JODI, rheumatoid arthritis/Sjogrens syndrome

I am a 32 year old mother of 3 - ages 6yrs, 3.5yrs and 22mos. My husband and I have been married for 9 years and despite some quirks about each other that we can't stand, we're more in love than ever!

My story starts about 7yrs ago. I was just pregnant with my oldest and started having what I've found now to be Palindromic Arthritis. I had pain that moved all over my body and would literally immobilize me. I was in nursing school at the time and there were days that I came with a mini tape recorder and a ton of blank tapes because there was no way I could write notes all day. I went to the ER because I couldn't walk on my foot. Of course, they could find nothing wrong and sent me home with some prescription strength naproxen. I knew these pains weren't in my head, and no one would listen to me.

As the pregnancy progressed the pains went away when I was about 4 months along. Whew! I thought I was over it! Not so. About 2 months postpartum they started coming back and I dropped my daughter. It was then that I sought a wonderful rheumatologist. My labs showed nothing but a high SED rate and a borderline rheumatoid factor. The pain was controlled with NSAIDs and within 6 months the pains went away. I went a long time before having any trouble again. I'd have it off and on but not enough to incapacitate me. This went on up until just before I got pregnant with my youngest, Lars.

My dear rheumy had just died from a failed liver transplant and this was his replacement in the practice. Nice guy, can't be any older than I am. He did xrays and tests and told me that definitely have rheumatoid arthritis. I had 2 choices - I could start treating this and prevent ruining my joints, or I could go on to have more children and risk it. Well, the Lord spoke for me and even though my husband and I were not trying (we've always had fertility problems!) I found myself pregnant 3 weeks later! What a gift!!!

My pregnancy with him was fantastic. Oh how I love being pregnant! I'm a birth doula so I come by it kind of naturally :) When I was 32 weeks (8 months) pregnant I came down with a sudden bout of aggressive pneumonia (came on and was full blown in less than 24 hours!) I had a high temperature, couldn't eat because I'd vomit it up, was hot then cold, and an xray showed I had rubbish in my lungs. My family doctor took one look at me and admitted me into the hospital for 5 days. My family doctor is the one who is now administering my antibiotic therapy (AP) and is fascinated in the results he's seen with myself and others.

After I had my son in November 2000, all hell broke loose. I am adamant about breastfeeding and it was going so well, other than Lars was colicky as all get-out! But I remember the evening of his Baptism in January (he was about 7wks old) my feet hurt and that pain never went away. Gradually it started to include every joint in my body. Nothing I took helped with the pain. So I went to see my family doctor 3 months postpartum and he drew a bunch of labs. What a mess they were! He called my rheumy and got an appointment with me the very next day. Rheumy said yes, I've got full blown arthritis. He recommended I stop breastfeeding and go on methotrexate immediately. I couldn't do it. As much as the pain was killing me, I couldn't do it.

The course of another 3 months went on and I was also diagnosed with Sjogrens via Schirmers Test and no saliva in my mouth. They kept drawing labs and could not figure out what my body was doing. All they knew is my rheumatoid factor was in the 80's, my sed rate was in the 50's and my ASO Titer was 873. Plus some IgG and IgA levels and just a whole ball of wax.

My doctors were stumped, and my family practitioner admitted to me that he was scared - nothing more sobering when your doctor tells you that! I started noticing some bruising in my feet - like deep tissue bruising. Doctors ran more tests because now they were worried about lymphoma, leukemia, lyme, lupus. I still kept breastfeeding through all of this - it was the only thing I DID have control over and it was the only thing that was going right with my body.

My husband and I then got really freaked out. None of the serious tests came back positive, and I truly felt like I was dying. I really did. I was sleeping in the recliner at night and just writhed with pain. I prayed for the Lord every night to just take me in my sleep because knowing I'd wake up in the morning with the same pain was unbearable to me. Because I was nursing Lars, he laid on my tummy through the night. My husband trucks and I will never forget him having to leave on Sunday night and be gone all week. I'd set up camp in the living room and my poor kids, who should have had mommy taking care of THEM - not vice versa, had to kind of be my caretakers during the week. I slept in my recliner. My hands were closed in fists so my oldest helped me change Lars. Going to the grocery store was all I could do, but we needed food. One morning when Alan was home I needed to go to the bathroom and it took me 1/2 hour just to get out of bed. I was holding onto walls and furniture trying to get to the toilet that was no more than 15 feet away - I couldn't make it in time, I wet myself in the hallway. I couldn't wipe my own bottom anymore. I couldn't brush my teeth. I couldn't enjoy holding my baby - positioning him to nurse was excruciating.

We decided we'd go to Mayo Clinic in Rochester, a 4 hour drive. I brought Lars along because I was still nursing him (6 months). When we got there the doctors could find nothing beyond what my original doctors found, and pieced it all to be Rheumatoid Arthrits. When I look in the transcripts I see that the doctor (head of rheumatology, how sad) said I had moderate pain - MODERATE PAIN?! Had I known this is what he wrote I'd have found the strength to kick him! Moderate pain was what necessitated the doctor and my husband having to help me even step up to sit on the exam table?! JERK! I was given prednisone and instructed to work with my rheumy at home to start methotrexate immediately.

Well I went home on the prednisone, but still refused to do the methotrexate. It was just 10mg of prednisone, but I could already start to feel improvements 3-4 hours after I took the first pill.

This trip to Rochester was traumatic in another way. We stayed in a hotel the night before and I last nursed my son at 5:30am the next morning. I couldn't sleep because the hospital bed was so uncomfortable. I was bawling in pain. My husband helped get me into the recliner so I could nurse (we co-slept with him) and I decided then that that would be the last time I nurse him. It had to be. I figured I'd be put on some high-test meds, but I also decided maybe it was time to give my body a chance to get well without the demands of nourishing another human being. I was in the chair at 3:30am and I bawled for 2 hours as I nursed him for the last time. I wanted to cherish and remember every satisfied grunt, every noisy gulp, every breastfed burp, his gentle little breath on my breast, the way he looked at me - all of it. And I have remembered it vividly. My stepmother was in the area and we arranged to have her come and get Lars. I had never been away from my son in 6 months. I had tried to get him on formula but he hated it - I mean detested it. He'd rather starve. The only way to do this was cold turkey. So she took him home with her for a couple days. That was the most awful feeling - watching her drive away with my son. My husband then helped me into the shower and I bawled for an hour when I watched perfectly good breastmilk run down the drain. I still can't help buy cry when I remember it. This was the only thing that was going right with my body, and I failed at that too. I prayed and prayed in that shower for the Lord to help Lars and I through this detachment. To help Lars to forgive me. As I look back, had I known about AP, I would have NEVER stopped breastfeeding and would still be doing it today at 22 months.

And yet I was too proud to accept help from people who wanted to help me. My church provided meals for us. People offered to come clean and help me with the kids, but I was ashamed of what my house looked like. And I mean it was BAD! There was no way I could burden someone else with my problems. And honestly, I am such a stoic person that I did my best not to let on just how bad it was. I went scrapbooking at a friend's house (a whole group of us do this) one night and her husband helped me carry all my stuff in and back out again when it was time to go. It took me 15 minutes to climb the flight of stairs to the scrapbooking room. I ended up having to leave early because I was getting sick with pain and my hands weren't working anyway. I couldn't even enjoy it anymore. The last thing I wanted was a pity party. I have my dad to thank for that - this is where I got it from. Above everything else, don't EVER show anyone that everything isn't PERFECT.

About a week after I started showing bruising in my feet and had gone to Mayo Clinic, I woke up one morning with vasculitis. I immediately went in to my family practioner and he freaked and got an appointment immediately with my rheumy. My rheumy saw it and freaked. There were students and he had them all come in to show them this is what real vasculitis looks like. A dermatologist came in and did a biopsy, which came back positive for vasculitis but the immunoflourescent came back negative for Henoch-Schoenlien Purpura. Come to find out this is a common thing for those who have Sjogrens. We still don't know why - all bloodwork came back normal.

My prednisone was bumped up to 60mg for 3 weeks and might I say that was an experience! You're dang right I was feeling good! For the first time in months I was cleaning my house - and it was cleaned within an inch of it's life! I was only able to sleep 3-4 hours at night - and the 40lbs I had lost effortlessly since getting really sick, was put right back on. I hated the prednisone. It made me feel a lot better but the side effects sucked.

When I was on these high doses I stumbled across the Road Back Foundation site. And a light went off. I spoke to the wonderful people there and with their knowledge and encouragement I found my way to Doc Sinnott. I started the rest of my life on September 24, 2001 in Ida Grove. My mother-in-law watched my children for the week. My mother came and stayed all week with me in the hotel - we spent precious precious time together and bonded like never before. Her staying with me assured my husband that I was in good hands and he was still able to make a living that week knowing that all was OK.

We were scared about the expense. But you know what? The good Lord had it all taken care of. Once my test came back positive for Mycoplasma Fermentans, the insurance paid all but $250 of it. We'd pay it all if we had to, but this was nice. I came home feeling better - tired, but a lot better, and so happy to see my family again. I weaned off the prednisone on December 5th, having been on it only 6 months. In January 2002 I did another IV clindamycin booster series and have not needed one since! I started Zoloft with this series and my family practitioner supplied me with samples - I never had to pay a dime for it. I have also weaned off that about 2 months ago. Right now I am on supplements from my chiropractor (who has also been a kingpin with my recovery), minocycline and erythromycin. Also Advair for a recent asthma situation - just need it to freeze hard in Minnesota to get rid of ragweed!

I am so thankful for this therapy and the folks that have helped me along with it. I know it has saved my life. I couldn't have gone on last year the way I was going. Starting methotrexate would have devastated me. Staying on prednisone would have devastated me. And I'm still devastated enough by not nursing my son (I'm an attachment parenter/cloth diaperer/birth junkie)

I am doing everything I did before I got sick. I'm cleaning my whole house (whether I like it or not!) I'm getting down on the floor and playing with my kids. I'm mowing my lawn. I'm able to drive without fear of not being able to react because of severe pain. I'm playing my flute. I'm brushing my teeth with a regular toothbrush, not one that spins in circles. I'm pulling my kids in their wagon. I'm pushing them on their swing. I'm walking on my treadmill. I'm a wife to my husband again. I'm cooking meals. I'm enjoying every sunrise and every sunset. I'm painting my kitchen. I've even started back with some doula clients and have finally finished my certification!!!! Not to say I dont' flare from time to time, I do. And the fatique can get me if I'm not careful. BUT I HAVE MY LIFE BACK! AND I'M SO HAPPY!

Today is our 9th Anniversary. Last year was definitely a true test of 'in sickness and in health' - then again I tell my husband it's also been a real test in 'for richer or for poorer'! Our marriage really was put to the test last year. I was not a pleasant person to be around. Coming home time after time to what I was like emotionally and physically - let's just say that I don't know a lot of men that could have put up with it in all honesty.

I also gave my life to the Lord this past March. I attended an event called Crucillo. This was a spiritual renewal event. I have now realized that I went thru what I HAD to go thru, to realize what Christ went thru for me. And the Lord did answer my prayer - I honestly feel that He did not take my life last year because I am supposed to be helping and witnessing to other people. I've given my testimony twice now - and each time it has been different and I've not remembered what I've said until much later. I have many things that happen to my body when I meditate and pray - one constant thing being numb tingly hands with pain shooting thru my fingers - others have felt this and commented on it, without them knowing this is what I experience.

I am so grateful for those that pointed me in the right direction. I will close this now and return to my day enjoying my kids, enjoying the fact that I am able to straighten up my house and do my own laundry. And enjoy the fact that I am married to a most wonderful man who allows Christ to be the center of our marriage :) Not to mention good friends both online and in person who adore me as much as I adore them. And I enjoy the fact that now it's time for me to give back to others and I am able to do that :)

God bless each person on this list.

Jodi Fadness, CD (DONA)
SAHM to Ashlea (6yrs), Katelyn (3.5yrs), Lars (22mos)
Minnesota Doula
RA (7yrs), SJS (1.5yrs) - being saved by the grace of God and AP for 1 year!

You can reach me at fadness@mnns.com


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