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!!!
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