Rain Induced Migraine

(This is me in the dark... Migraine style!) I was so proud of my body handling the rainy day like a pro! (Well actually I was pretty shocked.) I went to my appoiments today. I was doing great! But about the time I made it to the dentist my migraine decided to make itself known. It wasn't bad at first (those are almost the worst kinds they slowly get worse and sneak up on you.) because of the sneakiness, I know I always talk myself out of treatment. The reason I do that is I think, "Oh, it's not bad enough yet." As it's slowly creeping up on me. I tend to wait hours with these kinds of migraines. I typically reach for the Tylenol at first (I always think it's just a headache. My bad!) but truth be known I just have migraines too often and I get confused. The nausea I have regularly so it doesn't phase me as a sign. The spottiness in my vision (well when don't I have something odd going on?)  I also seem to have some form of migraine denile. I do not want migraines.... So anyways at 9:30 P.M. I broke down and used my migranale nasal spray.(it is a migraine medication that treats migraines on the spot.)  It's helping! I still have my symptoms... Hopefully the second dose in a few minutes knocks it out completely!! My feeding tube needs to hold on for two weeks and the it can totally take a hike! I'm done with it falling apart and feeding all my stuff! I also have a big hunch that its malplaced and back flowing into my tummy (I pushed meds and it burned my stomach... That's a clear sign it went into my stomach not the small intestine. Boo! Maybe that is why I keep struggling with formula feeds??) Oh the life of a POTSie. Jump the hurdles, keep up the fight,& hold high faith that hope and healing are in fact ahead! Along with better days to come. I'm not loosing my smile today because today I conquered #LivingChronic 💪 and this migraine is not going to have power over my goodness in this day! lots of love Lovies -Chelle 

Presidential Actions? 9-27-16

I think I will write about the hot topic of this very fall day...I have something to say. I have never in my life seen so many thoughtless, childish  tactics (specifically on social media, coming from adults) over a presidential debate. It shocks me to see so many nasty posts over and over again. Now I realize we all have our own opinions. I'm not trying to change anyone's opinion. (This is my first and only post over the presidential race.) I simply am pointing out our actions. Why be nasty over social media? Why tear down one another? Does it really solve anything? Does is really change anyone else's opinions? Besides probably what they think of You... Or is it simply just sinking too low? What kind of world are we living in where our actions, even bad don't have any consequences? Have we lost all morale visibility as a country? Our country is diverse. We all are going to have differences of opinions. But since when does everyone HAVE to agree on everything? And if they don't agree, they are either offending someone or stupid? We are all entitled to our own opinions. You might remember the phrase, "common curtesy." One phrase I knew while growing up. It meant being kind to everyone. No matter what, holding respect for another wether we agreed or not. Now days that word keeps coming up in my life as a question, instead. Simply phrased as, "where is the common curtesy to one person to another these days?" In day to day life... I know our presidential election coming up is very important to our country for various reasons. But the second we loose respect for another individual and choose to make fun, ridicule, and attempt to tarnish. We in fact are not sending the message of Christ like love. What are our actions saying? Are they showing a trend we would want our kids, our future kids, or the youth now to see in us? Would Heavenly Father approve of these actions? Are we even thinking in the moment? Are we setting an example?  Or did we too fall into the vortexes of the evils of our world? Did we fall to where we don't recognize that right is still a right and wrong is still a wrong. Everyone can have their own opinions on things. That's perfectly fine. We can express our opinions openly. (And we should) But what is not fine is disrespecting others. Or choosing a wrong action while striving to make another agree with you. I think Sister Bonnie L. Oscarson said it right this weekend during General Women's Meeting. Quote, " Certainly Sisters we need to use sensitivity but let's also use our common sense, and our understanding of the plan of Salvation to be bold and straight forward when it comes to teaching our children and youth thee essential gospel principals they must have to navigate the world in which they live. If we don't teach our children and youth the true doctrine and teach it clearly, the world will teach them Satan's lies." I think we all need to take a moment to think of our actions. Especially during a political race. I think we all tend to forget that actions speak louder than words. Another thing I think we the adults are forgetting is that copying others simply because your friends are doing it too... Does not make it a righteous action. I think what our country needs the most is more love. Less hatred. Keeping of respect for not only ourselves but for others. (Even when we don't agree. It is okay to disagree, respectfully.) I think we can all post or voice our personal opinions with keeping love in our hearts. And the old phrase, "If you don't have something nice to say about someone don't say it at all."  Let's not forget who and what We are. Because I know each and everyone of us are too precious to loose who we are supposed to become. Just a thought for the day. Love always-Chelle                                                  The quote I was referring to above. This link is down below.. If you want to view it... https://www.lds.org/general-conference?cid=HP_SA_24-9-2016_dPFD_fLHNA_xLIDyL1-C_&lang=eng

9-26-16

Today is brought to you by no sleep and a dose of Tylenol... Literally! (I was looking at my last update and I realized I made it sound like I am on a lot of pain meds always. That's NOT the case. I only take it a few days a month. (On my cycles, tmi. Sorry but if I'm gonna update and raise awareness... I have to be real.) and it's temporarily. That's the purpose. But that is life with Endometriosis and mostly now PFTM. Since I just had excision of my Endometriosis two months ago. I take Tylenol or nothing for my chronic daily pain... If it's too much I contact my neurologist because we need to treat the root of my small fiber neuropathy, (that's a neuropathy of the small fibers in the tissues of the skin. It has a legit test that they diagnose off of. They take 3 skin tissue biopsies and send them to a special lab in Texas. It causes skin nerve pain, messes with sensory of the skin like touching something I probably "feel things" a bit muted or hyper depending. It makes you feel like your bones are hurting . Finally an answer to that! Body aches. My skin literally gets red, swells, and burns. About half POTSies have this and the others who get it have some form of a skin condition. Lone and behold! I have Livhen Planus and autoimmune skin disease. Where my immune system attacks my skin at the dermis.) Dysautonomia, or chronic migraines. That would be use of anti seizure, nerve pain, migraine meds... If my Gastroparesis flares up to a point of not tolerating my GI hospitalizes me. But for now we are recovering still from my last surgery (I am cleared but it's going to take a while to get back into therapy and get things lined back out. Surgery worsened my symptoms. But it needed to be done. It worsened my PFTM and that is typical. I have a disease growing inside of me literally and on muscular walls... So therefore the body reacts to that. Now we treat the rest of the pelvic chaos and in time my pain will be back in control.) My lack of sleep is caused by... My poor pup is having issues again! I am honestly baffled. But we are taking good care of him and he is doing quite a bit better today. It's his eye again. (Well under his little eye gets swollen. He also had a little blister both times.) it's healing. He is super moody from it. I do not blame him. Bless his little pup heart. This eye issue has fully healed and has been gone for weeks and then like a switch is right back. He needs some healing vibes!!  Sleep is pretty crucial with Dysautonomia. It gives our nervous systems a chance to "reset" while sleeping!! I am also not tolerating my feeds today. Which is not helping my sleepless, worn out body. I did just get some juice in. My blood sugar must have been a bit low because I perked right up about 30 minutes later. (I used to struggle with fluids worse than solids... It's so strange how my body just flipped into letting me have some fluids by mouth. That is such a huge deal!! ) And I have some speciality foods by mouth. But my Gastroparesis is still very present. I do need formula and I have been struggling to get formula in. (Hoping my tube change next month will help that oddness.) You can tell. I've lost a tiny bit of weight. And I dip but I am trying!! Eating by mouth is fun and hard at times. I can not eat foods That I ate before tubes. So there are moments of getting used to new foods. Moments of trying to find nutrient enriched foods. Moments of craving crazy foods that previously I used to eat, like enchiladas? Um no! I would kill over for a week if I did that. Yet I have been craving those for two weeks now. Foods I haven't eaten in years!. And a lot of trial and error with food experiments going on right now. But I still have to take my nausea meds several times a day. And I made the mistake of eating an regular yogurt. I should have eaten a non fat yogurt. Well I definetly paid the price... See Gastroparesis, where fats and fibers technically are your enemy. They don't make us sick like an allergy. They slowly  digest. When your tummy is broke and can't process foods... If you put something in there that takes a lot of mushing (p.s. Tummy is paralyzed it's not gonna mush. However it will spasm like a maniac.) and slows things even more. You will in fact be in pain and vomit. It's the law of Gastroparesis. (Wink). I have blood work to be done today. Blood work seems to always come on an already difficult day. In POTS we have low blood volume. So taking blood out of this body is not the funest of tasks. I got a little extra sodium and water in me to help the process! But every two weeks because of POTS I go and get my electrolytes checked. I am on electrolyte replacements. So we have to keep an eye out for low potassium and Magnesium. We watch sodium, another electrolyte but it doesn't test low when low by blood. But since I replace such an abundace of sodium (24Grams) per day we want to keep an eye on it to make sure it is not too high. The first thing I did today was pray. I'm positive it's how I am functioning at all. Some days are entirely battles like today. A broken body is a broken body. I am simply thankful for my blessing in this life and the comfort of understanding the bigger picture of eternity. I might not understand it all in today's time but I truly believe all things happen for a reason. We are here to learn and grow. That's the task is to learn and grow while keeping hope for a better future. And to just keep trying. No matter how blind you feel to your future! Had to share my positives. No matter how little they may seem my little strides are big strides! 😊 -Chelle 

9-21-16

Well I survived another down and back trip to the pheonix and back, all in a day's work. I am so fully fatigued. Today was a long day of pain and travels. My doctor prescribed some pain meds for my pelvis and we will continue to wait on physical therapy. (Will start in November) Then we can start working on recovery. Until then it's keeping my pain at bay while my pain is out of control... There is not time frame for how long this. Journey will take its literally one day at a time. Now if I could just find a pharmacy who has my meds in liquid form. Being a Tubie is thoroughly complicated! Next month we will be replacing my GJ (feeding) Tubie to a button. Yay! I have some nice granulation (scar) tissue from my terrible tube I have in me now... The bumper is horrid and is not staying in place. But my buttons do not even need a bumper. I am really excited to get my button back! I am so tired but thought I'd give an update. We are simply practicing our patience and praying for the best healing-Chelle 

9/16/16

My Gastroparesis and POTS flared up! I did get some sleep last night. (Yay!) Heart rate is high and Tummy is so very angry at me! Whoops. Tummy is bloated. We are currently on a formula and all liquid diet. We are letting GI tract rest a bit. I feel lucky I can still sip my ginerale!! But on the bright side, my eyes are so much brighter today!! We will take any and all victories!! I had a rough night with my symptoms and in return am a bit dehydrated and hungry today. 

Hanging with my bestie -Chelle 

POTS life Day

This is not my highest heart rate by any means today but.. I have been up in the 130s ... I am not going to continue to stand to show you. I am out of breath just standing for a few seconds. This means my heart rate is high enough it's a workout to just stand. Also that my lungs are struggling to keep up with my heart upon standing and that I better sit myself down! Now I am a pass out risk! Phew! Having POTS is hard work! (Literally) .....  Can You believe all this sodium??? (A months supply)... What a visual!

I am so very tachycardic today! My body is not too thrilled today... I'm upping sodium still. But I've been fighting with insomnia for the whole week. I didn't get any sleep last night. Even when I am sleeping I am not entering any good REM sleep. I go through these phases. It's a part of POTS. But my body really needs sleep. When we sleep our nervous system resets. So without sleep my nervous system is running wild. The lack of sleep is adding fuel to the fire of symptoms. It's causing the insomnia (the cause) then due to the cause it's creating the problem (POTS symptoms at a high, problem) so then the high POTS symptoms add to the insomnia. It's a viscous circle! I also am fighting my GI tract. It's being stubborn. All I want to do is sleep... Everytime I get up I feel sick. My heart rate gets really high and my hands and feet are purple. A sure sign my blood volume is not only low but my blood is being pooled to my limbs instead of being up to my heart and brain. I am sure I am having low blood pressure too but I don't feel like going and getting the blood pressure monitor. It won't change anything to confirm my low blood pressures. Lol migraines been coming on for about an hour now. This disease is truly a monster! So next month be prepared for Dysautonomia Awareness (October). Meanwhile for today I won't be standing-Chelle 

Update 9-12-16

Wrapped up and ready to go...

Today is an oddly emotional day... I am saying goodbye to me Iv pumps (fingers still crossed). I was really anxious about returning them... Until I realized they have no purpose without IVS to go through them. Lol I do not even have an Iv so, it makes no sense to keep them anymore. Even if I need them they can't help me without IVS. So as good as this is, it's a bit nerve wracking to loose IVS if you have Gastroparesis and POTS. I mean don't get me wrong home health can always send me IVS and a pump but it's still a funny feeling. On a brighter note I was on a lot more then 10grams of sodium per day while on IVS. And the goal is to get it through my J tube (sodium and all) I was on 24G of sodium per day. Now I'm on 10G. It's rough I'm so little so that does sound absurd. Honestly when I found out how much sodium I had been on, I panicked... I was like 24G??? That is so much more than 10G per day. Then I also paused and thought (wait? Why am I not having "side effects" of too much sodium) Well, it's because my autonomic malfunction is messing with my kidney functions. Basically our kidneys pull sodium back into the body so it can be used. (An essential electrolyte. We need sodium to live just a little knowledge) but my kidneys take my sodium and throw it away. My kidneys take my sodium and say, "we don't need this." And I pee it out. Instead my body should be using the sodium for many other functions. All POTS patients have this problem. It's why we need to replenish our sodium levels. However they have agreed that my kidneys really suck when it comes to this. They really like to throw away my important electrolytes and they in turn over produce urine... My kidneys can literally dehydrate me, wether I get enough fluids or not.) so anyways I need all that sodium along with a medication that helps the body essentially hold onto sodium...if I don't get enough sodium my blood volume will be low, (which will not help it circulate up to my brain) my blood pressure will be low, my heart will have to work harder and beat faster... And a lot more. So we have some room to work, but my GI tract has to be able to handle it too. My life is seriously a series of catch 22. (I think that is life when your automatic bodily functions break.) I feel like a zoo keeper because honestly that's my condition. That they don't even know much about... I have to try to control automatic functions in my body... That you have no control of... And the specialists get just as frusterated with us! It's purely frusterating! But the good news is I am safe with my sodium. Neuro even said he went over Lab work and I am fine, (we do labs to test hydration, which is sodium, potassium, magnesium levels.) So that made me feel better too! Even POTS patient who have full functioning GI tracts struggle to keep hydrated and to get so much stomach irritating sodium in... A lot of POTSies are in IV fluids due to this. (I think if our kidneys just would work, wow out disease would improve!) Up and down and all around #LifeWithPOTS ! But good news on the GI front I ate my first vegetable in years!

(Well minus the 5 baby steamed carrots that killed me over a few weeks ago)... Plan B. Purees veggies... (NVeggies, fruits, and meats are the hardest to digest. They also don't fit in the Gastroparesis low fat low fiber rule of thumb.) So we have to get creative! I also bought baby spoons... Weird I know! But if you are a quick eater... With GP you have to find ways to eat smaller bites to help aid in digestion (hence smaller bites). Since I am eating by moth lately... That's something I struggle with. So we try! That's all we can do! My feeding pump literally beeped all night (for no reason) it said I had no food left and uh, the bag was full? Seriously? So I faught with alarms all night long! So of course I got on the phone and said bring me another pump (this one was about to be thrown at the wall last night.)  That is basically my update just working on getting food in by mouth,keeping my j feeds up, getting my sodium lined out, trying to stay off IVS!  ...I have been sickly but we are thinking it could very well have to do with needing more sodium...because I have basically just been laying around. Which was not fair after having that long good spell! I will start physical therapy in November for my darn pelvis. I did have a good day Friday. I got ready for the day  and I went to the store (that's a good victory in my life) 

I stumbled upon these super cute flats...

And psh no I am not that tan... But some of us have to compress our legs... Thank you! Hey redheads! Don't you all wish our skin tone came in anything like pantyhose, or makeup! (Me too) (It's fall Y'all & I am weirdly into it this year) 🍁now I get to go see the vampires to take my blood to monitor all I just told up about! 😊 One day at a time-Chelle ... I didn't post yesterday, 9/11... I was not very old when the attacks happened... But I was watching some documentaries yesterday and I am always just so shocked at the amazing, brave people who were involved. I just wanted to say. Pause and be grateful for your loved ones. Pause and take a moment for the families and victims of 9/11. Keep them in your prayers too this week. https://m.youtube.com/watch?feature=share&v=gPHnadJ-0hE  Xo-Chelle 

Choices 9-6-16

Sometimes being sick is overwhelming. It brings up a LOT of mixed emotions. Like right now I have been down for two weeks. My body is just in a lot of pain and I keep getting migraines. My body is also very upset with the the weather changes, and the monsoons... My pain is not only chronic... it's getting out of control on a daily basis. Not typical to have daily out of control pain... Chronic yes. Out of control?

No...Which means another thing.... My brain is like "um? Hello? Don't you know you are not okay!?" And I am okay!  Yes I am in a lot of pain and stuck in bed or on the couch. I am so incredibly fatigued. But my body really thinks it's not okay (a normal body reaction... It's in pain, it's sick, so therefore it's going to signal to me that I am not okay.) and though I know I am okay...basically at this point all I can do is let my body do its thing. Basically I'm sitting here and letting my body fight itself. (It's like waiting out a toddler's temper tantrum... You can hear it. You know it's there. But you know it will be okay. So you sit there and let it pass) I'm just sitting here watching my body go through its own tempure tantrum...  It's upsetting to be this way. I've been stressed out that I have been down. But as I have been trying to do everything I can to "make it better"... I came to the conclusion that all I can do is simply the best I can do. I am taking my meds. And laying around the house. Do I want to be? No? It feels like a waste of so many things!! But it's truly the best I can do for my body and if it wants to throw a fit I have to choose to just let it. I have to just wait it out and hope for a better time. Let it pass... I can think of a million things I "should be doing" off the top of my head. I've been letting that eat at me all week. But is that really going to make my body stop and feel better? No. There is a lot of things I "should" be doing but I simply can't right now and that has to be good enough for today. Nothing makes me more mad and frustrated then, being chronically ill. But I don't have a choice! So, I can get upset and emotional or I can take a deep breath and let it go. You can only do the best you can! Beating yourself up for things you can't control because they aren't the way they "should" be. Will get you no where! -Chelle 

Updates

I was really excited when I woke up feeling well and with energy. (Not totally drained) I know I have been posting about my wonderful positivities lately (and they are amazing huge blessings!! I am eternally grateful) but I am still sick. I am really dealing with pelvic dysfunction and it's not easy... Especially post surgery. I won't be able to start physical therapy until November. It's backed up that far... And keep in mind I will have to travel once a week three hours away from home and back three hours... That's not easy on a POTSie body and I don't have a choice. But today my pain hit hard again. It's just like flash backs and panic... I know I will be okay, it's going to take time. My specialist said surgery would make it worse. She wasn't surprised at all. It's just I'm sick of getting worse to get better. I think a little panic sets in as I am remembering how much I did go through and how I have to re walk that path. (Hopefully I heal faster and netter now.) that's been rough. I've had chronic migraines. I have been POTSie for the last two weeks. And when the weather started shifting from summer to more fall like... My body decided to freak out over it...( I do this every year)... I am reaching feed goals. Which is exciting but it's a full fight daily. But I keep reminding myself I will get through and we can do hard things! But it's rough with the nausea. The the nausea meds seem to just add to the fatigue. So yes I have made improvements with my feeds and no IVS ... I am so so happy but I'm still sick and fighting for quality of life and to be able to get up out of bed. I hope when I am cleared to have more excercise that in itself will help my POTS. And when the weather finally makes the full change my body will calm too. I just have to keep having hope and faith that things won't be perfect but they can improve. Studies are being conducted and hopefully better treatments will come because Dysautonomia is truly awful. It takes perfectly high functioning people who are young and throws them into a whirlwind of sick, being stuck in bed, it's stealing and wrecking our life's...also if I don't have my hair and makeup done, I am not having a good day. Despite my smiles and positivity. I am physically not well...a lot get confused but I promise no makeup is equal to not a good day for me... I do believe God has a plan. I do believe we are rewarded for our hard times in the next life and in this life as we grow, learn, and gain eternal perspectives! Keep fighting just keep going!! Okay? I will be along side you xo-Chelle P.S. Wrecker was so much better and I was so relieved!! But then two nights ago he got his eye scratched and bleeding... Poor little guy we have him on antibiotics and some sort of spray! He is improving!! ( all we can assume is something stuck/ stung him in the eye, poor puppy... Because since he Yelped in the yard, outside that one night a few nights ago...he has been afraid of the yard since. We are working with him and he is loosing that fear. So taking care of my pup. I hate this so much!! But he is looking better and acting better today for sure) poor bestie 💙 lots of puppy love for the Wrecker dog!! No he is not sick, just something with his eye. He eats, drinks, and barks and plays. The animals in this family the past little bit🚫more of these shenanigans!! All our animals in our immediate family have gotten sick (none related, it's truly strange) #dogupdates 

9-1-16 Puppy Prayers

Working on getting my sodium lined out today. (Will be glad to have that situated) well, I hope it gets lined out today I am about out of my sodium... That's not going to go over well.... Pray I don't run out! I am still fighting feeds but getting there! But my poor pup is not feeling well! Oh Wrecker Dog 😕 I don't know what is up with him... I can tell his face hurts because I can't pet that one side and he shakes if I do. I decided to monitor him and see. He has been eating and drinking. He is also alert. But he is so sleepy and just you can tell he hurts. I have him the right dose of baby aspirin. Poor little thing!! I am not liking my pup being in pain! (I honestly don't think he is sick I think something is hurting him.) we are both laying on the couch this rain has got me supine. 

puppy prayer for my best friend please-Chelle