Why?

Why? What is this blog about, you ask? It's about me and the struggles I have gone, and still am going through trying to get to the bottom of what is ailing me. So far this journey has taken over a year and as of right now I have no diagnosis. Still, my hope is that by sharing my story others dealing with what I am will not feel so alone.

Back in February of 2006 I went to the ER in horrible pain. I was sure I was giving birth to something but knowing that I had had a hysterectomy when I was 25 (a mere 4 yrs. prior to all of this) I knew that was not a possibility. I was given a CT scan and during this they discovered cysts and lytic lesions in my pelvic bones. At that point we were more concerned with my failing gall bladder. Not only was it functioning at 25% but I also had polyps in it. When my surgeon heard about the polyps he said very matter of fact, "It has to come out." Apparently polyps in the gall bladder is both extremely rare and considered pre-cancerous--and usually only seen in the elderly. Given my family history of cancer on my mom's side, the gall bladder was promptly removed.

After the GB surgery I decided to get the lesions and cysts looked into and called the ortho I had seen for my shoulder. They said I needed to see a neurosurgeon. Didn't make sense then, still doesn't, yet I made an appt., was seen, went through a bone scan and more tests, and was told he didn't have the faintest clue as to what he was looking at. He recommended that I wait 6 mos., repeat all the tests, and go from there. This suited me just fine as I was gearing up for my busy season work-wise and had no interest in anymore surgeries for a long time.

Six months passed and I convinced the ortho that this time I needed to see him and not the neuro again. They finally agreed and back to The Center I went. By this point the pain in my pelvic bones had picked up, as had the popping (side note--I had been able to pop my pelvis for years but it was infrequent and not bad--over the course of a few years the popping became more and more frequent and it was becoming painful). My husband and I had taken a trip to Italy and after walking around as much as we did I had finally reached my breaking point. The pain had gotten so bad that I didn't think I'd make it back to our hotel. Thankfully I had a half a Vicoden with me, took that, and made it through. I relayed this story to the ortho when he asked about my pain. Dr. T examined me, dismissed my pain as typical low-back pain caused by being out of shape, and informed me that I had Fibrous Dysplasia. Keep in mind that I weighed about 120 lbs. at a whopping 5' 3" and while I didn't exercise like I should, I knew the pain I was having was most definitely not muscular. Didn't matter. He didn't listen to me. I was told to live my life as normal since FD wasn't a big deal, that I should read about it on the internet, and to call him if the pain got worse. That was it.

So I read. And read. And read some more. During all of this research I found a lovely group of people who were suffering from FD and discovered that this was not a disease that allowed you to live your life like normal. Certain precautions had to be taken as FD makes your bones very brittle and prone to fractures. You need to see specialists/doctors and keep on top of things. So much for Dr. T's "live your life like normal" words of wisdom bullshit. Through these folks I found a specialist up at Oregon Health & Sciences University in Portland and sent him my films and reports.

The man called me at home. I had not seen him, he was not getting paid, and yet he called me at home. I was astounded. Dr. Beals said he did not think I had FD, nor cancer (as was suggested by one of the radiologists) but that he wouldn't stake his reputation on it until he biopsied the sites. On Dec. 13, 2006 up to Portland we went. I had another xray done and we discovered that when I stand on one leg the front part of my pelvis opens up like it does in childbirth. Blessedly this does not cause pain. Dr. Beals seemed somewhat baffled as to what could be causing the lesions, plus it appeared that my left sacroiliac joint was being destroyed. I can't say that the rest of the day went as well as my appt. with Dr. Beals. Even though I had an appointment for the biopsy, and thus a bed reserved in my name, the out patient surgery dept. was overflowing and there was no room for me. Hours passed and my blood sugar started dropping (I have Hypoglycemia). I asked the nurse if I could eat or drink something as I wasn't feeling well and was told, "Sorry, you can't." More hours passed, I got weaker, and I couldn't wait any longer. I handed back the pager they had given me and said this was ridiculous, I was going home. Went back to Dr. Beals' office, told them what was up, phone calls were made, and next thing I knew I was hooked up to an IV with glucose running into my veins. Shortly thereafter I was in the pre-op room waiting for the procedure.

All I can say about the bone biopsy was that it hurt like hell, but I lived through it without crying, screaming, or cussing anyone out. I was wide awake and although I had been given several doses of Versed, I felt everything and was lucid the entire time. The ride home back to Bend wasn't as bad as I thought it would be--maybe it was the Loritab I took. :oD

The results came back as not cancer and not FD. I'm still not real clear on what the lesions are and am ordering reports for my own personal records so I can see what they said. Dr. Beals said I was welcome to continue seeing him but it looked like a form of arthritis. While I really liked Dr. Beals, the trip to and from Portland was a bit much for us. As bad/good luck would have it, I broke my arm in Jan. and had to see an ortho in a completely different practice. I asked if he could recommend another ortho who would be a good fit with pelvic bones and he said Dr. Andrews was the man to see. Yet another appointment was made.

Thankfully I really like Dr. Andrews as well and our appt. was perfect. He listened to me, looked over my charts with careful consideration, and seemed to truly care. He asked if anyone had ever mentioned Ankylosing Spondylitis as a possible diagnosis. They hadn't. I was told that the hallmark of AS is the involvement of the SI joints. Since the left one was being destroyed, this seemed plausible. He prescribed me my first NSAID (Naproxen), was given a prescription for physical therapy, and referred to a rheumatologist.

Once again I read and read and found awesome people who were dealing w/AS. When I read the symptoms they fit me to a "T." Just two years ago I started having horrible stomach issues (water poops, as my friend calls them). This came out of nowhere and was pretty severe. I was labeled as having IBS and left it as such. Then the pain in the pelvis picked up and continued to get worse. Next the extreme fatigue hit. I had always had issues with not feeling rested, ever, but this was different. This fatigue was bone crushing--like the kind I used to get before my period. It was, and continues to be, all I can do to stay awake during the day. I felt like I was getting closer to a diagnosis. I had started physical therapy with a wonderful PT and had an appt. with a rheumatologist. Things were looking up, or so I thought.