Forget the Facebook timeline! My AS Timeline!! By Meloni

Posted in The Blogs By Meloni, Week 19: Doctors on February 17, 2012 by Cookie Has A.S.

Having your rheumy tell you she might send you to a neurologist makes you think…hmmm I’ve seen one!  What was his name?  Where are those records.  The AS in the neck is pretty bad lately so, I got to thinking, when I fell down the stairs is when all this started!  So, let’s back up a sec.

In Jan of 2006, I took a nasty fall down a flight of stairs.  The good part was I was on my “rear” the entire fall, bumping down every single stair.  I did fling my right arm trying to stop myself—didn’t work.  OK-here goes-numbness in right arm was pretty bad.  So, my primary care (PC) Dr sent me to a neurologist.  After tons of tests, and seeing the ortho Dr at the same time, it was decided I’d have shoulder surgery.  STOP!  I now have the records (yes, in 2012) from the neurologists.  I’d like to share his “impression” of me–I guess that’s his fancy word for diagnosis.  OK–typing exact as my records state– “CERVICAL SPONDYLOSIS with disk disease”–first words he writes.  My MRI-at that time, he writes C4-5 asymmetrical bulge and narrowing, C6-7 and C5-6 protrusion.  SAY WHAT???

Not one doctor told me this in 2006.  NOT ONE!  I had shoulder surgery.  So, did I really need shoulder surgery? hmm makes you wonder doesn’t it.

Here’s my quick AS TIMELINE Jan. 2006-fell down stairs and started seeing neurologists and ortho dr (did physical therapy)

May 2006-diagnosed with spondylitis (but they forgot to tell me)

Nov 2006-Shoulder surgery (because I wasn’t getting better-duh?!)

2007 I don’t have records from this year–and memory is well…gone

2008-started having pain in ankles I could hardly walk and fingers were so swollen and painful.  Referred to Dr. Alan Gottlieb.  His diagnoses (have his records)–he says HLA-B27 positive but no signs of AS–fibromyalgia.  WHAT THE HECK.  Wouldn’t send my dog to this doctor.  Felt violated at the 1st visit.  So for the next year excruciating pain and a fibro diagnoses from Dr. Quack!  If you’re wondering HLA-B27 is the AS marker!!!

2009-I’m at my PC and she’s seeing how I’m doing–not good, now let’s add more joint pain (lower back)–ok, let’s re-read that statement–I said JOINT pain.  Not muscle aches.  Learn the difference Dr. Quack.  PC says, you don’t have Fibro–you have ankylosing spondylitis–ankah what?  Yes, this is the 1st time I hear these words.  So for 3 years, I’m NOT being treated at all for what I have.  Can we even back up a bit more and say this runs in my family.  My younger brother has it and already has both hips replaced and that I TOLD THE DOCTORS THIS!  She refers me to another rheumy.  Dr. Paul.

June(ish) 2009-Dr. Donna Paul starts treating me for AS.  I’m immediately put on methotrexate (yum) and then we add humira.  I start seeing some improvement.  Now, don’t get excited, I said some.  I’m feeling better just knowing what I have now.  Even though there is no cure and it’s a degenerative disease.  I see her for several months into the beginning of 2010 then—All the sudden Dr. Paul is gone—just left.  I liked her.  What the heck.  Where’d she go.  I’m here for my appointment.  The doors are locked.  I mean she up and left!!!  Give me my records!!!!!!!!!!!!!!  Tell me something!!!   With no records, nothing, it’s off to find another rheumy.  I’m at her office for my appointment and she’s GONE!

May 2010-I see Dr. Elizabeth Butler (Emory).  I tell her what I can and I’m on humira, etc.  So, we start over.  I like her too!!!  So, glad to see a Dr who “knows” AS.  Who cares.  She’s not happy with my AS and switches me to enbrel/methotrexate and tells me that I have an aggressive AS.

In the beginning of 2011 I stop all work and try and get this disease under control.  In March of 2011 I start Remicade infusions.  I’m finally feeling I can “do life”.  No mind you “doing life” is totally different than my “doing life” before AS.  Insurance change–out of network–WHAT?  Please no.  I don’t want to change doctors.  I pay out-of-network fees until the new rheumy can see me (November 2011).

2012-Today–numbness in right arm is back.  Headaches all the time…could this be the neck?  hmm  Could my AS have been slowed in 2006 if I’d been given a diagnoses and medication?  There’s more to this story!  It’s my story.  My life.  I’m in charge.  Thinking I’ve found Dr. Paul in Alabama—trying to get in contact with her.  I WANT MY RECORDS.  They are mine.  Where are they?  In a dumpster somewhere?  Dr. Stark, new rheumy, I’ve not made my mind up about him just yet.  I just wish I could stay with Dr. Butler.  We’ve upped the remicade and it seems to be working for now.  My eye is better.  Now this neck and headaches.  oh, and shoulder pain and numbness in the right arm.  Well, going for a MRI of the neck.  We’ll compare with 2006 and see where I’m at today.  For now–I wish my insurance hadn’t changed, but thankful that I have it.

To all of you—YOU are your Dr.  Get your records.  They are yours.  Stay on top of your health.   And don’t keep your disease a secret.  I did for a few years.  I think mainly because I didn’t know what I had.  So, I kept the pain a secret.  Now, I know ankylosing spondylitis (AS) and read about it and talk about it…seems the more I know, the more I learn doctors don’t know that much.  It’s not your grandmothers arthritis folks.  Don’t act as if we all have it when we get older.

I have auto-immune arthritis/ankylosing spondylitis disease.  It may be invisible to you, but to me, I see it 24/7.

AS has my body, but not me.


Masquerade of Words up catch up blog, probably more of a ramble…. By Jackie

Posted in The Blogs By Jackie, Week 14: Coping on February 9, 2012 by Cookie Has A.S.
Trying to think where to start, Coping: coping on many levels.
There is the practical stuff, learning how to do everyday things by using other parts of your body for strength, eg when vacuuming using an upright machine, we usually push from our backs, but by using the thighs to push with, is much easier on our backs.
Always bend down by bending the knees (unlike me who bent down to pick up a bit of fluff while vacuuming, and didn’t use my knees and simply heard the crack as my back broke yet again)!
When making a bed always use the thighs as much as possible, to push the bed for example.
When organising your kitchen try to make sure that everything you use on a regular basis is in a cupboard you can reach easily, as you don’t want to be reaching/stretching any  more than you absolutely have to. Have ovens fitted in where you can use them with ease, and not have to hold a heavy dish and bend down to put it into the oven, or to lift out of it.
In the bathroom try to have handles you can use to hold onto while in the shower, especially good for getting out when you are all wet!!!! And a grip for getting out of a bath. You may not feel you need measures such as these yet, but the day will come when you may not find the essential, but probably find them to be useful.
Again in the kitchen think of the weight of cooking utensils, there are some fabulous cooking pots and casseroles around, but as well as being very expensive, they weight a ton, and that’s before there is any food  in them. This may seem very simplistic, but these things can be a real nuisance if you haven’t thought it through. It also really helps when you can do these things for yourself and  have to ask for help as infrequently as possible.
Then there is the whole question of how to make those around us as aware as possible to our situation. The problem, as we all know, is how to make people really understand what life is like. How one day we can be quite fine (or at least manage to appear to be!) and the next, after doing nothing ‘wrong’ we can be unable to carry on, unable to function without it being obvious to all. We try to convey to them about the nasty visitations we often get in the night, the one with the baseball bat, cricket bat,  truck…… but they find it rather difficult to comprehend. The fact that we can be totally battered, or run over by that truck!, or a shoulder just battered, or a knee, or a foot, lower back, neck, well you know the story. I keep saying that I think the basis is that most people consider illness to be something to get (catch.. whatever) it is diagnosed, treated, then you go through a period of recuperation, and Bobs your uncle! Our reality is we have lots of periods of being very unwell, eventually  it is diagnosed – usually years later – we receive treatment and then go into the occasional period of quiet. Sometimes the quiet times can last for years if you manage to get great meds organised (quiet meaning you can continue living a fairly normal life and coping) but then something comes along to stop you in your tracks, whether it’s a new place of pain, whether the meds just stop being so efficient and you need to start all over again to reassess your situation and try a new regime, whatever, but it means that their notion of us being ‘cured’ is shown yet again to be all wrong.
They seem to find it very difficult to accept there is no cure, that there is no overdoing it, doing the wrong thing for us. Yes we probably do more than we should when we can – just cause we can. It doesn’t happen often ok, so go easy on us!! But there is no guarantee doing ‘too much’’ will cause us exceptional pain, sometimes it does, sometimes it doesn’t, and you need to believe us when I say that you should try not to ‘accuse’ us if we end up paying for a full day out, a day full of housework etc. We have gone ahead and done a lot more than our normal after weighing it all up, and balancing up any possible payment against the sense of achievement we are able to enjoy now and then. To have behaved in a normal way!!! We give ourselves a row for doing too much on the various AS sites, but it is done tongue in cheek as we all understand the enjoyment of having the occasion high and low rather than never ending blandness.
Yesterday I was full of the cold feeling miserable with lots of aches etc and a bit fed up. I didn’t get up till later, didn’t have a shower and generally was just a misery, so today feeling a little better I had a lovely long hot shower, washed the hair, got dressed, even put on some red lippie just to cheer myself up. I couldn’t have done much more, but I did enough to feel the difference from the day before, and hopefully tomorrow might be even better , might even get outside!
We have to work with what we have on any given day. We will let you know, though if you are very observant you might find you can see the little signs to guide you into how to deal with us!.
I could ramble on a lot more, but my hands are grumbling now, despite my natty fingerless gloves, so I will finish now.

Doctors are people too! By Ricky

Posted in The Blogs By Rick, Week 19: Doctors on February 4, 2012 by Cookie Has A.S.

This might seem a bit of an erroneous title to some of you, but I have been reliably assured it is accurate. As hard as it is to believe they really are people too, just like me and you!

OK sarcasm aside, sometimes as a patient it can be quite difficult to be less than respectful to our doctors when things fail go the way we had hoped. With conditions such as Ankylosing Spondylitis (AS), like many other chronic illness’, we see our doctors regularly. Especially our Rheumatologist’s and General Practioner’s. When symptoms get worse, beyond tolerable, manageable or prediction, our doctors get put in the firing line as the barrier to between pain and relief.

Image taken from

Pain by it’s very nature makes us change our behaviours, but we may not realise all the time just how much we do change. It is human nature to get frustrated about something we desperately want to change, but can’t. Our doctors share this frustration with us at times, especially when it comes to the lengthy wait in applications /funding for anti-Tnf drugs. Our doctors are compassionate towards us in our frustrations, but when frustration turns to anger, resentment and obsession then it would be unreasonable to ask them to constantly tolerate this behaviour. These issues are never black and white. Blame can not be entirely put on the patient for this breakdown in the relationship, nor would it be fair to blame the doctor solely for this. Like with any relationship, the doctor-patient relationship needs compromise and understanding, with open and honest discussion. Communication is as we all know key to making any relationship work well.One thing I have noticed over the last year or so is that social media can help keep this relationship open and honest. Social media like Twitter has become much more diverse than the platforms original intention, with health care professionals using it to reach out to a wider audience of patients in order to assist in the greater good. Of course sometimes this is negative, as those in need are manipulated, and sold products / unsafe practices from ‘quacks’ which often compound health issues, and offer no real progress in treatments for conditions. However these ‘professionals’ (dare I call them that)are the minority, with the substantive majority in it for the right reasons.You don’t have to look far to find doctors with a good social media presence, who have an active relationship with there patients. For any AS or Arthritis sufferer you need not look any further than Dr Ronan Kananagh, Dr Raj Sengupta, or Dr Shashank Akerkar to get valuable advice and information. Someone I have personally always enjoyed following on Twitter is Dr Christian Jessen, who holds regular sessions on twitter to answer general medical questions, often with a sarcastic undertone, but providing an entertaining and sometimes alternative answer to intense or trivial problem.

At the heart of it, the relationship you have with your doctor, and all other health care professionals for that matter, will often have a profound effect on you physical and emotional well-being. It serves all parties best to be open and honest with each other, with communication key to enhancing your relationship. We need to bare in mind that doctors are people too, and sometimes may need help and information from you, just as much as you do from them. So be nice to your doctor, and I’m sure they’ll be nice back, after all they just want to help.

Negative experiences always are easily recalled from our memory, but what about positive ones? What positive stories do you have about your relationship with your doctor? Have you met someone that has changed the way you manage your condition, or changed how you think of doctors and health care professionals? Are you a doctor trying to do just that? I’d like to hear your thoughts and comments.


Sunday’s Small Bite: Musical Chairs By Ricky

Posted in The Blogs By Ricky, Week 09: Social Outings on February 4, 2012 by Cookie Has A.S.

Once in a while I take a 150 mile / 3 hour trip up the motorway to my home town to see my family and friends. This is generally pretty exhausting work as I ferry from one household to the next, being fed biscuits and drinking tea at every stop. It’s a hard life I know!

This time was slightly different, given two reasons. Firstly it was the first time our new addition to the family had visited my home town. So in the most part everyone came to us and formed a somewhat disorderly queue, in which they proceeded to pinch my son’s chubby cheeks, and played baby pass the parcel as they each took turns to have a “cuddle”. After the novelty had wore off everyone proceeded with the main reason we had a family get together, and that was to celebrate my parents 30th wedding anniversary.

With all the family together the chatter started to get louder, the arguments got fuelled, and the young children caused mayhem. In short it quickly became a routine family get together.

Lately my Ankylosing Spondylitis (AS) hasn’t been playing nice, so the 3 hour drive didn’t make it too much happier. Having a good sit down was certainly needed. Despite the abundance of chairs at my parents house, with a family as large as mine they soon get taken up. After the buffet the musical chairs began. Here lay my conundrum, who would take the last chair? The young pained AS family member, or the pension aged osteoarthritis family member? Tough call.

What would you do? Flip a coin? Who gets the chair? Would politeness take over so you offer it away? Or would you agree on some time share option?

What would you do?

In The Mirror…About to Break…Worthy…Not This Disease…I Am Dance! By Dana

Posted in The Blogs By Dana, Week 12: Self Esteem on January 23, 2012 by Cookie Has A.S.
This satisfies the MOWer’s blog topic: self-esteem!
When I first began belly dance class, it was at night in the neighboring apartment complex. I had never attempted it before. I had my shoulder replaced in March 2010 and began belly dancing in August of that year. It was difficult for me at the time. I can’t lie. I had already finished my physical therapy but still did not have full range of motion in my right shoulder. I didn’t have a lot of flexibility everywhere else~back, neck, hips, and legs. I also didn’t have a lot of self-esteem. If I was going to go back to dancing, I was going to have to be that same person that held nothing back and just let loose. If I couldn’t be that person, then I was going to have a hard time dancing. I also knew if I couldn’t allow myself to dance again, that would be like a death sentence.
I only went to the apartment complex belly dance class 4 times. Then I thought it just wasn’t for me. I felt self-conscious and as if I just couldn’t keep up. I thought for sure everyone was watching me and wondering what was wrong with me. I just knew that I stuck out as someone that couldn’t dance because there was “something wrong” with me. I felt every one’s eyes looking me over, up and down, and through me. I couldn’t go back…I failed!
A couple months later, a bunch of people went out for my birthday. One person that works with my hubby, who happens to be a long-time belly dancer, gave me a gift certificate for class with the same dance instructor that was at the apartment complex but at a dance studio. I thought I should give it another try…
Meanwhile, we adopted our son Michael. We brought him home, and we got settled. Then I returned to belly dancing once more to give it another try. I felt better about it this time for some reason. I was stronger. My right shoulder’s range of motion was back to normal, and I was feeling pretty good physically. I began in February of 2011 when Mick was only 2 months old. I started in the Saturday Beginner Class. At first, it was a little hard, but not as hard as it once was when I was going at night to the apartment complex classes. I felt like maybe I could catch on faster now that I was physically feeling better. By the end of that first class, I had a confidence that I had not had in soooooooo long! I really needed that class! I had my friend Ang come visit from out of town, and she joined us for one class to learn the very end to our dance. She caught on extremely quickly, and she did an awesome job especially considering that she had never taken a belly dance class ever. At the end of that class, I took one more Saturday Beginner Class, and then was moved up to the Intermediate-Advanced Class!
I couldn’t believe it! By the time I left for my brother’s wedding in April, 2011, I had already completed my first Intermediate-Advanced Class! I had no problems keeping up either, which made it so much more enjoyable and worthwhile. I began taking both the Beginner and Intermediate-Advanced Classes together so that I could take more than one class at the same time. I fell in love with belly dance!!!!
Just last weekend (January 15th), our belly dance studio had a performance. We were asked to get together with other people in our class in November to perform a dance or by our self to perform a solo dance in the show. I was asked by 5 different people to do a dance with them. Talk about a boost in your self-esteem! You know that when others ask you to dance with them, they appreciate your talent or else they would not ask you to dance with them. I was honored and excited to begin practicing. Of course, I was going to be out of town for a lot of the holiday season which meant that I would miss a lot of practice time, so I opted out of the January performance. I told everyone that I would love to dance with them in the spring performance in March or May.
The holiday season has come and gone so quickly. We returned from visiting family in St. Louis, and were ready to get back into our normal routine again. I had made an appointment with my hip orthopaedic surgeon way back in November to see him on January 4th. I had been having some problems with the right hip~clicking, sticking, popping, pain, grinding, and I feared that it was near total collapse.  My fears were actually made true when I was told that the right hip could collapse totally any moment now. I am continuing to belly dance though until I can no longer do it physically. I went to the performance eleven days after my news from my orthopaedic surgeon. I cheered on my fellow classmates.
Two days later, I went to my belly cardio class, which is fast paced and super-charged fun! I danced my body and my heart out as if nothing was wrong with me physically. I told no one in my class about my hip. I just wanted to be “normal,” to feel “normal,” and to only have people look at me for how I danced because they liked my dancing! OH, I danced as though my life depended on it! I held my head up high and my shoulders back! I was so proud of myself! No one can make you have self-esteem, it is

The music began…I watched myself dancing in the mirror next to all the other women and young ladies in my class…I couldn’t even tell…I don’t think anyone could tell…I truly couldn’t tell…I moved my hips, then my shoulders, and I could keep up with everyone in the class~old and young alike…No one even knew I was about to break…No one knew I was less than perfect…it looked as if I was afraid of no one or nothing…I gave the impression that I had so much spirit, brevity, courage, spunk…I obviously feel comfortable in my own skin…I know what I’m doing…This is so right!…I am worthy!…I am a dancer!…I am dance!…I am not this disease…it doesn’t define me!…I am worth so much more!…

You don’t wake up one morning and say, ‘I will become a dancer.’

You wake up one morning and realize you’ve been a dancer all your life,

And you say to yourself, ‘I am a dancer.’

‘I am dance.’

I Have The Best Friends Anyone Could Ask For…I Don’t NEED Anything More! By Dana

Posted in The Blogs By Dana, Week 11: Need on January 20, 2012 by Cookie Has A.S.

This blog post will fulfill the the MOWer’s blog carnival topic “NEED.”  When I think about the word “need”, I automatically think about the word “want” as well. Many people tend to interchange these two words as if they have the same meaning, and in fact, these two words are very different in meaning. The word “want” is defined as:

1. desire something: to feel a need or desire for something

“We want a new car.”
2. wish something done: to desire to do something or that something be done

“He wants his steak well done.”
3. miss something: to feel the lack of something

“After a week on the road, I want my own bed.”
4. wish somebody to be present: to wish to see or speak to somebody

“Someone wants you at the door.”
5. seek somebody as crime suspect: to seek somebody in connection with a crime ( usually passive )

“wanted for two felonies”
6. desire somebody sexually: to feel sexual desire for somebody ( informal )

So when you “want” something, you could replace the word “want” with any number of these words/phrases: desire, wish for, would like, feel like, crave, covet, yearn for, hanker after, be after, be looking for, hope for, aspire or fancy.

When you “need” someone or something, the definition changes:

1. transitive and intransitive verb require something: require something in order to have success or achieve a goal

“Do you need any money?”
2. be necessary: used to indicate that a course of action is desirable or necessary ( used in negative statements )

“You don’t need to thank me; I’m happy to help whenever I can.”
3. transitive and intransitive verb deserve something: to deserve something, especially as punishment ( informal )

“Those troops need to be shown who’s boss.”
4. intransitive verb to be essential: to be essential or necessary to something ( archaic )

Therefore when you “need” someone or something you can replace the word “need” with:  demand, require, call for, necessitate, take, have to, must, should or ought.

When I think of wants and needs, I think of a desire (want) to fill what’s lacking or absent vs. something essential or necessary either to survival or something more basic, such as a requirement (need) to complete a recipe.

So why am I going to such extremes to show you the difference between wants and NEEDS? Well I think it’s important for everyone to know that food, air, water, love and shelter are needs and that candy, ice cream, shoes to match every outfit, and a designer purse are all WANTS.

In my life, just like in every one’s life, I have a WANT list. Many people make the list around the holiday season for loved ones to know what to buy for them. I make my WANT list more so to realize that material things are nice to hope and wish for, but they are definitely not the most important things in this world. I put things on my WANT list like outfits for belly dance, velour jogging suits, I-PAD, smart phone, new shoes, hair accessories, new furniture, new TV, etc.

Now to take this in a little different direction…I went to my hip orthopaedic surgeon on Jan. 4th because I was having increased hip and groin pain. My right hip was sticking more when I went from the seated position to the standing position. I was extremely concerned because 8 1/2 years ago, this is what it felt like right before my left hip completely collapsed. It collapsed in August 2003 and was replaced December 22, 2003. I began to prepare myself for what the doctor was going to say, all the while hoping that he would end up telling me that it was still the same as it was in May of 2011.  Well, my fears were correct. It is just about to collapse. The hip is a ball-in-socket joint so the hip is able to move in a full circle inside the socket. For me, the socket is resting on the ball, which is already flattened (not round), and the ball has a crack all the way through it. Imagine what the pressure is like on that ball! With all that pressure and a crack all the way through, it does not take a genius to figure out that it could collapse at any moment!

When I found this out, I didn’t freak out at all. I had prepared myself for this, and we knew this was going to happen sooner or later. I was prepared to an extent, but you just can’t prepare yourself for that specific day to be told that you NEED to have your hip replaced as soon as possible. I WANTED it to be when my son Michael was old enough to feed, dress, and bathe himself, but perhaps that is asking too much. Ideally, we would be in a city with lots of family and all my friends to be able to jump in to help us out, but again, that just isn’t in our cards. It would be super if after this hip replacement, I would not NEED anymore joint replacements. Sadly, I am still playing the waiting game with my left shoulder and both of my knees, not to mention that joint replacements do not last forever. They are also replaceable. My left hip is now 8 YEARS OLD! I was told it would only last about 10 years. OMG! I do not WANT to have a hip replacement done two years apart, even if they are on two different legs.

I WANT the surgery to go smoothly without complications~no problems with infection, placement, blood pressure, etc. I WANT to heal quickly. I WANT to be able to have physical therapy that restores my physical activity and range of motion to normal level. I WANT to heal in three months so that we won’t have to hire someone to come into our home after my hubby goes back to work for the fall semester. I WANT this new hip to make both legs equal in size. I WANT to get rid of the pain. I WANT to be able to return to belly dancing relatively quickly after the hip replacement~told you I was a type A personality! I don’t WANT to have to start all over again with walking, going up steps, driving, swimming, lifting my leg, bending my knee, sitting, standing, riding a stationary bike, then slowly lifting things, then going back to a normal day of cooking, cleaning, taking care of a baby (diapers, bathing, feeding, playing on the floor, chasing, carrying, etc.).

I NEED help with my son who is now 13 months old. This is what is giving me the most anxiety, however, we have it all planned and everything is in the works. I go in for surgery on May 10th, and my mother-in-law arrives here in town on May 8th. She is off work all the time on Tuesdays, Wednesdays and Thursdays so to come in town she will take her vacation days in chunks. She will start her days off May 11th through the 14th, then the 18th through the 21st, then the 25th through the 28th, and so on…She will be here for the majority of May and most importantly on my surgery day and while I’m in the hospital so my hubby can be with me in the hospital while she’s with Michael. I will still NEED help in June, July and August. In June, my parents will figure out their schedules to come here. I have lined up others to come in the other months. In August, we will fly to St. Louis so my hubby can go to Memphis for a bachelor party. This way, I will have lots of family and friends to still help toward the end of my recovery. I have put Mick on a wait list for full time daycare for the summer months. If we struggle at all, we will hire a nanny to help with Mick’s care. After May, I should be doing most of my own care myself except driving and bathing. I will still be unable to lift 10 pounds, so no lifting up Mick! That will be the challenge.

Anytime you have an illness or surgery that prevents you from taking care of yourself and others like you normally do, you are forced to rely on others. Although I have been through a hip replacement surgery before and a shoulder replacement as well (as a matter of fact, I have had 9 surgeries in all plus this one now). We have been away from family and old friends for 7 of these surgeries and have done OK by ourselves so far. The thing is that we have never had a child until now. So now we especially NEED the help of others for the sake of our son! Well, we have not had to even ask a single person for help.

I find it interesting, and mentioned this in my blogtalkradio show, that when you have really wonderful, true friends who know that you are in NEED of help, they tend to pass the word on to everyone they know that you are in NEED whether they know you or of you or not. They tell their friends, their friends’ friends, their brothers, sisters, moms, dads, uncles, cousins, church members, members of their book club, people that serve them coffee, etc. Then all of a sudden, you are getting dinners from people that you think are coming out from under the rugs.  Well, they actually aren’t coming out from under the rugs. These people are coming to help you, because of people that love you very much. They know you are in NEED because of these beautiful, loving people.

I must have the best friends anyone could ask for! I have had so many friends and people I hardly know or have never met until now offer to help us out during the surgery and after the surgery and even now since I am having difficulty with my range of motion and getting around. Thank you, Angela and Rob, Kelbi and Sam, Susan, Samantha, Samantha and Troy, Debbie, Sarah, Rachana, Grace…and family~Mary Lynn, Mom, Dad, Ricky, Beth, Debbie…and my online friends as well who cannot help in person but in spirit and with support~Cookie, Brenna, Wendy…oh gosh there are so many of you, I could go on and on…if your name isn’t on here it is written on my heart! You must know that with friends like you all I don’t NEED anything more!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I truly love you all! Isn’t it wonderful to know you are NEEDED? Guess what? You are also WANTED! I chose you all as my friends, so you all are NEEDED and WANTED, both such great honors!

How Do I Know I Have A.S. By Dana

Posted in The Blogs By Dana, Week 10: Symptoms on January 19, 2012 by Cookie Has A.S.

This is my next entry to post for the MOWer’s blog. The subject is Symptoms. Wow! What a topic!

If you get symptoms of a cold, you see your internist, primary or family doctor. Symptoms of a cold are pretty simple and well-known: stuffy, runny nose, scratchy throat, post-nasal drip, etc. It’s interesting, but if you tell someone you have a cold, they know what symptoms you have already, and there are the traditional treatments as well. You can take a decongestant, drink tea with honey and lemon, take Tylenol if you run a fever or if you have a sore throat even. For all of us with spondyloarthropathies, symptoms can be as different from each other as night and day, as hard to notice from one person to the next, and often stump doctors, even those that specialize in our rare problems~the rheumatologists.
I have been dealing with what I thought at some points in time were unrelated symptoms, then at other times began to swear up and down that everything I have been through in all my years have been related to the spondyloarthropathies that I (will) have been diagnosed with finally! The most difficult issue with all of this is that when you go to the doctor with 1 or 2 symptoms at a time, the frustration will blow your mind. It isn’t cut and dry. There is no certainty that your doctor will give you a diagnosis or even treat you for that matter. Meanwhile, you are trapped in a world of pain, weakness, disability, loss of your old self, and a feeling that you could even be losing your mind! One thing is for sure, no matter what symptoms you end up with if you are lucky enough to have one or more spondyloarthropathy, the physical symptoms will be there, and they might be similar to those you meet in the same situation, but you may also notice that they all end up questioning their mental state! Yes, it’s true!

When you have certain physical symptoms and no lab tests or x-rays or similar tests to back them up, doctors begin to question automatically if you really have these physical symptoms or if they are manifestations of something else going on~depression, anxiety, a psychiatric condition, or perhaps you appear to have drug-seeking behaviors because you are showing no real signs of pain but wanting something for pain! Well, with all of this, it is only natural to begin questioning yourself, “Am I really feeling these symptoms? Is my neck really this stiff? Is my lower back hurting so bad, I cannot sleep at night? Are the bottoms of my feet so painful that if feels like I am walking on hot coals? Are my joints really so stiff and sore that I can’t move them for 2 hours after I awaken in the morning?” When we can’t really answer yes or no definitively, it gets pretty scary for us!!!

The symptoms are real, don’t get me wrong, and I am in no way trying to make them seem unreal or to make light of spondyloarthropathies or their symptoms. After all, I am a person with spondyloarthropothies, and I know how real they are and that the symptoms are definitely REAL!! So now let me just talk to you a little bit about what I had to go through to finally get someone, anyone, to listen to me about my symptoms. Spondyloarthropathies tend to attack the body’s major joints, primarily were ligaments attach to bone. Like myself, many who suffer from a spondyloarthropathy condition are likely to experience pain and reduced mobility in the ankles, knees, hips and lower back that is much more significant in the morning or when waking. These symptoms may become less severe as the day progresses and have often been much less severe following exercise. Patients, like myself, suffering from spondyloarthropathy may also experience pain or stiffness in the shoulders and wrists that follows the same progressive improvement in severity as the other joint pain. Patients may also experience pleuritic chest pain which is characterized by pain in the chest area that may or may not be accompanied with breathing difficulty. It also can be due to costochondritis, which I have often and is very, very painful!!! This symptom alone is not enough to diagnose a spondyloarthropathy as this form of chest pain is also a common symptom of pneumonia, viral illness, a pulmonary embolism, heart attack, lung cancer or a pleural tumor. For that reason, any chest pain should be considered serious and warrants a doctor’s immediate attention for further testing to rule out anything that is critical and must be addressed immediately.

Weight loss, fever and fatigue are also common symptoms that present with all of the spondyloarthropathy conditions. I would say that for me, in the earlier stages, weight loss was severe. Then I began to gain weight as the disease progressed. Fever and fatigue has been around for as long as I can remember. I have daily fevers, low-grade, in the late afternoon and during the night. Fatigue continues to be a problem for me. Although medications have helped, I still continue to get exhausted and tire easily. I have very little energy, and I also do not sleep well which only makes the problem worse. Some spondyloarthropathies may also cause what is commonly known as sausage digit–a swelling of the fingers or toes. I had the sausage digits on a couple of my toes, which finally went away after starting on a biologic–Remicade. Some patients will also suffer from a heart murmur that will need to be monitored by a doctor as well. I have a history of a heart murmur that comes and goes.

Rheumatoid arthritis is likely the medical condition most commonly confused with spondyloarthropathy but is generally able to be ruled out by tests that reveal the rheumatoid factor is not present in the patient’s blood. Of course, this is not always the case because even those people with RA do not always test positive for the rheumatoid factor. Also, since it is quite possible that spondyloarthropathies run in families, a patient’s family history is also a good indicator of whether or not their condition is a spondyloarthropathy or rheumatoid arthritis. Again, this is not always true either because many of us have no one in our families with a spondyloarthropathy. We do not know, however, if this is the case because there truly is no one in our family history with a spondyloarthropathy or if there is a family history, and perhaps no one ever did anything about it~diagnosis, treatment, etc.

Initially, a patient suffering from spondyloarthropathy will experience pain or stiffness in the lower back; especially in the morning. That pain or stiffness will often gradually feel better throughout the day or following a period of exercise. Fatigue is also a common indicator that someone is suffering from this condition. They may feel worn out more quickly than previously or may feel tired much more often. In time the pain and stiffness in the lower back will spread further into the lower back and the buttocks. Treatment will likely not eliminate the symptoms entirely but should allow relief and prevent the condition from progressing further as quickly. Nothing has been proven to stop the progression of the condition entirely, but treatment will at least slow down the process. For many women, the first symptom is pain and stiffness in the neck, before the lower back, which does not mean that the lower back isn’t experiencing any problems. Many times, by the time, they feel symptoms in the lower back, the damage is already severe.

Because a major component of the eye is collagen just like the ligaments, tendons and tissue within joint spaces, it is reasonable to think that the eye would also be affected by the symptoms of spondylitis just like the joints. Thirty percent of people with spondylitis have had or will develop a potentially serious inflammation of the eye called iritis. (Acute anterior uveitis and iridocyclitis are additional medical terms to describe iritis.) I have had iritis/uveitis four times. Three of the four times I knew what to look for, but the first time, I didn’t even know that the inflammation was occurring. I was at my ophthalmologist for my yearly check up when it was found. This condition can cause blindness if not treated properly, so it is essential for you to recognize its signs and symptoms , and understand the important role you play in your eye health care. Symptoms often occur in one eye at a time, and they may include redness, pain, sensitivity to light, and skewed vision. By using a slit-lamp microscope, an ophthalmologist or specially trained optometrist can distinguish iritis from other causes of eye redness (such as from an allergy, trauma, or viral infection).[]

In a minority of individuals, the pain does not start in the lower back, but in a peripheral joint such as the hip, ankle, elbow, knee, heel or shoulder. This pain is commonly caused by enthesitis, which is the inflammation of the site where a ligament or tendon attaches to bone. Inflammation and pain in peripheral joints is more common in juveniles with ankylosing spondylitis (AS). This can be confusing since, without the immediate presence of back pain, AS may look like some other form of arthritis. Many people with AS also experience bowel inflammation, which may be associated with Crohn’s Disease or ulcerative colitis. Advanced symptoms can be chronic, severe pain and stiffness in the back, spine and possibly peripheral joints, as well as lack of spinal mobility because of chronic inflammation and possible spinal fusion. []

I have had symptoms of inflammatory back/pelvis pain, unilateral or alternating buttock pain, enethesitis–inflammation where a tendon or ligament attaches to the bone, peripheral arthritis, arthritis of the small joints, heel pain, fatigue, the scaly patches on the skin caused by psoriasis, skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance, small indentations, lifting and /or discoloration of the fingernails or toenails, fingernails and toenails which may become thickened and crumble as if infected by fungus, pain and swelling in the joints, pain and stiffness of the spine, especially after prolonged inactivity, fever and chills, cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating, mouth ulcers, inflammatory eye conditions of the eye such as iritis/uveitis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. I was told that I have sacroiliac joint involvement. I was also told several years ago that where the spine meets the pelvis looks like it was crushed in an automobile accident when I had an MRI done. I never had my pelvis/SI joints crushed in an auto accident.

There are several types of spondyloarthropathies, and a big difference is age of onset and which sex it affects more. General onset of AS commonly occurs in younger people, between the ages of 17-45. However, it can affect children and those who are much older. AS is more common in men, but occurs in women as well. Most individuals who have AS also have a gene that produces a “genetic marker”– in this case, a protein– called HLA-B27. This marker is found in over 95% of people in the Caucasian population with AS (the association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups. It is important to note, however, that you do not have to be HLA-B27 positive to have AS. Also, a majority of the people with this marker never contract ankylosing spondylitis. Undifferentiated spondyloarthritis has an onset of the disease which is insidious and, even years of disease inflammation or calcification of the sacroiliac joints (the joints where the spine meets the pelvis) is often absent or mild on routine x-rays. According to some experts, the age of onset is very wide and tends to peak at age 50. Unlike AS, USpA is more common in females and only 20-25% of people with USpA are HLA-B27 positive. Some people with undifferentiated spondyloarthropathy later develop symptoms of the other forms of spondylitis, such as AS, but many will continue to have chronic, but not severe symptoms, and remain “undifferentiated.” []

In juvenile spondyloarthritis, sometimes the symptoms are episodic and unpredictable, seeming to come and go without an obvious cause over a long period of time. This cycle of disease flare up followed by remission may be repeated many times. It is important to note that the disease progression and the severity of symptoms vary in each person. Some children may experience a mild, short-term disease, whereas others experience a severe, long-term and disabling condition. The more common symptoms of juvenile spondyloarthritis include arthritic pain, especially around the heels or toes, around the knee and in the lower back. Frequently, the first symptom is pain at the site where ligaments and tendons attach to the bone (the inflammation at this location is called enthesitis). Months or years later, other joints may be affected, particularly joints of the spine or sacroiliac (SI) joints – the joints at the base of the spine, where the spine meets the pelvis. At the beginning of the disease, children often have inflamed, swollen joints like the knees and ankles, but in adults, the spine is more likely to be involved. This inflammation can cause permanent damage if left untreated.  Sometimes children with spondyloarthritis develop other symptoms as well. These include fever, psoriasis (a chronic skin rash), other rashes, colitis or Crohn’s disease (inflammation of the intestines), and iritis (inflammation involving the eye). Rare complications may affect the heart, kidneys, or spinal cord. It is also important to know the exact cause is unknown, but genetics do play a key role. Much like in adult-onset spondyloarthropathies, the genetic marker, HLA-B27 is often found in those with JSpa. []

About 20% of people who develop Psoriatic Arthritis will eventually have spinal involvement, which is called psoriatic spondylitis. The inflammation in the spine can lead to complete fusion – as in ankylosing spondylitis – or skip areas where, for example, only the lower back and neck are involved. Those with spinal involvement are most likely to test positive for the HLA-B27 genetic marker. The symptoms of psoriasis include scaly red patches appearing anywhere on the body, but often on the scalp, elbows, knees and lower end of the backbone. In psoriatic arthritis, the skin condition is accompanied by arthritis symptoms:  the scaly patches on the skin caused by psoriasis; pain and swelling in the fingers or toes, sometimes the swelling causing a “sausage” appearance; small indentations, lifting and /or discoloration of the fingernails or toenails; pain and swelling in the joints; pain and stiffness of the spine, especially after prolonged inactivity; inflammatory eye conditions of the eye such as iritis or conjunctivitis which can cause redness, pain, blurred vision and sensitivity to light. []

Reactive Arthritis usually develops 2-4 weeks after the infection. A tendency exists for more severe and long-term disease in patients who do test positive for HLA-B27 as well as those who have a family history of the disease. Symptoms include: pain, swelling and stiffness in the joints including the knees, ankles and feet; skin rashes that commonly appear as thickened red or brown spots, scaling rashes on the palms of the hands or soles of the feet, or a red scaling rash on the penis;  involved fingers and toes that often swell, causing the so-called “sausage digits;” fingernails and toenails which may become thickened and crumble as if infected by fungus; fever and chills; inflammation of the eye (conjunctivitis, uveitis or iritis) that can cause redness, pain, sensitivity to light and skewed vision; enthesopathy – inflammation where the tendon attaches to the bone; inflammation and pain in the lower back or pelvic area; cystitis, which is an inflammation of the bladder or urinary tract, causing frequent urination and a burning sensation when urinating; genital sores appearing on the shaft of the penis or scrotum, or in women, on the external areas of the genitals. These are usually blisters that break open and crust over. Although they heal without scarring, these blisters can be a source of great anxiety in those with ReA. []

Ankylosing spondylitis and related diseases tend to run in families, so there is a genetic factor involved as well. Those who test positive for the HLA-B27 genetic marker are much more likely to have spinal involvement with enteropathic arthritis than those who test negative. Ulcerative colitis and Crohn’s disease are the two types of IBD most commonly associated with enteropathic arthritis in spondylitis. Abdominal pain and bloody diarrhea are the most common symptoms of IBD.  Arthritis symptoms may precede the IBD symptoms. About one in five people with enteropathic arthritis will have inflammatory arthritis in one or more peripheral (limb) joints such as an arm or leg, although the lower limbs are more commonly affected. The severity of the peripheral arthritis normally coincides with the severity of the IBD, thus when diarrhea and abdominal pain are flaring, the peripheral arthritis tends to flare as well.  About one in six people with IBD also has spinal inflammation, although this inflammation is independent of the severity of the bowel disease symptoms. In many, this may just be arthritis in the sacroiliac (SI) joints, but in about five percent of people, the entire spine is involved, as it is in AS.[]

When I was writing this, I kept thinking that I should have a site like Google just for symptoms. It would be like an online search tool for symptoms only, but it wold only be for symptoms~kind of like Web MD’s search tool. The part that would be most interesting is that it would come from me since I’ve actually experienced most of the symptoms myself. It would be like asking me personally~have you had this symptom Dana Morningstar? How did it feel? What did the doctors tell you? What did you do about it? Could you give me some advice? It would be so cool?….Someday in the future I hope…