Sunday, March 1
We need to embrace with contentment God's calling on our lives. The saying has the sense that we are to let God use us and seek to be fruitful wherever we are. He has great plans for us if only we will step out of our comfort zone. He will show us that it's ok and we will enjoy every moment.
Bloom where you are planted. It is an old statement, but there is a lot of truth to the words. I think, though, in order to truly bloom where we are planted we must be thankful for more than just the location that we call home; we must also be grateful for the circumstances and the seasons in which we find ourselves and learn to praise God and see His loving hand in both the good and the difficult things in our lives.
I say this because, I know in my own life that I have had some hard seasons and circumstances to deal with and face. I know without God I couldn't get through these. I would have fallen flat on my face, given up, threw in the towel. I didn't do that because I do have a relationship with Christ and my walk may not be the perfect walk, but it's the walk He has for me. I have had several challenges even recently as of this past December. I had a scare with the words "cancer". I do not have cancer, but right now I am one step away from it as my doctor said. We are doing treatment right now and I will be having a biopsy in April. I am placing it in God's hands because HE holds the answer, He holds the cure. I know we can do this. I have been doing what I have been instructed to. I have confidence, faith that we will be getting a good biopsy report.
As you may have read in past posts or even recent posts because we just had Rare Disease Day; my son and I have Osteogenesis Imperfecta. I could say that this has brought us down. I will say this however, it did drop me to my knees in the beginning. You may ask why. Our son is special needs and we have had a wild ride with his special needs. I say wild ride meaning we have had many things to learn about each one of them. We had to learn how to help him with processing things and just learning how to get through his day. Now with the Osteogenesis Imperfecta as part of his life and mine we could have let it control us and keep us from doing the things we love or want to do. We just do them with caution. We have learned how to put God into this and show Him praise through this. We show this through our unbreakable spirits. We may fracture, but we don't let this get us down. We keep our spirits up.
Grace & Peace,
Friday, February 27
I posted this picture of my son and I. We have both been diagnosed with Osteogenesis Imperfecta. This is also known as Brittle Bones Disease. We have a medicine regiment that we follow as well as we need to have infusions to help strengthen, build, grow and repair our bones. My son has had 9 fractures I've had over 100 fractures. Rare Disease Day is the day that we get to raise more awareness about our illness and bring more people, family and friends aware of this disease.
Today is a special day in the world of Rare Diseases; people like us that have been diagnosed with something that is not familiar to doctors. With rare diseases there's hospital stays, doctor visits, medicines, and just scary. I know you're saying with any illness or other disease there's hospital stays, doctor visits, medicines and it's scary too. With many other diseases and illnesses, the medical staff know how to treat what is going on and get you back to yourself. When they're faced with someone with a rare disease or cannot figure out what is going on with you that is when it's scary. The constant worry is there, will we conquer this, will we be able to control this and how? These are just a few questions that pass through your mind. Another is what is the treatment for this; is there a treatment? What will it be like? Will this make it worse or better? What do we need to be aware of; what are the side effects of the treatment? I mentioned above about the infusions that my son and I receive. He receives Pamidronate infusions. These infusions take a long time. Just a glimpse into a day with his infusions we go in early in the morning usually around 9am and don't arrive home again until around 5 or 6pm. They begin his infusions with a first bag of saline to prepare his body for the infusion this takes about 2 hours to go through, then they bring the Pamidronate; this one takes 4 to 5 hours to go through depending upon how quick or slow the drip is. This is then followed with a final bag of saline to flush his system this one takes about and hour 1/2 to 2 hours to complete. We then have to follow up again the next day to repeat this course of infusions again then we return again four months later. He doesn't have too many side effects to contend with. He sometimes will complain of headaches and upset stomach. The staff is quick to remedy this when he's getting them done. I then continue with his care when we return home. My infusions I receive are Reclast infusions. I was caught off guard with the side effects of these. I went in received a first bag of saline which took some time to get into my system then this was followed with the Reclast. This took some time as well to get into my system, but not as long of a day as what it takes for our son to get his infusions. I was feeling nauseous when I left. They gave me some things to help with that. I came home and took Tylenol as they directed me to. I was not ready for what I was to experience next. I began to experience bone and joint pain; at first it wasn't that bad. As the night went on the pain increased as well as the nausea. I continued with the Tylenol as directed from the infusion center. The next day when I rose from bed it was a huge challenge, the pain was intense. I felt as though I had be run over by a steam roller and left behind. It was excruciating; this pain lasted for 5 almost 6 days. I was sick for four of those days from the infusions. This is an experience that I will not forget for a long time. I will find out my schedule of infusions in May.
You then become over protective in situations depending on what the disease is. I know with our son we have to be protective in the choices of his activities. His nephrologist has said no activity with high impact or possibility of collision. Yes, you thought right! Wow!!! That takes him out of a lot of things. It sure does, but I am very grateful to his school for their awesome support through this. Thank you so much!!! I have been blessed with great members of staff and a great principal that has our back through this. He's been such a great blessing of support. He's lifted me up when I have crashed with being overwhelmed with all of this. I have to say something else about the staff there. My son has a physical therapist and an occupational therapist. These two ladies are awesome!!! I can't say enough about them. They're a great support team, they have helped our son very much in the many years that they've been working with him. They've even modified his therapy sessions when he's had a fracture. I love that they do that because he does need the therapy to progress and continue to strengthen his bones. His phys ed teachers are awesome as well. He has an adaptive phys ed teacher that helps and supports him in his gym time at school. When they learned of his having Osteogenesis many questions came at me. We worked with the doctors and they made things comfortable with me. I say in ways of explaining how the activities are done with the adaptive phys ed side of things. Typical games of things like soccer, basketball and others are different for the adaptive phys ed side. They looked out for our son in ways to protect him from fracturing again. Thank you so much!!!!
Also with rare diseases you feel alone, you feel the stares of others, the questions that come at you as if you are so very different from other people and you feel it. This doesn't make you feel comfortable. When you have to carry documents stating that you have this rare disease so that you aren't accused of child abuse with your child that you love and care only as a parent can. You have to have your husband carry documents as well so he's not accused of child abuse or domestic abuse because you too have the same rare disease as your son. This is so sad that you have to do this to protect yourself, you can't just have the support of people around you. Again to clarify our son has Osteogenesis Imperfecta Type 1; I have Osteogenesis Imperfecta Type 1, Type 4. I hope you will show your support either through a donation or in wearing your blue jeans for better bones. I can say that another thing you can do is this........I say compassion, because when we show our compassion toward ones like us with rare diseases it puts a smile on our hearts, gives us a lift to our day, helps us through some of the more difficult things that we face on a daily basis. Thank you so much for reading and stopping by! Have a wonderful weekend!!
Grace & Peace,
Saturday, February 7
Book DescriptionGreetings Everyone!!! I hope everyone is having a great weekend!! I received this book for reviewing. I wasn't at first sure how this was going to go, but then I started reading and got a different perspective. Generally when you think of fasting you think of a time period when you will stop eating and spend time with God. I have done it this way in the past. This approach is different. This one you only can eat vegetables, but then as I read further that you can eat fruit. You need to stay away from the processed foods and sweeteners. Basically, you are to eat vegetables, fruit, nuts and drink water.
My recommendation to you as well. If you have a special diet, nutrition plan that you are following because of medial needs then you should follow that. If you choose to take away anything from your eating plan do it safely and wisely. Do not put yourself at risk. I say this as I have Osteogenesis Imperfecta (Brittle Bones Disease); I was advised to increase my calcium through foods which I am doing. In this it wants you to eliminate dairy. I am choosing to eliminate different things to make the plan work for me. You can put this to your needs as well. I can say that the time spent with God has been great!
I would recommend this to you. I am now doing this through my church with great women of God. Thank you for stopping by. I hope you will stop again. I will have some posts soon of things I am in progress of making.
Grace & Peace,
Wednesday, November 26
I do have a bible which is dated for reading through in a year I like that this one isn't dated so that whether you pick it up today, tomorrow, next month, next six months you can and still get a great experience in reading through the bible. Always something new to learn, something new to read.
I wanted to say that I would recommend this to anyone that would like the challenge of reading through their bible in a year. This is for women, but I know there is another for leaders and a chronological one as well. This is in the NIV version of the bible; I go back and forth between a couple of versions. My theory on what version of the bible that one uses is one that is best understanding for them and that it is God's word. I for example use the NIV, NLT and ESV. I will however, somemtimes venture into the Amplified when I want some further details. I find that when I am struggling with things the NLT is the best one to get me back where I need to be.
Grace & Peace,
Wednesday, November 19
Hi again!!!! Did ya miss me?? Ok, now for the fun. I received a phone call shortly after my husband left for work from guess who? Yes, you guessed it from him. He called me to tell me that it was his bosses birthday. Hubby: "Can you make a card?" Me: "Yes, I can. What kind of card? For who?" Hubby:"For my boss, it's his birthday today." Me:" Today!!! Are you doing this again??? A last minute card?" You know I like challenges, but goodness dear - today???" Hubby: "Yes, today." Got to love the challenge right?? I know I like challenges. This is the card.
I cut this using the Cricut Expression 2. I cut the sentiment circle at 3" and the outer layer at 3.25" The card is 6"x 12" The inner layers are cut according to the previous layers. I then used the bakers twine for an embellishment and the button as well. The ribbons that are on the sentiment and behind the layer of the sentiment; I used the cartridge Party Picks and Pennants. I love that one. It's a simple cartridge but the options that you can use it for are exhaustive for many projects. Thank you for taking a look. Appreciate each and every one of you.
Thank you for stopping by!!!
Grace & Peace,