My Crazy Week: A Vent Post

91cd7b04-ce99-4660-8079-86d3d332ed2eI need to vent.  Can I vent here?  I’m going to vent and if that bothers you, scroll on past this post…  After almost a month without bladder pain that lead me to suspect that my interstitial cystitis went into remission, my flare came back with a vengeance and I am beyond upset about it.  I was starting to have some hope after just a short period of time without any major bladder pain.  I was eating and drinking all of the things that you’re not supposed to have with this disease and nothing was affecting me badly.  I honestly thought that I was going into remission.  I had even considered canceling my cystoscopy with hydrodistention since I wasn’t having the usual pains.  Boy, am I glad that I didn’t cancel the procedure!  Now I just have to hope and pray that this procedure actually helps my pain and puts this terribly painful disease into remission.  I have spoken to a few women who have been helped by it, so I’m hopeful that it will also work for me.  

504de6d8-9b1b-4d28-83f7-1fda475dd00fMy rheumatologist has increased my immune suppressant drug to the maximum dosage allowed, with the hopes that this will help reduce some of my scleroderma symptoms.  I’ve been on this medication for years, but the week that my doctor increased it is the week that my pharmacy switched to a new manufacturer for Plaquenil and it has made me sick as a dog all week long!  I typically have a very strong stomach and can take many different medications on an empty stomach with almost no trouble, but I can no longer say that about Plaquenil.  I have managed to keep taking it through all of the sickness simply because I don’t like the idea of moving on to one of the other immune suppressant options yet.  I know that it will be necessary eventually; I’m just not ready for it at this time.

abb49236-33c7-45b1-b90d-e6d5c0ef2498I have an appointment with my primary care physician tomorrow and I’m honestly looking forward to it.  This is my favorite doctor to go to.  She’s the one that takes care of all of my medical needs, medications, referrals, etc.  I’ve been with her for over a year now, which has never happened with me before.  I usually move far too often or avoid doctors altogether, but now that I’m sick forever that’s no longer an option.  I’m going to be asking her to give me a referral to a different gynecologist.  I want a second opinion regarding the possibility of endometriosis or adhesions.  I don’t think that I should accept chronic pain and pain killers as my only future.  Certainly there is a doctor somewhere that will cut into me and fix the damn problem!  I’m also going to find out how and to whom I can make a formal complaint for the way that I was treated by her.  The things that she said and the way that she said them to me was not professional and I refuse to accept this type of behavior from anybody, but especially from a doctor!  In case you don’t know what I’m talking about, you can read all about it in my last post, Waiting to Die.  


My medical anxiety is starting to get all worked up over a few appointments that are coming up in the next couple of weeks.  I have two separate procedures that require anesthesia, so that’s always a little scary for me.  My autoimmune life is really putting me through the wringer this year.  I’m finally getting an upper endoscopy, or EGD done on Wednesday.  They are planning to stretch my esophagus so that I can (hopefully) eat like a “normal” person again.  I’ve been choking and gagging on my food for awhile now, and it’s lead to quite a bit of weight loss this year.  I’ve lost over 60 pounds so far and it’s still coming off, although it seems to be slowing down now – thank Gods!  

db8fdf24-480b-48f0-b0fd-591fc96d027dAs you can see from my little rant here, I’ve really got a lot going on in my world.  In addition to all of this, I have the usual stresses that everyone does.  I’m raising teenage boys, one of whom is special needs and brings his own set of obstacles.  My family has been in a housing crisis this year and I’m still dealing with the finite details of that situation.  My husband works very hard for our family, but we still struggle to keep our bills all paid.  This last year or so has been really tough on the whole world, and I am no exception.  Luckily, this last week we did receive good news of a financial nature, and my stress is just a little bit lower now.  If you are a person who prays, please keep me in your mind and on your heart.  I could use all of the love and light that y’all could muster up for me.  

f786e344-5e13-46d0-b4a8-a8912b224034Through all of the darkness that I am currently enduring, the chronic pain, fatigue and depression, there is one constant in my life that pulls me through… my husband, my partner, my best friend, my caregiver, my everything… Michael.  I have been through so much lately and there is so much more to come.  This man does literally everything for me.  He goes to work long hours and comes home to help me cook and clean, and by “help me” I mean that he does it for me.  He works his butt off inside and outside of our home, takes me back and forth to all of my appointments (he never misses one), offers emotional support 100% of the time, deals with my craziness and never fails me.  Most of my friends are in awe of the type of marriage that we have.  All of my spoonie friends wish for a man like mine that actually supports his sick wife.  They don’t make men like mine anymore, and I will be the first one to admit just how blessed I am.  


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