A little of my life & how I am doing
Well, I haven't even tried until now to post on this new site. It takes a lot out of me to do a journal & then if it is lost I will probably wait for another day to redo one. Today I am really tired after a couple of active days, today I am just sitting all day & recouping some energy. My legs feel tired & heavy so it is easy to just sit. I am not crashing which I fully expected to happen, I guess that goes to show how we have no control over this illness. I have a tendency to think I can control each day & the amount of energy I have but I forget I have no stamina anymore. In my mind I am able to plan things to do but then there is just nothing in me to push or motivate me. My daughter Candy came over for a weekend from Corvallis, MT & made us a nice veggie & herb gardens out of totes. Just off the edge of the porch so all we have to do is water them. I have loved to garden my whole life but since this illness hit I have had to give it up, the love for it & excitement that comes in the spring is the same as before so I always plan this nice garden & think I can do it but then reality sets in & slowly one by one my plans are gone. So, Candy thought this would be good & it is but I am not good at watering, usually I just don't have the energy. Makes sad that I am not able to keep up. Misty would usually be able to help but she has been down for about 2 months.
My daughter, Misty's illnesses have really got to her this year. She has Mixed Connective Tissue Disease (MTCD) Which is a combination of Lupus, Scleroderma, Dermatomyositis, Rheumatoid Arthritis & maybe now Sjogren's, she also has Fibromyalgia. For the most part, she is a very strong woman & doesn't let her illnesses get to her. Her main priority is her son & daughter & raising them with a good childhood. Deylan is now 18 & she has homeschooled him. Emily has gone to public school, Misty just couldn't do both of them. For the last 2 months, Misty has been in a lot of pain & unable to do anything at all. Her diseases have infected her jaw & the connective tissue in the joint, causing her face to swell & the nerves in her jaw to be compressed by some teeth she had. Yesterday I drove her 3 hours away to a dental surgeon & she had 3 teeth surgically removed, two on one side & one on the other. He gave her more of the antibiotic her Doctor had her on to help clear up the infection because her immune system is so depressed. He also gave her pain pills to help her through, Misty has always been very much against taking pain pills but for the last two months, she has needed them. We are hoping this dental procedure will help with the pain she has been in. The dental surgeon felt the infection should go away & the nerves will heal up so I am hopeful. Today she is all swollen up but says her pain is better than before the surgery.
Day before yesterday we drove four hours away to deliver my granddaughter, Emily to my daughter, Sarah & her husband, Chris. They are taking her to Disneyland, this is the third time they have taken her. They took Deylan once & next year when he graduates they are taking him wherever he wants to go. He is really into history so I see a lot of museums in their futures. So nice of them, they are Disneyland fanatics. They have asked me to go with them every year but I just don't think I have it in me, I would spend most of my time enjoying the motel room.
Even with the hours of driving in the last couple of days, I have not crashed. I am so happy I didn't but it still might be too soon to tell. Today has been a sit & play on the computer, watch TV kind of day. Last night I went to bed & slept for about 16 hours so that helped some even though sleeping doesn't give me any more energy than before I feel more clearheaded. Speaking of clearheaded I use Dark Chocolate every day & I can sure tell a difference in my thinking when I have been without I get very foggy brained & make lots of mistakes. It helps nothing with my fatigue or stamina but I am driving again so that says something I guess. Just a thought for you, my friends.
Guess I will go now & hope this posts, many hugs to all, Denise
Replies
I'm sorry about Misty. To see people we love suffer is often more difficult than coping with our own challenges. Hope you do not have a crash from the joys of activity.
Misty's illness sounds terrible. I'm so sorry for her, but I am glad that she is still doing a good job of raising her kids. I understand about watering plants. I only have a few, but I struggle to get them watered. It's really hard some days to get outside and drag the hose, etc. AGH! Rest up, dear one. Much love.
Hello there lovely lady. I'm so sorry for Misty.That is a lot to live with. I can understand how difficult it must be for you also. You are such a strong devoted family. I was just talking about you yesterday to Frank. He was talking about our lawn and how he wished he could mow it and not have to pay the lawnman, and I was telling him about you and Misty sharing the mowing.
I hope Emily has a wonderful time at Disneyland . I'm so happy to hear that other family members lend a hand and add that little bit of extra joy for your grandchildren. I'm sure those treats make you very happy also. We are blessed to have family. I didn't remember that you had three daughters. How lovely that Candy made the garden for you. I'm in bed today resting.I had 7 hrs broken sleep last night. That is a good night for me because I managed to go back to sleep each time after I woke up. It's raining and overcast outside but I'm enjoying the cooler weather, although it's still very warm.
I know I have told you before that you are an inspiration to me.Please allow me to tell you again. You give me strength and always help me to see that there is a positive side if we look for it, despite all the struggles. God bless you for all that you give. Love and gratitude always.Diane xoxoxoxo
I'm so glad your journal posted! I haven't tried to write one on the new site yet. I feel like I would break down crying if it didn't post after my hard work. I hope your mini garden brings you some of the pleasure you used to experience with your full sized garden, and isn't too much work. It seems as if everything in our lives has shrunk in one way or another - even things like gardens. I'm sorry your daughter has so many health issues - it's hard to see our kids suffer. I'm glad you can be there for each other and for her kids. And it's great you have other family to take the kids on great vacations - very nice.
Yayyyy! A Journal! Good for you! I find that I can journal, post hugs, send messages, change my cover page. I'd love to be able to change my status update. They REALLY need to fix that!
DID YOU SAY DARK CHOCOLATE? Whoa! A woman after my own heart. I eat Dove Dark little chocolates every day of my life. Just two or three of the small wrapped up ones, but they hit the spot! I credit chocolate as the possible solution to world peace! Lol ! Well, seriously, we could sure use some more of that right?
DENISE, MY HEART GOES OUT TO YOU
in a way I can't describe. My daughter has lupus, rheumatoid arthritis and fibromyalgia. She has had to give up any hopes of becoming a mother. I do not complain about the constraints of CFS around my house. I watch what my child is suffering through and just wish I could take it from her!
God help our children. And us as mom's as we struggle to be strong for them! ♡♡♡
It's great that you aren't crashing. And it sounds like you are resting and pacing when you need to. Dark chocolate is great...I have it in the form of cocoa twice a day...fab for brain clarity. All my best wishes for your daugther's recovery from her dental work. It must be incredibly hard for you being ill and coping with your daughter's illness too...what a worry. Sounds like you are both strong women though. It's good to read what is going on for you...thanks for sharing even though it is an effort. Love and light, Lupin xx
finally i get to write a comment on one of your lovely journals.......feel like i got to know you a lot better reading this.......what a good momma you are! i can feel the love for your family pouring through the lines........i didn't know dark chocolate was a brain organizer, does milk or white chocolate help at all, those are the kinds i like in choco world........i wish you could go to disney......i went when i was 21 and it was fun, but also surprised me......cause mickey mouse pinched my bottom. made me not only surprised, but well ...MAD. hate to think of Mickey as a masher, but my goodness.......went to the one in Anaheim. so long ago.......i wonder what they have available for disabled people to help them enjoy the park if they go.........
glad Emily gets to go ........fun trip for a child to enjoy! the garden sounds really nice. i put more seating around my yard so i can sit as i water the beds. a bench halfway between the front and the back yard........a wicker loveseat by the farthest bed for a rest break........another wicker chair by the front garden beds.......it really helps get me out there, knowing i can sit and just be still while the hose does the work. there are days when we just can't do anything like that.......and i get that too. but when i can it sure does lift my spirits to be out there. i hadn't gardened since i was a little girl with my mommy teaching me the way of growing things! i like to plant things and think what size they will be next year, in five years ......it makes me feel more purposeful. i lost one tree this year. a small evergreen tree......they are very affordable, only five dollars per little Christmas tree......but every plant i've now put in this particular spot has bitten the proverbial dust. so no more plants in that spot. ........your daughter is making good decision regarding her health, she has complicated challenges just like you/us.......and there is nothing wrong with taking medicine that alleviates physical distress. i felt really lucky to be able to take the one pain pill i can take after so many hypersensitive issues with so many of them. opoids are not my friends......but i can take this one kind and i am grateful. i watch myself because i worry that if i don't that med could change me, but i have learned that using aids, whether it's my cane, the electric carts, getting the handicapped sticker or taking the right meds etc is the very definition of smart choices. we have to save energy any way we can.........by using aids we do ourselves a rock solid high five instead of ending up at the check out at a store in tears overwhelmed by pain......or by falling/almost falling because we don't want that doggone cane or walker.......it took me time to get over the pride hurdle and realize if i am in less pain due to say using an electric cart then when i get home i can get my refrigerated items in the frig......i may still have to wait on the non perishables for a day or three, but i get to pick out my own food, have a chance to chat with other shoppers and even get a ray or two of sun after being inside for so long. i am encouraged after reading your journal.......and have been so blessed to have your support and friendship! i admire you and i will always pray in care of your health and welfare........and that you can have little moments of joy doing the things you love.........take care, huuuuuuuug......love you sweetie!