Ankylosing spondylitis wife, mom, and grandmom!

Christmas holiday fun has taken on a new challenge for me. I guess I've had AS my entire life, but the "switch" wasn't turned on until a couple of years ago. With that, I've only been diagnosed with AS for 1 year now. SO...the simple and fun things that you just "do" during those Christmas holidays are taking on a new meaning for me! Seems this year has been a bit hard. Hard to hold out! I want to do those same things I've always done and more! My body is sometimes yelling...SCREAMING at me to stop! But, my mind and my heart are screaming back..NO! So, for now..I'm going to be in pain cause it's certainly worth it! Lake Lanier girls trip to see the lights and BTW Callaway Gardens lights are waaay better! But, they don't have a fair so it was a great trade off! Santa asks the girls, "do you know who's birthday it is?" My girls, "Jesus". Santa, "that's a great thing to know"! Yes it is Santa and nev...

Living with ankylosing spondylitis (AS)can sometimes be very hard. Take today for example..couldn't open the turkey to make my sandwich, so my 15 year old did it for me. I am thankful that I can Christmas shop right here on-line! No, walking and carrying packages! Just a bit of rambling today. It's raining...everything hurts, but I am blessed. Blessed to have my family! Both of my girls are so amazing and smart! Both made B's or better on their grades for the 1st semester (college and high school). Blessed to have such an awesome husband! Really need to take a methotrexate shot..haven't in 2 weeks, but I truly do NOT want to feel so nauseous. Took my enbrel injection and realized that the reaction I have to it is pretty bad itself. This medicine that we MUST have really does kick your butt! Wishing everyone a pain free (or at most manageable) day!

For those with AS I'm sure that title made you think I've gone crazy! What positive could you ever find in having ankylosing spondylitis (AS)? At the rate I'm going on the stomach viruses and methotrexate weekly nausea, I'll be back in my skinny jeans in no time! Joking aside...my husband has declared me the "upchuck champion". Not an award that I will display or even want to accept! The beginning of the week I felt as if my head was going to explode! Then it hit...here we go...the "upchucking" starts! Life with AS means taking drugs that 1. compromise your immune system 2. make you nauseous Which means-you are an easy target to catch EVERY stinking thing! Can I get a break for the nausea and throwing up please! So for today--which is supposed to be my "sick" day! Medicine day...I will skip for now. When you basically haven't eaten in a week, best not to continue that path. So methotrexate you will be postponed until I see fit to "...

Went to the rheumy Friday and she's still not happy about how I'm doing. Actually, I'm not either! Just thinking that 3 years ago...I WAS FINE! Now, I'm fighting pain, nausea, hair falling out, joint swelling, tired, headaches and the newest a freaking I twitch for a month! Yes, my eye has been twitching for almost a month now. Oh, you can see it..it's not just a little one. The entire lid is twitching. Wondering if anyone else has ever had a month long eye-twitch??? Is this just another something that I'll suffer through? Could it be something in my neck that is causing this? I've heard this one several times already-you know that's sometimes caused by stress. Can a person with A.S not have stress??!!! Could my neck, which has really been bothering my lately, be messing with a nerve that is causing it? I don't know, but this eye twitch, wakes me in middle of the night---WHILE I'M SLEEPING!!! My eye twitches while I'm even a sleep! Craziest t...

The bro-in-law asked me how I was feeling today. I said, tired..like crap! Just my Thursday! He says, "you know what's good about Thursday"...ok, in my mind, I'm thinking are you really asking me if there is something good about the WORST day of my week...the day I get to fully experience the joy of methotrexate??!! So, I say, THE END--cause you know I'm thinking the end of the day...he says, nope! Friday is next! Gotta hand it to him, he's right! I'm so thankful tomorrow is Friday! Since Thanksgiving ALWAYS falls on Thursday and so does methotrexate, I decided that I'd skip the feeling of nausia and enjoy me some turkey and dressing! I really had to think long and hard if I wanted to inject that dreaded feeling today...knowing that I did feel very tired last week, but not the nausia was really on my mind today and I truly HATE this feeling!-yes, that means I took my meds! So---now, I'm fighting the feeling of tired, and nausia as I smell ...

The family at ZETA parents weekend-Saturday morning brunch before the game! After a great ZETA parents weekend filled with LOTS of activities one with AS might think that the week following is going to be pretty bad--that's what I thought! I've actually been blessed with a wonderful week. Now, granted my Thursdays are always spent resting from my methotrexate "hang-over"...sometimes worse than others...other than that, I've felt pretty good after a FULL weekend! Will I ever see a "pain-free" day again...not really sure about that. I do believe that God is in control and HE can make that possible--BUT, the joy is knowing that one day...I will be pain free! While it may be in heaven, I can rest knowing that God WILL take my earthly pain away when I see him face to face! What a glorious day that will be! God blesses me with "times" that I can say..hey, I don't feel the pain and those times are when I am worshiping him! So, maybe that's th...

This is a very busy weekend for me. AS is not going to stop me from doing something very important....it's parents weekend for my daughters sorority! You may think, ok, well it's parents weekend--GO. Anyone with AS just thought..yea, wish it were that easy! Friday night will consist of a dress-up fun night! Dinner and Casino night! YAY! That sounds so fun! Well, yes it most certainly does. Took forEVER to find an out-fit. First because anyone with AS knows that shopping/trying on clothes...not an easy task as a female in-general but throw in a CRIPPLING disease!!!! Thankful I started weeks ago for that part! It's just not enjoyable to even get a new outfit when it's so painful and then you also have to see the size you have to get because of the medicines you have to take! I will be looking nice...as long as you don't look at the shoes! It's the freakin shoes! Not sure if everyone with AS has this problem, but my feet HURT! My ankles are HUGE! Anyt...

So I'm literally recovering from one of the worst weeks I've had...let me start at the beginning, well, actually I'm not even going to start at the "very beginning" because that's really not what I want to post on a blog. I'm not one of those folks who wants the entire world all "up in my business"! But, I do want the entire world all up in ANKYLOSING SPONDYLITIS (AS). So, skipping to Tuesday which I didn't feel good at all, thinking it was just stress from Monday and not sleeping Sunday or Monday night, and I had a little upset tummy. The bathroom did call me several times. But, again, I'm thinking what did I eat, dang stress..you know! Fell asleep sitting up, which again for ASer's is not too bad if you are all propped with pillows in the "right" places, blanket covering me and my dog snuggled up! Let me note the time here..it's 5:30! A bit early, but again as all ASer's know...this happens! Wake Wednesday wi...

Rheumy visit last Friday went well--as well as can go when you're literally struggling with the level of pain and the meds not quite working. I was on humira and went off all for a month and then changed to enbrel. I've been on enbrel for 1 month (and 1 week) and the doc says it will take 3 to 4 months for it to "kick in". Well, can you hurry up, cause AS is kicking my "AS"! So, I'm having more of the "bad" days right now, but such as life with AS. Just have to get through these next couple of months praying the enbrel with "kick in". We've added flexiril....I'm sooo over adding more pills/drugs! But, it's finding the right combination that will work for the pain and manage the disease. So I guess--"this is life"! I've come to really dread Thursdays....why?....well, it's the day that I have "selected" to be my "sick" day! Some Thursdays are good and some bad, just depends on the i...

I've been asked to share/tell my story so I thought I'd just share again on my blog as well for those of you who've just started reading. I'm a mother of 2 beautiful daughters And I have a WONDERFUL husband and BF of 20+ years. Ankylosing spondylitis (AS) was not what I wanted to join my family. About 3/4 years ago I started having terrible pain in my lower back and my hands and feet were so swollen and hurt so much. I went to my PCP and she did TONS of blood work trying to find out the cause of all the swelling and pain. I was checked for everything from lupus to rocky mountain spotted fever! I was referred to a rheumatologist (rheumy) who did an exam, looked over my PCP's records/tests/x-rays and he came to the conclusion that I had fibromyalgia . He started me on "drugs" and I had very negative reactions to every drug he would try and the pain and swelling was only getting worse. All the while my husband is saying you don't have fibro . You need...

Everyone talks about getting "flares". I don't know that I get flares....do I? I do know that I pay dearly for what I do! It's more like a "side-effect" for LIFE! I'm not going to stop...I REFUSE! Yes, I'm YELLING! It frustrates me to no end to know that it KILLS ME to walk to the football stadium on game day--and sitting on bleachers...who invented those??!!! It KILLS ME to teach on Tuesday! It KILLS ME to work a full day on Wednesday. It KILLS ME to lead in worship on Sunday and then work with my teens that afternoon. BUT I will NOT give in and stop! So, do I have flares?? Who knows...I hurt all the time..sometimes worse than others and I just think of what I did and then say..oh, right--paying for yesterday. My beauties game day!!! Methotrexate seems to be kicking my butt right now! Thinning hair and nausea is the bad. So, if you see me on Thursday...that's my choice of being that ...

Actually saying you hate something is a big deal in my home. You NEVER say you hate someone, but today, I really just HATE AS! So as you saw in an earlier post (if you follow and keep up) I went off humira to see if it was working...well, it was certainly doing something. I had gotten worse! What to do..go back on it? No, we're going to try Enbrel. Let me first say...having been on the shot and the injectable pen of humira--that is one more painful medicine going in and a few min. after. Enbrel...hurts, but not nearly as bad as the humira did. Yea! Something positive. Now.. hoping that it will actually work! Thinking I'll go and get a pretty pill box because I feel like an 80 year old woman with the pills I now have to take (no offense if you're 80). Here's the regimen.. 1x weekly enbrel injection 1x weekly methotrexate injection 1x weekly B-12 injection (I was defieciant here) and yes, I give those to myself 1x weekly Vitamin D (because YEP I was soo defieciant...

Trying to adjust the methotrexate to be taken on Wednesday evenings...I really hate taking it, but I wanted to change from Friday to Wednesday. Thinking that I'd like to be over the sometime symtoms on the weekend...hoping that if I'm going to have nausia it will happen Thursday. Yes, I'm trying to PLAN for nausia and feeling like crap-the dreaded methotrexate hangover. What day would be best for me during the week. It's a shame that one must plan for this...but it is football season and I'd like to feel like cheering for my team on Saturday than to be in a state of methotrexate hungover! Been off humira for almost a month now and I'm thinking that maybe I do need it. This mornings thunderstorm wake at 4ish made me realize that my pain is getting worse. Couldn't hardly walk the back and ankles were so bad. Monthly rheumy visit on Monday...should be interesting visit. To humira or not! So just in case this is your first read or you still don't rea...

I know I'm not the best of blogging...between this posts and the last seems like a while, but it's been a very busy time for our house! And I don't think I could actually post this until now.... Sent our first born to college. You dread this day, but yet look forward to it..you're sad, but happy. The emotions that I felt, well, I couldn't even understand or comprehend. If one more person told me that this was what I wanted, that I still had my youngest at home..blah, blah, blah...I was thinking at any moment I "may go postal" on someone! The pain I was in-thank you A.S) on "college move in day" would NOT take away this experience from me. So, yep..I lofted beds, I carried boxes, I hung photos and zip-tied curtain rods! The room that my daughter would call home for the next year...would be HOME. Leaving that evening was going to be happy..make her feel loved, but no tears (not in front of her). Well, our youngest changed all of that! Insert the ug...

Monthly rhuemy visit was good. Didn't have to wait to long..let me say that I CAN'T STAND WAITING FOR HOURS...I do want good care and for her to take her time with me, but if you're that type doctor (which all should be) then plain ahead! She informs me that I'm the harder to treat AS patient. I'm not the mild case and I'm not the advanced case..the middle road case. The one that shows some things in the blood work, but not all..that shows little signs of inflamation but everything is HUGE/SWOLLEN... Been on humira for almost a year why is it not working better. Is it the best drug for me? Do I need it? On methotrexate as well. Same questions... Let's figure out how to get your swelling down and the pain better. Sounds GREAT to me!!!!!!!!!!!! We're going to stop humira for a month--see if it's really doing anything. Ok, so let's see either I'll have no change or I'll get worse. Um excuse me..worse? Really? Why wouldn't I want to be in...

I'm trying to stay good about keeping updates on the good ole blog, but at times you just forget...or just don't really feel like much of anything. Vacation was wonderful! We had an amazing time at our friends beach house with basically no connections to the "outside" world as our phones pretty much had no service. It was actually AWESOME! I actually read on someone else's blog that you should always have pictures..but I haven't even loaded them to the computer yet...sad I know! I will load and post soon. One week ago today we were riding home from a wonderful family time. However this particular week has been horrible for me! The first few days home were spent waking in the middle of the night with the most horrible middle back pain. The past 5 mornings have been spent waking with the worst headache. No, it's not gone.....still a small reminder that it's there. I'm wondering why? Why am I waking with a headache everyday. Is it that my neck is fusi...

So, spending time at the beach with the family this week. I was really hoping that the beautiful beach would help with this awful pain but being hit in the back with a full beach bag and the man not even realizing he did it, has NOT helped! I love being able to see the ocean/beach while I type this, but really hate the fact that I can't just ride the banana boat with my girls! I'd love to be able to do this just one more time. Maybe had I realized that I was going to have this dreadful disease I would have done a LOT of things like that! I'm thinking that you should never say NEXT TIME!! Will there be a next time? Reminds me of the movie "Remember Me"...she orders dessert first. Why? he says..she says, well, that's my favorite part and can you 100% guarentee that nothing will happen and I'll still be here for dessert? Can any of us..guarentee that we'll be here tomorrow? NO...I can guarentee that I'll be in heaven and I'm thankful that I ...

So, on Wednesday I head to the NEW rheumy. Why change when you're fine with the one you have...she's not taking insurance any more. You can file your own. Look I have enough problems with fighting the insurance with my medication refills, I don't want to fool with filling my own claims..not to say the cost of paying YOU for the visit. Certainly can't do that! That's why I HAVE INSURANCE so that I just PAY THE CO-PAY! Thank you Obama for all these CRAZY health care changes YOU ARE PUTTING ON US! Obviously his family will be taken care of for the rest of their lives so no need to TRULY worry about this. But, what about us NORMAL folks! So, this is my blog and I can get on my soap box over this one. If you don't like it..well, one of two things..don't read it and you obviously don't have a disease that will be with you your ENTIRE LIFE or you'd know that all the insurance changes ARE NOT GOOD! Changing the subject now to say that my production of "...

I guess it's time to update this "ole blog". Sitting here "resting" today. Yes, resting! I need to remind myself of this before I get to "this place"...back pain is so bad today. I'm fighting the need to slow down a bit when I hate to slow down. My mother would be happy though if I did and knowing that--mom I'm resting today... for a little while anyway! The month of May and so far June have actually been killers! Hillsong conference (which was amazing), Graduation, VBS and directing the musical "13" (which I have one more week to go on this one) have lead me to the realization that I HATE A.S.! Hate the shots...hate the PAIN! So, the methotrexate nausia hits every now and again. The gobs of hair in my hands after washing my hair has started (not that it'll hurt for me to loose some of this headfull). Wondering, for those of you who have AS and are on metho. did it change the texture of your hair as well. Or could it be ...

I really can't stand those folks who seem to complain about every LITTLE thing! I have even been heard telling teens (mine included) you're a bunch of spoiled brats. We have so much to be thankful for everyday. So, why not spend a week starting the day saying something you're thankful for! Just one thing-- if it's hard..start slowly. -I'm thankful for my husband-who provides for me. Who tries his best to make it easy for me and who I love very much. -I'm thankful for my girls-who are doing their best in reaching their goals. Who have goals for their lives and aren't just lazy. -I'm thankful for my family and friends! What are you thankful for...think...right now! We have so much, that we sometimes forget how blessed we are even when you live in chronic pain. Don't let the pain take away the thoughts of all the good in our/your lives! So, I have this chronic disease one that I must live with my ENTIRE LIFE! One that's NOT CURABLE! My complaints ri...

So it's an exciting time for our family as our oldest is graduating high school. I'm so proud of her success in high school--graduating with honors! The grad party was very successful and fun, but also very tiring! This week is one filled with emotions--sad she's graduating, happy she's graduating with honors, sad she'll be leaving for college, happy she's going to college--all of which will be even more emotional the day we leave her at college--but anyway, just an emotional time. How does time go by so quickly. When did I blink and my baby turned 18 and is graduating from high school. Seems just unreal! As for me physically...wow...the worst I've been feeling in a while, but also I've been very busy and still have the remainder of the week to get through. I did up my methotrexate and seemed to tolerate it very good so all is good there. I am having a bit more hair loss than usual. Didn't really expect that, but when you have enough hair for...

So I've been really bad and not posted in a while! It has literally been crazy for me!!! Doctors visits and re-doing blood-work every couple of days because THEY did something wrong...to still not having the answers to the tests..is my liver function normal??? My last visit to the Dr not good at all so the spine is doing what any AS patient knows it will do. I've got discs that are getting worse..blah, blah, blah. Great news I may be upping the methotrexate . Yes, that was sarcasm . I've heard of some having a bit of hair loss...I've got so much hair that a little loss is needed! BUT...it's the dang curl right now. So, I DO have natural curly hair, but this is ridiculous!!!!! The doctor also suggested a bit of bed rest for me to ease the pain---I mean really did you just say I needed bed-rest? Do you realize that I do NOT have time for that right now. I do have fantastic news though--my youngest was complaining of lower back pain and we had her tested yep- HLA -B27...

I love Friday! The weekend is here...no school, sleeping in on Saturday, (not really because we're always so busy), Worship on Sunday..but just it's--- Friday! YEA! What I don't love, is it being methotrexate day. Wonder what the long term effects of being on chemo every Friday will be. Yes, I get 3 shots..the methotrexate and b-12 are every Friday. Holding off on B-12 today, because I've got to go to pharmacy (Publix) and get more "needles"! The metho. shot is a bit smaller than the B-12. Tried using the same size and it won't hold all the B-12. Don't know why I dread the Friday shot. Humira comes every 10 days and it varies as to what day...got it Tuesday and have the bruise to prove it! I guess, it's the differences in the medication. Humira hurts sooo bad going in (I'm talking soooo bad) and is soar a bit after. Usually leaves a bruise, but that's it. Methotrexate..doesn't hurt going in, but about 30 secs after..DANG! Leaves a littl...

Thinking that I am learning a lot about pain. What pain does to you mentally. The physical aspect we all know--it HURTS! But, what about the mental part of always being in pain.... The one thing that I am learning is that you can't give in to pain. I'm thinking pain-- is Satan--can't give in to satan. He's always there...tempting us to act and think like him. Well, pain is like that...tempting us to give in. Maybe it's through pain pills or alcohol. Or maybe it's by giving in and just laying there. We make choices everyday to live as Christ lives. To be that example for Him. So do we just let the pain/satan take over? Do we NOT live as Christ would have us too? If we are out of church, out of Christ...out of God's will then the pain will take over. Satan is in control at that point. Now, I'm not saying that you don't need medication or rest, believe me..I HAVE to take what I'm prescribed, but I'm not taking any pain meds for now. So, does tha...

In reply to the last post of not holding my breath for my meds to be dropped on my door-step on Thursday...to my suprise...THEY CAME! WOW! 8 more injections of humira to find a place in the fridge for! This morning my youngest yells.."where's the cheese"! Nothing like having injections in the cheese bin in the fridge!!!! About the blood work I was waiting for results...well, something messed up so I had to go in and give more Friday AM. Gotta make sure we keep a good record when you're on methotrexate...possible liver failure (among other organs) makes you do this. I certainly keep a check on when it's time and what the results are. So, I should know something next week. Had a wonderful time with my sister and her hubby last night. We enjoyed many laughs and a wonderful steak dinner my hubby fixed! Yes, I live in the south and we say fix, fixed, and fixen! Sis wanted to watch me give my injection of methotrexate. Yep, it's Friday methotrexate day! Then she had...

I didn't realize it was spondylitis awareness month...but I sure would like for folks to actually become aware of this disease! I know it's been a week since my last post. FACT-AS is difficult to diagnose, often taking up to 10 years from the time a patient experiences the first symtoms to the time the patient receives proper diagnosis. FACT-The CDC estimates that AS affects as many as 2.4 million adults in the US...notice I said adults here...fact is, AS also affects children. FACT-we look normal! But, we are in tremendous pain! FACT-Those of us with AS would like for YOU to learn about it! http://www.spondylitis.org/ FACT-re-read my first blog post and you'll see exactly what AS is! Hard week of catching up after vacation with the family. Makes it VERY painful as well. Last week was spent working...working..catching up and getting ready for a VERY busy weekend! Prom for my oldest...she looked BEAUTIFUL! I'm still exhausted from the long prom weekend! I guess, the word...

So this post may actually take me all day--in-between laundry and trying to prepare for Worship tomorrow (Thanks Jesse for selecting all female lead songs the week, I've been weak!) Learning...listening....praising Him! Maybe it's a good thing to listen too all day while your cleaning and unpacking! Thinking I need to thank Jesse! What an AWESOME week of relaxation, sun, fun and friends that we only see once a year during Spring Break! So glad I'm a singer--otherwise I think I would be sooo soar from laughing all week!!! Oh, wait--I mainly was laughing at my husband! Guess my abs (lack of) are used to his crazy self! So how's vacation with AS...a bit hard and at times a struggle. This was really new to me. I've often wondered why "joints" would hurt when traveling, but since this disease hit me hard over the last year--it's new things that I go through. Not having to jump up in the AM was good. Took my time in the mornings. Went ahead and packed the co...

Last night was spent waking to pain through out the night. Pain in the shoulder..then pain in the hip! I think the reason AS folks are soo tired is because we're "not so much" on a night of 8 hours of sleep. Now, that would be something to scream about! Packing for the beach is not an easy task either....one would think it would be the same as without AS...but not so much! I am excited to actually do nothing..not worry about anything and just sit and enjoy the sand, sun and the sound of the ocean. So, when you're on methotrexate and not supposed to be in the sun...are you supposed to vacation in Forks (I have teenaged daughters so if you don't know why I put that..go ask a teenage girl or the mom of one)?? Speaking of methotrexate....Fridays of course are "that shot" day and it always leaves me soo sick to the tummy for a few hours. Joys! Decided that I'd let the hubby inject the B-12 in the right "cheek" this go round. Being left h...

So I am very fortunate to have 4 genertions on both sides! Not many folks can say that. Since I posted my moms side in my last post, thought I'd post my dads as a beginning to this post! To continue the story of me and AS.... Sunday was humira injection--can I just say OUCH! And I'm debating over whether the tummy is the best place..while I'm not bruised now, it hurts for 2 days! The leg does stay bruised for the week (which actually allows you to remember which leg should be next lol), but I'm thinking the pain goes away faster. Going to inject the leg next and ponder over this one! Which is best tummy or leg??? hmmmmm What I love to do, makes me hurt the most! Taking care of my family and being the Fine Arts Director of my church. So you may ask, "why does it hurt you the most"? Well, those with AS know exactly where I'm going with this.... It's hard knowing that for years this stay at home mom has done everything around the house! I love taking ...

4 generations! Love it and very fortunate!!!! So today is what I call shot Friday. On Friday's I inject (tummy) with methotrexate. In the buttocks area a B-12 shot--not an easy task to give yourself a shot in the rear! Sometimes I'm not all that good at it and end up with a terrible bruise and blood on my bath mat, but most of the time it's just a little bruise. Lang (hubby) will give it to me, but a 250lb man "jabbing" a shot in your rear can sometimes leave a bit larger bruise. I do thank him for helping me when I need it though! And that is only the beginning of what he's had to "take over"..another day, another entry"....Daily is a pill-folic acid and if needed (which I don't even take when needed) pain reliever, and let's not forget the vitamins! I also get to inject either the tummy or leg-but the tummy leaves less bruises--every 10 days Humira. Can I just say that a shot of humira no matter where you give it, HURTS! Grit teeth and...

So this idea of blogging has been in my mind for a while now....but the thought of having a diary that is unlocked and everyone reading..well, that kind of bothers me. Having a disease and wanting folks to be aware is the main reason for this blog. A couple of years ago I started having pain. Pain in my lower back and especially my ankles and hands. Nothing like little sausage toes...now don't get me wrong, I love little smokies-in a crock pot for tailgate food-not my toes. And let's not forget the dreaded " kankles " that I now have. For those of you who are not familiar with the word " Kankles "--let me define it for you. It's where your knee and ankle have become one--hence my families term- kankles ! The pain was sooo bad, my primary care doc-after a ton of blood work-sent me on to the rheumy! I was diagnosed with fibromyalgia . The husband always said, I just don't think you have fibro . On a regular visit to primary doc, she says you ...