Today was very exhausting. I had my follow up with my neurologist, Dr. Blum and it wiped me out emotionally. The anticipation of talking to him caused me a TON stress.... My little blue MS notebook that I carry with me was filled with questions and new symptoms I'm experiencing. Questions about the disease itself. Questions about the medications. Questions about complimentary and alternative medicine. Oh where to start and what to say!! My feeble mind had been on over-drive and it is tiring!!
From the very beginning Dr. Blum has been amazing and today was no different. This wonderful medical doctor spent a 45 min talking to me about my disease. Yes, I ACTUALLY timed it. He discussed my disease progress in depth and detail, as one health care professional to another, and really put my mind at ease. Thank you Brian and Mary Orsak for the phenomenal referral. I am confident that together, Dr Blum and I have laid out a treatment plan that will help keep me in remission and out of relapse for a long, long time.
So what exactly is the next step? Ryan and I put a lot of thought and debate into our final decision. It was not one we have taken lightly. This is MY LIFE. I am only 33 years YOUNG. Multiple Sclerosis has turned my whole world upside down and that, my friends, seriously pisses me off. I want to fight this disease process as aggressively and as thoroughly as possible. I CANNOT and WILL NOT allow this to rule my life anymore.
So, this is ultimately what it has come down to:
- I WILL (first and foremost) have a positive mental attitude. Dr. Blum and I discussed the power of the mind and how staying positive improves over-all health in general so, in my case it is even more essential. Those of you that know me, know that generally I am a very happy person and annoyingly positive and optimistic. This hasn't been the case the last few weeks, and I really need to work on that.
- I WILL start on the drug Copaxone. It is a once daily injectable into the fatty layer just under the skin. It is a drug that stimulates myelin (the coating around the nerves) to be made and also blocks my immune system from destroying it.
- I WILL change my diet, cutting out inflammatory foods, most processed foods, and sugar. Though there are no studies that suggest diet itself helps the course of MS, again, this is an over-all life style change and it surely isn't going to hurt me.
- I WILL exercise 3-4 times a week for at least 30 minutes. This will consist of things such as jogging, yoga, or light weight training. Dr Blum says this is probably one of the most important things to do because staying strong physically and limber will help combat any relapses.
- I WILL cut back my stress from work. Anyone who knows me, knows I am a work horse. I am balls balls to the wall, full throttle 100%. I will ALWAYS give my patients 100% of me, that is not the issue. but, it doesn't mean I have to allow myself to be over-worked. I HAVE to find a balance.
Essentially, I WILL take care of ME because I can't (as a mom, as a wife, as a doctor) take care of anyone else if I am not well. I am too young. I have to be able to see my children grow up and have children while maintaining a good quality of life.
I will learn DEAL with my disease, not DIE from or become DISABLED by it. There is NO alternative. period.
I AM a Warrior.
--Warrior
Wednesday, October 24, 2012
Tuesday, October 23, 2012
Back to Work :D
So, I finally went back to work for a full day since my IV infusion therapy. I was a ball full of emotion!! I was unsure how my body would hold up, scared I wouldn't be able to preform my job duties correctly, and nervous that my 'brain fog' would set in and it would leave me bumbling like an idiot.
I won't lie, the day was hard but I did so much better then I thought!! Being with my patients again was AMAZING. I missed them all so much and the crazy thing is, THEY missed me as well! I got so many "I'm so glad you're back Dr. Wilson!" And "No one takes care of me quite like you do!" I even got a "You know, you're the only one I really trust with neck." It made my heart happy to know that all the time I've spent caring for my patients has truly paid off. I'm irreplaceable *evil laugh inserted here* But really, it feels good to be needed and to know that my patients trust me enough to heal them.
I'm not back to full time yet, but it is my goal to be back in full swing with two more weeks. I have a few more things to sort through and a bit more rest to catch up on!
OH YEAH!! I forgot!! I got the results from the MRI of my neck back!! My spine is perfect!!! The only MS lesions I have are in the brain! YAY!! Thank you Lord. Now could please fully restore my vision and take away the last bit of fatigue? I know my mother-in-law is tired of Driving Mrs. Daisy and would love to go home to her puppies and party barge! Thank you, amen.
Well, it's time to start my day. My fattie is making raspberries at me from his crib and I'm pretty sure he's already dreaming of pancakes and banana!
I am making strides.... One day at a time.
---Warrior
I won't lie, the day was hard but I did so much better then I thought!! Being with my patients again was AMAZING. I missed them all so much and the crazy thing is, THEY missed me as well! I got so many "I'm so glad you're back Dr. Wilson!" And "No one takes care of me quite like you do!" I even got a "You know, you're the only one I really trust with neck." It made my heart happy to know that all the time I've spent caring for my patients has truly paid off. I'm irreplaceable *evil laugh inserted here* But really, it feels good to be needed and to know that my patients trust me enough to heal them.
I'm not back to full time yet, but it is my goal to be back in full swing with two more weeks. I have a few more things to sort through and a bit more rest to catch up on!
OH YEAH!! I forgot!! I got the results from the MRI of my neck back!! My spine is perfect!!! The only MS lesions I have are in the brain! YAY!! Thank you Lord. Now could please fully restore my vision and take away the last bit of fatigue? I know my mother-in-law is tired of Driving Mrs. Daisy and would love to go home to her puppies and party barge! Thank you, amen.
Well, it's time to start my day. My fattie is making raspberries at me from his crib and I'm pretty sure he's already dreaming of pancakes and banana!
I am making strides.... One day at a time.
---Warrior
Saturday, October 20, 2012
New MRI tradition? HELP!!
Who's the patient here?? hmmmm....
So, yesterday I had my second MRI. This time I headed to Memorial Herman Imagining Center in Pasadena with my mother-in-law in tow.... little did she know what she was in for, haha! I asked the facility to let her come in the testing area with me because as most of you now know, I am horribly claustrophobic. Mrs. Mary was such a trooper, let me tell you. When they told us we had to "gown" up, I thought for sure she was going to tell me "FORGET IT BLONDIE!" Much to my relief, she simply shrugged and began to make jokes about walking around the facility with her gown open and flapping. I began to relax some, took my valium and began to change.
As I struggled to get my clothing off in the small dressing room, I caught a glimpse of myself in the mirror. THIS is what my life has become: a series of doctors appointments and MRI's? "WHY AM I BEING SUCH A WIMP? I seriously need to get over it." I will be doing this a lot over the course of my life. "Im a grown ass woman. I should be able to do this alone, right?" Then it hit me! Maybe I should try to make this fun somehow! How can I turn this anxiety ridden situation into something that doesn't make me want to curl up in a ball and cry? By this point my head is starting to feel fuzzy so I make a mental note to start a tradition of some kind and wondered over to Mrs. Mary's side. I decided her shoulder looked really comfortable so we smiled for the blog and talked crap about the election as I half snoozed.
The MRI of my neck went smoothly with Mrs. Mary right by my side holding my hand. She reminded me to breath a lot but overall I think my anxiety wasn't as bad this time around.
Now that I am back to reality the question of How do I make this fun? is still floating around in my head... Most of you know that I am silly and crazy and usually LOVE life! I laugh like a hyena and used to do it often. I really need to find that part of me again.
I talked to my good friend, Aimee, about this yesterday and she suggested drawing on a different mustache each time I get an MRI! I love this idea because it won't interfere with the MRI itself and I can change it up each time! I could definitely have a lot of fun with that! Imagine what those nurses would think if I came walking in with a little hitler 'stache? classic! Mrs. Mary also bought the kids Madagascar 3 yesterday and it came with a crazy afro wig! Aimee suggested the wig and a clown nose! I thought that was pretty clever too! (yes, I photoshopped a mustache on my picture... lol)
So, here is my proposal to all of you who are following my blog: What should I do to make this easier for me and a lot more fun? It needs to be something fairly simple that I can do each time and will not interfere with the MRI (so no metal of any kind). Leave me a comment and let me know!! Help me kick some MS ASS!1
finding my inner silliness
---Warrior
So, yesterday I had my second MRI. This time I headed to Memorial Herman Imagining Center in Pasadena with my mother-in-law in tow.... little did she know what she was in for, haha! I asked the facility to let her come in the testing area with me because as most of you now know, I am horribly claustrophobic. Mrs. Mary was such a trooper, let me tell you. When they told us we had to "gown" up, I thought for sure she was going to tell me "FORGET IT BLONDIE!" Much to my relief, she simply shrugged and began to make jokes about walking around the facility with her gown open and flapping. I began to relax some, took my valium and began to change.
As I struggled to get my clothing off in the small dressing room, I caught a glimpse of myself in the mirror. THIS is what my life has become: a series of doctors appointments and MRI's? "WHY AM I BEING SUCH A WIMP? I seriously need to get over it." I will be doing this a lot over the course of my life. "Im a grown ass woman. I should be able to do this alone, right?" Then it hit me! Maybe I should try to make this fun somehow! How can I turn this anxiety ridden situation into something that doesn't make me want to curl up in a ball and cry? By this point my head is starting to feel fuzzy so I make a mental note to start a tradition of some kind and wondered over to Mrs. Mary's side. I decided her shoulder looked really comfortable so we smiled for the blog and talked crap about the election as I half snoozed.
The MRI of my neck went smoothly with Mrs. Mary right by my side holding my hand. She reminded me to breath a lot but overall I think my anxiety wasn't as bad this time around.
Now that I am back to reality the question of How do I make this fun? is still floating around in my head... Most of you know that I am silly and crazy and usually LOVE life! I laugh like a hyena and used to do it often. I really need to find that part of me again.
I talked to my good friend, Aimee, about this yesterday and she suggested drawing on a different mustache each time I get an MRI! I love this idea because it won't interfere with the MRI itself and I can change it up each time! I could definitely have a lot of fun with that! Imagine what those nurses would think if I came walking in with a little hitler 'stache? classic! Mrs. Mary also bought the kids Madagascar 3 yesterday and it came with a crazy afro wig! Aimee suggested the wig and a clown nose! I thought that was pretty clever too! (yes, I photoshopped a mustache on my picture... lol)
So, here is my proposal to all of you who are following my blog: What should I do to make this easier for me and a lot more fun? It needs to be something fairly simple that I can do each time and will not interfere with the MRI (so no metal of any kind). Leave me a comment and let me know!! Help me kick some MS ASS!1
finding my inner silliness
---Warrior
Thursday, October 18, 2012
Finally done with the IV infusions..... HOORAY
Holy shit, I look like a human pin cushion.... I have so many pin sticks.... after three days of IV steroid therapy and multiple blood draws, I am so glad to say that I am on to my oral dose of my wonder drug. So many thanks go out to Sweet Shaky Susan. She was so wonderful to me. I could not have asked for a better nurse.
My vision has NOT returned to normal but it IS getting better. My colors are becoming more vibrant but things are still blurry. I wane back and forth between feeling almost human again and being truly exhausted. I wish my body would just make up its mind. I am clumsy and I swear I might be losing my marbles. *sigh* MS is such a stupid disease. I can honestly say though, I will take the awkwardness and tiredness over the horrific pain and blindness that plagued my body for three weeks straight. I never EVER thought I would say this but, I honestly can't wait to drive again. It is so weird but losing that part of your independence. Having to be chauffeured around like a diva.... what a crock.
And then there is this issues of the MRI's...... The first MRI I had was of my brain and my eyes. I was a nervous wreck and had to be sedated. I am horribly claustrophobic and the thought of being in that machine with all its noises and tight space makes my heart beat fast just thinking about it. I don't remember a lot about it all except being in so much pain and ridden with more anxiety then I've had in a long time. Ryan was allowed to come into the testing room with me and stood at the foot of the table touching my legs and feet the entire time. Although I was comforted by his presence, the enclosed space nearly sent me over the edge. I can't say how I made it through that experience. I cried a lot and prayed to God to give me the strength to endure.
When looking at an MRI of the brain with MS you will see multiple white spots where the brain should look gray. I had 19 lesions. yikes. They also looked at my eyes to see if there was any damage to my optic nerve itself due to my vision loss. They saw minimal inflammation which was a good thing.
I am scheduled for another MRI of my cervical spine tomorrow. The cervical spine is essentially the neck to just past the shoulders. The doctors will be looking for syringomyelia and/or transverse myelitis. These are two common spinal disorders that can be found with people who have MS. It can determine my course of treatment and my life style so it is important that they check to be sure my spine is healthy and no lesions are seen.
Thankfully, I will have my mother-in-law by my side tomorrow. I wish my mommy could be here but unfortunately time and circumstance do not allow. I couldn't make it through these weeks without Mrs. Mary though. She has dropped her whole life to come to Texas to take care of me. I know she will hold my hand and help get through this this season of my life. I truly am blessed.
Unfortunately, I will have to have many more MRI's now that I have this ugly disease so, I guess I will have to learn how to deal with this...... I HATE THIS DAMN DISEASE.
I just want my life back.... I'm working on it.
--Warrior
My vision has NOT returned to normal but it IS getting better. My colors are becoming more vibrant but things are still blurry. I wane back and forth between feeling almost human again and being truly exhausted. I wish my body would just make up its mind. I am clumsy and I swear I might be losing my marbles. *sigh* MS is such a stupid disease. I can honestly say though, I will take the awkwardness and tiredness over the horrific pain and blindness that plagued my body for three weeks straight. I never EVER thought I would say this but, I honestly can't wait to drive again. It is so weird but losing that part of your independence. Having to be chauffeured around like a diva.... what a crock.
And then there is this issues of the MRI's...... The first MRI I had was of my brain and my eyes. I was a nervous wreck and had to be sedated. I am horribly claustrophobic and the thought of being in that machine with all its noises and tight space makes my heart beat fast just thinking about it. I don't remember a lot about it all except being in so much pain and ridden with more anxiety then I've had in a long time. Ryan was allowed to come into the testing room with me and stood at the foot of the table touching my legs and feet the entire time. Although I was comforted by his presence, the enclosed space nearly sent me over the edge. I can't say how I made it through that experience. I cried a lot and prayed to God to give me the strength to endure.
When looking at an MRI of the brain with MS you will see multiple white spots where the brain should look gray. I had 19 lesions. yikes. They also looked at my eyes to see if there was any damage to my optic nerve itself due to my vision loss. They saw minimal inflammation which was a good thing.
I am scheduled for another MRI of my cervical spine tomorrow. The cervical spine is essentially the neck to just past the shoulders. The doctors will be looking for syringomyelia and/or transverse myelitis. These are two common spinal disorders that can be found with people who have MS. It can determine my course of treatment and my life style so it is important that they check to be sure my spine is healthy and no lesions are seen.
Thankfully, I will have my mother-in-law by my side tomorrow. I wish my mommy could be here but unfortunately time and circumstance do not allow. I couldn't make it through these weeks without Mrs. Mary though. She has dropped her whole life to come to Texas to take care of me. I know she will hold my hand and help get through this this season of my life. I truly am blessed.
Unfortunately, I will have to have many more MRI's now that I have this ugly disease so, I guess I will have to learn how to deal with this...... I HATE THIS DAMN DISEASE.
I just want my life back.... I'm working on it.
--Warrior
Wednesday, October 17, 2012
The Breakdown of a Wife....
As I listen to rain fall outside my bed room more tears slowly fall down my face. It's 4:45 AM and I haven't slept a wink. For the first time since my diagnosis I have allowed myself to truly feel the emotions bubbling inside me. The ones that have been just beneath the surface waiting for me to release them. The tears fall now like a slow leak from a faucet that needs to be tightened. I'm thankful that they aren't the sobs that racked my body only a few hours before so I let them wet my pillow and reach for Ryan's hand. My rock. I never could have made it through these last three weeks without his stead fast love and constant support. How can I even begin to thank this beautiful man who softly snores beside me.... I don't think I will ever be able to. I need him like I need air and I can't imagine my life without him.
The tears come faster and harder now and become too much for me to take. I decide to get up and follow the sunlight as it rises in the sky. I think back to how the night progressed and I am thankful I have finally allowed myself to experience the roller coaster in a more healing sort of way. It started when Ryan and I laid down for the evening. As he gently rubbed my aching hips and back he said to me, "You know when I get my St. Michael's back piece, how I told you I want to put some kind of banner in his shield? Well, I decided I want to put an orange ribbon there instead.... for you. You've been so strong, and I am so proud of you. I love you so much." My heart dropped in my chest and in the dark my mouth hung agape. I quietly replied, "I've been thinking about getting an orange ribbon too..." He gently stroked my arm and mentioned maybe getting one somewhere else as well,
I don't really remember what exactly he said at that point because my emotions just took over. At some point we had rolled face to face and I said to him, "You know, this is the first time you've really even said much to me about all this since I was diagnosed. Will you talk to me? Even if we never talk about it again. Will you just tell me how you feel? Please. I need to know." He remarked simply and sadly, "I'm scared as hell because I can't fix this and I can't bare to see you in pain. I don't want anything to happen to you." As I begin to cry he scoops me in his arms and the sobs I had been holding at bay unleash. He strokes my hair and back and in shallow whispers I begin to let all my fears out and my heart breaks into a thousand pieces.
This is so unfair. To my children, to my husband, to my patients. I am angry now. What if I can't control this the way I want to. The way I need too. I want to live and full and happy and healthy life and be able to see my children grow up. I want our lives to focus around THEM not this stupid disease. I don't want Ryan to spend his years taking care of me ultimately pushing me around in a wheel chair because I've become disabled.
Disabled. Holy shit. He didn't sign up for this. This is NOT how this was suppose to happen. I am in complete anguish at this point. We were supposed to get old and do old crotchety things together like traveling in an RV and bird watch and walk hand in hand down at the lake. This was NOT part of the deal.
Why is this happening to me? Im angry again. My life has been quite an adventure to say the least. I'm honestly ready to just be boring. I don't want anymore. I've had enough. Can't I catch a damn break? I'm not mad at God per se.... but each time I pray, I don't even know what to say. My prayers end up some sort of version of this...
Dear Heavenly Father, Thank you for this beautiful day and all the amazing people you have put in my life. Thank you for blessing me beyond measure in so many ways. Can you please take away this pain? Can you please take away my disease? Can you please give me back my old normal? I'm not sure I know how to handle this...... please. Amen.
All the things that have been taught to me through my christian life flow through my head (God doesn't give you more then you can handle. Lean on him for he will be your strength. blah blah blah) None of them provide comfort or healing for my aching heart or over active brain. I am consumed with pain and fatigue and pure confusion. Please God help me. But I can't stop long enough to listen.
As the tears finally subside, Ryan begins to reassure me that he will gladly push my wheel chair if it ever comes to that and we can bird watch on the deck of the lake together hand in hand. He kisses my forehead sweetly and says he will do whatever it takes to make sure I am happy and he will never leave my side. He doesn't have an answer to the why, but holds me close and says to stay strong in Lord and keep praying. He says we will get through this together. As a family. More tears come, quietly now, and we lay together in the dark reveling in the moment that has finally come to pass.
This sweet, tired man has confided in me and comforted me beyond belief. As he drifts off to sleep I lay staring at his figure in the dark. I can't help but lay my hand on his chest and listen to him breath. I'm scared to death of Thursday coming. Thursday is the day he goes back to work. It will take him away from me for two weeks. I am so thankful he has been by my side for the hardest weeks of my life to date and relieved his mother is coming to stay with me while he is gone. I think in my mind, "Maybe he will rest, not having to take care of me," but I know in my heart it's a lie. He will worry and count the days until he comes home, just like I will. God, thank you so much for giving me this wonderful man.
As the birds chirp and 6AM rolls around, I know its time to start my day. I am thankful for the tears that have come this night and into the early morning. My heavy heart needed the release. My sweet fat pumpkin, Ryker, begins to stir in his room and it's my que to finish up my thoughts and put my worried mind to rest.
I love you Ryan Wilson. Thank you for being my rock. I know I will over come this and together we will be ok. A new ok. It will never be the same ok as it was before, but somehow, someway, we will find new path.
--Warrior
The tears come faster and harder now and become too much for me to take. I decide to get up and follow the sunlight as it rises in the sky. I think back to how the night progressed and I am thankful I have finally allowed myself to experience the roller coaster in a more healing sort of way. It started when Ryan and I laid down for the evening. As he gently rubbed my aching hips and back he said to me, "You know when I get my St. Michael's back piece, how I told you I want to put some kind of banner in his shield? Well, I decided I want to put an orange ribbon there instead.... for you. You've been so strong, and I am so proud of you. I love you so much." My heart dropped in my chest and in the dark my mouth hung agape. I quietly replied, "I've been thinking about getting an orange ribbon too..." He gently stroked my arm and mentioned maybe getting one somewhere else as well,
I don't really remember what exactly he said at that point because my emotions just took over. At some point we had rolled face to face and I said to him, "You know, this is the first time you've really even said much to me about all this since I was diagnosed. Will you talk to me? Even if we never talk about it again. Will you just tell me how you feel? Please. I need to know." He remarked simply and sadly, "I'm scared as hell because I can't fix this and I can't bare to see you in pain. I don't want anything to happen to you." As I begin to cry he scoops me in his arms and the sobs I had been holding at bay unleash. He strokes my hair and back and in shallow whispers I begin to let all my fears out and my heart breaks into a thousand pieces.
This is so unfair. To my children, to my husband, to my patients. I am angry now. What if I can't control this the way I want to. The way I need too. I want to live and full and happy and healthy life and be able to see my children grow up. I want our lives to focus around THEM not this stupid disease. I don't want Ryan to spend his years taking care of me ultimately pushing me around in a wheel chair because I've become disabled.
Disabled. Holy shit. He didn't sign up for this. This is NOT how this was suppose to happen. I am in complete anguish at this point. We were supposed to get old and do old crotchety things together like traveling in an RV and bird watch and walk hand in hand down at the lake. This was NOT part of the deal.
Why is this happening to me? Im angry again. My life has been quite an adventure to say the least. I'm honestly ready to just be boring. I don't want anymore. I've had enough. Can't I catch a damn break? I'm not mad at God per se.... but each time I pray, I don't even know what to say. My prayers end up some sort of version of this...
Dear Heavenly Father, Thank you for this beautiful day and all the amazing people you have put in my life. Thank you for blessing me beyond measure in so many ways. Can you please take away this pain? Can you please take away my disease? Can you please give me back my old normal? I'm not sure I know how to handle this...... please. Amen.
All the things that have been taught to me through my christian life flow through my head (God doesn't give you more then you can handle. Lean on him for he will be your strength. blah blah blah) None of them provide comfort or healing for my aching heart or over active brain. I am consumed with pain and fatigue and pure confusion. Please God help me. But I can't stop long enough to listen.
As the tears finally subside, Ryan begins to reassure me that he will gladly push my wheel chair if it ever comes to that and we can bird watch on the deck of the lake together hand in hand. He kisses my forehead sweetly and says he will do whatever it takes to make sure I am happy and he will never leave my side. He doesn't have an answer to the why, but holds me close and says to stay strong in Lord and keep praying. He says we will get through this together. As a family. More tears come, quietly now, and we lay together in the dark reveling in the moment that has finally come to pass.
This sweet, tired man has confided in me and comforted me beyond belief. As he drifts off to sleep I lay staring at his figure in the dark. I can't help but lay my hand on his chest and listen to him breath. I'm scared to death of Thursday coming. Thursday is the day he goes back to work. It will take him away from me for two weeks. I am so thankful he has been by my side for the hardest weeks of my life to date and relieved his mother is coming to stay with me while he is gone. I think in my mind, "Maybe he will rest, not having to take care of me," but I know in my heart it's a lie. He will worry and count the days until he comes home, just like I will. God, thank you so much for giving me this wonderful man.
As the birds chirp and 6AM rolls around, I know its time to start my day. I am thankful for the tears that have come this night and into the early morning. My heavy heart needed the release. My sweet fat pumpkin, Ryker, begins to stir in his room and it's my que to finish up my thoughts and put my worried mind to rest.
I love you Ryan Wilson. Thank you for being my rock. I know I will over come this and together we will be ok. A new ok. It will never be the same ok as it was before, but somehow, someway, we will find new path.
--Warrior
Tuesday, October 16, 2012
Day two... I Think I am Feeling Better :)
Yesterday Sweet Shaky Suzanne mentioned some of the side effects of the steroids.... one of which was (for lack of a better term) 'roid rage. WHAT?!?!?! shit. My emotions are already all over the place, like I need to add MORE anger to the mix. All I can say is beware! The long over due post on what it feels like to find out you have MS and be in severe pain will be coming soon and I'm sure it won't be pretty. And poor Ryan, bless his sweet heart. We talked briefly about it yesterday but he got a small taste of it this morning as I fussed him over trying to remember stuff. If any of you know my husband personally, you know that remembering detail is not his strong suit unless it has to do with helicopters, war stories, or drinking mishaps with friends. Ridiculously frustrating but not likely to change any time soon.
After my appointment we headed to Chick-Fil-a for a quick bite. Ryan of course taunted me by ordering an Oreo shake!! RUDE!! I drooled a bit, then ate my spicy wrap with visions of delicious Oreos in my head to keep my 'roid rage at bay.... LOL.
I must say, I honestly am feeling better. My inner warrior is finally waking from her coma. I can't wait until she is fully awake, head poised high, full armor on, and ready
TO KICK SOME MS ASS. I WILL make it my B*!#H and never let it control my life again.
---Warrior
Monday, October 15, 2012
Today Is The Day!
So, it has finally arrived! I am at sitting here in the out patient clinic receiving my first dose of IV steroid therapy! The metallic taste that has crept into my mouth is nauseating and I'm slightly chilly. My nurse, Suzanne, is wonderfully plump and has a slight tremor. (Kinda scary when she stared the IV, haha) As Ryan and Ryker sit beside me, I try to read but my eyes are so tired. Instead, I end up here -up-dating the blog and half sleeping between each sentence.
I didn't really eat before I came, which I quickly realized was the worst mistake ever.... I feel awful :( Ryan suggests we make a sonic run when we are done so I can get a milk shake. I immediately perk up (HELL YEA!) only to be brought back to reality by Sweet Shakey Suzanne ..... "Unfortunately, you need to avoid things with excess sugar while you're on this course of treatment. So, things like desserts, fresh fruit, soda and excess carbs are off limits." An amused smile plays on her mouth. "That's like.... My whole diet." I reply as I hang my head. Inside I'm screaming, DAMN IT!!! This shit BETTER be worth it. She chuckles and Ryan just shrugs. LAME SAUCE. Now I'm back to being lethargic with visions of any and everything sugar related taunting me.
I'm pretty sure the chocolate chips cookies the girls made yesterday kept calling my name........
I didn't really eat before I came, which I quickly realized was the worst mistake ever.... I feel awful :( Ryan suggests we make a sonic run when we are done so I can get a milk shake. I immediately perk up (HELL YEA!) only to be brought back to reality by Sweet Shakey Suzanne ..... "Unfortunately, you need to avoid things with excess sugar while you're on this course of treatment. So, things like desserts, fresh fruit, soda and excess carbs are off limits." An amused smile plays on her mouth. "That's like.... My whole diet." I reply as I hang my head. Inside I'm screaming, DAMN IT!!! This shit BETTER be worth it. She chuckles and Ryan just shrugs. LAME SAUCE. Now I'm back to being lethargic with visions of any and everything sugar related taunting me.
I'm pretty sure the chocolate chips cookies the girls made yesterday kept calling my name........
Sunday, October 14, 2012
Where Do I Go From Here.....
So, just like that, my ophthalmologist washed his hands of me and I was left to figure out Where do I go from here? A very good friend directed me to a neurologist and the next week was spent tying to deal with the pain and vision loss on top of numerous phone calls and waiting. Lots and lots of waiting. My appointment with the neurologist could not come fast enough.
Each day my sweet husband did anything and everything he could for me. He would wake up early daily to get both kids to school and take me to and from work when I needed to go. His mother even drove in from Louisiana to help us hold down the fort. She cooked, cleaned, took care of the kiddos, did laundry and anything else she could think of. She even bought us a deep freeze.... HAPPY HAVING MS TO ME! Ryan and I were so sad to see her leave.... My family in AZ called me multiple times a day offering to help in any way necessary. I found my self surrounded by so much love and support that it comforted me beyond belief.
By the time my appointment rolled around I was a serious emotional mess. If I wasn't working, I was half comatose. If I had a second of clarity I was researching MS and trying to gather my "list" of questions and concerns for the doctor. My emotions gave me and everyone around me serious whip lash. If I wasn't crying, I was angry as hell. If I wasn't angry or sad I was numb. My range of emotions is a whole other blog in itself......
As Ryan, Ryker and I entered the office of Dr. Philip Blum my stomach was in knots. I had a million questions running through my head, "Was he going to listen to me? Was he actually going to talk to me? Maybe he will tell me it was a fluke..." From the moment he walked in the room, I was immediately at ease. He was absolutely amazing. He talked extensively with me about what led me to see him, symptoms I had now and in the past and many other things. He also did a very thorough exam and explained each one to me. In the end he took the time to show me my MRI and answer EVERY SINGLE QUESTION I had written in my little blue notebook. He encouraged me to do research on my disease and directed me to the best (and only) MS websites I should visit. I left with a sense of peace, knowing that I had a forward plan and my health care was going to be in amazing hands.
So, where DO I go from here? Since my "flare-up" was so severe I am scheduled to do a course of IV steroids at an out patient clinic for three days. Dr Blum is confident that this will help me reclaim my life and get my vision back. It will take a few months for it to fully recover but Ill take that over what I have now any day. I'll go back to see Dr Blum in a few weeks and we discuss the option of medication. I'm still not sure how I feel about having to be on a daily medication for the rest of my life, but I have plenty of time to decide.
In the mean time, my dear chiro friend, Dr Stagenwald, dropped her whole life, packed up her three kids and drove to Houston from the Dallas area to work on me. She has been doing a technique on me called menigial decompression and helping me sort out my nutrition and diet. SERIOUSLY? How blessed am I?
I obviously have a lot to sort through and I am still overwhelmed and in pain BUT at least I have a plan and
I have decided:
I WILL LEARN TO DEAL WITH THIS DISEASE. I WILL NOT DIE FROM IT OR BECOME DISABLED FROM IT.
I AM A WARRIOR.
Each day my sweet husband did anything and everything he could for me. He would wake up early daily to get both kids to school and take me to and from work when I needed to go. His mother even drove in from Louisiana to help us hold down the fort. She cooked, cleaned, took care of the kiddos, did laundry and anything else she could think of. She even bought us a deep freeze.... HAPPY HAVING MS TO ME! Ryan and I were so sad to see her leave.... My family in AZ called me multiple times a day offering to help in any way necessary. I found my self surrounded by so much love and support that it comforted me beyond belief.
By the time my appointment rolled around I was a serious emotional mess. If I wasn't working, I was half comatose. If I had a second of clarity I was researching MS and trying to gather my "list" of questions and concerns for the doctor. My emotions gave me and everyone around me serious whip lash. If I wasn't crying, I was angry as hell. If I wasn't angry or sad I was numb. My range of emotions is a whole other blog in itself......
As Ryan, Ryker and I entered the office of Dr. Philip Blum my stomach was in knots. I had a million questions running through my head, "Was he going to listen to me? Was he actually going to talk to me? Maybe he will tell me it was a fluke..." From the moment he walked in the room, I was immediately at ease. He was absolutely amazing. He talked extensively with me about what led me to see him, symptoms I had now and in the past and many other things. He also did a very thorough exam and explained each one to me. In the end he took the time to show me my MRI and answer EVERY SINGLE QUESTION I had written in my little blue notebook. He encouraged me to do research on my disease and directed me to the best (and only) MS websites I should visit. I left with a sense of peace, knowing that I had a forward plan and my health care was going to be in amazing hands.
So, where DO I go from here? Since my "flare-up" was so severe I am scheduled to do a course of IV steroids at an out patient clinic for three days. Dr Blum is confident that this will help me reclaim my life and get my vision back. It will take a few months for it to fully recover but Ill take that over what I have now any day. I'll go back to see Dr Blum in a few weeks and we discuss the option of medication. I'm still not sure how I feel about having to be on a daily medication for the rest of my life, but I have plenty of time to decide.
In the mean time, my dear chiro friend, Dr Stagenwald, dropped her whole life, packed up her three kids and drove to Houston from the Dallas area to work on me. She has been doing a technique on me called menigial decompression and helping me sort out my nutrition and diet. SERIOUSLY? How blessed am I?
I obviously have a lot to sort through and I am still overwhelmed and in pain BUT at least I have a plan and
I have decided:
I WILL LEARN TO DEAL WITH THIS DISEASE. I WILL NOT DIE FROM IT OR BECOME DISABLED FROM IT.
I AM A WARRIOR.
Saturday, October 13, 2012
The Story Behind "The Story"
When I originally got sick, I thought it was just your run of the mill flu.... never did I imagine that one week later my life would be forever changed. As I sat in the ophthalmologist office with Ryan at my side I began, for the first time, to get really scared. My doctor rushed in and out and did a lot of tests that I had never experienced before (and I've been to my fair share of eye doctor appointments). When he started asking me who my primary care physician was and told me to IMMEDIATELY go get an MRI, I knew it had to be serious. It was at this point that he discussed the possibility of Multiple Sclerosis. He said I definitely had Optic Neuritis but needed to find out exactly why. I remember sitting on Ryan's lap in one of the waiting chairs my face and head pounding wondering, "How in hell did I end up here and could MS really be the underlying cause of ALL this pain?"
Now, let's back track a few years.... When Ryan was in Afghanistan in 2010 I had went to a retinal specialist to check my eyes. Many years ago I had surgery to re-attach my retina in my left eye so I make it a point to always follow up. At this point I was seeing weird flashes of light so I was concerned maybe it was detaching again. My eye doctor said there was no evidence of retinal detachment but she did see something called snow banking syndrome in my right eye (uveitis). She said it could be associated with MS and I should go check it out. I, of course, ignored her. After Ryan came home my PCP also encouraged me to go get an MRI just to make sure. I, once again, ignored her.
Fast forward to now. SHIT!! Why am I so stubborn? Part of it was me just not wanting to know... (that's a really heavy diagnosis).... another part was me truly thinking I was invincible. MS? Me? No way in hell. I am perfectly fine...... Never mind my clumbsiness, fatigue, numbness and tingling in my arms, constipation, uveitis, and constant pain. Those are all symptoms that can be contributed to sooooo many things.... right?
Once I got the MRI of by brain it was nothing but a waiting game really. All I needed was the confirmation from the doctor. As the weekend ticked away my pain grew worse and my heart grew even heavier. As I looked back at all my symptoms and researched about the disease the call I had been waiting for was inevitable....
"I'm sorry Mrs. Wilson. You indeed have MULTIPLE SCLEROSIS. There is nothing more I can do for you. Please find a neurologist."
holy shit.
Now, let's back track a few years.... When Ryan was in Afghanistan in 2010 I had went to a retinal specialist to check my eyes. Many years ago I had surgery to re-attach my retina in my left eye so I make it a point to always follow up. At this point I was seeing weird flashes of light so I was concerned maybe it was detaching again. My eye doctor said there was no evidence of retinal detachment but she did see something called snow banking syndrome in my right eye (uveitis). She said it could be associated with MS and I should go check it out. I, of course, ignored her. After Ryan came home my PCP also encouraged me to go get an MRI just to make sure. I, once again, ignored her.
Fast forward to now. SHIT!! Why am I so stubborn? Part of it was me just not wanting to know... (that's a really heavy diagnosis).... another part was me truly thinking I was invincible. MS? Me? No way in hell. I am perfectly fine...... Never mind my clumbsiness, fatigue, numbness and tingling in my arms, constipation, uveitis, and constant pain. Those are all symptoms that can be contributed to sooooo many things.... right?
Once I got the MRI of by brain it was nothing but a waiting game really. All I needed was the confirmation from the doctor. As the weekend ticked away my pain grew worse and my heart grew even heavier. As I looked back at all my symptoms and researched about the disease the call I had been waiting for was inevitable....
"I'm sorry Mrs. Wilson. You indeed have MULTIPLE SCLEROSIS. There is nothing more I can do for you. Please find a neurologist."
holy shit.
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