A.S. Face 0351: Pamela Jennings

Deep breath and here I go..

this is really hard for me because I simply didn’t want anyone to know how bad things are for me, but I am tired of hiding……

With the help of God, I will write my story which is so complicated and overwhelming.

I am 41, Mother of the sweetest little girl ever who can make me laugh when no one else can, married to my best friend who has always done everything he can to help me with this awful disease, daughter of the best parents a child could ask for, who would literally lay down their lives for me, this I know…. …….

Ok, begin –As a child I remember crying because my legs would hurt so bad. The only comfort would come when my Mom or Dad would rub them or use Soltice salve on them. The drs told them it was just growing pains. Those pains never went away. When I was 18 I got hit with a pain in my hip that was so bad I couldn’t stand up. I remember I had to buy a recliner so I could stand up easier.

It’s all fuzzy now but at the same time I was diagnosed with Psoriatic Arthritis, hypothyroidism, and alopecia. (diffused alopecia that others couldn’t see but would fill up the sink). I went on to get my degree in education and worked ever since I was 18. I was a secretary for a long time then became a special needs teacher. Which was my heart. I had a lot of pain in my hips and back and my neck kept getting stiffer but I lived a normal life.

After I met my wonderful husband when I was 31, we both had teaching jobs, a new house, so in love, life was good-so, we decided to try for a baby. I thought I had decided I didn’t want any children because of fear, yeah, I have always feared everything. But I prayed about it and told God if it was His will then I knew I would have a child. Literally, the first try we were pregnant! My pregnancy went well. I was just really tired all the time. But during my emergency c section everything went wrong. I didn’t numb completely and I could feel everything. After that, my body freaked out. When I came home, my Mom had to move in with me and help me with my baby because my pain was so bad I could barely move.  I began seeing drs again and finally they decided I had A.S. My spine and neck were fusing.

That was almost 9 years ago. Since then, it has been one battle after another.  I have seen to  so many drs that I have a 4 inch binder full of paperwork. For my pain I have tried everything from chiropractors to hypnosis. I have seen at least 4 alternative drs, tried gluten free diets, Paleo diets, seen kinistesiologists, and so many more that I can’t even mention. I have taken so many different NSAIDS to no avail. I went back to work for a few years but then my job was taken from me and because of that my AS got even worse. The emotional toll was too much. That was in 2009. Since then my life has been a struggle.

About a year ago I started having problems with my left knee and had to have fluid removed. My dr told me at my last visit that it was only getting worse and that I needed to go on Remicade or I could lose my ability to walk, function, etc because the inflammation was so bad. I left in tears. I can’t even begin to explain how OCD I am about all this and how I fear everything. I tried Enbrel 2x and Humira once and I was so “out of it” that I had to stop both after a short time. With the Remicade I have been told of horror stories of cancer (which runs deep in my family) and liver failure, etc. I have also been told of the wonderful stories of getting ones life back. Of being able to play with your children, to go on vacations, to live again. But I don’t know what to do in my case. I am super sensitive to everything and everywhere I go things go wrong and I hear the familiar, “this usually never happens.” So for a week now, I have worried myself sick over what to do.

I have no quality of life right now. But the catcher is most of the side effects with RemciadeI am already experiencing (my hair is coming out in handfuls presently..I have had 6 biopsies and been to the best specialists at Cleveland Clinic who say that I don’t have alopecia areata but there is always a constant reason, it was thyroid and now it is a yeast infection on my scalp!) I have terrible burning and head pain that feels like my head has been beaten and it hurts all way into my eyes and back. Sorry that I went off on this topic but honestly it causes me as much heartache and pain as the AS because it is so painful and frustrating. I can’t even combe my hair anymore, my Mom has to help me, it’s that bad. With each day I lose more and more.  I have lost my self esteem and don’t even want to look in the mirror. I also have terrible fatigue to the point that I have to make myself do things. I get itching a lot for now reason, so this is a lot of the side effects I am told people get with Remicade!! But part of me thinks the inflammation might be causing the awful head pain and hairloss…IDK..but I really do feel alone on this part because I have never talked to one single person who has hairloss with AS unless it’s from the meds. Anyway, I am exhausted physically and mentally, my fusion is getting worse, I can barely move my head or bend, can barely walk because of the knee, and losing all my hair.

My emotional state is so crazy right now because I don’t know what to do. If I take the Remicade and do get something else to deal with it, I simply couldn’t and I couldn’t take it back….SO the stress of the this is too much…I hope you are still with me because it’s taking every bit of energy I have to type this. I can barely see the monitor at this point. My eyes are on fire all the time. I also have my fingernails coming loose from the beds. Just trying to mention everything and hopefully someone can relate. Honestly, at this point if it weren’t for God and my family I don’t know what I would do. I constantly read in the book of Job what he went through and how he remained faithful and was given everything back and then some, but I tell you this AS thing can really shake you to your core..I am missing out on my child’s activities when I thought I could offer her such a great life. I very rarely leave the house. I am ashamed of my hair, my hobble, my stiff neck, my inability to concentrate; I don’t feel like me anymore. I am scared of what people think and that makes me mad too! I don’t want to be like that. I want to be strong, to have more courage, to say, “yeah I am not the same shell but I have the same soul, only stonger.” I was always very outgoing, funny, organized, loved life, dressed up, etc. Now I can barely get out of bed and sometimes have to have help.

I keep hearing people refer to AS AS an invisible disease, but it sure isn’t for me.The heartache is too much at times. I keep praying for a break but thus far, I am only getting worse. For a long time I isolated myself and then I started sharing my story only to be ridiculed and judged. I was told things like , “it could be worse, this will pass, I wish I could just stay home like you. “I was even told that I just wanted attention. SO I started keeping to myself again. But when I started reading all your stories I started  bawling because I was like, “those people are like me, they would understand what I am going through.” So here I am ….reaching out in hopes that maybe I kind find others who I can talk to who not only don’t judge me but completely get me….Love and blessings….

Kentucky United States of America

27 Responses to “A.S. Face 0351: Pamela Jennings”

  1. Dear Pamela, so sorry to hear about your difficult journey. I do hope that you will think hard about trying Remicade. You deserve the chance to feel more able to participate in your own life!

  2. You, Pamela, are so very brave for telling your story. So many of us have been where you are. Symptom after symptom with no hope for cure in sight. Please know you are not alone. It helps so very much to know there are others that understand. And we, your fellow ASers, do understand. Thank you for telling your story ❤

  3. {{Pamela}}

    Thank you for mustering the courage and energy to tell your story. I relate to so much of it, especially the hair loss. That was the lowest point for me. In my situation, it was caused by the Remicade which gave me “synthetic lupus.” When I was taken off that, the hair slowly grew back. You are in my thoughts.

    Daryl (face 134)

  4. Pamela, You are never alone with AS!! Look at the hundreds of stories on here. All I can say is keep your head up and be strong. If you need to chat online Cookie has my contact details. I am story 185. Ross

  5. Pamela, How brave of you to share your story, I haven’t quite got brave enough just yet. I can tell you that I suffered from alopecia from being around 10 years old, long before any AS symptoms surfaced. I went through my childhood totally without hair most of the time. I am now 48 and have some hair but its falling out a little as I wash it ect. I understand what you mean when you talk about the head pain, I feel as though I have been battered around the head as though I have severe bruising all over my scalp, my nails also rise up from the nail bed very easily. I have thyroid problems too, so we sound as though we have a lot of similar things happening. Thank you for sharing your story.

  6. Pamela, Thank you so much for sharing your story. You are so brave. You are not alone. ❤ (((((((hugs)))))))))
    (face 199)

  7. Such an unbelievable story! Thank you for sharing. I know it’s hard to do that. I had hair loss as well but it grew back when I stopped my meds. I hope things get better for you. Big hugs.

  8. Gosh, thank you all for your love and support. It is bittersweet to I’m not alone in this nightmare, but I hate it for each of you. I’ve always had to have a plan for everything in my life, but with this, there’s no control. Kathryn, it breaks my heart to hear you had to deal with alopecia for so long. Drs aren’t very compassionate to what they only consider “cosmetic.” When we know how much it effects us emotionally. It really hurts to hear those of you who say you had to give up your meds to stop it, what a painful choice. The crazy part here is that I’m not on any meds, but will have to be to function. I want to prevent further damage as I am going downhill fast. I have a little girl to raise and I have to do something…it’s just very discouraging to hear that most of you have hairloss with the meds so I guess mine will only get worse. I was hoping it would be the opposite and that the inflammation is causing this and meds would help..I just want to feel feminine and good again. A girl can only hope…xxxxoooo

  9. Dear Pamela, Your story has truly touched my heart. I have fibromyalgia, tendinitis everywhere and lung cancer among other things. A year ago I started a support page for people with Fibro, but as time has gone by, it’s turned into an anything goes kind of page. It’s closed to men, because so many of our members weren’t comfortable talking about a lot of their problems and some of them had been abused as children. We’re like a big, but not huge family now and we’ve learned a lot about each other’s illnesses and have been able to give support and love. If you’re interested in joining, it’s called Fibromyalgia, the new ‘F’ word – I think you might like it there. Anyway…keep up the fight sweets, that’s all we can do, right. I’ll be sending good thoughts your way!

  10. Thanks for making me feel I am in good company by sharing your story. My mother thinks I’ve always made it up. Mine also started in my teens, but was only diagnosed after 30 years since the TNF imbalanced caused cancer also in me. God will reward us double for our trouble. Just believe and accept yourself; it will signal those around you, I’m told. I’m trying it. Hug for you.

  11. Wow, your story brings tears to my eyes. I am sorry that you are suffering so badly, and I pray that you are able to come to a decision that you can make peace with. This disease really does affect each and every one of us in different ways.

  12. Thank you so much…it’s a hard decision when you are told such things as it it gave one cancer as opposed to it was a miracle drug…my OCD can’t deal with it, but my body is failing me for sure….I thought I was strong, but I am seeing that I was wrong as I get worse daily. I can’t accept this, that is one of my problems, I’m in shock every day that I wake up and have another symptom. Just wish I could get a break…..thanks again for understanding….

  13. Dear Pamela,
    Thank you so much for sharing your story with us. I understand how difficult it is and can be, that is why I ended up being Face number 62 on my own project. Thank youfor having the courage to help me make a difference.
    Sincerely Cookie

  14. hey i m 21 nd a patient of AS .. i had a tough time with AS but now my life rocks .. i still have pain nd stiffness .. its been 5 years .. even with the medicines i had a tough time with it .. but now without medicines also i am good .. dont take it as a special disease .. u know disease is in mind .. it doesnt bother you unless it affects your mind … and now i dont let it bother my mind .. strictly stick to yoga and you will see results that you never expected .. your flexibility will be like a 18 yr old..and look at your diet .. a proper digestion is very important to reduce pain.. for any other help email me .. always remember life is precious.. it doesnt matter if u have some hurdles in it .. take care ..

  15. my sweet sis-guin,i am happy you decided to share your story and join us in this fight but am sadden by all the hardship you are going thru.remember you are not alone so you don’t have to hide.we get it because were going thru it too.we may be facing hurtles but we all have AS.here and understand.lots of love and gentle hugs sweet sis

  16. Pamela, I could feel myself welling up reading your story. The start of your AS journey was almost identical to mine. I used to lay on the floor screaming in pain as a 15 y.o. The doctors said exactly the same – growing pains. “You’ll out grow them, chap! Don’t worry!” – 30 years later, still waiting! Take comfort in the people sharing your AS journey, They are wise, funny, kind, loving and inspirational. I can honestly say that I have NEVER met an uninteresting “Spondy”! I really hope that you can find a way to use Remicade or another Anti-TNF, the results will astound you.

    Love, Light and Peace (From across the pond!)

    John – Face #346

  17. Sorry, these comments get lost in my email and I miss them sometimes. Thank you all for your love and and support. I wish I could be in a big room with all of you just so we could share our stories. It feels so good to know I am not alone but my heart hurts to know you too, feel this kind of pain. Love to all of you.

  18. my sweet sis i woud love to meet you in person just to give you a real hug instead of a computer hug.it sadens me that i met so many wonderful people because of this pain we feel.i pray one day we will meet in person because we don’t live very far from each other.there is a room here waiting for that day.lots of love and gentle hugs

  19. Pam I felt such sorrow in reading your AS story. You’re such a beautiful young woman, please don’t ever forget you’re not alone in this fight. I must say, I only joined a few short days ago..yet I feel such a kinship with all these wonderful “faces”. You can share without being the only one with a disease that most people cannot even spell. I too have had substantial hair loss. Even if I did have enough hair to style.. my arms are to weak to wash it let alone all the styling. I opted for a wig about 4years ago. My beautiful and amazing daughter helped me find the PERFECT one! I sure I must sound terribly vain…but I feel like when i feel beautiful on the outside, it helps me cope with what’s going on inside. You sound like a remarkably strong, determined woman with a strong family support system.. love & support of our families is priceless we gain so much strength from them to will ourselves to keep moving forward. I just started Sulfasalizine 5 months ago.. have yet to be on any pain meds either. Just know all theses faces of AS are like those from ” Horton Hears A Who ” who were all banning together with one very loud voice just trying to be heard… “Were here! Were here!! My name is Marge I’m AS face 408… strength in numbers!!
    A smile :0) and a hug….

  20. Oh my goodness, thank you for your reply! I’m in the process of finding another wig. They all hurt my painful scalp so far, you are the first ASer I’ve ever shared this commonality with I do believe. So thank you for this, I know it is a very personal issue for women. I would love to talk to you personally about some things. I want to be comfortable again and be able to enjoy life. With the pain and watching clumps of my hair continue to fall out, I feel a little hopeless at times. But you are right, with my family, and AS friends, and the help of God I will make it some how. Thank you for your kindness. Your pic is beautiful ! Thanks again, meant so much to me.

    • Pamela, So sad to say I am glad to see another face of AS in Kentucky…. Your story touched my heart in many ways. I was diagnosed a little over a year ago & was started on humira immediately because the disease was so far advanced. It has helped me alot. I too have a young daughter whom I want to be able to take care of & make memories she will be able to look back on & smile… I hope you find some relief & in turn more happy times… Always know someone else really knows your pain! Thanks for sharing your story!!

  21. Pam, first off, my prayers are with you. I’m sure I speak for many of us with AS that the feeling of despair and hopelessness that you oftentimes have is one we’ve all gone through. In fact, lately, I hear myself cursing under my breath more and more each day when I can’t do something simple (the word I say most is Darnet, so I guess I’m not quite cursing).

    I’ve tried really hard not to take prescribed medicines to avoid the side affects and instead live through the pain, which is pretty stupid according to my wife when we both know it can relieve some of the pain I have.

    Please hang in there, continue to believe in yourself and God, love your family and know that things will work themselves out, it sounds like you’ve got a great attitude and that’s really all we can control.

  22. Hello Pamela..this is Marge Smith face # 408.
    We have visited a few times via comments in the past. Was just wanting to see how you’ve been fairing this past few months. Was wondering if you had decided to do the Remicade and if it was helpful to you if you had. I’m seeing a new doc on January 3..nervous as to if he will b a “keeper” or added to the various number of unfeeling, uncaring, doctors I’ve seen ..8 & counting. I myself have been asked to try the Remicade. But, like you am wondering if the side effects would be so bad I couldn’t live my life…as it were.

  23. Pamela..so sorry my computer went nutsey cookbook on me couldn’t finish my post. Had to send it then continue. Not sure sometimes if technology is a blessing or a curse! Anyway, just wanted to catch up and to tell you I did find a wig that is not only beautiful, and doesn’t hurt my head terribly, but also makes me feel like an attractive woman again. Which has been a struggle with my arms being so weak. Even if my “own” hair was doable my arms couldn’t do all the curling, drying, etc. I so hope you are doing well and your new year will bring renewed hope and strength. I hope to hear from you and see how things are for you. I have also received two different posts that were meant for you. Not sure how..but it came in my email but were to Pamela Jennings face # 351… so just wanting you to know. Take care.. a smile for you.. :0) Marge face # 408


  25. […] Mayo Clinic| The Faces of AS Genetics Home […]

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