Update

Well I am another year older! Separate post to come! I saw the kidney doctor aka nephrologist and we are running tests and collecting records. Then hopefully we can find a better solution and have a better idea of what my kidneys have been and are currently doing. My lichen planus has improved giant leaps and bounds and I am staying on the cellcept medication. My neurologist is pleased that I am still doing physical therapy though it's grueling! I am seeing small tiny improvements but they are barely there it's going to be a long haul. And no it won't cure me but it should help in some way. I am also going to be seeing a new rheumatologist soon! Super busy week! Lots of love-Chelle 

Laughs and victories

Today has been a day of triumph. I went to physical therapy and did the best I've done ever! I even went two times this week!! Then I went and had some more radiation (x ray) for my feeding tube. Something  is up with it. I am having pain and discomfort... Plus it feels like my flushes go straight into my stomach when using my jejunal tube! So we are dealing with that.Yesterday's feeding supplies arrived in a really big box...so of course tonight while I was breaking down boxes, the only option I had was to get in the giant box and laugh! Hope your day was full of sunshine xo, Chelle 

Be Happy Life Cut You Down

Life can be devastatingly rough at times. Trails come and go. Sometimes with the trials comes frustrations or anger. We question, "why me?". (In my experience) we don't want to do the hard things. In fact I would bet if hard times didn't happen we wouldn't choose to go through them on our own. We would be content to stay fine and great always. However Our Loving Heavenly Father (like a loving parent would) sees our divine potential and is going to be the parent and test us, push us to our limits. But every time we get cut down and struggle, we are becoming a stronger better us. We grow in our moments of patience in life.  He sees the whole picture. The bigger picture besides the here and now. I always think to myself, "l may have been dealt a tough hand in this life but I am growing God is building me up." I think hard trials in life are worth it. I'd rather suffer here and be smarter for it because a day or a year on earth is merely seconds in eternity. Don't be afraid to be cut down because you are going to bloom into a beautiful soul one day at a time.-Chelle.    https://m.youtube.com/watch?v=Rr8xvw0cgw0

Ignorance is Bliss in the Medical Field

I had a fantastic wake up call today regarding a new specialist I am trying to see for my Lichen Planus. Yes, my pcp made the mistake of not sending records with my referral. So why did I get scorned? They couldn't simply pick up their phone and said, "hey we need records with referrals" to my doctor who sent the referral. Nope I had to hear all about it as if it were my fault. Then I remind the person on the phone that yes it's their job to call and do these things not the patients. I was very stern and continued asking "so your office does not call other offices and try to fix errors?" all I ever got was an "uh well" ( then brief subject change always back to a lecture of talking down to me (brow beating) me into doing  what they didn't feel like doing that day.  Followed up by more derogatory commands. I am so sick of being bullied by the medical field. For years I have dealt with all them. If I don't do someone else's paid job for them I get the reprocussion of their lazy actions. My life, my body, my whole being suffers. That's not fair and it needs to be fixed. I bet a lot of lives would be saved by using professionalism and common courtesy. Don't talk down to people talk up. Being sick is hard enough wether you understand that or not and work in the medical field find compassion  In your heart I promise your life will be more fulfilling! Wish me luck, Chelle 

My goodness, Angry Skin

I have slept for about two days straight only waking to eat. I have been carbo loading to say the least that prednisone sure messes with the human body! I am eating much less today however and dealing with mure severe repercussions for eating by mouth. Sleeping beauty woke up to realize how dehydration she is so now she is hooked up to her j tube "drinking" some pedialyte. It's currently showing and I feel the most person like that I have felt all day! My lichen planus is so severe that despite my best efforts nothing is working. We have changed to another immune suppressant typically used in kidney transplant  patients to lower the immune system. I am currently on a similar one but it's not doing the job. I'm in a lot of pain and overal feel unwell (hmmm I guess that's the price for a body that is attacking its own cells) I have never had a flare so bad in my life. (Or so painful)  my doctor commented "that I hit the genetic lottery " (sarcasm) and I laughed and agreed but it got me thinking... I did hit the genetic lottery but that's how God made me. I must have a lot of learning to do here in this life or God wouldn't have let me have all these trials to turn to triumphs. Lessons in disguise. I sure do hate this bucket of grief at the end of the day but I know it has its value. Peace and love, Chelle                                       Angry skin:

My Personal Note From God

Tonight I opened my scriptures. As I was opening them, upside down stuck out a little pamphlet thing. It was perfect timing. A tender mercy for me from my loving Heavenly Father. In the midst of a dreary I am too worn out to keep going week... My olive branch appears! It's going to be ok again!  I have been feeling out of sorts not as connected to heaven. Not feeling all the comforts and womderfulness it has to offer me. The words on this little paper read:" be true to the Lord and to his church. Regularly pray in private and read scriptures.  Keep your covenants and listen to the whisperings of the Spirit. The Lord will help you meet your trials and challenges." God wanted me to see this message to soak in and find better direction. He wanted to remind me of his plan. To let  me to know he is aware of my challenges, my struggles. I also had a strong hunch to read d&c 3:6 and it went right along with my note. God is there we just have to be willing to pay attention. Simply by listening to those whisperings of the spirits. Acting on our hunches... Following what we know it right for us.He answered very bluntly to my recent prayers and now it's time for me to act. I can do this the Lord and my Savior Jesus Christ just told me so. I have help and I guarantee if you open up your heart to the love and walk with him you too will have the ability to do the things you need to do in your life. But we have to walk on a straight path. We have to do the right things. Make the right choices. he has endless love for you no matter what happens, he will be there. Love, Chelle

My Face

I have been dealing with Lichen Panus in my face for a couple of months now, I have tried just about everything I can think of. I have used creams, immune suppressants, steroids.  To only get this painful skin to stay persistent on living on my face angrily. I have wept big alligator tears. I have it in other places on my body too but having skin issues on your  face is a whole different thing. It hurts for the sun to hit it. Putting any makeup on hurts, any products of any sort. Simply hurt . I think everyone at some point feels less than others. Less than average. But lately I want to hide my face under a rug. The most frusterating thing is I have no clue how or if it's ever going to fully go away. But the one thing I do know is that beauty comes from thee inside. From our hearts, our souls... That is where the beauty Lies. I am so grateful for the knowledge that my beautiful isn't bought in a bottle or stored in a can. It is not on a price tag on some designer clothing. as no make up can cover up an ugly heart. No shoe will ever complete with a pretty heart. Tomorrow I'm thinking human kindness will be my main piece of my outfit!  There is so SO much more to life than outer beauty! I promise you!  Let your inner beauty turn into your outer beauty.                                             Heart, Chelle                                 "Therefore, care not for the body, neither the life of the body; but care for the soul, & for the life of the soul. 38.That in patience ye may posses your souls and face eternal" d&c 101:37-37... Here is another verse I pondered:d&c 6 verse 7 "seek not for riches but for wisdom and behold the mysteries of God shall be unfolded unto you, and then shall you be made rich, behold, eternal life is rich." 

One's day is Simplicity

Today I made it through a blood draw, physical therapy, Iv magnesium infusion, and to the health food store (for liquid melatonin to flush through my tube) I found a new oil though. I am already in love with Jasmine. I have noticed everytime I go in the Health Food Store I start smelling the testers... (That's how they get you) Then I think about buying up the whole store because maybe something, somewhere, in one of those bottles ... Is a magical cure. Just the right dash of whatever I needed (then I come back to reality) I have come to the conclusion however, I only like the ones that are relaxing. No matter what one I find. Whatever type I would even consider buying and not going, "disgusting!" and hurrying to put it back. (I know they aren't all suppose to smell "good" but if my body revolts at its existence well....) it's going to be to calming or relaxing. This body needs every anti stress remedy it can find.Oh well! We all know dysautonomiacs need our zen on. A very accomplished day! Lots of Love , Chelle

Tubie tips

I have found a new product for my  Gj tube stoma that works really well at creating a barrier. Makin my skin happy. (Pictures below) It's called Monkey Butt Powder. You can find it by baby powder typically.  Then we have aquaphore or petroleum jelly to protect the skin and use as a barrier as well. I always use one or the other depending on stoma conditions. If it's leaky I go towards the monkey butt powder. If it burns and is dry we use petroleum jelly or aquaphore to soothe dry chapped skin. And gj tube stoma pads are a must! They are so cute and comfy and help keep it dry. They also help prevent granulation tissue from growing. I find mine through etsy I really like Milostones and maddies tubies.  ...   I also just Macgyvered the little clear cover off the Christmas tree end of the tubing of my kangaroo Joey bag. I then noticed that in a crunch it fits into my tube (Mickey lo profile button) so I poked a whole in the tip and slipped it into the end of the tube and wah lah! A teensy gravity method but for a little medication it totally worked on my test try!

The Puzzle

My Mom's Friend gave her a puzzle for her recovery. My mom stayed at my aunts today....so when I woke up I though, "I love puzzles, I'll take a wack at it." I have been trying to put this puzzle together all day and I don't even have the outline of it together. It is quiet the puzzle . Professionals only! Maybe there is a warning label somewhere lol! Much love- Chelle 

Current

I am sure you are wondering how my health is holding up... I am holding my own. I have more bad days then good days but I seem to be falling into a pattern. I wish I slept less and did not have to deal with Insonmia. I have migraines regularly now and I take medications and vitamins to help (6enzyme COQ10, riboflavin, and magnesium) it isn't a cure but helpful. I still  am tube fed but eating more by mouth. Still venting, and dealing with nausea and all the gastroparesis stuff always. I still havey port in my chest of fluids. All my diseases are flared up and currently bouncing off each other. I started picking my poison last night (starting more aggressive lichen planus treatment) I take 150mg of imuran a day always (immune suppressant) now we added a steroid prednisone (to further suppress my immune system in hopes this lean lp goes away) it's bothering my digestive track already at day one. I I'll be seeing a nephrologist (kidney doc) next month hopefully to get these crazy kidneys checked out. I also will be going back to a rheumatologist for lichen planus. My endometriosis had found its way back too. It's a party in this body of malfunctions. I still catch myself wondering how my brain got so sick.?MY brain...prayers for Mama's recovery thanks xo, Chelle 

Superman

"If I could break away half of all your pain. I'd take the worst of it and carry you like you carry me. You say that you're alright when tears are in your eyes we're  strong enough for this and I need you it's okay that you need me. So put your armor  on the ground tonight. Cause everyone's got to come down sometimes... You don't have to be superman. You don't have to be superman you don't have to hold the world in your hands you've already shown me that you can. Don't have to be superman." These are the beginning lyrics to the song superman by Rachael Platten. Kinda fits my moms and I relationship she is the rock always but with her being sick lately this is a song she needs to hear for sure. You don't have to be superman xo, Chelle