Monday, January 15, 2018

Water Victory

After over a week of eating very little food (or none some days) drinking 500ml in three days total (the past three days)... I just finished a WHOLE bottle of water!!! It may be a sleepless 2A.M. But I drank in a few hours time what I have been trying to drink for days! ๐Ÿ™ Seriously, it is the little victories in life. I'm clearly not in the clear I need more fluid and I need food. I would have chosen to be admitted to the hospital days ago but I am SO afraid of hospital Flu germs right now. So I chose to be tough. (It's been hard to know what to do. You never know what the right decision is completely.) I know GI wanted to hopefully ease the flare and keep me safe nutritionally... But with the flu, it's a risk of so many factors for me. The flu with horrific nutrition? The thought of the flu with Dysautonomia alone is horrific enough! But the truth is you can only ride out a Gastroparesis flare. There are no real treatments, there are no cures, there is nutritional intervention but that's not actual treatment for Gastroparesis... It's just a life line to stay alive nutritionally. One I have been grateful for in my life. However I have been nervous wondering if a feeding tube is in my near future. Again. But Today I had no brain function it felt, I was limp and I got frightened. My body is malnourished. I feel it. I remember malnutrition. It is crazy what a week can do to a person. One day things are okay and the next you can't eat anything. That's my reality of Gastroparesis and Dysautonomia. Just feeling very blessed right now for my bottle of water. I will take any blessings and I will be grateful for them all. No matter how seemingly small it may be. I don't know what the next week will bring but I know whatever it brings the Lord will guide me through it. I will rest in him always. I am hopeful this is a sign of better gastric motility? I pray this ugly flare ends soon. So I can eat again and feel safe.Time will always tell all. -Chelle #starvingforacure 

Friday, January 12, 2018

Gastropresis Flare

From one day to the next... I was sick both days but Invisible illness is real. I look fine but I am not. One on the left, yesterday. The one on the right, today in an ER getting fluids with IV medications, praying I don't get the Flu. 

My Gastroparesis is flared. I haven't been able to eat anything of substance for 6 days now. Every time I sip Orgain, I get sick and hurt. Paralyzed tummies spasm so it's very sore as well. I am on liquids and a few crackers here and there. I lost 4lbs this week. I do not like the way this feels. GI told me we might have to do a three day admit to get control of symptoms and hopefully restart eating again.(which I have done those admits many times prior.)  I just got out of the ER. I needed a lactated ringer (IV) and some IV medication for nausea. If things don't get better, I will have a feeding tube again. What is hard are the memories that come back. Yet those same bad memories are surrounded with good ones full of pure Heavenly love  & Blessings. Which makes this rough patch more comforting.  One day at a time and lots of healing prayers -Chelle 

Monday, January 8, 2018

I Don't Know.

I hope everyone was able to enjoy their holidays! Now that the Holiday season is over I thought I'd update again.
My Blood Pressure was stable for weeks. But my health never bounced back really. I think I had 2 good days in two months time. Last Sunday it decided to go back up to the stroke zone again. I found out due to the massive migraine that accompanied it. (It made me check my Blood pressure) This round the blood pressure seems to be triggering the migraines. Since I had restarted the Fludrocortizone again with doctors okay... I automatically stopped it. Since then my blood volume is non existent (if you ask me) I'm pre syncope basically all the time. I walk like I'm drunk. So if you see me wobbling around, don't worry ๐Ÿ˜‰ I just have no blood in my brain. It's actually totally safe as long as O don't hit my head passing out! Another reason my Neurologist is thinking it is not the Fludrocortizone. I'm not retaining fluid. So we will stop it for now anyways to be safe. It #FunFact Another option is, it could be from Estrogen treatments being stopped for treating my Endometrosis. But again that's not a concrete possibility... That's just me and neurology guessing (because that's the only thing that has changed in treatment.) I am back on medication to lower the blood pressure. But it is giving me such severe side effects we will now be switching to a different blood pressure/beta blocker. Because I have a high heart rate right now. (Heart rate has been in control for years with my current beta blocker, propanolol. Prior to that my bpm was an astounding 250. Going off a beta blocker is not really an option.) with Beta blocker to lower heart rate, it's still very elevated right now. I have now been sent to cardiology for further evaluation. We all know it likely will not be a picknic and we likely won't come up with answers. But we have to start looking for what is wrong now or if I am having a issue or another cause outside of POTS. I do have a history of the lining of my heart being inflamed. This was temporary and resolved itself a few years back. Typically lupus patients have this happen. It could be related to the Sjรถgren's syndrome I have. Last week I refused to call doctors because, I was sure it was medicational. I wanted to just wanted give my body time to get off the Fludrocortizone and readjust. It did not readjust. Neurologists told me at 8 days I am rid of the medication and prior I was off of the Fludrocortizone for like a month and back then the blood pressure remained elevated. The old blood pressure medication made me depressed as a side effect. Not a very fun side effect. I think when it's the holiday season anyways and you're sick naturally you get down. So even though it wasn't the best idea, we went for a walk to the lake and got some fresh air and sunshine.
Because sometimes you just need to do what's good for your soul. And it was good for my soul for sure.  Life will be tough. Times will come when we do not want to do what we have to do. We will wonder "why me". We will inevitably miss our pre sick lifestyles. But take my advice and don't unpack and live there! We don't always know what's ahead. Trust in the Lord, he will always lead you home- Chelle                                                 P.S. If you could keep my very sweet friend's family in your prayers it would be greatly appreciated! Three of their 6 immediate family members have cancer (two children) and they need our prayers at this time! We know the power of prayers! Thx!  

Saturday, December 23, 2017

12:30am Chronic101-Holidays-Faith

It's currently 12:30am and I can not sleep. I have painsomnia that nothing is touching. Side effects of the Decaron I think and to top it off Endometriosis Chaos no one ever needs. My pain levels are through the chart essentially. Go me! I finished up my monthly IVIG infusion they switched me from gamaplex to Gammaked, which they say is suppose to be very close. This was due to a national shortage of Gamaplex. So everyone had to make the switch. (Literally the second my body adapted to the gamaplex they had to switch me up.) But let me tell you there was a difference to my body between the two and it made me sick. I am doing better tonight luckily with those IVIG side effects. My health is a definite struggle all around right now. It's like playing Wack-a-mole and I'm totally loosing. Badly. I can't keep up with myself. Some days are better than others but things simply are not lining back out or other new things pop up. It's funny how a person can deal with so much crazy health issues before they start to become defeating. I am always pretty positive and handle these things well, but sometimes (like all the chronically ill)... It builds up and wears a person down naturally. So we have to deal with the stress living with chronic hardships bring.  The Holidays never help a flare up as well. I simply don't have the energy or feel well enough to do what I want to do every year. I'm sure the other's can fully relate. I have basically spent the week in bed. So when my mind is buzzing all night, my brain is full of worry, and my heart is a bit defeated, I grab my scriptures. And I happened to open to a highlighted 'sticky note' -D&C 6:19 "Be patient; be sober; be temperate; have patience, faith, hope, and charity." The second highlighted section D&C 6:34 "Therefor, fear not, little flock; do good; let earth and hell combine against you, for if ye are built upon my rock, they cannot prevail." When life and worry consumes you lean to the Savior and God will be there to catch you when you fall. He will ease your heavy burdens if you act upon him in faith. Let him help you through the hardships of life, when life gets too heavy for you to hold up. He will help carry you. Hang tough lovies! We will all survive the Holidays Chronically fabulously! Just do the best you can and try to relax and enjoy it. Definetly do not compare yourself to anyone else. I mean did the person you may be wanting to compare yourself with this week sit on the phone for hours fixing medical errors? Did they have infusions for days? Did they have the countless "medical chores" you have? Did they set up a mini house hospital? Did they suffer from insomnia every single night this month? Did their symptoms worsen for no apparent reason? (Insert your medical caregiving struggle/work/energy-consumer here.) Doubtley so. We may be busy in other ways but we are still busy trying to keep these bodies going. And those ways are typically invisible to others and they are different lifestyles. That's okay. Embrace your weird A.K.A differences. Put your body first,  keep pushing forwards, Love yourself & have a Merry Christmas ❤️ love -Chelle 

Friday, December 15, 2017

Dysautonomia Life Dec. 2017

I just saw my neurologist today. It has been confirmed my scary high blood pressure was from the massive pain I was in. The pain was in fact a Dysatuonomia flare. This disease is so hideous and mean! Good news is my blood pressure is slightly low and I can start the process of weening off the medication to lower the blood pressure. I also get to go back on fludrocortizone a big treatment for my POTS. This week has been mentally rough for me. Last week they took me off a migraine preventative medication. I had literally every single side effect. It was literally giving me symptoms of Parkinson's disease and that was not fun.  It was holding me down. Neuro also didn't have a "No" response to seizure episodes. They could be seizures... But we simply don't know right now. So this week has been slow and steady attempts to rebuild my health again. My tummy is not being so well. I have vomited several times this week, including some lunch today hiding in the car at the neurologist's office parking lot. Hoping nobody noticed. I haven't done that in well over a years time. Which makes me nervous obviously. The migraine medication was an appetite stimulant. I was afraid once I came off of it after being in a big dysautonomia flare my neurological gastroparesis would be worse. But we seem to be looking up. So hoping tummy gets better too with some time. My IVIG Gamaplexin is on nation Backorder. So all across the country are having to switch. If insurance complies I will have my scheduled IVIG infusions before Christmas (praying they do not make me sick. The last time I had infusions, they made me better and broke my cycle of misery... BUT changing brands can cause some issues.) I have been so frusterated with my body. Last night I prayed and then I opened Facebook to find this, 
 Not one but two donors are matching 150k this year in research. My heart needed that after this scary, frusterating, out of nowhere, flare up. That's the name of autonomic dysfunction. It is a constant battle and then some days it is down right terrifying! Praying I can keep pain levels lowered and mast cell issues can improve (all autonomic dysfunction). There have been some ups lately... Despite a big hospitalization, being in so much pain my body actually snapped and had to be sedated Multipule times... Many ER and a virus a.k.a a Dysautobomia disaster, Multipule doctor visits... An oh so much more. I managed to get an A in my class! Little victories to me are huge and I am proud! I could have easily quit so many times but Ipushed  forwards instead in faith in God's plan. 
.... One day at a time -Chelle

Monday, November 27, 2017

Did IVIG help?

Question: Did the IVIG infusions break my migraine cycle of over three weeks? Answer: YES! ๐Ÿ™Œ. I did get a headache for a little while but i have been the most headache free I've been in weeks. It was the only thing that stopped any of it. I have had a headache free day! Eek! Now I am not totally feeling fine. I am still really weak and my POTS is revved up. Standing puts my heart rate through the roof so I'm like running a marathon no matter what I do.  But I am clearly doing much better. Now if we can just keep things going this way... Hopefully I will get back on my feet again and recover. I have to rebuild strength for sure. It takes me overnight it seems to loose months of hard work. Now my poor GI motility really needs to improve. Neurological Gastroparesis likes to change course with neurological condition that causes it. (Dysautonomia)...  (Plus in it's defense I ate crap food for two weeks on those massive steroids. Never in my life have I had huger like that! I was starving and thinking of my next meal in the middle of a meal ๐Ÿ˜†! The girl who doesn't eat. Ate. My poor tummy deserves to be upset at me. After all it is paralyzed and I ate foods I can't digest for two weeks straight. It is very flared. Oh crazy steroid side effects!) hoping my poor tummy goes down and quits hurting so severely. I am on mushy liquid diet.  Looks like a full liquid diet will be next. Just my update. I am so blessed and happy the IVIG clearly helped me. I don't know what this exactly means... But it means I have some form of a treatment that is not just masking symptoms... It is treating something that's wrong in my body. I have always felt like my immune system just runs rapid and starts attacking me. Since day one ten years ago basically I've said this. And here we are finding my cases could very well be caused my autoimmunity. Who would have thunk! The cool thing is IVIG builds the immune system up instead of pulling it down. Makin me stronger not weaker. Heal little body heal! Lots of love. Never loose hope & though you have faith may you believe in Heavenly Father's plan for you. May you realize the lessons in the journeys and find joy along the way. Even in the trenches there is peace and joy. Sometimes you have to look a lot harder than others. Have faith in God's plan -Chelle 

Saturday, November 25, 2017

IVIG- POTS Autoimmune

Wearing the good old "Bless this Mess" sweat shirt. It may be old but it is going to be worn until it can't be worn anymore lol. Sentimental and very fitting? Yes. 
Today is the last infusion of IVIG. I normally don't feel good and it is rough. But I've been so sick lately it's a good day. I think it definetly is helping. My head still hurts. But it doesn't seem to hurt for a little while in the mornings. (Which I will take.) and then it helps to have caffeine but that's being rough on my tummy. I am now not sleeping so hopefully they can help me with that. Rest is crucial. I got to do very light cardio yesterday for 15minutes after IVIG. I think that's an amazing sign. I couldn't even walk to the bathroom last week. My heart rate is high lately so POTS is very revved up right now. My joints aren't kicking up as severely now. I think the muscle spams were linked from the Decadron... Because I have to take Decadron with this IVIG for side effects and that has restarted. Mast cell rash is finally going away after weeks. So if anything the IVIG is helping my mast cell issues! Win! Though I am so far from being well right now. Life has very much 360d this past month and not only have I scared the crap out of my family. I have scared the crap out of myself this whole situation by far has been the biggest fright ever. (For all of us.) I have been very blessed through this and I just know without a doubt things will get better again and this too shall pass. I don't know that timeline. But I know God keeps his promises. I have 3 more months to see if this works for me. It doesn't kick in really for 6 months. But I do feel it made a difference yesterday. My body just feels better all over. Prayers and love to all -Chelle