A.S. Face 0965: Jen Anderson

Face 965Jen 965My name is Jen Anderson. I am 35, from Memphis Tennessee, I’ve been married to my high school sweetheart for 17 years & we have 3 awesome kids.
I was diagnosed with endometriosis in 02, cluster migraines in 04, severe IBS in 06, Mitral Valve Regurgitation in 07, RA in 09, AS in 10 and Femero Acetabular Impingement Syndrome in 12 (in my records from 07)
My history of weird symptoms started in 04. I woke up one morning & I truly thought my hubby had slapped me in my face while I was sleeping. Half of my face hurt so bad, like it was slapped or sunburned. Opening the fridge was ice cold and warm water from the shower burned so bad that I had to take a cold shower. This is when “slapped face” started. I get it all over now, except below my knees. It always comes with a cluster migraine, fever, illness & sometimes just randomly. I got a solu-medrol infusion last September & my skin hurt so bad that I asked Jesus to take me home. The rheumy wanted me to see a dermatologist. Whatever, I don’t need any more doctors.
In 07 I started having so much pain in my left hip that I sought the help of an ortho. It had bothered me since I was 17 & I really wanted the pain to stop. I was told my hip was misshapen, that I had arthritis & that there was nothing that could be done because I was too young. I was approaching my 28th birthday. The ortho said to come back when I’m 50. He never said I had FAIS.
Spring of 08 I started having allot of problems with my right shoulder. It would burn & hurt so bad. I would just cry out in pain when it got too much to handle. The pain would render my arm unusable. I would ice it until I couldn’t feel it. This pain would come out of nowhere & disappear just as quickly. The pain would usually affect both elbows & wrists but that pain wasn’t as intense. My PCP sent me to a rheumatologist. She had an awful bedside manner. When I would tell her about the pain, she would roll her eyes. I went back for the test results even though I had already decided I would fire her. She diagnosed me with endometriosis in my shoulder! What in the world?! Lazy woman just pulled that out my medical history. I just gave up trying to find an answer. (I found out in October 12 that she had dxed me with fibro, she never told me. I don’t believe that I have it)
I was in a car accident in Sep 08. My whole body went into a flare. I had no other choice but to seek help. I saw rheumy #2 in March 09, he dxed me with RA. I was so freaked out that I didn’t go back for 18 months, when the pain was almost unbearable in my shoulders, elbows & knees. When I returned, he also dxed me with AS. I Google it, since I had never heard of it and didn’t even know how to spell it. That freaked me out so bad that I went into complete denial. Plus I didn’t have any back pain, so I must not have that. I ended up leaving that rheumy for a few different reasons. Rheumy #3 acted like I never mentioned AS. She treated me for RA, never listened to me, tried to kill me 3x with steroids, including the solu-medrol infusion & sent me to other doctors that were a waste of money like a urologist. I’ll get back to this shortly.
In September of 12, I had been dealing with a burning pain in my right elbow for a few months & it had got so bad that I wasn’t able to grip things. I had also started to have a new pain in my bad left hip. So I sought out the help of an ortho once again. He diagnosed me with tennis elbow, he said probably due to the RA. He also dxed me with FAIS. He put my right arm in a brace & sent me to get a shot in my hip. He didn’t even examine me or look at my history. I was telling a friend about this & she recommended that I see her hip doc which has the best reputation in Memphis. He did her surgery & she loved him, his staff & had great results.
I saw him in October 12. He ordered an arthrogram MRI. When I went for the results, he told me that I needed a hip replacement but another colleague of his could try to reconstruct my hip since I was just on the brink of my 35th birthday. I saw his colleague & we came up with a plan. I would get the ultrasound guided hip shots every 5-6 months to hold off a surgery that will take 4-6 months to recover from. I didn’t have 4-6 months of pay stacked up. I have been an in-home child care provider for many years. I had stopped when our youngest went to school but had to start keeping kids again 2.5 years later because of the wreck. The plan was to stop keeping kids when school got out in May 13 & recover over the summer with hopes of going back into the working world. Also in October 12 I started to see a new rheumy. I got the steroid laced hip shot 4 days before having blood work drawn. Rheumy #4 says my blood work looks good and he took me off MTX, mobic and folic acid. I won’t see him a again for over 8 months.
The pain continued to increase. I got my 1st shot at the end of November. I made it through the holidays then come January something had to give. The ortho told me that he couldn’t be my pain management doc and that I had to find someone to take care of that. I was devastated. I believe that doctors don’t take my pain seriously because I don’t have a “real” job & because I’m about 50lbs overweight. This is after I tell docs that I used to teach step aerobics & kick-boxing before the pain and fatigue took me out. I got it in my head that if I just lost weight, I’d feel better. I started exercising on the recumbent bike at the gym at the end of February 13.  About the 3rd time on the bike, I hurt something on the left side. It was a different pain, more intense, but still coming from my hip, I thought. It just wouldn’t go away, it never has. I didn’t see the ortho about it because I didn’t think he’d do anything. Then it just got so bad. I couldn’t do anything past 2 or 3 in the afternoon. I could barely make it through church. It hurts to the touch. I did see my PCP about it. She said that because of my leg length inequality, that I most likely had a stress/hairline fracture on the left side since September when my pain first increased, then I broke it on the bike. Yay. I looked it up, the symptoms fit. Only fix is rest & I wasn’t getting any of that until after surgery.
I finally went to see the ortho after my right ankle went out on me & I fell directly on my behind, middle of April. He took xrays, told me that I probably had hairline fractures that his machine won’t show. Gave me a scrip for pain meds & told me to follow up with the pain management doc. Pain meds for the 1st time after 7 months. I had a pain Med doc appointment this following week. I had been waiting for this appointment for over 2 months. The 1st appointment went great. She was sympathetic because she had just had knee surgery. Told me to get my surgery scheduled & she would see me afterwards for follow up treatment. The next appointment was awful. The whole reason I wanted to avoid seeing a pain management doc. Even with records & doctors to back me up, I was still treated like a drug seeker. Just because I hadn’t scheduled my surgery yet, she assumes I just want the drugs. I explained to her the 1st time I saw her that I couldn’t have it yet due to the strain on our income. I haven’t been back to see her since that apt.
On May 25th I served at church for the last time. After standing on my feet for a few hours that morning, I felt a POP! I was sure that I now have a stress/hairline fracture on the right side. It was a blessing that I stopped keeping kids that week. I go see the ortho for my pre-op appointment. He tells me that I am physically too unstable to operate on. That I would be worse off if I have the surgery. He tells me that all kinds of things can go wrong if he opens me up. I was devastated. I didn’t want to have surgery, I just want relief from the constant pain.
He sends me to a physical medicine doc in his ortho group. This doctor is the last straw. If he can’t help me, I was giving up. I just couldn’t take it anymore. He tells me that I have spondylolisthesis in my L5. That the pain in my pubic bones is probably referred pain from my back. He perscribes me the Butrans pain patch & sends me on my way. Still no answers. After a month on the patch, I go back to see him. I’m in tears before he ever walks in the door. I already know that he isn’t going to help me. He tells me that I need an MRI so I can get a nerve block. I leave his office defeated, knowing that I won’t be able to afford the MRI or block.
After a few more weeks pass and I believe that God gave me a hint. I talking to someone in my small group when I noticed my back hurt. I made another apt with the physical Med doc. He tells me the he wouldn’t spend any more money with his orthopedic group. He feels like I should go back to the rheumatologist. Somehow he missed my dx of AS & RA. How could that be? Do these doctors not even go over my records before seeing me & sending me for expensive tests?
So I go see rheumy #4 Aug 29, 13. It was either him who under medicates me or #3 who will probably lose her licence soon. #4 comes in and asks me how I’ve been. We talk some then I mention the AS dx. He tells me that he missed that somehow. Same story, different doc. He tells me that he doesn’t respect rheumy #2’s dx. Great. He asks if I’m still taking 8-12 advil a day, I am. My ortho told me that I could take up to 12 a day. He orders a bunch of blood work, sends for my arthrogram from Sep & sends me home. Said he’ll call with the results.
So this is what I’ve decided. I am going to live my life as if nothing is wrong to the best of my ability. I’m done with doctors. Unless I’m dying, I ain’t going to see another doctor. I may try to fill my pain patches 1 or 2 more times if I don’t have to see the doc. And that is it. I am done.

Tennessee, United States of America

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5 Responses to “A.S. Face 0965: Jen Anderson”

  1. Dear Jen,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

    • Jennifer,

      I have kind of a different perspective on your story than other folks will have because I have (in a long distance way) lived it with you. My heart rejoiced with you each time you would call & tell me of what looked to be a positive result from a conversation with a new doctor, agonizing with you over the test results & sometimes even the length of time it would take to get them to you, then cry with you when once again you were so destroyed & devastated from the lack of concern & accurate diagnosis a doctor would give you. Sweetie don’t give up, don’t try to “just live with it” & turn your back on doctors. Think of it this way…..if one of the children were to have cancer & the doctors told you there was nothing they could do for that child wouldn’t you move heaven & earth to find a doctor that would try just one more thing. Wouldn’t you keep looking, keep calling, keep asking questions to everyone until each & ever avenue was exhausted. Well, to me that is how this is. There is not a cure for cancer, there is treatment, & the course of treatment is different for each individual, to me this is the same. There might not be a cure YET but there is treatment, your job is to find the right doctor to give you the right treatment. What’s my job & all your other family & friends…..we are to pray you through this. Pray as though we have never prayed before each & ever day. Pray for healing for you, pray for more pain free days, pray for you on those days that there is pain that it isn’t as bad as the last day, pray you will find the RIGHT doctor & medical staff, pray the doctors will have the PERFECT treatment for you & that you will respond quickly & without those horrible side effects & also pray that if God sees fit to not heal you, not provide relief, not send a doctor your way that you will have His Grace & Mercy to hold your head high & say “this is my thorn that God wishes for me to have”.

      Jennifer you are such a blessing to me. I am so proud to have you as my daughter in law, to see your faith increase each day, to see you rely on the Lord for your very substance & to lead you to the exact doctor that HE wants you to have. I smile when I read your stories of how you try to continue on with life & make it as normal as possible for your family all the time knowing you are dying of pain & more than likely not saying a word to them about it, you just have it & deal with it at that moment. You are a very strong & willful woman, you are a woman of great faith, you are a woman after God’s own Heart now make Him even more proud of you & hang in there. God has a doctor out there for you, He has had some man or woman go to school, train & practiced just for you. Someone who will listen, someone who will READ your chart, someone who will ask questions, someone who will seek answers for you…that person is there, God is going to send that individual your way, I have faith that He will now you hang on to that faith that He will.

      Truly sweetheart I don’t know how you have dealt with the pain & agony you have all these years, I would have caved. I know what pain I have had with my back & how incapacitated it leaves me all too often so to have something such as this for this many years…well I know I could not have dealt with it physically or emotionally.

      Now stop that stinking thinking of just giving up, God does not want you to give up. Jennifer you are not a quitter, you never have been. It appears as though you have found a great site here. A site of other people who will encourage you, lift you up, hopefully pray with you, maybe even can help you find a doctor in your area that is THE RIGHT DOCTOR, I pray that happens.

      I love you so much sweetie, my heart breaks knowing you are hurting so much. I could hear your pain in your words….physical pain & emotional pain. Take a deep breath, inhale/exhale, take a moment to feel those Angel’s wings holding you, caressing you, loving you…feel the whisper, those are Angel kisses.

      Love,
      Mom

  2. Dearest Jen,
    My heart aches for you, as I truly can relate to and feel your pain, both physically and mentally.

    Please, please, please DON’T give up, you have REACHED home plate here, with a group of AS warriors from around the globe! Come to the Faces of AS group page on Facebook, grab a cup of your favorite coffee, tea or whatever it is, and join in, please.

    I certainly hope they start you on one of the Biologics.
    Hang in there Jen…you can’t give up – you have somehow found Cookie, who has led you to the family of AS’ers around the globe. Hold onto Hope xxxxxx

    Candyce
    Faces of AS #700

  3. Don’t give up!!! Don’t let drs discourage you!! Follow your gut instincts, keep moving forward, don’t look back!!

  4. Thank you beautiful ladies! I received a call from the rheumys nurse Wednesday. I didn’t know whether to scream or cry. She said that my gene test was negative, he saw a little OA in my left hip and that my see rate was slightly high at 29, but there is no reason to suspect RA or AS. The most respected hip doctor in Memphis said that I need a hip replacement. The rheumy saw a little OA? I seriously believe that i am out of his rehelm of expertise so he is purpously pushing me away. I told him how I wake up in the middle of the night, 2 or 3 times and have to get in the fetal position to relieve the pain. He said, “well, AS patients that i have heard of have to get out of the bed to relieve pain. Really? So I feel I have no other choice. It will look bad if I find a 5th rheumy. Thank you so much for the encouragement though. I hope that will propel me to seek more help. Prayerfully ~ Jen

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