Archive for the The Blogs By Meloni Category

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.

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Self Esteem And Fear — Are They Related? By Meloni

Posted in The Blogs By Meloni, Week 12: Self Esteem, Week 13: Fears on September 26, 2011 by Cookie Has A.S.

Self esteem and fear–are they related?

When given a topic of self-esteem nothing “bloggy” comes to mind. I’m not an arrogant person, just that I do not struggle with a “low” self esteem. I can think back to my childhood and all the bullying that I endured, but even that didn’t stop me from reaching for things I wanted. And trust me I was certainly one that was bullied a LOT!
So, having a chronic, life-changing, VERY painful disease doesn’t” bully” me enough either to have a lower self esteem. It just makes me want to “reach” for things that are harder. Not really setting myself up for failure but learning the limitations and/or setting new ones, but still LIVING TO THE FULLEST! The fullest that a life with AS can be.I think that’s where fear comes in. Are you afraid to try? Are you afraid to reach for those things that seem so far away? I think a lower self esteem causes fear! So, for me I do think they can be related to each other.

Now, there are things that make me go hmmm, but I’m not afraid of them. What does my future with AS hold? Will I be all fused and hump back–makes me sit up straight as I’m typing :)!!! Will I be able to throw my grandchildren up in the air and run and play with them (as long as their young-ha). Will my medicine work and do I have to be on it forever? But, I truly think that if you dwell on all the “what-ifs” in life then FEAR will consume you. I think we all-healthy or not-should live today as if it were your last. Cause really there aren’t ANY of us guaranteed LIFE, we are guaranteed ETERNAL LIFE through Jesus Christ, but LIFE? NAH-we are not.

So–put others first–think positive thoughts–don’t let fear and low self esteem stop you from LIVING!

Reach for those Dreams–even if it’s walking to the mailbox today! Or calling a friend and saying I love you!!

CHOOSE JOY!–yes, I truly believe it’s a choice.

Just like when a kid say “I’m bored”–makes me shake my head–that’s because they’re choosing to be!
CHOOSE JOY and CHOOSE LIFE!

AS has my body, but NOT me!   I don’t choose AS!!!

Need Or Want By Meloni

Posted in The Blogs By Meloni, Week 11: Need on September 19, 2011 by Cookie Has A.S.

We often say we “need” something when really it’s just that we “want” something. It’s really not a necessity just a want! Having ankylosing spondylitis there are some things I “need”. I need my medication. I need my rest. I need my husband to help me out at times. I need my rheumatologist. I need my comfy cloths that don’t hurt. These are just some of the basic AS needs.

But, there are other “needs” associated with my AS as well and those have to do with others. I need folks to just try and understand. I need to cancel sometimes. I need you to walk slower. I need for you to NOT tell me that “oh, exercise is good for arthritis”. Really…well, I don’t have “arthritis”. I have ankylosing spondylitis. I need you to not zone out after YOU ask a question about AS or how I’m feeling.

Truth is…there’s a HUGE difference between wants and needs. So, what are your wants? I want new shoes, new clothes, a new car, more money. Those are all things that all of us could say we want. But, what are your needs? Seek the difference between the two. For to often we really are just “wanting”. When you live with a chronic illness, the wanting and needs change. Seems the wanting starts getting less. I strive now not for wants, but things that I need–and things I’d love to have back.

Now, wait-before you think oh, now we’re going to the “wants” of the past. Oh, I wish it were like it was-talking economy here-no, that’s not what I’m talking about at all, while I’d love nothing more to be back economically at that place again. This is a look at my body back several years ago–not a look and say, “oh, I wish I was a size 2 again”. That’s just outside and vain. It’s not about how you look. I want to be able to go bowling. I want to be able to dance with my husband without pain. I want to be able to walk with the dog again. I want to wake and feel no pain. I WANT MY LIFE BACK. See the difference between the want here?? I hope so!

We take things for granted! We take our LIFE for granted. We are given this precious gift-life. But, how do we use it. Do we use it to just make ourselves look better on the outside–that’s just all a joke! What’s behind your closed doors–yelling and screaming or love and compassion. Sometimes I think we’d quickly chose to wash a strangers feet than wash the feet of those living in our own house! If your “house” isn’t right–then you will not last a chronic illness. I’m thankful my husband loves me through sickness and health…seems there’s more sickness now. Why does he have to live this way? I DON’T WANT THIS!

So, taking this from a blog I recently was introduced to–one where “Sara” is losing her fight with AS. Her body started shutting down and hospice was called in last week–all from complications from having AS. There’s not been a new post, so I wonder if the fight is over and she’s home resting with her Father–OUR Father.

“This is not the life I imagined for myself, but it’s the life I’ve been blessed with and I won’t take a moment of it for granted.”

So, I might not dance or bowl, but I will NOT live my life with regrets either. I’ll suck it up and dance a little ;)!

And another stolen line that I’ll be adding…
“My body is brutal, but I’m ok”! I am ok. So, that’s what you’ll hear from me! I have been sooo blessed and I will NOT take one moment for granted!

AS has my body, but NOT me!

Ankylosing Spondyilits Symptoms I Have A Few By Meloni

Posted in The Blogs By Meloni, Week 10: Symptoms on September 12, 2011 by Cookie Has A.S.

Anytime you go to the doctor they ask you your symptoms (of whatever you maybe going for). Most of the time, this is a pretty simple question-I mean if you’re running a fever, throat hurts, coughing, head-ache–they could say sinus infection or strep. If your blood work shows something, they can give you a diagnoses.

Well, here’s the thing, when you have ankylosing spondylitis–NOBODY REALLY KNOWS THE EXACT SYMPTOMS! ARGGGGG!

I really have been thinking of this–my symptoms. Can I think back of when I truly think AS started for me. Could it have been at the age of 15? That was my first knee surgery–for arthritis! Could it have been the bad headaches as a child–um–yes, this is a symptom. Was it the 2nd knee surgery? Was it the shoulder surgery? When did the AS “really” start for me? I know when I got to the “advanced stage” was around 5 years ago. The symptoms at that time were ankles that were so swollen and hurting so bad that I could hardly walk. Swollen fingers and wrists that I could hardly dress! Then the lower back–OUCH! That’s when I got the diagnoses of ankylosing spondylitis (AS). And then started on all kinds of medications!

So, several years later what are my symptoms–oh, the same, but add with that severe hip pain, neck pain, and now eye-pain. EVERY PART OF MY BODY! BUT WAIT, let’s not forget the “symptoms” and “risk” from all the medication I’m on. Let’s see liver failure, kidney failure, heart failure, headaches, nausea oh, I could go on and on!

I really just try and NOT think about “symptoms” anymore. Seems there’s always something new and it’s always different! For the most part my constant these days are ankles, wrists, back, neck, eye and hip. Yep, too many so that’s why you can’t “think” about it. Can’t dwell on negative or AS will consume you! I’ve always been one to believe that no matter what it is, you MUST stay positive. My saying has always been, “It is what it is”. I will NOT let the pain/disease take over. If you’re going to live that way, then what’s the point of living. Sure, I have myself a little pity party every now and then, but then I quickly remind myself, there are so many people in this world who are way worse than me!

AS has my body, but NOT me!

Sleep, Friendships, Social Gatherings And A.S. By Meloni

Posted in The Blogs By Meloni, Week 07: Sleep, Week 08: Friendships, Week 09: Social Outings on September 5, 2011 by Cookie Has A.S.

So, I’m literally cheating right now.

I’m part of an ankylosing spondylitis blog group

and I’m several blogs behind

and yep-I’m combining them to catch up!

Because I literally been in a BLOG FOG!

So the first item is sleep-which I now think should’ve been a 4-letter word! Those of us who are in pain 24-7 don’t really “sleep”. Have you ever woke from your sound sleep because you’re hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT’S CLOSED! So, sleep is not something we “really” do. We try and rest every now and then, and even that’s hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we’re sometimes a bit short and snappy. But, folks don’t realize that. They just think we’re rude or something. You try going without sleep for days, weeks, months, YEARS!

Friendships–sometimes it’s just best to not have them. They don’t really understand. So, my “close” friends are few. I have those few (very few) that I can call on the way home from the doctor and cry or share how I’m feeling and they listen. They do try to understand, but I know you can’t understand “things” that you haven’t gone through yourself. I am thankful for those “few” that I have and love them dearly! DW and T–I love ya’ll sooo! As for “couple friends”–you know the married couples that you and your spouse do “stuff” with. Hmm…we have a few of those, I wouldn’t say close though—but my outings are few.

Which leads right to, social outings! We LOVE doing things and going out. But, my time is short. I can’t do what I could before AS. I’m finding “outings” have to now be timed around my infusion. Like the week or two after that I can actually function–not a normal functioning–but function. Because if something comes up when I’m in week 4…forget it! All I’m thinking about is how much I need that infusion and could it hurry and get here. So, for the most part, my outings will be focused on what my kids are doing. I have to pick and chose what I do and know that some of the things I do chose are going to put me down for a day! Oh, and that’s not sleeping, it’s a day of rest. I call them time-outs!

So, here’s the deal with sleep, friendships and social outings–are you going to be all upset when I cancel because of how bad I’m doing at that hour before something is planned? Then it’s not worth you being my friend, because it’s going to happen. Just recently my sister wanted to take me to lunch for my birthday–I called her 30 min before we were supposed to meet to let her know, I’m not feeling good and can we do it another day?….she understands-would you? Most don’t understand. They all the sudden get the “oh, she always cancels attitude” and then they stop inviting. We’ll that’s not what a “true” friend does. A “true” friend tries to gather all the knowledge they can on ankylosing spondylitis so they can understand a little of what I go through.

Do you know someone with a chronic disease? What have you done for them? Do you even try? Have you ever said- hey “you’re feeling bad today?, we’ll how about I bring over some dinner”. Maybe clean their house. Or pick up their children? Send a card letting them know you’re thinking of them. Or simply, I’ll be praying for you and I’m sorry. Most acquaintances simply stop “acquainting”. They can’t understand nor do they want to try, so it’s just best to not be “friends”.

I’ve learned a LOT about how I should’ve acted all through my life–because I’ve always known people with chronic illnesses. We are all just so busy with our own lives, it’s hard to really stop and all the sudden walk very slowly beside someone with a “disease”. There are only a few people who will slow down for a disease ridden friend. If you’ve read this far, maybe you are that person–I’m not saying come clean my house or bring me some food–hahaha But, you know others–people who are in need. Can you help them today? Is there one little thing that you could slow down and do for them today?

AS has my body, but NOT me!

Weathering My Storm By Meloni

Posted in The Blogs By Meloni, Week 06: Weathering The Storm on August 15, 2011 by Cookie Has A.S.

Hurricanes, earthquakes— well, not exactly it’s called ankylosing spondylitis! That’s my storm I’m living in and through. While storms generally come and go they sometimes leave a “mess” that can be cleaned, my storm has made landfall and keeps churning! If only it would pass and let me clean up the mess. I’m worried that the mess it’s continually spawning on my body will leave severe long term damage for my future. Those of us who have ankylosing spondylitis only wish there were planes flying in to evaluate this disease—knowledge and research is sooo needed. Even finding doctors who “truly” know AS can be hard! There aren’t many medications for those to weather this storm! We don’t want to “mask” it! We want to defeat it! We can’t even prepare for this storm that’s causing havoc on our bodies. There’s no evacuation and boarding up…it’s every minute of EVERY day that we stand in 200 mph winds holding on to not be swept away. Storms are terrible to go through…but you can see the light at the end of the tunnel…the sun shine will break through the clouds, the skies will clear and the clean-up can begin, even if it’s a painful clean-up, it can begin and there is an end. Not true for those of us who suffer from a chronic disease…there is NO end. There is NO break in the clouds and there is NO clean-up. There is only minute by minute struggles. Sometimes it’s hard to deal with a never ending storm. Sometimes the disease can start to take over, but it’s times like that we must remember that it’s our body. It’s our life. The disease does NOT own us…we own the disease! I encourage you to take control. STAND TALL and FIGHT! AS has my body, but it will NOT have me!

Significant Other By Meloni

Posted in The Blogs By Meloni, Week 05: Significant Other on August 8, 2011 by Cookie Has A.S.

I think this entry is probably the easiest to write! What would I do without my significant other..Lang! I think of how hard the past 4 years have been as I’ve been diagnosed with a horrible disease. Something that I never would wish on my worst enemy…yet, something that not only affects me, it also effects my family and my husband!

He tries to understand what I’m going through and I in return try and understand what he is going through. You may be saying right now, but he doesn’t have ankylosing spondylitis….and I just stop and think…obviously neither do you or your significant other because that wouldn’t be your thought!

Chronic diseases effect everyone they are around! For those living with a chronic disease you know how important it is to have support. That person who will let you just lay there and do nothing because that’s all you can do! That person who stays positive for you and yet lets you be all grumpy if need be. That person who all the sudden must take on your roles, because you are unable.

For those that have a chronic disease and you don’t have that significant other, then find those of us who can share with you through your struggles. One you can talk with and cry with.

While I wish that AS had NEVER entered my body, I sooo wish that it had NEVER entered my marriage. Even though it has, it’s great to have someone who loves you soo that even in sickness they are standing right beside you. It’s not just my fight, it’s my families fight. We’re a team and nothing can come between us–not even AS!

AS may have my body, but not me!