It’s been a while. I have been overwhelmed with the amount of support my family has received. Thank you so much for sharing tips, financial donations & thoughtful words. After my discharge from Wesley Long hospital, 2 days later I was admitted to UNC Medical Center Chapel Hill. There I had a GJ-tube place and Power Central Line. Prior to the placement of the GJ-tube, we did a trial run with an NJ-tube placement and Kate Farms Peptide 1.5 formula. We achieved our goal of no MCAS reaction and feed rate at 65ml/hr. I will expound on the reason for the GJ-Tube on another post. Stay tuned!
I was discharged after 13 days at UNC. The transition home hasn’t been easy. While the hospital came with it’s challenges, home life does as well. I am very happy to be united with my beautiful children. However, my increased need for care leaves me with little energy or time to care for them. I still have help from my more than amazing friends who have been covering childcare for both my kids from Monday- Friday.
Another challenge is getting used to administering my medications through my G-tube and running my feed. Trying to find my niche. We are influx at the moment. We are selling our home and moving to handicap accessible home. There will be more on why we sold in a YouTube vlog. I spend approximate 75% of my active time in a power wheelchair due to my unstable dysautonomia. I can not tolerate standing for more that 3- 5 minutes at a time. So we spent some time in a hotel until we found and an apartment. The the 4th day into our stay, the toilet overflowed and flooded the bathroom, closet and part of the bedroom. Then off to a hotel again for 2 days while the damage was repaired. Now we are back in our apartment, but we found that apartment living is not conducive to my health in this extremely reactive state that I am in. All of this movement did not help with establishing a routine of care, also it was exhausting not only for me, but my husband & children.
Contrary to what may seem logical my health did not improve before I was discharged from the hospital. My admission was to give me a successful intravenous access and alternative form of nutrition when I can’t eat. The stability of my symptoms will all happen at home. Oh I was started on a new medication regime. It was impossible to control my MCAS reactions at the hospital because I was exposed to many uncontrollable triggers such as personal body products of the staff, cleaning chemicals & stress. While admitted I did have medical help. At home, I am having trouble establishing home health care.
I know it will take some time to establish a routine. The good news is that we have found a home the suits our needs. Current health status is still unstable. I have developed a new reaction to a trigger. I am really not sure what the trigger is. I do have some leads. We have had to call 911 for help once. This reaction is fast and severe. My respiratory status becomes compromised within 30 seconds from the onset of exposure. I have never been scared that I will not make it through a reaction. With this new trigger, I am almost certain I will not survive it. I have never felt like that. The feeling of doom pours over me like a violent rain storm. I am not able take a break, my chest becomes tight & and it feels like my lungs are tied with a zip tie, no movement. My chest burns with sharp stabbing pain. The onset always starts with coughing that aggressively turns into vomiting mucus that can not pass through my esophagus. Oh, this one scares me. I’m not sure if the trigger is external from my environment in this new place or an internal trigger. I HAVE to find out WHAT it is. I am very afraid.
Great news! Due to everyone’s financial assistance, I was able to purchase a power wheelchair. I will share images soon. Really I do not need anything else now. Only to save up for a service dog. I think it will be very help with unknown triggers such as what I am dealing with. Again thank you for stopping by. Please check out some recipes.
07.29.22 Hospital Admission
n social media such as Instagram or YouTube you may know me as The Hungry Owl & Fit Flamingo. I was recently diagnosed with Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, & MCAS. Prior to my diagnosis 2 years ago, I suffered from fatigue associated with Adenomyosis, Fibromyalgia, & joint displacements. Please click the links to learn more about these conditions.
I was no more different from most people in general or so I thought. I continued to work for as long as could until the anaphylaxis and reactions became more frequent.
I enjoyed running, proudly completing 3 half marathons with my biggest fan, my hubby cheering me on. I just knew 1 day, I would run a full marathon. I enjoyed entertaining younger ones with kiddie themed house parties and organizing a formal evening every now and then. As auntie & uncle , we spent as much time as we could with nieces and nephews.
In my 30s, my health continued to decline after the birth of my son. I did not allow that to deter me from living an active meaningful life. I take my responsibility to make my community feel secure and offer 1:1 emotional & spiritual guidance based on God’s word. I was very happy to teach my son to make his commitment at a very young age– and he loved it.
After 5 years, I was overjoyed to learn I would be expecting my 2nd child. A girl! I was grateful.
History repeated itself and my second pregnancy was just as a debilitating pregnancy complicated by (hyperemesis gravidum ) vomiting , degenerative fibroid and a separation of my pubis symphysis. With physical limitations I couldn’t run again.
I don’t quit easily, despite multiple visits to the Emergency Department or doctors visits, No one could explain what was wrong . Eating healthy, exercising; during the lock down, I started a fitness class for my friends. Through YouTube videos, online courses .
In the past 2 years, I have had over 100 anaphylactic reactions, used approximately 60 EpiPens, I can no longer walk without assistance, my precious children have become accustomed to be ready to change our plans the moment mommy doesn’t feel good. I miss them dearly and just want to hold them.
I have been unable to take my mast celll stabilizers, and other medications regularly becaue I have severe nerve damage, dysautonomia and muscle disease that cause my mast cells to degranulate ad release mediators that cause me to go into anaphylaxis. Due to the freqent low oxygen in my brain, i have developed an unspecified neurological problem which leaves me unable to walk. My body is malnourished from weeks of not eating, so my muscles are wastimg away & cannot support my body to stand no longer than 5 minutes.
We recently discovered 2 lab confirmed pathogenic mold in our home which leads us to suspect the mold grately accelerated my health decline.
I have an mazing husband who cares for me like a bird protects her flock. He works tirelessly secularly & at home. When I am fighting for each breath I see his snyc with mine and forces each breath out. He cares for our children with joy. He has never complained! He stands up like a bull whenever a medical professional abuses their authority to discredit me as having psychosomatic. I don’t only love my husband. I LIKE him. If I were to fall asleep in death, I know I lacked nothing a wife could ever want. He adorned me with grace wherever we were.
I have been hospitalized for the past 18 days. I need a J-tube to eat & take my medications. My current community hospital feels they are not equipped to deal with a complex patient such as myself:
I am allergic to dozens of medications, hand sanitizer, adhesives, perfumes, hair products, propylene glycol, Polysorbate, all fruits, vegetables, meat except occasionally chicken, beef, car exhaust, hormones, emotional distress, latex change in barometric pressure, cold urticaria & certain color patterns.
I have an amazing immunologist Dr.Anne Maitland, along with Endocrinologist, Hepatologist, & Geneticist.
If You are physician or work in a hospital willing to take on my care to insert a j-tube to allow me to eat, please contact me on my Instagram account. @thehungryowl&fitflamingo