A.S. Face 2020: Jenn Rather

A.S. Face 2020: Jenn Rather



I'm 40 years old I was diagnosed about 6 years ago after a pain in my eye became unbearable. who would have guessed a pain and a blood test would start dictating my life... I'm still trying to find a Dr here that can manage my symptoms.

A.S. Face 1432: Chrystal Nicole

A.S. Face 1432: Chrystal Nicole

A.S. Face 1083: Angela Sutton

A.S. Face 1083: Angela Sutton

I was diagnosed last year..after I had iritis really bad and my eye doctor ordered blood tests to check for a variety of things. FINALLY after 27 years of pain I had a name to what I had been suffering from…back pain, knee pain, fatigue, hip pain..you name it!!!! I had been to over 10 doctors which some were specialists and said it was all in my head! REALLY???
I am so glad I had a PROACTIVE EYE DOCTOR! Love her!
So I am now taking Enbrel and a naproxen for pain. Still dealing with pain….but more days are better than not. Just wish I could do something about the extreme fatigue?!?!?
Delaware, United States of America

A.S. Face 1074: Michael

A.S. Face 1074: Michael

My name is Michael, I have Ankylosing Spondylitis! I was diagnosed with it this past year but to my surprise I have it extremely bad in my ankles. I don’t know where else that I might have it today I had a MRI done of my lower back to see if anything comes up. I am in constant pain. It is very hard for me to walk! The pain is extreme in my ankles and knees now. I don’t know much about Ankylosing Spondylitis. I learn everyday more and more. I have to find learn more each day!
Delaware, United States of America

A.S. Face 0550: Rachael Drew-Kinuthia

A.S. Face 0550: Rachael Drew-Kinuthia

My name is Rachael Drew-Kinuthia and I live in Delaware.  I am a 36 year old wife and mother of two boys.  I was diagnosed with AS this year after several years of doctor’s appointments and misdiagnosis.  I can remember vividly when things seemed to go awry.  I was 20 years old and complaining of lower back pain.  I took ibuprofen on a daily basis and sometimes it seemed to help.  One day I started experiencing pain in one eye.  I thought I had gotten something in it and tried eyewash then eye drops from the pharmacy.  That didn’t work and a couple of days later my eye was bloodshot.  The pain had increased and I was very sensitive to the light, even inside my house.  A visit to my eye doctor showed no evidence oinfection or any other clear cut problem.  I was prescribed eye drops, which helped me within a few days.  Funny looking back, I didn’t even pay attention to what the script was.  I went on my merry way, so to speak and that didn’t happen again for years.  In the meantime, I was waking up stiff and at times feeling very fatigued.  I went to my primary care doctor with my complaints.  I was in my early twenties and he doubted anything serious was wrong.  I was told to lose weight, which I did need to do anyway, and start physical therapy.  I asked for an x ray and he reluctantly sent me.  Nothing significant was seen but I was back in his office every couple of months with worsening pain.
I was prescribed Vioxx, I think it was 1999/2000.  It helped some but the drug was pulled off the market and I didn’t want anything else! I struggled through the back and hip pain for months and then like magic, it went away.  I couldn’t figure that out but I was happy to feel better.  I started
wondering if it was in my head.  A lot of doctors were telling me that it was my depression causing the pain anyway.  Fast forward to 2003, I got married to a wonderful man and wanted to start a family.  My dad died a couple of months later and I was very depressed.  While grieving and planning the funeral, I found out I was pregnant! I was very excited but almost immediately all of the old symptoms started back up.  I was dumbfounded! What could this be? Was I too stressed out with the death and now big news of pregnancy?
I suffered through so much back and hip pain during that pregnancy.  I hated complaining but I was miserable and soooo tired.  Some of my family members said things like, “you’re always sickly and what is it now, Rachael? Maybe you can’t handle pregnancy!” That made me keep a lot of my suffering to myself.  I was already dealing with hidradenitis suppurativa, another painful illness thought to be autoimmune.  I had surgery scheduled to deal with that and I dared not mention my back pain while I was at it.
I was so excited to become a mom and thank goodness for my husband’s love and support. We got pregnant again rather quickly but decided that was it for me.  The flare-ups of both illnesses was too much for me to endure during pregnancy.  I now had two healthy sons and couldn’t have been happier! But the back and hip pain was now accompanied by redness and pain in my eyes, only one at a time though.  This would happen a couple of times a year.  I had a new eye doctor who told me that these chronic bouts of uveitis were a concern to him because I seemed so healthy.  I laughed and told him I only looked healthy on the outside and went on to list my daily problems.  He started the ball rolling with lab work to check for various diseases like Lyme, Lupus, Rheumatoid Arthritis etc… At that time my only suspicious blood results were an elevated sed rate, very low D levels, and low blood count.  With my stiffness, aches and pains I was referred to a rheumatologist.  She was not helpful to me.  At first, she told me to lose weight, here we go again! She prescribed vitamin D and iron.  I was told to reduce my stress and try an overhaul of my lifestyle, so to speak.  I decided to change my diet and began to walk and exercise at home.  But I popped soooo many pills just to take a walk I don’t know how my poor stomach managed it! But I was sick of hearing about my weight and tired of not joining the family for outdoor activities.
I successfully lost over 75 pounds on my own but I still had pain.  I couldn’t sleep comfortably and sometimes while performing the smallest tasks I’d have spasms or lock up stiff.  I had refills of pred forte(steroid) eye drops because the uveitis would start up every few months.  New symptoms started for me like the bouts of heel pain and tendonitis.  I was walking on crutches or using a cane at times.  And my family kept wondering why I was shorter! WHAT?! Yes, I hadn’t noticed but friends and family kept saying “you were always taller than this Rachael.” I asked about my height in my records and sure enough I had gone from 5’7 to 5’5 and 1/2.  Lucky for me, the rheumy who dismissed my complaints had left the practice! A new doctor from NIH, a research hospital took over my care.  The first visit that we met, he said he was so sorry no one had ever ordered additional x rays and a MRI of my pelvis/lower back.  He explained that my HLA B27 was negative a couple of years ago but that didn’t mean much to
him.  He also shook his head and said there were just too many clues for any physician to have ignored!
Well, my life changed on that day! I cried from the tiring frustration but out of relief too! I was diagnosed as having AS after years of thinking no one would believe anything was wrong.  There’s erosion in my lower back and hips, peripheral joint involvement, recent high blood pressure and chest pain(which tipped off rheumy to possible aortic valve issues) and constant fatigue.  I have been on prednisone to tide me over until lab work and tests clear me for use of a biologic.  I am going back to my rheumy next week and we will be starting Humira or Enbrel.  Its so crazy but you’ve never seen someone so excited over an appointment.  Even with such a heavy hitter of a drug being prescribed (I hate the idea of meds) I am happy!  My
husband is relieved for me because he has seen my ups and downs.  He has literally carried me when I would fall to the floor because of pain in my feet.  He has taken time off of work at times to help me and take care of household chores that I couldn’t do.  I am hoping that this treatment will slow the aggression of my AS down and I can stop being the incredible shrinking woman,
lol!
=
Delaware United States of America

A.S. Face 0162: Bill Havens

A.S. Face 0162: Bill Havens

My name is Bill Havens. I am 40 years, old happily married to the woman of my dreams and I have 4 kids 17 y/o son, 10 y/o daughter, 9 y/o daughter and a 1 y/o daughter and I have been diagnosed with Ankylosing Spondylitis (AS) about year and a half ago. My Saga begins like so many others that suffer from this disease. With the pain, stiffness, fatigue, frustration and feeling like you are crazy because nobody believes you.
Some background: I first injured myself when I was 14 years old at the skating rink I fell when a smaller kid came in front on me and I hit the cinder block wall with my left knee and that was the start. I had to have surgery to repair the damage. Then when I was 19 I was involved in a car accident and injured my right knee and yes had to have surgery on that one also UGH!! So the Dr told me that I have the starting signs on Osteoarthritis in my knees I thought he was crazy I was only 20 years old. So many surgery’s and years later they said there really is nothing they can do about my knees except a knee replacement. I was to young for that because they would just wear out and it would have to be done again. So then I was involved in another accident I was rear ended and that is when the back pain started. So I went to Physical Therapy, Chiropractors, massage therapists and nothing was working. They tried the pain injections, tried to burn the nerve endings and again nothing worked so at this point I was really getting to end of my rope. The Pain and The Frustration of back problems: My knees never worked again correctly after the first injury. I wanted to be a Landscaping designer and that blew my chance at that due to I had to do the labor work first to learn about the business and I couldn’t stand to be on my knees for any long amount of time. My back pain started after my car accident when I was rear ended they did an MRI and found I had a bulging disc on L5/S1 so they started all the therapy and all and nothing helped so I was told to kinda deal with it, so I did taking lots and lots of NSAIDS and a heating pad was my best friend.  That went on for a few years and I dealt with it until yes I was in another car accident this time a person ran a stop sign and this time the impact herniated my disc so again. They wanted to do the shots again and this time I had a reaction to them. I came home and felt off, then the sweats started and I thought I was gonna pass out so I called the Dr and she said this was normal.  I believed her and also decided never again. So my back dr said there is nothing he can really do for me at this point and referred me to a back surgeon. I saw him and he decided to do a Microdisctomy on L5-S1. I felt better after for about 6 months then It started hurting again so I went back to Dr and he checked and did another MRI and said nothing was wrong and said I will see ya in 6 months. My 1 year post op visit came and I was still hurting. He said it takes time to heal. So I just continued to take the Anti-inflammatory and narcotics when the pain was really bad. . So then we were blessed with a new and bigger house (a three bedroom townhouse doesn’t work with 4 kids). We moved on 04/18/11 and were just getting settled and then the same disc ruptured again.  This time it went out and up my spinal nerve. I have never felt pain so bad. I even have had kidney stones and passed it– this pain was worse! So I was taken to the hospital by an ambulance and was admitted because I couldn’t walk.  After 4 days, the surgeon comes in and says we have to do surgery again because this time it was really bad due to all the scar tissue from the surgery before. After the surgery we discovered I have nerve damage in my left foot which left me with a condition called drop foot– not fun!!
My story of AS starts in April of 2010. It started with my hands beginning to hurt and stiffen up, so my family dr sent me to a Rheumatologist.  At my visit, we discussed a lot and she informed me of a lot of things I had no idea about which really help clear things up for me. She sent me for what felt like 3000 x-rays and all kinds of blood work. Nothing came back so this was really frustrating. I knew something was wrong because I felt like crap and it was getting worse. Boy was I in for one rude awakening. I had no idea what was about happening to my body. I felt pain in the lower part of my back which I thought was just my back issues little did I know what it also was, and pain on the lower left side and down my left leg which was from the nerve damage. My entire lower back and left leg felt like it just wanted to stop working. Every morning it literally took me 30-45 minutes to get out of bed even and when I was able to get out of bed every step was painful, each movement that involved the left leg or back was excruciatingly painful. For a few months, I walked easy and slow. No one really had a clue as to what was going on.  My family dr sent me for PT which was like torture every time I went I finally said this is not helping and stopped going. Physical therapy was just a waste of time. It was supposed to help with the pain.  But as I previously said, it was a big waste of time. It didn’t do anything for the pain. My left leg would go numb and feel like it just wanted to give out and sometimes it did. The more I tried to walk through it the worse it got leading up to where I would just hobble around and really have to pay attention to how I walked and not walk on uneven surfaces. I was baffled. All the medical doctors wanted to do is feed me motrin or naproxen. They couldn’t understand why I was in so much pain. I was still slow and with four kids it’s hard to keep up with them thank God for my wonderful wife. I have been living with this pain along with the lower back and left leg issues for 3 years now. With no understanding of what the problem is. No one knew what was going on.
The pain was getting more frequent and worse. The episodes lasted longer and longer. This time was like all the others, except it never left. I was never able to stabilize my back again. For close to 15 years I felt pain in my lower back but this was unlike the past years. It would be extremely painful when getting out of bed, off the couch or even off the floor. It felt as if my back and leg area were shutting down and every movement was forcing it to “wake up” There were times I would be in tears from the pain. There were times I had to use a cane just to help me walk. It was horrible. So my Rheumatologist ran some tests and one thing she found was my LFT’s (liver function Test) were high from all the medication I have taken over the years so I was taken off all pain meds this was hell on earth. She also found out that I have fatty liver disease which from research I have done is from drinking too many sodas which I don’t drink anymore and could be from Fibromyalga that’s another condition I have which causes pain also and yes there is a pill for this. Another fun thing is the medicine for this (Lyrica) causes memory issue so sorry if I’m kinda jumping around. Gotta type when I remember it.      I spent the next few months off all pain medications, I went to see my family doctor and he asked how I was doing I told him ok he didn’t believe me.   He had me take a depression test and it came back moderate to severe depression. We talked about a couple of things to treat the depression.  One is going to a therapist which I can’t afford due to I’m in the process of filing for disability and we only have one income coming in and a $35 copay per visit isn’t in the budget so looks like another pill. So he put me on Cymbalta which also helps with Fibromyalga  and it has worked.  My Rheumatologist advised me that I should go see a pain management Dr. My first visit to him was a sigh of relief he advised that he doesn’t just give out pain meds and I told him that was fine, I have 4 kids to help take care of. I just want to feel better but I had some major issues with the pain right now like I didn’t even have the strength to lift my left leg off of the ground. So he wanted me to read some information he gave and to RX to get an MRI and an EMG then come back in a month.   I did, then we discussed a lot and he advised me to see a shoulder specialist because he suspects the arthritis is also in my shoulder and to get an MRI of my neck because it is starting there also. He also advised me that I had Degenerative Disc Disease. He didn’t have the results of my EMG yet but the Dr at the place I had it done advised me that L5 had damage which controls the top of your foot and outside of your left leg and S1 has some also and the controls the underneath of your foot and the inside of your left leg. This is crazy, I feel like I have to shake my leg to wake it up. I have lost most of the strength and functioning in my left leg I have to wear a brace which the Dr that did my EMG said is the wrong type ( I was given the brace by a person that works for my back surgeon). I should have one molded to my foot.
Now, normally people would be devastated upon hearing they have a lifelong debilitating disease. The way I get thru this I look at as this is the chapter that God has for my right now. I don’t question His plans for me, I just go with them . I was actually relieved. Because I knew I wasn’t crazy.  I knew I wasn’t faking it. It’s pretty hard to fake 15 years of back pain. Currently, I am on Symboni. I inject myself once a month.  This is a new med. I have taken Embrel and Humeria prior and it didn’t work for me.  It doesn’t get rid of the pain it kinda dulls it but I’m hoping this new one works better than the first two. I still have the inflammation in my hands and knees and the pain in the left leg. My neck being stiff and sore is a new pain and my upper back is also a new pain. I’m really praying that this works on the new pains. If I try to do any type of physical activity I get tired really fast and I’m sore for a couple of days. The only time I feel okay is when I don’t do anything at all. I do fear getting bamboo spine. Over the last few weeks I have been getting a pain in my chest and I have had shortness of breath for a while now. I see the Rheumatologist in a couple of weeks. I am worry about the spondylitis attaching to the joints in my rib cage. If this is indeed true that means my chest will eventually seize up and my lungs won’t be able to expand like a normal person. I am 40 years old. I can only lift 25 lbs, I can’t sit for too long without being in pain. I can’t can’t bend over very much, nor can I bend to the side. I can’t turn my neck too much without being in pain. I am on an immune suppressant which leaves me tired all the time. When I tell people what I have I get the same response, “Huh?”.  It’s frustrating to have this disease that impacts my life so much, yet no one has a clue what it is. Even though I get frustrated, I am focused. I won’t let this beat me. I am praying they will find a cure. Who knows? GOD does.  It has the potential to be extremely debilitating. However, I can’t focus on that. I have 4 beautiful kids to focus on. I try to stay active and I wanna start walking but it’s really a struggle. It is difficult because I am limited but I do what I can. I am looking at the disease like a blessing in disguise. Instead of having to put my kids in daycare I am able to be home with them and be a stay at home Dad.  . I also have the assistance of my great kids and wife.  I understand what I have. Now I just have to find what I call, a new “normal” I have to learn to live within it and also figure a way to not let it defeat me.
I am Bill Havens and I’m living Ankylosing Spondylitis!
Bear, Delaware United States of America