Ahh, who am I kidding? It is in the mid-70's and sunny. This is our third Christmas in San Antonio and I can't get used to the hot holidays. Short and t-shirts again this year. When we are in the house with the Christmas tree lit watching a holiday movie I can almost forget how hot it is outside and enjoy the holiday. I don't mind the weather during Thanksgiving but there is something about a white snowy Christmas.
It appears Santa came early this year. Jackson has more presents than any 8 month old should have. I am sure its going to take him forever to open even one! This year my hubby and I are not exchanging gifts. I didn't even get him a card. We have been through so much this year that no card or gift can compare to how lucky we are to have each other (I feel a little more lucky). It will be gift enough when we get to move back to Maryland and we get just one night to go out to dinner and a movie!
Today is my first day without steroids and I feel it. My wrists were sore this morning and the skin on my face is a little sensitive but other than that I am doing okay. I still have the allergies I am fighting so I have a sniffly nose and a headache but that seems to be getting better too. It looks like I might be able to enjoy the holidays without too many symptoms after all (crossing my fingers).
Today's Blessing: A quiet dinner with friends and the glorious ham I know is waiting for me!
Monday, December 24, 2012
Saturday, December 22, 2012
I am becoming a hypercondriac
So today was crap. The cedar is so high and I am hurting. I had never had allergies until I moved to Texas and this year it is really bad. I don't like to complain because a lot of people have allergies including my hubby BUT I cant breathe! My lungs are sore and its hard to swallow. My head has been throbing all day. I took some allergy meds and I know its from the cedar but I cant help wonder if its something else.
Every cramp, every time a limb gets tingly and numb, when my lymph nodes are swollen... I always think my Lupus is acting up.
I remember when I was worried about my kidneys. Since then I had my liver biopsy and now I will be having a cardiac catheterization next week. So now I wish all I had to worry about was my kidney.
Oh to think we thought this whole thing was shingles!
Today's Blessing: A crawling baby on the move
Every cramp, every time a limb gets tingly and numb, when my lymph nodes are swollen... I always think my Lupus is acting up.
I remember when I was worried about my kidneys. Since then I had my liver biopsy and now I will be having a cardiac catheterization next week. So now I wish all I had to worry about was my kidney.
Oh to think we thought this whole thing was shingles!
Today's Blessing: A crawling baby on the move
Thursday, December 20, 2012
Early Merry Christmas
No more helmet for Jackson! He had to wear this helmet for 11.5 weeks for 23 hours a day. It started out hard but we got so used to it after a while. For the next few days we need to watch him to make sure he doesn't bang his head on things that he normally would with the helmet. I almost want to put it back on to protect him from his falls! Great timing since he is crawling and climbing all over now.
Wednesday, December 19, 2012
Surprising Best Day in a LONG Time
Yesterday at 0700 I showed up the Methodist Specialty and Transplant Hospital in San Antonio for my liver biopsy. It was scary to be there for the procedure but the staff was great and it was a really nice hospital. They took me back for blood work which was nothing, only 3 viles. Then we were taken to the Cath Lab where I had to put on a gown and get my IV in. My undies, bra and sweats were allowed to stay on, which was awesome but, don't worry, there were still boob shots by 3 new people. I think I have forgotten the tally on that. My blood pressure started out high but lowered substantially throughout the day.
After about an hour of sitting in the room, I was taken into the ultrasound room which turned into my operating room. This is where the first 2 boob shots occurred. I was laying on my back in the table completely covered except for a small area below my chest. The ultrasound said this would be a good place to enter so a little "X" was marked. When the doctor came in he made a comment about rather going through the side but he would just do it through the chest. He numbed the skin and a bunch of layers beneath the skin. Then he tried to jam the 8 inch needle into the liver but was blocked by cartilage. He tried to push through but couldn't and that was not the most comfortable experience I have had. SO, we had to ultrasound again on my right side where another "X" was placed on my ribs. This is where the boob shot comes in because my gown needed to be lifted and my bra needed to come off that side because of where the band sits on my side. I was pushed around so the machine would get a good view of my liver and then again when the doctor gave me some local anesthetics. The side biopsy was much better than in the chest even though it stung more with the numbing agent at first. I never saw the procedure since I closed my eyes but it was over relatively fast, would have been faster had they not try to go through my chest. I was able to see the liver sample that was taken and it looked like a skinny red worm...skinnier than angel hair pasta... like a single piece of saffron.
After the procedure, I was bandaged up and taken back to recovery where my blood pressure was taken every 15 minutes as was my pulse. I had to lay on my right side for an hour to start the clot in my liver so I didn't have any internal bleeding. After the first hour, I was given a box lunch that doesn't really deserve any other mention...hospital food always sucks. I was also given some meds for the pain that was in my side and shoulder. The med was a combo of Tylenol and Vicodin. It was awesome. The pain left and all I was left with was a nice calm feeling. A day that started with scared sad feelings turned out better than expected because for a few hours I could rest and not think about Lupus or why I was there in the first place.
Recovery has been difficult emotionally because I cannot lift anything which means no lifting Jackson. He is having a rough time because his first tooth is coming in. Today I felt the sharp edges that have broken through his gums. Needlesstosay, my husband is my trooper. He has picked up so much slack and even though it has been rough, he never gives up. I could not do this without him. One more day of recovery to go. It isn't too bad today. I feel like I was punched in the ribs and my allergies are giving my lungs a rough time.
Today's Blessings: Friends who helped us with Jackson by making sure he safely made it to daycare so I could make it to the hospital so early. Trusting someone else with your child is hard but they made it so easy. I will always be grateful of them.
After about an hour of sitting in the room, I was taken into the ultrasound room which turned into my operating room. This is where the first 2 boob shots occurred. I was laying on my back in the table completely covered except for a small area below my chest. The ultrasound said this would be a good place to enter so a little "X" was marked. When the doctor came in he made a comment about rather going through the side but he would just do it through the chest. He numbed the skin and a bunch of layers beneath the skin. Then he tried to jam the 8 inch needle into the liver but was blocked by cartilage. He tried to push through but couldn't and that was not the most comfortable experience I have had. SO, we had to ultrasound again on my right side where another "X" was placed on my ribs. This is where the boob shot comes in because my gown needed to be lifted and my bra needed to come off that side because of where the band sits on my side. I was pushed around so the machine would get a good view of my liver and then again when the doctor gave me some local anesthetics. The side biopsy was much better than in the chest even though it stung more with the numbing agent at first. I never saw the procedure since I closed my eyes but it was over relatively fast, would have been faster had they not try to go through my chest. I was able to see the liver sample that was taken and it looked like a skinny red worm...skinnier than angel hair pasta... like a single piece of saffron.
After the procedure, I was bandaged up and taken back to recovery where my blood pressure was taken every 15 minutes as was my pulse. I had to lay on my right side for an hour to start the clot in my liver so I didn't have any internal bleeding. After the first hour, I was given a box lunch that doesn't really deserve any other mention...hospital food always sucks. I was also given some meds for the pain that was in my side and shoulder. The med was a combo of Tylenol and Vicodin. It was awesome. The pain left and all I was left with was a nice calm feeling. A day that started with scared sad feelings turned out better than expected because for a few hours I could rest and not think about Lupus or why I was there in the first place.
Recovery has been difficult emotionally because I cannot lift anything which means no lifting Jackson. He is having a rough time because his first tooth is coming in. Today I felt the sharp edges that have broken through his gums. Needlesstosay, my husband is my trooper. He has picked up so much slack and even though it has been rough, he never gives up. I could not do this without him. One more day of recovery to go. It isn't too bad today. I feel like I was punched in the ribs and my allergies are giving my lungs a rough time.
Today's Blessings: Friends who helped us with Jackson by making sure he safely made it to daycare so I could make it to the hospital so early. Trusting someone else with your child is hard but they made it so easy. I will always be grateful of them.
Sunday, December 16, 2012
Okay, I Am Pretty Scared
This weekend has been tough. Starting Friday, my chest has been tight. I thought Friday I might be getting a cold since I had a little cough and phlegmy-feeling my my chest. After one dose of Dayquil and some Robitussin now I am not sure. The cough has pretty much gone away. However, my chest still feels tight. Is it my lungs or my heart? I have an appointment with the cardiologist tomorrow afternoon. I will probably have to call my doctor in the morning since this doesn't seem to be going away. I wish my pulmonary appointment was earlier but it is scheduled for late January. I might have to try to call a different one to see if I can get in this week or next week...going to be hard with the holidays.
Tuesday is the liver biopsy. That's scary. I know they will give me meds to lessen the pain and the procedure only lasts about 20 minutes but it is still scary. I am also scared about what they will find. Why can't my battle with lupus involve just one problem or two or three? I mean seriously? I can deal with a lot but this is too much. I am tired. Tired of being tired. Tired of being scared.
This is not intended to be a pity party for me.
Today's Blessing: Christmas cookies. Yummy.
Tuesday is the liver biopsy. That's scary. I know they will give me meds to lessen the pain and the procedure only lasts about 20 minutes but it is still scary. I am also scared about what they will find. Why can't my battle with lupus involve just one problem or two or three? I mean seriously? I can deal with a lot but this is too much. I am tired. Tired of being tired. Tired of being scared.
This is not intended to be a pity party for me.
Today's Blessing: Christmas cookies. Yummy.
Tuesday, December 11, 2012
Crawling and a Liver Biopsy
Jackson started crawling. Last night we saw him for the first time moving forward. It is so cute. I guess now we really need to be more careful about where he is playing. I have left him on the floor in his room while I was getting his bath ready but no more! He could crawl into the hall and fall down the steps. It is awesome to see how proud he is.
I was finally able to get a hold of the GI doctor's office today. Their office phone has been messed up for two days. It is annoying when they call and leave a message to call back. I have determined this is not a good thing. If the results were negative they would either A, not call, or B, say the results were good. When they don't say anything I have learned its because they want to review some bad results with you.
My ultrasound shows a fatty liver but apparently that's not too big of a deal and it is very common for the San Antonio area. Guess we eat too much Mexican food. The concerning results are with the blood work (duh). I have a positive ASMA and positive autoimmune globulin...whatever those mean. What it means for me is a liver biopsy on Tuesday, 18 December. No anti-inflammatory meds between now and then. I have to be there at 0700 and my appointment is at 1000. They say it takes about 20 minutes and I will be awake while they stick a needle into my liver. The really crappy part is the recovery which takes 4-5 hours before I can go home.
SO next week I have a follow up with the cardiologist, liver biopsy, eye screening for the plaquenil (lupus med) and Jackson's (hopefully) last helmet appointment. And too think I was going to call the dermatologist for an appointment for my hair/scalp and the dentist since a tooth is bothering me... when do I have time?
Johns Hopkins Lupus Center also contacted me yesterday to get a new patient packet completed, which I did. They also said they still needed my files from the Rheumatologist. So I spent a good portion of my day tracking the files down, which were sent to JH Lupus Center on 28 November. They haven't responded so I am hoping they found them. I have to get copies of all of my records from each doctor to send as well. That's going to take some time, which is getting tighter and tighter...
Oh, and I have to plan our move back to Baltimore and find a house to live in, a daycare for Jackson, and tons of new doctors...
How can this week be so awesome (Jackson) and so horrible (everything else)?
Today's Blessing: Video cameras. Being able to catch all of the awesome on film to watch over and over is wonderful.
I was finally able to get a hold of the GI doctor's office today. Their office phone has been messed up for two days. It is annoying when they call and leave a message to call back. I have determined this is not a good thing. If the results were negative they would either A, not call, or B, say the results were good. When they don't say anything I have learned its because they want to review some bad results with you.
My ultrasound shows a fatty liver but apparently that's not too big of a deal and it is very common for the San Antonio area. Guess we eat too much Mexican food. The concerning results are with the blood work (duh). I have a positive ASMA and positive autoimmune globulin...whatever those mean. What it means for me is a liver biopsy on Tuesday, 18 December. No anti-inflammatory meds between now and then. I have to be there at 0700 and my appointment is at 1000. They say it takes about 20 minutes and I will be awake while they stick a needle into my liver. The really crappy part is the recovery which takes 4-5 hours before I can go home.
SO next week I have a follow up with the cardiologist, liver biopsy, eye screening for the plaquenil (lupus med) and Jackson's (hopefully) last helmet appointment. And too think I was going to call the dermatologist for an appointment for my hair/scalp and the dentist since a tooth is bothering me... when do I have time?
Johns Hopkins Lupus Center also contacted me yesterday to get a new patient packet completed, which I did. They also said they still needed my files from the Rheumatologist. So I spent a good portion of my day tracking the files down, which were sent to JH Lupus Center on 28 November. They haven't responded so I am hoping they found them. I have to get copies of all of my records from each doctor to send as well. That's going to take some time, which is getting tighter and tighter...
Oh, and I have to plan our move back to Baltimore and find a house to live in, a daycare for Jackson, and tons of new doctors...
How can this week be so awesome (Jackson) and so horrible (everything else)?
Today's Blessing: Video cameras. Being able to catch all of the awesome on film to watch over and over is wonderful.
Saturday, December 8, 2012
I had an ephiphany
I was at lunch with my friend and we went to Maggianos Little Italy, one of our favs. I asked the chef what he recommends with the least amount of garlic. Of course, he thought I was crazy. I found something and lunch was great.
It made me think about garlic and the last time I had any. I had a Caesar salad last Friday when my husband and I went out for dinner. I didn't think about all the garlic in the salad but looking back I now think that was responsible for my bad weekend last weekend. The garlic might have brought on the flare that ruined my weekend.
Until I can discuss this with my rheumatologist I think I will stay away from garlic at all costs.
Today's Blessing: The hour massage I had this morning and spending a little girl time with my dear friend.
It made me think about garlic and the last time I had any. I had a Caesar salad last Friday when my husband and I went out for dinner. I didn't think about all the garlic in the salad but looking back I now think that was responsible for my bad weekend last weekend. The garlic might have brought on the flare that ruined my weekend.
Until I can discuss this with my rheumatologist I think I will stay away from garlic at all costs.
Today's Blessing: The hour massage I had this morning and spending a little girl time with my dear friend.
Friday, December 7, 2012
Johns Hopkins Lupus Center Here I Come!
Today I heard back from the Lupus Center at Johns Hopkins. Since I am relocating in February I couldn't get in until Feb 28th. I am pretty amazed at their response. They wanted me to come in next week, which I would have done had I been in Maryland. I am so excited to get to be a patient I hope I am not over-excited. I also am very impressed that Dr. Petri checked my email and responded within a couple of hours. How awesome is it for such a highly sought after specialist to be so attentive to her emails from potential patients. I hope these are signs of good things to come.
Click HERE for the Lupus Center
Also, today my boss was able to make some great progress on getting my paperwork signed so I can go home early. We are cutting out early on our 3 year commitment here in Texas by about 8 months so that means a lot of coordination and paperwork. I hate to leave. I love my job and coworkers. It has been such a positive experience and it has gone by way too fast. Without her I would be waiting a lot longer! Every day is a day closer to being home and being surrounded by my family. I need that so much it hurts sometimes.
Today was so positive.
Today's Blessing: As if the above wasn't enough...Feeling well enough to have a productive day at work.
Click HERE for the Lupus Center
Also, today my boss was able to make some great progress on getting my paperwork signed so I can go home early. We are cutting out early on our 3 year commitment here in Texas by about 8 months so that means a lot of coordination and paperwork. I hate to leave. I love my job and coworkers. It has been such a positive experience and it has gone by way too fast. Without her I would be waiting a lot longer! Every day is a day closer to being home and being surrounded by my family. I need that so much it hurts sometimes.
Today was so positive.
Today's Blessing: As if the above wasn't enough...Feeling well enough to have a productive day at work.
Thursday, December 6, 2012
So Hungry!
So today I am writing early because I am trying to not eat or drink anything before my ultrasounds. I normally wake up between 5 and 530 and drink a glass of milk so I can take my meds. Not today. Not even a sip of water when I brushed my teeth. My appointments are back to back at 9, I know I can make it. I just hope it doesn't mess up any of my meds. Today's ultrasounds are of my liver and my arteries in my neck. Maybe I get to keep my shirt on today... that would be a blessing.
Today's Blessing: Sleeping in a little longer and having more time with Jackson to cuddle.
Today's Blessing: Sleeping in a little longer and having more time with Jackson to cuddle.
Tuesday, December 4, 2012
Specialists, specialists and more specialists
Been through the ringer with doctor appointments this week. Yesterday I went to the Cardiologist for my heart because of the Lupus I am at high risk for heart disease. She said my blood pressure is a little high so I was sent to get a heart scan and an ultrasound of my neck where the arteries move blood to the brain. She also said to get a blood pressure monitor and keep track for a week of morning and evening numbers. I got a pretty good monitor from Costco so I will start that tonight. Will be interesting to see the results day after day. This morning I got to have my heart scan. Pretty uneventful from what I could see. The tech wouldn't say anything except my heart was beating fast. Who knows if that's normal or not. I can say it was much more enjoyable getting ultrasounds of Jackson. So two days in a row I got to take my shirt off for people I've never met before, which is always uncomfortable. No news is good news, anyone else hate that? I hope they call me either way so I can relax or freak out accordingly.
I also had the lovely pleasure of seeing the GI doctor today for my inflamed liver. She didn't seem too worried about it. I did have 6 more vials of blood taken to run more tests. I have an ultrasound on Thursday for my liver too. If my results are not good I might have to have a liver biopsy to figure out whats wrong but she said she doesn't think that will have to happen. SO after all of these appointments I do not have any more answers but I do have some piece of mind. I am a little relieved that nothing stood out.
I also started my Medrol pack today to help with my most recent flare. I can feel it helping but how could it not? I am on so many steroids I have to remind myself I'm not really feeling better, its the meds. Can't push it. And, some good news is I can taken some ibuprofen or a small dose of Tylenol. That might have helped this past weekend. Oh well.
A look forward. Two ultrasounds and waiting. Waiting for all of these results and hoping for the best.
Today's Blessing: Friendly LabCorp employees who make getting blood drawn not the worst experience in the world. I used to hate giving blood but after having Jackson and now Lupus, I'm pretty much used to it. 8 vials in one draw is my max so far.
I also had the lovely pleasure of seeing the GI doctor today for my inflamed liver. She didn't seem too worried about it. I did have 6 more vials of blood taken to run more tests. I have an ultrasound on Thursday for my liver too. If my results are not good I might have to have a liver biopsy to figure out whats wrong but she said she doesn't think that will have to happen. SO after all of these appointments I do not have any more answers but I do have some piece of mind. I am a little relieved that nothing stood out.
I also started my Medrol pack today to help with my most recent flare. I can feel it helping but how could it not? I am on so many steroids I have to remind myself I'm not really feeling better, its the meds. Can't push it. And, some good news is I can taken some ibuprofen or a small dose of Tylenol. That might have helped this past weekend. Oh well.
A look forward. Two ultrasounds and waiting. Waiting for all of these results and hoping for the best.
Today's Blessing: Friendly LabCorp employees who make getting blood drawn not the worst experience in the world. I used to hate giving blood but after having Jackson and now Lupus, I'm pretty much used to it. 8 vials in one draw is my max so far.
Saturday, December 1, 2012
The good, the bad, the ugly
Flaring. I pushed too hard and now I'm paying for it.
This week started out great. I went to my check up at the Rheumatologist and she said I was doing good. She said if we were interested in more children we should do it soon while I'm doing well. They took blood to check my numbers which seemed pretty high. Out of the 7 tests she ran last time I was high in 6 to include kidney, heart, and lung function. So she referred me to get my heart and lungs checked out. The doctor said I can take any OTC drugs needed for pain and I could consume alcohol in moderation. The day after this good appointment the nurse called and said my liver was extremely inflamed and I need to go to a GI specialist. And I was told no more pain meds or alcohol!
So I here I sit on my weekend and my joints are all inflamed and I think I'm getting an ulcer in my mouth. My fingers, knuckles, wrists, elbows, knees and feet are all swollen and sore. My lympth nodes are swollen on my right side. Its incredibly frustrating getting sick when I don't know what I am doing to cause these flares. The Rheumatologist gave me a prescription for anti anxiety. I have had great sleep all week because the meds help me not stress for hours while laying in bed. I guess I pushed too hard at work. I guess I can not work extra hours to make up for the lack of leave I have. I guess I shouldn't care if my house is a mess and laundry hasn't been done in over a week. Glad I thought enough a head to take off my wedding bands since they would definitely have cut off the feeling to my fingers.
So unlike the rest of the young mom's out there who get to play and cuddle with their babies, I get to rest. They get to feed their babies without being in pain from tilting the bottle. They can give fun baths because kneeling next to the tub doesn't hurt them.
I guess the Christmas wrapping will get done later along with everything else.
TODAY'S BLESSING: This is hard today. I am blessed to know when I have had enough. And blessed with a caring husband who reminds me it's going to be okay.
This week started out great. I went to my check up at the Rheumatologist and she said I was doing good. She said if we were interested in more children we should do it soon while I'm doing well. They took blood to check my numbers which seemed pretty high. Out of the 7 tests she ran last time I was high in 6 to include kidney, heart, and lung function. So she referred me to get my heart and lungs checked out. The doctor said I can take any OTC drugs needed for pain and I could consume alcohol in moderation. The day after this good appointment the nurse called and said my liver was extremely inflamed and I need to go to a GI specialist. And I was told no more pain meds or alcohol!
So I here I sit on my weekend and my joints are all inflamed and I think I'm getting an ulcer in my mouth. My fingers, knuckles, wrists, elbows, knees and feet are all swollen and sore. My lympth nodes are swollen on my right side. Its incredibly frustrating getting sick when I don't know what I am doing to cause these flares. The Rheumatologist gave me a prescription for anti anxiety. I have had great sleep all week because the meds help me not stress for hours while laying in bed. I guess I pushed too hard at work. I guess I can not work extra hours to make up for the lack of leave I have. I guess I shouldn't care if my house is a mess and laundry hasn't been done in over a week. Glad I thought enough a head to take off my wedding bands since they would definitely have cut off the feeling to my fingers.
So unlike the rest of the young mom's out there who get to play and cuddle with their babies, I get to rest. They get to feed their babies without being in pain from tilting the bottle. They can give fun baths because kneeling next to the tub doesn't hurt them.
I guess the Christmas wrapping will get done later along with everything else.
TODAY'S BLESSING: This is hard today. I am blessed to know when I have had enough. And blessed with a caring husband who reminds me it's going to be okay.
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