Depression is a part of chronic illness, it’s inevitable, some deal better than others with that fact but we all face this issue head on at some point. Today was simply just one of those horrific days for me. I was so confident I’d awaken refreshed and bright eyed ready for discharge since I’d gotten down a 6” Subway sandwich the night before, my only food in about 6 days maybe more. So when I awoke I was still quite starving and my mother graciously bought me a bacon egg and cheese sandwich from the hospital cafeteria and that’s when it all went sour.
I began vomiting profusely shortly after finishing the sandwich, I’d tried to eat slow but I was so famished I scarfed down the whole thing relatively fast. Every time I thought it was over more came up it was a never ending stream of undigested food and drink. Then to top it all off that set off a migraine and my vasculitis decided to flare up for me hooray(sarcasm). Even after taking a compazine suppository, reglan IV push, zofran IV, and ativan intensol I found no relief from my nausea even valium didn’t help to stop the cramping from all these vomiting episodes. I was baffled and so were ALL of the doctors who came in to see me, they were calling colleagues, looking at research papers, constantly making calls all in an effort to help me but to no avail.
I got so down on myself I was crying whilst vomiting into the basin in front of me as little specks of blood came up disturbing me even more. At this point I’d vomited so much my throat was quite raw and my voice extremely feeble. I didn’t want to be stuck here with no plan but at the same time I didn’t want to go home just to have to come back to the ER to be readmitted again. We all know an emergency room wait can take forever or so it seems. So being that I have a nice private room here I just cried and cried nothing was helping, not even the subcutaneous dilaudid shots which were meant to assist with my pain. I felt so helpless, like I was truly slowly dying on my way to being fed by a PICC line again which was a horrid experience, one I plan to avoid at all costs. Anyway after those thoughts about being kept alive by machinery I delved even further into this state of depression. My mother was having a hard time consoling me when I said “Mom I’m not suicidal, but I don’t want to live like this. Can we please consider the drive to Vermont for Death with Dignity?”
Needless to say this upset her but we spoke about it for a while. However my luck was soon to change my mother really let her fellow nurses here know that I was in a really bad place both physically and mentally. My blood pressure was 174/108 with a pulse of 132 if I do recall correctly, anyways it was quite high for someone already on verapamil. I didn’t know it but my mother had asked the head nurse if she could do something to cheer me up. Guess what she did? She brought my fantastic and lovable ball of fur named Loca to my room! Loca is a silky hair wheaten terrier! It felt amazing to have seen my loving dog after 5 long days without getting any kisses on the nose from her. So needless to say although I was still struggling to stay strong Loca made me smile a bit which is what we all need when in such a crappy situation.
Things continued to brighten up from there as once again my mother spoke to the head nurse here and soon I was seeing a new local rheumatologist and the palliative care team. Now palliative care seeks to treat symptoms for those with incurable illness and severe chronic illness. The two ladies were nurses but with PhD’s and a right to write orders for medication. I was amazed these women listened and understood me they had no problem at all giving me a far higher dose of painkillers, some different anti nausea meds to be given often every 2 hours(almost unheard of at that frequency), and lastly reassured me that they would not rest until they could help me with all of this agony. This was all a beacon of hope to me and I am actually looking forward to waking up at 6am to post this article. I haven’t had this much hope in a while but these women weren’t the only reason.
The rheumatologist was baffled by my case and the sheer amount of weight loss as well as pain that I’d endured. He heard about my visit to Johns Hopkins and like me felt the advice was unsatisfactory for such a high level vasculitis program. So he gladly said he’d contact all of my rheumatologists and get back to me on Monday about how to proceed. He would ultimately like to begin Rituxan as I was told by Dr Seo, but in addition he wants me on Imuran. Now this was a plan like the one’s I’d read about so often that worked for so many. I am most likely going to be getting that chemotherapy in the hospital on Monday and Tuesday. It’ll be exhausting about this I have no doubt but I’ll do anything for remission I mean just hours earlier I was contemplating a legal form of death for myself. Now what a change I actually felt far more confident!
I just wanted to share this story because even when you think you’re at the end of your rope there’s still some hope to be had! Just like everyone on my support team who called, sent texts, facebooked me, or sent a tweet I stayed strong as they’d asked me to. My friends were really there for me and it seems their prayers were answered. I am now hopeful that soon I will have some relief and that this hospital visit wasn’t a complete waste of my time. Well thank you all for reading and I hope this inspires you in your times of depression, wishing you all a pain free day and an optimistic outlook on life.