It's a story that I have repeated in parts to many, but as I recited it to a friend last night I realized I have never written it down. It's a daily influence in my life, from how I respond to situations to how I teach my children. But what should you expect when God touches your life with a miracle.
It all started with the birth of Tyler. We were so excited to have him home after a week in the
NICU and we were extra busy moving into a new home. I was nursing him for about two weeks, when I woke up one morning and felt like I had been hit by a cement truck. I was 'sore' in every joint especially the knees, elbows and hands. It went on for a week, before I was convinced it was the new mattress we had bought, and begged
BJ at 2:00 a.m. to switch it for the guest bedroom mattress. Dragging them through the house, he reluctantly did. All the while, telling me to hit the gym to work it out. Well, the mattress rotation did nothing to improve my 'soreness.' In fact, by the time Tyler was 3 months old my symptoms had expanded. I could not stand up from a floor position without pulling myself up on furniture. I could not lift Tyler out of his crib without placing my arm into the crib and rolling him onto my arm. My fingers had become so stiff that I could not open the Johnson & Johnson baby lotion. Not that this was not alarming, but it really became crazy when I could not turn off/on a light switch. That motivated me, along with Sarah. SO, I located a random general practitioner and decide to have a mole checked out that had developed during pregnancy. I went, discussed the mole, and then under my breath I told him that 'I have all this soreness in my joints...' He asked to see my hands. By this time, they looked like how I lovingly refer to them as '
Seinfield man hands.' They were huge in the knuckle areas. To put it into perspective, I had gotten completely tired of not being able to wear my wedding rings. I had decided to accept that this was 'what it was going to be like' and had sized my rings. I went from a 6.5 ring size to...hold your breath...a 10 ring size!! It was embarrassing to pick them up at the jeweler when they fit
BJ's thumb, literally.
So, back to the GP. He took one look and said 'You have RA (
rhematoid arthritis). Do you know what that is?' Yes, I had a co-worker whose wife had a terrible case, and had always told me it's a train that starts slow and speeds up.' This same friend's wife would take the entire morning soaking in a tub to even be able to get moving. For some reason, whenever a doctor tells me not so good news, I combat it with 'on a scale of 1-10, doctor, how bad is it?' He responded with '10, there's nothing you can do while nursing your son, so go home and raise him.' I walked to the car with Tyler in hand, and became furious. I went in for a mole check and came out with a confirmed debilitating disease. I got home, took an online quiz, and sure enough scored a 'severe RA' score. I spent about two weeks with this information, when my brother and sister prompted me to get the blood work test. Why the GP didn't feel compelled to send me through blood work rather than blatantly stating I had RA, I will never know. Bedside manner was terribly lacking, though he probably will never know what an impact he had on me. I will always remember him. Three months later, I sat at church and they introduced the treasurer and up walked him...
At this point, I made an appointment with another GP. One that was recommended by family. This GP listened to my story and immediately scheduled blood work. Giving no diagnosis attempt. This I appreciated and found completely more appropriate. The blood work came back clear, including that I was not pregnant. 2 weeks later I found out that I was indeed pregnant with Drew, my second. My symptoms were still the equivalent of a '70 year old with a life time of RA.' It would be unbearable to step out of bed and walk around Life only felt fine if I was completely still. I began to ween Tyler from nursing after learning of Drew's arrival. I nursed Tyler a total of 5 and a half months. Two weeks after I stopped nursing, I woke up and...nothing. I was not sore, I was not stiff, I was not struggling to move, lift, bend. Life returned.
Drew's pregnancy, until the end, was completely normal. I had some bad carpel tunnel at the end, but after the soreness I was willing to be grateful for anything. Drew arrived, and I thought he was the best looking new born I had ever seen. Then the two weeks of nursing came and went...and I slowing began to grow golf ball sized swelling on both my wrists. Swelling in one ankle. And over 20 cysts in my hands. They were painful. I remember that closing the microwave door was unbearable. My back light in my Tahoe had popped out and I remember having to slam it back in. It took everything in me to hit it back in place, cringing under the sheer thought of using my hand to do it (I was alone on the side of the road, I had no choice). That Sunday I went to church and people were gasping at the size of my wrists. That was it. Drew was 9 months old and it was time to deal with what was going on with me.
I made another appointment with the good GP and he immediately sent me to the clinic hand specialist. It was 2 weeks from that appointment. I had started weening Drew and gratefully had been improving! By the time I got to him, the swelling was minimal, but the cysts remained. He was astonished at how many I had, one in particular was very large. He scheduled a MRI, just in case he needed to do surgery, and sent me home in $100 braces to wear. I liked him because he diagnosed me as carpel tunnel. I was happy to not be hearing RA from him. Six weeks later I experienced my first MRI. It was not so bad. I went in for my results and heard 'you have 2 erosion in your carpel bones.' What!?! I was still enjoying my carpel tunnel diagnosis, and I know erosion is really only used with auto immune diseases...this was not going well. Of course, I wanted to know on a scale of 1-10 how bad were they. He responded with 2. Well, 2 might not alarm you. But it did me. I was 27 and had to have these wrists for a lifetime longer and I didn't want to be a 2, I wanted to be a zero or a one. He told me it was not worth moving on to a
rheumatologist, but that I was mostly likely experiencing early signs of RA. Good bye doc, thanks but no thanks, I am moving on to the specialist, with or without you. I don't think I listened to anything else that he said. He was nice, but I was not leaving it at that. Would you?
I called the clinics
rheumatologist and made my appointment with him. I must pause here and say that he was God's grace from this point on. He took time to listen to my symptoms, explain them, stand baffled at me, and very very very slow to diagnosis. At one point he diagnosed me with RA and then changed his stance. Do many doctors admit they might be wrong? Without God providing him, I know my story would have taken a different road. With that said, back to my story.
I gave my run down with the
rheumatologist and he was baffled. He called me the 'fly in the oil.' He explained that hormones are the key factor for me and that normally I should have been symptomatic while the baby was in
utero, not after the baby was delivered. He informed me that my swelling was inflammation, and that the spots were at least a couple degrees warmer than my body. This is the underlying cause of the
erosions. I will leave the medical jargon here, since that is obviously not my expertise.
He told me, had I not had the MRI that showed the
erosions, he would have sent me home. Because of them, it would be irresponsible to not pursue what was going on. So he immediately put me on a steroid (prednisone) and a drug called '
hydroxychloroquine.' The latter is a chemo drug...What? I didn't know that they used chemo drugs for auto immune disease, though with all the information I know now, it makes sense. He told me I would need to be checked every 6 months for my eyes, as it can cause you to go blind. You may ask what??? But it was turn to stone or go blind...not such great options. But I left feeling blessed, because I was labeled and at the time diagnosed as 'joint pain.' He was not quick to give me the devastating diagnosis I was running from, but convinced I had. My brother became medically active in my life and encouraged me that I had 'one life, one body, one chance at eyesight.' He let me know that red is the color that goes first with your eyesight, so life began to pop red everywhere I went. I was constantly checking things on the road to ensure that my sight was still intact. He also opened my eyes to not committing to the first doctor you go to...so I told my
rheumatologist, as you don't marry the first guy you date, I will not stay with the first doctor I visit.' I would be seeking a second opinion, since after all I was taking a chemotherapy drug. It never progressed to that point, since a week and a half into the drug, I experienced the rare side effect listed on the 5 page handout that came with my drug. Rare: Severe HIVES. And, oh, were they!! I would begin to tickle and then the most incredible urge to itch would pursue. Followed by what looked like hundreds of fire ant bites. After about 30 minutes that spot would stop and another would ensue.
BJ and I saw my
rheumatologist at the movie theater on a Friday, and it was his strong arm that kept me from approaching him then and there about the hives. I called Monday morning and reported my discomfort. He had me stop it immediately, stating that if the hives showed up with this drug, you usually ended up being hospitalized. God providing, that did not occur. But it was months before I didn't have random bouts of hives. I returned for another visit with the doc and we decided to pursue an elevated count on my blood work before moving to the next RA drug, methotrexate. It was really the only number out of whack, since my RA test continued to be negative (but it's a cumlative diagnosis). What we then started to explore was rheumatic fever. Which is basically untreated strep that has settled in your joints, causing a heart issue too. But it made sense to research since my strep count was 3 times above normal. Not the highest he has seen, but pretty close. So after penicillin for a month I returned for my blood work, more X-rays on my hands and feet, and results. The strep count did not change, which explains why I haven't really gotten a 'bad case of strep.' The x-rays still showed the
erosions, but because it's open to interpretation, we decided that we would have one of his radiologist friends check it out and confirm the
erosions.
The second opinion radiologist confirmed that he did indeed see
erosions. So, off to the next MRI. This one was more invasive and much longer. The first lasted about an hour and a half. This one, I was injected with a dye and it lasted almost 4 hours. I was given a bathroom break in the middle and only had to repeat one test. It's many tests that last about 5 minutes each and you have to be completely still or you repeat it. So, we were basically looking to see if the
erosions had worsened and if so, I was back on some sort of drug permanently.
It is important to note, that if the drug I had been on had worked, I was told that he (the doc) would have left me on that drug for a lifetime (causing lymphoma). It's because of the hives that he took me off...but in the meantime God had already begun working in me. And His timing was and is perfect, as you can see. I was completely sore-free and inflammation-free during this time. We were just making sure that irreparable damage from
erosions was not occurring.
In November 2007, I received news that the MRI showed that the
erosions remained the same. They were, indeed, still there, but they had not gotten worse. Praise God, a victory! This bought me time on what course of action I wanted to take.
It was here that we discussed ideas about a third baby. We were told to consider the following. Since the symptoms occurred only when I nursed and seem to go into remission when I stopped then it was feasible to believe that another baby could bring it on again with no guarantee that it would go back into remission again (nursing or not). It was stated, if you choose to have another, 'we will get you through it.' Then you hear the stories of all the women that are hospitalized during pregnancy because of RA and you begin to think. Thoughts of 'thank you God for the two you have blessed me with. And thank you God for the health you have restored.' We took actions and we are content with two.
We decided to follow the
erosions by x-ray, since they would be detectable through that type of imaging (my MRI was checking
erosions and inflammations). Since the inflammations had subsided I was comfortable with that.
July 2008, I went in for my latest x-ray. A week later, my doctor call me to report that the
erosions have not only HEALED, but that they have DISAPPEARED for NO explainable reason. He was therefore, dismissing me until otherwise needed. It had been 3 years of chasing, and God had ended it.
Though all this, I cried twice. At one point my
rheumatologist told me 'I am so sorry to tell you this, but you do in fact have RA and it's time to treat it as such." I responded o.k., but told him...'you sound sad.' He said 'I am. You never want to tell someone young like you that they have this disease.' That choked me up. It was always worse to hear others feel sorry for me than to be dealing with it personally. The other was at my 10 year high school reunion, when I had an old friend in the medical industry see my swelling on my ankle. I told him my story and he was very saddened, understanding fully what I was going
thru and what was ahead of me. He immediately encouraged me to pray and not stop.
Through it all, my prayers were about the strength to handle whatever diagnosis came and that the disease would impact my life in a minimal way. But in the end, it changed. I know that our Lord is a Lord of the specifics, and that's what I needed to change. So I started praying that way. I know God answers prayers in His timing and in His way. I thank my family, who has been my rock and my prayer warriors. I thank my 'core friends.' You know who you are!! They have been my encouragement and escape. Most important they have all been there, at my door and on my phone. Calling about appointments and listening to one roll coaster ride after another.
Thank you
BJ for everything. You put up with it all.
My prayer and my praise:
The Lord has solidified that He is present in the storm, carrying and calming my soul.
The Lord has revitalized my faith. It's personal, but never private.
The Lord has sanctified me. He is my Rock, my Fortress, my Deliverer. In Him shall I trust.
The Lord has restored me. The years the locusts have eaten, have been restored.
My prayer is that I always live like I believe, that He was and is with me and that He has healed. me.
A miracle found in me.
Becky, me, Sarah, and Kim
All the gals
Kyle, Sarah, me, and BJ
Kelly and me
Diane and me
