I believe trials are the biggest blessings in life! being sick has been my biggest trial yet. Being a young LDS woman I view my life as a beautiful gift. even when it doesn't seem that way my father in heaven helps me to have strength to endure all hardships of being ill. I hope to help others by sharing my day to day experiences. I'm just a small girl ready to make a difference. During the good times & while enduring the bad times we can live, encourage, & most importantly LOVE!
Tuesday, May 31, 2016
Must forge on
Now to forge on! I'm better I think. but super weak and tired. My feeds ran at 25ml for a very short time last night. Then I had to put them down to 20ml all night. So I'm not getting much nutrition . I am hopeful I can get this lined back out by the end of this week because I have a long week of doctors and tests next week in the valley. Today I am pushing myself to go get my labs and make It through an appointment. I am hopeful that I can get through to my pcp but the phone is not working. Great! I want to say oh it will be okay and today is okay but the truth is I'm just too tired to feel that way, call me negative Nan because I really don't have the energy to care. Hopefully tommorow I will lol -Chelle
Friday, May 27, 2016
Neuro visit update
I had a good day I am so much brighter since not starving all the time! Well I saw my neuro today and overall I can't complain. I had a good appointment and we are starting topamax for migraines (since they have worsened) if that does not work I will be getting Botox injections and/or nerve blocks in my neck. He felt my right eye is flickering and spasming due to the head pain. He checked it out extremely well and had me worried for a second because my right eye is having the issue and he looked at my left eye forever so I was like uh oh no hey that's the good eye. There can't be something wrong that's my good one Hahahah So good news really he said to continue onl to kidney specialist and urologist and to keep doing what I am doing. Costco is close so we ran to get a few necessities and I found myself a house to live in...
Thursday, May 26, 2016
Won't let go
Tonight has been anxiety filled and I honestly don't know why. Besides my trip to the neurologist tomorrow. Traveling is so hard on a POTSie body. Poor circulation in the car, change in altitudes, motion sickness... After my long day of packing a ton of stuff for my day trip (us chronics have a lot of luggage) but tedious work how many doses of meds, sodium, it never ends. Then I'm constantly making medication lists that are long. Idk just a lot of work being sick. But my head was spinning with fears. But my Heavenly Father sends me messages (for sure through song and many other ways) but tonight I was getting ready for bed brushing teeth,washing face, saying a few prayers. But the whole time this song popped into my head... I didn't know the name of it or anything. I just heard "It hurts my heart to see you cry I know when it's dark this part of life oh it finds us all and we're too small to stop the rain. Oh but when it rains, I will stand by you, I will help you through, when you've done all you can do, and you can't cope. I will dry your eyes I will fight your fight, I will hold you tight, and I won't let you fall. Don't be afraid to fall I'm right here to catch you I won't let you down." End song. Wow isn't that such a clear loving message from my Heavenly Father! I am so touched. He sent me an olive branch tonight my path may never be easy but knowing how much love I have from God and Heavenly Father and mine Angels here and in heaven. Jars moments in life open windows for our souls to grow closer to our Heavenly Father and our eternal futures. love you -Chelle I looked up this song and it's https://m.youtube.com/watch?v=4M1__0GEiBo
Wednesday, May 25, 2016
Down day
Well I knew it was just a matter of time...Today is a rough one I did get my mile in still but I have been up since six am with a tummy ache then that got better and now I'm so totally worn and tired. I assume the weather and my allergies have something to do with this. I also felt crummy last night due to "medicine sick" ( where you take so much medicine you get sick and poisoned feeling from all those side effects) there seems to be a tummy bug in this house and oddly the dog started it, then I had it, now looks like mom may have it. Uh oh! My goal today is to rest, take a shower, and then access my port (no needle in my chest what what?) so have have to reaccess the port. Hoping if I rest today my body will get happy and feel better tommorow and Friday for my neurology appointment. (Trying to save my spoons) Wish me luck!! Lots of love and hearts-Chelle
Tuesday, May 24, 2016
Where did you go?!
Where have I been at? I know I have not posted in a while. Here is why... My nights (when I usually write) have been full of horrible chronic migraines. I usually have them for a week every single night in a months time. This month has been two weeks... It's been such a struggle and I don't have the proper medications to control them. I'm not getting good sleep either because I am up with painsomnia. But oddly (and this part I am so very grateful for and feel so very blessed) I am having good days! So my days are pretty good overal. So I have been enjoying myself and getting things taken care of during my good day strike. I have another new symptom that has been around for about a week now. My eye is spasming it is the right eye and it's not just a little spasm it's like the muscle and it's on the eye lid but deeper and then higher up to the eyebrow. I assume it's Dysautonomia. But will be bringing this up at my neurology appointment this Friday. The Iv hydration continues to help and I am after 6 long months of feeling so low, humiliated, and hurting I can now excersice like a normal person I hit a mile a day. Which is like a super big milestone. Have not seen any improvements with my POTS necessarily but my stamina is so much better. And I am of course stronger! I will take it! Because we all know in an hour, a minute, or by tommorow I could be in bad shape. This probably looks like wow I am so much better and healthier... but I still can not function at a normal level. I am still pretty darn ill. With this particular syndrome I can workout but I am still sick. Boo! I started my new medication to help with my starvation (that comes from being tube fed into the small intestine. My stomach remains empty. Of course on purpose because otherwise the food sits in there for hours or days past what it should and I throw up. So by putting formula into the small intestine we are bypassing the stomach and putting right to the source of absorption. And that way no vomiting food. Which keeps me alive. But my stomach gets confused because it's empty so it signals my brain hey I need food you aren't eating... To you are starving! (Even though I get my nutrition through my tube and my intestine) my brain thinks hey we are starving here people. And that leaves me with that feeling and I give into it and 'eat' leading to making me throw up constantly and it's bad news) so this new med I started today and I am not hungry and I woke up this morning thinking I want a cookie and I took my meds and an hour later I'm not hungry. I feel like I can relax for the first time in months! Not fixated on food I can not digest. It really is tortuous. We hope if this medicine works I will have a break and be able to go off of the medicine in some time after my body gets used to not eating again. Time will tell-Chelle I made a new YouTube video on how us Tubies get a drink:https://www.youtube.com/watch?v=KdZcDV_8nUc
Tuesday, May 17, 2016
Spillage
I had a good run today (not physically) but unlucky for me it's my migraine cluster time of the month. When I get my nightly migraines. This is my Iv it's cold so it felt good on my head but I'm sure it will feel better in my system. It's rediculous that no pharmacy up here can get me the proper form of my medication sumitriptain so I can have relief we are still working on getting the nasal spray due to the shot being too fast and my heart having side effects that my neurologist wasn't comfortable with. Riding the tide... We keep trying and it's not the pharmacies in town it's the supplier so yeah every few weeks I get a date of when it will be in and that date rolls around and then it gets pushed another few weeks... I've been working on it since the beginning of February. Meanwhile I'm just dealing with it. I luckily can take compazine benedryl mixture but it doesn't work as well. They said they were going to give me samples and figure something else out at my next appointment. For the starving we are doing use what we'll I can't remember what the name exactly it is but it helps binge eating so suppresses the appetite (I don't eat through the tummy it is bypasses and goes straight to the intestines. So my stomach tells me I am hungry and empty and my brain signals the same. Which has led to me breaking down time and time again and basically eating until I throw up and it's so complex and frusterating. I do not need to eat by mouth in fact at this point it's better I do not because every time I vomit or wretch I risk throwing up my feeding tube. And making me sicker my body doesn't process food my stomach empties many many hours even s day later than it should be. But I literally feel starving though I get my nutritional needs met through my tubes. So we are hoping for relief because quite frankly I am worn out. Being sick has been a bigger tole on me lately. I think the last two hospital stays with the frusterating criticism with those jerk doctors in the valley was just the icing on the cake and the poor treatment I received mentally and physically. They were just mean and blaming me for everything. I understand answers can't be conjured up out of thin air but respect is and compassion as a human being is a whole different level. We wouldn't try making a paralyzed person walk would we?? so why did they try not feeding my paralyzed GI system? Because I have a tube? Was I supposed to eat food? That's the same as taking a wheelchair away from a paralyzed person and telling them just to walk. Any ways rant over. I am strong and I will continue my fight one day at a time. I will choose to count my many blessing and focus on what I am capable of doing. I think it's time to listen to, 'Trouble no more ' by mindy Gledhill "no more bandaids on my heart ache, no more smoke when I burn the pancakes, no more drowning in my sorrows, with your chin held up there's always better luck tomorrow "Until next time -Chelle
Monday, May 16, 2016
My Big Hearted Fluffball
My big hearted fluff ball is very intune about things not being right. (Especially when I am sick) or anyone for that matter. And he apparently can tell when the Volkswagen is feeling a little off as well. Haha he is obsessed with my car today because it's on the jack and missing a tire while we fix it. Haha this dog is hilariously sweet.
Feeling hyper and full of blessings on a Monday
I'm I m feeling better people! well, as long as it's. Not night time! I actually have gotten dressed and put make up on wow! And then I actually left the house haha.
I was super excited and I went to get in Herbie (my Volkswagen Beetle) and he had a flat tire. And I keep thinking of the gieco commercial with the silly lizard. I am hoping to get it fixed today my grandpa Doug took it to be looked at and hopefully patched. So thankful for him taking care of me (and my dad! my dad did a lot of tired taking off of and inspecting last night and airing it up. I am so very blessed with grandpas, my Grandad Owens passed away in 2008 but he is for sure and angel in heaven and if your a regular you have seen my posts about how that veil to heaven is oh so thin. Our angels are there with us especially in times of needs. My Grandad definitely is with me when I need my angel! Such a special blessing in life! But here is more exciting news!
I turned this purse into a.....?
Feeding bag/purse! Go me!!! I think I figured out what I need to simply do to turn my bags into feeding bags as well! Super big smile inserted, right here! I tried ordering a customized one on etsy but the seller got me all set up and excited and we made a plan... Then I asked for a rough estimation of the costs and she never spoke to me again. Even after several attempts throughout a months time of hearing nothing back. So weird. Kinda made me mad I won't lie. But TODAY her loss and my win! Big win!!! Happy Monday!! Lots of love-Chelle



Wednesday, May 11, 2016
Agony, in a chunk of time
I am up with horrible painsomnia!!! Let me explain how my typical ickyness feels.. I hate it when every fiber in my body hurts so deeply and consumes my whole body. The pain races through your thoughts but all you can do is lay in a curled up ball. It's your only defense. You try to distract your mind from the pain, trying everything. It's like calming a fussy baby. Then comes another wave of nausea and pain. You gi tract feels as if it's been flipped, tangled, and twisted upside down. The agony unbearable. Bad boom ba boom, you're heart beats strong and you can hear it in your ears each beat rattles your brain. Now your head hurts too. The noises seem to be a million times louder then normal, with each pitch sending a wave of electric pain. You take shallow breaths. Your best attempt to not give into the chronic. So you take big cleansing breaths and let the toxins float away. You think getting up will help but the slightest tilt of the body knocks you over. Your head is spinning. Now your slurring words and feeling completely out of control. Your brain is not cooperating . I can't think. What do I need to do. Then come the heaves The agony is still there waiting, pleading, praying for it to past. That's POTS and pre syncope -Chelle
Pelvic pain, what to do?
My pelvic pain and lower abdominal pain have been increasing and my pelvic floor muscles aren't to happy with me lately. So besides my Iv fluid and my j feeds I am so grateful I can use my tens unit. (Photo above) the electrodes mix up the pain signals and it's safe, no side effects, and it really works. I've seen them or I should say similar products come out since I got this tens unit. But it was a whole process with a doctor's script and insurance. This is the exact Same in if use at physical therapy so we knew it would work for me. So I highly suggest them they are well worth it. Especially for people who have chronic pelvic pain, or lower back pain, or lower abdomen. I mean took Tylenol and used baclofen suppositories but they just didn't work on this particular day. Pelvic floor spams are tricky you have to just ride the tide and do what you can and some days that includes just letting them be crazy and wild. But that tens unit knocked the pain out. I recovered from a trauma case so I will always have issues and I can't complain. Oh and I did graduate physical therapy about a year and a half ago. I had the best therapist ever! Dynamic rehab ladies that's the place to be for p.t. I'm a huge physical therapy fan it took me 21/2-3. Years and some times I felt like it would never end so stick to it! My doctor told me after a few devastating months of p.t. That it would take years but to look back every 3 months and if I saw progress (which she ensured I would) I could quit or carry on. And of course every few months I'd look back and see my slow but definite progress. Pelvic floor issues are tough but I believe there is a lot more to be learned about it all and more women and men will be talking raising awareness which in turns raises help for a suffering person-Chelle
Tuesday, May 10, 2016
Catching Rays and more
Caught some rays today. The weather is beautiful! Lots of good days. I had a much needed peaceful day. No medical mishaps. No disruptions. Just a peaceful decent feeling sunshine day. Mr. Wrecker enjoyed being put on the sun so much he hung out in the shade hahadefinitely haircut time. I felt the spirit strong in my heart. I guess a little nature can remind a person how wonderful life can be. I definitely had heaven sitting besides me on the porch swing. My angels are with me as well as a loving Heavenly Father. I have what I need -Chelle P.S. Every single person I've talked with in the past two weeks have commented on my pale skin. And I'm totally not offended by it! They even ask me if I am ok haha so maybe some of you are worried too? I am simply a natural redhead who has heat intolerance and dehydrates easily, plus I am tube fed and I can't remember why but it makes us have a harder time to pick up color I wanna say because of iron? Hmmm not sure. But yes I'm ok for me :) no worries
Doctors take responsibility please
Healthy me... (Can you see the difference). Yes I can put a smile one my face a talk to my doctors when they see me once a day in the hospital. Because sadly I have to. You get so much info from me during those few short minutes...why judge me for it? I'm helping you aren't I? I mean you kept asking questions? All I did was answer?
Saturday, May 7, 2016
My rest of the week
So we left to go to the valley Wednesday night and it took forever due to all the construction. This was at 9:30pm on a WEDNESDAY night!! Lots of people and even more construction go through Payson it's really rough and not easy on the vehicle...
I saw my kidney doctor Thursday and she basically said what we figured was going on... Because of my POTS my kidneys are over producing urine and kicking out my electrolytes with it. So yeah I'm basically always dehydrated and I have been for years. The two liters of Iv fluids I get along with 500mg magnesium has been helping but at the same time giving my kidneys more ammo creating my to just kick out more. But it is necessary for me to have that large amount of fluids to not be super dehydrated anyways we are trying a medicine fluocortisone, To try to break the cycle of my kidneys over working or malfunctioning. Then we went to our old stomping grounds Park Place Deli it's kinda to the side and behind st Joseph's hospital in pheonix but it's awesome!!! I have lots of memories there, we lived at that place in between appointments and therapy back in the good ole days when my doctors thought they could and would get me back on my feet and in their places they did but I have an ugly monster called Dysautonomia on my back and of course they didn't know. I didn't know. I knew I was super sick. The urologist appointment was short and sweet but I liked him he had been over all my records and hospitalizations he knew all my top notch fancy pants specialists and he is not saying a word until after testing because he doesn't want me to worry about things that we don't know about. Little does he know I am a doctor myself and I know way more then he probably thinks haha. So I am a mess,but I have more new specialists who so far have been good to me and want to help me despite all my illnesses. I'm m have quite the crew working on me lets hope I can get a better quality of life somehow. I am doing better then last week pains in control and lessened but I just started with the lower rib pain after starting my iv. And I am running a fever still. P.S Happy Mother's Day to all of those Moms out there and huge hugs to those missing their moms this year xo😘
Wednesday, May 4, 2016
Preparation
Today I repack everything that I just unpacked. Irony lol. I not only have to pack clothing and the normal I have to pack all my feeding supplies and pump then all my port and Iv supplies and pumps ... And of course there is the dilemma of taking ivs that have to be refrigerated. Phew! I have been at it off and on resting in between rests. I about got it all. Now taking a min to rest some more!! I even took a shower and shaved wow! A POTSies biggest struggle is a shower they mess with our blood volume and our hearts rapidly beat while standing and lifting our arms above our heads make it even worse but that's just life with POTS as long as we don't get extremely ill or pass out we win! I also had to access my port. I am so busy and worn out! I'm still sick but I am improving with the pain I have had fevers still off and on... Wrecker is totally mad at me he went in the house and he is ignoring me. But when I asked him if he was mad I was leaving again he grumpy me from across the room... Luckily my kind neighbors are going to let him come play while I'm gone! My neighbors are seriously the best they are full of compassion and always are willing to help out with wrecker idk what I'd do without them! thanks guys you all rock seriously!! Going to see nephrologist (kidney doc), urologist, and Dr. Brooks. Wish me luck-Chelle
Monday, May 2, 2016
My mom
My mom is truly full of beauty inside and out ...
She is truly the best mom she does everything and anything every time I need help she fights the ugly fight right by my side she would do anything for me and my appreciation is never ending. I could never thank her enough for all she does. She is truly my rock. The one person I would be so lost without. She holds my hand when I cry and am afraid. She picks me up when I fall. And when I loose my fight she lends me hers and isn't afraid to tell me when I need correction. She is the ultimate cheerleader. She works her butt off to provide for her family then comes home and works some more putting dinners together cleaning the house, doing the laundry paying the bills she is super Mom. She had to run out of work last week to come home pack us both up and ALL my supplies. (I too weak) she selfishly got in that car and drove all evening to pheonix then dead tired stays up with me and nurses to make sure I get the best care when they weren't willing. She sits and deals with fatigue sleeplessness in those noisy hospital rooms and uncomfortable chairs waking up laying over a table in a tiny hospital room. She hurts from sleeping in the most uncomfortable positions but she never leaves. She is so amazing she pulls me up me when I'm upset getting kicked out of the hospital to the next place and fights with me some more putting her own hurt , afflictions, and upset aside and putting me first. She is scared too and upset watching her daughter fall apart physically it hurts her every bit as much when I'm not okay. She feels just as clueless as me but she keeps going. There is nobody on this earth so unselfish as my mom. She is such an inspiration to me and I could not love her more. Heaven really did give me an angel when he made her my mom. Thanks mom you are truly the best mom in the world as well as friend but you have always thbeen a fried to me but always were sure to use the mom card discipline was never dismayed. You taught us how to be nice, loving, wonderful individuals but you also taught us respect and manners, right and wrong, and life's not fair. You taught us to be hard workers and you taught me to be a fighter...but however if needed you will kick our butts! Thank you mom seriously for everything. I could never count or add up the millions of times you have been there for me. Even now as a grown woman you are there no matter what. Thanks for all the never ending love and care I could never thank you enough for all you give. I really love you mom ..... My mom ran and got me this little inspire on coin when she was kicked out of my room for x rays the other side says keep fighting. I will cherish this forever though. She walked in the room moments after a jerk doctor and handed me that. I was grumpy and I felt like I was going to fall apart, bursting at the seams. But my momma loves me and she told me to keep fighting! And I knew I could handle the rest of the time there while being judged and mistreated I knew I could get through the hard times!
Shame on you
I'm sick and tired of being sick and tired. I'm sick of being treated like dirt by hospitals. By doctors who view my as an inconvenience. A waste of time. My life has value. My pain has value. I have been told this week to stop going to doctors, to stop taking all my medication. That I have chosen this life as a Tubie and basically I chose these diseases by going to too many doctors. Let's ignore the whole big fact that all my diagnosises have full proof behind them! Non of my diagnosises were a guess. I have a test with proof. My medicine can be a lot but I also take a lot less then I could be. I also take a lot of vitamins and supplements to help my diseases. Yes I'm chronically ill no doctor can cure me of these diseases. I have full understanding of this. I have accepted this. I went to those hospitals for help with new symptoms that I haven't had before (not my diseases) though the first hospital slapped me with fibromyalgia (because that causes fevers and Kidney / flank pain along with urinary pain when going pee. And uncontrollably wretching for hours until my throat bleeds and has sores) I'm tired. I am mad they put me into withdrawal due to not giving me my regular at home medications. Their reasoning was because I came in at 9:30pm. Shame on you for not feeding me simply because I am tube fed and it was am inconvenience. Funny I do it daily with no fuss. They made me worse they did not help me nor did they even try. Don't you know I need to just go on an anti inflammatory diet BECAUSE I CAN EVEN EAT... I wasn't looking for a cure I was looking for help and respect for my new symptoms. My friends and I that are so chronically sick we have been proven that our deaths come from not getting proper care when we know we are not okay. The medical system is broken just because we live rough Lifes of chronically ill doesn't mean demeaning us as a person is ever okay. Sending us home to die is never okay. And by that I mean they tell us to quit, go home, and shut up. I might have cried but believe me I will never stop fighting because I know of my importance. I am aware of what I deserve. Now this is not all doctors their are many many great doctors but this is to my doctors this past week in the hospital shame on you. Shame on you for hurting me. Shame on you for judging me before you met me. Shame on you for calling me crazy. Shame on you for telling me to go home and quit. Don't tell me to go kill myself . Oh but you all came running to see my case treated me like a monkey at a circus. Just so you could now say you've seen suck a case. But you didn't because you limited and allowed yourself an education for free of a life time. But you didn't want to put in the work to help me. You just wanted to use me and send me home. I hope no other patients get told these thing but sadly we do and I know because I have a great group of friend and support with the same diseases being treated in the same awful unbelievable ways. I am chronically ill I live in pain and sick, when I come to you for help maybe you should realize just how strong I am ... And if I came to see you there must be something wrong.treat me like a human being I deserve that at the very least-Chelle
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