i will not be long winded today because i am feeling really crummy. i am blessed beyond measure by people who pray for me. and as crazy as it might sound to some...these prayers are what carry me through each day. lately i have not felt much like moving, but knowing that i need to keep going for my fam, and that others care enough to pray make me pick up my feet. the past few days have been difficult. i have struggled with terrible head and neck pain, and also chest pain with trouble breathing. last night was awful. to be honest i was not sure if my heart was giving out or what. by this morning i had no energy and my pain meds where not helping at all.
my mom drove me to the er to see if i could get answers. i had already written it off as a waste of time since most docs at the er do not know a lot about ehlors danlos syndrome. but i needed to make sure all was ok...or at least not life threatening. i guess you could say that is what i found out. but i feel even more weighed down with what i now know. while walking into er i could barely breathe and my legs felt like concrete. they took me back right away and hooked me up to the ekg machine. it came back normal, hooray! the doc wanted a chest xray too. he also ordered me some pain meds. the xray also came back ok. but he feels i am suffering from chest wall pain. (did a little research also called costochondritis) basically the cartilage connecting my ribs to my sternum are inflamed. there is no cure or way to fix it. pain meds and time can help, but it can come back. he said that docs see this a lot in eds patients. he also feels that i do have pots and wants me to follow up with both my primary doc and dr tinkle.
trying to process all this. i now have 3 chronic conditions diagnosed in a matter of months, and there is really no cure for any of them. pain management and surgeries may help, but reality is they are degenerative. i cry on my pillow trying to figure out how to be a wife, mommy, daughter, friend when it is painful to move. i try not to feel sorry but thankful for the gifts i do have, and the friendships that bring me true joy. i try not to cringe at the thought of using the cane laying in my van, or going to get the wheelchair tag for my car. and i desperately cling to some kind of normal in my life hoping that i can just push through it with out more pain. i really can't pretend i am ok anymore. those days are past, it is hard to even drive. i have to let the reality of this life in and quit putting on a mask of ability to do it all. do not take this in any way as giving up...just surrendering to a new life where i have to face the reality of my limitations. thank you as always for continued prayers and support of our family. love the beautiful relationships that keep my head above water!
A blog dedicated to my daughter Brooke who has Chiari I Malformation
I just want you to know I'm praying for you for comfort and directions. God knows our life's plan and you now just have to learn a new way of life it is not over it is just beginning. The journey is long but you will be well rewarded you look at life very differently. I was first hit with a disability at 21 I was a nurse and got hurt at work. I developed Reflex sympathetic dystrophy not a nice thing to develop. I was devastated but now I realize what a blessing God had in store for me. I didn't know at the time Stryker would have chiari eds seizures and finally mito a life shortening disease. Through Stryker I was dx with eds and the list of related issues. God allowed me to be home with my son when he needed it most and probably saved my body from a much worse injury. I'm so thankful that I have seen blessings come from such pain. One day you and Monica too will see the bigger picture of Gods plan. You ladies don't realize every blog you share touches others and lets others know they are not alone. Hugs and many prayers.
ReplyDeleteTiffany Reed