That was a real problem since we were a Home Infusion Company!  IVs were all we did!  She pulled a patients PICC line out!  A PICC line is a "permanent" IV line, put in under sterile conditions, that stays in for up to 6 months.  This patient was near the end of his IV therapy and could have had it removed for good.  Instead my Nurse Manager pulled it out and he had to have a new one put in to finish his IV therapy!  He was less than happy I can assure you!  We had patients complaining left and right.  Patients the company had had on for years were calling the office saying they wouldn't let her in their home again!  Yet, Corporate LOVED her!  No matter how much people and patients complained, nothing changed.
In the meantime, my immunity was getting better and I wasn't sick very often anymore.  I started having what my PCP called "sinking spells". After my second or third episode, he drew lab work.  My SED rate, which measures inflammation, was a little elevated.  So he sent me to a Rheumatologist.  THE rheumatologist for my area of the country, the HMFIC!  He'd been published, he is a professor at one of the Medical Schools around here.  The BEST guy to see!  Yeah...  Mr Rheumatologist x-rayed every part of my body, drew a gallon of blood out of my arm, put me on Mobic and sent me home.
I return in about a month, after he's gotten records from all my docs.  (The Neurologist I was seeing at the time thought I was "drug seeking."  Wanting narcotics because of the way they made me feel.)  He tells me everything is normal and I have Fibromyalgia.  He doesn't treat Fibromyalgia patients, my PCP would follow me.  I told him the Mobic did nothing and my back was hurting.  He looked at me and said "I'm really sorry about that." and walked out.
I go home, in terrible pain now, but tell myself "this is how its going to be from now on."  I go see my PCP and they put me on Cymbalta and muscle relaxers.  It helps a little, but not much!
As I am lying back in my recliner one day, in pain, my phone rings.  Its the RN from my insurance company.  I just absolutely fall apart and even start crying.  I'm not a crier.  I tell her what terrible pain I'm in and what's happened.  She says the magic words "Have you thought about going to see another rheumatologist?"  Now I'm an RN.  I should have thought of that!  So I call around trying to get an appointment within the year and a Rheumy that sees Fibro patients!  Finally I find one that will see me and in a few days!!!
I go see my new Rheumatologist.  I tell her everything that's been going on.  She actually listened to me!!!  Then she looks at me and says "I don't think you have Fibromyalgia.  Something else is going on."  At that time I had a redness on my face.  Not the "butterfly" rash of Lupus patients, but still she doesn't like it.  She does a million x-rays, a bone scan, and draws a gallon of blood out of my arm.  I tell her "I'm not real interested anymore in finding out what's wrong.  I just want some pain relief!"  She writes me a script for Pain meds!  I go home and sleep for the first time in several months!
I can no longer remember the date of my diagnosis.  I'll have to ask at my next appointment.  I just remember her saying I was positive for the HLA-B27 gene.  (Mr. HMFIC didn't even TEST me for the gene!)  Then she told me I had Ankylosing Spondylitis.  I'd heard of it briefly before, but didn't really know what it was.  I started looking it up on the internet and continue to do so, not liking any of the information I find!
I quit my job in November of 2012, I just can't take it anymore and the call was killing me!  Now I am trying to get on disability.  I've got an attorney and well that will have to wait for another day.  I'm tired....