I know I am slow getting this posted because Ryan went to the doctor last Wednesday in Birmingham for his 3 month checkup. I have to tell you that the nurse who assists his doctor is a total idiot. She never returns his calls and trying to get a prescription from her is next to impossible. He went to his local Doctor here the week before and she wanted him to have a CT scan of the chest and abdomen because she felt enlarged lymphnodes in the abdomen. They couldn't get the scan done in time before his doctor appt in B'ham. However, Ryan called the nurse in B'ham to have her change the CT scan from just the chest to include both. But believe it or not she never called him back to confirm. His doctor down here had to make sure this was done properly how wrong is that.
Anyway that is all beside the point he had the complete CT scan and breathing test to make sure the Sarc had not entered his lungs. They also did blood work, but we have to assume there is nothing to be alarmed over since the idiot nurse has not called us. Well let's just hope it's not life threatening or anything because we may find out to late since she can't do her job. After the CT scan the Radiologist said the granulomas had enlarged, but the doctor said they had not. So who do you believe? The doctor has decided they are the same size and are no longer growing after coming off Prednisone, he has also decided not to put him on Methotrexate which is a great thing since we want to have kids. The doctor also felt he was showing signs of going into remission. He doesn't want to see him again for 6 months and at that time if they haven't enlarged anymore he will consider that remission.... Okay let me get this right remission in his case may mean that they may still be there, but not bigger? It doesn't mean that they will have disappeared? Apparently not remission for him would mean that they are not bigger and they have not moved nor multiplied. But they can remain the same size they are forever!!!! What???? So this may mean he will be in pain forever, well let's hope not. I guess we will have to wait and see in the meantime he continues to take pain medication, but nothing to reduce the size of the granulomas, which I don't think there is anything for that just yet.
Thursday, June 12, 2008
Wednesday, June 4, 2008
Anniversary
I have decided it is time to inform you of our not so wonderful 1st year anniversary trip. Yes we have been married for one year and we had this brilliant plan to go camping, rafting, and hiking. Our Anniversary was April 28, but we couldn't make our trip until May 11 because I had to finish out the Spring semester at school. We changed our plans multiple times as to where we were going to go. First we were going to Williamsburg, VA and camp out in North Carolina on the way. But then we came to our senses and decided we didn't want to spend 16 hours driving. We thought about going on a cruise, but decided spending our precious time with so many annoying people would spoil our fun. So we decided to go to Helen, GA this little dot of a town in North Georgia, we went there on recommendations from my cousin who went there on her Honeymoon and said what a great time it was. Well I don't know what she was doing on her Honeymoon, but I definitely did not see the fun in Helen.
First of all it is a Little German town were all the buildings look like an Alpine town with a couple of German restaurants (which were outrageously expensive I might add). The town looked really run down and most of the shops were closed while we were there. I thought it would be something like Gatlinburg, TN, with all the shops and restaurants in a row, but it was totally boring. But that wasn't the worst of it when we got there we found the campground and set up our tent. Then we decided to peruse the town, not much going on it was a Sunday and kinda chilly and of course we had to pay for parking in this stupid rinky dink town even to eat. We stopped and ate at this pizza place, we ate out on the patio by the water, and I must say it was pretty good for pizza a slice was as big as my head, as much as we tried we could not finish the whole thing. Anyway all the sudden the sky gets really dark and very windy, so we are freezing our butts off trying to eat (we are in shorts). All we can keep thinking is dang I hope it doesn't storm because we are staying in a tent. Then the waitress comes over and says be careful its going to get really bad tonight, might even be tornadoes. AGGHH!! Tornadoes you say! What do we do now do we risk it or get a hotel or leave. Well guess what! That's right we stayed! In the TENT!
I must say in hind sight that was a crazy thing to do. We get back to the site and take our showers no we did not really rough it on this trip, we had hot running water and flushing toilets and yes even mirrors. So as we are showering the wind is howling like crazy, trees are blowing and cracking, because you do know we are in the middle of the woods right. After showering we get back to the tent and it is still blowing like crazy we leave the sides open so that maybe we could see if a tree was coming at us. Well then darkness came and we could no longer see out, but man could we hear it. The wind was so loud and strong it sounded like waves crashing on the ocean. Anyway we didn't sleep a wink the ceiling of the tent keep folding in on us and we just knew all those tree branch crackings were going to fall on our head. I think we fell asleep around 5am for a couple of hours obviously surviving the night and freezing cold I might add, the temp dropped dramatically it was like 50 degrees in MAY!! in GEORGIA!!
At that time we decided to go hiking and went to the trail head. We where on the trail for about 2 hours and when we came back Lo and Behold our dang car had been smashed.
And wouldn't you know it no one was around and of course the douche bags did not leave a note. So now our already sucky vacation just got worse. The back end looked like someone had backed into, it broke my spoiler and crunched the trunk. Even though I wanted to go home and get it taken care of Ryan talked me into "letting it NOT ruin our already crappy trip" ha ha fat chance. Anyway we carried on, we did more hiking and had to go back to the rinky dink town to eat so we ate at a Wendy's no less. We had planned on rafting on the Chattoga the next morning, but they weren't running any trips, so we decided to drive to Cherokee NC and raft the Nantahala. It was about an hour away, but I must say we had a really good time, the water was so freaken cold though, we had wetsuits, wet boots, and water spray jackets on but still froze our butts off.
Anyway after that we shopped around and eventually made it back to our campsite on complete BACK ROADS.......... thanks stupid GPS, well at least we got there... 2 1/2 hours later. We had to eat at the Wendy's again because the other restaurants were closed during the week or just didn't look good. So much for it being the start of their peak season. Why didn't we cook out you say? Because it was still windy and there was a fire ban. I almost forgot to tell you about the annoying campers we had next to us when we got back from dinner. We had had the first 2 nights all to ourselves then a huge RV came with like 10 kids that kept running around screaming like crazy. Anyway we decided to cut our trip a day short and went home. This of course was no suprise to my family, because it seems I always cut my trips short. What can I say I miss my dogs and my own bed. We had planned on going to Destin that weekend, but wouldn't you know it, it forecasted rain so we didn't go and rain it did. Anyway on the way home we stopped at Callaway Gardens outside of Atlanta, that was pretty nice, we will probably take Haley there sometime this summer. They also have a drive through Safari park that I want to take her to.
So I had to take my car to the body shop when we got home and explain to the insurance, that no we didn't get a police report because the Jerks didn't stick around to be reported they smacked us and left. Jerks!!! Anyway so the deductible had to come out of our pocket and the body shop had my car for 3 weeks I just got it back. And I think I have finally recovered from the vacation from Hell!! I guess in all reality it could have been worse............
First of all it is a Little German town were all the buildings look like an Alpine town with a couple of German restaurants (which were outrageously expensive I might add). The town looked really run down and most of the shops were closed while we were there. I thought it would be something like Gatlinburg, TN, with all the shops and restaurants in a row, but it was totally boring. But that wasn't the worst of it when we got there we found the campground and set up our tent. Then we decided to peruse the town, not much going on it was a Sunday and kinda chilly and of course we had to pay for parking in this stupid rinky dink town even to eat. We stopped and ate at this pizza place, we ate out on the patio by the water, and I must say it was pretty good for pizza a slice was as big as my head, as much as we tried we could not finish the whole thing. Anyway all the sudden the sky gets really dark and very windy, so we are freezing our butts off trying to eat (we are in shorts). All we can keep thinking is dang I hope it doesn't storm because we are staying in a tent. Then the waitress comes over and says be careful its going to get really bad tonight, might even be tornadoes. AGGHH!! Tornadoes you say! What do we do now do we risk it or get a hotel or leave. Well guess what! That's right we stayed! In the TENT!
I must say in hind sight that was a crazy thing to do. We get back to the site and take our showers no we did not really rough it on this trip, we had hot running water and flushing toilets and yes even mirrors. So as we are showering the wind is howling like crazy, trees are blowing and cracking, because you do know we are in the middle of the woods right. After showering we get back to the tent and it is still blowing like crazy we leave the sides open so that maybe we could see if a tree was coming at us. Well then darkness came and we could no longer see out, but man could we hear it. The wind was so loud and strong it sounded like waves crashing on the ocean. Anyway we didn't sleep a wink the ceiling of the tent keep folding in on us and we just knew all those tree branch crackings were going to fall on our head. I think we fell asleep around 5am for a couple of hours obviously surviving the night and freezing cold I might add, the temp dropped dramatically it was like 50 degrees in MAY!! in GEORGIA!!
At that time we decided to go hiking and went to the trail head. We where on the trail for about 2 hours and when we came back Lo and Behold our dang car had been smashed.
And wouldn't you know it no one was around and of course the douche bags did not leave a note. So now our already sucky vacation just got worse. The back end looked like someone had backed into, it broke my spoiler and crunched the trunk. Even though I wanted to go home and get it taken care of Ryan talked me into "letting it NOT ruin our already crappy trip" ha ha fat chance. Anyway we carried on, we did more hiking and had to go back to the rinky dink town to eat so we ate at a Wendy's no less. We had planned on rafting on the Chattoga the next morning, but they weren't running any trips, so we decided to drive to Cherokee NC and raft the Nantahala. It was about an hour away, but I must say we had a really good time, the water was so freaken cold though, we had wetsuits, wet boots, and water spray jackets on but still froze our butts off.
Anyway after that we shopped around and eventually made it back to our campsite on complete BACK ROADS.......... thanks stupid GPS, well at least we got there... 2 1/2 hours later. We had to eat at the Wendy's again because the other restaurants were closed during the week or just didn't look good. So much for it being the start of their peak season. Why didn't we cook out you say? Because it was still windy and there was a fire ban. I almost forgot to tell you about the annoying campers we had next to us when we got back from dinner. We had had the first 2 nights all to ourselves then a huge RV came with like 10 kids that kept running around screaming like crazy. Anyway we decided to cut our trip a day short and went home. This of course was no suprise to my family, because it seems I always cut my trips short. What can I say I miss my dogs and my own bed. We had planned on going to Destin that weekend, but wouldn't you know it, it forecasted rain so we didn't go and rain it did. Anyway on the way home we stopped at Callaway Gardens outside of Atlanta, that was pretty nice, we will probably take Haley there sometime this summer. They also have a drive through Safari park that I want to take her to.
So I had to take my car to the body shop when we got home and explain to the insurance, that no we didn't get a police report because the Jerks didn't stick around to be reported they smacked us and left. Jerks!!! Anyway so the deductible had to come out of our pocket and the body shop had my car for 3 weeks I just got it back. And I think I have finally recovered from the vacation from Hell!! I guess in all reality it could have been worse............
AAGGHHH!!!!!!!!!
WHY WOMEN WHY? Why is it that when ever I go into a public restroom and go into my stall. In comes a women and she enters the stall right next to me. Why is this a problem you ask? Because there are 5 more empty stalls why do you have to pick the one right next to me. Drives me crazy!!!!!!
Sunday, May 25, 2008
Sarc
Well Ryan says he feels 2 new lumps in his lower abdomen. He felt the ones around his heart where getting smaller because he didn't feel them so much anymore. The 2 new ones are causing him a great deal of pain. He goes to the doctor next month to have another CT scan, I guess he will have to ask them to view them as well. He is afraid he is getting lymphoma, he's been very tired and having night sweats lately. Since they took him off Predisone they want to discuss putting him on Methotrexate this drug is a type of chemo. However, it says under no circumstances should you get pregnant or impregnate someone while on this drug. This poses a problem for us since we are currently trying to get pregnant. But I am beginning to feel he should go on this drug and we will just have to wait a while. It would be nice if we conceived this month, but I won't know for a couple of more weeks.
We went to a different church today, his ex-wife invited us because they where doing a healing service. I have always been very skeptical of those TV evangelist that "heal all in an instance". But this was very different, I must say it was a very moving service and I know the power of prayer can help. I know some of my friends would not believe me when I say this because I have always been a little iffy about religion. But I am beginning to see that things do happen, and everything happens for a reason at the right time. So please keep Ryan in your thoughts and prayers during this difficult time.
We went to a different church today, his ex-wife invited us because they where doing a healing service. I have always been very skeptical of those TV evangelist that "heal all in an instance". But this was very different, I must say it was a very moving service and I know the power of prayer can help. I know some of my friends would not believe me when I say this because I have always been a little iffy about religion. But I am beginning to see that things do happen, and everything happens for a reason at the right time. So please keep Ryan in your thoughts and prayers during this difficult time.
Saturday, May 24, 2008
I don’t really know what possessed me to start a blog, but I have been reading a blog that has inspired me to start one. Mainly I just want to talk about my day to day life and also in the process help someone that may need it. A little about me I am 30 years old, working full time and going back to school. I was recently working 2 jobs and going to school but was able to finish the 2nd job (waiting tables) last month. I’m beginning to wish I started this blog months ago so I could complain about how much I hate waiting tables and the unbelievably ridiculous people I had to wait on. But that is a whole other story. Anyway I have been married for one year to a very special person. We have 3 dogs and his little girl. After high school I went to college, but didn’t know what I wanted to do with my life. I met someone and we eventually both quit school and got married. Not the best move, I look back now and wish I had finished school then, but I find school to be much easier now that I am actually focused on finishing. My husband and I where married 7 years but it just did not work out, which the reasons of that I will keep private there is no reason drudging up the past. The divorce was a very painful and depressing time of my life and I have no reason to relive it.
A few months after my divorce my future husband (Ryan) found me on MySpace which I truly believe happened for a reason and came about when I really needed someone. I know “you married someone you met on the internet”. Well not exactly we had actually met in high school my sophomore year in 1992. We had actually dated in high school for a few months, but then I broke his heart, he hated me for a long time after that. But we eventually became pretty good friends he dated someone else, after his graduation he joined the Coast Guard and they got married, had a little girl and later divorced. He had been divorced about 4 years when he saw me again. I was really excited he e-mailed me because I hadn’t spoken to him in 12 years it brought back a flood of memories, some really good times. He, his ex-wife and I were all in the Marching band together (I know a bunch of band geeks). We decided to meet and catch up and a year later we where married and I gained a wonderful step-daughter (Haley), I have no kids of my own, but we are currently trying.
Soon after we were married my husband was diagnosed with Sarcoidosis, an immune deficiency that is currently attacking is lymph system with granulomas in his lymph nodes. Problem is the doctors don’t know how a person contacts this however we have reason to believe it is environmental. I stated that he was in the Coast Guard well after Hurricane Katrina he did a lot of messy, nasty clean up work and was exposed to harsh environmental waste. There has been links to some workers of 9/11 contacting this disease. The disease can be fatal, but so far is treatable. He is in a lot of pain, but is still able to function and work day to day due to the wonders of pain medication. He was on Prednisone for over 9 months which led to signs of Osteoporosis in his hips and back so they took him off of it. The prednisone was meant to control the granulomas in his lymph’s from spreading and enlarging. But I guess his doctor felt the osteoporosis was more threatening and took him off prednisone. He will go back to the doctor in June for a check up and another CT scan. At this point all we can do is try to control the pain and hope they go away. Many articles we have read suggest Sarcoidosis will usually disappear in 2-3 years. Well it has been at least 2 years now that we know of so we are praying and hoping for a miracle.
I guess my goal for this blog is to inform people about Sarcoidosis and hopefully help someone get through the day. However, this will not be totally about Sarc, but about our day to day life.
Thank you I hope you enjoy it.
A few months after my divorce my future husband (Ryan) found me on MySpace which I truly believe happened for a reason and came about when I really needed someone. I know “you married someone you met on the internet”. Well not exactly we had actually met in high school my sophomore year in 1992. We had actually dated in high school for a few months, but then I broke his heart, he hated me for a long time after that. But we eventually became pretty good friends he dated someone else, after his graduation he joined the Coast Guard and they got married, had a little girl and later divorced. He had been divorced about 4 years when he saw me again. I was really excited he e-mailed me because I hadn’t spoken to him in 12 years it brought back a flood of memories, some really good times. He, his ex-wife and I were all in the Marching band together (I know a bunch of band geeks). We decided to meet and catch up and a year later we where married and I gained a wonderful step-daughter (Haley), I have no kids of my own, but we are currently trying.
Soon after we were married my husband was diagnosed with Sarcoidosis, an immune deficiency that is currently attacking is lymph system with granulomas in his lymph nodes. Problem is the doctors don’t know how a person contacts this however we have reason to believe it is environmental. I stated that he was in the Coast Guard well after Hurricane Katrina he did a lot of messy, nasty clean up work and was exposed to harsh environmental waste. There has been links to some workers of 9/11 contacting this disease. The disease can be fatal, but so far is treatable. He is in a lot of pain, but is still able to function and work day to day due to the wonders of pain medication. He was on Prednisone for over 9 months which led to signs of Osteoporosis in his hips and back so they took him off of it. The prednisone was meant to control the granulomas in his lymph’s from spreading and enlarging. But I guess his doctor felt the osteoporosis was more threatening and took him off prednisone. He will go back to the doctor in June for a check up and another CT scan. At this point all we can do is try to control the pain and hope they go away. Many articles we have read suggest Sarcoidosis will usually disappear in 2-3 years. Well it has been at least 2 years now that we know of so we are praying and hoping for a miracle.
I guess my goal for this blog is to inform people about Sarcoidosis and hopefully help someone get through the day. However, this will not be totally about Sarc, but about our day to day life.
Thank you I hope you enjoy it.
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