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