Steph's Support Squad Website
I have started a team for the DC Walk to End Lupus Now in the end of April. My goal is to raise $500 for the team and to get 15 people to walk with me. We are already on a great start!
I would appreciate ANY help possible. Maybe you would like to walk with us, or maybe you can donate (anything would be great). The donations are tax deductible. Or maybe you can just share the link through social networking sites or email. Even sharing awareness would help a lot. I know times are tough so please do not put yourself out. I am very grateful for all that everyone has done for me already.
Today's Blessing: Getting admin leave from work to stay home for the packing company to come estimate boxes needed for our move.
Thursday, January 31, 2013
Friday, January 25, 2013
Dedicated to My Brother
The other night I posted and I completely forgot to mention the awesome time we had last weekend when my younger brother and his girlfriend came to visit us. It is hard for me to remember what I want to say when I write these but be assured my brother called me out on it the following day. They were here for a long weekend to help out and visit Jackson.
We went downtown San Antonio to the Riverwalk and Alamo. I am so glad I was able to take Jackson before we move and we got a cute picture in front of the Alamo. Of course, Jackson didn't seem to be interested in anything but watching the ducks and pigeons. We drove out to the "Cowboy Capital" Bandera and watched horses on main street. We went shopping and rented movies. We went to yummy restaurants and watched the Ravens beat New England. It was wonderful and I miss them being here to help out.
They were also life savers because they flew my cat back to Maryland. It is heart breaking to have to give up a pet not because you want to but need to for medical reasons. I am so thankful he is in a place where he is loved and cared for. Thanks Mom!
Today's Blessing: I had a strawberry margarita and it was awesome!
We went downtown San Antonio to the Riverwalk and Alamo. I am so glad I was able to take Jackson before we move and we got a cute picture in front of the Alamo. Of course, Jackson didn't seem to be interested in anything but watching the ducks and pigeons. We drove out to the "Cowboy Capital" Bandera and watched horses on main street. We went shopping and rented movies. We went to yummy restaurants and watched the Ravens beat New England. It was wonderful and I miss them being here to help out.
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| Special Visitors |
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| Jackson's First Alamo Visit |
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| Playing with Uncle Rob |
They were also life savers because they flew my cat back to Maryland. It is heart breaking to have to give up a pet not because you want to but need to for medical reasons. I am so thankful he is in a place where he is loved and cared for. Thanks Mom!
Today's Blessing: I had a strawberry margarita and it was awesome!
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| Doc's Last Day in Texas
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Wednesday, January 23, 2013
Never Moving Again
Hopefully I can take a small break from Lupus talk. The cardiologist said my heart is good to go. The only thing I am left waiting on is the results from my pulmonary function tests from last Monday.
Today was very stressful as we are preparing to respond to the sellers about fixes needed on the house before we go to settlement. I am sure they will not fix everything but they need to fix the big things. For example, the skylights need to be replaced, electrical work, chimney work.. more importantly, roof work and landscaping because water gathers near the house. It is stressful because the house is at the top of our budget. The decision to be made is if they do not fix these things do we back out of the contract and find something else? We move on 15 Feb and will need to move somewhere. I will be so glad when all of this is over.
Jackson is 9 months old. I feel like a horrible mom because I totally missed his 8 month pictures. I was a little busy around Christmas with all of the hospital visits. Today we tried to take his 9 month photos and it was crazy! He is moving around so much they almost all came out blurry. His sticker would not stay on his shirt. I gave up and this is what we got:
Today was very stressful as we are preparing to respond to the sellers about fixes needed on the house before we go to settlement. I am sure they will not fix everything but they need to fix the big things. For example, the skylights need to be replaced, electrical work, chimney work.. more importantly, roof work and landscaping because water gathers near the house. It is stressful because the house is at the top of our budget. The decision to be made is if they do not fix these things do we back out of the contract and find something else? We move on 15 Feb and will need to move somewhere. I will be so glad when all of this is over.
Jackson is 9 months old. I feel like a horrible mom because I totally missed his 8 month pictures. I was a little busy around Christmas with all of the hospital visits. Today we tried to take his 9 month photos and it was crazy! He is moving around so much they almost all came out blurry. His sticker would not stay on his shirt. I gave up and this is what we got:
Today's Blessing: Being one day closer to being back in Maryland with our families
Saturday, January 12, 2013
I'm Back, Finally
We just got back from our house hunting trip in Baltimore. I would have sworn we would have found something during the first week but online house hunting is deceiving. We looked at over 30 houses and most were crap! They needed so much work that I just can't afford to do nor do I have to energy to do it. Don't you know it came down to the wire with two houses we put offers in on and the very last day we finally came to an agreement and accepted one of the counters. The inspection is on Monday, too bad we couldn't be there for that. I pray everything goes well and we can settle on Feb 19th. It was a very hard decision. My hubby and I didn't agree on which house we wanted. I knew we needed a rancher but he fell in love with the house with a huge yard and great neighborhood. In the end, we did what was best and went with the rancher... no more steps for us.
Of course, things can't always go as planned. When we arrived at the airport and got everything into the car it was acting weird. Very jittery and then the engine light started flashing at us. We had to call a friend for a ride and AAA to tow the car. Thankfully, it was early enough the service center was open. They are looking into it now. Hope its not too expensive since we need all of our money for the new house!
I think the stress and lack of sleep (Baby Jackson could not get into a routine and woke up every day between 1230-330) I was flaring the whole time! My head was pounding and my joints hurt so bad. I couldn't get used to sleeping on the hotel bed. Thank GOD I am back in my bed.
I had my first appointment with Dr. Petri at the Lupus Center at Johns Hopkins. That outpatient center is massive. The people were all so nice and on time! I didn't learn much new but I did have 20 viles of blood taken, two were for research that I donated. Apparently, 5 of the top research companies in the US rely solely on Dr. Petri's patients for blood samples to help Lupus so of course I gave some. What is the difference between 18 and 20 viles anyway. The results are trickling back in but nothing new or surprising yet. My next appointment is in early April. What a relief.
This week is going to be busy, as they all will be until we move to Maryland next month. I have my pulmonary specialist, follow ups with the liver doctor and a vet appointment. AND my brother is flying in on Thurs night. Oh boy I hope Jackson gets back on a routine and that we all get some sleep.
Today's Blessing: Being home
Of course, things can't always go as planned. When we arrived at the airport and got everything into the car it was acting weird. Very jittery and then the engine light started flashing at us. We had to call a friend for a ride and AAA to tow the car. Thankfully, it was early enough the service center was open. They are looking into it now. Hope its not too expensive since we need all of our money for the new house!
I think the stress and lack of sleep (Baby Jackson could not get into a routine and woke up every day between 1230-330) I was flaring the whole time! My head was pounding and my joints hurt so bad. I couldn't get used to sleeping on the hotel bed. Thank GOD I am back in my bed.
I had my first appointment with Dr. Petri at the Lupus Center at Johns Hopkins. That outpatient center is massive. The people were all so nice and on time! I didn't learn much new but I did have 20 viles of blood taken, two were for research that I donated. Apparently, 5 of the top research companies in the US rely solely on Dr. Petri's patients for blood samples to help Lupus so of course I gave some. What is the difference between 18 and 20 viles anyway. The results are trickling back in but nothing new or surprising yet. My next appointment is in early April. What a relief.
This week is going to be busy, as they all will be until we move to Maryland next month. I have my pulmonary specialist, follow ups with the liver doctor and a vet appointment. AND my brother is flying in on Thurs night. Oh boy I hope Jackson gets back on a routine and that we all get some sleep.
Today's Blessing: Being home
Tuesday, January 1, 2013
A Healthy Heart and Liver
Last Friday I went in for my cardiac cath. I was nervous like I always am when I have to go in for a procedure and it was without reason. The whole procedure took less than an hour. It took longer to prep. I was the first appointment but an ICU case had to kick me back by 20 minutes. My doctor went in through the artery in my groin (awesome because part of the prep is shaving... yes, its embarrassing but I was prepared for that). They gave me some meds to calm me and it must have worked because the whole thing was over before I noticed. I watched the screens and talked with the techs. There were about 8 people in the room not including myself and the doctor so needlesstosay I have to add about 11 people to the list of who has seen me naked!
The worst part of the whole thing is laying flat on your back for so long. The funniest part was taking my walk around the recovery room with the nurse and seeing about 5 rooms with old men watching me. I guess I was the only one to keep my curtain pulled... they acted like it was a social gathering. So, yet again, I am the youngest person at my appointment.
The doctor also ordered my Echo and it turns out I do have a small whole in my heart. Apparently a small portion of the population has a whole that doesn't close up after birth. She also said the pressure between my heart and lungs is 20 (normal is 15-25) so I am good. Wish the first Echo didn't say it was 50! So, I should be good to wait for the pulmonary specialist in a few weeks. Still doesn't explain the pressure in my chest.
My liver doctor called yesterday too. She says I have a fatty liver and all I can do is loose weight. I will have to start eating better and working out I guess but maybe my liver hasn't caught up in the fact I just lost a ton of weight! She said she was concerned about a possible autoimmune hep but that I do not have that. Still doesn't explain why my stomach always feels full.
Today's Blessing: My coworker who is watching my pup and our dear friend who is watching my cat while we go find a house! Very blessed with great friends!
The worst part of the whole thing is laying flat on your back for so long. The funniest part was taking my walk around the recovery room with the nurse and seeing about 5 rooms with old men watching me. I guess I was the only one to keep my curtain pulled... they acted like it was a social gathering. So, yet again, I am the youngest person at my appointment.
The doctor also ordered my Echo and it turns out I do have a small whole in my heart. Apparently a small portion of the population has a whole that doesn't close up after birth. She also said the pressure between my heart and lungs is 20 (normal is 15-25) so I am good. Wish the first Echo didn't say it was 50! So, I should be good to wait for the pulmonary specialist in a few weeks. Still doesn't explain the pressure in my chest.
My liver doctor called yesterday too. She says I have a fatty liver and all I can do is loose weight. I will have to start eating better and working out I guess but maybe my liver hasn't caught up in the fact I just lost a ton of weight! She said she was concerned about a possible autoimmune hep but that I do not have that. Still doesn't explain why my stomach always feels full.
Today's Blessing: My coworker who is watching my pup and our dear friend who is watching my cat while we go find a house! Very blessed with great friends!
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