Day of results

Good Afternoon, Everyone! Today I finally received the answers of the MRI.  I had to wait due to the snowmageddon that we had a few weeks ago. Thanks for hanging in there with me waiting on the results.

The day started off as usual with my husband and I doing our morning dance around the bed, down the hallway, and down the stairs. It was a tough start; my legs finally got into the groove of doing things on their own by the time I reached the bottom of the stairs. I got myself ready for the doctor appointment, then we were off.

The doctor said that I will be doing aqua therapy, walking therapy for six weeks. He did, however, mention about surgical procedures with pins and rods. Not the type things you want to hear all in one sentence. The doctor went on then discussed what he saw with my hips in the MRI when they did my back. "Invisible Woman", need I say more??? Does that tell you how bad?? He said, "Arthur Ritis" (arthritis) is heavily throughout my back and hips they are very badly deteriorated. He talked about injections as well as pain medications.  The one that I currently am on (Gabapentin)can go as high as 3700 mg daily. My doctor upped my medication from 300mg to 400mg. He said essentially I am headed for walker then wheelchair sooner than I probably can imagine. This is something that I really want to put off longer, but I realize that I need to pay attention to the needs of my body. The Osteogenesis takes over and we just have to survive the best that we can.

When the doctor told me to push up with my hands my wrist snapped really loud; it really hurt. He then pushed on my legs, my left one I couldn't stand when he pushed on it. I reacted by pulling it back which surprised me that I even felt it. That leg has been messed up since I was a teenager, but to feel anything today really surprised me. The pain was intense. 

My emotions are running high, fear is running high even though I know God does not give us a spirit of fear as you will see in the verse that I am about to give you. The verse is found here in II Timothy 1:7 "For God has not given us a spirit of fear, but of power and love and of a sound mind." This is a verse I have memorized and have used several times in my walk with Christ. With the journey of OI in my life, there is so much that goes on that no one sees. There's a lot of things within our hearts that are hidden from family and friends. Not that we feel they doon't need to see, hear or know. It is just that we do not want to burden our families with the needs that we have. We don't want them to feel bad for us. We do not want them to feel burdened by our needs. Just like now I am thinking of my family and what a burden that I could be with this. I am holding in my thoughts in many ways. I haven't really talked about it with my husband as of yet even though he went with me to the appointment and heard all that the doctor said. I so many times think of Heaven and going there yet, my husband and my son are here and I couldn't leave them. I know if God calls me home I have to go. I know that God would protect our son and my husband. I get so frustrated to feel like things are out of control that I cannot do anything to change or help the situation. I feel like I want to give up. Today I am emotional I sit here and so many thoughts go through my mind. Do I tell my friends, do I keep it inside and go on as though nothing is wrong? Do I not show or tell my family how I feel??

I don't know which way to turn at the moment. I pick up my Bible look at it then put it down, I pick up my journal to write- put it down, I pick up my book then put it down, I pick up my phone to write friends I put it down, I pick up the phone to call my parents- you're getting the idea. Yes, I put the phone down. I didn't even dial the number. I picked up the phone a second time to call my Pastor then I said no can't do that he's eating supper with his family. Not a good time to call him. You know I probably would say the same even in an emergency.  I know, then would be the time to call him, but I would probably still think no I am interrupting him. I thought about calling my best friend, but then I didn't call her. 

I must go for now. I have to try to make supper even though I am not really in the mood to cook right now with all that I learned today. I will be making a fun family movie type supper. I am making chicken pieces and crispy fries with my family famous barbecue sauce that I spoil my best friend with when she comes. She always begs me to make it. Haha, I will laugh so hard if she comes over with chips or something she wants to dip into the barbecue sauce just to make me make it. 

Thank you for reading; taking time out of your busy day to stop by!! See you soon!! 

Hard Dance this morning

Good Morning!! This morning was very difficult. I had a difficult time getting up this morning. The pain was severe. Standing was difficult; taking that first step was difficult. I was not sure I was going to stay standing. The dance with hubby through my tears continued until we reached the bottom of the stairs, then across the kitchen to my office where I could get ready for the day. My husband helped me with getting around until we felt that I was ok to be on my own.

I have to say that with this pain through my body it really makes me feel like quitting, giving up, walking away from things. I feel like I cannot continue the battle. I know the Lord gives the strength to fight these battles. He's there through my pain, through my difficulties of getting around. 

I have my follow up with the MRI on the 31st so I will find out our plan and what we need to do. 

I hope you all have a wonderful day then soon it will be weekend time. Have a great weekend spend time with family. Great making memories. 

Thank you for stopping by, 

Rise and Shine!!!

Good afternoon everyone! Hope you're having a great day. This morning's dance was a bit tougher as in the night I moved and experienced some sharp pain. When I woke and took my first step from the bed I almost went down. When I reached the bottom of the stairs I was finally beginning to walk alone, walking across the kitchen was a bit of a struggle, but I made it across. I found the things I needed to get my day started. I got ready then woke the family as they requested. 

I can say that many thoughts went through my mind. The pain that I was experiencing and waiting almost impatiently for my next dosage of medication; I wanted to give up. I knew I couldn't because there was going to come a day when giving up will not be an option. My dear friend and I were out on a mission to grab some extras for supper. As we were walking into the store I mentioned that my doctor mentioned "wheelchair". I told her no I am not giving in! I will not go to a chair. My friend's statement was "so you're going to run yourself into the ground..." Okay, so I may not have it all correct, but still, hear me out. With the OI we know that it is inevitable that we will one day live our lives out in a chair if we are not in one already. This is something that we will always fight. We do not want to be in a chair, we want to show our strength because we fracture and deal with other physical issues on a daily basis.  

I know for myself this is real for me. Moving, lifting, doing anything from typical household expectations, anything.  I know my strength comes from the LORD. HE keeps me on the path to stay motivated, to stay strong, to stay focused. I look forward to the day that when I am in Heaven that I will have no more pain, no more OI, no more back issues.  I will be whole not broken and fractured like I am now.

Thank you for stopping by,

Good Morning for Dancing....

Good Morning!! Hope you have a wonderful day! What a day! Today when I rose from bed the pain was still there, but not as bad as it has been. I am so thankful for that. My husband heard my alarm; greeted me with these words, "Is it time for our morning dance?" I replied yes, it  is. We got up and started our dance. I am glad the pain wasn't as bad this morning; I am glad that I had my husband to hold as we left our room and down the hallway. He helped me to the stairs; I was able to descend a bit easier this morning.

I met our son downstairs him greeting me as I entered our living room. I love his sweet words. "Mama, I am going to get my clothes and I will be waiting for when you get out of the shower. Do you need anything?" How sweet of him. I love how he cares for the needs of others.  

This weekend was a very special one. We had a baptism in our church. Four of our teens in the church have decided to move forward in their faith taking baptism as their next step. We as a church will be coming alongside them to support them, to pray for them, to mentor them as they grow. We had a celebration lunch for our son - thank you Grandma and Grandpa House for taking us out to celebrate.  We look forward to your next visit.

Today I will be talking with friends about OI and what they feel during the day. I hope to encourage many. This is a difficult disease to deal with daily. There is so much that goes through your mind. You may feel like a burden to your family because of how fragile you are. We may be stronger at other times, but again as I have mentioned before fractures happen so easily with us. I find myself thinking twice about doing things. I know I shouldn't, but with this disease, I can't help it. I say that because I seem to have been fracturing more easily recently.  

I don't know what my day has planned for me as of yet, but I plan to re-pot a plant. This one is a special one as it was a plant my Father had before he passed away. I hope the weight of the current pot doesn't cause an issue with me. I want to turn it from a floor plant to a hanging plant. Well, I better get going if I plan to get things done.  I will try to post pictures of the plants when I am finished. Yes, I said plants because I  have an idea for another.  We will see how that goes. 

Thanks for Stopping by,

Good Morning!!!

Good Morning Everyone!! Hope you're having a good morning. My day yesterday started out as usual; the morning "dance" to get moving, love walking with my husband. We went to our church and were blessed that our son took a step of faith in his walk with Christ to move forward; he was baptized. So very blessed. I know he was excited. We were then blessed to celebrate with an outing to lunch to celebrate with his Grandparents. He was able to choose the restaurant that we went to.  The waitress serving us learned of the reason of our celebration and made the day even better. 

I later went to our Mom's group. The time there was nice and exactly what I needed. I left feeling very encouraged.The group was small; three of us there and I  appreciated the words from them. They did not know the events between church in the morning and lunch. I know some may say what was the point of even meeting, but I have to say that it was perfect. We each were celebrating that our children took the next step in their walk with their faith. Between the three of us our four children were baptized and their testimonies they shared you could feel them from the heart. I as Baptism Steward was so blessed to help them as they came out of the water and congratulate each one. I loved seeing the expressions on their faces that each one of them were very proud that they took this next step. You could see the impact of the baptism in them; they had smiles as they came out. I was so happy for them. I am blessed to know each one of them. 

My day was a little rough between the morning service and our lunch celebration to going to the extremely rough after our Mom's group. My night you could say ended wretchedly. I felt very discouraged. My night ended in tears, however, I have to say that I was blessed that my husband was there to lift me up, hold me through my tears. I also have to say that I am blessed that my friend too was there to encourage me through my tears in the way that this one was demanding, irrational, selfish, inconsiderate and completely unacceptable. My dear friend said to me "I will pray for you" then she sent me a picture that said "you need a hug" ...I am so thankful that she was there for me. Thank you my sweet friend, love you.

This morning we had our "dance"....I love my husband so much. As we were walking this morning he said "I'll dance with you any day, all day." I loved it and I am thankful that God brought him in my life. He helped me through the hallway and followed me down the stairs making sure I was able to get down. We made it to the bottom gave him a kiss, then he went back up to rest some more before beginning his day. I hope today goes a lot better than last night.

I will try to write more later as I can. Thank you for stopping by. Have a good day!!!!

Thanks for reading,

Saturday Family Fun Day!

Good Morning!!! Hope everyone had a good night. My night was an eventful one; I was up and asleep again...the pain woke me...I felt a pop and that woke me. I didn't know whether to reach over to my husband and tell him I may have just done something. I decided against it; waited to see when I tried to move if I felt pain or no.  I didn't so I let myself drift off to sleep again. My husband woke at 4:30am, he got up, went to his office and did some work.  I woke to my 5:30 pill alarm took the medications then drifted off until 6:30am. I texted my husband because I noticed he wasn't back in bed....hmm, texts don't work well in reaching someone when they leave their phone on the nightstand next to the bed you're in.  I called him on the intercom; he came in and helped me up. The pain was a bit much, the leg and hip didn't want to cooperate. I didn't know if we were going to succeed in getting me up and about. I trusted him to hold me and I trusted God to get me moving. I thanked God that I was up. So much more to thank Him for. I finally got downstairs, hubby returned upstairs to get the few things that we left behind just to get me downstairs.  He put them on the table next to where I'd be sitting then returned to our bedroom for more R&R as he said.....love that military side of him.

Anyway, I am downstairs got myself ready then began time with God. I love my quiet times. I then was greeted with message from my sweet friend Shawn.  She and I just met a few months ago...our friendship is growing. I have to say like all friendships, relationships...there are bumps in the road, but you know what God is stronger than those bumps...He will get you through those bumps, differences whatever they may be. He's done that with us. Yes, we may bump heads not agree on how something is said, but rather than attack one another we simply say something like "did you mean?....... then state it" this way we don't feel "attacked" "put down" "wronged" "hurt"... this helps us to grow as friends. I love Shawn and her daughter. They're great!!! I pray for them and especially now as they are an adventure...surprise weekend together. I pray that they have lots of fun and I get to see them when they return.

While in my quiet time my Pastor's wife sent a message to our group with some songs. I will add them here so sit back and enjoy some good music.  The first one is by Matthew West, "Motions" This is about his challenge with vocal surgery...but in his time of trial God proved in Matthew's story that He's at work even in our weakest moments.  Here is the video on this song. 

 

Another video that my Pastor's wife shared with me was this one by Mandisa, " Unfinished". Here take a listen to this one.

I hope that you like this one as much as I did.  I really paid attention to the words...especially the part of picking myself back up. This is something that those of us with OI have to do daily. Yes, I know everyone does, but when you face medical challenges that making doing simple things that many of us take for granted; picking ourselves up takes on a different meaning.

There is one more so bear with me here ... I know this may be overwhelming you or you may not want to listen to the music that I'm posting that's ok. That is your choice. This one has an impact on me as I had been dealing with a debilitating chest issue for over 10 years. The many challenges that I faced on a daily basis....even trying to play with my son, helping my son with getting ready, doing anything, even playing a game with him sometimes was more than I could handle. That really messes with you inside when you cannot do things with your child because of a medical issue that you're challenged with. This song is a great one to get us through....take a listen......

Have a great day everyone! Thanks for stopping by....leave a message. I will respond back. Take care!!! Have a great weekend!!!

Blessings,

OI Awareness Week!!! We need everyone to help us with this.....

Hi Everyone! This is a serious matter....yes we have a Wishbone Day, but not many are aware of it other than our OI community.  We want to raise awareness within our states. You ask how can you do this...this is how click this link and follow the instructions.  Here is the link....OI Awareness Week; click the words "OI Awareness Week".  You will then be directed to a page with the following at the top....

We need your help to officially proclaim OI Awareness Week in every state!

Requesting a proclamation is simple!

1. Click on your state below.

2. Upload the drafted proclamation letter template found here.

3. Fill out any additional information required per your city or state.

4. Send an email to dcymber@oif.org to let the OIF know that you have requested a proclamation!

5. Once your state proclamation is accepted, send out a press release to your local newspaper. 

From here you will then select your state and fill out the information and send an email back to dcymber@oif.org.  Thank  you for all your help. I really appreciate anyone that can help get this week for us to raise awareness about this serious disease. 

Thank you,

Good Friday Morning!!!

Good Friday Morning Everyone!! I had to say that I am so excited this is the weekend coming up. I love the weekends because that means spending time with my loving family. I don't know what we have planned as of yet. Usually we have things planned, but with the snow days we had this week we did a few things then. This weekend our son gets baptized. I am so excited for him. I am proud of him in that he's looking forward to this next step in his faith. He, like us love our LORD. 

This morning was a little better, but still took ten minutes to get downstairs. The alarm went off as usual. I moved in the bed to get ready for my husband to come to the side of the bed; "pop" it was loud and clear. My husband heard it, said what was that? I said my foot. Which one he says? I said the right one. Is it ok? I don't know, it kind of hurts. I moved to get in position to get out of bed; tried to get up on my own - did not succeed. I fell right back to the bed. He says why did you try to get up? I told him I thought I could, thought my legs were ready. They weren't soon as I got up like I said I fell right back to the bed. He helped me up, the pain in the hip and legs was not as bad as yesterday. I am thankful for that, but still pain that had to be addressed. We stood together for a few minutes so I could get my bearings then we began our "dance" as he calls it now. How sweet to make a positive out of something that could be so very negative. We "danced" out of our bedroom and transitioned to the hallway. We started the hallway, things seemed like going better then things changed my right leg gave way on me when I took a step when we were about half way.  Scared the two of us. He asked if I was ok - I replied "I don't know, I don't know what happened. That was scary." "Scary!", he says. "That scared me!!" He then says, I love you, but don't scare me like that especially at this hour! I don't blame him, I realize he was trying to make a little light of the situation - I appreciate that because if we dwell on the negative - the scary things that happen unexpectedly - the fractures that happen out of nowhere - the cracks of bones - pull of ligaments and tendons - the pulls of muscles or other issues that occur with us we'd be in a really sorry state. So put on a splodge of happiness, positivity, strength let's face our day!! I will be putting my splodge on with the Word of God - this is where I draw my strength from, I draw my strength from the LORD, from my beautiful friends like Keith, Shawn, Duc, Goose, Laur, Missy, Bev, Abby - many others. I draw strength from my husband and son as well. I give strength to our son as he faces the same challenges in different ways with OI.  I cannot say enough about the Word of God....God directs me through the scriptures to what I need for my day. I love that He does this for me. I truly do. What could be a discouraging day can be turned around in a big way when we go to the throne! I go to my Lord daily. 

Thanks for stopping by....come back again. I will try to have more about OI as I can put things up for you. Time to get started with the day...Have a wonderful day everyone!!! 

End of the day

Hi Everyone! Hope you had a good day. I enjoyed the sunshine today after spending two days with "Snowmaggedon" as we called it. It's a nice change of pace of things.

Today I celebrate 28 years of marriage today with my high school sweetheart. I love him so much. We had a nice celebration dinner, with our son. Seems like that is tradition with us. I recall two times that we didn't have our son with us one before he was born when I was carrying him and one after he was born.  Soon it became a tradition for us to bring him with us. We make it a family event.

I spent most of the day downstairs. I was trying to do little things as I could. I did some dishes and put away the ones that went in the cupboards above the counter. I made lunch for us, then my husband came and he made soup to go with our lunch. After lunch he went back to work. I went to the living room to do some reading. It was kind of dim in there even though I had the window open.  I reached to turn on the light in the living room; I felt something funny with my finger. I felt and sure enough I did something. I have to be careful with it now. I just buddy taped it to my other finger for now. I am not wanting to go in just to hear "Yup, a fracture. Let's splint, or Let's cast it." I didn't want to ruin the day for my husband so I didn't tell him what happened. I tend to do this often because with the ease of how easily it is for me or my son even to get injured doing the simplest of things. Sometimes I will hear my husband say "What??!!!! Again!!!!! What did you do???" I know he doesn't mean it, but sometimes just the tone of his voice or the look on his face looks like he's upset that I am hurt again. I move in my chair and I hear cracks in the spine more today and the shoulder blades. I am waiting for something to break. I have a feeling something is going to the way it sounds.

The life of OI is difficult. With what I just told you is typical of my day. I do something then I am afraid to say something because it seems never ending. I realize we all get hurt at times, but it's not pretty much a daily event with most people. The thoughts that go through our minds, are things like how much a burden we are on our families, our children. I feel that with some things that I have been through I haven't been the best Mother that I could be to our son. I had an issue with my chest that started before our son was born, but got worse by the time he reached the age of 2. I went through numerous doctors, hospital stays - weeks at a time, tests, more tests, surgical procedures to have them come up with their best saying, "I have nothing for you; I can't help you." These are not words that someone wants to hear. This continued for over a ten year period. I felt that I failed my husband as a wife, our son as a Mother.  I know others and friends of mine would tell me differently.  I really wish that I could have done so much more with him. I am healed from the chest issue God did amazing things with my life.

I have to say that our lives are different now that our son and I have been diagnosed with OI. We have to plan things and do things differently so that we don't fracture. I have to say this has been an adventure with lots of challenges. In some ways I am glad I didn't find out until later that I had OI. Why you ask is because I probably would have been identified as that overprotective parent that doesn't let their child do anything. Well, while I may have done some things as a child growing up that I wouldn't let my son do there are others that knowing that we have OI I still wouldn't let him do them. Yes, I did and some I did fracture and others I didn't, but still.  I have to say that my finding out until later, as this disease is difficult to diagnose especially when it's not always obvious. My choices in what I let him do and what I don't are easier. I wish I could say that with his school. They are hyper-overprotective. They don't let our son use the stairs, touch or open doors, they make him use the elevator. The other challenge with the school is they don't allow him to carry his bag; feel it is too heavy for him.  He does have an order with his IEP for double books. He's allowed to have a set at home and a set at school. The school had me come and pick up a book for him to have for one of his classes. This was not a good idea, but none of us knew it until it was too late. I was carrying his history book out to the car to take it home. The book didn't seem any heavier than most any other book I've carried. I guess for this day it was too heavy. I was walking out with a staff member and I felt a pull and a pop. I went over to the orthopedic on my way home; sure enough there was a fracture. I was upset, angry, frustrated....then it hit... how do I tell my husband that I fractured carrying a textbook???! How will he react??? I told him, he was a little upset, but he knew that this is something that happens. Well, our son's school found out and they overreacted with me too. Now I am not allowed to touch, open doors and I cannot use the stairs. I feel this is overkill, but until they get used to us we need to comply.

Well, I think I have gone on long enough.... have a good night everyone! Time for me to try to get upstairs to bed so I can get a head start on my day tomorrow by being rested to start. Let's hope waking up is easier tomorrow than it was today.  Good night everyone!

Rough Morning.....

Hi Again!! I know not long since I wrote this morning, but I wanted to write again. The day started as usual 5:30am. I had my husband come to my side of the bed to help me up. I went to stand and down again I went. I couldn't stand. He helped me up again. We stayed where we were for a few minutes then we began to go out of our room. The struggle was difficult this morning. We had to stop a few times because I couldn't stand and walking was difficult. Finally we were in our hallway...the progress was slow, but steady now. We got to the stairs so I could begin my descent down the stairs. He stayed by my side to help. I began coming down, by the time I reached the bottom I could walk on my own by then. I finished with getting ready for the day. Our son was off to school. I had a few things to do here, but still had to take it slow because of the difficulty in walking. This has been a challenge for me as of recently. The pain throughout my body has been difficult. The hearing of bones cracking when I change position has been difficult to listen to. I hear the sound and pray that there are no fractures. This is something that I hear often.

Hoping to get some things done today. Have calls to make for the doctors and the pharmacist. Have a wonderful day everyone!

Good Morning!! Anniversary In The House!!!!

Good Morning!!! As the title says there's an anniversary in the house! Yes, ours. We met 36 years ago at our high school. My husband had been attending since he was in 7th grade. I began attending when I was in 10th grade. We met when we were in 9th grade. How rude of me, our school that we attended together is Faith Heritage School located here in Upstate New York.

We were married at ages 21 and 22. I know so young, but we were so in love. We also had to kind of rush things because my husband to be was to be deployed. We got married and three days later he was deployed.

Our ceremony was beautiful. We loved that all our family and friends could be there for us. We had some mishaps during the ceremony, but what wedding gets off without a mishap or something not going as planned. Everything was starting out smoothly, but then it happened. We were about to light the unity candle and it decided that it was not going to be lit. I say that because our maid of honor purchased our unity candle as a gift. She placed it up there on the altar to surprise us. We loved the candle. Time to light the candle.......hmmm, what's happening? Why can't we light it?? The wick is nowhere to be found! It's shaved clean! Thankfully our Pastor is well equipped with extras, hehe. I say that because he pulled out a pocket knife! A pocket knife!! He started digging to find the wick. He said "Try again".....we tried and no, the candle still was not lighting. He digs again...we try and no we don't have light, lol. He turns to the side digs again. He says, "Ok, now let's try this again, it should light now." No, this candle was very stubborn it still would not light. Now, he grabs the candle, I let out a giggle. He turns all the way around and begins digging at the candle again. He places the candle back down tells us to try again.  We tried.........we have success!!!! It's lit!!!! Here is a picture of us with the mischievous candle.

Have a wonderful day everyone! Thanks for taking the time to stop by!

Osteogenesis Imperfecta: What someone goes through on a daily basis

Hi Everyone! Hope everyone is doing well. We are trying to survive "Snowmageddon"; we've had two days of snow storms.  Many things have been shut down, travel bans not much is open. The snow is still falling. Well, I am here today because of a special friend of mine. She wanted to be able to understand, help, know what to do with someone like me that has this disease. It's hard to understand what our thoughts are, how we feel, how we deal with every day things. How we feel when someone says "I won't hug you, I don't want to break you....I will kiss you though." This is something that is very difficult for me. I guess, it's because we that have OI are people too. We need hugs just as much as anyone else. Granted you don't have to give us bear hugs, but a hug is something special for us.

I'd like to open this with that I love my friend. I am in no way putting her down because she doesn't understand this disease. I say that because when we mention this disease to many even in the medical field we get the deer in headlights look. Yes, seriously we do. We get "I've never heard of that? Is that contagious? Is it something that you can be cured from?" Not many have this disease the disease is that rare. Another thing that gets annoying is that when we get around people, some the medical field and they notice our eyes. The eyes you say, some of us with OI have Blue Sclera. You say what's that? Well, that's when the whites of the eyes are blue. We become a "freak show item" as I call it. I say that because when someone notices they say to someone else "check this out!" "can I ask if so and so can come look? They've never seen someone with OI; they've never seen someone with eyes like that." When we're in the hospital setting it's a constant flow of people coming to look. I went for surgery for my chest and I lost count after 57 people came in and out of the tiny room I was in. It was getting old. I was getting really bothered that they kept coming and bringing more and more people. 

Now to get started. OI = Osteogenesis Imperfecta.  I should have clarified that in the beginning. I do apologize. Osteogenesis is a systemic connective tissue disorder. Although in short it's better known as "Brittle Bone Disease." We have a connective tissue abnormality that is expressed in many organs besides the skeleton. A care plan for us is a complicated one as we need one for not only musculoskeletal concerns, but the non-musculoskeletal issues as well. Pulmonary issues are the major cause of death in adults who have OI. Lung tissue is affected in every type of OI. We are more susceptible to respiratory infections and other breathing problems. Other issues that can become more serious as we progress through OI - progressive hearing loss, development of heart disease, valve disorders, hypertension, kidney stones, chronic pain, gastrointestinal complaints, dental issues, spine curves, obesity, and craniocervical deformities as basilar impression. With medical procedures involving anesthetic we are high risk.

Ok, now with that all out of the way. Just a peek in my day.  When I get up in the morning I am not able to get out of the bed on my own. I have to have help. Once I am up, I have to stand still until the pain subsides from my back, hip and legs. I cannot let go of my husband yet, because I cannot put my one leg on the floor. After a couple minutes I am able to put the leg down and begin to walk. Now, we start to walk out of our room. He helps me down the hallway and down the stairs. When we reach the bottom I am usually on my own to walk by then. I get myself ready for my day, for whatever it may bring. While I sit, do things around the house, do things with friends the thoughts begin. Will I be able to do what I need to do?? Will I be able to go with my friends, will I be able to do what they want to do?? Will I have to decline reluctantly because I am unable to do what they want physically.  Will I have to decline because there's high chance that I can be injured. 

When I am doing things with friends, by myself or with family things happen sometimes. Things we didn't expect. Sometimes, even recently experienced fractures and cracks in bones without any trauma. This really does things to your mind. You get frustrated, angry, feel like a constant burden; while these may typical feelings of other illnesses. I understand that, but times we feel afraid to move and do things because we don't want to get injured. I have made lemonade for my family something that one does without thinking. I opened the new bottle of lemon juice heard a pop didn't think much until the pain set in. My hand swelled, started turning colors of the rainbow...yea, I knew I did something then.  I went and sure enough there were fractures. Lemon Juice 0 Me 3 fractures. Oh yea I was upset. A simple object could do this to me, doing a simple task. How???? Just like the recent events in my life with my ring finger, middle finger, index finger and left elbow. I was enjoying my Sunday at church looking forward to going back for youth group with my son and I going to the Mom's group. I was there things were ok, he had a great time as did I until we got ready to go. I felt some pain in my hand. I looked didn't see anything at first, then I turned my hand over and there it was my ring finger all shades of purple. How fun, not! I went home showed my husband and we were off to get it looked at...there were four cracks in the finger. They asked when I got there how did you do it? My reply, "I don't know." The medical staff looked at me like I was on something. Oh then it came...how do you not know what you did? Look at that color! I repeat I honestly don't know. They took x-rays and there they were the four cracks, and a fracture at the base of the middle finger. Again the questions. Please stop asking when I say I don't know. They splinted the fingers. I tell them while they are there because someone touched my left elbow when they went past me "Careful, that arm has been hurting me." They touch it then said we better x-ray while we have you. Hmm, Yes, they discovered three cracks in the elbow. Now they send me across the hall to get special splints. Now, I go home to "lick my wounds" as some say. I follow what they say far as the splints; only removing them for showers.  I did this and followed up with my doctor after 10 days. I go back in thinking all is going to be well. I have the hand and elbow x-rayed again to find only more surprises! What?!!! The right ring finger has a fracture!!The fracture extends from one side of the finger to the other side. They look at me as though I didn't wear the splints that I was doing things that I shouldn't have been. I told them no, I kept the splints on, my husband verified.  They took x-rays of the elbow and hmm, yea there was two surprises there.  There was a fracture with separation and there were triangular shard looking pieces in the elbow. They asked what I did. I said nothing. The technician said the triangular shard looking pieces are caused by CPPD. This is another name for Calcium Pyrophosphate Deposition Disease. The crystal deposits provoke pain and inflammation. In time the joints break down, degenerate and in end; result in long term disability.This was difficult news to receive. I went back again because I felt pain in the hand after a week.This pain felt different. I went back to the orthopedic and we found another fracture. This one at the base of the ring finger on small finger side of the hand. I am so not happy with this news. I come home with my husband and I am writing in a journal the events of what's happened. I feel a pain in my index finger while using the pen...not really thinking that the pen is the reason of the pain. I continue writing there here comes the color and pop of the finger. We go back over and you bet --- there's another fracture. Uggghhh!!!!! Really?!?! Just from using an every day item!!!! A pen!!! Seriously!!!! 

Now this is where things turned.Things that many do not understand. When these injuries happened and my not knowing the cause with the exception of the one with the pen. I felt like I had to hide from everyone. I didn't want to speak with anyone. I withdrew from friends, from family, from my church family...even my own family. My husband and our son. They were getting concerned for me.My husband would tell our son, just love on Mama. She will come around. She's just dealing with a lot right now. 

There was an event at our church I really wanted to attend. What was holding me back you ask. Hmm, having a splint on the left elbow and one on the right hand. To you this may not seem like a big deal, but for me it was. How do you explain something that you don't know how it happened in the first place??? I was invited by a best friend to attend the event. I told her, I don't know. I don't know if I can go. I have been feeling like I need to avoid people right now. You know I have been avoiding you as well. I even felt like I needed to avoid my Pastor as well. My Pastor, my best friend thinks, then says he's one that you shouldn't be avoiding. He's one that you should be talking to right now with what's going on. He's there for you, for us as a congregation. I told her I don't know. She said tell him how you're feeling. He can help just as much as me. I did attend the event, but I was hoping that no one would say, "What did you do, we've been missing you!" Oh those questions and more hit me fast and many times. I wanted to leave so fast. I didn't want to be there anymore. I couldn't answer the questions because I myself didn't even know what I did to fracture or crack the bones for that matter. I then was dreading the usual comment that really bothers me. Yes, that one happened over and over and over and over. I think you get the point. Oh, you wonder what that comment was, well it's this. "I won't hug you, I don't want to break you." "I won't hug you I don't want to crush you, I will kiss your head instead."My best friend sitting next to me heard these comments and she shuddered because she was so afraid that I was going to say something because it was already difficult for me being there. She reached over to me saying it's ok, it's ok. She hugged me after. I shed tears. She and I talked. We went home; she talked to me on the way home and encouraged me to come to church that Sunday. This event that we were attending was on a Friday night. I was not really wanting to because that would mean that I have to come with splints on both arms. Really, do I want to get the barrage of questions? Questions of "What did you do?? Did you break again?? Did you fracture again?? Oh, my God!! What did you do??" Honestly, I did not want to answer any of these questions. The only response that I had in my hand dealt to me was "I don't know." How do you think that will go over?? Not good right? Exactly, they will be how do you do something to this extent and not know what you did. I did go, and yes the questions overwhelmed me. I was getting emotional, because how I was feeling when it all went down with the cracks and fractures. I had to get out of there as fast as I could. I didn't want them to see how upset I was.I haven't been back since. No, it's not because of how they responded to me. The reason is because I injured my back. The back injury just like the others, no trauma and I cannot tell you what I did to injure it.Most people woulds say things like "Oh, just deal with it, it's not that bad." "It's no big deal...you don't feel that bad really." I hate this last one that many say to me -- "Just suck it up." I am sorry, but the words I don't like.These are ones I get from people outside of my church.

I should end this here. I will write again as I can. I will try to make this as transparent as I can with the OI so that you that are reading can get a better understanding what we deal with daily. There is so much that goes on inside that he don't share with others because sometimes what they say hurts. We don't want them to feel hurt. 

I hope this helps you to get a glimpse into my life. Have a great night!!! Thank you for stopping by. Feel free to leave comments. I will respond as I can. Thanks again everyone!!!