Before I get started writing this blog, please note that I would never actually do anything to harm myself. For those of my friends and family, this might be very hard to read, but I feel the need to share.
I am living with my EDS, but not handling it well. I have done plenty with my husband and boys this summer and never intend to stop, as long as I can. But, it never fails that I feel like I should be doing more.
I am feeling horrid about the situation that I have put my husband and kids in with my condition. For example, the other night I took a sleeping pill. I took it late because I have been trying not to take them, but that night I was having considerable pain. The next morning, I was having a hard time waking up. Since I sleep on the couch, Max always comes and sees me before Matt. Because I was having a hard time waking up, Max walked into Matt and said, "Mommy is not waking up because she took too many pills." OMG, I felt horrible. Can you just imagine it? Next Max is going to say something to someone at school and I am going to be accused of being a drug addict. AAHHHH, how very scary.
As far as Matt.....he pays for my disability every day. The day starts with me hurting every morning. Matt had to make the kids breakfast before he left for work today. Double duty for him. On days that I am managing in the morning, I do get things done during the day. I have to take care of the kids and do things for them. So, the house becomes and issue. I do manage to get one big thing done each day. Big things are laundry, dishes, cleaning bathrooms. I will never be able to clean the whole house in one day any more. It sucks. I am suppose to be taking care of my family. I am home everyday. I do not work outside the home. It is my job to do all these things. Unfortunately, my body just will not let me do those things all in one day.
There are some of you who really do not want to keep reading this paragraph (parents and siblings). I have said before that I have been sleeping on the couch for several (6) months. It makes things a little difficult in the "love" department if you know what I mean. It is now to the point that we actually have to schedule days so I can take my pain meds early enough that I am mostly pain free. It sucks big time. It is hard to feel love and loved when we cannot really "be" together.
So, I have all these things were I think I am failing. It does not help when I am in so much pain everyday. It has been really hard to be positive about anything. I have wondered what my families life would be like without me. I know it would be hard to begin with, but would they be happier in the end.
I do have these feelings some times and wonder, but I would never act upon them. I just could not imagine harming myself. (I just don't like pain, LOL). I know I have to be here for my kids, if not physically, then emotionally. And, Matt is the love of my life, I would never want to be anywhere without him (I think he feels the same).
I just had to put this in writing....maybe to see how stupid it is to feel this way.
26 July 2010
18 July 2010
Sure
I am not sure that I have anything to say really. I feel like I should be writing. I have not been here for so long. I am sure there has been so much that has happened since I last wrote.
It is mid-July and things are going quietly. Well, not really. The kids have been busy swimming and hurting themselves. The swim lessons are going swimmingly (ha ha ha). The boys are both doing great, really. Max is nearly swimming on his own. Well, he can swim by himself as long as he can hold his breath. It is hard to get him out of the water at times. There is a spray park at the pool where we do swim lessons. Max never wants to go in the spray park, but wants to stay in the pool and keep swimming. Max sliced his knee open one day while we were there. I actually had to use a steri-strip to hold it together. Might have used a stitch, but it was the knee and I am sure he would have ripped them open. So, I bandaged him up and off he went, being Max swimming and playing.
Ben is having a blast at swim lessons. He is so small, it is scary for me sometimes. In the week before he started swim lessons, we made an emergency trip to the dentist. He ripped the connective tissue between his upper lip and gums. Turns out that was not a big deal, but he did crack the tooth just above the gums. The doc was afraid that we might have to take out the tooth. Good thing is that it did not die so it is still there. He started swim lessons the next week and started loving it. Unfortunately for him, several days into swim lessons, he fell off the couch. When he did that, he dislocated his shoulder. I managed to pop it back in myself. Of course, I did not do it on purpose. I did take him to the doc and he agreed that I had popped it back in. Given my history of EDS, the doc did not bat an eye at what happened. Ben got a little sling (I did not know they made them that small). He sat out for one day of swim lessons, but was glad to get back. I am being careful with him for now. There are a few things at swim lessons that I am not letting him do. I want to make sure that my baby heals a bit before he goes back to the day to day.
On the way home from the doc with Ben that day and the car broke down. It was horrible. Matt and I freaked out and were afraid that we were going to need to buy a new car. Turns out it was only $530 repair.
Drugs are kicking in....better go.
01 July 2010
today
Good Morning world. We are all up, the sun is shining, and the skies are beautifully blue. We are going to have a great day, I just know it. Today is treat day for Max at swim lessons. We get to find out if he will be moving up a level. I am not sure if he will be doing it or not.
Great news is that Ben is going to be able to start real swim lessons next session. We have been swimming in the baby pool while Max has been in his lessons. Ben is jumping off the edge by himself. I have taught him to float on his back with his ears in the water (with me having a hand on his back). He can put his face in the water and blow bubbles. He is almost ready to go totally under the water. If I dunk him he will not fuss, but he is a little afraid to do it himself. Anyway, the pool director saw us in the water and decided that it was time to put him in lessons. I was surprised because when I asked the assistant director last week, she told me he had to be three before they would even consider it. Not only is he going into real swim lessons, he will be in basic level two to start. How awesome!!! He is excited. He has been wanting to jump off the diving board, even though Max still won't jump on his own. He will start on the 12th. I am a little nervous, but that is just the mommy in me.
I am still feeling pretty good. I have started taking a B-12 tablet each day and I think it is helping a little. I am still napping. But, I can wake up in the morning and after nap without feeling groggy. That is a big bonus. I do not feel like I have to sleep all the time right now. It is fabulous. I am getting more done around the house, which also makes me feel better. I have actually made real dinners for the last 4 days. Don't get me wrong, I feed my family every day, but I have been cooking. No fast food, no meals out of a box. It has felt great. We are all sitting down at the dinning room table and eating together. It is fun to hear the boys tell Matt all about their days.
The evening yesterday was great. After dinner, we took the boys to Wendy's. They each got their frostys for reading for the library summer reading program. I am so proud of them for reading. Max is reading on his own and Ben wants me to read to him all the time. After that we all went to the Nature Center and took a walk. It was so much fun. I love spending family time. It was so nice. I think Matt is wanting to do more (just in case he gets this job and leaves for 5 weeks). I, also, think that he may want to do more, even if he does not get this job and leave.
I am getting ready for the kids to both go to school this year. It is only July, but I already have school supply lists. I am still not sure when school starts. It is exciting, but sad at the same time. Max will be starting kindergarten and that means he is growing up. My first baby is growing up. Ben starts preschool this year too. He will go to school 9 to 11 on Mondays and Wednesdays. What am I going to do with myself? I am so used to having at least one of them with me all the time. Max did not start preschool until after Ben was born. I have spent nearly every day with Ben his whole life. It will be strange not to have him around. I am sure that, eventually, I will be happy to have the time and find something to do. It will also be much needed time to myself, if Matt gets this job.
Wow, I had a number of thoughts today. I guess the better I feel the more I have to say (maybe because I am doing more).
Great news is that Ben is going to be able to start real swim lessons next session. We have been swimming in the baby pool while Max has been in his lessons. Ben is jumping off the edge by himself. I have taught him to float on his back with his ears in the water (with me having a hand on his back). He can put his face in the water and blow bubbles. He is almost ready to go totally under the water. If I dunk him he will not fuss, but he is a little afraid to do it himself. Anyway, the pool director saw us in the water and decided that it was time to put him in lessons. I was surprised because when I asked the assistant director last week, she told me he had to be three before they would even consider it. Not only is he going into real swim lessons, he will be in basic level two to start. How awesome!!! He is excited. He has been wanting to jump off the diving board, even though Max still won't jump on his own. He will start on the 12th. I am a little nervous, but that is just the mommy in me.
I am still feeling pretty good. I have started taking a B-12 tablet each day and I think it is helping a little. I am still napping. But, I can wake up in the morning and after nap without feeling groggy. That is a big bonus. I do not feel like I have to sleep all the time right now. It is fabulous. I am getting more done around the house, which also makes me feel better. I have actually made real dinners for the last 4 days. Don't get me wrong, I feed my family every day, but I have been cooking. No fast food, no meals out of a box. It has felt great. We are all sitting down at the dinning room table and eating together. It is fun to hear the boys tell Matt all about their days.
The evening yesterday was great. After dinner, we took the boys to Wendy's. They each got their frostys for reading for the library summer reading program. I am so proud of them for reading. Max is reading on his own and Ben wants me to read to him all the time. After that we all went to the Nature Center and took a walk. It was so much fun. I love spending family time. It was so nice. I think Matt is wanting to do more (just in case he gets this job and leaves for 5 weeks). I, also, think that he may want to do more, even if he does not get this job and leave.
I am getting ready for the kids to both go to school this year. It is only July, but I already have school supply lists. I am still not sure when school starts. It is exciting, but sad at the same time. Max will be starting kindergarten and that means he is growing up. My first baby is growing up. Ben starts preschool this year too. He will go to school 9 to 11 on Mondays and Wednesdays. What am I going to do with myself? I am so used to having at least one of them with me all the time. Max did not start preschool until after Ben was born. I have spent nearly every day with Ben his whole life. It will be strange not to have him around. I am sure that, eventually, I will be happy to have the time and find something to do. It will also be much needed time to myself, if Matt gets this job.
Wow, I had a number of thoughts today. I guess the better I feel the more I have to say (maybe because I am doing more).
29 June 2010
Freaked out
I am letting the cat out of the bag a little early, but I am so nervous I am not sure how to feel. Matt has interviewed for a new job. It sounds really positive. The guy who interviewed him called and asked what his availability looks like for July 19th. Matt said pretty good. Then found out that he would be going to CT for 5 weeks.
I know that there are lots of single moms out there and lots of Army wives who do this all the time. I am just scared that something might happen to me. I have gotten with some close friends to talk to them about support while Matt is gone. Everyone is being great. I am feeling better than usual --minus the shoulder. I am hoping that I stay that way. School will start while Matt is gone. I feel a bit sad about that. Max is starting Kindergarten and Ben is starting preschool. It is all exciting for the family.
The job is a good one. It will certainly put our family in a much better place financially. We would be able to move to Holyoke, CO sooner than we thought. It will make our lives so much better. Matt will be missing somethings with the kids, but he will be working from home when he is here. So, that would give opportunities to see more of the kids things than if he worked 9 -5. So, while he misses some, he sees more than he would otherwise. I am not sure how he feels about that.
I am excited for him....it is one of those dream jobs for him. It is something he really likes and is good at doing. He will get great experience and if he wanted to move companies later, he would have a great resume'.
I have been super positive the last couple weeks (even with all the minor injuries). I am hoping that those feelings will continue. Matt and I have already made a list of things we would like to have done before he leaves so my life will be a bit easier. I am going to be busy with the boys. We have next week off of swim lesson and then it is back to 5 days a week for Max and Ben will start Saturday mornings. Then another week off swim and then they both will be doing Tues/Thurs evenings. School will be starting in there somewhere too. It will be busy and I think if we just stay that way things will be good. My life is about my kids and family. That is a choice I made and I love it.
I know that I will need some me time still and I will get a few hours each week. Ben will be in preschool for two hours on Mon/Wed in the AM. I have decided that I will go to Starbucks and just chill during that time. I have also talked to some friends about watching the boys for a couple of hours a week, just to let me get a grip on life. Who knows, I may not need that time. I may love the new life that we will have. I know that having to get up every morning and get Max to swim lessons has really helped me get out of my funk. I can only imagine what it will be like when they are both going to school.
I am scared, but I know that others do it. I will just need all the positive thoughts I can get to make sure I stay healthy while he is gone. I may just have to come to the realization that it truly is going to be mind over body.
I CAN DO THIS!!!!!
I know that there are lots of single moms out there and lots of Army wives who do this all the time. I am just scared that something might happen to me. I have gotten with some close friends to talk to them about support while Matt is gone. Everyone is being great. I am feeling better than usual --minus the shoulder. I am hoping that I stay that way. School will start while Matt is gone. I feel a bit sad about that. Max is starting Kindergarten and Ben is starting preschool. It is all exciting for the family.
The job is a good one. It will certainly put our family in a much better place financially. We would be able to move to Holyoke, CO sooner than we thought. It will make our lives so much better. Matt will be missing somethings with the kids, but he will be working from home when he is here. So, that would give opportunities to see more of the kids things than if he worked 9 -5. So, while he misses some, he sees more than he would otherwise. I am not sure how he feels about that.
I am excited for him....it is one of those dream jobs for him. It is something he really likes and is good at doing. He will get great experience and if he wanted to move companies later, he would have a great resume'.
I have been super positive the last couple weeks (even with all the minor injuries). I am hoping that those feelings will continue. Matt and I have already made a list of things we would like to have done before he leaves so my life will be a bit easier. I am going to be busy with the boys. We have next week off of swim lesson and then it is back to 5 days a week for Max and Ben will start Saturday mornings. Then another week off swim and then they both will be doing Tues/Thurs evenings. School will be starting in there somewhere too. It will be busy and I think if we just stay that way things will be good. My life is about my kids and family. That is a choice I made and I love it.
I know that I will need some me time still and I will get a few hours each week. Ben will be in preschool for two hours on Mon/Wed in the AM. I have decided that I will go to Starbucks and just chill during that time. I have also talked to some friends about watching the boys for a couple of hours a week, just to let me get a grip on life. Who knows, I may not need that time. I may love the new life that we will have. I know that having to get up every morning and get Max to swim lessons has really helped me get out of my funk. I can only imagine what it will be like when they are both going to school.
I am scared, but I know that others do it. I will just need all the positive thoughts I can get to make sure I stay healthy while he is gone. I may just have to come to the realization that it truly is going to be mind over body.
I CAN DO THIS!!!!!
25 June 2010
Tough week
I have decided over the last month or so that I am going to go for it and enjoy life. This week was not one of them. Started out great....Max started swim lessons and loved them. I even got Ben into the kiddie pool while Max was in his lesson. And, after swim lessons, the kids get to play at the spray park for no additional charge. We had so much fun at the beginning of the week.
Wednesday came around and after swim lessons, we went to Walmart. I made the huge mistake of picking up Max and putting him in the shopping cart. He is just a little too heavy for me to keep doing that. I pulled out my shoulder, wrist and two fingers. Even though I was in pain, I still go my shopping finished. Just figured if this is the way it is going to be then maybe I will just have to work through pain and accidents. I iced it, took meds and felt better in the AM....while it seems that my shoulder hurts every evening, at least I can do some things in the AM.
Thursday morning, we were all getting ready for swim lessons. I was in my room with the door closed, getting dressed, when I heard Ben fussing at the door. I did not think much about it because he does that when I am in there and he wants me. Finally, Max opened the door and said, "Blood, Mommy." I came running out and Ben was bleeding from the mouth. I finally got it stopped enough to realize that he had ripped the piece of skin between his upper lip and gums. I know that facial and mouth wounds bleed a lot, but after looking at it, I saw how bad the cut was. I decided then that we should to the Dentist for an emergency visit. Turns out that the cut was not a big deal and really nothing to worry about. BUT, the Dentist wanted x-rays. After the x-rays, Ben was very good by the way, he was able to pull them up on his computer. He showed me where Ben had fractured his right front tooth. The fracture is above the gum line. Nothing we can do about it right now. We need to keep an eye on it. If it abscesses, then we have to go back in and they will have to take the tooth out. There is a chance that it could just die too. Needless to say, we did not make it to swim lessons that day.
Friday we did make it to swim lessons. Both of the kids were so happy. Max did well, but did not jump off the diving bored by himself. He is getting closer and closer to doing it. Then everyone went outside to the small pools. Max's does his lesson in the 3 1/2 foot pool. He does really well. Ben and I play in the 1 1/2 foot baby pool. Ben loves it. I have even gotten him to put his head under the water. I was so excited. After Max got done with his lessons in the big pool, he came and joined us in the little pool. Somewhere along the way he sliced his knee open. The life guard did not have a first aid kit (really?). Finally someone found one after I had been there putting pressure on it for 4 minutes. I did get the bleeding stopped and it did not look as bad as it had in the beginning. So, the life guard cleaned it with alcohol and put two band-aids on it. Max was crying that he still wanted to play in the spray park.....so I told Max we could play until his band-aid fell off. It did not last long. When we got in the car, I was still not sure we should not go get stitches. I decided to patch it up myself. I went and bought some adhesive strips and neosporin spray. I got it all cleaned and bandaged. He was tentative about it this AM, but after naps, he totally forgot about it.
I have just put them to bed and looking forward to some quiet time with Matt tonight. I will most likely take some pain meds and drug out for the night. Matt will be gone for the next two days, so I most likely not take any pain meds. While they really help to control my pain and I seem to be pretty coherent on them, I am so afraid to take them when it is just me and the boys. What if something were to happen and I could not drive because of pain meds? What if I was so out of it that I could not respond properly? It scares me to be at home on pain meds with the kids by myself. So, no pain meds for me this weekend.
To end, the week started out great, but ended up not so much. We are all still here and healthy as we can be. Max is still loving swim lessons, but wants to do them too. (He will starts Auqa tots in July). Matt has worked hard and is off to a conference for the weekend. Me, I am still in pain and learning to deal with it. I am trying not to let it slow me down too much. I am a bit less energetic and mobile by the evenings, but I love my days.
Wednesday came around and after swim lessons, we went to Walmart. I made the huge mistake of picking up Max and putting him in the shopping cart. He is just a little too heavy for me to keep doing that. I pulled out my shoulder, wrist and two fingers. Even though I was in pain, I still go my shopping finished. Just figured if this is the way it is going to be then maybe I will just have to work through pain and accidents. I iced it, took meds and felt better in the AM....while it seems that my shoulder hurts every evening, at least I can do some things in the AM.
Thursday morning, we were all getting ready for swim lessons. I was in my room with the door closed, getting dressed, when I heard Ben fussing at the door. I did not think much about it because he does that when I am in there and he wants me. Finally, Max opened the door and said, "Blood, Mommy." I came running out and Ben was bleeding from the mouth. I finally got it stopped enough to realize that he had ripped the piece of skin between his upper lip and gums. I know that facial and mouth wounds bleed a lot, but after looking at it, I saw how bad the cut was. I decided then that we should to the Dentist for an emergency visit. Turns out that the cut was not a big deal and really nothing to worry about. BUT, the Dentist wanted x-rays. After the x-rays, Ben was very good by the way, he was able to pull them up on his computer. He showed me where Ben had fractured his right front tooth. The fracture is above the gum line. Nothing we can do about it right now. We need to keep an eye on it. If it abscesses, then we have to go back in and they will have to take the tooth out. There is a chance that it could just die too. Needless to say, we did not make it to swim lessons that day.
Friday we did make it to swim lessons. Both of the kids were so happy. Max did well, but did not jump off the diving bored by himself. He is getting closer and closer to doing it. Then everyone went outside to the small pools. Max's does his lesson in the 3 1/2 foot pool. He does really well. Ben and I play in the 1 1/2 foot baby pool. Ben loves it. I have even gotten him to put his head under the water. I was so excited. After Max got done with his lessons in the big pool, he came and joined us in the little pool. Somewhere along the way he sliced his knee open. The life guard did not have a first aid kit (really?). Finally someone found one after I had been there putting pressure on it for 4 minutes. I did get the bleeding stopped and it did not look as bad as it had in the beginning. So, the life guard cleaned it with alcohol and put two band-aids on it. Max was crying that he still wanted to play in the spray park.....so I told Max we could play until his band-aid fell off. It did not last long. When we got in the car, I was still not sure we should not go get stitches. I decided to patch it up myself. I went and bought some adhesive strips and neosporin spray. I got it all cleaned and bandaged. He was tentative about it this AM, but after naps, he totally forgot about it.
I have just put them to bed and looking forward to some quiet time with Matt tonight. I will most likely take some pain meds and drug out for the night. Matt will be gone for the next two days, so I most likely not take any pain meds. While they really help to control my pain and I seem to be pretty coherent on them, I am so afraid to take them when it is just me and the boys. What if something were to happen and I could not drive because of pain meds? What if I was so out of it that I could not respond properly? It scares me to be at home on pain meds with the kids by myself. So, no pain meds for me this weekend.
To end, the week started out great, but ended up not so much. We are all still here and healthy as we can be. Max is still loving swim lessons, but wants to do them too. (He will starts Auqa tots in July). Matt has worked hard and is off to a conference for the weekend. Me, I am still in pain and learning to deal with it. I am trying not to let it slow me down too much. I am a bit less energetic and mobile by the evenings, but I love my days.
24 June 2010
boys
Okay, so it has been awhile since I have been here. I have been busy with the boys and trying to live a normal life.
My boys are blossoming. Max has started reading...blows me away....reading before kindergarten. Ben starts pre-school in August and he cannot wait to go to school. Max is taking swim lessons everyday. He loves them and is doing so well. I am so proud of him. Ben and I get to wade in the kiddie pool while Max is swimming. Ben seems to like it until he falls over and goes in face first. He is working on it though.
Me, I am in constant pain. Yesterday I made the mistake of picking Max up (he jumps so it is not so hard for me). I pulled out my shoulder, wrist and two fingers. Still had to finish shopping. Manage to do so many things despite the pain. I am going on the 7th of July for an MRI. Then it will be back to VA ortho to see what they want to do.
I am afraid to have surgery on my shoulder......There are things that can be complicated about surgery on someone with EDS.
I am feeling very emotional about this all.
My boys are blossoming. Max has started reading...blows me away....reading before kindergarten. Ben starts pre-school in August and he cannot wait to go to school. Max is taking swim lessons everyday. He loves them and is doing so well. I am so proud of him. Ben and I get to wade in the kiddie pool while Max is swimming. Ben seems to like it until he falls over and goes in face first. He is working on it though.
Me, I am in constant pain. Yesterday I made the mistake of picking Max up (he jumps so it is not so hard for me). I pulled out my shoulder, wrist and two fingers. Still had to finish shopping. Manage to do so many things despite the pain. I am going on the 7th of July for an MRI. Then it will be back to VA ortho to see what they want to do.
I am afraid to have surgery on my shoulder......There are things that can be complicated about surgery on someone with EDS.
I am feeling very emotional about this all.
09 June 2010
Forgetting other pain
I don't know who else watches House on Fox. If you do, remember when House was trying to get off of pills. He took them for the pain in his leg...so to forget about the pain in his leg, he stabbed his hand.
I feel that way these days....no, I don't mean I want to stab myself in the hand. I mean that the pain in my shoulder has made me forget about most of my other pains. The mornings are pretty pain free, but by sleep time, I just want to cry from the pain. I am sure that it is because I use it so much during the day. I am careful not to pick heavy things up, but you don't realize how much you use your shoulder until it hurts.
I am not getting down about. It is just a part of my life. I have accepted that pain is something that I am going to have to live with. I am not freaking out about it or letting it stop my life.
Despite the afternoon and evening shoulder pain, I have cooked good healthy dinners for the last three nights. No fast food, no junk. Yummy healthy food. I am working on having the family eat healthier. Hoping two things come from this. First, I am hoping that it will help me and my joints. Second, I need to make sure that I maintain my weight. I really would like to loose 5 pounds that I have gained since I was diagnosed.
Well, I am off to play with my boys today. Cool and yucky outside, but we are going to have fun inside.
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