"There they are, the tears are back. I suppose its time for me to stop writing for now.
This is what I am hoping: ............................................................
That I will look back on this post, and laugh at myself, and scoff at the little lame and selfish soul that I was. That I will have so much love and adoration for the new little life that I cant imagine life with out it?!! That I will be so filled with gratitude for a Heavenly Father who "knows me so much better than I know myself"... as the Stephanie this morning just said..... oh to be her again.....
Wow, I break so easily!"
I copied this from the post I wrote the day I found out I was expecting my Whitney! (see below, it is posted) My Whitney! Oh my goodness how we love her! I adore her! I love holding her! I could hold her all day if I could. I snuggle my little cutie in my arms and try to soak in all of her! Her smell, her soft, squishy body. I kiss those little chubby cheeks a hundred times a day! I love her smile, it melts me! She is beyond sweet, she is so content to just be held and loved. I thank Him EVERY single day for her. I am so grateful that He went ahead with His plan for me, even though I was screaming at Him to make it all go away!!!!!!!! It BREAKS my heart to read the words that I wrote that day!!!! This little wish I made that day of how I hoped I would feel really did come true.... times a million though!!!! I do laugh at that girl who knew so little! I am ashamed at how I felt then! I was selfish and so naive as to how much I could love all of these family members he has blessed me with! I am, beyond words, so filled with gratitude to my Heavenly Father "who does know me so much better than i know myself"! This little hope came true. I cant wait to write and explain how it all came to be!!
Steph
Saturday, October 19, 2013
Cleveland Clinic
This is another post I wrote but did not publish.... wow, so interesting to read now!!!!
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November 22, 2012
We spent an incredible day at the Cleveland Clinic!!! Happy thoughts fill me when I think of that place! And spider man comes to mind too! :) (he was there, along with captain america!)
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November 22, 2012
We spent an incredible day at the Cleveland Clinic!!! Happy thoughts fill me when I think of that place! And spider man comes to mind too! :) (he was there, along with captain america!)
The greatness actually started before we even got there.
I know it sounds silly but after spending a lot of time on the phone with other Dr. offices/ hospitals/imaging centers, etc. this past year.... I was even impressed with their registration process. First of all they answer the phone by saying, "Hi! Would you like an appointment for today?" Haha! Their policy is to try and get you in within 7-14 days of your call! When they were trying to figure out which Dr. I should see, the man scheduling said that he was going to get a nurse on the phone to help us figure it out. The nurse suggested I see both, a neurologist and a cardiologist. They knew I was coming in from out of town so they switched some things around so that both appointments would all be on the same day!! Wow! :)
Debbie and Greg's sister, Emily watched all four crazy kids for us! We dropped them off yesterday, tuesday the 20th and then he and I drove over to Cleveland last night. We both were filled with so much worry and stress about the pregnancy. We worried that they wouldn't even be able to do any testing since I was pregnant! We called and told them our news, and they said that they would note it for the drs to see.
Here is an outline of our day for my own records:
November 21, 2012-day before thanksgiving
Here is an outline of our day for my own records:
November 21, 2012-day before thanksgiving
7am check in
7:15 EKG
7:45 Met with Dr. Shiavone, the cardiologist. He was incredible! He checked out every conceivable spot of my heart. He spent over an hour with us! That has never happened before! He was respectful, kind and above all else, he just listened!! He did not charge forward with any pre-conceived ideas. He took it a moment at a time and asked me questions to clarify! I am so humbled to have had such a caring Dr. !!! He said he could tell I was a runner, and that I was very healthy, and that my heart sounded perfect! He ordered some tests that were scheduled for later in the day. He mentioned that my pregnancies were the awfulness that they were because of a condition called POTS. Postural Orthostatic Tachicardia Syndrom. And that it could still be causing me issues now!!! I get to more of that later!
9:00 Dr. Shiavone had ordered some blood tests so we did those right there in the hospital.
10:40 Met with Dr. Wilson (at this point we did not want to see one more neurologist, we were sure they were all the same!) Of course though, Dr. Wilson was phenomenal! From the moment he stepped into the room we knew he was different because he was SMILING... (neurologists don't smile, they have to think super hard so they cant smile!! At least, that is what we thought after meeting all of the other neurologists! Haha). He said he did not want to read Dr. Shiavone's notes because he wanted to come to his own conclusions. He kept saying, "I want to hear your story, tell me every detail...." And so we did, we talked, he listened. He did is neurology tests there in the office and then said,"I think this is POTS! He got up quickly from the room, was gone just a few minutes and then came back and handed us a printout of the wikipedia definition of POTS. Greg and I read over it, and then just stared at each other in disbelief! Wow, 7 months of agony with lots of different medical professionals with absolutly no answers, and now we had spent just a few hours with 2 drs at the Cleveland Clinic and they had both independently diagnosed me!!!! Such a tender Mercy! We felt it in that Dr.s office! The feeling of peace washed over us! That He was going to help us, with the help of these Dr.s!
Dr. Wilson ordered a slew of blood tests (24) just to rule out all of those strange anomalies. Then he said, he thinks that my pregnancies were definitely to blame for POTS and that my numbness issues now are to blame as well. Further research will be needed so that I can understand this but... for now, just knowing what to research is exciting!
Dr. Wilson really is amazing! After spending more than an hour with us he said that he truly does feel that the POTS is causing the numbness on my left side. I am excited to research that..... ?? He said a few things that are so neat that are giving me tremendous hope! He said, " I dont think you have MS, actually, I think we can rule out MS......, No, Stephanie, you do not have MS!" I needed to hear that! It brought me so much comfort!! Dr. Wilson told us that he has a patient who flys in every few months to check in with him and that she is a runner! A runner who has POTS! He said she functions for the most part with ease, and that over the course of treating her for the past couple of years that she is now up to running 5 miles a day. He said that I should probably find other things to do other than running. He said that I will probably find other things that are more enjoyable exercise wise..... (He doesn't know me well enough yet, haha) Running?! The thought has me so excited that it might be a possibility! :) Dr. Wilson said that priority number one is getting me through this pregnancy healthy, then maybe, we can worry about running, or excising in general.
He gave me some great information to move forward with. He said that he does not want me to be on any drugs. Being pregnant is hard enough on my body so adding medicines that will throw other systems and organs out of balance would be bad! He said that one of the big antidotes to POTS is salt! Yep, salt! As much as i could handle. I explained that I throw up a lot when I am pregnant so he said that a constant IV is something that we need to look into so that I can get the adequate salt intake to increase my blood pressure. The other thing he said that would help is yoga. He said yoga helps to strengthen muscles without requiring my heart to work as hard as other exercises. He said that I would need to experiment with caffeine to see if it helped or hindered me? So we have good things to move forward with!! He wants to see me in February sometime for a recheck and then again after the baby is born to get a full workup....
12-5pm For the rest of the day we just finished up the tests that the Dr.s had ordered. I had a bubble heart ultrasound, a Stress test, an ultrasound to look for blood clots in my legs and a lot of bloodwork done!
It really was a great day. It was a total blessing being there. Its a special place. People were smiling as we roamed the halls and foyers and open areas of the hospital. When we checked into our different appointments and tests, every single employee seemed happy and kind. That is so rare!! I Love the Cleveland Clinic!! As I type this I feel overwhelmed at what I have before me, a difficult pregnancy, numbness, headaches and chest pain, after the pregnancy health questions... but we are so grateful that we are getting closer to getting healthier. The gnawing sickness that I feel is depressing though. I am trying to imagine taking good care of my 4 kids while feeling this way. Sad. Uggh. Having a diagnosis of WHY can only help, right? I really really dont want to be sick. But since the sickness has already began, its hard to feel like having the WHY will really make any difference at all! :(
Dr. Wilson ordered a slew of blood tests (24) just to rule out all of those strange anomalies. Then he said, he thinks that my pregnancies were definitely to blame for POTS and that my numbness issues now are to blame as well. Further research will be needed so that I can understand this but... for now, just knowing what to research is exciting!
Dr. Wilson really is amazing! After spending more than an hour with us he said that he truly does feel that the POTS is causing the numbness on my left side. I am excited to research that..... ?? He said a few things that are so neat that are giving me tremendous hope! He said, " I dont think you have MS, actually, I think we can rule out MS......, No, Stephanie, you do not have MS!" I needed to hear that! It brought me so much comfort!! Dr. Wilson told us that he has a patient who flys in every few months to check in with him and that she is a runner! A runner who has POTS! He said she functions for the most part with ease, and that over the course of treating her for the past couple of years that she is now up to running 5 miles a day. He said that I should probably find other things to do other than running. He said that I will probably find other things that are more enjoyable exercise wise..... (He doesn't know me well enough yet, haha) Running?! The thought has me so excited that it might be a possibility! :) Dr. Wilson said that priority number one is getting me through this pregnancy healthy, then maybe, we can worry about running, or excising in general.
He gave me some great information to move forward with. He said that he does not want me to be on any drugs. Being pregnant is hard enough on my body so adding medicines that will throw other systems and organs out of balance would be bad! He said that one of the big antidotes to POTS is salt! Yep, salt! As much as i could handle. I explained that I throw up a lot when I am pregnant so he said that a constant IV is something that we need to look into so that I can get the adequate salt intake to increase my blood pressure. The other thing he said that would help is yoga. He said yoga helps to strengthen muscles without requiring my heart to work as hard as other exercises. He said that I would need to experiment with caffeine to see if it helped or hindered me? So we have good things to move forward with!! He wants to see me in February sometime for a recheck and then again after the baby is born to get a full workup....
12-5pm For the rest of the day we just finished up the tests that the Dr.s had ordered. I had a bubble heart ultrasound, a Stress test, an ultrasound to look for blood clots in my legs and a lot of bloodwork done!
It really was a great day. It was a total blessing being there. Its a special place. People were smiling as we roamed the halls and foyers and open areas of the hospital. When we checked into our different appointments and tests, every single employee seemed happy and kind. That is so rare!! I Love the Cleveland Clinic!! As I type this I feel overwhelmed at what I have before me, a difficult pregnancy, numbness, headaches and chest pain, after the pregnancy health questions... but we are so grateful that we are getting closer to getting healthier. The gnawing sickness that I feel is depressing though. I am trying to imagine taking good care of my 4 kids while feeling this way. Sad. Uggh. Having a diagnosis of WHY can only help, right? I really really dont want to be sick. But since the sickness has already began, its hard to feel like having the WHY will really make any difference at all! :(
Friday, October 18, 2013
Wow! What a difference!
What you are about to read is a blog post I wrote the day I found out I was expecting my # 5. A blog post I wrote but did not publish because it was too ugly to admit that I felt that way! I wasn't going to publish it, but decided that its the part of the story that needed to be remembered because its where He taught me so much!!!
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November 19, 2012 4:15 pm
Its been 3 hours.
I can finally breathe, only I am betting that I just ran out of tears, the new ones being made will surely come pouring out any minute.
I took the test right after I picked up the girls from school. I was still in my workout clothes from this morning and i stunk. Mia was down for a nap and Grant was just watching a show with the girls. I was going to hop in the shower real quick. I saw the little box just sitting there and thought, "hmm, I am a week late, I love taking pregnancy tests anyway."
The second I looked at it, the line that shouldn't be there was already there!!!!
What?
Why?
How?
Odd questions for a girl who has 4 kids, I know!
Thankfully I didn't have to add "Who" to those lists of questions.....since I already had so many to answer!
What: What? No! No! No! We are done having kids!!! We were using double birth control because I am/was so freaked out about not getting pregnant! My body hasn't recovered from Mia! My body is still numb since last April...and my chest hurts and my heart races at times and I am completely wiped out and exhausted most days!! and.......... I cannot be pregnant!! I just got into the Cleveland Clinic to help me get better! Next week is my appointment! What kind of tests will they do on a pregnant lady?????? I need to get healthier, I cannot be sick, I cannot lose another year to being sick! 2009, 2011, 2012, now 2013!!!!!!! My kids cannot take care of themselves for another pregnancy! Mia!!! Mia is still just a baby! She will be two when this one is born, maybe not even!!!!
I CAN NOT DO THIS!!!
Why: Why??? Heavenly Father knows the past year I have had!!!!!!!! I cannot be sick on top of being sick! Why does He want me to have another baby? 4!!! I want to have 4!!! I am not taking good care of the 4 he has given me!! I cannot have 5! I will not live through this! My marriage will not live through another sick year!! Too much survival mode! What am I to be learning that I am not? Am I not sufficiently humbled? Am I not trying to be the best that I can be??????? Ironic that I was just talking to my sister this morning and saying: "He knows us so perfectly, He knows what we can handle even when we think we cant". Well, I suppose that is where I am now. I believe that I will not survive this..... both emotionally and physically. Numb, heart racing, exhausted, pregnant, vomiting, fainting....etc.
How: How? Heavenly Father, How!??? How do I take care of my family? How do I help all of us progress to where we are suppose to get to? How do I fortify my home, my kids, my ward.... serve at all, from my couch?????? How will I withstand the judgement? Me- with 4 kids, one on the way when I swore all over the place that I would never be pregnant again. We have lived in Richmond for 4 years...... and will have had 3 kids!!! Rabbits!!! I will be judged! We need to move, we cant fit 5 kids in this house!!! How, how will we move? We will need to do it soon, before I am dead and I can help!!!!! How do I love another one, when I dont want it??? I want to be healthy!! Its been too long!! Since before Mia, in Mexico..... I cant wait another year or more to feel well!!!???????
There they are, the tears are back. I suppose its time for me to stop writing for now.
This is what I am hoping: ............................................................
That I will look back on this post, and laugh at myself, and scoff at the little lame and selfish soul that I was. That I will have so much love and adoration for the new little life that I cant imagine life with out it?!! That I will be so filled with gratitude for a Heavenly Father who "knows me so much better than I know myself"... as the Stephanie this morning just said..... oh to be her again.....
Wow, I break so easily!
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November 19, 2012 4:15 pm
Its been 3 hours.
I can finally breathe, only I am betting that I just ran out of tears, the new ones being made will surely come pouring out any minute.
I took the test right after I picked up the girls from school. I was still in my workout clothes from this morning and i stunk. Mia was down for a nap and Grant was just watching a show with the girls. I was going to hop in the shower real quick. I saw the little box just sitting there and thought, "hmm, I am a week late, I love taking pregnancy tests anyway."
The second I looked at it, the line that shouldn't be there was already there!!!!
What?
Why?
How?
Odd questions for a girl who has 4 kids, I know!
Thankfully I didn't have to add "Who" to those lists of questions.....since I already had so many to answer!
What: What? No! No! No! We are done having kids!!! We were using double birth control because I am/was so freaked out about not getting pregnant! My body hasn't recovered from Mia! My body is still numb since last April...and my chest hurts and my heart races at times and I am completely wiped out and exhausted most days!! and.......... I cannot be pregnant!! I just got into the Cleveland Clinic to help me get better! Next week is my appointment! What kind of tests will they do on a pregnant lady?????? I need to get healthier, I cannot be sick, I cannot lose another year to being sick! 2009, 2011, 2012, now 2013!!!!!!! My kids cannot take care of themselves for another pregnancy! Mia!!! Mia is still just a baby! She will be two when this one is born, maybe not even!!!!
I CAN NOT DO THIS!!!
Why: Why??? Heavenly Father knows the past year I have had!!!!!!!! I cannot be sick on top of being sick! Why does He want me to have another baby? 4!!! I want to have 4!!! I am not taking good care of the 4 he has given me!! I cannot have 5! I will not live through this! My marriage will not live through another sick year!! Too much survival mode! What am I to be learning that I am not? Am I not sufficiently humbled? Am I not trying to be the best that I can be??????? Ironic that I was just talking to my sister this morning and saying: "He knows us so perfectly, He knows what we can handle even when we think we cant". Well, I suppose that is where I am now. I believe that I will not survive this..... both emotionally and physically. Numb, heart racing, exhausted, pregnant, vomiting, fainting....etc.
How: How? Heavenly Father, How!??? How do I take care of my family? How do I help all of us progress to where we are suppose to get to? How do I fortify my home, my kids, my ward.... serve at all, from my couch?????? How will I withstand the judgement? Me- with 4 kids, one on the way when I swore all over the place that I would never be pregnant again. We have lived in Richmond for 4 years...... and will have had 3 kids!!! Rabbits!!! I will be judged! We need to move, we cant fit 5 kids in this house!!! How, how will we move? We will need to do it soon, before I am dead and I can help!!!!! How do I love another one, when I dont want it??? I want to be healthy!! Its been too long!! Since before Mia, in Mexico..... I cant wait another year or more to feel well!!!???????
There they are, the tears are back. I suppose its time for me to stop writing for now.
This is what I am hoping: ............................................................
That I will look back on this post, and laugh at myself, and scoff at the little lame and selfish soul that I was. That I will have so much love and adoration for the new little life that I cant imagine life with out it?!! That I will be so filled with gratitude for a Heavenly Father who "knows me so much better than I know myself"... as the Stephanie this morning just said..... oh to be her again.....
Wow, I break so easily!
A return to collecting my thoughts
I have been having such a strong desire to write. I really wish I would have been writing everything down for the last year and a half. It would make it all more interesting and profound......But, I did not write it all, so I will just have to attempt to catch some of the insights I have gained from the past while living and catching the present. I thought I could just journal my thoughts in a normal handwritten journal but, I never did. For now, this truly is the best avenue for my thoughts to spill out.
So, here it goes. Attempting to journal and blog again. Hopefully I am able to learn more from my life by doing so!!
So, here it goes. Attempting to journal and blog again. Hopefully I am able to learn more from my life by doing so!!
Monday, November 26, 2012
October 22- Just Me and Bill Murray, taking it one day at a time??
You know what I have been thinking about lately......
Groundhog Day.
Not the actual date, but the movie.
Interesting, I know.
I watched the movie a year ago with Greg for the first time. I don't think I found it super inspiring at the time, maybe just funny.
Now I do though.
????? Ha Ha!
For those of you who haven't seen it, or maybe just cant see how any parallel could be taken from it, let me defend myself... :) Bill Murray's character is a man who is actually lost and doesn't even realize it. He is self centered, mean, and unlikable (well, in my opinion). That's obvious to everyone but himself. He gets an opportunity to change in the form of being forced to live the same day over and over. He spends a lot of time failing miserably and wanting to return back to the way things were, and get out of the little town. But, it is finally when he realizes that he can use this limitless day to improve that he begins to become great. He transforms into an amazing individual, and then, he is able to wake up, and move on with the rest his life, a much improved man, and not only that, he actually buys a house in the town he so desperately wanted to get out of he loves it that much!
Like the character in the movie, We wake up each day and follow much of the same patterns that we did yesterday, either because the things we did made us happy, or because we were too lazy to do something else, or because the things were habits from the days before. There are slight variations but its about the same.
It seems as though in the midst of challenges it has to be our focus to stay out of the rut that will suck us in. To not let the sadness or the monotony of life overtake us is the greatest challenge within a challenge. It is the purpose of the trial; to find the joy, to find our true selves, to find Him, in the middle of all of it and continue forward.
The hope is that little by little, we start to become great. And love the new place that we are. That we embrace the new phase, the new us. Its hard. Its harder than I thought it would be. I don't think I necessarily love this new life without running. Its just that I use to feel as though I was constantly grappling to get back to the old Steph, the one who woke up, super excited for a hard run and whatever else the day my endless energy would bring. I am slowly getting to know a new Steph though. She doesn't run as much, she does more yoga. She is more understanding, hopefully less judgmental She sews more now.... doesn't burn as many calories as running but is rewarding in its own way. Spiritually? Yes, spiritually I believe I am closer to my Savior. Which not to say that the old Steph wasn't, but there is no way she could have gotten to this depth without taking running out of the equation.
And so, I am starting to use this limitless day to try and better myself. And maybe someday, when i wake up from this "day" I will realize that I am actually right where I wanted to be, after all.
Groundhog Day.
Not the actual date, but the movie.
Interesting, I know.
I watched the movie a year ago with Greg for the first time. I don't think I found it super inspiring at the time, maybe just funny.
Now I do though.
????? Ha Ha!
For those of you who haven't seen it, or maybe just cant see how any parallel could be taken from it, let me defend myself... :) Bill Murray's character is a man who is actually lost and doesn't even realize it. He is self centered, mean, and unlikable (well, in my opinion). That's obvious to everyone but himself. He gets an opportunity to change in the form of being forced to live the same day over and over. He spends a lot of time failing miserably and wanting to return back to the way things were, and get out of the little town. But, it is finally when he realizes that he can use this limitless day to improve that he begins to become great. He transforms into an amazing individual, and then, he is able to wake up, and move on with the rest his life, a much improved man, and not only that, he actually buys a house in the town he so desperately wanted to get out of he loves it that much!
Like the character in the movie, We wake up each day and follow much of the same patterns that we did yesterday, either because the things we did made us happy, or because we were too lazy to do something else, or because the things were habits from the days before. There are slight variations but its about the same.
It seems as though in the midst of challenges it has to be our focus to stay out of the rut that will suck us in. To not let the sadness or the monotony of life overtake us is the greatest challenge within a challenge. It is the purpose of the trial; to find the joy, to find our true selves, to find Him, in the middle of all of it and continue forward.
The hope is that little by little, we start to become great. And love the new place that we are. That we embrace the new phase, the new us. Its hard. Its harder than I thought it would be. I don't think I necessarily love this new life without running. Its just that I use to feel as though I was constantly grappling to get back to the old Steph, the one who woke up, super excited for a hard run and whatever else the day my endless energy would bring. I am slowly getting to know a new Steph though. She doesn't run as much, she does more yoga. She is more understanding, hopefully less judgmental She sews more now.... doesn't burn as many calories as running but is rewarding in its own way. Spiritually? Yes, spiritually I believe I am closer to my Savior. Which not to say that the old Steph wasn't, but there is no way she could have gotten to this depth without taking running out of the equation.
And so, I am starting to use this limitless day to try and better myself. And maybe someday, when i wake up from this "day" I will realize that I am actually right where I wanted to be, after all.
Sunday, July 1, 2012
Surviving it
OK, here is what I DONT have.
MS
brain tumor
bleeding on the brain
Lyme disease
Lupus
ovarian cancer
thyroid disease
heart arrhythmia
diabetes
seizures
oh, and I am not pregnant! haha
We are slowly but surely ruling things out. Which is comforting to have the above things scratched off the list!
I met with my family Dr. he said that he does not know what could cause these symptoms. I walked out of his Dr. office very discouraged. He also called some friends of his who are neurologist and he got me an appointment with one of them....... In September! Um thanks.
Yikes, we will be trying other things before then!
I have been trying to move on-ish. When I start to get a little depressed at the current situation I have to remember that this wont last forever. And for Heaven's sake Stephanie! There are worse things!!!!!!!
I can't quite get on with it though.... Maybe I am not suppose to get comfortable with these symptoms as the new me, maybe I am suppose to get angry to help fuel me forward to search for answers....
You know when you have the stomach flu, and you feel awful, and you say,"Yuck, I am just going to take it easy today, tomorrow, when I feel better, I will run those errands, clean my house, take my kids to the park, etc.....
I cant do that!
I have a tendency to do that with this.... ailment?
It didn't dawn on me that I had been doing this to some degree until Grant's birthday, June 4th. I was driving to my pelvic CT scan bawling because it was my little guys birthday and because I had been "sick" I had not planned a lot or run the errands for presents and stuff. It hit me hard that I did not want to let that day pass me by with just a sort of "celebration" of him. I am passionate about not missing them, while they are right here with me. And I had been missing them. By putting off things that I would normally do with them I will miss these moments. Which is worse than any sickness or disability that could come.
I feel a little stuck.
I am struggling with the balance of trying to fiercely find out what is going on here.... and also trying to move forward with and for my family and maintaining a happy environment. They feel like opposites. I cannot do both at once for some reason. Either I am researching and calling doctors and moving forward somehow to get healthier. Or I am maintaining the household stuff, playing with the kids and just trying to be grateful and happy for where I am now and accepting the new normal. One feels like it requires survival mode, the other tries to repair. We cannot function in survival mode for too long. I think that is where I have been. And it was ok for a while. But it is not anymore.
When you are surviving, there isn't room in your body/spirit for planning for tomorrow, or preparing emotionally/physically/spiritually for what is to come. Not to mention making sure that the wonderful people in your life are cared for not just for today, but for tomorrow too. That their buckets have been filled today, and that there is lots more for tomorrow......
There is just today. And making it through the day is all that matters. Old goals go out the window. Because, after all, if you make it into your bed at night, that is all that survival has asked of you.
I want to thrive again.
MS
brain tumor
bleeding on the brain
Lyme disease
Lupus
ovarian cancer
thyroid disease
heart arrhythmia
diabetes
seizures
oh, and I am not pregnant! haha
We are slowly but surely ruling things out. Which is comforting to have the above things scratched off the list!
I met with my family Dr. he said that he does not know what could cause these symptoms. I walked out of his Dr. office very discouraged. He also called some friends of his who are neurologist and he got me an appointment with one of them....... In September! Um thanks.
Yikes, we will be trying other things before then!
I have been trying to move on-ish. When I start to get a little depressed at the current situation I have to remember that this wont last forever. And for Heaven's sake Stephanie! There are worse things!!!!!!!
I can't quite get on with it though.... Maybe I am not suppose to get comfortable with these symptoms as the new me, maybe I am suppose to get angry to help fuel me forward to search for answers....
You know when you have the stomach flu, and you feel awful, and you say,"Yuck, I am just going to take it easy today, tomorrow, when I feel better, I will run those errands, clean my house, take my kids to the park, etc.....
I cant do that!
I have a tendency to do that with this.... ailment?
It didn't dawn on me that I had been doing this to some degree until Grant's birthday, June 4th. I was driving to my pelvic CT scan bawling because it was my little guys birthday and because I had been "sick" I had not planned a lot or run the errands for presents and stuff. It hit me hard that I did not want to let that day pass me by with just a sort of "celebration" of him. I am passionate about not missing them, while they are right here with me. And I had been missing them. By putting off things that I would normally do with them I will miss these moments. Which is worse than any sickness or disability that could come.
I feel a little stuck.
I am struggling with the balance of trying to fiercely find out what is going on here.... and also trying to move forward with and for my family and maintaining a happy environment. They feel like opposites. I cannot do both at once for some reason. Either I am researching and calling doctors and moving forward somehow to get healthier. Or I am maintaining the household stuff, playing with the kids and just trying to be grateful and happy for where I am now and accepting the new normal. One feels like it requires survival mode, the other tries to repair. We cannot function in survival mode for too long. I think that is where I have been. And it was ok for a while. But it is not anymore.
When you are surviving, there isn't room in your body/spirit for planning for tomorrow, or preparing emotionally/physically/spiritually for what is to come. Not to mention making sure that the wonderful people in your life are cared for not just for today, but for tomorrow too. That their buckets have been filled today, and that there is lots more for tomorrow......
There is just today. And making it through the day is all that matters. Old goals go out the window. Because, after all, if you make it into your bed at night, that is all that survival has asked of you.
I want to thrive again.
Friday, June 1, 2012
I scared off my Nuerologist
I thought I would make a fun list of symptoms since I get asked about them and then this way, I also have a list so that when they go away I can just check them off..... :) Please be aware that I am not trying to whine...
numbness on my left side (not new, but I am excited to check this one off)
pressure in the left side of my neck
headache and pressure on the back of my head (left side of course)
pressure in my torso, pelvis area
bloated feeling
no appetite, I even try to eat but I am immediately full, and nauseas when I do.
lower back pain
fatigued
constipation
breathing feels "tight"
occasional slurred speech
night sweats
pain, pressure in my armpits
I have lost 8 lbs in the last month, 5 in the last 2 weeks.
Yay, I am so glad that I blogged about all of those details.
I went to the ER on Monday because with all of these symptoms and throwing up and slurring, I was sent over the edge.... Greg and the kids were at the lake so I had a perfect opportunity to go, I wouldn't inconvenience anyone. Haha.
They did a CAT scan of my brain, to make sure there was no bleeding, an EKG, blood work, and I peed in a cup.
All of these came back..... normal.... of course. Haha.
Because of my trip to the ER i got into my nuerologist sooner though! I was able to get in this past Wednesday. It did not go the way I thought it might.....
After I had gone through just a few of my symptoms (he was the one I really wanted to complain to) he stopped me and said that he felt like he had ran the tests that he needed to and those were all normal and so I was now out of his specialty and that I would now need to report back to my family doctor. He said I did not have MS or brain tumors and so that was all he could do. He then said that to him, it sounded like I could have Ovarian Cancer. With these symptoms all together and the fact that my Grandma had it, he ordered a CT scan with and without contrast.
Interesting. I don't fit the risk factors (other than family history) so its highly unlikely. Some of my symptoms do line up but they are all so non descript. So we have another test, its scheduled for Monday morning.
I am excited for these test results to come back normal, and then after that.... I think I will move on to see if I have a weird allergy or something. :)
I really, really need to put cute pics of my kids on this blog. That is what blogs are for, isn't it?
numbness on my left side (not new, but I am excited to check this one off)
pressure in the left side of my neck
headache and pressure on the back of my head (left side of course)
pressure in my torso, pelvis area
bloated feeling
no appetite, I even try to eat but I am immediately full, and nauseas when I do.
lower back pain
fatigued
constipation
breathing feels "tight"
occasional slurred speech
night sweats
pain, pressure in my armpits
I have lost 8 lbs in the last month, 5 in the last 2 weeks.
Yay, I am so glad that I blogged about all of those details.
I went to the ER on Monday because with all of these symptoms and throwing up and slurring, I was sent over the edge.... Greg and the kids were at the lake so I had a perfect opportunity to go, I wouldn't inconvenience anyone. Haha.
They did a CAT scan of my brain, to make sure there was no bleeding, an EKG, blood work, and I peed in a cup.
All of these came back..... normal.... of course. Haha.
Because of my trip to the ER i got into my nuerologist sooner though! I was able to get in this past Wednesday. It did not go the way I thought it might.....
After I had gone through just a few of my symptoms (he was the one I really wanted to complain to) he stopped me and said that he felt like he had ran the tests that he needed to and those were all normal and so I was now out of his specialty and that I would now need to report back to my family doctor. He said I did not have MS or brain tumors and so that was all he could do. He then said that to him, it sounded like I could have Ovarian Cancer. With these symptoms all together and the fact that my Grandma had it, he ordered a CT scan with and without contrast.
Interesting. I don't fit the risk factors (other than family history) so its highly unlikely. Some of my symptoms do line up but they are all so non descript. So we have another test, its scheduled for Monday morning.
I am excited for these test results to come back normal, and then after that.... I think I will move on to see if I have a weird allergy or something. :)
I really, really need to put cute pics of my kids on this blog. That is what blogs are for, isn't it?
Thursday, May 31, 2012
My Happy Ending
Greg and I have been talking a lot this past month about Admiral James Stockdale. He was the highest ranking Navy POW in Vietnam. He was a POW for 7 years and his attitude had everything to do with why he survived. Look him up, his story is super inspiring. James Collins wrote a book called Good to Great (which is how we learned about him) and he interviewed Admiral Stockdale. When asked how he was able to cope he said,"I never lost faith in the end of the story, I never doubted not only that I would get out, but also that I would prevail in the end and turn the experience into the defining event of my life, which, in retrospect, I would not trade."[11]When Collins asked who didn't make it out of Vietnam, Stockdale replied:"Oh, that's easy, the optimists. Oh, they were the ones who said, 'We're going to be out by Christmas.' And Christmas would come, and Christmas would go. Then they'd say, 'We're going to be out by Easter.' And Easter would come, and Easter would go. And then Thanksgiving, and then it would be Christmas again. And they died of a broken heart."[11]Stockdale then added:"This is a very important lesson. You must never confuse faith that you will prevail in the end—which you can never afford to lose—with the discipline to confront the most brutal facts of your current reality, whatever they might be."[11]Collins went on to describe this as the Stockdale Paradox.Yes, we MUST have faith that we will prevail in the end.And, we MUST confront the brutal facts of where we are at this very minute.At times, it seems that they are opposites!The end of my story says that I will be healed, in my blessing it said that it will be imperative to remember those words. At first I thought, "How could I ever forget? "What is this thing that is wrong with my body that would require such faith, and such a blessing?"Now I am thinking, "Oh, I will need to 'remember' because it might take a while or maybe even a long time to be healed. Even now.... even though it has been a little over a month, in the grand scheme of things, that really isn't a long time. But I have to keep reminding myself that I have received a promise. A beautiful blessing that I will be healed. A Happy ending..... but the facts that I am confronting now need to be addressed and helped and if possible.....treated.
Friday, May 25, 2012
What exactly do you mean....... normal?
Normal?
As in, I am really tired all the time.
Normal?
As in, I feel a lot of pressure in my torso area.
Normal?
As in, I cant feel the left side of my body!!
So with all of these tests that we have been having, 2 MRIs, 3 different sets of bloodwork, a fun spinal tap, etc... everything is coming back... normal. But my symptoms are not normal. So what is a girl to do? I talked to the assistant for the nuerologist (for the 3rd time) and she, somewhat begrudgingly, told me that all of the test results were normal. I asked her what tests were next and what the new plan was and she said there were no more tests..... that I just need to wait for my next appointment (June 28th) and then maybe he can prescribe me something for my symptoms.
Um, No.
I do not wait. I will not wait for another month to find out why my body is reacting the way it is. Something must be the cause. Another month without running or really feeling like myself? No.
I am trying to remind myself that normal, is good!! Bad news would be terrifying. Not knowing the real reason why, just might make me go crazy.
As in, I am really tired all the time.
Normal?
As in, I feel a lot of pressure in my torso area.
Normal?
As in, I cant feel the left side of my body!!
So with all of these tests that we have been having, 2 MRIs, 3 different sets of bloodwork, a fun spinal tap, etc... everything is coming back... normal. But my symptoms are not normal. So what is a girl to do? I talked to the assistant for the nuerologist (for the 3rd time) and she, somewhat begrudgingly, told me that all of the test results were normal. I asked her what tests were next and what the new plan was and she said there were no more tests..... that I just need to wait for my next appointment (June 28th) and then maybe he can prescribe me something for my symptoms.
Um, No.
I do not wait. I will not wait for another month to find out why my body is reacting the way it is. Something must be the cause. Another month without running or really feeling like myself? No.
I am trying to remind myself that normal, is good!! Bad news would be terrifying. Not knowing the real reason why, just might make me go crazy.
......Blood patch...... fun?
I called the radiology department at St. Francis on Monday morning. I figured that if my headache and backache were still this bad that they would probably like to know. Right? I thought that they probably got these kind of phone calls all the time though... whiny patients saying they just had a lumbar puncture and wanted relief?
As soon as I said what my issue was, the receptionist said, "uh oh, not good, I will page the radiologist and we will call you right back. Within 5 minutes he called back and walked me through where my pain was. He said that he would check back in with me throughout the day. And boy did he! He called me 5 more times that day to check in and then at 4:00 he ordered a "blood patch" for Tuesday at 1:30 with the Intervention Radiologist.
A blood patch is where they run an iv in your arm and then they insert another needle into your spine and then draw the blood and insert it directly into your spine so that your own blood will clot, and close the hole in your spine that should have healed on its own. The severe headache is from the inbalance of not having enough fluid because it is leaking... to cushion your brain.... ouch. I didn't care what they had to do, I was just so happy that they knew how to fix how I felt. It got a little tricky because when I was laying there he said that I was going to feel pressure from the blood going into my body, and that i needed to tell him when it felt like there was too much pressure and then he would need to stop. With the left side of my body being as numb as it has been since the spinal tap (an 8/9 out of 10), I had a hard time figuring that out but he was able to put in 8cc of blood. They said that i should find relief within a few hours. I was so excited for that!
They were right, by the time I went to bed on Tuesday night I was feeling a little better and by This morning (Wednesday) the headache was gone! I was still nauseas and everything below my head felt like it had been hit by a truck but hey, I'll take it!! haha!!
As soon as I said what my issue was, the receptionist said, "uh oh, not good, I will page the radiologist and we will call you right back. Within 5 minutes he called back and walked me through where my pain was. He said that he would check back in with me throughout the day. And boy did he! He called me 5 more times that day to check in and then at 4:00 he ordered a "blood patch" for Tuesday at 1:30 with the Intervention Radiologist.
A blood patch is where they run an iv in your arm and then they insert another needle into your spine and then draw the blood and insert it directly into your spine so that your own blood will clot, and close the hole in your spine that should have healed on its own. The severe headache is from the inbalance of not having enough fluid because it is leaking... to cushion your brain.... ouch. I didn't care what they had to do, I was just so happy that they knew how to fix how I felt. It got a little tricky because when I was laying there he said that I was going to feel pressure from the blood going into my body, and that i needed to tell him when it felt like there was too much pressure and then he would need to stop. With the left side of my body being as numb as it has been since the spinal tap (an 8/9 out of 10), I had a hard time figuring that out but he was able to put in 8cc of blood. They said that i should find relief within a few hours. I was so excited for that!
They were right, by the time I went to bed on Tuesday night I was feeling a little better and by This morning (Wednesday) the headache was gone! I was still nauseas and everything below my head felt like it had been hit by a truck but hey, I'll take it!! haha!!
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