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 

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...

Good news I won't be a homeless person anymore but I think all my medical supplies will need their own house too haha!just gave in and ate a tiny kids meal at chick fil a and now am super pukie. Now for the ride back home in holiday traffic. So far a fantastic day for me.  Wish me luck!Chelle 

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

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 

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

Spillage

Poor Wrecker dog was sick  all day today I think he caught my tummy bug from the other day. Poor thing but he is alert and moving around tonight so he seems to be feeling better... He even just drank and ate. Good signs 

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 

Fish Face

Meet Stella my new Betta Fish! 

Stella is Red and she is awaiting her home to be room temperature still... We've been hanging out. Well as much as you can with a fish. Welcome to the family Stella love,-Chelle