POTS awareness

Its dysautonomia month, and I know this is something I never touch on much anymore because my POTS is typically under control and it doesn't bother me as long as I am doing what I am supposed to do, and theres isn't a major storm hitting us, but being that is awareness month I figured I'd touch on my POTS a little bit.

If you do not know what any of this is, well dysautonomia is the dysfunction of the autonomic nervous system, this is the system that controls everything you do not readily think about doing, like breathing, kidney function, heart rate, digestion and a few other things. There are many forms this, its like basically saying I have lung disease. Well what type do you have?? CF, is much different the COPD which is also an umbrella term, which is different from asthma, and so on. With POTS what basically happens is my body can not control my heart rate, my blood pressure, or my kidney function. Which leads to an interesting life because on top of this I still have cystic fibrosis.

I have a few of my EKGs on my body so instead of talking about the ins and outs of what POTS is and what is does in my body because its all in here somewhere I am going to tell you about my tattoos. Its a very common question I get, and I have a few tattoos for my POTS as well as my CF.

On my chest I have an EKG from my first MRT, which isn't the the worse EKG I ever have, probably won't ever tattoo that one on my body. When trying to diagnose this disease my heart actually stopped, we stressed my heart out to the point it stopped. I have also been in v-tach which is also deadly but that not on my body either. So yes I do have a history of dysrhymias and I have often been threatened with a pace maker. But the tattoo on my chest is still a pretty dark story. I was actually admitted for a lung infection, and any time the lungs do not work, the heart gets stressed out to. What most people over look is the rapid breathing can also lead to dehydration which was completely over looked and my heart started to crash out, I couldn't get any air into my lungs at all and they had to call an MRT. This what they call to keep you from coding out or heart stopping issues. This was right after Wonder Woman left and she had to be called back in and the All Father came as well. I was clinging to life, couldn't breathe well at all, had an allergic reaction in the ICU, and well was pretty traumatized over all this. So in order to heal a little bit over all this me and Wonder Woman got it tattooed, one is the actual EKG from the MRT it read a 56 year old having a heart attack, I did not have a heart attack but my heart and lung did take a beating that day.

The other is the one I just got with Poison Ivey, she has been a pretty big part of my life and she is the one person that is always by my side going "were getting you new lungs." Its not a well... maybe... Its a confident positive light by my side that is unwavering. She is even wears purple and red lipstick for me because she's my little fellow villain and a hero in my story. She loves tattoos so we decided to get matching ones, a moon for me, a sun for her, and a quote to go with it. It starts on me and ends on her. Im her dark friend, goth/punked out most days and my story can be quite grim and never for a moment does she let me believe that. So we found one my EKGs and my heart rate resting that night was SVT, supra ventricular tachycardia, at 2 am and me doing nothing at 156 beats a minute. Doing nothing my heart rate was that high. I also had it much higher one night in the hospital but I do not know where that EKG is at. I am sure while I was in for both of those I was having issues with my lungs as well. Since Poison Ivey is one of my biggest advocates, and does everything she can with campaigns to raise awareness for not only CF and POTs but organ donations to help not only me but people like me. We permanently put our story on ours bodies. Yes our story, because this isn't just me this is us. She does everything she can for me so I can have hope of a stable life. So I can hope for a new life, and she does everything she can to let me know I am not alone in any of this.

This is what POTS is, outside of me running and IV and not retaining any fluid, its being in the hospital with my heart beating out of my chest, and praying for relief, while Poison Ivey is there to hold my hand and help with my financial burden and as well as awareness, its your heart going crazy and beating out of your chest while people surround you working on you to keep your heart from stopping. Its being breathless and sitting on the floor to hopefully calm your heart down so you don't fall down. Its a friend in the least likely of places holding your hand saying "we got this." It Wonder Woman changing yet another dressing, its the All Father carrying a heavy purse. Theres so much more to my story then I allow the average person to see which is why I have this blog. Sometimes its sobbing on someones shoulder asking for a bit of strength when I can't stand on my own, and other days its the girl with a smile on her face where nothing can stop her.

Is this a great awareness post?? Not really I could fully educate you on what my body does and why. But my brutal reality can some times be just as good. Don't judge a smiling face and think there ok, sometimes theres a deeper story you do not see. Take the time to get to know someone and not what you think they should be.

Love Yall
~Poppet

Blood Work

I had to see a new doctor recently not sure if I introduced him yet. I don't remember what the last blog said at the moment. I am still unsure as why there gonna do yet because we are still waiting for labs. There pretty rare labs and I had a hard time getting them done.

The first place I went was right in the office area of another doctor I see. Figured why not I am here, they were so rare they sent me to the large medical facility down the street. Which I had no problems with I am very familiar with their system. All the while I am texting the All Father and sorta updating on my round about ETA. Which kept getting pushed back and I need to stop at the Ulta right there to but anyways.

So I go into get my blood work, and let them know up front as always I have a PICC (not to touch that arm as it is against their policy to work with or put a tourniquet around it) and that I am allergic to latex because some facilities still carry it. My life can complicate others lives a bit. She had a few issues getting the lab work done in general. While she was putting into the computer she kept complaining about it, I was whatever about it because I knew they sent off the lab work anyways. But I was texting the All Father as all of this was happening. I was getting a bit frustrated and there was a snack in the truck calling my name.

So she finally gets everything in to the system, and she went to grab my arm with PICC, I told her thats my PICC arm, you can not use it. That could cause me a medical emergency, she went to explain she cant use it any ways. I explained I knew and was familiar with the policy and she just cant use that arm in general because of it. She looks at me and told me she couldnt stick a needle thru my tattoo. It was against what she was taught. I kinda looked at her with this what the... expression. I have been getting blood work done for YEARS. And I have been pretty heavily tattooed for past couple. Most of the girls who work with me just go thru the tattoos.

So back to this lady, I asked her why she could not do that and if it was such an issue that she could just use the back of my hand, since it was not tattooed. Clearly needles don't bother me, and she proceeded to explain she can't do that either and that it was to many vials of blood. I looked at her again like she was crazy and said fine get me some syringes ill do it myself. I can use my own PICC line. Her reason was "its not sterile." Well neither is my room, and if its such and issue with my tattoos why not?? She went on about my tattoos so I asked her well what do you for people who have 2 solid sleeves and no skin showing. She asked what I meant by all of this, and I said your issue is my tattoos, what do you with solid tattoos and no break in the skin?? She explained we go thru the tattoos but it could contaminate the blood. I have never heard of this before at all. No one ever seems to be bothered by them. So after I asked her what the true issue was she ended up go thru the tattoo anyways.

So I finally get in touch with Wonder Woman who works for the same company and asked her what the issue was. Why on earth are my tattoos all of the sudden an issue when it comes to drawing blood. No one else has fought me on this subject. Apparently its not an issue and the tattoos should not have been an issue in the first place. I was a bit frustrated because there was an issues made about something that should not have even mattered. I cant tell you how often I have had blood work thru my tattoos.

I just wanted my blood work done so we could get it back and see what they are gonna do with me. I am still a bit unsure about all of this but thats OK. I am sure later this week or next I will have more answers and I can update you on the latest of what they are gonna do with these silly lungs of mine.

Love Yall
~Poppet 

CF

Today is Cystic Fibrosis Day or Worldwide CF day, how ever you want to word it. I found out later in the day and at that point had no idea what to do. But what popped into my mind was the necklace Wonder Woman wears every day, "Cystic Fibrosis may have her genes, but I have her heart, Mom of a warrior."

I have spent the entire day coughing, trying to get this thick mucus to clear, and even been doing some yoga poses and yet my lungs are still a bit fussy. I think every time I have messaged J in the last few weeks I have been doing treatment or getting ready to do treatment. My lungs are in the mist of a set back and theres not a thing I can do about it. I just finished my prescribed dose of steroids and I have been doing more breathing treatments then I care to. You know what though?? Thats OK. Why?? Because I got to do what I loved today. My makeup, cook, text my family, and love on the B. Whose on steroids herself!! you know how hard it is to give a cat a pill?? Did you know they are super angry and starving on them as well?? Oh and I am watching my favorite TV show.

In the middle of this set back I got to celebrate Wonder Woman on her day. Thats what matters. The fact that I am able to present with her, convince her to buy a cake, and a book (or 4). I stop to catch my breath, sort my oxygen, take my meds, and spend time with her. I am able to do what I love still, and I am still fighting with everything in me.

I will admit I get frustrated with my lungs sometimes, I leave my oxygen places I shouldn't, and sometimes space out and miss a dose here and there. Its seldom but it happens, but there is so much more that CF has taught then to be diligent with my meds and not lose 50 ft of tubing. It has taught me life is such a beautiful thing and to be present in every moment. No matter how terrible. Its to make the best of my reality and not to hold my self up to someone else standards. I know we all can be guilty of that. Its hard to break that habit but its so worth it. We all have our "extras" in life, and some hide it better then others. I hid mine for a long long time, I wouldn't allow people to know my "extras" in life because they held them against me. They were not for me and had to cut them out of my life. I can not tell you how many times people have told me to quit and give up because I have CF and looking at just my CF its kinda grim. But I am here to tell you there is so much more to me then just a disease,  and you are so much more then your "extras."

Wonder Woman sees me at my worse, and at my best. She's seen me fight to cling to life, she's seen me over come, and she's seen my conquer. She's seen me fight just to make dinner, she's seen me enjoy life in the kitchen. She's wheeled me down the hospital corridors for coffee, and she's wheeled my IV pole while I walked. She's seen everything in between, whipped my tears, rejoiced, and question my next move because its never gonna be normal. And thats my life, with CF. Its makeup, its being a Chef, its stealing her pens, getting tattooed, and just plain loving life. With a little bit extra.

Love Yall
~Poppet

Lungs

I always the worse thing that can happen to isn't my illness, its the people who don't take the time to understand. They are the ones that put me at risk and could potentially put me into a serious predicament. I saw Superman recently and I heard my lungs are not doing good, and the last ER visit I should have been admitted. The doctor didn't take the time to understand my disease, and someone Wonder Woman has questioned more then once. And its frustrating. I am trying to keep my lungs as long as possible but feeling your lungs starting to give out walking thru a store by yourself isn't fun. This potentially is fixable, and have all the confidence in the world  but I am so frustrated. Though since I didn't get admitted I go to get tattooed with Poison Ivey. She proudly wears me EKG and my hand writing, and I proudly wear her art and hand writing. I also. got to spend time with Wonder Woman at work and meet some truly amazing people. Good with the Bad. You have to look at it that way.

With my lungs and such, everything has been put on pause. My cookbook, my youtube channel, and just some every day things. I woke up pretty breathless this morning and it was a bit frustrating. I feel as though I am on everything I can be and I still have the fight. But isn't life a fight after all?? My battle is just a bit different then everyone elses.

Then I have to go in and see if I can build an immune response to things in a safe way to see about my immune deficiency. I am not sure how this is gonna end and I am almost scared to google it but I do want to keep my health under control, I want to have as much time as possible with my family and those I love, I want to stay being the pup sitter to the sweet pup that has my heart. I have so many goals that I fight for daily, and one thing to make it easier would be so lovely. I can do tough, in fact I do it daily. I refuse to let my diseases be the determining factor of what I do in life. I refuse to sit by and let CF take over. I am who I am because of my diseases but they are not me, I am not my diseases. I am so much more then that. Is it harder for me to follow my journey and my passion?? Probably I won't full out say yes, because we all have our obstacles and journeys. And I am here to yell, that it all can conquered with love and dedication.

I am also so blessed I have a family that doesn't allow me to stop because I am sick, they encourage me. They pray with me, the pray for me, and they love me so unconditionally that I don't stop to think that I can't do this. I know that I indeed can. So I have had another set back, yes we are all worried. But this to can be over come and conquered.

Deadliest Catch is on so I need to get off of here because this is the one show that I love!!

Love Yall
~Poppet 

Update

A lot has been going on. I have been non stop busy and if I am not busy I am sleeping including during the day. I don't know where to begin or where I left off so ill start at the beginning and just assume I have not post anything.

My heart is currently stable. I have 57% heart function and the damage has not progressed and though I have dysrhymias I am not in heart failure and all of it is just because I have POTS or my lungs put some added stress to my poor heart which makes it work a lot harder then what it should. I know earlier today my heart rate was steadily risen and not much could be done about that and we are still treating it as naturally as possible and that is a doctors orders and nothing I asked for. Which I am so thankful he's willing to help me stay off a lot of harsh medications.

Then my cat had an allergic reaction. I do not know what to, or how it all started, she kept trying to swallow was drooling all over the place so we took her to the kitten ER and by this time I am hysterical, poor Rubes is drooling I saw the lump under her tongue and I tried to force Benadryl down her throat, ended pulling her nail out of my skin, and we had to rush her to the closest animal ER. We get there and they wanted to biopsy it for cancer, cue the hysterics once again, and both my parents trying to console me because they know she's my baby and I'm really worried about her. We got her home and we were patiently waiting for results and it came back a really bad allergic reaction and my cat needed steroids. Oh my gosh that lil ball of floof who looks so innocent when she sleep has the cutest steroid grump face!! So maybe 3 days after we started her on all of that, I couldn't catch my breath...

We tried everything at home, and every time we got something moved and I could get air out which felt like relief id take a breath in and get it all stuck again. The secretions with CF can be super thick and stress with MCAD not a good combo. So I ended up in the ER for a couple hours and we got everything stable and got me home. Maybe 2 days later I was calling Superman because I had an infection settling down into my chest and we didn't want it to settle and cause some problems. Then since we shut down Rubes' immune system with steroids she got a Kitten cold, and now she's on antibiotics to. Yes it is OK to laugh because this only something that can happen to me.

My life is never boring. There is always something going on and suprisingly Rubes was a very good kitty for her doctor and I had to explain to people her formal name is Robopuppie. I am the farthest from normal you could ever be. But its all good because I love my life and the people in it.

Love Yall
~Poppet

Love and Light

It has been a long week!! I am not even sure how I made it thru. I have been so stressed and so frazzled I had a drink, and I was allergic to my mixer. I am totally ok I think. I am usually very in control of my emotions, this week not so much. Which not even a week a go, I got to see the ever so beautiful Frigga and she was talking to me about how choose to react to things, and how can choose to stress over things. This was not long after we re-did the kitchen because my allergies were no longer under control.

Emotions can be quite triggering for my disease, and its one thing I have to keep under control. They can trigger my allergies, they can trigger my CF to go down hill, and a whole list of things to go wrong. I normally meditate to center my emotions. Its a time where I clear my head, relax, and to just focus on myself and nothing or no one else. The phone is on silent, everything is off and its me time. This controls my blood pressure very well, it keeps it stable and keeps my heart rate stable. Also when you mediate you focus on your breathing which has taught me how to consciously notice my breathing and try to even it out in the calmest way possible. My breathing can get very rapid when my lungs are doing so hot, or my heart rate is spiked and I have to stop and do controlled breathing. This helps me a LOT. I was such a ball of nerves this Monday that Wonder Woman had to stop me and tell me to go "center my zen" so I could calm down. We had a bit of an emergency that I just did not handle well at all.

Once I finally calmed down, and even out all my emotions, I remembered what Frigga told me, people and situations do not stress me out, I stress myself out. I am in control of how I react to situation, I am in control of how I let something or someone make me feel. I choose to let people make me upset. So I tried to bring myself away from everything going on this week and I chose to look at the positive and when things get over whelming to stop and remind myself I choose to react. When someone is mean to me, rude to me, or just plain belittling its up to me to choose how I react. Its up to me to walk away and not reply back to the situation. Its up to me to stop and be thankful for whats to come. Though this is for my daily life this can be for my health to. Its just a matter of when things go wrong, and its a matter of when I need to try for lungs. I have two ways to look at this, celebrate a second chance at life, or be upset that my life has come to this. I am often caught dancing with my cat pretending I can breathe find. Why?? because that makes me happy. Because for a moment I have made a choice to enjoy a moment.

What I am trying to say is, next time you are in a situation where you want to blow up, and just yell and scream. Smile, take a deep breath, walk away, and remind yourself you do not have to react to a situation, You do not have to react to negativity. Our actions are a choice in life, and though we do not always get to choose a situation that comes into our life, we can to choose how handle it. Do everything with love and light and see your blessing start to come.

Love Yall
~Poppet 

Homeopathic

Before I start this blog, please know that all I am taking about has been cleared thru my medical team and is safe for me.

Homeopathic comes a lot with my health, it has become popular over the years and usually the first thing here*" or "are you a Christian you probably aren't because..." They are always taking back by "yes I do use homeopathic and yes I am a Christian." I also control my diet, to add to the shock even more. Now I am not saying this is everyone and I always encourage anyone to ask me any question, I love to share my story and educate people on what my life is like.

I keep my medical group pretty close, and its a pretty small group which is totally ok. I have my natural health, my spiritual health, and my physical health all wrapped up and I am so thankful some of them over lap. Being chronically ill you need a support system, you need someone to vent to, you need someone to help, and it makes it easier when everyone is on the same page and listens to my needs. My health is still slowly declining and we are in the season where ti takes a pretty hard hit. But this is the first summer I have gone into it with my homeopathic team. I am so blessed I have met Frigga and I am so blessed she has helped guide me thru all this. The first thing she helped me with is, essential oils, she found a cystic fibrosis page for people with CF, families with CF, and the medical professionals. She found all these great oils and they have really helped me out, she also got me some malabeads so I can learn to mediate.  A year so later meditation is part of my health routine, it keeps my BP normal on stressful days, and I have learned to listen to my body. We also started negative ion salt lamps to help thing my secretions or keep them thinned over night. And when we all found out I have a poor immune system we started me on more oils. Which they work!! Now a days when I have a major asthma attack, oils are a part of my regimen. I do my nebs, I take my pills, I do my PT, and I put breathe on my chest and in my diffuser. Its now a part of my nightly routine to use these oils as well. That has become a recent thing.

I use mild forms of yoga as my PICC dressing can get pulled and the All Father taught me Qi Gong, and you can commonly find me in the kitchen deep breathing and doing one move and just being a traditional hippy. I mean who else does random center moves and dance around the kitchen while they cook?? Ok that probably is a me thing. I get some stairs from people that don't get it, and thats OK. I eat food that help clear my lungs and do not eat mucus producing foods. I eat a lot of cayenne to. There are so many things that we can do to help keep my breathing as easy as possible and we all have found ways to do it, I have also been open to the help and readily ask people for help now a days.

Homepathic and western meds can work, mediation can work, diet can work, if you know how, and if you keep your mind open. The mind is such a powerful thing. Also I use all this stuff with my medications, my saline is going, my oxygen is going, Ive done all my meds, and now I am sitting here with my salt lamp because my oils need refilled and I just need to get up and do it. I know some of this is controversial to some. I have been told how people look at me when I mention some of this, even when it comes to meditation. So please be open to all this, and if your team clears it its worth giving it a try.

Love Y'all
~Poppet