Ankylosing spondylitis wife, mom, and grandmom!

Can't believe that I log in and it's been a month since my last post.  It has really just been a VERY busy time, and to top it off when you don't feel that great--it's hard to just keep up! New Rheumy--I like him, but just not sure how knowledgeable he is on ankylosing spondylitis.  Yep--just because you see a "specialist" doesn't mean they "know" your disease!  I wish so much that I could just stay with Dr. Butler.  She knows AS and and I LOVED her!  Had an MRI done of my sac. joints and no damage thus far.  GREAT news!  But us females with AS know that other joints are more damaged in females before the sac. joints.  I am happy to know that there's no damage there though.  I do sometimes wish that I could have a MRI of my entire body--ha!  What is going on with the neck, knee and shoulder???  Those seem to be the worst--so I'm also going to see an orthopedic doctor next week. Here's the thing folks--it's up to YOU to be yo...

Mommie and Mom--is there a difference? YES!  I think so!  Your little ones start out by calling you mommie, then as they get older it becomes mom.  So, is there a difference--not in the love that a child has for their mom, but it's all in how they say it. I have older children now and there is a difference!  Whether I'm Mom or Mommie and no matter how old they are--THESE beauties will always be my babies! Can you see the text from that teen that starts "Hey Mommie"?  My reply--hey, "what do you want"?  HA! Or how about this one "MOM" (insert a whine here).  Or "mommie, I don't feel good". It's all in the growing up and becoming adults.  We all, at some point, no matter our age want our "mommie" Well, I'm learning each day living with a chronic illness, that sometimes being "mommie" is very hard.  I will NOT let ankylosing spondylitis take the mommie from me!  I love when my girls need "mom...

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 mak...

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 ca...

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. Swolle...

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've 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 f...

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...

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 sudde...

I understand why some people get to the place of hope being lost or having no hope. Each day a person that suffers from a chronic disease has questions of hope; -I hope I can make it today with no pain -I hope I can endure the pain -I hope I can get a good nights rest -I hope that since I'm not sleeping, I won't suffer tomorrow -I hope that I can make the plans with friends -I hope my friends will understand when I cancel -I hope I can clean my house today -I hope nobody stops by because my house hasn't been cleaned in days -I hope I can do the laundry -I hope everyone still has undies since I don't feel like doing laundry -I hope I can make it to the grocery store today -I hope we have something in the house to eat because I just don't feel like moving -I hope they can get my disease under-control -I hope they find a cure -I hope I can walk up those stairs -I hope nobody is behind me, cause I'm going slow -I hope I don...

I think for the most part it's safe to say that we all regret something. I regret that I didn't have that dessert...I regret that I had that dessert! ha! Seriously, we do have "things" in our lives that we regret. Maybe it's about education...you regret that you didn't get a certain degree or that you didn't pursue something while you had the chance. You regret that you didn't take that job when you were offered, etc. You regret that when that door was open, you didn't take the chance and walk through it. Living with ankylosing spondylitis causes one to have regrets about--hmmm--different things. Like regretting that you couldn't go to dinner or just didn't feel like "going out" or doing something as simple as sitting outside with your family. Regrets that you couldn't be the mom or wife that you REALLY want to be. Regrets that you truly can't work anymore-so you feel as if you aren't contributing like you should. You ...

One week ago today my step-father passed away...now let me back up a bit..... About a month ago, my step-father was in a terrible car accident. He had to be life-flighted to Atlanta Medical Center. He had basically crushed his leg from the hip to the knee and his foot (same leg). He had surgery and was in ICU. Two days after I had remicade infusion, so for those that have this---I did not go to the hospital for a week. For those that are wondering why, well, I couldn't chance getting sick because my immune system is low--and especially after a treatment. When you walked in to head to the ICU you had to go through the emergency. My mom and sister wanted me to wear a mask from the very first day I was there. But, ok...then I'd get the stares of does she have TB? Or can I get sick if I'm around her. NO! YOU'RE MAKING ME SICK! Didn't really want to explain so I just risked being there. I did skip the 1st few days after my infusion to be safe. We went through ups and dow...

Everyone at one time feels guilt. Guilt can actually be so bad that it can consume you! Living with a disease such as ankylosing spondylitis I've had feelings of guilt such as feeling as if my family is suffering because I feel bad or can't do certain things. As I sit here and type this, I'm thinking that guilt and sadness for one with a chronic disease almost go hand in hand. I don't think I have feelings of guilt as much as feelings of being sad. Sad that I can't do something. I can separate the two as well...I feel guilty that I wasn't there for my mom when my step-father passed one week ago today. But, that guilt is not because of AS. I was where I needed to be, but at that time, I needed to be 2 people. That's guilt but not A.S related. I feel guilty that I possibly have passed on this terrible disease to my daughter--this is A.S related---and yet at the same time that makes me sad. Gosh--guilt is hard to write on! Maybe it's so hard because it'...

I've been asked to join a group of bloggers who all have our "mystery" disease called ankylosing spondylitis (AS). Why the mystery?? Well, YOU can't see it--but can you??? If you look close enough, I think you can. So, I'm writing on being a patient advocate today. I started my blog because of AS. I do want people to know how it not only effects me, but my entire family. I had NEVER heard of such a disease, but yet there are over 2.4 million with spondylitis. How have we never heard of it? Why have I always thought when I see that stooped over older person they didn't do what their mom told them and stand up straight. Mmmm, maybe they have spondylitis?! What does it mean for me to be an advocate for AS? I feel it's important for me talk about AS (blog about it). To tell those how it's my entire families disease. To educate myself and others. To inform folks that if you truly look--I mean look--it's not invisible. --yes, it's a "form" ...

My husbands company changed insurance companies--now before I go any further, let me first say that I'm thankful for my insurance and that my hubby's work provides!--BUT, for those of you with a chronic, incurable disease--when you hear the words "new insurance" you might as well cuss us out! When hearing we were getting new insurance there was the on-line check of ALL my providers and my families. YAY great news...they are all IN NETWORK. No more worries and I don't even think about it again. Go to my rheumy--sign in--hand new insurance card and get told, I'll have to check this. After sitting there a few minutes someone (a new face to me) says, "you're out of network, we don't accept that insurance". For those of you who like your Dr and who have an incurable disease can understand my reaction--I started crying! YEP, crying! She takes me to her office---and hands me a box of tissues. I've driven an hour to the appointment. I need to be ...

So last blog I informed you of a feeling that has popped in my mind a time or two about how I wish "people" would just understand or at least try. For those that read....pretty much seems we ALL (all us ASers) feel the same. I only had one person that didn't agree--how'd that happen?! Only 1! Wondering what the blog was about...it's still there so just read on! And yes, I still feel the same way. And glad I wrote it. Which leads me to believe that we all need to speak out! We need to say what we're feeling and we need sooo much for "people" to get educated on what ankylosing spondylitis (AS) truly is! And NOT feel sorry for us. I still wish folks would stop with the little comments--but, I do know they are just trying. I also, know that those that ask how I am and those that are praying for me daily--I'm thankful for all of you! So with that the spondylitis.org (plug there) organization asked us to submit videos...those of us with AS know that wo...

I'm warning you now--that this is a blog for those who truly want to "try" and understand about AS or those of you that HAVE AS. Do you ever wonder if it'd be easier to say...I have cancer than AS??? And I don't take that statement lightly. Just over a year ago I lost a dear cousin to cancer. She was my age..married, children. One of the sweetest ladies EVER! But, those of you who have AS...you know where this is coming from!! "People", for what ever reason, understand cancer. Maybe they don't understand it totally, but atleast they accept it and try. With ankylosing spondylitis, "people" just don't care! Let me quickly say, my family DOES care. But, I don't really think "people" care. I also think ok, if "it" were cancer, then I could go through the treatments and be done with it--whatever the outcome. Whoa...you say/think. Yea, I'd be done with it. It would be defeated one of 2 ways--and being a born again ...

So for this Mother's Day I was reminded how fun it is to just be with the family. Can I say that trying to get a family photo with Mom, 4 siblings, couple of spouses, and 4 grands..well...it can be very funny! All of us... When you're a mom, Mother's Day takes on a different meaning as well. You are sooo thankful and blessed. I know I am--I'm thankful for my girls and so proud of them. Our family went to church together and then out for lunch (yes, made that reservation, because us "moms" didn't want to cook or clean). Nanna with her grands.... Me and my siblings...I'm proud to say that I'm the oldest, then my sister, then our not so small younger brother and then the baby (who also has AS-he's beside me). I love them so much and I'm thankful they are "mine". This picture makes me want to cry, but at the same time be thankful. My brother Dan has an incredible story and I think I'll ask him to type it up and send to me! Summary...

April is Ankylosing Spondylitis Awareness month--wow! mouthful! Here we are halfway through April and I've really done nothing. Why? Because I have AS! Simple for me to understand and for those that have the disease. Not so simple for those that don't. I would never wish this terrible disease on anyone, but everyday I think "I wish you could understand". I guess it's not possible for anyone to truly understand unless you're going through it--hence the difference between empathy and sympathy. Tomorrow I go for "round 3" of my Remicade infusion--am I excited? um actually, I wish it were now! I've not had any relief so far and I'm hoping the "3rd time is the charm". I'm also hoping for no complications when I whip out a new insurance card-yes, TOTALLY NEW INSURANCE! This literally is a nightmare for someone with my type illness. So for now, I live with AS. Here's my AS awareness---What I'd like for YOU to know-- Every morni...

When one has AS, "life" plans quickly change! I say "life" because it's everything you do...it's simply "doing life" that changes! Everyday you select the type clothing for the days activities or events..when one has AS, we select clothing on how much pain our body is in that day. Do you dread certain days/things...with AS, I dread methotrexate! I sometimes put it off a day just because I hate it so. I know I shouldn't but I do. :( Do you "think" about what will hurt when you're intimate with your spouse? Yea, with AS the pain NEVER stops...so "it's" always on your mind no matter what you're doing or where you are. Do you ever think, I need to move because of a disease??? My home is beautiful. We love it, but..here's the but, it's 3 levels! Stairs to even come in to my home, so I've often stood at the bottom of the deck looking up and thinking--how am I going to get in the house? Have you ever wondere...

Thought I'd bring the "old" lap top and blog while I sit here these 2 1/2 hours getting this 2nd remicade infusion! When I say old, I do mean I probably have the biggest lap top in here and thinking that if I'm going to need monthly infusions I need an ipad! Wonder if insurance would cover it? bahaaaaaaaaaaa Speaking of insurance, we are getting a new policy come April 1! Soooo worried about that one! I already have to fight to get NEEDED care! FYI--you-YOU--are your best advocate! Fight for what's yours!! Now, back to this infusion I will probably have a huge bruise on my hand-NOT because of the IV, but because of the 15 min of thumping to find a vein, which she couldn't! So, it's in the bend of my arm..can you say OUCH! Haven't felt any relief from the first infusion but sooo hoping that I will after this one! So getting an IV in the bend of your arm makes for hard typing! Doing the 1 finger bit right now! So this blog will need to be shor...

First remicade infusion was last Thursday. Saying I was all ready, would be a lie. I was nervous about the first time for this new medication. While you read or talk with folks about side effects they may have had all meds are different for all people! I was so thankful that Lang was going with me. We get there and I'm about to head in when we get told, Lang can't come back with me-wth! So, I've got to do this alone and he's got to sit in the waiting area for 2 1/2 hours---really???!!! So, once back in the room, the nurse proceeds to tell me the reason that Lang is not allowed to come in is because she is discussing "health" records/procedures and it's confidential. OK--well, there's 3 of us in the room getting procedures--me and 2 men who have gastro diseases and are on remicade--so I can hear, but not my husband?! That's really kind of stupid! The procedure went well--no side effects other than being extremely tired. It took 2 1/2 hours a...

I can't believe it's been a month since my last post?! I have been a "bit" busy and a LOT in pain. Since I last wrote, I mentioned that my rheumy informed me that I have an aggressive form of AS (again still not the words I want to hear-I wish she'd take them back). Currently, I'm not on anything but methotrexate (and folic acid, b-12, vitamin d-blah-blah). I've already been through humira and enbrel but they didn't do what doc thought needed to be done, so Thursday I go to the remicade IV infusion. While I am looking forward to hopefully having a medication that works, I'm a bit "leary" as to how it will make me feel and how it will affect my body. But, let's just say the pain that I'm experiencing is "out the wazoo" right now! For winter break me and my sis took our kids to Disney. Have any of you been? Have you been with AS???? WOW! So, you still have to take all your meds with you (had a suitcase just for th...

I haven't exactly been doing to good with this ankylosing spondylitis (AS)! I've been cutting back in all areas of "life" trying to get this disease under control. Even my Rheumy says, "usually my patients get better, not worse". WHAT?! UGH! oh, and that's not the 2 words you don't want your doctor to say because if it were my count wouldn't be correct! So...the 2 words are---aggressive form Rheumy tells me last week that I have an aggressive form of AS. Not really want I wanted to hear. I've been on humira and enbrel which I'm not responding too. So, we're going to remicade IV. That's not a roman numeral! I will take an I.V form of medication now. I am still on methotrexate and will continue it. The pain has been out the "waazoo" lately and I'm praying that this change will be just "what the doctor ordered"?! I'm also praying that insurance will be cooperative and that my cost will not be...

Reading on the ankylosing spondylitis awareness page....they ask a question- What do those of us who have chronic pain-live with chronic pain- wish that those of you that don't knew. If we wrote a letter what would we say---reading so many of the comments and wanting to "like" them all, I decided to just steal them! Copy them here for you to read. It's exactly how I feel. It's exactly what I'd say! They need to be shared! It's not easy for those of us with chronic pain. It's not easy living with AS! So take the time to read... -Enjoy being able to do whatever you want without thinking of the consequences -Sometimes the pain is so bad, I'd rather die than face it another minute -Sometimes it causes me to scream and cry or bring a grimace to my face -Don't forget to thank God for the ability to eat without throwing up or walk without a shuffle or limp -"Sucking it up" is not always an option-sometimes nothing helps -Don't tel...

Thinking of the past year and the "new" things/challenges that occurred and what this year will bring! -past-A child that graduated high school and started college! Who I might add, is doing fantastic! -current-a child that will turn 16 and start driving/being more independent than she already is if that is even possible! -past-the death of my dear cousin Sandi who lost the battle to cancer and was so young -current-Sandi's daughter having a child Gosh so many things throughout the past year that I could list and thinking of "things" that are already in the planning stages for this year...like--current-2 brothers getting married! YAY! It's been a great Christmas with family and friends. Time to focus on what's ahead! I was asked by one of my siblings if blogging helped me. No, it's not for me. I'm hoping that it'll help more of you understand what AS is. Hoping that my family and friends will somewhat understand why the simple things ar...