Monday, June 30, 2014
Want to hear a funny thing that happened to me today!? Okay, I went to a medical supply place for a pelvic belt (to stabilize my pelvis on bad days) I hate to say it but the lady working there reminded me of Cruella Devil, She had quite the attitude. She finally stormed out of her office (literally) and came to talk to me because the girl up front didn't know what to do... The Lady: What is the reason for this? Me: to help stabilize the pelvis due to joint hypermobility. The Lady: Oh so you don't have any bones in your pelvis. (I would like to add I was standing in front of her) hahahha It was a good laugh at least! See my crazy life brings me joy and keeps me entertained :)
I am in pain tonight my SIJ joint is acting up... the problem is when I walk my hips are extra flexible due to joint hypermobility so it makes my frame unstable and my joints are super creaky and grindy, yuck! Thank goodness for kinesio tape! I googled how to tape the SIJ joint and managed to tape it myself and it definitely helped!! basically tape the side of your hip/leg with this shape: * Should be about 4 pieces around6 inch strips of tape.... but don't hurt your shoulder muscle while doing this like me hahah! tomorrow off to Mesa for physical therapy! I am building anxiety due to the excessive heat and my blood volume. Today was rough but I survived God is showing me many signs it will be okay, and to keep on moving forward! I am a Fighter not a quitter! Fight on, even when you feel you no longer can! xoxo- Chelle
Friday, June 27, 2014
OH boy Folks! I am doing some serious digging into the Driscol Theory and my POTS/Dysautonomia... in a lot of cases patients with mast Cell disorders treat the mast cell and their POTS/Dysautonomia gets better....Every thing she talked about in her videos I totally know she is spot on with things! She explains how I feel perfectly and what goes on in my body! (She herself has E.D., and POTS Dysautonomia, and I think Mast Cell) So I did digging into myself, and I have my list of foods to avoid:
For more info about the Driscol Theory and Dr. Diana Driscol :
Wish me luck! I hope you are feeling well today! God loves you! xoxo-Chelle
- Shell Fish
- Some Nuts
- Some Cheeses
- UNCOOKED egg whites
- Fermented Cheeses
- Fermented veggies
- Cheddar Cheese
- Parmesan Cheese
- Brewer's Yeast
- Canned Fish
- Finned Fish
- Aged/Processed meats
- Left over meat or fish(left in the fridge is a no no! if you freeze left overs then cook them it is okay.... Mast cells grow in the meat while sitting in the fridge)
For more info about the Driscol Theory and Dr. Diana Driscol :
Wish me luck! I hope you are feeling well today! God loves you! xoxo-Chelle
Wednesday, June 25, 2014
I am still not doing very well at all... So I haven't posted as often because I don't have a whole lot to say unfortunately.... but today I want to discus the topic of 'but you don't look sick'... I guess you could say its a good thing and I am SO lucky I don't look sick. Well sometimes I am sure that is true but most of the time I find it works against me, very much. For instance at doctor appointments, "Hi, doc I am sick with everything" .... doctor: "you look perfectly fine, you don't seem sick to me" (try getting doctors to believe you when they can't see how sick you truly are) then there is the occasional family member or friend that just always tells you to be positive! Yes, because every patient with an invisible illness or any illness is just simply, well negative.... NOPE! My attitude is not what is making me sick.... but hey! we know they mean well in their hearts:) Then today I had a new one happen at the MVD while getting my handicap sticker thing.... the lady gave me a quiz... she asked me a million questions about what is wrong and why and her remedy for me was to have my mom take me everywhere....I have that due to the heat and I get very ill in the heat so even if my mom drives me I can't get too hot for any length of time, and I am 21 years old! I would like some form of independence! Plus I am not one of those kinds that mom does everything for me, yes she takes good care of me but I really like taking care of myself as much as possible and she works a full-time job.... AND my all time favorite is when the elderly tell me how lucky I am to be younger and healthy ... I just have no clue what it is like to be older and falling apart... true, I do not know the older part but I get the whole falling apart part. (I always just smile and laugh) Or when someone tells you, "you just are using it as an excuse" Excuse me! that is just plain rude no excuse for that one. I guess people just don't understand. Honestly how can they? Unless they have experienced a similar situation. Right? They just don't know....I am not perfect and I am working on this too... let's just not judge the book by its cover and spread love to everyone! xoxo-Chelle
Monday, June 23, 2014
A Michelle Medical update:
Today is definitely Monday... I am still not feeling well at all, called my pcp Friday and they contacted me that afternoon oh, wait I contacted them and made them talk to me and the MA was suppose to call me back... She didn't... Monday morning 8 O'clock I call and leave a message to call me back and I did get a call back however I can't get in until next Monday and they are confused on what my neurologist wants me tested for(he wants me to be tested for basic infections) to rule out any such thing to be causing any symptoms.... my symptoms are pretty much anything and everything, but the biggest ones are my tummy is very upset and hurting and I live with nausea, I have massive migraines nightly, I am very fatigued, some nights I don't sleep really, and the list goes on and on... So I call my neurologist and left a message for the nurse explaining the situation... and the lady on the phone reams me for calling.... since when is it a problem to call a doctor's office? Instead I have to send an email, wait 2 days for a reply. then I reply and it is the same process over and over. My symptoms have been worsening for a month now... that is very scary since I was assured I would not get worse. Spending the day with a frustrated sad heart but I know the Lord is with me and he will make it all okay... it's a good day to listen to hymns....
Wednesday, June 18, 2014
The truth about life is, it is real, it is raw, it can throw us all around in all sorts of different directions. Bad things happen unfortunately but we agreed to live with these "bad things" before we came here on this earth. The devil wants us to forget this and he wants to torment us through worry, anxiety, he wants us to run from our Father in Heaven. He wants his evils to lurch upon us until all that is left is him and us. He makes our minds wander no good thoughts. He bring upon us doom. The good news is we have a Father in Heaven and with him we can create a shield against evil. All Evil. The devil looses all his power when you practice good faith, follow the commandments given, choose the right, and always stand by your lord and redeemer Jesus Christ. When those things are practiced all things we can handle, we will be given the strength in any situation. We will have peace, and everything will be okay! Read those scriptures, pray unto the lord, he is there listening and waiting to comfort and guide you into your eternal purpose. We all have a purpose here, even when it seems like everything is wrong and nothing else could possibly get worse.... for me, that is my personal cue that I am in trouble and I need to cling unto my faith and the lord. When I feel so down that I can no longer stand, I pray. He is always there with big open loving arms, each and every time... it never ever fails.
Last night I realized something that shocked me... I had quit working on my book of faith, I quit looking for those "sticky notes" I know my redeemer leaves for me always... I had basically in my state of grieving quit doing all things that I know would make things okay again. Things that would put my broken puzzle of a heart back together... I quit praying for tape and glue to fix this brokenness inside me physically and mentally. ( yes I literally pray for tape and glue). In this moment of realization I had a whole different kind of realization, by doing these things the devil was lurching up on me. and worse I had given him the power to... But being human we all make mistakes, I feel what is important is how we fix those mistakes and avoid them repeating later... I felt shocked in a sense and very upset at myself.... then I went into "okay lord what do I need to do"... he answered me: to work on that book of faith. I at the time in such sorrow thought: "I need to do that but why? What would be the point a book could not fix this?"... As I worked on the book word by word, in my shaking ugly hand writing, I learned I was VERY wrong. That book did help me and it helped me sooo much I can not describe it... it fueled my will to keep going. That book took all my worries away, the entire time I worked on it...The anxiety lessened. The pain and suffering, not such a burden and let me tell you I slept wonderfully last night. Tonight I did the same thing, worked on that book and I feel so surrounded by love and goodness. It was a choice. I am glad I chose to follow God's ways and I am just so blessed. being sick is soo awful. it really is! but I have learned such a large amount of goodness from it that I would go back 8 years ago and choose it. I would choose to be sick if I had that choice... know what's funny about that statement? I did have the choice in the pre existence. I chose this. I chose this body, this life. I have such a wonderful family and such a wonderful Love for me in Heaven. I am blessed to have angels at my wayside when times are tough or just simply overwhelming. They are there and they comfort me. Just like God and Jesus do. Through the Holy Ghost. My brain can not contain it all, it is such an amazing thing to me. I am so lucky. Being sick is probably the best thing that has ever happened to me even though it also has been the worst. If my mantra is true and trials truly do bring the biggest blessings in life.... then trial on I will. In humility with goodness in my heart.
Doctrine and Coventants:88:63
Draw near unto me and I will draw near unto you;
seek me diligently and ye shall find me;
ask; and ye shall receive;
knock, and it shall be opened unto you.
What an amazing message from our Lord! He knows we have hard times and trials. He knows our frustrations. He knows sometimes we just need to find ourselves again, to become better and stronger beings. His love is so deep for us. for me and for you. And our love equally, unto him.
Life has been mean and unfair to me for years now... I have a million different emotions and opinions of it all, all my own... Living with a rare disease stinks, that's probably my biggest feeling right now. Why does it stink? ...#1 I miss having fun and living a life (as above shows me and my sister messing around having fun) A.) no doctors know about it. B.) They don't even know what the cause of my symptoms are or why they are even happening. C.) There are no exact medications for POTS/dysautonomia, all the medications used are borrowed from other diseases. D.) because doctors are so unaware I have gone 8 years without help. D. (part two) I got and still get called crazy or anxious or I am just simply depressed which is pure ignorance. E.) I am not in any serious danger really but my body thinks it is and I feel so awful, but I don't get medical help from specialists until patients in worse shape than me get their help (I totally understand that) but it still really stinks when you are miserably suffering day in and day out. I feel like hey don't my symptoms matter? Don't I deserve some form of life? besides being at home day in and day out miserable... It just has been bleak. My heart is hurting but I do know trials bring the biggest blessings in life, that being said my trail must not be over because things are not okay yet. I am trying to give my burdens to the Lord but it is hard, I am an overachiever: and that applies to worry I overachieve in that too... haha the Lord is understanding and I am trying... things will be easier one day, today isn't that day but I know that day will come. I am in fact never alone. and I hope if you are out there dealing with any form of sickness, that you know I care and I believe in you and that prayer works... pray heavenly father hears your words happy or broken-hearted. When no one is there and you feel all alone and no one is there to talk to, he is. When no one can fix you because they simply can't no matter their words of encouragement....he can. he is there. He will give you strength daily. I used to pray, "Lord I need thy every hour" now I Pray, "Lord I need thy every minute"... and some awful nights I pray, "Lord I need thy every second." He is there he sends me hope and help. When I hit rock bottom and feel as if I can not take another second he doesn't necessarily take my sickness away but he does send me strength and comfort. I know he is there no matter what. Heavenly Father loves each and everyone of us, we just have to let him, trust him, and have faith that he will make everything okay.
I have done yoga in the past and I always love it so today I decided to look for new yoga videos on YouTube. I found this one & I super liked it a bunch.... I am deconditioned and I handled it (surprised myself) and it totally de-stressed me. I am sure anyone in this world could use some de-stressing. Especially if you are ill in any way shape or form I think relaxation is important. I have such a hard time with stress and relaxation because of my Dysautonomia/POTS but this is definitely a new tool in the tool box... give it a try you might just love it too! xoxo- yours truly, Chelle
Monday, June 16, 2014
Happy Father's Day to all dads.... yesterday I was blessed enough to feel good enough to enjoy time with all my family. It was soo nice! Considering the days before that I could barley walk, that is not very fun to go through... This picture is from a few years ago, but it feels like we just took this picture yesterday... one thing that never slows down is time. So thankful for my time with my Dad!
Friday, June 13, 2014
going to let you in on a little secret... I have been grieving my new POTS/Dysautonomia/mass cell activation ... I just started feeling really down about it. I haven't quit but I feel like a huge part of me will never be that same girl again. & I want her back! I Don't miss the big things that used to be in my life (even when I was sick then) like going to school or cheer or dance, parties, vacations.... I miss the simple things, family time, putting my makeup on, doing my hair, taking a shower, cleaning the house, running to the store for a few things, people those are the things I truly miss the most... I just have felt defeated and probably being extra sick than normal sick is not helping the situation. I am suffering from just about anything and everything in waves right now. I have insomnia again and lots of awful pain.... which gives me anxiety because one time I went a WHOLE week without any sleep! It's the most excruciating thing ever!! Don't ever try it! so some old trauma likes to sneak up on me too.... however tonight I was struggling with my faith, (as embarrassing as that is to admit) and when I say faith I mean I lost hope for my life, all I could see was it was over and nothing would ever get better. I know God is there and Jesus and the Holy ghost deep in my heart but I have felt a distance all week. I have been angry all week, Where are you! I need you! don't you know I am suffering mentally and physically! and I finally realized. it's me. I am the one being distant. Because I am grieving I wasn't in tune with the Lord, almost like I had my back to him, so I couldn't see him... but I was desperately searching for him. Tonight from suffering from a million symptoms I am awake and on my computer (only source of distraction at times like these) I happened to look at my Facebook page, and the song popped into my head the second I hit my page. My song "never alone" Lady antebellum, a beautiful tender mercy from my past. so I played that song on YouTube super fast and continued scrolling down. As I was scrolling down I looked at my posts for the past few months and I realized what am I doing? I am a fighter! I have the Lord on my side & in my heart! I am a positive person who never chooses to let being sick defeat me! WHAT am I doing to myself!? and I had a huge reality check that my grieve is causing so much more grief in my life. It is perfectly okay to grieve.... but the actions (emotionally/mentally) I have been practicing are not. They are what defeat me. I am what is defeating me. I can win this God is right there I just have to turn unto him and let him be involved. He is there! He is helping me! he is being patient, I am so thankful for the tender mercies I constantly receive in my life. The struggle is there but the reward is there too. Thank you Heavenly Father xoxo- your daughter-Chelle
I am in LOVE with this video it is sooo informative and tells the whole picture not just bits and pieces! This is What I have after 8 years of being misdiagnosed, last month I was diagnosed properly for the 1st time! It is not a fun thing to have and I am very much suffering from this beast right now as you can tell from earlier posts. My life 360'd I don't have much of one in the normal ways, this disease deserves more much more attention! and Doctors need to know about it! #POTSawarness #dysautonomia
Thursday, June 12, 2014
|This is where I will be today on my slanted bed with my cold wash cloth and well that bottle is my medicine (Cromolyn sodium) .... long day.|
Neurology emailed me back, they are having lots of similar emails from other POTS patients this heat makes it worse.... Great! The RN said to up my sodium and fluids! yikes! I am feeling awful today and in fact I was getting worse and worse but my slanty bed seems to help. I think I will be here for a long while today. waiting to hear from on of my neurologist colleges (another neurologist) for help... if you have POTS and don't already know this... please stay out of any heat (I already knew that) I got hot a week ago walking into a restaurant.... not a whole lot of control when you are out of town, you have to eat. I just keep getting worse since that incident and I haven't been outside since. (well I go out in the evenings or early mornings) It is cool then where I live. praying and praying for help! POTS patients my heart goes out to you!! xo-Chelle
I have a lovely part time neighbor who is a massage therapist and last night she was kind to me. She did a cranial-sacral massage on me. And I am So very thankful to her! A cranial-sacral massage is a massage that is very light to the touch they just barely touch you to get the fluids moving and all those energies. It relaxed my stressed out body and I was like this rocks so much! My brain had a lot of issues going on haha and the pressure that goes through your spine (I suffer from lots of spinal pain) from the top of the neck to the sacrum. It made my body just calm down, which is something that is nearly impossible for me. but about an hour later I was SO miserable and in soo much pain, I couldn't even handle it. My body came back with a vengeance! My little angry body just went into fit mode or something and I was in pain, tremoring, my eyes kept rolling backward. I can not even begin to describe the whole ordeal. I was very nauseated and had to pee a lot oddly and I just laid on the bathroom floor and cried.(because I was so sickly) I am now so scared about my long ordeal last night- it lasted for hours! It was one of my worst nights ever. Every time I try to do something to help myself it seems to backfire on me... wish my body would just start working right again! Some times I wonder if this mangled up broken thing will ever be healed... but I know to pray, and have faith. If I don't get well he will help me to get through this, he will make it okay. We can do all things through Christ and God. They are there. They know my sufferings. I also know they can and will in time take them away... and everything will be okay <3
Wednesday, June 11, 2014
Tuesday, June 10, 2014
Though I feel sad about my new diagnosis and frustrated... something inside of me keeps fighting, it always does. I keep trying exercises and being up on my feet. I keep going for my short evening walks down the street and back I continue eating 10,000 mg of Salt a day. I drink 85-100 FL oz. of fluids a day (half electrolytes) I keep fighting because, what would quitting get me? I would be more sick I am sure. So as hard as it is to fight and carry on at times like this. I just keep going because I will get there someday. no quitting. quitters always loose. Hold your head high and just keep on going. There are going to be better days ahead you got this! keep the song Roar by Katy Perry in your head....I got the eye of the tiger fighter dancing through the fire cause I am a champion and your gonna hear me roar!(I hope those lyrics are right) lol something I struggle with now is remembering lyrics.
Monday, June 9, 2014
I learned a lesson today, "things can always be worse, we have to fight to make them better." (or open our hearts)
Tonight I was feeling very anxious over being so ill stricken. Sometimes I feel like it hits me all at once and I am staring all my biggest fears of being sick straight in the face. Believe me that is very frightening! So I prayed and asked not to be healed but for the ability to make it through this night(I felt I couldn't possibly take another second of it all) a few minutes later the anxiety worsened...I had a feeling to turn Pandora on and listen to Jesus music as I call it a.k.a. Hilary Weeks channel...(her music clicks with me and puts my emotions in place and good spirits in my heart.) So, I grabbed my trusty laptop and my mom was confused for I was laying on the couch, feeling awful and I randomly got up to get my computer ... I turned on Pandora and Find Me by Hilary Weeks is the first song...It was exactly how I felt I wanted Jesus to find me in my dark hidden corner of that moment of life... hearing that I cried my bad emotions out and felt a huge surge of reassurance he in fact had found me and heard me.... My angel who is always there is bad times a.k.a My Granddad who passed nearly six years ago came (he hasn't visited in a while and I suppose it's due to my sick cousin and he needs to be there, I am more than happy to share him) and I just automatically knew his presence was there and I automatically stopped crying and felt a wonderful calmness and peacefulness overflow me. oddly enough my mom woke up saying, "What" (I didn't say anything).... she said you said my name... I simply looked her in the eye and said I call you mom but granddad is here so I am sure he just wants his presence known.... after I calmed and I could tell he was gone a few minutes later I knew I needed to read my scriptures... I had a feeling to read a random page and it ended up being " The Acts:1:7 and he said unto them, It is not for you to know the times or the seasons, which the Father hath put in his own power." ... at the moment I felt it was a sticky note saying... I need to not worry how long I will be sick and make myself suffer over time lines if healings or not healings.... God is in control and I must trust him....and it was a sticky note for me... I know reading it over he was speaking about the restoration of Israel... but I do have moments where I comprehend things in a spiritual moment and I know it is a total and complete sign from God for me to follow. I feel so blessed and grateful and loved. -Chelle
Saturday, June 7, 2014
I apologize for not posting for a few days... I have had so many emotions, I could not even sort them out long enough to post about them. This past week has been wonderful in so many ways. O started gaining strength and feeling a little better for days in a row! Hallelujah! I was feeling soo very blessed and I just kept putting all my fears and worries into the Lords hands. I decided I was just like okay I am going to give him all this negativity and all this fear and anxiety. It was harder at first and got slowly easier but from the second I did that I didn't necessarily feel physically better but my heart felt like hey I can do it and it will really be okay in the end. He's got this! and through out my week I was on cloud 9 or I was upset or I was scared or I was feeling a little depressed and overwhelmed. I was like minute to minute changing how I felt. And I was really frustrated with myself because I kept going Michelle you should be happy you are making improvements! Years of hard work and misery is paying off! be happy! but I was still everywhere... When you start making improvements it feels foreign, you feel really uncomfortable, like something major is missing. Then you feel sadness because everything is changing and wait a minute what am I suppose to do?! Then you feel scared to trust in feeling better at all, because you are scared it will come back and you will have jinxed it. Then after that you feel sooo happy because you walked down the street to the stop sign! The sadness sinks in...did I really just feel so happy over walking down the street to the stop sign. Is this real? I am that weak and sick, I knew I was really sick but I am this sick? How will I ever be anything or recover from all of this? will I ever be okay again. except I knew the answer to that last part I know I will be Okay. I have been told it a million times by my heavenly father... I just know I need time... so after days of being at home and this happening.....I went to physical therapy! ( I went the longest in between visits ever) Therapy was great we were all thrilled I was finally making some sort of real progress after 2 years! Then, something happened, I walked into the restaurant in 105 degree heat. In the time it took me to get into the building I was not okay. I felt like I was so fatigued things were numb. I felt woozy and dizzy. I felt like I was passing out. I felt AWFUL! So my mother got me fluids and we dumped electrolyte tablets in it and fed me salty foods and I took salt tablets. I finally popped out of it. (how embarrassing) and it was time to go right back out... So my mom picked me up at the curb and it helped but the rest of the day I was soooo tired from that "episode" After this is was all down hill really. My body started to feel like it was shorting out or something not working. I got a little cold and shivered for hours (air conditioning cold). I got hot the next day and had to go through it again but that time didn't seem as awful...however followed my the worst stomach ache in the world. nausea. fatigue. headache. freezing cold/burning up. pain everywhere. numbness. Shaky tremors. grouchiness. It was awful I cried my eyes out over pain and misery last night. I just kept praying to be able to get through this and be safe. Heavenly father did it he got me fluids and salt and I fell asleep not too long after this "I think I am dying sick" kicked in. (it really feels like you are so sick you must be dying, because no one could feel this bad and not die) and I just woke up...well I woke up quite a bit last night. I am doing better not in dire pain. not feeling like vomiting. My stomach seems okay knock on wood. I still feel shorted out and like things aren't working quite right in my body. I feel extremely fatigued physically. my spine hurts pretty bad. my muscles all feel like bruised because I tremmored and shook for so long. My eyes feel dilated still. It is crazy but I am better then last night. last night was awful! I hate the end of a good streak but I have faith it will come back again. here is the better news (sarcasm) my neurologist is out of town until the 16th ahhhh! that made me more nervous last night but I do know there are other neurologists on call but he is the guru of what dysautonomia and the nervous system so I just am like hey get back here! haha and I lost an amazing doctor due to him being very ill last year unexpectedly and then another doctor I had passed away so phew I get nervous when someone is helping me I feel like telling them to be safe and lecturing them haha but I would Never! do that! anyways that is where I am stupid killer heat! and stupid Postural Orthostatic Tachycardia Syndrome! and stupid Mass Cell Activation! Okay I am done...have a beautiful weekend! stay safe and if you are sick my heart goes out to you! Pray!-Chelle
Tuesday, June 3, 2014
It was in the simple moment of making a grilled cheese for lunch... I was thinking deeply about the hard day I was having and I had noticed the bad health day was not tearing me apart... though I had a small heartache, I should of had a heavy heart as normal in these tough, trying days. Something was different today.... It was in the moment of realization while making that grilled cheese, that my heavenly father was literally carrying me today he is taking that singe of pain away and I just had the strongest reassurance it was him. He didn't take the sickness away but the pain, the worst part. He was carrying me through this hard day so I would not have to fight through it. He had answered my prayers once again. and in this very moment I could not help but to cry in gratitude for my savior and his love for me. That he would take my bad day and get me through it with out that deep hurt. He took it from me. For me. I am so thankful for moments like these when I know so strongly in my heart my savior is there. God is there protecting me, watching over me always. I am going to go eat that grilled Cheese in reverence. The best grilled cheese in my life ever!
Monday, June 2, 2014
Life with Postural Orthostatic Tachycardia Syndrome...Half of my fluid intake has to be electrolytes. Looking at this massive pile of Gatorade makes me cringe a little. No a lot... I was taking Nuun Electrolyte Tablets but for some lovely reason they make my stomach sick... You would think that would have happened in the beginning of taking them... no my body has to do every thing the hard way :) I also drink 32 fl. oz. of water mixed with one of my medicines Cromolyn so between that and the Electrolytes doesn't leave a whole lot of room there. I have to admit this disease/diseases are so overwhelming...