Keep on Keepin On

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

I am doing what????

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:
Histamine foods:

• Chocolate
• Shell Fish
• Some Nuts
• Tomatoes
• Some Cheeses
• Milk
• Wheat
• Strawberries
• pineapple
• UNCOOKED egg whites
• Fermented Cheeses
• Fermented veggies
• Cheddar Cheese
• Parmesan Cheese
• Brewer's Yeast
• Canned Fish
• Finned Fish
• Spinach
• 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)

So I am taking these foods out of my diet, I am not exactly sure as to how at the moment but I have been brain storming...started last night and I seem to be doing better today (knock on wood)
For more info about the Driscol Theory and Dr. Diana Driscol :
http://prettyill.com/
Wish me luck! I hope you are feeling well today! God loves you! xoxo-Chelle

Unbenifits of Not Looking "SICK"

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

Meanwhile in Michelle's World, USA

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....

In Better Hands Now.

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.

What I miss the most, Why a Rare Disease Stinks

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.

Yoga, Great for you!

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