Many of you haven't known me beyond the 7 years when this all began, so I thought maybe it would make a little more sense to explain how it all started.
On January 18, 2010 I was standing in the hallway at work speaking to a co worker. At the time I was around 16 weeks pregnant and was finally feeling human after suffering severe morning sickness that had resulted in a 10 pound weight loss up until this point.
As I was standing there I suddenly felt as though someone slammed me in the lower back/back of the pelvis with a sledgehammer. I collapsed onto a table next to me out of shock and the sudden inability to stand up. My coworker got my rolling office chair for me and rolled me back to my office where I shut down my work for the day, luckily it was about 6pm, and hobbled to my car and home to rest on the couch the rest of the night.
Now, I had never been pregnant before, so I took it in stride. I went back to work the next day, in a lot of pain, but until now pregnancy had been pretty miserable, so I just figured it was part of it all. I had been diagnosed with Fibromyalgia several years before, which had not given me too much trouble until then, but my drs figured that was basically just making the normal back pain of pregnancy more severe and causing this pain. I have a high tolerance for pain, and at that time I had no reason not to believe them. I've learned a lot about blind belief in drs since then....
Over the next several weeks the pain grew steadily worse eventually leading to the inability to walk much or sit or stand for any length of time. After coming home doubled over in pain and tears one too many times my husband and my Dr decided I was done working for the remainder of the pregnancy. At this point everyone was assuming, and saying, that once I had the baby everything would be fine and go back to normal.
I should note that pre pregnancy I was extremely active and in excellent shape. I worked out at the gym for an hour 5 days a week and did pilates 3 days a week. I had worked 2 jobs, one involving constant travel, and loved to play tennis and swim and just be active. My husband and I had remodeled our house mostly ourselves with me tiling bathrooms, ripping out windows and hanging cabinets, so "resting on the couch for the remainder of my pregnancy" was not something that made me happy or comfortable. It was against my nature to sit still, so those were tough annoying months, however everyone said they were temporary and it was better for the baby, so that's what we did.
Well, childbirth came and went and I was still stuck on that darn couch. Through my OB and my primary Dr there began discussions about the Sacroiliac joints and the damage pregnancy can do to them. The location and symptoms were right on, so off to the Pain clinic I went.
I could write an entire post on the chronic pain clinic, none of which would be flattering, so I will refrain. I will just summarize that I was part of this clinic for nearly 4 years. During that time I was diagnosed with Sacroiliac joint dysfunction (the joints connecting my spine and pelvis were not working properly). This did eventually turn out to be a correct, but grossly incomplete diagnosis that cost me many years of pain.
The treatment for this turned out to be narcotics, 3 targeted (directly into the joint under sedation and x-ray) steroid injections, 4 rounds of radiofrequency nerve ablations (burning of all of the nerves leading to those joints so I couldn't feel the pain), anti seizure medications, trigger point injections (saline injections directly into inflamed muscle, yes, that hurts, a lot), more narcotics, a low dose anti depressant, electrical muscle stimulation, physical therapy.... And I'm sure other things I'm forgetting because it seemed like they were just pulling things out of the air sometimes over those four years. During this time we discovered I have a severe intolerance to anti inflammatory medications such as ibuprofen or Aleve, and to anti seizure medications, and that anti depressants don't help pain much in this case. The only thing out of those that worked effectively and consistently were the nerve ablations. They finally allowed me to go back to work and to actually start thinking about baby #2. Oy.
Pregnancy #2 went similar to the first (other than the massive weight gain that boy caused!) in terms of back pain, but we knew we had those ablations in our pocket for after the baby was born so once again it was just a waiting game.
Congratulations! Baby boy came along by c section, because my pubic joint dislocated during pregnancy because of the instability of my Sacroiliac joints. It was a long recovery, but once I recovered from the c section and dislocated pubic joint, with the help of in home physical therapy, we ran in to the hospital for radiofrequency nerve ablations....and they didn't work......
The answer given when we asked why was "sometimes that happens". I attempted to go back to work like I had planned and left in convulsive tears and pain a mere three hours later after just attempting to sit in my chair for a meeting. My wonderfully understanding and compassionate boss and I came to the conclusion that this wasn't going to work and I left my job of 13 years on long term disability.
Whoa, the emotions from that left me reeling and suddenly I was a stay at home mom, which I had never planned to be. I felt inadequate, useless and like I wasn't pulling my own weight. My life suddenly had different meaning (though at the time I felt that meant "none") and I had to adjust quickly to that, as well as the fact that suddenly I was left without options to make this excruciating pain calm down enough to function. I could hardly stand up and could do nothing without the aid of my trusty pain meds. With a one year old and a four year old.
The very last option at this point was a surgery we had looked at and dismissed before. At the time there were other things to try. So, into my chronic pain Dr I went, bringing my husband knowing he wouldn't let this Dr bully me as he usually did, and we requested a referral to a surgeon and imaging of my spine. Believe it or not, no MRI had been done at this point. Only x Rays. The Dr fought us on these points to the degree that when we left M said "I think he wants you to go to the surgeon and have the surgery and have it fail just so he can say he told you so." This Dr was not our favorite but a necessary evil in the system. All he ever wanted to do was give me more pain medication to make me go away. Ultimately, our relationship ended in a yelling match over the phone because I wanted to go off some of the pain meds. I didn't want to be a zombie, I wanted to treat the problem and I wanted my life back. He wasn't fond of that plan.
So along to Ortho 40 mins from our hours we went. The orthopedic surgeon we saw was fantastic. He was thorough and compassionate. For the first time in 3.5 years I felt like someone was on our side; this brought me to tears in his office in all honestly. He said the words "let me champion this for you. We'll figure it out" and I realized at that moment how unsupported we'd been and how much this had taken over our life. He believed something was missed in my diagnosis. And he couldn't figure out what he was seeing on this MRI I'd finally had done around my Sacroiliac joints. So, he sent me off to his personal friend and colleague in physical medicine and rehabilitation. She was equally caring and compassionate, thorough and showed a genuine interest in helping me. This was the first time in so many years of pain that rheumatology was mentioned. "There's something wonky here on your MRI that I'm not sure about, I think there's something rheumatological going on." She saw the same thing on the MRI the previous Dr had seen.
So, off to rheumatology I went.
Before seeing me in person or speaking to me the rheumatologist diagnosed me. It was such a straightforward image to him and so obvious. It only took getting to the right Dr to have this happen. For those who've lost count this was Dr #6 and nearly 4 years later.
His diagnosis was bilateral sacroiliitis, severe inflammation of the Sacroiliac joints to the point it showed on an MRI. When I saw him in person within 5 mins "there's only one thing that causes bilateral sacroiliitis and that is an autoimmune disease called ankylosing spondylitis." This is a disease where my immune system attacks my healthy body as if it is enemy tissue (like a cold virus or a torn muscle) and does it's best to destroy it. It happens to start in the Sacroiliac joints and moves up the spine and on to other joints, tissue and organs. This causes major inflammation, extra bone formation and lots and lots of pain.
So we had an answer. Finally an answer! And honestly one we didn't even know we were looking for. The time from requesting the referral to orthopedic surgery and the MRI to the final diagnosis was less than 3 weeks. After nearly 4 years, our lives changed dramatically in a mere 3 weeks.
So now what?
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| Around the time it all began |
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