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.
Monday, November 26, 2012
Plaquenil and Your Eyes
| What is
Plaquenil? Plaquenil (Hydroxychloroquine) is used to dampen inflammation in some forms of arthritis, especially rheumatoid arthritis and lupus. Plaquenil is usually used for long term disease control, rather than in the short term to control active bursts of inflammation. Plaquenil has important but uncommon side effects that may affect your eye. How does Plaquenil affect your eyes? The most important affect of Plaquenil on your eye is to damage the retina at the back of your eye. Fortunately, this is very uncommon and generally only occurs in patients on high doses or patients with bad kidney function. This sort of retinal damage may result in patchy loss of central vision or patchy loss of vision just close to the centre of your vision. There are a number of other much less important side effects of Plaquenil, including changes in the cornea and changes in the eyelids. To be at risk of eye problems from Plaquenil you need to be on quite a high dose. The dose that you can safely tolerate depends on your size. If you weigh less than 30kg, then you may run in to problems on just one tablet a day. If you weigh less than 60kg (around 9 ½ stone) then you may be at risk of eye problems on two tablets daily. What can I do to ensure my eyes are not affected? It is important to promptly report any changes in vision, especially any changes in your central vision whilst you are on Plaquenil. It is also useful to check your central and near central vision regularly. It is recommended that you check you vision on an Amsler chart weekly (see below). You do this by looking at the black dot in the centre with one eye at a time and noticing if there are any gaps or irregularities in the straight lines around the black dot. If there are any changes then you should tell your rheumatologist or your eye doctor promptly. The vast majority of patients on Plaquenil get absolutely no eye problems and you should not be unduly worried or concerned. If you have a good response in your arthritis to the Plaquenil then the benefits of a Plaquenil almost certainly outweigh the small risks to your eyes. So long as you are careful with your eyes, then there are no reasons that you should develop any problems in the long term. 
|
Sunday, November 25, 2012
Almost Done Shopping
So this weekend we went nuts and spent too much money especially since we need to save for a down payment on our new house we will be purchasing in the next few months. BUT we are almost done Christmas shopping. We only need gifts for our secret Santa's and we are done! It is a small Christmas but it made me really think and get creative.
For a few years Christmas was getting kind of boring. Don't get me wrong, I enjoyed spending time with family and friends but it was a lot of gifts and not enough fun. This year we have been celebrating for one week so far and it has been so much fun. Jackson makes everything better. I am very excited to take him to see Santa. Maybe next weekend. We were in Target today and saw an old man wearing a Santa hat with a real white beard (probably a Santa on the side). Jackson just looked at him and kept playing with his toy. SO, maybe this is an indication that he will not cry when on Santa's lap. Crossing my fingers.
Decorating is all done. I didn't do much this year. We bought a new pre-lit tree since our old tree took so long to put lights on and my wrists hurt too much to mess with that. I hope I can find someone who wants it, it is a really nice tree. This new tree is a little Charlie Brownish but its temporary. When we know what our new house looks like next year we can get one that fits better. The wreath is on the door and the stockings are on the mantel and that's all she wrote.
For a few years Christmas was getting kind of boring. Don't get me wrong, I enjoyed spending time with family and friends but it was a lot of gifts and not enough fun. This year we have been celebrating for one week so far and it has been so much fun. Jackson makes everything better. I am very excited to take him to see Santa. Maybe next weekend. We were in Target today and saw an old man wearing a Santa hat with a real white beard (probably a Santa on the side). Jackson just looked at him and kept playing with his toy. SO, maybe this is an indication that he will not cry when on Santa's lap. Crossing my fingers. Decorating is all done. I didn't do much this year. We bought a new pre-lit tree since our old tree took so long to put lights on and my wrists hurt too much to mess with that. I hope I can find someone who wants it, it is a really nice tree. This new tree is a little Charlie Brownish but its temporary. When we know what our new house looks like next year we can get one that fits better. The wreath is on the door and the stockings are on the mantel and that's all she wrote.
Thursday, November 22, 2012
So Much to Be Thankful For
Happy Thanksgiving,
This year, more than most, I have so much to be thankful for. I am glad to be alive! I know it sounds dramatic but I really am. For a while there I was pretty sure I might not be here. I am so grateful to wake up every morning, even if it is to the sounds of Jackson crying for food. I am so blessed with a wonderful baby boy. He is perfect and not in the "I am the mom so he is the best" kind of way. He really is the best. I couldn't make it without my partner, my best friend, my husband. He has made all of this worth it. With my two boys everything is complete.
I am grateful for my loving supportive family. My parents and siblings are strong for me when I cannot be strong for myself. They are encouraging and hopeful when I need it most. I cant wait to move home and be able to hug them and see their beautiful faces. I am also excited for them to meet Jackson (he has had some visitors but many haven't had the chance to see him yet). I miss my Pappy and I am said he never got to see Jackson. I know he is watching over us now and he is so proud.
I am eternally grateful of my coworkers and friends. Its those people who helped me not feel like a monster when I know I looked like one. They treated me like normal and that's all I could ask for. My friends who checked on me and comforted me.
It hasn't all been bad this year. As bad as it was, it was mostly great. Jackson was born. I got to spend my pregnancy sharing every experience with my great friend, Vanessa, who also was pregnant and due the same week! I couldn't have asked for a better person to share that experience with.
It sounds kind of corny but I really hope you embrace all that you have to be thankful for and not just today but everyday. No specific blessing for today since this whole post is about being thankful!
This year, more than most, I have so much to be thankful for. I am glad to be alive! I know it sounds dramatic but I really am. For a while there I was pretty sure I might not be here. I am so grateful to wake up every morning, even if it is to the sounds of Jackson crying for food. I am so blessed with a wonderful baby boy. He is perfect and not in the "I am the mom so he is the best" kind of way. He really is the best. I couldn't make it without my partner, my best friend, my husband. He has made all of this worth it. With my two boys everything is complete.
I am grateful for my loving supportive family. My parents and siblings are strong for me when I cannot be strong for myself. They are encouraging and hopeful when I need it most. I cant wait to move home and be able to hug them and see their beautiful faces. I am also excited for them to meet Jackson (he has had some visitors but many haven't had the chance to see him yet). I miss my Pappy and I am said he never got to see Jackson. I know he is watching over us now and he is so proud.
I am eternally grateful of my coworkers and friends. Its those people who helped me not feel like a monster when I know I looked like one. They treated me like normal and that's all I could ask for. My friends who checked on me and comforted me.
It hasn't all been bad this year. As bad as it was, it was mostly great. Jackson was born. I got to spend my pregnancy sharing every experience with my great friend, Vanessa, who also was pregnant and due the same week! I couldn't have asked for a better person to share that experience with.
It sounds kind of corny but I really hope you embrace all that you have to be thankful for and not just today but everyday. No specific blessing for today since this whole post is about being thankful!
Wednesday, November 21, 2012
Washington Post Article
I found this article on another Lupus blog I subscribe to. It is a very interesting article about a woman with Lupus who got an infection that wouldn't heal and how they eventually figured it out. She went through hell as many do with Lupus. This is a very scary reality for a lot of people and one of the things I fear the most. When a healthy person gets an infection, they can take meds and heal within 2 weeks most times. When people with weakened immune systems get an infection it can take forever to heal or, worse, it can be life threatening. So I try to stay away from "sick people" but that is so hard, especially when the "sick people" are my 7 month old son or my husband. Here is a clip from the article.
Medical Mystery
Today's Blessing: Having a clean house for tomorrow's festivities. Happy Thanksgiving Eve Everyone!
Shanmugam said she was struck by the paradoxical nature of Ayala’s case. Often,
she said, aggressive treatment of an underlying autoimmune disorder speeds
healing. “But her case was the opposite,” Shanmugam noted. “The more aggressive
people got with her lupus, the worse she got.”
Medical Mystery
Today's Blessing: Having a clean house for tomorrow's festivities. Happy Thanksgiving Eve Everyone!
Tuesday, November 20, 2012
I love my dermatologist
Today I had a follow up with my dermatologist. She said my skin is looking good. Its a little red in the cheeks but that is probably the result of healing from my flare. She said my skin biopsy is healing very well. The only complaint I had was my itchy scalp. I was given a sample spray for my scalp, can't wait to see if it helps! It's about time I go to a doctor who said I am doing well. I only have to see her once every six months unless I have a flare. In the event my Lupus acts up she is going to be the first person I see!
The dermatologist also said one of the positive things about my horrible relationship with the sun is my skin will be healthier; ie no wrinkles! Finally some silver lining.
Today's Blessing: My DVR. It is so full of wonderful shows I can't wait to watch. What did we do before DVRs? I remember missing shows or taping over a show, it was so disappointing.
The dermatologist also said one of the positive things about my horrible relationship with the sun is my skin will be healthier; ie no wrinkles! Finally some silver lining.
Today's Blessing: My DVR. It is so full of wonderful shows I can't wait to watch. What did we do before DVRs? I remember missing shows or taping over a show, it was so disappointing.
Monday, November 19, 2012
How to Add a Comment/Become a Follower
I wanted to help my readers out. Apparently it is a little confusing on how you can become a follower of Lupus & Sprout vs. how to comment.
Here is some guidance from blogger.
Who are Followers?
Here is some guidance from blogger.
Who are Followers?
Followers are people interested in your blog. They became a follower of your blog by either following your blog via your Following gadget or they followed your blog from their Reading List. When you click to become a follower you can use your GMail account among others. If you do not have an account you can sign up for one. Once you sign up to be a follower you will show up as a member. I think I only have one right now. You can also just add your email address to have my posts sent directly to you if you'd like. I am still learning but I cannot figure out how to find out who/how many people are email followers. BUT if you sign up to be a follower with your account I can see those (plus you can upload a picture as well).
Leaving a Comment:
If you would like to leave a comment, and I hope you do, you have to choose who you want to be displayed as. When you are finished typing your message hit publish. A window will pop up with those horrible scrambled numbers/letters and you will have to type the set into the box with a space. Then it should work.
The more interaction I get from my readers the better the blog will be. If you need help let me know.
Today's Blessing: The Internet. How did we live without it?
Leaving a Comment:
If you would like to leave a comment, and I hope you do, you have to choose who you want to be displayed as. When you are finished typing your message hit publish. A window will pop up with those horrible scrambled numbers/letters and you will have to type the set into the box with a space. Then it should work.
The more interaction I get from my readers the better the blog will be. If you need help let me know.
Today's Blessing: The Internet. How did we live without it?
Sunday, November 18, 2012
I Love Sundays
This might be my favorite day of the week. Sundays are super relaxing around here. This morning Jackson slept in until 7 and then we went on a walk around the block. I enjoy morning walks because it is still cool outside and no one else is out and about. Today we walked by the mailbox and around the block the long way. I was pretty tired when we got back but it felt good. So two days of walking (outlets yesterday) has got to be good for me. I made sure to use a lot of sunblock and covered up. Still getting used to by unhealthy relationship with the sun (thanks Lupus). On the plus side, I got a new hat at Ann Taylor; it's so cute.
Sundays are great days to catch up on house cleaning and laundry. I get a lot of satisfaction when my house is clean. I guess cleaning makes you feel good because you can see fast results and have control over the process. With Thanksgiving this week I wanted to make sure our house is at least presentable.
Wearing sweatpants and slippers all day. Everyone needs a day a week to do that! Plus, football means sitting back with the hubby eating some yummy snacks.
It doesn't get better than a lazy Sunday.
Today's Blessing: I forgot to add a blessing to my last post so I will give two today! First, having the ability to walk. Being able to move makes you feel good and its good for you. Second, finding a few pair of pants that actually fit for work. I have lost 50 lbs since I had Jackson in April (7 months ago). I think it is the best thing about getting Lupus.
Sundays are great days to catch up on house cleaning and laundry. I get a lot of satisfaction when my house is clean. I guess cleaning makes you feel good because you can see fast results and have control over the process. With Thanksgiving this week I wanted to make sure our house is at least presentable.
Wearing sweatpants and slippers all day. Everyone needs a day a week to do that! Plus, football means sitting back with the hubby eating some yummy snacks.
It doesn't get better than a lazy Sunday.
Today's Blessing: I forgot to add a blessing to my last post so I will give two today! First, having the ability to walk. Being able to move makes you feel good and its good for you. Second, finding a few pair of pants that actually fit for work. I have lost 50 lbs since I had Jackson in April (7 months ago). I think it is the best thing about getting Lupus.
Friday, November 16, 2012
Jury Duty, ugh
I received another jury duty summons yesterday in the mail. I got a summons in October right in the middle of my first Lupus flare. I was able to get out of it then due to illness but I didn't think I would get another so soon. I do not normally think jury duty is a bad thing. In fact, I would like to do it at some point. However, right now I do not think its a good idea. I am still trying to get used to my new meds and I am trying to see how I am affected by light. I am going to ask for an exception. If I can get them to excuse me until we move back to Maryland that would be great.
As for moving, there is a lot of planning involved so I am going to be pretty busy these next few months. On the 27th I am meeting with my Rheumy and then I should know what date works for the move. Hoping to get transferred to Johns Hopkins Lupus Center. I want to make sure we move in between appointments and I do not want to have to wait to meet my new doctor for too long. So not only will I be doing normal things like finding daycare, a pediatrician, family doctor and dentist, but I will also have to find a dermatologist, optamologist, rheumatologist, and I'm sure others.
Weekend plans include outlet shopping and yoga followed by Ravens football. So ready for some relaxing with my family and friends.
As for moving, there is a lot of planning involved so I am going to be pretty busy these next few months. On the 27th I am meeting with my Rheumy and then I should know what date works for the move. Hoping to get transferred to Johns Hopkins Lupus Center. I want to make sure we move in between appointments and I do not want to have to wait to meet my new doctor for too long. So not only will I be doing normal things like finding daycare, a pediatrician, family doctor and dentist, but I will also have to find a dermatologist, optamologist, rheumatologist, and I'm sure others.
Weekend plans include outlet shopping and yoga followed by Ravens football. So ready for some relaxing with my family and friends.
Wednesday, November 14, 2012
A Cruel Mystery
The Lupus Foundation of America started a new educational campaign for Lupus awareness called The Cruel Mystery. I am new to this disease and I admit I had heard of Lupus but I never cared enough to look into what Lupus actually is. Below is a link to the new campaign website and to lupus.org. There are a lot of super smart people out there trying to find a cure. Please take a few minutes to read about the research being done and ways you can help.
Lupus is a cruel mystery.
It’s one of the cruelest, most mysterious diseases on earth. Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.
There’s more to lupus than meets the eye; It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think, and strikes on a scale that the public does not realize.
The Lupus Foundation of America is embarking on a cross-country quest to solve the cruel mystery of lupus and end its devastating impact. We are going to communities across the nation to educate individuals with lupus, their families and their health care professionals, raise public awareness of lupus, and to urge Congress to increase support for lupus medical research. Join us in the fight to end lupus. Learn more about the “Help Us Solve the Cruel Mystery™ National Tour”.
I would love to attend the tour in Richmond, VA on 16 March 2013. Maybe I will be home in Maryland by then (more to come on the move from Texas to Maryland).
cruelmystery.org and What is the cruel mystery?
Today's Blessing: Lupus.org and all of those responsible for the website. I have learned so much from this site. I am glad to have a trustworthy place to get my Lupus information.
Lupus is a cruel mystery.
It’s one of the cruelest, most mysterious diseases on earth. Lupus strikes without warning, has unpredictable, sometimes fatal effects, lasts a lifetime, and has no known cause and no known cure.
There’s more to lupus than meets the eye; It is difficult to diagnose, hard to live with, and a challenge to treat. Lupus is hidden from view because people often times may not look sick. It is more pervasive than people think, and strikes on a scale that the public does not realize.
The Lupus Foundation of America is embarking on a cross-country quest to solve the cruel mystery of lupus and end its devastating impact. We are going to communities across the nation to educate individuals with lupus, their families and their health care professionals, raise public awareness of lupus, and to urge Congress to increase support for lupus medical research. Join us in the fight to end lupus. Learn more about the “Help Us Solve the Cruel Mystery™ National Tour”.
I would love to attend the tour in Richmond, VA on 16 March 2013. Maybe I will be home in Maryland by then (more to come on the move from Texas to Maryland).
cruelmystery.org and What is the cruel mystery?
Today's Blessing: Lupus.org and all of those responsible for the website. I have learned so much from this site. I am glad to have a trustworthy place to get my Lupus information.
Sunday, November 11, 2012
What a Week
Wow, it was a long hard week. Just as I am getting rest and recovering from last week I am getting ready to start a new week that will be just as long and hard. Thank God we have off on Monday so I can get an extra nap in.
Let me catch you up on some great news. Friday we took Jackson in for his check up to see how much longer he will be needing to wear his helmet. He is growing so fast that it looks like he will only need it for 6 more weeks. If he was a first time patient, they wouldn't even recommend the helmet now because his numbers were so good! I could tell his head wasn't as flat as it was but it was GREAT to have the doctor confirm it. Now that will be a wonderful Christmas gift.
Yesterday my husband and I went to our first Lupus support group and it was a good experience. There were about 10 people and one other guy whose wife was diagnosed with SLE a month ago. I really enjoyed listening to the ladies share stories about there Lupus. Some things I haven't experienced yet (hopefully never will) but a lot of the ladies had very similar issues that I have. We will definitely keep attending.
And we made it to the zoo. Jackson was more interested in the kids running around than all the new animals. He enjoyed the flamingos and alligators. It was nice to be out walking around and getting fresh air. We learned that Jackson loves the baby food in the squishy bags. It is much easier to use those than to have to carry food and a spoon.
Today's Blessing: Having my Mom here for the weekend. It was really nice having her here to help with Jackson. Too bad she is leaving tomorrow.
Let me catch you up on some great news. Friday we took Jackson in for his check up to see how much longer he will be needing to wear his helmet. He is growing so fast that it looks like he will only need it for 6 more weeks. If he was a first time patient, they wouldn't even recommend the helmet now because his numbers were so good! I could tell his head wasn't as flat as it was but it was GREAT to have the doctor confirm it. Now that will be a wonderful Christmas gift.
Yesterday my husband and I went to our first Lupus support group and it was a good experience. There were about 10 people and one other guy whose wife was diagnosed with SLE a month ago. I really enjoyed listening to the ladies share stories about there Lupus. Some things I haven't experienced yet (hopefully never will) but a lot of the ladies had very similar issues that I have. We will definitely keep attending.
And we made it to the zoo. Jackson was more interested in the kids running around than all the new animals. He enjoyed the flamingos and alligators. It was nice to be out walking around and getting fresh air. We learned that Jackson loves the baby food in the squishy bags. It is much easier to use those than to have to carry food and a spoon.
Today's Blessing: Having my Mom here for the weekend. It was really nice having her here to help with Jackson. Too bad she is leaving tomorrow.
Wednesday, November 7, 2012
Made it to Hump Day
I made it to Wednesday working full days. I am exhausted! I am busy catching up but I am also done with that. Today was spent on mandatory training, which might be why I am so tired... those are super draining.
I am lucky to have the job I do. While I was on sick leave they turned out the lights in my office as a reasonable accommodation for the lupus symptom of sensitivity to florescent lighting. Like most people, my workplace is covered in florescent lighting. Almost everywhere you go you have to deal with it. Before I returned to work I went to Macy's and the lighting bothered me so much I thought I was going to have a stroke. I got a headache, my eyes wouldn't stop blinking, vision blurred and I thought I was going to vomit. I'm thinking this happened because of the lights but who knows for sure.
The only thing bothering me in my office now is the computer screen. Not sure if its the brightness or the jumpy mouse but I have to figure that out. Maybe its the font size. Guess I know what I am doing tomorrow.
Today's Blessing: Having lunch with my husband and Jackson. It was great to see his little smiling face midway through my day. A little pick-me-up. I wish his daycare was closer so I could pop by more often.
I am lucky to have the job I do. While I was on sick leave they turned out the lights in my office as a reasonable accommodation for the lupus symptom of sensitivity to florescent lighting. Like most people, my workplace is covered in florescent lighting. Almost everywhere you go you have to deal with it. Before I returned to work I went to Macy's and the lighting bothered me so much I thought I was going to have a stroke. I got a headache, my eyes wouldn't stop blinking, vision blurred and I thought I was going to vomit. I'm thinking this happened because of the lights but who knows for sure.
The only thing bothering me in my office now is the computer screen. Not sure if its the brightness or the jumpy mouse but I have to figure that out. Maybe its the font size. Guess I know what I am doing tomorrow.
Today's Blessing: Having lunch with my husband and Jackson. It was great to see his little smiling face midway through my day. A little pick-me-up. I wish his daycare was closer so I could pop by more often.
Monday, November 5, 2012
Hand, Foot, and Mouth Disease..Ugh
Today was my first day back at work after being off for what seems like forever. It went well. I got tired around 130 but I persevered through it. I am ready for bed already and its only 630. I am glad to back in the office with people to talk to and something to take my mind off Lupus. Not that I don't enjoy spending my time talking to my husband and other family members.
Jackson stayed home today with his dad and they went to the doctor since he hasn't been getting better. He has Hand, Foot, Mouth disease. That sounds disgusting. It is apparently pretty common for kids to get this and he probably got it from daycare. I am glad to know what it is so we can start getting better. It is the worst feeling to see your baby so sick and not eating. I'm crossing my fingers I do not get this sickness, not what I need right now.
Today's Blessing: My coworkers. I am happy I have a great group of people to work with and who look out for me.
Jackson stayed home today with his dad and they went to the doctor since he hasn't been getting better. He has Hand, Foot, Mouth disease. That sounds disgusting. It is apparently pretty common for kids to get this and he probably got it from daycare. I am glad to know what it is so we can start getting better. It is the worst feeling to see your baby so sick and not eating. I'm crossing my fingers I do not get this sickness, not what I need right now.
Today's Blessing: My coworkers. I am happy I have a great group of people to work with and who look out for me.
Sunday, November 4, 2012
Sick Sproutlet
Well we made it to the family photo yesterday. Jackson had a fever (101.8) but the Tylenol took it down. He did great until the photographer put him on his belly but by then we were finished anyway. It is nice to already have my Christmas cards ordered, one less stressor.
I thought he was doing better but this morning the fever is back. So I am up early again today with a sick baby and the clocks fell back an hour. Maybe I will get a nap. I am lucky because he doesn't fuss too bad when he is sick, he mostly sleeps. I'm crossing my fingers he keeps eating and drinking because if not we will have to take him in for emergency care.
This weekend so far has been very relaxing. Just what I needed before returning to work tomorrow. Other than watching football I have to find something to wear to work tomorrow. Not sure what still fits since I lost so much weight from the Lupus flare. Definitely not going to get rid of any clothes until I see how the medication makes my body get bigger or smaller. I am excited to see my coworkers and get back to doing something other than sleeping. And, I bet tomorrow at work I will want to be home taking a nap.
What is everyone else doing today?
Today's Blessing: Health insurance. I got a statement of coverage in the mail and my last visit to the ER was completely covered. (EDIT: Got another statement and I owe $125. Not bad considering the total was well over $5,000! Still a blessing.)
I thought he was doing better but this morning the fever is back. So I am up early again today with a sick baby and the clocks fell back an hour. Maybe I will get a nap. I am lucky because he doesn't fuss too bad when he is sick, he mostly sleeps. I'm crossing my fingers he keeps eating and drinking because if not we will have to take him in for emergency care.
This weekend so far has been very relaxing. Just what I needed before returning to work tomorrow. Other than watching football I have to find something to wear to work tomorrow. Not sure what still fits since I lost so much weight from the Lupus flare. Definitely not going to get rid of any clothes until I see how the medication makes my body get bigger or smaller. I am excited to see my coworkers and get back to doing something other than sleeping. And, I bet tomorrow at work I will want to be home taking a nap.
What is everyone else doing today?
Today's Blessing: Health insurance. I got a statement of coverage in the mail and my last visit to the ER was completely covered. (EDIT: Got another statement and I owe $125. Not bad considering the total was well over $5,000! Still a blessing.)
Friday, November 2, 2012
Sick Day with Jackson
Happy Friday!
This morning Jackson threw up his formula right after I fed him. Not a little spit up but the whole 5 ounces at once. It scared me because his mouth was full of vomit and he didn't seem to know how to spit it out. I was afraid he would choke so I pulled him up and the vomit went all over his crib (doing laundry now). I had just dressed him too. So, on with a new outfit. Boy, babies go through a lot of clothes. I took him to daycare since I thought he was just rolling around too much and made himself sick.
Once we got to daycare he had a bowel movement and then an hour later they called me and said he did it again but more runny. He was covered in poo (another outfit change). So, here I am. At home with the baby. I would have been home today anyway since it's my last day off before I go back to work on Monday. I have been off for three weeks and, honestly, I am glad to have my last day with him. He seems fine now. And I hope he doesn't get worse because emergency care is pricey and crowded but don't kids always seem to get sick on the weekends?
I am crossing my fingers he is okay tomorrow since I scheduled a family picture session. I was hoping to go to the store today to get my husband and myself new shirts for the picture. If Jackson is feeling up to it, I guess I can still do that.
And, maybe a walk when the sun goes down.
Today's Blessing: Waiting only 10 minutes for early voting.
This morning Jackson threw up his formula right after I fed him. Not a little spit up but the whole 5 ounces at once. It scared me because his mouth was full of vomit and he didn't seem to know how to spit it out. I was afraid he would choke so I pulled him up and the vomit went all over his crib (doing laundry now). I had just dressed him too. So, on with a new outfit. Boy, babies go through a lot of clothes. I took him to daycare since I thought he was just rolling around too much and made himself sick.
Once we got to daycare he had a bowel movement and then an hour later they called me and said he did it again but more runny. He was covered in poo (another outfit change). So, here I am. At home with the baby. I would have been home today anyway since it's my last day off before I go back to work on Monday. I have been off for three weeks and, honestly, I am glad to have my last day with him. He seems fine now. And I hope he doesn't get worse because emergency care is pricey and crowded but don't kids always seem to get sick on the weekends?
I am crossing my fingers he is okay tomorrow since I scheduled a family picture session. I was hoping to go to the store today to get my husband and myself new shirts for the picture. If Jackson is feeling up to it, I guess I can still do that.
And, maybe a walk when the sun goes down.
Today's Blessing: Waiting only 10 minutes for early voting.
Thursday, November 1, 2012
Focusing on the Golf Balls
I must be depressing to my husband. He sent me the below link that a friend of his had posted on Facebook. I think I have heard something like this before but like most people you read it then move on and forget. This time I read it with a different outlook on life and I definitely think I need to focus more on the golf balls.
The golf balls are the important things: Our efforts for everlasting happiness, our spiritual, emotional, mental and physical health, our family, our partner, our children, our friends. Things that if everything else was lost and only they remained, our life would still be full.
The golf balls are the important things: Our efforts for everlasting happiness, our spiritual, emotional, mental and physical health, our family, our partner, our children, our friends. Things that if everything else was lost and only they remained, our life would still be full.
So, for my husband (and myself), I am going to think of something everyday that I am thankful for and that makes me happy (and it won't always be my little man).
Today's Blessing: No one ringing the doorbell after lights out on Halloween and not getting egged.
Wednesday, October 31, 2012
Why Can't Long Thick Hair Be a Symptom?
I wish the doctors would have said to me, "Stephanie, I am so sorry but one of the side effects of a Lupus flare-up is long beautiful thick healthy hair." Or, "You will have to eat cheesecake everyday to stay healthy and strong." It's annoying that most symptoms of Lupus are bad. The picture on the left is me a few days after Jackson was born. My hair was long and thick and wonderful. I expected it to thin a lot after the pregnancy was done but then it got a little extreme. Six months later on the right I was finally able to get it cut since the Lupus flare finally started getting better. I actually like the length now. It is super easy to care for. And, I like the dark blond color. I had to get rid of the highlights because I didn't want to sit in the beauty salon under the fluorescent lights for hours. Unfortunately, now my hair is very thin and falls out in clumps. I dread washing my hair because I know my hands will be covered in hair. My poor husband has to clean out the drains all the time. It makes me sad but they say after the flare-up is over my hair will stop falling out and grow back. I hope that starts soon or I am afraid I might be bald!
Tuesday, October 30, 2012
New Symptoms? TMI
Last night was rough for me. I was the only one up in the house. The baby was asleep and so was my husband; pretty sure I heard the dogs snoring too. I was up with stomach cramps. Now before you read on this might get TMI. I don't remember really what cramping feels like during that time of the month. Mostly because I didn't get them too bad to begin with. Then came Jackson. For the last 6 months since I really haven't had any cramps. I am trying Mirena so maybe that has helped (or hindered). Who knows. Anyway, these pains are in the middle of my stomach I think and they are fast shooting pains. They aren't really super painful but they are annoying and worrisome. I took some Tylenol and was able to fall asleep but it was very restless. I wont even mention the hemorrhoid I think I might have. I have never had one of those before but there is always a first time. I looked it up and saw that these are more possible problems from the Lupus. It just keeps getting better doesn't it? Sorry to gross you out!
I am waiting for the doctor's office to open to see if I can get in. Better safe than sorry. Plus, I am still waiting for the kidney results so I hope they came back.
Plus, I want to talk to my doctor about anxiety. It comes and goes but, oh boy, when I feel it, its horrible. That also keeps me up during the night. It takes me forever to fall asleep because my mind is going too fast. I think about everything, big or small, important or not... it is getting old.
We will see what they say.
*** Update****
The doctor told me to stop taking my Lupus meds for a week then easy back into them. Apparently the meds are very rough on my body. So far today feeling better but I had already taken my med this am. I'll give it a day or two and call back if it gets worse.
I am waiting for the doctor's office to open to see if I can get in. Better safe than sorry. Plus, I am still waiting for the kidney results so I hope they came back.
Plus, I want to talk to my doctor about anxiety. It comes and goes but, oh boy, when I feel it, its horrible. That also keeps me up during the night. It takes me forever to fall asleep because my mind is going too fast. I think about everything, big or small, important or not... it is getting old.
We will see what they say.
*** Update****
The doctor told me to stop taking my Lupus meds for a week then easy back into them. Apparently the meds are very rough on my body. So far today feeling better but I had already taken my med this am. I'll give it a day or two and call back if it gets worse.
Monday, October 29, 2012
Damn You Aerosmith!
I just heard this song on the radio. Normally I won't be posting twice in one day but I wanted to see the lyrics. This is for Jackson! It is so perfect for how I feel about him and it brings tears to my eyes. He is so precious and happy. I can't imagine life without him, or if I am honest, without me. My biggest fear isn't death, it's leaving my loved ones behind. (More on this later)
I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Where every moment spent with you is a moment I treasure
Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
Lying close to you feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes
And thank God we're together
I just want to stay with you in this moment forever
Forever and ever
I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
I don't want to miss one smile
I don't want to miss one kiss
I just want to be with you
Right here with you, just like this
I just want to hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time Yeah yeah yeah
I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
I Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
Don't want to close my eyes
I don't want to fall asleep
And I don't want to miss a thing
Watch you smile while you are sleeping
While you're far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Where every moment spent with you is a moment I treasure
Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
Lying close to you feeling your heart beating
And I'm wondering what you're dreaming
Wondering if it's me you're seeing
Then I kiss your eyes
And thank God we're together
I just want to stay with you in this moment forever
Forever and ever
I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
I don't want to miss one smile
I don't want to miss one kiss
I just want to be with you
Right here with you, just like this
I just want to hold you close
Feel your heart so close to mine
And just stay here in this moment
For all the rest of time Yeah yeah yeah
I don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
I Don't want to close my eyes
I don't want to fall asleep
Cause I'd miss you babe
And I don't want to miss a thing
Cause even when I dream of you
The sweetest dream will never do
I'd still miss you babe
And I don't want to miss a thing
Don't want to close my eyes
I don't want to fall asleep
And I don't want to miss a thing
What is Safe? Over the Counter Meds
Systemic lupus erythematosus
Introduction:
Systemic lupus erythematosus (SLE) is the most common form of lupus. Lupus is an autoimmune disease, meaning that the body' s immune system mistakenly attacks healthy organs and tissue. Lupus can affect any part of the body, causing inflammation and damage in joints, skin, kidneys, heart, lungs, blood vessels, or the brain. More than 90% of people with lupus have skin rashes, often triggered by exposure to the sun, and about half have kidney and lung problems. Because lupus affects the joints, it is considered a rheumatic (arthritis) disease.
Signs and Symptoms:
Lupus is often accompanied by the following signs and symptoms:
- Extreme fatigue
- Painful or swollen joints (arthritis)
- Muscle pain and stiffness
- Unexplained fever
- Skin rashes, including a characteristic "butterfly" rash over the nose and cheeks
- Kidney problems
- Hair loss
- Nausea, vomiting, abdominal pain
- Mouth and nose ulcers
- Headaches, migraine, seizures, stroke
- Anemia
- Depression
- Photosensitivity (sensitivity to sunlight)
Treatment Plan
There is no known cure for lupus. However, your team of health care providers can develop a treatment plan to prevent flare-ups, to treat them when they do occur, and to minimize complications.
Drug Therapies
Your health care provider may prescribe the following medications:
- Corticosteroids (such as prednisone), to quickly bring down inflammation. Side effects from long-term use include increased risk of osteoporosis.
- Nonsteroidal anti-inflammatory drugs (NSAIDs), to control pain, swelling, and fever. These drugs include ibuprofen (Advil, Motrin), aspirin, and naproxen (Aleve). Ask your doctor before taking any of these drugs over the counter.
- Drugs that suppress the immune system, to help keep the disease under control and prevent flares, for severe cases of lupus. These drugs include cyclophosphamide (Cytoxan), and azathioprine (Imuran), mycophenolate (CellCept), and methotrexate.
- Antimalarial drugs, to treat fatigue, joint pain, skin rashes, and inflammation of the lungs. One of these drugs, hydroxychloroquine (Plaquenil), also helps prevent flares.
Complementary and Alternative Therapies
A comprehensive treatment plan for lupus may include a range of complementary and alternative therapies.
Nutrition and Supplements
Eating a healthy diet with plenty of fruits, vegetables, and whole grains is important for anyone with a chronic disease. People with lupus may also benefit from the following strategies:
- Eat more antioxidant-rich foods (such as green, leafy vegetables) and fruits (such as blueberries, pomegranates, and cherries).
- Avoid refined foods, such as white breads, pastas, and sugar.
- Eat fewer red meats and more lean meats, cold-water fish, or beans for protein.
- Use healthy cooking oils, such as olive oil or vegetable oil.
- Avoid coffee and other stimulants, alcohol, and tobacco.
- Drink plenty of fluids.
- Exercise moderately at least 30 minutes daily, 5 days a week.
The following supplements may also help:
- Flaxseed (30 g per day) contains omega-3 fatty acids and alpha-linolenic acid, which may help decrease inflammation. One preliminary study suggested that people with lupus who took flaxseed had better kidney function -- important because kidney disease (lupus nephritis) is a major complication of lupus.
- Fish oil, which also contains omega-3 fatty acids, may help decrease inflammation. Although evidence is mixed about taking a fish oil supplement, doctors do suggest that people with lupus eat more fish. Cold-water fish, such as salmon or halibut, are good sources. Talk to your doctor before taking a fish oil supplement if you also take anticoagulants (blood-thinners), such as warfarin (Coumadin). Eating fish doesn' t cause the same risk.
- Dehydroepiandrosterone (DHEA), start at 5 mg three times a day and work up to 100 - 200 mg per day for 7 - 12 months. Do not take DHEA without your doctor' s supervision. DHEA is a precursor to the hormones estrogen and testosterone in the body, and several clinical trials show that it may help improve symptoms of lupus. However, side effects -- including acne, increased facial hair, and excessive sweating -- were common. DHEA may also lower HDL (good) cholesterol, which could contribute to heart disease. Because of DHEA' s hormone-like effects, people with a history or higher risk of breast, uterine, ovarian, or prostate cancer should not take DHEA.
- Calcium and vitamin D supplement, 1 - 2 tablets daily if taking corticosteroids. Corticosteroids can raise the risk of osteoporosis, and calcium and vitamin D can help keep bones strong.
- Methylsulfonylmethane (MSM), 3,000 mg two times per day, may help prevent joint and connective tissue breakdown.
Saturday, October 27, 2012
It's Dracula, No Just Momista
 |
| Happy Halloween at Sea World San Antonio |
Today I was outside walking for 2 hours! That's pretty impressive considering I have been pretty much in the house for 2 months (except running some errands here and there). It felt great to get out in the fresh cool fall air. I remembered to use my sunblock but I also realized I will probably smell like sunblock for the rest of my life. Maybe they could make a sunblock that smells like something other than what it is. Michael Kors sunblock would be wonderful.
I was pretty worried about the sun but as you can see, I sported a nice hat. I worry that my fear of the sun will turn me into a vampire lady never wanting to leave the house, waiting for the sun to fall so I can go outside and not worry about a flare up. I was going to call this post "turning into a lady of the night" but realized that's probably not a good idea. Definately not what I am going for.
Time to cap off the night with a little American Horror Story (my DVR is going to explode soon if we don't get some shows watched). Boo!
Friday, October 26, 2012
How I Found Out
This is my first post on my new blog. I am testing it all out but wanted to start with my story with Lupus. It sounded like a topic I knew I could share and have shared many times so this should be easy, right?
In August 2012, I was feeling tired. I got a nice rash/hives on my head in my hairline. Then it spread to my ears. I thought it would go away but it didn't, it got worse. I went to a med clinic here in San Antonio (yes, they are real doctors) and I was diagnosed with SHINGLES!!! Ewww, I felt dirty. I was given meds to help with the itchy rash and they started to go away but then about a week later I started getting fever blisters on my bottom lip. I had never had fever blisters before but I figured it makes sense since I had the shingles. I made a trip back to the med clinic because I couldn't eat and the blisters were not going away.
In September 2012, the doctor at the med clinic gave me penicillin for the fever blisters and they went away BUT my whole body broke out in a itchy rash. My arms and legs were so red and itchy and nothing would help. I went back to the med clinic and was told I had a drug reaction to penicillin because I was allergic (I had never been allergic to anything in my life). The doctor said it will go away on its own (took 2 weeks).
I thought I was feeling better, just a little cold and ear ache but nothing I haven't dealt with before. Work offered the flu shot and I got it like I do every year, WORST mistake and BEST blessing ever. Most people get the shot and a sniffle and move on, I couldn't move on. In fact, I am still fighting the flu. Thanks to the flu shot I went back to the doctor one more time. By then I was starting to get a nice little rash on my cheeks. He said I needed to go to the dermatologist.
After a month or so of missing so much work, not being able to lift my baby because I was in so much pain I was off to the dermatologist (well the best PA I could find). It is hard to be a new patient when you need to be seen right away, many places couldn't see me until FEB! REALLY? One look at me and she thought Lupus. I guess it was more obvious than I thought. She ordered lots of tests through blood work and urine. I was given creams for my face which helped clear it up in a week.
The PA called me on a Thurs to give me the results. I had lupus and I needed to go to the rheumatologist soon.
Here are two pictures I took of the rash:
This one is good so you can see I was healing. The rash on my cheeks peeled off. Man I was so swollen!
Here is another of my swollen face. I dont even know if this was the beginning or end of the rash!
So that's my story for now. My wrist hurts from what I have typed before. I think its the rain.
In August 2012, I was feeling tired. I got a nice rash/hives on my head in my hairline. Then it spread to my ears. I thought it would go away but it didn't, it got worse. I went to a med clinic here in San Antonio (yes, they are real doctors) and I was diagnosed with SHINGLES!!! Ewww, I felt dirty. I was given meds to help with the itchy rash and they started to go away but then about a week later I started getting fever blisters on my bottom lip. I had never had fever blisters before but I figured it makes sense since I had the shingles. I made a trip back to the med clinic because I couldn't eat and the blisters were not going away.
In September 2012, the doctor at the med clinic gave me penicillin for the fever blisters and they went away BUT my whole body broke out in a itchy rash. My arms and legs were so red and itchy and nothing would help. I went back to the med clinic and was told I had a drug reaction to penicillin because I was allergic (I had never been allergic to anything in my life). The doctor said it will go away on its own (took 2 weeks).
I thought I was feeling better, just a little cold and ear ache but nothing I haven't dealt with before. Work offered the flu shot and I got it like I do every year, WORST mistake and BEST blessing ever. Most people get the shot and a sniffle and move on, I couldn't move on. In fact, I am still fighting the flu. Thanks to the flu shot I went back to the doctor one more time. By then I was starting to get a nice little rash on my cheeks. He said I needed to go to the dermatologist.
After a month or so of missing so much work, not being able to lift my baby because I was in so much pain I was off to the dermatologist (well the best PA I could find). It is hard to be a new patient when you need to be seen right away, many places couldn't see me until FEB! REALLY? One look at me and she thought Lupus. I guess it was more obvious than I thought. She ordered lots of tests through blood work and urine. I was given creams for my face which helped clear it up in a week.
The PA called me on a Thurs to give me the results. I had lupus and I needed to go to the rheumatologist soon.
Here are two pictures I took of the rash:
This one is good so you can see I was healing. The rash on my cheeks peeled off. Man I was so swollen!
Subscribe to:
Comments (Atom)