Self-Pity: pity for oneself, especially a self-indulgent attitude concerning one's own difficulties, hardships, etc.
Oh the self-pity days...where would I be without them?
Today, along with a couple other days, have been self-pity days lately. Why? Because we sometimes just have to have them when living with this disease. There's no easy way around it. Other don't always understand. Fellow BD'ers do.
What have I been thinking about today? The days where I have to do something and I'm not feeling well enough and don't want to take my walker but have to. The days of walker use have been becoming more and more frequent. Sad but true. How does that make me feel as a 33 year old? Not too great. Mixed emotions. Angry. Sad. Frustrated. Disappointed. All of the above and more. Some days I think I'm getting use to it but then realize I am not. Some days I wonder if that will ever happen? What's the hardest about it? Dealing with the people who's mothers never taught them not to stare at people. Yep, they are out there. Some days there are very many of them. Other days, it's not a problem. Some days I feel like attaching a note on my walker in very small writing that says something along the lines of "Come a little closer so you can get a better look with the words fuck you written in small letter." For those of you who know me, you know this very well may happen some day:) Some days I wonder if they are staring at my gorgeous body, ha ha;) Now you are asking why do I need the walker? For two main reasons: I need the support (a cane will not support me enough) and fatigue (for when I need to sit down and there is no where to sit). Some days when we have to go shopping, the cart is enough for me. We always have my walker in Sue's trunk now for me (and if you're thinking of coming over and stealing it, well...you go right ahead:))
The other self-pity: the mouth ulcers. Oh how I hate these bastards some days. I've been getting them on my tongue lately. However this week my little buddies have planted themselves right under my front teeth on the gum. These ones hurt more than the tongue and like a bastard as I have properly named them. Not too mention the inflammation of the blood vessels in my mouth currently. Oh and let's not forget the lesions on my chest. Thank god tank top season is over.
What else can I possibly complain about? Wouldn't you like to know...the usual pain has been worse. I only have myself to blame for that one since I had two family get-togethers this past weekend. Could I have got out of them? Not a chance on one and highly unlikely for the other. Some things you cannot miss, like my mother-in-laws 50th birthday, which Jason and I paid for. Even though this and the other event were 2 hours long (give or take) and I was able to sit at both. However, they sucked any life left right out of me. Since then? I've been in bed.
The worse part of this weekend coming up? We are suppose to be going to the Renaissance Festival. Of course this all depends on how I feel. Currently it isn't happening but there's hope of me recovering to normal feeling like crap (Kala, that's for you, ha ha:))You know what's bad? When we decide, and I mean me, to bring Jason's nephew, Ryder, who is in a stroller so I can hold on to the stroller for support instead of having to bring the walker. Some days it's easier to explain a stroller than it is a walker. It's just the way it is some days. You may think I'm being over sensitive to what others think but some days I just get sick of having to explain and get sick of people staring. There's hope some day I will get use to it. Or better yet, hope of never having to use it again someday. Or people actually listening to their mothers when they tell them not to stare at others. And btw, it has gotten a little easier than the first time I used it.
The lovely dizziness made a small come back last night. Damn BPPV. I was smart this time and did the Epley maneuver immediately and it wasn't as bad. In two weeks I see my neuro so I will be discussing it with her.
I'm going to stop the self pity for tonight. Hope you all enjoyed the party. Now you can't ever say I didn't invite you to anything:)
“We may encounter many defeats but we must not be defeated.”~ Maya Angelou
Thursday, September 20, 2012
Thursday, September 13, 2012
Problems with Pain Clinics...and Not Having Health Insurance
This post is about the problems with pain clinics and health care. I feel the need to share my story about my experience with my first pain clinic I went to back in 2007 so you can understand why I was afraid to go to another pain clinic.
It was a dark dreary day on May 7, 2007... ha ha, joking! Seriously though...Let's start with why I went there to begin with. I had a lapraoscopy back in November 2005 for what I learned after surgery was a pelvic adhesion and endometriosis. The back of my uterus is attached to my small intestine to be specific. Sounds like fun, right? Well it's not even close to fun when it's painful. During the surgery they cut the adhesion and in my follow up visit the doctor told me it may come back 10 years down the road or it may not. Guess who made a come back July 30th, 2007? Wonder how I can recall that date? The pain was so sudden and so severe I thought it was my appendix about to burst. My appendix? Yea, that's the location of the adhesion, so I'm probably going to be really screwed if I ever have problems with my appendix as I won't be able to tell if the pain is from the appendix or adhesion.
So I decided to go to a pain clinic on my own free will. I thought perhaps they would be able to do something for me. I made an appointment to MAPS in Coon Rapids, MN. I initially requested a female providers. I feel more comfortable with female providers. They understand female health issues and it's been proven they listen to female patients better than male providers do. The first available appointment for the female doctor was 3 months out. I decided to suck it up and make an appointment with a male doctor. I check in and the front desk says "You know your appointment today is with a male doctor, right?" I'm like yea, I made the appointment. Duh. The nurse brings me back and says "Your seeing a male doctor today." At this point I realize they made a note on my chart that I requested a female doctor. Why would they do this? I'm not sure. When the doctor comes in the room he doesn't say hi, hello, nice to meet you. His first words to me are "I can't exactly get a sex change, can I? I don't think my wife would like that." Even after that, I still didn't get a hi, hello, etc. I was flabbergasted. I was speechless (that doesn't happen often for those who know me). Needless to say the rest of the visit went downhill from there. I left there feeling like the lowest piece of shit, like a drug seeker, like I wasn't good enough to be treated with respect. I went to my car and cried. I kept thinking why would anyone want to go to this clinic? Why should anyone be treated this way? I never went back. I also decided at that moment when I got my nursing license I would NEVER treat a patient that way. That doctors name by the way? Dr. Thomas Cohn.
Think I'm being mean, rude, etc? Then may you have an experience like mine. Walk a mile in someone's shoes...
Since this Behcet's thing doesn't appear to be going away anytime soon, it was off to another pain clinic- United Pain Clinic. I tried my best to keep an open mind and not lump this pain clinic into the category of the other one, a.k.a. shitty pain clinic. Now, if I had written this on Tuesday, I'd have nothing but nice things to say. I brought my mother-in-law, Sue, with to the appointment for three reasons. 1) for support 2) to help me remember what they say 3) to have a witness in fear of them trying to pull some shit. I saw Dr. Sena Kihtir. The visit went well, she even knew what Behcet's was as she is from Turkey. She hasn't treated anyone for Behcet's since she lived in Turkey, but it was nice not having to explain what Behcet's is. The treatments we are going to do are Botox injections for my headaches, aqua therapy, biofeedback therapy, and adding Lyrica and Piroxicam to my meds. She asked me if she was going to be managing my meds or if my PCP was. I said I didn't know as we didn't talk about it. The next day I sent a message to my PCP and since I'm getting into meds she is not familiar with, she'd prefer they manage it, so she forwarded it on to Dr. Kihtir. I get a call about 3 PM yesterday, who I thought was the nurse but now realized it was Dr. Kihtir, stating I have to do a drug test and bring in my medications to her before she will prescribe them. Here's the problem with this. I do not have insurance and it would cost me $500 dollars to have this drug test done. Yes,$500! Now, I don't know about you but how many of you can afford this? Especially when you are out on disability. Trying to make ends meet when you're on disability is NOT easy. I said to her "I cannot afford $500 right now." Her response: "That doesn't matter. In order for me to prescribe them, you need to do a drug test." Guess what, it matters to me! She said she was going to send a message back to my PCP and I said "So am I." So I'm going to back track to Tuesday to tell you more specifics of my office visit with Dr. Kihtir. While I was being roomed by the CMA, I told her I cannot afford to pay the $500 but will be more than willing to do the test once I can get MN Care (hopefully November 1st). Why November 1st? In order to qualify you have to be without insurance for 4 months. Think we don't need health care reform? May you be placed in my position right now and see how well you manage with a chronic illness that requires anywhere from 3-15 visits a month to doctors. OK, I'm getting away from the visit. The CMA made it sound like it wouldn't be a problem. She even had me sign a narc contract. What is the point of the contract if they aren't prescribing me meds right? I can't think of a reason. As of yesterday it's not in my chart, but I have my copy at home. Then let's discuss the fact that Dr. Kihtir said I need to bring my medications down for her to see. I offered for her to see them at the visit Tuesday and she didn't seem interested at all. In fact, she didn't even respond when I offered them for her to see. And yes, she heard me because Sue heard me across the room. I am happy I had my mother-in-law with as she can back up my story about how things happened. In fact, her words to me yesterday were "I was under the impression it wasn't a big deal and you could do the test when you have insurance. They made it sound like it was no big deal." Thankfully my PCP is continuing my meds until I can get insurance.
So what next? Well I'm not one to stay quiet about things. Especially when it comes to the company I work for. Since I have had this experience, I have decided to write one of the higher ups in the company hoping he can help me and others who are in my position. What's my position? Backed into a corner until I can get insurance through the state. I have Allina Partners Care, however, they do not cover this drug test. I was going to go to Allina's Penny George Institute, which is an alternative healing place, but they do not take the Allina Partners Care. With the big stink about narcotics now-a-days (and yes I understand why), you think they would want people to go to any place they might benefit from to cut down on narcotic use. I am very disappointed that Allina Partners Care doesn't cover these options. What about the people who do not have a PCP who cares about their patients? And yes, they are out there.
Have I mentioned that stress triggers flare ups in BD? How many people get stressed over these types of problems? Many of us do. Unfortunately we get backed into a corner more often than you realize. What am I hoping will happen with the letter I'm writing? I'm hoping to help patients down the road. I don't think the policy will change anytime soon as everything has to go through numerous people/committees before a final approval will even happen. I hope this inspires more people to write their clinics about what needs to change. If nobody talks about it, how do we expect things to change? My motto is: If you are going to bitch about it, do something about it.
The quote below is one of my favorite quotes ever. You want the world to change, step up. You want people to change, step up.
"Be the change you want to see in the world." ~Mahatma Gandhi
It was a dark dreary day on May 7, 2007... ha ha, joking! Seriously though...Let's start with why I went there to begin with. I had a lapraoscopy back in November 2005 for what I learned after surgery was a pelvic adhesion and endometriosis. The back of my uterus is attached to my small intestine to be specific. Sounds like fun, right? Well it's not even close to fun when it's painful. During the surgery they cut the adhesion and in my follow up visit the doctor told me it may come back 10 years down the road or it may not. Guess who made a come back July 30th, 2007? Wonder how I can recall that date? The pain was so sudden and so severe I thought it was my appendix about to burst. My appendix? Yea, that's the location of the adhesion, so I'm probably going to be really screwed if I ever have problems with my appendix as I won't be able to tell if the pain is from the appendix or adhesion.
So I decided to go to a pain clinic on my own free will. I thought perhaps they would be able to do something for me. I made an appointment to MAPS in Coon Rapids, MN. I initially requested a female providers. I feel more comfortable with female providers. They understand female health issues and it's been proven they listen to female patients better than male providers do. The first available appointment for the female doctor was 3 months out. I decided to suck it up and make an appointment with a male doctor. I check in and the front desk says "You know your appointment today is with a male doctor, right?" I'm like yea, I made the appointment. Duh. The nurse brings me back and says "Your seeing a male doctor today." At this point I realize they made a note on my chart that I requested a female doctor. Why would they do this? I'm not sure. When the doctor comes in the room he doesn't say hi, hello, nice to meet you. His first words to me are "I can't exactly get a sex change, can I? I don't think my wife would like that." Even after that, I still didn't get a hi, hello, etc. I was flabbergasted. I was speechless (that doesn't happen often for those who know me). Needless to say the rest of the visit went downhill from there. I left there feeling like the lowest piece of shit, like a drug seeker, like I wasn't good enough to be treated with respect. I went to my car and cried. I kept thinking why would anyone want to go to this clinic? Why should anyone be treated this way? I never went back. I also decided at that moment when I got my nursing license I would NEVER treat a patient that way. That doctors name by the way? Dr. Thomas Cohn.
Think I'm being mean, rude, etc? Then may you have an experience like mine. Walk a mile in someone's shoes...
Since this Behcet's thing doesn't appear to be going away anytime soon, it was off to another pain clinic- United Pain Clinic. I tried my best to keep an open mind and not lump this pain clinic into the category of the other one, a.k.a. shitty pain clinic. Now, if I had written this on Tuesday, I'd have nothing but nice things to say. I brought my mother-in-law, Sue, with to the appointment for three reasons. 1) for support 2) to help me remember what they say 3) to have a witness in fear of them trying to pull some shit. I saw Dr. Sena Kihtir. The visit went well, she even knew what Behcet's was as she is from Turkey. She hasn't treated anyone for Behcet's since she lived in Turkey, but it was nice not having to explain what Behcet's is. The treatments we are going to do are Botox injections for my headaches, aqua therapy, biofeedback therapy, and adding Lyrica and Piroxicam to my meds. She asked me if she was going to be managing my meds or if my PCP was. I said I didn't know as we didn't talk about it. The next day I sent a message to my PCP and since I'm getting into meds she is not familiar with, she'd prefer they manage it, so she forwarded it on to Dr. Kihtir. I get a call about 3 PM yesterday, who I thought was the nurse but now realized it was Dr. Kihtir, stating I have to do a drug test and bring in my medications to her before she will prescribe them. Here's the problem with this. I do not have insurance and it would cost me $500 dollars to have this drug test done. Yes,$500! Now, I don't know about you but how many of you can afford this? Especially when you are out on disability. Trying to make ends meet when you're on disability is NOT easy. I said to her "I cannot afford $500 right now." Her response: "That doesn't matter. In order for me to prescribe them, you need to do a drug test." Guess what, it matters to me! She said she was going to send a message back to my PCP and I said "So am I." So I'm going to back track to Tuesday to tell you more specifics of my office visit with Dr. Kihtir. While I was being roomed by the CMA, I told her I cannot afford to pay the $500 but will be more than willing to do the test once I can get MN Care (hopefully November 1st). Why November 1st? In order to qualify you have to be without insurance for 4 months. Think we don't need health care reform? May you be placed in my position right now and see how well you manage with a chronic illness that requires anywhere from 3-15 visits a month to doctors. OK, I'm getting away from the visit. The CMA made it sound like it wouldn't be a problem. She even had me sign a narc contract. What is the point of the contract if they aren't prescribing me meds right? I can't think of a reason. As of yesterday it's not in my chart, but I have my copy at home. Then let's discuss the fact that Dr. Kihtir said I need to bring my medications down for her to see. I offered for her to see them at the visit Tuesday and she didn't seem interested at all. In fact, she didn't even respond when I offered them for her to see. And yes, she heard me because Sue heard me across the room. I am happy I had my mother-in-law with as she can back up my story about how things happened. In fact, her words to me yesterday were "I was under the impression it wasn't a big deal and you could do the test when you have insurance. They made it sound like it was no big deal." Thankfully my PCP is continuing my meds until I can get insurance.
So what next? Well I'm not one to stay quiet about things. Especially when it comes to the company I work for. Since I have had this experience, I have decided to write one of the higher ups in the company hoping he can help me and others who are in my position. What's my position? Backed into a corner until I can get insurance through the state. I have Allina Partners Care, however, they do not cover this drug test. I was going to go to Allina's Penny George Institute, which is an alternative healing place, but they do not take the Allina Partners Care. With the big stink about narcotics now-a-days (and yes I understand why), you think they would want people to go to any place they might benefit from to cut down on narcotic use. I am very disappointed that Allina Partners Care doesn't cover these options. What about the people who do not have a PCP who cares about their patients? And yes, they are out there.
Have I mentioned that stress triggers flare ups in BD? How many people get stressed over these types of problems? Many of us do. Unfortunately we get backed into a corner more often than you realize. What am I hoping will happen with the letter I'm writing? I'm hoping to help patients down the road. I don't think the policy will change anytime soon as everything has to go through numerous people/committees before a final approval will even happen. I hope this inspires more people to write their clinics about what needs to change. If nobody talks about it, how do we expect things to change? My motto is: If you are going to bitch about it, do something about it.
The quote below is one of my favorite quotes ever. You want the world to change, step up. You want people to change, step up.
"Be the change you want to see in the world." ~Mahatma Gandhi
Friday, September 7, 2012
Updates, Updates, and More Updates...
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
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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