Friday, May 27, 2016
I had a good day I am so much brighter since not starving all the time! a house to live in...
Thursday, May 26, 2016
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 https://m.youtube.com/watch?v=4M1__0GEiBo
Wednesday, May 25, 2016
Tuesday, May 24, 2016
Tuesday, May 17, 2016
Monday, May 16, 2016
Haha this dog is hilariously sweet.
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
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
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
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
Let me fill you in on things, I basically can only handle so much "sick life" before I explode... So the mixture of 4 separate hospitalizations, in one month. Along with the doctors who totally didn't want me there the last two hospitalizations. Which only resulted in me fighting for regular care and them missing out on an learning experience for their future patients but wait! If that's how they treat their patients I feel sorry for them in advance because they won't get help either due to those specific doctors. But people we have a huge problem on our hands in the medical field! .... It's easier to blame the patients these days. Honestly I get more scolding now as an adult chronically ill patient then I ever did as a child growing up (by my parents) I am constantly getting told I'm crazy though because of the the doctors telling me that over and over again...and me being such a good patient. I did start counseling and I do get psychiatric help... Know what they have to say about my mental state? That I'm normal and they typically are impressed by me... So since I am under care that really closes that door as soon as it's opened by hospitals. I can't count how many times they've tried putting me in psychiatric care in hospital stays because they snap judged me and refused to listen to a word I had to say ... (And yes I am truly sick with papers to prove it all) past that first snap judgement....And the nurses some are amazing but some are so full of their huffy puffy aditudes, that they are so annoyed by me. That they complain to me about how much work I am to them and they know it all...yet I have to tell them how to do everything for me. (Which I don't mind one bit, but the atitude I do mind very much) Then you have lazy nurses (and the doctors that are behind the lazy nurses too) who refused to give me meds because I got to the hospital at 9:30 pm (yeah because not taking regular at home medications makes any sense) I fought this, but yeah they didn't give my regular meds to me. And of course I went into withdrawal twice in that 24 hrs. Thanks to them ...You know deciding to just be LAZY! Oh and not feeding a patient due to them having a feeding tube is highly unacceptable! How about you get sick and I will withhold your food for no reason until I get fed next time? Lets see how you like it! What is this Shady Pines? No it's a hospital where people come to get help. You know my team of hospital doctors really told me to come home and quit. That I needed to stop seeing specialists. They were all just pill pushers and that I needed to stop all medications because I take too many that's rediculous...Notice a pattern here? Me. Me. Me. Me. Me. When are doctors going to start taking accountability for their actions? Since when is blaming the patient ok? I don't walk into those doctors offices nor any hospital going "woe is me" "it's all your fault I have POTS. It's all your fault I have Gastroparesis. Ect. It's all your fault I'm sick!" And I would never ever do that to any doctor!!! It's not their fault. It's not my fault. It's life. One of the uglier parts. So doctors if my complex disease history bugs, offends you along with my wide knowledge about it. I think you may be getting mixed signals I'm not looking for a cure, simply care. Compassion from one human being to another. Because I am not just a patient. I am a person too. Doctors please pay attention are you taking accountability for your own actions? And the things you say or do to your patients? If so then high five but if you are one of the probably millions of doctors blaming your patients for them being in your office, or hospital, blaming other doctors who they've seen for years and specialize in that area of expertise and care. That have a much better understanding of the case simply due to time and their specialty...Don't rag on those specialists. Stop blaming every body else!! Take a stand to be the doctor you took the oath to be. I get you can NOT fix everything. You are human too and that's perfectly exceptable...But I never want to read another doctor's article about how it's a chronic patients problem that you feel less than yourself aka your ego is bruised by a chronically ill patient. DO NOT blame me for that!!!!! I bet you that patient is not looking for a cure, just compassion, and to be treated equally. I liked the reminder that doctors are human too I read that a lot. I totally support that line and I am constantly reminding myself that very thing too. But we patients are humans too ya know? So quit blaming us. I don't blame you do I? Have I ever walked in and told a doctor, "it's all Your fault that I have these incurable diseases." " You did this to me." "Or I did not take my medication that's your fault doc." No because at least for me that would never happen in a in a million years! So maybe you have had a hard case... Maybe it's not so fun you don't get to be the super hero doctor with that healing cape on. However putting the blame on me the patient is not even a little bit acceptable. Take your own responsibility nurses included too. I am sick of me and my community of chronically ill being sent to psych wards, ignored, sent home to take a stop on all treatments (result of making us sicker), or even death...you say this to get us out of your hair. But do you realize what that does to a person? okay yes your getting the blame for that but shouldn't your actions have consequences because they dang sure do for me? And the others in this same situation! don't allow us to fall through the cracks because we are human too and we need your help and want it. So you take your own responsibility and I will take mine and let's hope the patient care grows to be better because now it's kinda in the dirt. (I want to make clear this is not the case for all nurses,doctors, hospitals, and:or any other medical professional there are many talented hard working caregivers In This world and they deserve the moon for their efforts.) but sadly their is a divide in our health care between my long post and those good amazing doctors. And the patients are suffering. I'm standing up for the chronically ill complex patients who bruise egos by existence and get snap judgements made and no further help just because I'm super sick ... Don't you think I'd stay at home if I'm so used to being sick instead of blindly walking into a fight fest for help??? No I'd stay home and care for myself and save the energy gladly. -Chelle
Saturday, May 7, 2016
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...
Wednesday, May 4, 2016
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 is truly full of beauty inside and out ...