Ankylosing spondylitis wife, mom, and grandmom!

Don’t confuse inflammation with weight gain/loss and/or bloating Just let that sink in a minute.  Some have already stopped reading...if you're wanting knowledge and education of inflammatory disease...continue on... Let me just begin this post by saying…yes! I’m going to make some of you mad and you’ll probably unfollow me on social media…I don’t really care. In a world of be careful what you say or post-- In a world of #metoo--- In a world of “political correctness”---- I see a LOT of folks saying (posting pictures) look at all this inflammation I had and now look at me.   Yes!   I see you’ve lost WEIGHT, but I do NOT see inflammation.   So to kick off this New Year full of get your gut right, drink my drink and/or join the gym and everything will be perfect in your life STOP! JUST! STOP!   You are actually insulting those of us who truly suffer from an inflammatory disease; those of us who are PRESCRIBED the only thing that will help with i...

AS has my body, and NOT me! I usually end with this, but today It's going to be the beginning!!  I'm still dealing with the "healing process" from the anterior cervical discectomy and fusion.  I still struggle with the feeling of something in my throat!  I'm continually learning more and more about this horrible disease!  It would be much easier if it just affected one part of my body!!  NOPE!  Instead AS just continually gets more and more of me! Since my last post, we've had some exciting family events.  My youngest got married to a Coast Guardsman who we love!  This 2nd son in our family is a perfect addition.  Thankfully they aren't stationed too far away either!  I'm that mom that would love her family to just all live on the same property LOL!  The wedding was beautiful!  Thankfullly AS didn't rear it's ugly head until the day after--and when it did--WHOA!  Talk about the worst day EVERRRRRRR!  Literally tho...

You may wonder why I blog about this life-long Ankylosing Spondylitis (AS) journey that I’m on.   I didn’t just start right when I was diagnosed.   It took me some time to understand what I had just been told and also time to learn what exactly AS was.   I couldn’t even pronounce it!   Why do I have to deal with this for the remainder of my life?   There were so many questions and still to this day, questions seem to arise. My blogging started simply because there were a few of us AS folks who had “found” each other via the internet.   We all seemed to have the same story to tell, but yet in some aspects our stories varied.   The disease itself may vary, but we were all suffering and finding it hard to locate correct information about AS.   We began sharing and even blogging on the same topics.   Even when we all had the same topic, it seemed our “blogs” were different and helpful! During that time of “group” blogging, I realized I ne...

I write a great blog when I'm laying awake in the middle of the night.  The only problem is I write that blog in my head as I'm trying to go back to sleep.  For those of us who suffer with 24/7 pain, our bodies NEVER rest (sleep) so we often lay awake in pain sometimes for hours.  I really did have a great blog all completed in my head last night..thing is, can't even remember any of it!  Just know it was a great blog! ha That's the other thing those of us who suffer from fatigue and chronic pain face, "brain fog".  It's real folks.  I had to pause a second just to think of the term-brain-fog!  It was lost!  So, here's the crappy blog I can think of right now...LOL.  Just me and AS.... I often chuckle to myself when folks mention how "tired" they are.  If only they knew the "true exhaustion" felt by those of us suffering with ankylosing spondylitis.  It's not a "tired" feeling, but a feeling as if you are stuck in qu...

Please take a moment to read the article.  So, helpful and true for those of us who suffer with this horrible disease called ankylosing spondylitis.  Also, if you could make a donation to this TAX EXEMPT organization that would be awesome!  www.spondylitis.org    By Dr. Walter P. Maksymowych      There are several aspects of Ankylosing Spondylitis that are only now becoming more widely appreciated in the medical community that have major implications for its treatment. As is so often the case, this has arisen following the application of a new technology, in this case Magnetic Resonance Imaging (MRI). This has enabled us to better understand the conundrum as to why patients with AS have a more fragile skeleton despite the overgrowth of bone that is so typical of this disease. This, in turn, has led to the introduction of additional therapeutic approaches for this disease.      Why do patients with AS...

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...

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 ...

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 "...