Hello dear ones,
Today I write as a form of discipline rather than pleasure. This has been a rough week (as many are), but it’s been seriously preventing me from finding much pleasure in my daily life. For that reason, I haven’t written much. But in reality, I feel it might be most important for me to write in these circumstances.
I have mentioned that I have Crohn’s Disease on this here blog, but I have not yet written much about it. I frankly do not like to talk about it, much less write about it. But here we are.
I am seeing multiple doctors right now; my main one is a gastroenterologist. With her, we are working through starting me on a new medication because my current one is not working and is in fact doing me (particularly my liver) more harm than good. I also get blood work done regularly, and I find myself suddenly under the orders of having even more procedures done and others things that I’ll write more about when the time comes.
I see my gastroenterologist tomorrow to further discuss the new medication. This one, Remicade, is one that I’ve tried to avoid from day one. It is quite an awful drug. It’s an infusion, so I’d have to go to the hospital every two months to have it given to me through an IV. I would be on very serious medical-watch because it can have many severe, sometimes fatal, side-effects.
But then again, the meds that I’m on right now have severe side-effects as well, which is why I have blood work regularly done. I guess what I am trying to say is that I am scared about this.
I saw my primary doctor yesterday. My gastroenterologist sent me back to her to deal with all of the excess “sick stuff” that I deal with due to my auto-immune disease. The main topic of this appointment was my chronic (daily) severe headaches, and my occasional, volatile migraines. We also spoke about many other issues, which, for the time being, I’d rather not delve into detail about.
Currently, I am taking an uncomfortable amount of drugs. Since I’ve been diagnosed, I’ve spent so much time trying to avoid drugs, and I now find myself taking more than I ever would have wanted. The fact of the matter is, I was getting nowhere without the western doctors. I was doing too much of my own scheming and planning and avoiding western drugs, but all the while my Crohn’s was worsening. Not to mention the fact that Crohn’s can have very critical repercussions if it goes untreated. Cancer, rheumatoid arthritis, osteoporosis, blood clots/strokes, bowel obstructions, fistulas, etc.
So in a sense, I’ve kind of surrendered and turned myself over to the doctors as of late. I’m still doing a lot of thinking, learning, and worrying, but even so, I am now far more apt to comply with doctor’s orders.
I am so sick of dealing with pain every day. I am so sick of hurting. I hate how it hurts and I cry and that Adam wants to fix it and he can’t. It makes me feel so selfish. I’m sick of how I never feel good and my moods show it. I wish I could be better for Adam. Pain and fatigue are my constant companions, and I fear they will never give me a moment’s rest until I am in remission. And I may just need Remicade to get there.
And really, I must admit to how much it hurts my pride to answer the question that I hear particularly often, since I live in a new place with new people: “So what do you do, Diana? … Do you work? … What do you do during the day?”
I used to try and dodge the question or make light of myself. I’d laugh and say “Not much!” or “I’m hoping to start working towards my degree again soon.” I got so sick of beating around the bush, and honestly, answering that way got so old, and I just felt embarrassed. Now, I don’t skip a beat with my answer. I’m brutally honest. I’ve come to the point where I tell people immediately: “I have Crohn’s Disease, and I don’t have it under control yet. Doctor appointments take up a lot of my time. And I really don’t have energy to do much right now.”
You know what they say: honesty is the best policy.
Well, there you have it. I haven’t gone in to much detail, but I have at the very least urged myself to write a brief summary of my current situation. It’s quite all right if you have a question for me, and I’d be more than happy to answer.
For now, I do my best to pray ceaselessly.
O Lord Jesus Christ, our Saviour, Physician of souls and bodies, who
didst become man and suffer death on the Cross for our salvation, and
through thy tender love and compassion didst heal all manner of sickness
and affliction; do thou O Lord, visit me in my suffering, and grant me
grace and strength to bear this sickness with which I am afflicted, with
Christian patience and submission to thy will, trusting in thy loving
kindness and tender mercy. Bless, I pray thee, the means used for my
recovery, and those who administer them. I know O Lord, that I justly
deserve any punishment inflicted upon me for I have so often offended
thee and sinned against thee, in thought, word, and deed. Therefore, I
humbly pray thee, look upon my weakness, and deal not with me after my
sins, but according to the multitude of thy mercies. Have compassion on
me, and let mercy and justice meet; and deliver me from this sickness
and suffering I am undergoing. Grant that my sickness may be the means
of my true repentance and amendment of my life according to thy will,
that I may spend the rest of my days in thy love and fear: that my soul,
being helped by thy grace and sanctified by thy Holy Mysteries, may be
prepared for its passage to the Eternal Life, and there, in the company
of thy blessed Saints, may praise and glorify thee with thy Eternal
Father and Life-giving Spirit. Amen.
And I thank God for his holy, wonderworking saints, the unmercenary physicians, Saints Panteleimon, Cosmas, and Damian, and I ask them to pray to God for me and my soul and body.
Adam got me this icon of Saints Cosmas, Panteleimon, and Damian for Christmas. It is one of the greatest gifts I have ever received. It is so beautiful, and it has helped me to feel closer to these three saints than ever before. Icons are also called “windows into Heaven.” Humans are visual creatures, and even though the saints are always with us, having an icon which was painted (“written” is what it’s actually called) in reverance depicting the saints helps us to realize how near they are. Standing in front of icons are truly like taking a peak into Heaven. Glory to God for all things!
Wishing you all a happy Tuesday. And a blessed Clean Week to my Orthodox friends!