Dr. A prescribed some Flexeril for me in hopes that it would help me sleep better. The pharmacist, also a good friend of mine, recommended I start off by taking a 1/4 of a tablet since it seems to take longer than the indications read to clear your body. I am totally one of those "takes forever for medicine to go away" kinda people so I went for the 1/4 size last night. Still took me awhile to feel sleepy and head to bed, but seemed like I drifted off quicker. I did wake up in the middle of the night though. That was a bummer. However I can honestly say that when I got up this morning at 8:30 I felt a tad more energetic than usual. Not enough that I was jumping straight out of bed all raring to go, mind you, but it's something right? I was expecting to have a narcotic-like haze in my head and am pleased to say that wasn't the case. Again, I don't feel great but I'll take it. Tonight I'll try half a tab and see how that does me.
The eyes flared up and turned reddish/pink on me last night too. Guess I'll be seeing yet another doctor soon. Seriously, I am like so done with all of this crap. I just want to feel like a normal person again.
Saturday, April 28, 2007
Thursday, April 26, 2007
Still at a loss
Had my appt. with the ortho today (love him, btw) and he still has no idea what's going on. I'm not that surprised really. The symptoms I have do point to an auto-immune disease and that's not his specialty. He did say that if Dr. B doesn't think I have AS or some other form of an AI disease, to come back and see him for cortisone injections.
I have a call in to my family doctor to see about the pelvic varices and will be seeing her on Tues. A little nervous about that but no sense in worrying right now until I hear what she says.
My eyes are killing me. They feel bulgy and dry. I've also been fighting horrible hot flashes. Not sure how that connects but it sucks nonetheless. I think I'm gonna call the eye doc back and see if I can get in to be seen or if he wants me to just do the drops. I have held off on taking them because of the contraindications for certain AI diseases. I would think/hope that the retinal specialist knows this and still considers it safe-hence why he gave the drops to me to begin with-but we'll see.
I have a call in to my family doctor to see about the pelvic varices and will be seeing her on Tues. A little nervous about that but no sense in worrying right now until I hear what she says.
My eyes are killing me. They feel bulgy and dry. I've also been fighting horrible hot flashes. Not sure how that connects but it sucks nonetheless. I think I'm gonna call the eye doc back and see if I can get in to be seen or if he wants me to just do the drops. I have held off on taking them because of the contraindications for certain AI diseases. I would think/hope that the retinal specialist knows this and still considers it safe-hence why he gave the drops to me to begin with-but we'll see.
Tuesday, April 24, 2007
My eye
I went ahead and canceled my ophthalmologists appointment simply because I figured that like last time they would dilate my eyes, numb them, poke them, tell me I had epi-scleritis, and send me on my way with drops "in case it hurts really bad." I already have the drops, I don't need to spend more money for that advice, and it will most likely be gone by tomorrow.
After thinking about it some more I called and told them I'd be canceling for today but if it continued or got worse I would come in. The eye drops (just some OTC dry eyes stuff) took out the redness yet it didn't help the pain--which I knew it wouldn't. It is better than the day before, and the day before that, so fingers crossed that it is healing. Either way I will be sure to tell my docs about it. I'm sure this is going to be an on-going battle for me. No sense in running to the eye doc every time...or so I assume. And we all know what assuming does to a person.
After thinking about it some more I called and told them I'd be canceling for today but if it continued or got worse I would come in. The eye drops (just some OTC dry eyes stuff) took out the redness yet it didn't help the pain--which I knew it wouldn't. It is better than the day before, and the day before that, so fingers crossed that it is healing. Either way I will be sure to tell my docs about it. I'm sure this is going to be an on-going battle for me. No sense in running to the eye doc every time...or so I assume. And we all know what assuming does to a person.
Stupid drug
So as I posted yesterday I stopped taking the Ultram and when it wore off I felt the pain rearing it's ugly head again. I popped half a Percocet and the hubby and I settled in to watch Deal or No Deal. Towards the end a very young girl in a tennis outfit was the next contestant and the nicest thing I can say about her was that she's hot. I know, that's pretty nice, right?
She is also very, very, very happy.
Stupidly happy.
Howie asks her what she is going to school for and she tells them she's going to be a Pharmacist. I missed the next exchange (possibly because she talked so fast I couldn't understand a damn word she said, or maybe it was because my brain can only tolerate so much happiness at once) but she said something about being a doctor in four years. Correct me if I'm wrong but most pharmacists do not have MD after their names. In any event, the girl is giddy and peppy and she's making my head hurt and I can't stop laughing at her. That's so mean, I know. Forgive the bully side of me here.
Ryan says, "Just think, one day she could be giving YOU drugs."
"Screw that," I say. "I want whatever she's on now!"
To which he replies, "No you don't. She's on 'stupid.' And no one wants to be on that."
Too true, honey. Too true.
She is also very, very, very happy.
Stupidly happy.
Howie asks her what she is going to school for and she tells them she's going to be a Pharmacist. I missed the next exchange (possibly because she talked so fast I couldn't understand a damn word she said, or maybe it was because my brain can only tolerate so much happiness at once) but she said something about being a doctor in four years. Correct me if I'm wrong but most pharmacists do not have MD after their names. In any event, the girl is giddy and peppy and she's making my head hurt and I can't stop laughing at her. That's so mean, I know. Forgive the bully side of me here.
Ryan says, "Just think, one day she could be giving YOU drugs."
"Screw that," I say. "I want whatever she's on now!"
To which he replies, "No you don't. She's on 'stupid.' And no one wants to be on that."
Too true, honey. Too true.
Monday, April 23, 2007
So much for feeling good
Holy smokes. I haven't felt this bad in a long time. I feel like someone ran me over with a steamroller. I didn't want to take the Ultram today but since I am doing my best to give it a good shot, I did. I think I screwed up by only eating a biscotti for breakfast...with my cappuccino. Not the brightest move, I know. I can't say that that was the reason I have been feeling like crap all day, though, given I already felt horrid to begin with. As the day progressed I got worse and worse. Took a nap yet don't feel rested. I did at least break the low grade fever I had. At least for now, anyways.
My right eye is killing me. I put some drops in both (they are both dry and slightly red) which removed the red but didn't help the pain. I called my optometrist and he wants me to get in to see the optho so I have a call into their office as well. I just couldn't do it earlier in case they asked me to come in today. That would not have happened.
Thankfully the Ultram feels like it is FINALLY wearing off. I took one pill at 9 a.m. and it is now almost 5 p.m. I'm still dizzy from it. Takes me forever to metabolize meds.
I also have cramps. I seem to be noticing them more now that I know what's causing them and that it's not "normal post-hysterectomy" stuff. Feels like it used to when Aunt Flo came to visit.
It is days like this that have me questioning if I'm coming down with something or if it's all thanks to my auto-immune disorder(s). Days that make me think there is no way I can wait until May for answers or treatment.
My right eye is killing me. I put some drops in both (they are both dry and slightly red) which removed the red but didn't help the pain. I called my optometrist and he wants me to get in to see the optho so I have a call into their office as well. I just couldn't do it earlier in case they asked me to come in today. That would not have happened.
Thankfully the Ultram feels like it is FINALLY wearing off. I took one pill at 9 a.m. and it is now almost 5 p.m. I'm still dizzy from it. Takes me forever to metabolize meds.
I also have cramps. I seem to be noticing them more now that I know what's causing them and that it's not "normal post-hysterectomy" stuff. Feels like it used to when Aunt Flo came to visit.
It is days like this that have me questioning if I'm coming down with something or if it's all thanks to my auto-immune disorder(s). Days that make me think there is no way I can wait until May for answers or treatment.
Eyeball, eyeball why are you pink?
Still reddish pink today. Annoying. I'll be calling the eye guy today.
On a brighter note I heard a really kickass cover of Alanis Morissette's "You Oughta Know" by Jonathan Coulton. Check it out here. It's, dare I say it?...beautiful.
On a brighter note I heard a really kickass cover of Alanis Morissette's "You Oughta Know" by Jonathan Coulton. Check it out here. It's, dare I say it?...beautiful.
Sunday, April 22, 2007
My daughter's bed
Today, while drinking my favorite cappuccino, I went into my daughter's room where she was sitting on her bed. I sat down with her and we talked. Talked about things such as what color we should paint her room this spring, and if she liked the idea of my building a bookshelf/toy box/window seat combo thingymabob for her, and where all the pictures she had on her walls had come from. Our youngest dog Kya came in and we invited her up on the bed with us. The weather was gloomy today so the bed was more than cozy. Megan and I lovingly stroked Kya and discussed more girly stuff. My son Ian came in and joined us on the bed. He went into great detail about the wolf picture he had drawn freehand and given to Megan (as she's a huge wolf fan) and I remarked that he should be very proud of it (as it is an amazing drawing). I went and got my old drawings out from our bedroom and brought them into Megan's where I returned to my spot on the bed. We slowly flipped through each one and I told them the backstory of the picture. Both kids complimented them all as if they were true works of art. My husband came in a few times and smiled, joked around a bit, and then left us to our peaceful states again. We laughed, we talked, we bonded and in doing so I realized that even if I can't always physically do things with them, there are little things that I hope they'll remember and that will mean the world to them.
Like sitting on the bed on a cold spring day talking about everything and nothing and just being together. I had not felt that good in a long time and I won't soon forget it. I hope they don't either.
Like sitting on the bed on a cold spring day talking about everything and nothing and just being together. I had not felt that good in a long time and I won't soon forget it. I hope they don't either.
Red eyes and Ultram
I started taking the Ultram every 4 hours this weekend to see if it would help the pain and if I could get over the dizziness. I think it's too soon to make a judgment call on the pain issue. There is some improvement yet not a ton. So we'll see how things go. I'm not feeling as dizzy yet I still feel pretty loopy. My husband has commented that I seem "quieter" which I know is from the Ultram. Definitely relaxes me. Weird thing is I do feel a bit more energized. Not sure if that's from getting more sleep over the weekend or from the pills. Time will tell.
My right eye is starting to turn red again, as is my left one. I figure if one or both are still red tomorrow I'll call the eye doctor and see what he says. I have a feeling this will be a recurrent issue w/whatever auto-immune disease is plaguing me. I can deal with it all but if it needs to be treated than I want to make sure I am doing just that. I really don't want to lose my eyes.
My right eye is starting to turn red again, as is my left one. I figure if one or both are still red tomorrow I'll call the eye doctor and see what he says. I have a feeling this will be a recurrent issue w/whatever auto-immune disease is plaguing me. I can deal with it all but if it needs to be treated than I want to make sure I am doing just that. I really don't want to lose my eyes.
Saturday, April 21, 2007
PT and The Rheumy
My first visit with my PT, Denny, went well. He too thought AS was a very real possibility so we started doing core exercises to keep myself as straight and strong as possible in the event that I was fusing. I saw him twice a week and did my exercises at home like a good patient. My husband had also bought a rowing machine and since it was supposed to be low impact, I started rowing. For awhile things were going great. Then I hit a wall. During a particularly tough row I started having a huge amount of pain. I toughed it out, which was probably stupid, and after that I was in hell for quite awhile. Denny stopped pretty much all exercise and started working to get my SI joints moving again by using the u/s machine, manipulation, ice, and estim. The pool became my friend. Denny had me do little movements in the pool or just hang out in there with a noodle. The skin near my pelvis felt as if it were severely bruised--still does. Clothes hurt. Life hasn't been fun.
After being on Naproxen for almost two weeks I started getting ulcer-like symptoms, so I was switched to Celebrex, which made me even sicker. Despite being in pain I stopped the NSAID's. Dr. Andrews office had told me to take Prilosec with the NSAID's but I was worried that it would only mask the symptoms and I would do further damage without knowing it. Instead I relied on my half of a Percocet at night when my symptoms were at their worst. I counted down the days until I could see the rheumatologist so I could hopefully get some answers and maybe get started on a different pain relief regime.
That day of answers came. I went into Dr. Balentine's office with an air of fear, hope, and nervousness. I had heard great things about him and was looking forward to meeting him. Instead I saw his PA. I answered all her questions, she checked me over, agreed that more NSAID's could do more harm, and then he came in. Before my visit, Dr. Andrews had ordered a bunch of blood tests that he knew Dr. Balentine would need. One of those was the HLA-B27 marker test. This is a gene that is associated with AS. Now, just because you have it does not mean you will get AS, and just because you don't have it does not mean you do not have AS. Mine was negative. Dr. B looked over my results, was told that my WBC count was low, as were my Lymphocytes, that I was HLA negative, and other things that I didn't understand. He said he didn't have the right xray views to see if the right joint was affected at all and that I needed an MRI...and more blood work. There was some concern over my right eye--it was red--so I was told to see an ophthalmologist right away to rule out iritis. The PA recommended I start taking Ultram/Tramadol everyday for the pain, but I've been bad about that simply because it used to make me really dizzy (I'm trying this regime this weekend though). And that was pretty much it. He said he knew I wanted an answer but that it would be like pulling one out of thin air at that point. He didn't even tell me what he thought it MIGHT be but did say he didn't think it was AS because it looked as if only one joint was involved and that both had to be if it was AS (I have since read this isn't true). Needless to say I was quite unimpressed and upset. On the way out I picked up my pee cup for that portion of the tests, got my blood work 'scrip, my xray 'scrip, and was told they would set-up the MRI. I also scheduled my follow-up appointment with Dr. B. in MAY--over FIVE weeks away. Yeah, that wasn't cool.
I saw a retinal specialist that day and was diagnosed with epi-scleritis and was told the pressure in the right eye was much higher than the left. This is nothing compared to iritis, which is a relief, but it is indicative of an auto-immune disease and not "good." Unfortunately, epi-scleritis can be associated with several different auto-immune disorders so no way to even guess which one at this point. No big surprise there. A follow-up with my optometrist a week later revealed no more inflammation and that the pressure had equalized. I am to keep an eye on this when it flares up again--it was not the first time, however I had never treated it simply because I attributed it all to allergies (even though it didn't itch).
More blood work was done and the only thing that came back abnormal were my liver enzymes (for some unknown reason). They were elevated. I was negative for all the markers of inflammation but like all the other tests for this type of stuff this doesn't necessarily mean that I am neither inflamed and/or am not arthritic. In fact we know I am arthritic and have an auto-immune disease but it's the "which one" answer that is alluding us--just to be clear.
I had the MRI and xray done on April 19th, and while most of it is Greek to me, I did notice that I have "multiple varices in the pelvis." Varices are basically varicose veins. I was a tad freaked out at first and, as usual, jumped on the internet to research. From what I can gather they call pelvic varices "Pelvic Congestion Syndrome." No one is really sure why it happens yet it doesn't appear that it is anything life-threatening. It causes pain in the pelvic region and other places (re: your va-jay-jay). Reading these symptoms made sense of certain pain I've had...and ignored...for awhile now. Looks like embolization of the affected veins helps a lot of people. Not looking forward to this but maybe it will help resolve other pain I've been dealing with.
The radiologist was very focused on the cysts and lesions in my pelvis which was somewhat of a letdown as we already know those aren't much to worry about--or at least so I've been told. He did say that there were no manifestations of seronegative spondylarthropy seen on the MRI and as of right now I have no idea if that means I don't have AS or if it just means I am not fusing at this point, but could still have it. Also from the report he referenced the SI joints in the plural sense so I assume that both are affected instead of only the left one.
I see Dr. Andrews this Thursday and am really hoping he can make sense of most of my results. I really hate that I have to wait three more weeks until I see Dr. Balentine for his interpretation. I put myself on the cancellation list in case I can get in earlier but I'm not holding out hope. I also left a copy of the MRI and xray report with Denny as he said he'd do his best to let me know what he thought. No word from him yet so we'll see.
At this point I am just hoping it isn't Crohn's. I can pretty much take anything but the thought of Crohn's.
After being on Naproxen for almost two weeks I started getting ulcer-like symptoms, so I was switched to Celebrex, which made me even sicker. Despite being in pain I stopped the NSAID's. Dr. Andrews office had told me to take Prilosec with the NSAID's but I was worried that it would only mask the symptoms and I would do further damage without knowing it. Instead I relied on my half of a Percocet at night when my symptoms were at their worst. I counted down the days until I could see the rheumatologist so I could hopefully get some answers and maybe get started on a different pain relief regime.
That day of answers came. I went into Dr. Balentine's office with an air of fear, hope, and nervousness. I had heard great things about him and was looking forward to meeting him. Instead I saw his PA. I answered all her questions, she checked me over, agreed that more NSAID's could do more harm, and then he came in. Before my visit, Dr. Andrews had ordered a bunch of blood tests that he knew Dr. Balentine would need. One of those was the HLA-B27 marker test. This is a gene that is associated with AS. Now, just because you have it does not mean you will get AS, and just because you don't have it does not mean you do not have AS. Mine was negative. Dr. B looked over my results, was told that my WBC count was low, as were my Lymphocytes, that I was HLA negative, and other things that I didn't understand. He said he didn't have the right xray views to see if the right joint was affected at all and that I needed an MRI...and more blood work. There was some concern over my right eye--it was red--so I was told to see an ophthalmologist right away to rule out iritis. The PA recommended I start taking Ultram/Tramadol everyday for the pain, but I've been bad about that simply because it used to make me really dizzy (I'm trying this regime this weekend though). And that was pretty much it. He said he knew I wanted an answer but that it would be like pulling one out of thin air at that point. He didn't even tell me what he thought it MIGHT be but did say he didn't think it was AS because it looked as if only one joint was involved and that both had to be if it was AS (I have since read this isn't true). Needless to say I was quite unimpressed and upset. On the way out I picked up my pee cup for that portion of the tests, got my blood work 'scrip, my xray 'scrip, and was told they would set-up the MRI. I also scheduled my follow-up appointment with Dr. B. in MAY--over FIVE weeks away. Yeah, that wasn't cool.
I saw a retinal specialist that day and was diagnosed with epi-scleritis and was told the pressure in the right eye was much higher than the left. This is nothing compared to iritis, which is a relief, but it is indicative of an auto-immune disease and not "good." Unfortunately, epi-scleritis can be associated with several different auto-immune disorders so no way to even guess which one at this point. No big surprise there. A follow-up with my optometrist a week later revealed no more inflammation and that the pressure had equalized. I am to keep an eye on this when it flares up again--it was not the first time, however I had never treated it simply because I attributed it all to allergies (even though it didn't itch).
More blood work was done and the only thing that came back abnormal were my liver enzymes (for some unknown reason). They were elevated. I was negative for all the markers of inflammation but like all the other tests for this type of stuff this doesn't necessarily mean that I am neither inflamed and/or am not arthritic. In fact we know I am arthritic and have an auto-immune disease but it's the "which one" answer that is alluding us--just to be clear.
I had the MRI and xray done on April 19th, and while most of it is Greek to me, I did notice that I have "multiple varices in the pelvis." Varices are basically varicose veins. I was a tad freaked out at first and, as usual, jumped on the internet to research. From what I can gather they call pelvic varices "Pelvic Congestion Syndrome." No one is really sure why it happens yet it doesn't appear that it is anything life-threatening. It causes pain in the pelvic region and other places (re: your va-jay-jay). Reading these symptoms made sense of certain pain I've had...and ignored...for awhile now. Looks like embolization of the affected veins helps a lot of people. Not looking forward to this but maybe it will help resolve other pain I've been dealing with.
The radiologist was very focused on the cysts and lesions in my pelvis which was somewhat of a letdown as we already know those aren't much to worry about--or at least so I've been told. He did say that there were no manifestations of seronegative spondylarthropy seen on the MRI and as of right now I have no idea if that means I don't have AS or if it just means I am not fusing at this point, but could still have it. Also from the report he referenced the SI joints in the plural sense so I assume that both are affected instead of only the left one.
I see Dr. Andrews this Thursday and am really hoping he can make sense of most of my results. I really hate that I have to wait three more weeks until I see Dr. Balentine for his interpretation. I put myself on the cancellation list in case I can get in earlier but I'm not holding out hope. I also left a copy of the MRI and xray report with Denny as he said he'd do his best to let me know what he thought. No word from him yet so we'll see.
At this point I am just hoping it isn't Crohn's. I can pretty much take anything but the thought of Crohn's.
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.
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.
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