Screaming "Monica"

As today is Halloween, you may hear many people screaming: screaming during a scary movie, screaming because a family member pulled a Halloween prank, screaming on a haunted hayride. Last week I heard a different type of scream, a much more bone chilling type. 

I started DMSO treatment last week for IC. If you don't know what this treatment is, to make a long story short a solution is put into your bladder directly with a catheter and then you have to lay on your side and rotate every few minutes. When you are done you go to the restroom and urinate out the solution. This is a six week treatment program, once a week, and I have only gone to one appointment so far, but I was excited to try it as I am hopeful it could help my symptoms.

This procedure was being done at my uro office, who I get along with, not to be confused with my V doctor who has me beyond frustrated. Since I was very nervous about getting the treatment my first time, I sat anxiously in my exam room waiting for the nurse. As I waited and played Angry Birds on my phone, it dawned on me that the receptionist told me that they only do this treatment one day a week and to try not to ever cancel an appointment b/c they need to fit a lot of people in. This means there were other real live IC patients just feet away from me in other rooms. I have never met another IC-er in person so the thought intrigud me.

As I continued to play my game, suddenly I heard screaming. It was coming from another exam room. 

"I CAN'T DO THIS ANYMORE!!!!!" a woman yelled, we will call her "Monica" for the sake of this post. "I AM SICK AND TIRED OF BEING IN PAIN ALL OF THE TIME. NO ONE LISTENS TO ME. NO ONE IS NICE TO ME. NO ONE HELPS ME." She also dropped several f-bombs and was making tons of noise and banging around.

A nurse started SCREAMING back at her. They fought for a while.


The nurse then paraded out in the hall and started screaming at other nurses: "I CAN'T TAKE MONICA ANYMORE. TELL DOCTOR SO AND SO I REFUSE TO HANDLE HER. SHE ALWAYS ACTS OUT OF CONTROL".


As I listened to this scenario play out, a few different things went through my mind:


1. Someone was getting in trouble at the doctor's office and it wasn't me. (I have had fights with many a doctor, but never at that level where the whole place could hear. This was no small office, this was a huge hospital.  I felt terrible for her, but I guess it made me glad to know I am not the only one who fights with doctors)


2. Did Monica have IC? Should I go talk to her? (I knew that I couldn't. I know that I would probably get in trouble for going near another patient's room and asking about her condition, but I wanted to so badly. I wanted to tell her that she wasn't alone. I wanted to tell her about the people who have treated me like crap over the years. I wanted to tell her not to give up.)

3. I hoped Monica's nurse wasn't the person who was going to be doing my procedure--luckily, she was not.  (I know this is selfish, but the nurse sounded very hostile and out of control and I was just petrified to have someone in that state of mind catheter me.)


The screaming continued, blood curdling screams. Monica was truly in pain. I wondered if someone was too rough performing an exam on her. I wondered if she was being denied pain pills. Eventually after a few more minutes of drama it got quiet, I think I heard someone get Monica's doctor. 


As I did the rotation part of my procedure, I had more time to think. It was just SO SAD that Monica had to go through that. We have so much available to us in this country and there are women screaming out loud in pain and still the medical community does not take IC seriously enough. I wish every doctor who has ever treated an IC patient badly could have heard Monica scream.


I guess Monica's scream was like the scream heard around the world for me. I am in a lot of online support groups and I read about other women's IC pain, but to hear another women screaming in a hospital the way I have screamed in my own home on my darkest day, it was like bringing it all to life.

As for the nurse, she said some horrid things to Monica. A part of me wishes the nurse could have IC just for one day (I would never wish it on anyone for real) so she could understand why Monica was so cranky. Many nurses and doctors don't have enough compassion b/c they can't feel our pain.


And Monica...I wish her well. I wish her more pain free days. I wish I could tell her that even though the hospital staff wasn't listening, I was.

Don't Stop Believin' (Me)

I feel like IC has made me flaky in terms of keeping up with social outings. Just a couple of years ago, I was the kind of person who you could ask two months in advance to meet you for a cup of coffee at 4:00 pm on a Wednesday and I would be there on time and with no reminder. I RARELY cancelled on anyone, ever. Even if someone was mean to me or if I didn't think an event was too exciting I would still show up.

Now b/c of IC I don't have the luxury of always being able to keep plans I make in advance. I feel scared that people I know are judging me and I am scared that one day I am going to wake up and no one is going to want to be my friend anymore because I am now one of "those people" who always cancel. The difference between the IC me and "those people" is that I really WANT to keep my word. "Those people" cancel plans at the last minute only for you to find out that they passed up your party for a better offer. When I cancel on someone I am likely at home on the couch with a heating pad.

Don't Stop Believin' Your IC Pals

I think some friends and acquaintances try very hard to figure out a pattern of how IC effects my social life. If you are reading this and you have tried to analyze the pattern, please stop. You will not find an answer b/c even I don't have the answer.

It is very hard for me to explain to people how random of a disease IC is. I swear on all that is important to me in this world that some days I can do a tap dance and other days it takes all my might to get out of bed and do what is required of me. Some days I have lots of energy and other days I want to go to the ER b/c I am in so much pain. 

It is really hard for an IC patient to figure out how she is gonna feel day in and day out because this disease is still so under researched and we still don't have all the answers that we need and neither do doctors. It is especially hard on me b/c I have no food triggers really. My IC is different than some, very triggered by stress and it also involves a lot of nerve pain. It's not like I can say let me avoid eating this orange and I will be fine today. It doesn't work like that for anyone and especially not for me. I can literally be fine one hour, happy and virtually pain free and the next hour be crying in pain. 

I think it is also hard for people to understand why sometimes I seem TOTALLY normal. I have to push myself sometimes to have a social life as I am only in my late 20s. Now and then when I am feeling up to it I do treat myself to a night out drinking or dancing. People may see me there and think I am nuts to claim to have such a painful disease, but what people do not see is that it takes me two days to recover from the outing. I may wake up with a throbbing bladder and aching muscles because of the outing and have to be within arms length of a heating pad and a bathroom for the next 48 hours. I no longer have unlimited energy the way I did in college. I have to make choices. If I know I have a friend's birthday party on a Saturday, I know I need to rest Friday night because if I don't there will be a good chance I am going to be flaring and miss it.

When push comes to shove, when something is super important to a friend I would go in 12 level pain if I had to. I would never miss a wedding or graduation or any other event that big unless I was literally in the hospital and wasn't allowed out. I will always push through pain to be there for other people for the most important times.

I just want people to believe me that if I cancel on meeting them for an ice cream cone or a cocktail it is not because I don't like them or because I am mean or because I am truly flaky...it is b/c this condition is getting in my way and I am doing the best I can day in and day out to learn how to live better with it.

Some days I do worry about waking up with no friends b/c they don't want to tolerate my IC scheduling issues. But I try to stay strong and remember that the older I get it is more important to have a few good friends then a ton of fake friends. I know if someone truly cares about me they will always take my word and forgive me when my IC makes me a drag.

So if you have a friend who has IC or any similar condition, know that she wants to be as active as possible, it's just that sometimes she physically can't. Don't Stop Believin' (in her).

"You are Running Out of Options" ??? (hmmm)

Hell hath no fury like a woman suffering from chronic pain. I think that makes a good tag line for my day. Like many of my readers, I have been through hell with many doctors. I have had doctors make fun of me to my face for "making up" pain. I have had more than one sexist urologist office try to give my appointment away to an old man because "I didn't look sick enough". A lot of these infuriating instances happened a few years back when I had no diagnosis of any type. Now that I have been diagnosed with FOUR painful conditions, you would think this madness would end. Nope, doctors are still finding ways to be mean to me.

I may be a doctor, but I have no idea how to help you.

I have one type of sharp pain no one can seem to get in check: not my uro, not my V/PFD specialist, not the primary care doctor who abandoned me etc. So I lived with this pain and do my best. Although many IC and V patients are treated successfully with a monitored amount of pain killers, I know better than to even bother asking for even one pain killer b/c I don't want to hear statements such as "you are too young for pain killers", "you are making up your pain for drugs" or my favorite "our office is in the ghetto so we can't let anyone have pain killers b/c we don't know who is really sick and who is selling the pills". Yes, all these things have actually been said to me over the years.

I have four treatments right now 2 oral medications (non-narcotic), a suppository and I am in physical therapy. While these things help some of my other symptoms, they do not help this one pain. So at a trip to the V doctor last week when I again complained about this pain, I was offered a new cream the doctor was just sure would be helpful. I sent in my order to a compounding pharmacy and as I researched it, I got excited that the cream may help. It contained a medication with nerve pain blocking qualities and I feel this pain is nerve related.

My "magical" cream comes and I am so excited to use it. Only five minutes after applying it I was in pain so bad and had a horrible reaction. I was crying and screaming and my hubby wanted to take me to the ER. The ER here seems to hate IC patients so I wouldn't let him. It was a hell-ish night and took me 12 hours to feel better.

I was very ANGRY that I was prescribed this cream. It costs $50. I have been with this doctor over 2 years and if there was ANY chance I could have a reaction I think they should have warned me. Compounding pharmacy medications do not come with the typical warning labels that regular medications do, so it is really up to the doctor to let me know about side effects.

When I call to complain about this medication and asked for an alternative treatment I was SHOCKED by how poorly I was treated. They have the NP (who I do not like b/c she has NO bedside manner call me). "You should stop using the cream", she tells me. Hmmm...YA THINK!!!!! I almost went to the ER b/c of the cream, clearly I already stopped using it. 

When I ask her if I can try the oral version of one of the medications in the cream (non-narcotic), a simple "no" comes out of her mouth. "You are already on one oral medication and we don't allow patients to be on more than one oral treatment at a time". I was baffled and in shock. I hung up and everything began to sink in. She was so full of it. I know some IC patients who are on 10 different oral medications and I am not allowed two??! (which would actually be three, clearly she doesn't even read my chart).

So I call back in tears demanding to talk to the doctor and instead I get her again. BLAH. "You really need to come in again if you want us to evaluate you for anything new". "I was just in five days ago I tell her. What could of changed since the doctor evaluated me then?" "Well, I don't know how to tell you this, but you are a complex case and you are running out of options." 

How on earth am I running out of options???!!! You have to be kidding me is what is going through my head. There are so many options I have never been allowed to try: trigger point injections, botox, narcotics, TENS and the list goes on and on). 

But in her mind b/c her magical cream didn't work and I could not tolerate Elavil, I am running out of options. I told her I just wanted her to know that I was angry he prescribed that cream. She said well, "I am sorry if you feel that way but there is no way we could have known. Many other women describe this cream as life saving." (They prescribe it to that many people and I am the first one to have a reaction?! Doubtful).

I told her I really want to talk to the doctor and he is supposed to be calling me back tomorrow. It will likely get me nowhere. I am starting bladder installations with my URO next week. I am also looking into new treatments and doctors in other states. 

 I feel really taken advantage of by this particular doctor's office. She kept insisting I had to come back even though they just saw me. I really feel like they just wanted more money and don't care about my health at all. The doctor will probably end up not helping me over the phone, I will probably end up just keeping my normal follow up appointment instead of scheduling a sooner one and I will probably just suffer in silence. But I am hurt, hurt to have ANOTHER doctor tell me "Hmmm what can we do??" when I am not being given a chance to try even a fraction of the known treatment plans. I feel abandoned. I want a doctor who actually cares about me and about curing and healing pelvic and bladder issues. Does such a doctor exist??


I realize this post is more ranty than most of my usual posts and is also kind of a downer and doesn't really have any inspirational or women's power message at the end like most of my posts. I apologize, but it is just one of those days. I guess sometimes we all just need to rant.

IC Should Stand for Insane Cost

Today I am going to talk about a part of IC I haven't talked much about yet: the financial aspect of having IC. On an everyday basis, I am pretty much a private person about money (I don't like to tell people my household income, rent price etc.), but I think it is important to address this issue with specific examples so people can really understand the burden this illness causes many people in so many ways. 

Since I got married in September, I really didn't want to have to go through a bunch of procedures and appointments in August and September, so I am kind of paying for it now, playing catch up with a a lot of doctors.

Last week I had to go to my Vulvodynia specialist in Philly. This is what it cost me:

Bridge toll: $5
Parking lot fee: $15 (This may seem insane to some, but this place has no private parking and in Philly and NYC unfortunately many lots cost this price) I couldn't drive around looking for a cheaper lot or I would have missed my appointment.
 Co-pay: $25
I was given a new prescription cream: $50!! (lovely...sarcasm) 

So my total cost of visiting the Vulvodynia specialist totaled $95, not including gas used in my car.

Then this week I had to go back to my new IC specialist:

Bridge: $5
Parking: $6 (this place has its own lot...yay)
Co-pay: $25


I was not given any med changes, so no cost there. So my total for that appointment was $36 which is a more refreshing number than the $95 total at the other doctor.


However, there is more to this story. The doctor found an in office treatment for me to start at the end of the month (yay). I really need to try this treatment to get pain flares under control. The downside? I have to go to this office for six weeks straight. So the parking, bridge and co-pays for the six visits will amount to $216 dollars.


This is all on top of the 16 weeks of physical therapy I am already involved in at $25 a pop (so $400 total) and the medications I take each month: one costs $5, one costs $15 and one costs $36.


I remember the days right out of college when I would ask myself "what happened to my money?" and it would turn out I spent my extra cash on sushi, cocktails or shoes. Now I definitely spend a lot of my budget on IC.


As frustrating as spending this money is, I want people to be aware that I am in NO WAY the worst case scenario. I have good health insurance through my husband. I know tons of ladies with IC with no health insurance or not so good health insurance and these costs are a TON more for those people if they can even afford the treatments at all. I know I am blessed to have health insurance and to be able to afford my treatments.


Since there is no set in stone cure for IC a lot of patients spend a ton of money trying different treatments with the hope that maybe, just maybe something will help.


So the next time your friend with IC says she needs to stay in to save some money, go easy on her, it is likely not an excuse. Having IC is expensive. It is an expense people without chronic pain don't really have to think about.

Fall Fashion Tips for the IC Gal

Hello all...I am BACK from my honeymoon (only 2 mini flares the whole time...woo!). I think the lack of stress while on vacation helped. So I am back and back in time just for fall weather. A lot of your friends may be posting status updates on Facebook such as "Yay, jeans and hoodie season". Jeans are great for many people, but for a lot of IC gals jeans are the most hellish item on earth to wear. If you can't wear jeans it doesn't mean that you can't look cute and get excited about fall clothes. As a person who has not worn jeans in over 3 years, I am here to offer you some of my own tips and tricks. Please feel free to add comments about other ideas that work for you.

Fashion Dos For the IC Gal 

Do...

Invest in multiple pairs of leggings. Leggings can be an IC gals best pal. The stretchy waist and seamless crotch area make them very comfortable.

Fall in love with tunics. Tunics can hide IC belly, med related weight gain and are also very stylish. You can buy casual tunics to run errands in or jeweled ones for a night out on the town.

Learn that matchy tracksuits are your friend. Tracksuits can make you look pulled together while still feeling comfortable. Don't be discouraged about not being able to afford "Juicy Suits" or other expensive brands. Tons of affordable tracksuits exist at stores such as Old Navy, Target and Burlington Coat Factory.

Buy cotton/spandex blend yoga pants in black. These pants can be pulled off as dress pants in business casual situations. Just pair them with a button down or sweater and pumps and you will be good to go. You will no longer have to worry about the painful crotch seam on "real" dress pants.

Get excited about handbags, ankle boots, jewelery and other fun accessories. IC may limit the kind of pants you can wear, but the illness can not stop you from accessorizing to the max.

Embrace dresses. Dresses are a great way to feel pretty while still letting your vajayjay breathe.



Fashion Don'ts for the IC Gal

Don't...

Wear any item of clothing that hurts you just to be trendy. Your health comes first not what is being advertized on the cover of any magazine.

Live in pajamas ALL of the time. Sure, pajamas are awesome for the IC gal ( I LOVE LOVE LOVE pajamas) but being in pajamas 100% of the time can lead to more depression for some people, especially in the fall and winter. Even if just once or twice a week, put on something else...even just a tracksuit, a little makeup and some jewelery so you can feel extra sexy and fun.


Allow anyone to force jeans upon you. You may have friends or co-workers who harp on you for never wearing jeans. It is none of their business. Next time someone bothers you, just say "jeans are not my thing" and move on.


Get discouraged if your shopping budget is small. Start by shopping in your own closet. So many older pieces mixed with newer pieces are coming back in style. There may be tons of hidden treasures in your own closet. You can also find great deals at discount outlets and gently used designer clothing places such as Plato's Closet.


Forget to shop online. Websites such as Overstock.com have awesome deals. 


Hope you enjoyed these tips. As an added bonus, check out my first in a series of IC awareness videos. This one features an animated young woman defending her condition to an uneducated college classmate:

I.C. Awareness: Are you that girl with that random disease?
by: thevalcat