Where have I been this past month you ask? Well if you must know, mainly in bed. Why? Glad you asked because I have a lot to share.
Let's start with my first Remicade infusion. I'll start with the good news about it-I didn't keel over during it or end up in the ER. Awesome, right? Maybe...unfortunately since then I've been very bad off. Not sure if it threw me into a flare up or if I had a reaction that only happens to 1-8% of people who use the medication. That reaction is pain in the joints. I tend to have the reactions to medications that are in the small percent of people having it. Lucky me. Since the infusion I've had horrible knee and elbow pain, the worst I can recall having ever. No joke. Not to mention my fatigue has been sky high. I will be talking with my doctor next week to see what her thoughts are before I proceed with my next infusion. I feel the need to tell you about my time during the infusion because I don't often feel like killing people or telling them to shut the hell up but during my infusion I was not having a good day due to a major occipital headache. About a half hour in (it's a two hour infusion for those of you who do not know) a lady comes in for her infusion. She is happily talking with the nurse and telling the nurse how great she feels and how since she started her infusion she can exercise again. Then she felt the need to comment on her low BP and mine was high that day due to the headache. She got to take her cuff off while I had to keep mine on the entire time. Unfortunately she continued on and on about how great life was and I wanted to puke. In fact, I thought about doing it so either she or I left the room. I was seconds away from telling her to shut it because when you say how great your life is over and over, it only means one thing- that it isn't. All I can say is thank god her infusion was only about 30 minutes because I would've had to ask to be moved. Then I would look like an ass. Maybe you think I'm being an ass. The reason I tell this story is so you can understand what it's like when you feel like complete shit from the Behcet's and you deal with a situation like this where you are trapped and want to scream but can't because then you look like the ass. I have had this happen at home- when I have a headache or feel like crap- I've had to lock myself in my room so I don't snap at my family. There are many others who deal with this as well. Sometimes we have this for days in a row, such as in a flare up. Other times it's just for a day here and there. My point being, we have chronic pain and can't always be chipper. So if you happen to catch us on a bad day, cut us some slack.
Next up is my cystoscopy. This procedure is suppose to be an easy thing. For me, it wasn't. The doctor was very nice who performed it, thankfully. He explained well and I was able to watch on the TV. For those of you who don't know what a cystoscopy is, they take a catheter that has a camera on the end and put it up into your bladder. Your bladder fills with a saline to expand it so they can see everything better. They are looking for abnormalities. The catheter itself was fine. It was the filling of my bladder that killed. You have to hold it in until they are done, which takes no longer than a minute or two. My body does not tolerate any kind of invasive procedure well. Short history here for you. I once had an IUD placed and ended up in the ER less than an hour later needing it to be removed due to pain. I almost passed out as it was so painful. No joke. I once had a lapraoscopy in November 2005 and didn't fully recover until February 2006. Yep, not joking again. I was very sick for those couple months. My bladder was not happy with the cystoscopy. On the way home we had to stop at bathrooms every 5 minutes due to pain and feeling like I need to urinate, which I really didn't. Maybe a dribble came out if I was lucky. Poor Sue, thankfully she was a trooper driving me. I told her what I wouldn't give to just be wearing a depends on the ride home! yea, I'm serious. Then the fun part of getting home is having blood either in your urine or on the toilet paper for the next day. I actually had to pull out my heat pad to help with the bladder pain. It was that bad. I hear from others it is not like this for most people. Apparently I'm just one of the lucky ones again. It took me 3 days before I felt normal again. The worst part was needing to have the urodynamic testing done the following week which is similar to the cystoscopy- NO!!!!!!!!!!!!!
So I was dreading the urodynamic testing but can you blame me? However, I needed to do it to find out what the problem is. This test was very interesting. You may or may not want to stop reading here. I go into details- you've been warned. First, you will be showing your bottom half to the nurses and provider so beware for those of you who are shy. You get hooked up to EMG stickers hooked up to your rectal area to monitor your muscles since they are involved with your urine. Then you get a catheter in your rectum and bladder. Don't worry, those aren't painful as long as they use enough jelly. You also have two tubes hooked up to your legs which are the tubes to fill your bladder with saline. You start by urinating your full bladder into a commode which has a beaker beneath it on the floor and that is hooked up to some cords that measure your amount, stream, and stuff like that. Then they have the provider come in and they start the infusion of saline into your bladder. I did not make through more than the first test for this as it was too painful. From what I gathered it sounds like they start with a small amount, then infuse more until they reach a specific number. During this they ask for you to tell them when you have the sensation to urinate- when would you look for a bathroom, when would you be running someone down to get to the bathroom and things like that. I started getting pain so we ended it there. In fact, it was painful enough to bring tears to my eyes. Then you urinate the remaining amount in the commode again. I met with the provider, Jill Freeman, afterwards to discuss results. We found out I have a very small bladder, which I already knew. I can hold about 4 shot glasses worth before I need to go. Regarding the pain, that is not normal. She said she's had two people who've had problems like that before-one who had a pelvic floor dysfunction and one they were unable to explain why she has the pain. So I'm unique once again. Yay for me! Other than that, I didn't have problems starting a stream that day, which it doesn't happen every day- only off and on every couple months. Because I could only urinate smaller amounts they were not able to assess my flow like they normally would. Where does that leave me then? We are going to try a medication called Oxybutynin to see if that relieves the frequency. If it doesn't, then she will diagnose me with interstitial cystitis. I can't recall why she treats people this way, BD brain today, but it made sense when she was explaining it. So that's where I'm at with the urinary things. I don't want to think bad but have a feeling I will be diagnosed with interstitial cystitis. Guess we'll see what happens;)
I've unfortunately had to change to a different pain med, Oxycontin, due to my pain being the worst it's ever been and no signs of letting up. I hate taking medications so I'll just stop there because I think I've complained enough on here tonight.
I've been dealing with a lovely thing called BPPV, or benign paroxysmal positional vertigo. Say that 10 times fast, I dare ya:) I've had it happen twice since August 24th. Waiting to hear from my neuro if she can treat it or if I need to see ENT. I would never wish this on anyone, not even the annoying lady at my Remicade infusion! It's a horrible spinning sensation when moving or laying down. Laying down is the worst. I have to sit up in attempt to tolerate it. It affects my eyes as well. I get nauseated and ear pain. Look it up if you don't know what it is, it's pretty interesting. The Epley maneuver really helped me thankfully. BTW, do you know how difficult it is to try to read how to do the Epley maneuver when you have nystagmus? Very. The next day after is pure hell- temporal headaches on both sides, numbness/tingling in face, and a general feeling like shit. Almost like you have the flu but don't. I will be happy when I never get this again.
What else has been going on? That's about it. I have my pain clinic appointment next week. I'm sure I'll have plenty to say after that. Hopefully it will go good. I'm crossing my fingers. Hope everyone is well! Good night!
I love the quote below. It cracks me up every time. Haven't decided which of the two I fall under:)
"Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad."~Norm Papernick
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