I went to pick up my lab results from my doctor to interpret them myself because I was too impatient for her to call me. Of course I had a hard time figuring out what the heck it all meant. I read it through, decided I was negative, and then my phone rang and my doctors office called to say I was positive for Lyme and the doc wants to go over everything with me on 9/1, next Wednesday.
I am still in denial, so I decided to go get the labs done that the rheumatologist ordered for me yesterday. Because if my HLA-B27 is positive, then I will certainly question Lyme. If it's negative then I will have to accept my Lymey fate. I may have to accept it anyway though, because I reread everything tonight, did a little research, and yes, it does in fact appear positive.++++++++:-(
In the meantime, I sit here, with my swollen, painful feet on a pillow, waiting again, for what is to come next. The whole hurry up and wait game. This is ok though, I keep telling myself that it could be so much worse. I could have something sooo much worse. So in perspective, I should be happy. There are some people out there that would love to "just have Lyme"...
Wednesday, August 25, 2010
Rheumatologist appt
So I went to see Dr. Scully today in Reno. I was sceptical of him, but left the appt satisfied, feeling like he really listened and took time with me. He spent over an hour with me, measuring My range of motion, checking for effusion in all my joints. Turns out, I have the same amount of fluid in both knees, even though the right knee is the one with limited range of motion and with the most pain, stiffness.
He said this definitely does not present like rheumatoid. He feels confident in ruling out RA. However, he believes that if this isn't Lyme, that it may be an HLA-B27 related arthritis. Bodie tested positive for a genetic marker named HLA-B27, which is a marker for ankylosing spondylitis. Bodie doesn't have AS yet, but could possibly develop it as a young adult. I'm familiar with this genetic marker. I didn't know that B27 is also related to other autoimmune arthritic conditions such as reactive arthritis (aka Reiters Syndrome). He said that it does look to him like reactive arthritis and wants to test me for the HLA-B27 marker. Now this is all if the Lyme comes back negative.
If it's autoimmune, then I will start on the same drugs that they treat RA with. He will start me with methotrexate weekly injections, and also initially pairs that with Doxycyline. It's Interesting, he said there are studies that doxycyline can help in the first year or so of symptom onset. Of course this is only if the Lyme is negative.
This morning I called the lab in CA and they said they faxed the results to my doc yesterday, so I called my doc's office and left a message saying PLEASE call me this a.m. with my results! So for now, I wait...................
He said this definitely does not present like rheumatoid. He feels confident in ruling out RA. However, he believes that if this isn't Lyme, that it may be an HLA-B27 related arthritis. Bodie tested positive for a genetic marker named HLA-B27, which is a marker for ankylosing spondylitis. Bodie doesn't have AS yet, but could possibly develop it as a young adult. I'm familiar with this genetic marker. I didn't know that B27 is also related to other autoimmune arthritic conditions such as reactive arthritis (aka Reiters Syndrome). He said that it does look to him like reactive arthritis and wants to test me for the HLA-B27 marker. Now this is all if the Lyme comes back negative.
If it's autoimmune, then I will start on the same drugs that they treat RA with. He will start me with methotrexate weekly injections, and also initially pairs that with Doxycyline. It's Interesting, he said there are studies that doxycyline can help in the first year or so of symptom onset. Of course this is only if the Lyme is negative.
This morning I called the lab in CA and they said they faxed the results to my doc yesterday, so I called my doc's office and left a message saying PLEASE call me this a.m. with my results! So for now, I wait...................
Tuesday, August 24, 2010
Rheumy...
So I had a good couple of days, feel like I'm finally starting to get better. However, I've realized that I am definitely flared up bi-laterally. With the exception of my left elbow and shoulder. So for now it's both feet, both knees, both ankles. The ankles are the newest ones added to my collection of flared joints. I am so tired of people staring at me when I walk. because of my ankles, sometimes I wobble and it probably makes me look a little drunk. Which isn't good when you're taking your daughter to cheer practice, and all the Mom's are staring. Whatever...
Made it through yesterday with only 2 vicodin. 1 in morning and 1 at night. I was going to try and just do Ibuprofen this morning, but I was in a lot of pain this morning, and I have to drive to Reno (1 hour) this afternoon. So I took 1 to ease the pain. Should be worn off by the time I leave.
So I managed to get an appt with a rheumatologist in Reno today. I am so happy for this because at least now I can either rule-out, or confirm a rheumatology diagnosis. This is at the same office that Bodie goes to, but different doc.
I will update after appt.
Made it through yesterday with only 2 vicodin. 1 in morning and 1 at night. I was going to try and just do Ibuprofen this morning, but I was in a lot of pain this morning, and I have to drive to Reno (1 hour) this afternoon. So I took 1 to ease the pain. Should be worn off by the time I leave.
So I managed to get an appt with a rheumatologist in Reno today. I am so happy for this because at least now I can either rule-out, or confirm a rheumatology diagnosis. This is at the same office that Bodie goes to, but different doc.
I will update after appt.
Thursday, August 19, 2010
Back to work- sort of
So my wonderful boss was nice enough to find some work for me to do around the office. I did chart audits yesterday, and today and did patient call-backs. Yesterday was 3 hours at a desk. Then Art and I went out for dinner at a Thai restaurant. I had yellow curry, it was delicious. Unfortunately, I was in horrible pain last night, I had a restless night of sleep. I had the upper back/spine type pain, that wrapped around to my ribs. It made it hard to take a deep breath. THe spine type pain seems to be muscular, but it's so localized to the spine and ribs, it's hard for me to locate exactly.
This morning was rough, but I loosened up enough to be able to go to work. I worked for 4 hours, and loved every minute of it. I love call-backs. I call patients who have been discharged from our hospital to check in on them, their medications, MD appointments, and any concerns they may be having. I love talking with the patients. I can't wait to go back to work, but night shift worries me. I always flare-up at night, what if this happens on a busy night at the hospital?
This morning was rough, but I loosened up enough to be able to go to work. I worked for 4 hours, and loved every minute of it. I love call-backs. I call patients who have been discharged from our hospital to check in on them, their medications, MD appointments, and any concerns they may be having. I love talking with the patients. I can't wait to go back to work, but night shift worries me. I always flare-up at night, what if this happens on a busy night at the hospital?
Monday, August 16, 2010
commonality. 8/16/2010
So, apparently Lyme means different things to different people. I have been online tring to find other stories similar to mine. They are all so different. Some are more neurological in nature, some musculoskeletal. Some complain of a fog like feeling in their mind with anxiety and short term memory loss. Fortunately, I'm not experiencing any of that.
The last two nights my pain level has been through the roof. I woke up last night at 2:30 am, and took a pain pill. I used crutches to go to the bathroom, and walking was so hard it brought tears to my eyes. I hate this pain! Tonight, I am not drinking any fluids so hopefully I don't have to walk to the bathroom.
I called my doc today to ask if I could treat the symptoms so that I can function, work, etc. She said that until she has an official diagnosis she does not want to treat in fear that we may exacerbate the symptoms. Makes sense to me. I called my boss and asked for some sort of desk work, she is going to work on finding something for me, yeah!
The last two nights my pain level has been through the roof. I woke up last night at 2:30 am, and took a pain pill. I used crutches to go to the bathroom, and walking was so hard it brought tears to my eyes. I hate this pain! Tonight, I am not drinking any fluids so hopefully I don't have to walk to the bathroom.
I called my doc today to ask if I could treat the symptoms so that I can function, work, etc. She said that until she has an official diagnosis she does not want to treat in fear that we may exacerbate the symptoms. Makes sense to me. I called my boss and asked for some sort of desk work, she is going to work on finding something for me, yeah!
Sunday, August 15, 2010
August 15th, 3+ weeks!
Yesterday we went to the GE picnic. I sat in a lawn chair while the kids played and had a great time. Art has been very supportive. My feet were pretty swollen and sore when I got home. My knee was also sore. Those are my biggest problems right now, feet, and right knee. Art made salmon and rice for dinner, and I had soy sauce on mine. I mention this because I'm trying to identify food triggers for the severity of my pain and swelling. I went to bed and woke up at approx 4am in severe pain. I took a Vicodin, and had to use crutches to go to the bathroom. Even with the crutches it was torture shuffling 15 feet to the bathroom and back. I didn't sleep well after that, and Art said I was restless and mumbling in my sleep. I woke up at 6:40 with the pain still unrelieved, so I took an Ibuprofen and another Vicodin. It's now 8am and I am feeling better, although sleepy from the second Vicodin.
So back to the Soy Sauce. I read somewhere that people with Lyme avoid gluten, so I was trying to connect the increased pain with the soy sauce. But I read this morning, that it is mosty GI issues that they experience. :-(
So back to the Soy Sauce. I read somewhere that people with Lyme avoid gluten, so I was trying to connect the increased pain with the soy sauce. But I read this morning, that it is mosty GI issues that they experience. :-(
Friday, August 13, 2010
Okey Dokey, here's the breakdown.
I started keeping track on my Microsoft Outlook calendar just so that I could keep track of the craziness happening to my body. So here's the events in a nutshell.
July 22nd, Thurs night: I was on call this night and Art was out of town. Emily wanted to camp out in the front room, so I slept on the couch with the phone close by in case I got called in. I had a restless sleep because my big toe on my right foot started hurting. it felt like it was infected!
July 23rd, Fri morning: I woke up and sure enough, my toe was swollen, red and painful to the touch. I traced back my steps and remembered that I had a pedicure 5 days earlier. I was certain that I got a dang infection from the salon. I went to the Urgent Care to get some antibiotics, and was placed on 7 days of Kelfex, 500mg twice a day. Ok, problem solved!
July 24th, Sat evening. We were having some friends over for dinner, so I was busy cleaning the house and making dinner. My toe still hurt so I was walking on the side of my foot. Throughout the night my foot started hurting, going from a 3/10 pain, to 7/10 pain and walked to bed that night with crutches. I was certain that I gave myself a stress fracture from walking funny on my foot. I decided to wait until Monday and go to Tahoe-Fracture.
Monday July 26th: Saw Dr. Card at Tahoe-Fracture, and he agreed that it looked like a stress fracture. He did an x-ray, however, he told me that this x-ray is only a baseline as stress fractures don't show up on x-ray until they are healing 1-2 weeks into healing. He gave me an air cast and told be to keep it on until I see him next. That evening my L elbow starting aching, and hard to move, I thought it was from the crutches.
Tues July 27th: Right elbow is now horrible pain, with very limited range of motion. Can only hold it in flexed position. Toe feels better, foot feels better. This evening, my left foot and right knee start to ache.
Weds: Left foot swollen,painful; right knee aches; elbow still stiff, painful.
Thurs: Both feet hurt, elbow still stiff, painful. Right knee is now swollen, stiff, painful.
Fri: Went to concert in the park, feel pretty good today, although still aching, I'm more mobile. By the end of the evening, I was hurting pretty bad, couldn't sleep due to pain. Ibuprofen not working, at all...
Sat: Still in pain, back on crutches, elbow improving, can move it more now.
Sun, August 1st: Went back to Urgent Care, because I was scared, this is no longer about an infected toe or a stress fracture! Something is wrong. Could I have Rheumatoid Arthritis like others in my family? Urgent Care Doc said he thinks it's an autoimmune response, an arthritic flare of some sort, likely rheumatoid. He ran about 30 different labs on me. My SED rate was high at 66, and my CRP 22. That is characteristic of an inflammatory process. But what is causing it?
Monday: No real change, still on crutches. Called every doc I could. Got an appointment with my PCP Dr. Aalbers. She did history on me, reviewed my labs (my rheumatoid factor came back negative). She asked me about ticks, I told her that yes I went camping last June and about a week later had a bulls-eye rash. I went to my husbands health clinic at GE and they put me on 1 week of Doxycyline. She said that this looks like lyme disease to her. What? I was sad and sceptical. I am very healthy, no health history, no meds.
Tues: better day, no crutches! I should mention that through all of this, the night time is the worst for me. I still keep crutches by my bed to use for walking to the bathroom. The pain wakes me up every single night, and my joints are all so stiff that I can't walk.
Wed's: Again, feeling better, no crutches. Went to Michaels and Dollar store to get supplies for my daughters birthday party. That evening the pain was through the roof, right foot swollen again, toe swollen, and left foot and right knee pain. I was back on crutches :-(
Thurs: On crutches, went to Walmart to buy groceries. I used one of those driving carts. When I got home my feet were both very swollen and painful. Damn...
Fri: On crutches.
Sat: Feeling better, walking on boot without crutches. Taking it easy today.
Sun: Resting, keeping feet up. feeling pretty good.
Monday August 9th. Follow up with Tahoe Fracture, Dr. Card. He looked at all my joints, pushed and pulled on my "stress fracture" foot, and said no need to do a follow-up x-ray, I am having arthritic flare, see Rheumatologist asap. (I already made an appt with Rheumy, for Sept 7th). Went to work to drop off light duty order. I left upset because I am self concious about how I walk, I know I look funny, and I was trying so hard to walk normal (deliberate right/left stepping), that I know I made myself look even weirder. I'm embarrased.
Tues. Back to PCP Dr. Aalbers. Why do I always cry when I go see her? This whole nightmare has definitely taken a toll on my normally rock-solid emotions! I asked her a million questions, such as even though rheum factor is negative, could I still have it? Why do you think I have Lyme, I never saw the tick, only the rash! How long will this flare-up last? I can't work, function, wash my hair, make my own coffee! Then I cried and she answered all my questions. She is still 90% certain that it is Lyme, and tomorrow will send off my blood to specialty lab in Palo Alto, to get a comprehensive Lyme panel. It will take 1-2 weeks for results.
Wed's, August 11th. Picked Bodie up from the airport (my Mom drove, I don't feel comfortable driving more than 5 miles from home). I am so happy to see him, and missed him sooooo much!
Thurs: Took kids to salon for back-to-school haircuts. That just about did me in. The pain was worst then ever. I took a Vicodin, and considered taking 2, but decided not too(I try not to take them unless I really need to). I sat on the couch and felt sorry for myself (I try not to do this either).
Fri: Decided to transfer all this info from Outlook calendar to this blog, (where I keep my food blog). As if anyone cares about my pity party crapola, LOL. I can't wait to go back to work, and pray that everyone is patient with me, until I can get this madness sorted out. :-)
July 22nd, Thurs night: I was on call this night and Art was out of town. Emily wanted to camp out in the front room, so I slept on the couch with the phone close by in case I got called in. I had a restless sleep because my big toe on my right foot started hurting. it felt like it was infected!
July 23rd, Fri morning: I woke up and sure enough, my toe was swollen, red and painful to the touch. I traced back my steps and remembered that I had a pedicure 5 days earlier. I was certain that I got a dang infection from the salon. I went to the Urgent Care to get some antibiotics, and was placed on 7 days of Kelfex, 500mg twice a day. Ok, problem solved!
July 24th, Sat evening. We were having some friends over for dinner, so I was busy cleaning the house and making dinner. My toe still hurt so I was walking on the side of my foot. Throughout the night my foot started hurting, going from a 3/10 pain, to 7/10 pain and walked to bed that night with crutches. I was certain that I gave myself a stress fracture from walking funny on my foot. I decided to wait until Monday and go to Tahoe-Fracture.
Monday July 26th: Saw Dr. Card at Tahoe-Fracture, and he agreed that it looked like a stress fracture. He did an x-ray, however, he told me that this x-ray is only a baseline as stress fractures don't show up on x-ray until they are healing 1-2 weeks into healing. He gave me an air cast and told be to keep it on until I see him next. That evening my L elbow starting aching, and hard to move, I thought it was from the crutches.
Tues July 27th: Right elbow is now horrible pain, with very limited range of motion. Can only hold it in flexed position. Toe feels better, foot feels better. This evening, my left foot and right knee start to ache.
Weds: Left foot swollen,painful; right knee aches; elbow still stiff, painful.
Thurs: Both feet hurt, elbow still stiff, painful. Right knee is now swollen, stiff, painful.
Fri: Went to concert in the park, feel pretty good today, although still aching, I'm more mobile. By the end of the evening, I was hurting pretty bad, couldn't sleep due to pain. Ibuprofen not working, at all...
Sat: Still in pain, back on crutches, elbow improving, can move it more now.
Sun, August 1st: Went back to Urgent Care, because I was scared, this is no longer about an infected toe or a stress fracture! Something is wrong. Could I have Rheumatoid Arthritis like others in my family? Urgent Care Doc said he thinks it's an autoimmune response, an arthritic flare of some sort, likely rheumatoid. He ran about 30 different labs on me. My SED rate was high at 66, and my CRP 22. That is characteristic of an inflammatory process. But what is causing it?
Monday: No real change, still on crutches. Called every doc I could. Got an appointment with my PCP Dr. Aalbers. She did history on me, reviewed my labs (my rheumatoid factor came back negative). She asked me about ticks, I told her that yes I went camping last June and about a week later had a bulls-eye rash. I went to my husbands health clinic at GE and they put me on 1 week of Doxycyline. She said that this looks like lyme disease to her. What? I was sad and sceptical. I am very healthy, no health history, no meds.
Tues: better day, no crutches! I should mention that through all of this, the night time is the worst for me. I still keep crutches by my bed to use for walking to the bathroom. The pain wakes me up every single night, and my joints are all so stiff that I can't walk.
Wed's: Again, feeling better, no crutches. Went to Michaels and Dollar store to get supplies for my daughters birthday party. That evening the pain was through the roof, right foot swollen again, toe swollen, and left foot and right knee pain. I was back on crutches :-(
Thurs: On crutches, went to Walmart to buy groceries. I used one of those driving carts. When I got home my feet were both very swollen and painful. Damn...
Fri: On crutches.
Sat: Feeling better, walking on boot without crutches. Taking it easy today.
Sun: Resting, keeping feet up. feeling pretty good.
Monday August 9th. Follow up with Tahoe Fracture, Dr. Card. He looked at all my joints, pushed and pulled on my "stress fracture" foot, and said no need to do a follow-up x-ray, I am having arthritic flare, see Rheumatologist asap. (I already made an appt with Rheumy, for Sept 7th). Went to work to drop off light duty order. I left upset because I am self concious about how I walk, I know I look funny, and I was trying so hard to walk normal (deliberate right/left stepping), that I know I made myself look even weirder. I'm embarrased.
Tues. Back to PCP Dr. Aalbers. Why do I always cry when I go see her? This whole nightmare has definitely taken a toll on my normally rock-solid emotions! I asked her a million questions, such as even though rheum factor is negative, could I still have it? Why do you think I have Lyme, I never saw the tick, only the rash! How long will this flare-up last? I can't work, function, wash my hair, make my own coffee! Then I cried and she answered all my questions. She is still 90% certain that it is Lyme, and tomorrow will send off my blood to specialty lab in Palo Alto, to get a comprehensive Lyme panel. It will take 1-2 weeks for results.
Wed's, August 11th. Picked Bodie up from the airport (my Mom drove, I don't feel comfortable driving more than 5 miles from home). I am so happy to see him, and missed him sooooo much!
Thurs: Took kids to salon for back-to-school haircuts. That just about did me in. The pain was worst then ever. I took a Vicodin, and considered taking 2, but decided not too(I try not to take them unless I really need to). I sat on the couch and felt sorry for myself (I try not to do this either).
Fri: Decided to transfer all this info from Outlook calendar to this blog, (where I keep my food blog). As if anyone cares about my pity party crapola, LOL. I can't wait to go back to work, and pray that everyone is patient with me, until I can get this madness sorted out. :-)
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