Ankylosing spondylitis wife, mom, and grandmom!

In October of 2012 my blog was on autoimmune disease and I listed some interesting facts: -50 MILLION AMERICANS suffer from autoimmune diseases -There are over 80 types/names of autoimmune diseases -Can you name an autoimmune disease? Only 17% of folks can. -Did you know that Type 1 diabetes is an autoimmune disease? I would say most know about diabetes but didn't know it was an autoimmune.  Type 2 is NOT!  -autoimmune diseases are conditions in which the body's own immune system can (among other things) cause damage to the skin, joints, and internal organs. The body actually attacks it's own cells. In other words the body kills itself from the inside . -they run in families/are hereditary -over 75% of those affected are WOMEN -it is possible to have more than 1 autoimmune disease at the same time and the symptoms are often similar which makes it difficult to diagnose -autoimmune diseases are a leading cause of disability and death -THERE IS NO CUR...

If you've been following, you know my last post was on knee lubricant injections.  Well, I had 3 in 3 weeks...not a fun procedure, but none the less, when you hear a 70% success rate, hey might as well try it.  Sooo, yea, I'm in the 30% FAIL!  Didn't work.  In chatting about me just wanting to be able to dance at my daughters wedding in May, he says, no surgery talk until next summer.  Obviously he must think I don't have enough time to heal by the wedding.  In the meantime, there is something else in the works for me to try.  Try and give me more time until a knee replacement is all that's left.  More on that, when I actually get all the details. Sooo on to the eyes, well, there are not to good.  Most folks with AS get the diagnosis of iritis, for me, well it's pretty much the same symptoms but actually the AS thinks that my eyeballs are joints and it's causing inflammation of my eyeballs.  I'm currently on steroid drops which cause c...

I've logged in a couple of times thinking I'd post only to log out.  Not for the lack of having something to say, but just nahhh why bother.  October was a month of doctor visits as always.  So, here's the latest. Osteoarthritis-OA ever heard of it.  I would bet that most have heard of that (spell check has) but not ankylosing spondylitis (spell check has not).  Facts on OA- -OA may also be called degenerative arthritis -it affects around 27 MILLION Americans -its the leading cause of chronic disability in the US -there are 2 classifications OA and EOA (erosive osteoarthritis-or inflammatory OA-EOA less common and more aggressive) -studies show a link to siblings and it being hereditary -often worsens with time -there is no cure -there are some treatments-medication, injections, or maybe joint replacement and so on and so on.  So, for me.  I found out the 1st of October that my right knee was basically gone. My ortho doc diagnosed OA....

In my last post I talked about my girls and featured the youngest and her struggles as well as success as she's grown into a beautiful young woman.  Today, I'm excited to say my oldest is engaged to a wonderful man (whom we love).  She has an exciting new job as the Marketing coordinator for Key West Aloe.  It's exciting to see how both of my girls are blossoming into young women!!  Planning a wedding with AS is "challenging" at best.  We have a LOT to do over the next year as we prepare for that special day.  When I occasionally wake up throwing up and have no advance notice that this will happen, or have a major flare, it does make me wonder and pray for none of that to happen on days that are "wedding stuff days"!  Then I'm quickly reminded that I have no control over AS, but I know who does and pray for Him to take care of it!  I place my AS in God's hands! My last 6 weeks have been exhausting and stressful.  I've watched my oldest ge...

Shoulder is progressing in the "healing department", but not as fast as I'd like.  I keep reminding myself the doctor told me a year...ack...a year?!  Physical therapy is..well..physical therapy!   I am feeling better for sure.  Trying to decide if pre-surgery shoulder is better and I do think it is, but there are those times that I think it feels the same...but that's the "not so patient" person talking.  I have to give myself time to heal. I did have someone tell me that they were out of their sling in 2 weeks--kind of jokingly--and I had to explain, my disease--then got a quick-oh?.  I am out of the sling now, but still limited as to what I can do.  I don't know how long until the pain ceases and the motion comes back, but I'll keep trucking! So, back to the disease of ankylosing spondylitis (AS).  This will not heal me.  I probably will have future surgeries repairing joints that are destroying themselves from the inside.  I...

Looking at my last post..Dec 1 so I guess I'm just aiming for monthly here lately.  Well Christmas (holidays) has come and gone.  It was a wonderful time with family.  2011 is gone and 2012 has begun.  I'm not one for making "resolutions" and really think they are a waste of breath!  I feel as we should live each day as if it's our last.  Making every single day count!  Not just Jan. 1st!  I mean seriously how many folks actually keep the resolution they made...I bet it's few to none! Getting diagnosed with a life changing illness will sure make you "think" about "life" and how you live it!  2011 was certainly challenging financially and physically.  The economy is like a slow sinking ship right now and I really don't see an end at the moment.  So changes were made in that area and you know..it's all good changes.  You don't just buy/spend.  You really focus on things that are needed instead of wanted (big difference her...

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...

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...

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...

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...

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...

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 ...