It's 3:28am and no I did not plan to wake up this early. In fact my medication has made me groggy and at this moment I am having trouble not being cross eyed.
Last night I attended church, as usual and I am reminded, that I must live my life as a christian, with zeal and excitement, for as it says in Matthew 25 verse13 "Watch therefore, for you know neither the day nor the hour in which the Son of Man is coming" As a new christian, I am faced with the ENemy's work, because as my guide told me last night, I left his army and this ticked him off, so I am faced with dreams, and moments of panic and sleeplessness for no good reason.
So tonight, when I woke scared for unknown reasons, I got up and turned to my bible and was faced with two scriptures, first Psalm 118 verse 14 "The Lord is my strength and song, And He has become my salvation!"
And so, praying I am reminded that nothing can harm me in the long run, and I can lay my head back to sleep for a few hours and rest in the knowledge that the :Lord my God is keeping me safe. Amen
Monday, July 13, 2015
Sunday, July 12, 2015
Long time, no blog
Life has taken some amazingly strange turns for us over the last few years. I am coming back to this blog after having my house burn down, having had many surgeries, having been homeless for two years, a move to Colorado and finally a settling in Alamosa, Co. Oh, also, I had wandered into a church recently, and I have been saved! God is Good! So the focus of this blog will be far more Christian, especially as I come to learn my faith and what it requires.
Also, there will be a focus on homeschooling. Due to a distinct dislike of the services available for disabled children in this school district my husband and I have decided that homeschooling is by far a better option for our children than anything else available right now. Don't get me wrong, I really enjoy the small farming community that we have joined, it's just that some of our needs for the children are not met within the current school system. Aleksey is now 6 years old and learning to accept something like a routine (being homeless in the desert for 2 years will make routines go out the window!) and Elijah is now 5 and we are battling the "I know everything" attitude that comes with this age.
Health-wise, I am doing better than I have been in a long time, despite developing epilepsy. My husband feels that things are stable enough for him to finally seek a part time job. We haven't had that kind of stability in over 5 years. It's an amazing this really, how far we've come as a couple, as parents and as individuals. We've faced more struggles than I feel is fair for our lifetime, and here we are, defeating each and every one of them with grace and strength. Now if I could only stop smoking.
Also, there will be a focus on homeschooling. Due to a distinct dislike of the services available for disabled children in this school district my husband and I have decided that homeschooling is by far a better option for our children than anything else available right now. Don't get me wrong, I really enjoy the small farming community that we have joined, it's just that some of our needs for the children are not met within the current school system. Aleksey is now 6 years old and learning to accept something like a routine (being homeless in the desert for 2 years will make routines go out the window!) and Elijah is now 5 and we are battling the "I know everything" attitude that comes with this age.
Health-wise, I am doing better than I have been in a long time, despite developing epilepsy. My husband feels that things are stable enough for him to finally seek a part time job. We haven't had that kind of stability in over 5 years. It's an amazing this really, how far we've come as a couple, as parents and as individuals. We've faced more struggles than I feel is fair for our lifetime, and here we are, defeating each and every one of them with grace and strength. Now if I could only stop smoking.
Tuesday, February 21, 2012
This blog is going to take a new turn...
I've had a hard time lately posting because I have either been very ill or busy with my kiddos. Since my last post, my sons have been diagnosed with Autism (Aleksey) and Aspergers syndrome (Elijah). For the foreseeable future, this blog will feature mostly my trials and tribulations as a disabled mom with 2 "differently-abled" children.
Monday, October 17, 2011
Surgery tomorrow
Tomorrow I have surgery for a fistula placement. This is essentially is super-vein that can stand up to being poked. A lot. I have to admit, I'm nervous about the operation because I will be under General anesthesia and the last time this happened I was in an amazing amount of pain for a while afterwards, and they had forgotten to give me a pain pump. I am taking steps to make sure that this does not happen again but I'm still leery. I've never had a fistula mature, ever. *sigh*
I am enjoying my chocolate pudding and my ginger-ale, because in 5 mins, I will not be allowed to eat or drink -anything- because of the surgery. Wish me luck!
I am enjoying my chocolate pudding and my ginger-ale, because in 5 mins, I will not be allowed to eat or drink -anything- because of the surgery. Wish me luck!
Saturday, October 15, 2011
In the hospital again
After a long week of trying to convince my dialysis nurse at the clinic that no, wearing a mask is important when your opening up someone's chest catheter, I am now hospitalised with an infection in my blood. This is very familiar to me and I'm not liking it AT ALL. I'm afraid that I will wind up just as I was last year with no hope and in the hospital for weeks on end. The vascular team keeps putting off redoing my AV graft and now they can't touch me until this infection is gone. That can take up to 6-8 weeks!
Thankfully I have a dear friend staying with us that is helping us to keep things straight and the house on some kind of routine. The boys also have their therapists now which is also making things easier.
I'm going to try to get out of this clinic before they kill me, but they are making it difficult and I'm not sure I can work around their hoops.
Thankfully I have a dear friend staying with us that is helping us to keep things straight and the house on some kind of routine. The boys also have their therapists now which is also making things easier.
I'm going to try to get out of this clinic before they kill me, but they are making it difficult and I'm not sure I can work around their hoops.
Saturday, October 8, 2011
Huge update and a promise
OK so once again it's been forever since I've updated. For those who have been following along, I had an AV graft put in last November, almost a year ago now. Unfortunately, about 3 weeks ago it clotted off after I had a hospital stay battling a disease called C. Diff.
So, back it was to a chest catheter and all the attendant dangers of it. When I was released from the hospital after it was put it, it was already showing signs of not wanting to work. 2 sessions at my clinic later and it was not working again and back to the hospital for me. During the in between time, I was diagnosed with Lupus and Fibromialgya and had been experiencing a terrible flare of both at once. I could barely move. When I was admitted this time, to once again replace the catheter I took a fall when I was transferring from the transport chair to my bed after a test. I heard a terrible *crunch* and I couldn't get up. My spine as given up. It was the consistency of pancake batter. I was then given a walker to walk short distances with and a wheelchair for longer distances.
When the physical therapist came to see me at my home, they confirmed that they don't really want me out of the chair for much of anything. My strength is nothing and my balance is worse than that. So, I now see physical therapy in my home 2 days a week an and occupational therapist who is helping me to learn how to maneuver myself around. Honestly, I'm not upset although most people expected me to be. I have more freedom of movement and I'm in less pain over all. The biggest hurdle we have to get over is how do we modify a 3 story home so that it's mostly accessible to me? The stairs leading to the outside are the biggest issue but have the clearest answer: Build a ramp. So I am making jewelery and things to sell on Etsy all of the proceeds go to my having the materials to build a ramp.
If you wish to purchase something from me please visit my Etsy Store
And now a promise. I will update this blog once a week at least.
So, back it was to a chest catheter and all the attendant dangers of it. When I was released from the hospital after it was put it, it was already showing signs of not wanting to work. 2 sessions at my clinic later and it was not working again and back to the hospital for me. During the in between time, I was diagnosed with Lupus and Fibromialgya and had been experiencing a terrible flare of both at once. I could barely move. When I was admitted this time, to once again replace the catheter I took a fall when I was transferring from the transport chair to my bed after a test. I heard a terrible *crunch* and I couldn't get up. My spine as given up. It was the consistency of pancake batter. I was then given a walker to walk short distances with and a wheelchair for longer distances.
When the physical therapist came to see me at my home, they confirmed that they don't really want me out of the chair for much of anything. My strength is nothing and my balance is worse than that. So, I now see physical therapy in my home 2 days a week an and occupational therapist who is helping me to learn how to maneuver myself around. Honestly, I'm not upset although most people expected me to be. I have more freedom of movement and I'm in less pain over all. The biggest hurdle we have to get over is how do we modify a 3 story home so that it's mostly accessible to me? The stairs leading to the outside are the biggest issue but have the clearest answer: Build a ramp. So I am making jewelery and things to sell on Etsy all of the proceeds go to my having the materials to build a ramp.
If you wish to purchase something from me please visit my Etsy Store
And now a promise. I will update this blog once a week at least.
Friday, August 12, 2011
So lets see...
Ok, Ok I know ti's been a while. Since we last spoke they have closed and then re opened the living donor program and my kids have been put on Gluten and casein free diets. I've been doing OK with dialysis since the graft and I've dropped out of school in order to be at home full time while the kids have their therapies and doctors appointments. I would say to look forward ot more postings by me, but we all know how that works.
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