Monday, August 14, 2017
I just wanted to share some eating with Gastroparesis tips. I just really stumbled upon and I think are super helpful for me today. Maybe someone else can use them 😊 (all out of the book "Living (Well!) with Gastroparesis" by, Crystal Zarborowski Salterlli CHC) I love her books! She is a nutritionist who has Gastroparesis herself. Seriously she taught me to eat again with GP.... Now I have noticed a huge decrease in function lately. I am tired all the time, Sleeping 12 plus hours per day, I'm peeing more, I know I am incredibly moody, I keep having spells of feeling in a funky spaced out world, and it's like my brain isn't even working. So of course my first thought, "Why & when did I feel this way last?" When I was struggling with anemia back in January or so. (When I was weening off formula). Well I have been studying up on my GP nutrition and diet. I have a lot of things I notice now that I need to work on. I'm doing well but as most with GP it's a constant battle to get a balanced diet. I'm not so sure I'm anemic but I think I am not getting my good fatty omegas in. Aka your fatty acids. We need them! Signs of deficiency according to my handy dandy GP book is " excessive thirst, frequent urination, dry hair, & skin." -pg 85. (I have recently developed every single one of these symptoms. I mean I've been whinning over being so thirsty. I'm so glad I popped this book out today.) and I don't eat any of the foods that have the Omegas in them. (So I've got to fix this). I am always hungry even when I am full. Even sickly full! (Well I knew this one but forgot). You absorb your nutrition in the small intestine. So if you have GP and you are Starving even when eating or after eating.... Have a little bit of fruit juice! It will absorb faster and seep down in to give your blood sugar a kick up and make your body quit signaling that it is starving. (While the other food is taking its own sweet time as we know sitting in that tummy not absorbing at a normal pace. Which is why the body tells you to eat is the food isn't going down and being absorbed. This leaves me hungry and full at the same time. Stinking belly!) I definitely am dipping low blood sugar despite eating regularly. Funny before I got this book out last week, I was up all night eating junky foods. I was just hungry as a hippo. And I ate crap food because it was late and I didn't care to be honest. Quick and easy. We know the double edge sword with GP... junk foods are the easiest to digest but are empty calories. They don't offer nutrition. (I also thought, "my nutrition must be great I gained a few pounds the past two weeks." But that's probably all empty junky food calories. So weight gain isn't a good nutritional measure in this case... Also I said it in the past. I will say it again. Weight does not measure your nutrition!) I started having juice since I was incredibly thristy and I quit eating late at night. So it goes to show how tricky eating and living with GP really can be. It's a mind game. I thought I was so stressed but now that I am putting the puzzle together... I was and am actually struggling to get a good rounded diet with a paralyzed stomach and it's effecting my body. Some thing all Gastroparesis sufferers live with. Even when we can eat by mouth there are complications. (See we are all #starvingforacure it's not just a catch phrase.) So I am not calorie counting or freaking out but I will be monitoring my daily intake of omegas, proteins, & I realized my formula had vitamin K and my Orgain doesn't have vitamin K (only big nutritional difference between them.) I also do not eat greens because use I can not break them down. I also started last week setting alarms because as I tend to get side tracked or busy. I forget to eat. That could be from being tube fed for so long... Just something I never had to think of I hooked up to feeds once a day and that was I. So even still I am constantly learning to stop and eat. And I think the alarms will help my body get a proper schedule. So I will just work on these goals and see. I know living with Gastroparesis is work and confusing. I know how stressful eating with GP is! But my advice is to listen to your body. It will tell you when something is wrong. (Mine has really been telling me that something is off.) Then think it through. Then simply do the best you can and seek medical help If needed. That's what they are for! (That's where I was headed before my studies.) I do highly suggest this book! It's full of information and explains not just GP itself... but how to eat, what is good trial foods, recipes, & it explains the nutritional end. Which seriously no one had ever explained these things to me like this book. And I had been living with GP for years and thought I knew all there was to know. Go check her out!http://livingwithgastroparesis.com/ It's been so helpful to me. And I loved being able to pull it out to check on a few things that I was suspicious of! -Chelle
Thursday, July 27, 2017
https://youtu.be/sM27ewIDtnI I have literally almost lost my own life to this disease. And I have lost too many friends. Their docs didn't get them a tube in time. Their bodies quit absorbing nutrients. They got severely dehydrated and passed in their sleep. Unexpectedly. All too soon and too young. (And continue to do so regularly.) this is fatal. And I'm sick of the misconceptions! So, I'm breaking them and speaking out. August is Gastroparesis Awareness Month. I'm sure I'll be sharing info and awareness so keep your eyes out! Just because I am handling my condition well today doesn't mean I've stoped fighting!
Wednesday, July 26, 2017
If anything this year I have learned that I am in fact tough. I have come so far and I am so blessed! And I am continuing to seek new treatment options. We think my Sjögren's Syndrome is a new culprit. (We let it get the upper hand when we stopped immuno suppressant therapy last year. Now it's showing back up it seems.) I'm ready to fight some more. I'll keep you posted.
Wednesday, July 19, 2017
Tonight at church during game night that I am not too talented at 😉 anyone who knows me.... will know, I danced but don't expect me to do other sports for I lack the skill set needed. Between that and my health I chose to sit it out. Meanwhile someone needed instructions to the restroom. I told them "I will show you." So we go and I showed them. (I wasn't going to be a bathroom stalker. So of course, I waited down the hallway.) Meanwhile I found myself in the exact spot standing in front of a beautiful picture of Christ. It was the picture of Christ Healing the Woman that touched him. Who had been sick for 12 years. She was a younge adult female. Like me. I teared up a bit knowing that My Heavenly Father was indeed speaking to me. It was no coincidence. I do have faith and I know I can't be healed all at once. He has told me that's not part of my plan. It will take time and effort. It's bound to be a bit bumpy. But I know that message so clearly. And I know God is healing me from the inside out. I know Jesus Christ is My Savior and Redmeemer. I know He hears me. He always answers in those still, yet subtle ways. He knows my heart. He knows my pains and sorrows. He knows my losses. He knows my gains. He knows me better then me! He is showing me that I am waking down My right path. Looking at that picture I felt me walking down a trail alone. Then him walking up to me and grabbing me around the shoulders. Then leading me side by side we both will walk together down the path. And We are. He is My Savior and I love him -Chelle https://www.lds.org/media-library/video/2011-10-031-jesus-heals-a-woman-of-faith?lang=eng
Monday, July 17, 2017
Monday, July 10, 2017
Thursday, July 6, 2017
Thursday, June 29, 2017
I also took a simple luxury and bought sunglasses and some makeup. I made myself use up some of my 'ten year supply' of makeup and I haven't bought any makeup minus, foundation and mascara since last fall! (Yes I am proud of myself... That's hard to do for a Makeup Geek.) I am a proud makeup hoarder (as You probably already knew.) However, it was time to clean out the drawers of makeup and use some of it. (Mostly so I could make room for more right 😉😉) Maybe I'll find a new look since I've been on the same three smokey eyes for a year now. A little inspiration. I mean I used to have a new look every week... Haha. I have reserved my makeup skills due to tremors in my hands and weaknesses. What was therapeutic became frusterating. In what felt like overnight. Unsteady hands do make makeup applying harder. But as I have with everything else in life... I won't let disease take that away from Me... I won't let some slight wobbles of eyeliner get in the way of life! (Isn't that what q-tips And "fixing it"is for 😉) I simply just enjoyed My day today and I felt like Chelle again 🙌 (not the old Me... As in before sick... I don't need to be her. Just the regular Me I have become.) Today however, not some incredibly tired aching zombie person I've been for a week. I also woke up at 9am this morning!! That's a victory to my broken sleep schedule! Overall, I had a great day. I wore sunglasses in my house 😂 I loved on My doggie... I was a goofball. I was happy.
Wednesday, June 28, 2017
I'm simply physically tired. The heat is just too exhausting. I mean SO tired I let myself take a nap yeaterday. (You all know I don't let myself nap due to insomnia.) I have seen my pelvis specialist and Endometriosis is finally moving in the right direction. (Took a u-turn by accident post surgery last year.) after altering treatments we are in high hopes we finally are moving forwards though I have a long ways to go. My doctor is amazing and is working hard with Me. Endometriosis is no reason to live in pain. And that's the type of Doctor you should have! Also She doesn't think o have a hernia. My belly is now weakened from too much cutting and that's my pain and weird belly button soreness. (I've had 4 surgeries through that area.) I also had my nerve conduction study on My hand/arm. So, we will see what that brings. If no info we will keep searching. There are reasons. (It could be elhers danlos syndrome. With inflammation I am feeling, I wonder if it's autoimmunity striking up.) I have had a ton of inflammation and pain all over so again, I know something is going on and I just need rheumatology to figure it out. I do have autoimmunity. I have multiple autoimmune diseases... The biggest hang up is... I have been diagnosed with Sjogren's and undiagnosed. My last Rheumatologist left it at he couldn't say "no I don't have it" nor "yes I do"... Come back in a year. So I am going to ask my kidney doctor to help me as she sent me before to an amazing one who was known for dealing with complexity bit the move happened. I need to know definetly because they have just released to all POTS patients that we should if suspiciously are undetermined diagnosis of Sjögren's syndrome we must determine if I have Sjögren's syndrome (I can start IVIG treatments and it should be successful in treating sjogrens and my Dysautonomia.) they also really are starting to find information pointing that Dysautonomia is an autoimmune disease. (Which for me makes sense.) I also am still deconditioned. So I will be in the nearer future picking that apart and entering even more complex physical therapy (I don't think it ever ends, physical therapy.) I am sure this post seems like a downer in comparison to the others. I am still doing so well. I am SO very blessed. I mean I am eating folks! Those mountains I have climbed this year... They were still tackled. I did go to the top... but now it's time to keep moving forwards and keep climbing the rest of those mountains left. Because I do still have a ton of conditions that are contradicting each other. I am still medically fragile and I am physically weak even with my great progresses. So we will start tweaking care again. I just have to get through July and August (mostly July with the heat intolerance.) Due to heat intolerance physical therapy out of town has been paused. (Since it's so severely hot where I attend my treatments.) We all feel it's necessary to avoid the heat. I have to take care of my whole body as a packaged deal. I can not regulate my temperature so heat is horrific to my condition overall. So we will break and restart probably very hard in the fall. That's my update. From the few days of medical evals. After all, "mighty change is mighty hard"- Neal A. Maxwell. Though I am so fatigued and hurting. After a trip home I still got my cardio in because I know how important it is for my body.
Tuesday, June 20, 2017
G tube life here we go! Would You call this The secret life of the American Tubie? Gastroparesis Warrior mode on ✔️ Love -Chelle
Thursday, June 15, 2017
Today I feel like a whole new person! I feel full of life. Today was freeing after being so trapped in the house. I'm happy! I'm blessed!
This photo popped up on my memories today... One year ago my feeding tube broke and fell out. It was a crazy time. (The actual story is pretty funny you'll have to go look back to last year and read it😉) I had spent weeks with my GI explaining something was wrong. I couldn't feed without becoming very ill. I was tasting all my medications that I shouldn't have been but it was going into my paralyzed stomach. I ended up having a hole in My feeding tube so it really was feeding into my stomach. Which was avoiding the whole point of my Jejunal feeding tube. My GI felt horrible about it, He had been very busy and didn't stop and listen to my issues. They all pointed to the issue at hand. Due to that I was not able to eat all that time. I then had to have a full surgery to recut my stoma and replace my feeding tube. I ended up getting refeeding syndrome. Meaning I had to start my feeding rate from scratch all over again. I could only feed maybe 10ml per hour at a time. I was malnourished. It took Me down the whole summer. I battled hard to have my nutrition. The second I regained enough to be in the safe zone, I caught some flu like virus. (In the middle of summer) my neurologist panicked with concern. I will never forget him calling me. I then got over that with a week to spare before going into surgery. (I went back and forth on actually going through with the surgery.) but I prayed and I was told "to prepare." I mean I had been praying for what, 9 years? For healing and one night I was told to "prepare. I would not be healed fully but I would function again." And just like that I slowly regained the ability to eat and drink. I was able to better control my diseases. It was definite divine intervention. God was in fact healing me. The world threw me nothing but ways to become sicker and my body was in fact healing. My mysterious disease was back tracking. My crew of doctors were all stumped but of course we were happy. We all held hope but were nervous to see if this was truly going to last. I had faith. I knew what I had been told. This feeding tube cap (literally garbage in my pocket)...Was a sign of where I have been and where I am going. It was not a coincidence and I know Heavenly Father has a plan for Me. I am a survivor. I almost starved to death but I did not. That cap didn't make it through the day and the laundry to be found a year later in my pocket on just the right day for no reason. There was a definite reason. Divine intervention. Don't throw your garbage away! Just Kidding! but always pay attention to the little things You may stumble upon during your day. Someone might be trying to tell You something. Please never give up on yourself! Here is to a new year of mysteries! -Chelle
Sunday, June 11, 2017
Today has been rough a bit. Though I tried to push through it my best... My POTS is flared and has the upper hand today for the first time in a long time. I have had a virus. The past few days... Viruses are the worst thing for POTS it always has the potential to change the course of disease. (Plus I just had surgery) I'm very tachycardic to the point my lungs are having a hard time keeping up with my heart and my blood is thin despite my treatments to rebuild blood volume. I also noticeably can tell my blood is not circulating as well to my brain and heart. Leaving me so incredibly fatigued with any task. My stomach hurts everytime I eat anything. I keep going pale probably due to low blood pressure. I am dropping things because my hands keep going numb. Every step is like walking in mud it takes so much energy out of me. My legs feel heavy. Every movement in general is so heavy feeling it's like I have weights on me. My feeding tube is broken but okayish any day it's going to go. Luckily, I have my G tube on hand but it's going to be a big leap. This is POTS it's ugly and mean... I have a strong faith I will be fine. God told me so. But prayers never hurt anyone 💕 just have to fight this bad flare and put POTS back in its place. (I fight back) love you all 😘-Chelle #chelleshope #onedayatatime #fight #faith #prayers
Friday, June 9, 2017
I have not been able to sleep since surgery. Insomnia is a regular struggle for me. Thanks to Dysautonomia... But it's severe now. Obviously it is 1:24AM. But In the past 15 minutes I realized something... Maybe there is a bigger reason I can't sleep? I was not even on Social Media. But due to boredom I hopped on. Late at night you find several sick people. You find them because they too are suffering from insomnia or painsomnia. They are up worried. Or they are maybe in hospitals up trying to navigate the medical world. However in the past 15minutes I have easily managed to help 2 strangers. In rough situations. All I can think is maybe, Just maybe... Heavenly Father puts me in physical situations so I can be of help to others. Maybe I can't sleep just so I could talk to two strangers and help them along an already tough night. Maybe not sleeping has absolutely nothing to do with Me and everything to do with being available at the right time to help others. I also noticed tonight others weren't on like normal so it was pretty dead for advice. So I would like to admire that God puts us places at the right times. I'm lucky to be able to have the hard earned medical knowledge to help. It's not always fun or easy. But some days or nights helping others makes everything worth it in a sense. I guess it comes down to divine intervention and back to the helping others truly does fill your heart more then anything in this world. Help someone today -Chelle
Thursday, June 8, 2017
I am SO excited I got my Gastronomy tube in the mail today!!
Tuesday, June 6, 2017
I'm attempting to restart my vitamin regime. Surgery has pushed me off the wagon. With Gastropresis taking vitamins is a tricky task. (Though we struggle with nutrition so we really do need them.) They are rough on the Tummy. A essential trick for vitamins is to get them in a chewable gummy form. These are easier to digest then a pill. Also children's multivitamins are the way to typically go. They are easier to break down and a smaller dose so not to get your tummy too upset. (A smaller dose is better then no dose.) my current regime is children's multivitamin (with DHA as I don't get much of that by eating) the brand Smarty Pants donates profits of sales to women and children who are starving. That's why I bought these at Costco. They got me... After starving myself, I wouldn't wish it on anyone. It is a big deal! So if it helps a child somewhere I am glad to buy them! I also have the B-12, riboflavin, & magnesium for my Neurological issues. Specifically it helps reduce migraines. And I can always tell a huge difference if any of these 3 are stoped in my overall health. (Magnesium Glycinate is a form of magnesium that does not cause GI upsets) my neurologist put me and many of his patients on this two punch kick. He sees improvements and it's not going to harm you really it's a typical vitamin! (Check with your doctors of course though.) So POTSies those 3 are a win! And of course biotin for my brittle hair and nails! I am finally doing so much better with pain and going down on meds. I will finish out antibiotics and hopefully my mouth will heal completely! EDS causes slow healing. I am doing so much better though! My belly will be thankful to rid the antibiotics. They are the worst! I'm ready to start cardio again! It's driving me nuts not being able to do my cardio!! My body is slipping downwards a bit. It is truly amazing how important cardio is to POTS symptoms! I'm starting to move more but my body is icky and I am weak. I also can feel the POTS and the being up is not tolerated. It doesn't take much. This week is resting and working on good nutrition. Also hydration as I was dehydrated multiple times last week. (The worst thing a POTSie can do is dehydrate.) My body is struggling to drink still. It's a daily fight to get what I need in. It's also the week of starting to get this body moving a bit more and awake. But I will get there again. Hopefully next week I can start working towards getting back to my routine! I am missing my routine. But it's good to step away for a minute and see just how much that hard work I put in every day does pay off. Just keep pushing forwards you will get there. One day at a time -Chelle
Friday, June 2, 2017
I followed up with my oral surgeon today (he rocks) though I disagree oral surgery rocks lol... I have an infection that 2% of patients get. Oh yes, 2%. I know that sounds just like a Michelle statistic! Literally. I wish I could win the lottery with this good ole luck I have! More antibiotics, more time and healing. I am feeling the best today I have felt. Pain is so much more in control and going down. The hospitalist kicked me out (I knew) and told my surgeon I was out of pain and wanted to go home. (Well that was not true) my pain was breaking through on IV pain meds at rediculous high doses. So that explains the many days of excruciating pain. I should have been in patient for a few more days. Kinda frusterating but that's corporate medical care via hospitals these days. #awful! I loved the facility so sad the doctor failed. My surgeon was rad though and took good care of me! I'm sure if he was in town things would have been different because he took good care of me when the hospitalist refused to hospitalize me post surgery. (They changed their minds quickly) so more healing!
Wednesday, May 31, 2017
I'm finally home!! No place like home, truly. I also had a doctors appointment today. My heart rate keeps dropping to the thirties. (Yeah 30s) and after discussion we concluded its my POTS reaction to pain levels being oh so high. A normal bodies response would be a heightened heart rate nope. Mine is to slow. So now my condition that causes high heart rates also is causing low heart rates for me. I am not liking my new scary symptom! Hopefully now that pain is more in control this situation will line itself out! Low heart rate really!? (I can make it better by standing up 😂 broken nervous system). One week down hopefully the next week will go so much easier! Surgery is not easy on a POTSie. Obviously tachycardia to bradycardia. I've missed my Wrecker and I am glad to finally be home with him! He brought me every single one of his toys as I slept today. Haha. He knows when I am sick and he always takes good care of me.
also bleed a lot so he had to take that into play.) Tummy is better for sure then it was the other day! GI just placed me on a long hold until after 5 and hung up on me... Classy. Maybe one day they will fix their own mistake and get me a tube. Maybe I need an attorney? I do not understand this. (Now I can't call back until tomorrow).
How many weeks have I been trying to get a G tube? I've lost count... I will not quit trying. More rest and time. More soreness today. Let's heal!-Chelle
Saturday, May 27, 2017
This is my last surgery update I shall be good after this! However I am going to try harder to post more posts in the future of things besides health related... My mind has been full of thoughts lately as realities have hit of how far this year has come for me. The blessings I have received!Surgery is rough dudes! Not as happy this day. I think this has been harder on me then my Endometriosis surgery. Pain has been very difficult to control. In fact just barely got it back under control. (It's just not holding) That's been a major fight this surgery for me. Chipmunk Cheeks have only grown larger Haha. The ice has not come off this face since surgery. There has been a lot of sleeping for short periods but the second it hits 3hours my pain is out of control again. I'm hoping tomorrow gets easier. Tummy is of course growing angered with very high doses of pain meds and ibuprofen based pain meds too. Kidneys are not thrilled with Ibuprofen (they never like it) having a feeding tube has been nice to get good nutrients for good healing. But I won't. I can't stop eating my ice cream and things like that. Eventhough I can not chew or hardly get anything in my mouth😂 (I am being over protective of my eating skills. I have worked so hard to attain this year. If you don't use it you loose it. I will not let my stomach have a chance in any way to shut down!) the lady in the cafeteria crossed me twice yesterday. It did not work out for her so well, my nurse had to straighten her out a few times. My feeding tube has been leaking a bit I believe. Meaning it's broken I think. It's been in over two times longer then it should be.... We called GI to keep up the fight to get my G tubes. (they wrote the prescription wrong. Didn't put the tube size down. It's been 6 weeks of trying to get them to fix it... It consists of signing a faxed form home health pharmacy has sent multiple times.) prayers my tube does not bust! Literally. I need that thing! Hoping for more rest. Sleeping is the best but my body has been resistant as always. I don't even have to set an alarm clock my body is up and in pain before the next dose is due. Even when I sleep deep. I don't do things like regular bodies. Just need pain to stay in control. It runs rapidly before the meds do. So things up I'm simply recovering. Lots of love always! (I pray my cheeks never look like this again! This picture cracks me up literally you have to have a sense of humor in life!) ooh they got new heart monitors here and POTSies You will dig them! They are portable and tiny. You are not attached to the wall or any machine it's pocket sized and it also does not beep to you in your room it shows at the nurses station and beeps at them. It's like the best invention ever! Similar to a heart halter monitor....
Thursday, May 25, 2017
Overall good things happened today but the pain was not such a fun thing to have out of control. Bless the lady in the bed next to me in recovery we were on the same path... We hurt at the same times and our levels followed each other even when they managed to get it better for Minute or so here and there before we knew it, we both were hurting all over again. (Kinda silly, our poor sweet busy nurse though! My heart went out to her...So thankful for that sweet nurse. Kindness and doing your job correctly goes so far. So grateful for the real nurses out there!!) This Evening has been much better. I got to my room and changed back into my Wonder Woman T-shirt. (Maybe those super powers wore off on Me?) This day has been spend with lots and lots of ice on my chipmunk cheekies.
They were concerned about the nerves on the lower side of my mouth being damaged but I have been hurting in those spots all day with no numbness. Which is a blessing because those nerves can have permanent damage... Blessings! This surgery to get My Wisdom Teeth out was not an elective surgery. They were impacted and had to be removed ASAP. It was a legit problem. There were no other options or choices. I should not need feeding tube surgery leaving me hopefully sugery free for a long long while!! That would highly decrease surgery for me. Mom was by my side as always! I sure am lucky to have such a supportive Mother in My life! She doesn't even know how special and amazing she truly is! Love you Mom!! Through all the Ups and Downs! Oh and Deers!
Monday, May 22, 2017
Saturday, April 29, 2017
No help. A lot of judgement because though I was clearly sick and I had a fever as well, that would not break... But all the tests were fine. I was sick and I was afraid. The healthcare system definelty failed me Multiple times at this point! This picture I hate looking at because I remember it! And I just don't look well... one Year Later...YESTERDAY my GI was on cloud 9 and He is very amazed with my improvements over the past 6 months. It's truly miraculous and I do look so much better! The whole office buzzed lol (I've never been seen with makeup nor hair there. Just emergencies/hospitalizations and surgeries) I am keeping the CURRENT tube I have in. (GJ) due to wisdom teeth issues. Oh yes they have attacked me and I'm getting them out ASAP but of course I have to do it in hospital and it's complicated to get set up! And my Endometrosis needs more weeks to attempt to improve with treatments. Surgery can't fix it all anymore it's now complex & I get to fight it again with treatments. So in the event that the current tube comes out because it's way past its life expectancy and can fall apart (like last year remember that?) in that case he has given me 2 Mic Key Gastric tubes that I will replace at home on my own and I will go to a G tube. Then we will see what time brings and he thinks I will be tubeless in time but also thinks we don't want ANY set backs like moving too fast and agreed as much as he said he wanted to just yank the current tube, I (pit of excitement) I did need a tube to bumper my nutrition still. So to sum this up I will be going to A straight Gastric tube AKA stomach tube. So we are loosing the small intestine tube that bypassed the stomach completely. Truly major blessing here. I am SO grateful and blessed! IT ALSO MEANS NO MORE RISKY SURGERY FOR ME every few months 😊 (J tubes have to be done under surgery because they have to be guided into the small intestine.) so no tube surgery, which will only allow my body to become stronger and it will be less risks for my Dysautonomia to flare severely. (Andy type of surgery, sickness, pain will cause a flare that could be permanent and put me back in bed daily like I have been for the past years. But I have a strong faith though I won't be cured, I will be so much better and functional. That's what God told me that's what I will remember. I know that doesn't mean I will be perfectly fine. I just had a little flare up last night but I'm feeling better today. I also know better and my specialist how my body works in my case and how to help it win. Faith not Fears)
Friday, April 21, 2017
I've had a long day of appointments... (It's that time again ten hundred specialists to see) But I still got to laugh at this sign! "Healing is in the air." I stood there for a minute just to make sure! Lol Only at a Hospital will You find such a sign! P.S don't smoke! It's bad for You! No no!
Monday, April 17, 2017
Wednesday, April 12, 2017
What,You can not do tricks while typing?
Thursday, March 30, 2017
Today was rough around the edges but by looking at me you would never have known. I had painsomnia last night and probably fell asleep finally around 2 am. I woke up as late as possible this morning knowing I had a full afternoon. My Endometrosis/Adenomyosis pain level is high. Too high. (I hate those pain charts. In a scale of one to ten they ask... My responses to these questions are normally 50 or 100) but I wanted to get dressed and do my hair and feel semi human despite the pain. So I did it. I was going to hurt no matter what I did today. I also could not take any pain meds because I had to drive and obviously you can't do both... So I trudged through! I went and had my labs drawn out of my port.
We smile and give thumbs up when we get needles in our chest 👍 Gotta check those electrolyte levels with these POTSie kidneys I own... I then trudged forward to Walmart (cover my eyes) I hate going to Walmart. It's always busy... I park Handicapped and there is always someone who has something to say about it! (I can hear you talking ever so purposefully loud two steps behind me. No, I am not lazy, nor am I borrowing someone else's handicap sticker) Or they just glare at me... I get that I don't look sick... I truly do but in all honesty We hate being the center of a judge mental skeptical! Younge people get sick too. Most disabitlies are considered to be invisible disabilities which means, You can not tell by looking at the person. That person looks fine on the outside. But I had to get Orgain! And it's the only place I can find it... And I basically live off it. So to Walmart in between appointments I went.
Thursday, March 23, 2017
Though its snowy and rainy today the past few weeks have been gorgeous! And this girl has been tolerating the heat! )you guys I couldn't even walk from the car into a building without getting heatstroke the past two years due to Dysautonomia! (Praying it lasts and I can enjoy the sunshine again like I used to) here are some of my good days away week 💕 I am so appreciative MY good days! The days I never thought I'd see again in this lifetime!! I am so blessed beyond measure...