#hopebeyondhealing

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Starting a new medication can be hard. I started LDN a few days ago and it's regulating my immune system. Things are wonky right now because of it. But I know I just need to get past this part and good things will come. It's not uncommon to feel this way with this med at first. I won't give up. I am thankful my mast cells did not react to it at least! Here's to better days ahead! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube #ldn
My favorite season closely followed by Fall. It's a time of renewing, refreshing, and hope. Nature wakes up from her winter nap and the homestead comes to life. ❤️ Praying for a blessed spring as this winter was one of the worst I've ever had. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
I drove today! I am a little sore now where my feeding tube is, but it was worth it! I went to pick up groceries from Kroger's #clicklist . I even walked into the store to get stamps, too! It's another beautiful day here in the Midwest. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Yesterday was the first time I have been back in the kitchen to cook a meal since November. It is strange to cook and not be able to eat it. But my husband has to eat. I am glad I have some strength to get back in there after 4 mos even though it wears me out and can make me nauseous. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Lunch time! Well I should say meal time since I am on continuous feeds. Doing better at the 56 rate rather than the 70. I can still eat orally some so that makes up some of the missed calories. Favorites right now are baby food pears and lindt chocolate! As it stands with the rate I am on, I am getting 1300 calories. Have to watch my weight as I dropped a half pound yesterday. My body is still hashing this all out! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Guys! I have to document my good hair day! My hair recently has been falling out, breaking, and just been pretty awful from malnutrition. It's getting better! It's been hard trying to figure out my feeding tube formula to where I tolerate it. But, what my body HAS been able to absorb is helping. Trying something different with my rate and supplementing iron and b12 right now. If it doesn't work, I'll have to find another formula. 😞 But, hoping I won't have to. 💪🏻 Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
A letter to myself, too. Gastroparesis is the hardest thing I have had to deal with. No one quite can understand the turmoil it causes on a daily basis. It's literally unbelievable. But, it can't win. It has to be fought every day. No breaks. That can only be done with God's help or you would completely lose your mind. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
I've struggled a lot with fear and discouragement these past few months. I felt myself slipping away and start to give up. It's a scary thing when you are too sick and exhausted to fight. But, God has refreshed my soul and I am ready to continue this fight. I am ready to be brave. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Got a shower in! It took every last bit of strength I had, but I feel better. Stoma is very sore still, stinging and burning. I didn't sleep well last night and will be resting a lot today. It's a windy, dreary day so a good day for that. And I can hear my beloved frogs singing away. Maybe I will post a video later so you can hear, too. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Warning bloated tummy pic. Keeping it real. This type of feeding tube is a whole new experience. It is a JPEG. Remembering when to clamp and unclamp, getting it taped down proper, trying not to bump it with my arms, etc is hard. I am still having spasms at the site. I am sure it's due to cutting through muscle and nerve to make the stoma. The stitches also hurt. My body started going down hill again after being off feeds. Blood work was off and I lost more weight. But, I am hooked back up and taking it slow again until my goal rate is reached. Thank you all for the prayers. They are much appreciated! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
Wow. Holy smokes. This was hands down THE most painful procedure (PEJ) I've ever had! I'm allergic to a lot of medicine including a few narcotics and they were afraid to give me anything before I woke up. Needless to say I woke up moaning and yelling (A bit unknown to me at first) They finally gave me some toradol, but it was too late. The pain was unbearable. I have a ton of spasms under my ribs that take my breath away. It's from the air they used during the procedure. I also got some Tylenol 3, but had to take it orally since it doesn't come in IV. It took 1 hour and 45 min to take the edge off 😟 I am trying to rest in the hospital overnight. Thank you all for your prayers! PLEASE continue. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #njtube #feedingtube
Today is the last day for this tube to take up space in my nose and throat! So glad! It has been a difficult experience. I am thankful to be getting nutrition though. And equally thankful to be getting new abdominal tube tomorrow morning. Prayers appreciated for a smooth transition and procedure. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #njtube #feedingtube
Rough night. A feeding tube doesn't fix everything. I still have issues I've been having, but the upside is that I am at least getting nutrition in spite of all the symptoms. I would not be getting any nourishment without this tube due to my gastroparesis issues. My tube though is causing a lot of pain in my nose and throat still. The inside of my nose is swollen and sore. My blood pressure is running low today and I'm tired. Monday I get this OUT and get a new one put in my abdomen. I will be glad not to have to share my nostril with a stiff tube! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #njtube #feedingtube
Got my packs modified with a grommet and ready for my feeding tube change. Since this one will be lower and not high like my NJ, I made it to where the tubing can come out of the bottom instead of top. The blue pack is my new pack for hiking and canoeing which I am determined to be able to do again! Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #njtube #feedingtube
My energy level today is low. I am super tired again today. I managed to get some blood work done and swept off the porch. Now I'm ready for a nap! I never used to nap, but now I need it. It's rainy here today so I'm sure that's not helping 😊☔ But, at least I get to cozy up and listen to the thunder. Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #hopebeyondhealing #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #mg #chronicwarrior #spoonie #spoonielife #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #njtube #feedingtube
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