Well, I talked to Dr. Hatch yesterday afternoon and he made it very clear that there is nothing more he can do for me. He told me he's not willing to stent my veins and that he doesn't think my veins can handle much more. Felt like someone punched me right in the stomach. Jake came home from work at 11 last night and I just lost it. I wept and wept while he held me for a long time. I had held it together all day but I couldn't hold it together any longer. It is difficult enough to have a husband, a home, and 4 children ages 7 and under to take care of while one feels normal and healthy. But to try and do it all with very little energy and a whole lot of pain and dizziness is getting to be too much. Something's gotta give. I only have so much energy and there is so much to be done. It's causing my children to suffer because I don't have the energy to be extra patient with them, or run and play with them. It's not fair to them. My greatest joy comes from taking good care of my family and home, and I feel like a failure every second of the day. I had lost all hope and felt like there were no more answers for me. After I finally got it together and took some deep breaths, Jake showed me some research that he had done on his breaks at work. He told me that we are going to get someone to help with the housework 10 hours a week so that I can spend the energy that I do have on my children. This morning, he called from work and said that there was a lady coming to look at the house and discuss a plan. I am going to have to fight my tendency to feel guilty for not being able to do it all. Before bed, Jake gave the most beautiful prayer, acknowledging God's hand in our lives, knowing that He has a plan for us, and praying for us to continue to be guided and directed as to what to do for my health. I am so blessed to have Jake. I am married to my best friend in the world.
Email from my sweet husband:
the following is a dr that does stent the azygos. he claims that you have to place one that is 20% larger than the azygos.
i think he's our guy!
http://www.southcoastveincare.com/joseph-hewett.php?tid=1
here's some info from a conference he spoke at
http://www.reformedms.org/ms-ccsvi-news/venous-stenting-and-ccsvi-dr-hewett-presentation-january-29-2011-seattle
conversation talking about the medicine i mentioned
http://www.dvtforum.com/index.asp?forumID=17615&subject=Internal-Jugular-vein-clot
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Anybody heard of Dr. Hewitt? Jake is convinced we need to go to California so that I can be treated by him. PLEASE let me know if you've had any experience with him.
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Oh, Toby, I'm so sorry. You are in my prayers always! Can we maybe set up a time that I can have your kids over each week, just to help you out a little? I would love to be able to do something.
ReplyDeleteToby, feeling like a failure every day is ridiculous. Cut it out. If I get up and get a shower and get meals on the table, the day has been an enormous success!!! :) You are an amazing person, wife and mother. Just relax. Let this lady come and take the load for you. You don't have to run faster than you have strength. Your kids are wonderful and thriving; you have nothing to worry about. Just the fact that you are home with them and loving them is ENOUGH and MORE. You know that! Just think about what you would say to me if I were the one in your shoes. You would say exactly what I'm saying!!! So, take your own advice :) and let go of the expectations for how you think things are supposed to be. Grandma Bushman had help with the housework when she had 4 little ones, even before the other 3 were born!
ReplyDeleteToby you are possibly on of the most wonderful and inspirational people I have ever meet. We all have our struggles, and I can truly not even begin to imagine what you have gone through and continue to each and every day, but listening to you and how you can find even the smallest glimpse of light and hope in any situation is such a great example and help to me. Thank you so much for sharing so much with us and it truly touches so many people and myself! There are so many people who love and care about you and that are here for you. Jake is seriously such a blessing and I am so grateful that you have him! I pray that this new doc may be able to help you, you are always in our hearts and prays.
ReplyDeleteSo great of Jake to get you some housecleaning help! I don't know how anyone with 4 kids keeps up with it all, and with MS on top of it. Wow! I struggle with just 2 kids! I agree with Kim about getting rid of all expectations.... Love you!
ReplyDeleteToby, I am getting teary-eyed for you! I am so sorry you have to deal with this disease. I think you are so amazing and admire everything you are doing for your family. Don't give up and just keep swimming! Jake is awesome. So glad you have each other.....
ReplyDeleteGood for Jake! Please don't beat yourself up Toby. You are a wonderful person, an inspiration to those around you. You are loved and valued by all who know you and by your Father and Mother in Heaven. Keep your chin up, stay away from superficial blogs, take care of yourself and your children and you will be an example to them of what is truly important in this life. That is to love and be loved. You rock at that!
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