Finally a new journal
Hello all, I am trying this once again, I already started a journal, but then it was gone. Anyway, it has been over a year since I wrote a journal, I have written one in my head many times but never got it posted to the forum. Today I am feeling somewhat good so I thought I would use that energy to journal & let you all know what has been going on in my life.
As some of you know I live with my daughter, Misty & my two grandchildren, Deylan, 17 & Emily, 13. They moved in with me when my husband passed away going on 6 years in November, my how time flies. Doesn't seem like it has been that long, in my mind it is only a year or two. I have a strong faith though so I will see him again & have many happy times with him. We are all just plugging along, there is always one or two of us down.
Misty has MCTD which includes Lupus, Scleroderma, RA, Sjogren's, & Dermatomyositis. She is now on a chemo drug that helps to further suppress her immune system, she gives herself a shot in her stomach every Thursday night & it makes her really sick for a few days, I have to step up & help with the kids, getting Emily off to school & being up when she gets home, dinner for both kids etc. Sunday I sleep all day so I can help on Monday. We do see an improvement in Misty's health so it is all well worth it & I would do it anytime. Misty is a wonderful mother to her kids & I hate to see her when she is so sick that she can't take care of them.
Deylan is a heart patient & has had many surgeries & procedures. His cardiologists have been saying for years that he can not do anything, no lifting, no running, no wrestling & it has very much limited his future prospects, all to keep his pulmonary pressures down, staving off a double lung transplant. Exciting news, his cardiologist has released him to do all of these things now because his lung pressures at his exam a couple months ago is normal. Yay, this was totally unexpected & now Deylan has a whole different future ahead, he has no idea what he wants to do, but we just tell him he has plenty of time to decided. Whatever he decides he has to talk to his cardiologists & run it by them but for the most part, beyond wrestling & such, the skies the limit.
Emily has what are called absence seizures from epilepsy & it seems as though her neurologist has them somewhat under control. He upped her meds & now she only has a few a day, much better than the hundreds she was having. More good news: She has had allergies to wheat, milk, pork & banana's for about 4 years, last test a month ago & they are all gone. She has to slowly reintroduce them into her diet & we have been doing just that. The first thing that she wanted to eat was Twinkies & a Hersheys milk chocolate bar was another. She still isn't eating pork or banana's, those were her biggest allergies. Next weekend she is having a banana. Our freezers & kitchen are jam-packed with gluten free, milk free products & ingredients. Misty was always baking for Emily, her grocery bill was huge every month. This was a big part of our lives, everything she ate was checked or homemade, even her cheese was made from cashews. Now it seems like we are all exhaling, another big stressor gone. Woot Woot!!!!
I have been crashing for over a month but am now on the mend for a few days. Had a good day on Friday so I went shopping, stopping off to get myself a double shot mocha. Yummy. It was a fun time, not the shop till you drop sessions I used to do but my new "pace till you fall on your face" session of about 2 hours, seemed like all day to me. I was in bed the next day, but it is how it is. Every so often it comes around & hits me in the face how limited I am, I guess I get so used to my new normal that I forget what I used to be able to do. I was reading on facebook about all of the things people are doing & in one day! I always feel stressed & exhausted reading what they are doing & then I thought, wow, I used to do that & it didn't tire me out. Sad that my poor body is just so limited. I know I will find my happy place in my new normal again soon but for now I am sad. I have been putting off going out to the shop & getting a sleeping bag to wash for Emily's sleep over she is having this weekend. I have expended so much energy going over it & over it in my mind, my body says no, but my mind says do it before it is last minute. I am such a procrastinator, that's always been my downfall but even more now. Well, I have gone on & on so I think I will end this here. I hope you all enjoyed my ramble, I look forward to your journals because I love getting to know you each better. Hugs, Denise
As some of you know I live with my daughter, Misty & my two grandchildren, Deylan, 17 & Emily, 13. They moved in with me when my husband passed away going on 6 years in November, my how time flies. Doesn't seem like it has been that long, in my mind it is only a year or two. I have a strong faith though so I will see him again & have many happy times with him. We are all just plugging along, there is always one or two of us down.
Misty has MCTD which includes Lupus, Scleroderma, RA, Sjogren's, & Dermatomyositis. She is now on a chemo drug that helps to further suppress her immune system, she gives herself a shot in her stomach every Thursday night & it makes her really sick for a few days, I have to step up & help with the kids, getting Emily off to school & being up when she gets home, dinner for both kids etc. Sunday I sleep all day so I can help on Monday. We do see an improvement in Misty's health so it is all well worth it & I would do it anytime. Misty is a wonderful mother to her kids & I hate to see her when she is so sick that she can't take care of them.
Deylan is a heart patient & has had many surgeries & procedures. His cardiologists have been saying for years that he can not do anything, no lifting, no running, no wrestling & it has very much limited his future prospects, all to keep his pulmonary pressures down, staving off a double lung transplant. Exciting news, his cardiologist has released him to do all of these things now because his lung pressures at his exam a couple months ago is normal. Yay, this was totally unexpected & now Deylan has a whole different future ahead, he has no idea what he wants to do, but we just tell him he has plenty of time to decided. Whatever he decides he has to talk to his cardiologists & run it by them but for the most part, beyond wrestling & such, the skies the limit.
Emily has what are called absence seizures from epilepsy & it seems as though her neurologist has them somewhat under control. He upped her meds & now she only has a few a day, much better than the hundreds she was having. More good news: She has had allergies to wheat, milk, pork & banana's for about 4 years, last test a month ago & they are all gone. She has to slowly reintroduce them into her diet & we have been doing just that. The first thing that she wanted to eat was Twinkies & a Hersheys milk chocolate bar was another. She still isn't eating pork or banana's, those were her biggest allergies. Next weekend she is having a banana. Our freezers & kitchen are jam-packed with gluten free, milk free products & ingredients. Misty was always baking for Emily, her grocery bill was huge every month. This was a big part of our lives, everything she ate was checked or homemade, even her cheese was made from cashews. Now it seems like we are all exhaling, another big stressor gone. Woot Woot!!!!
I have been crashing for over a month but am now on the mend for a few days. Had a good day on Friday so I went shopping, stopping off to get myself a double shot mocha. Yummy. It was a fun time, not the shop till you drop sessions I used to do but my new "pace till you fall on your face" session of about 2 hours, seemed like all day to me. I was in bed the next day, but it is how it is. Every so often it comes around & hits me in the face how limited I am, I guess I get so used to my new normal that I forget what I used to be able to do. I was reading on facebook about all of the things people are doing & in one day! I always feel stressed & exhausted reading what they are doing & then I thought, wow, I used to do that & it didn't tire me out. Sad that my poor body is just so limited. I know I will find my happy place in my new normal again soon but for now I am sad. I have been putting off going out to the shop & getting a sleeping bag to wash for Emily's sleep over she is having this weekend. I have expended so much energy going over it & over it in my mind, my body says no, but my mind says do it before it is last minute. I am such a procrastinator, that's always been my downfall but even more now. Well, I have gone on & on so I think I will end this here. I hope you all enjoyed my ramble, I look forward to your journals because I love getting to know you each better. Hugs, Denise
Replies
WOW! Denise! There is so much illness around you! I applaud you for your positive attitude and your willingness to help your family despite your disabling illness. I think you\'re awesome!
Very good news for Deylan. Life changing really! So happy to hear that.
I did EEG\'s for a living in my healthy years. I\'m sure Emily has had quite a few of those gooey head tests! I loved my work. Many children have absence seizures. They used to be called \"petit mal\" seizures. Lots of parents used to think their kids were just being rude, or not paying attention and punish them. THEN they find out the poor child was having an absence seizure and never heard a thing that was said by the parent. Imagine how frustrating for the child. Very often, kids grow out of these. Hopefully, that will happen for Emily.
I LOVE your phrase there. Pace till you fall on your face. I almost fell out of bed laughing. I\'m gonna remember that one. You have a good sense of humor.
Glad you journaled. Do it more often. It really is cathartic and it helps us get to know you better, which....we want!!
Big hugs, Denise. xo
Oh, my goodness. I was not aware of how bad your daughter\'s struggle is. I can only imagine how difficult that must be for all of you. It is so hard when you have an illness to care for others. So, I applaud your ability to rest and jump back in when you are needed. I know we don\'t do things for a reward, but I wouldn\'t be surprised to see that you are highly honored when we fully reach the Kingdom. Deylan\'s news is so wonderful. I was happy for that. I will keep Emily in my prayers. I do hope she improves.
You are so lovely. Keep moving onward and upward. Much love. Heather.
I remember from before all about your families health issues and as I previously stated I think your whole family is truly amazing and I have so much admiration for you all . You really touch my heart.What wonderful news for Deylan and all of you.Also great news for young Emily.Some relief for you all finally after so many austerities and hardships.Mercy from God.
So happy to hear you made if out for a couple of hrs and had your little coffee treat also Denise.Sometimes I think I\'m not too bad and I decide to venture out and then when I actually arrive there I realize that my better day is actually a very sick day as I struggle to hold up.I do understand your sadness in having to live with such physical limitations.I have enjoyed reading your journal.Thanks for sharing.You are a gentle soul and I value you as a friend. Your devotion to your family and your determination despite so many obstacles is truly admirable and gives me personal hope.Lots of love.xo
Thankyou for sharing your personal and family stories. It sounds like you all care for each other very much. I also feel it is hard to accept the way my body is. I hope you can keep us posted from time to time. Thankyou for all your support and interest. God bless, Tiina
Your love and support for your daughter and grandkids is so amazing - as a mom we would do anything for our kids, but it is especially hard with the limitations of illness. I am sorry to hear everyone has so many issues to deal with, but it does sound like some things are actually getting better, which is a huge blessing! I hope Deylan finds something that he loves doing that he never thought he would get a chance to do - how exciting for him. I pray your daughter sees great results from her new drug treatment, without too many side effects! And I hope Emily continues to heal from her seizures. Good for you on your outing and your yummy treat!