IV meds, they work!!! all the emotions that took over me the last visit!

 I haven't updated recently and I want to catch everyone who may not be on my facebook up! 

My last admission was rough on my physically and even more so emotionally which I think made dealing with the physical stuff harder. I was in tears a few times which is never good because then you get the, are you stressed talk from the doctors like that is the cause of everything...... 

Thing is I was on the medications or have been on the combo of meds that should have made me better... I was supposed to be better yet my blood cortisol was still virtually undetectable! my GI thought it was an absorption issue but he couldn't convince the endocrinologists at memorial to keep me on iv steroids because most people don't need that. Well guess what if you google iv Hydrocortif and Adrenal insufficiency you can find so many that need this treatment to feel normal and you can find so many on the pill form that cant not function. The Endos at memorial were okay with leaving me a 34 year old woman barely able to walk without my heart rate jumping to the 150's and unable to eat. 

I was admitted to UCI with a heart rate that high, bad chest pain when breathing, heaviness all over my body, throat swelling, and stomach pain about 4 days after being released from memorial. How does that happen??? At this point I barely trust medical staff because half the time I have left the hospital feeling worse than I come in and I felt like I was being discharged because they couldn't figure out what was wrong and testing can be difficult and take longer because of my allergies! 

So back to this past admission, the silver lining was that my husband could stay with me in the er for the first time this summer! I also found out later I could have 1 visitor per day which helped alot! It's been so lonely dealing with all these long admissions and health issues alone! when you get really sick you need someone to help advocate for you!  So the ER doctor says hey your body is a hot mess basically and we would like to admit you to the monitored floor and do XYZ....

New feeding tube(jgtube), this one has been causing throat pain/ swelling and nasal pain and have already been in 4.5 weeks at this point ( max life should be 6 weeks) and lets have endo readjust your medications again and see cardiology if needed, your heartrate is too high. Also lets do more ct scans, ultrasounds to look for blood clots because your heartrate is too high and you have been bedbound. Plus lots of labs because the first set of labs were wonky.

Most people with adrenal insufficiency have high potassium with a crisis yet mine is super low despite being given it iv and having tube feeds which points to me having some sort of malabsorption, yet none of the biopies show why I am having it. thankfully that and the recommendation from my gi at millers and my history was all my endo team needed to try iv steroids a try. 

Now here comes the emotions..... for three days I was npo ( no tube feeds/ nothing by mouth while the steroids were making be feel better and hungry and emotional I was on high doses to start 100mg ever 12 hours the 50mg every 12 ect) and told I was getting a test and then getting  Gtube with J tube extension. Also my youngest kid was not being good at home and throwing fits left and right as well as starting to get sick ( mcas allergish issues not covid) so that added to my stress and need to get out. Everything kept being delayed. Then they tell me they have good news, I don't have MCAS because my Tryptase is low( click here for more info on mcas and tryptase).... HAHAHA those that know will laugh and for those that don't just know its common to have MCAS and have a low tryptase! Then they tell me one test isn't allowed inpatient that is why it kept getting canceled and that they want me to try a drug my primary wasn't wanting me on because of possible side effects. they ordered the drug without telling me. Also 2 times over the 3 days my steroid order expired and I was given doses late after telling the nurse to page the doctor because it would be a mistake to not have my doses and no they were not just done with the steroids. After the doctors left I was in tears and overwhelmed by so many emotions. 

Anger... I felt like I was just being kept there but nothing was being done, 

Exhaustion.. I was woken every 4 hours for vitals and couldn't even shower because I wasn't allowed off the heart monitor.

Scared.. I already caught mistakes and with my condition plus the mcas mistakes can be deadly or set me back healthwise very quickly! 

Urgency.. I knew my youngest was heading for a melt down and needed his mom before he had a melt down and I needed to get better so I could be there for him. 

Lonely... I have spent half the summer and fall sick and in the hopsital alone for the most part. I am a social person I used to work 40 to 50 hours a week and be around people I do not thrive on being alone. I miss my students and coworkers enough as it is. taking my family away as well was too much.

Am I crazy??? Doctors began asking about my stress level since this all started with a miscarriage and maybe I am too sad to eat..... No I am not too sad to eat I am stressed at how this illness has taken time, so much money in lost income/ medical costs, and causes pain. not to mention if I was going to get anything from stress I think my son being in the icu would have caused it last year! OH also there is the fact I have abnormal test results that point to there being actual physical issues... 

God why? This has been a question I have struggle with and people tell me He won't give me more than I can handle.... Well Hey God please think less of me!!! I think and feel that God wants me to share this journey because there are other out there that feel alone and I hope I reach some of them! I have been posting alot about this journey and mostly having it being positive and I posted a low moment a few weeks ago and had a family member attack and say I needed to get over myself because I am not the only one in the world suffering and said I didn't need to be hospitalized so much. OMG Yes I think if my care was handled better or someone thought to run my cortisol sooner I wouldn't have had to but a person doesn't get hospitalized for no reason. Also a person shouldn't be shamed for sharing. Sorry it isn't pretty but that is the reason I share. I felt alone and I felt better when finding others with shared experiences so of course I would share mine with other. If you don't like it feel free to ignore! 

After I collected myself I asked the nurse to let the doctors know I wanted to leave. The GI team came right away and explained why they wanted me on the medication and how when it was tried before I was in adrenal crisis so they think that is why it didn't work and no they as GI didn't think it was stress ( that was the hospitalist) because my tests show I have gastroparesis but they didn't want to put in a tube without giving this medication which can have horrible side effects when on for years  try first. they wanted me to try it in the hospital but agreed to let me go if i promised to follow up the following week and come back if I get worse. 

It felt amazing to have them understand why I was feeling the way I did and agree to let me go.I was afraid it would be do it the way the want or sign out AMA.

NOW for the GOOD NEWS!!! The new medication and iv steroids are WORKING!!!

I started being able to eat small amounts last week a day after being released and have not used a tube feed in 4 days! My doctors have me counting calories ( I gained 3 pounds, which is good! ) and if I cant maintain or gain a little the nj tube will be removed in the next few weeks!