Friday, January 20, 2012

You're Fired!

Donald Trump isn't the only one who is allowed to say "you're fired". Never be afraid to fire a doctor that truly isn't helping you or that isn't treating you with respect. Finally after three years of bouncing around to different places, I think I have my ideal medical team in place for a while: a uro, a regular gyn with Vulvodynia knowledge, a pain management doctor and a physical therapist who specializes in the pelvic floor. I would not have this team if I didn't work up the courage to fire my vaginal specialist and replace that specialist with my new gyn.

The vaginal specialist that I fired was actually part of the initial duo at a hospital that diagnosed my V. I already knew I had V from extensive research, but the bone head gyn I had at the time didn't believe me and didn't want to deal with me so she let me suffer for 3 months while I waited for an appointment with this advanced vaginal specialist. Even when you correctly self-diagnose yourself, you need a doctor to write out scripts for the treatments.

You're fired!!

The first time I went to this vaginal specialist, I was just so grateful that someone agreed that I had Vulvodynia that I wanted to kiss the sky. I was new to the world of under discussed women's health conditions. I didn't have the wealth of knowledge I do know. The NP I saw prescribed me a low grade antidepressant with nerve pain blocking qualities, it helped lower the pain at first which is always a miracle when you have been suffering for 3 months in 10 pain alone and laughed at by ER staff. Her bedside manner was not very good, but I didn't think much of it.

Eventually, my health got worse as I was diagnosed by a urologist with IC which causes my pelvic pain to be worse. I also could not tolerate some of the side effects of this very old school medicine she had me on. She was very nasty to me when I wanted to switch medications. She gave me a new antidepressant with nerve pain blocking qualities but was not happy about it. She thought her original prescription was the be all and end all of meds (even though the psych community no longer uses it b/c it is such a sucky medication). 

As time went on this woman got meaner and meaner to me. She made fun of every well researched suggestion I had for my treatment. She also would lie to me about the existence of medications and treatments that I knew were real b/c I am very active in the IC and V community and I have friends who take them. One day, I had to reschedule my appointment and the receptionist told me there was an opening with the doctor instead of the NP. I thought I hit the lotto. I could be free of this mean woman. The doctor prescribed me something that helped for a while, but since V as well as IC can both be diseases of progression I eventually needed additional help. 

I am a very educated patient at this time. I read up frequently on treatments new and old. I am in support groups and forums and I of course write this blog. I know of maybe 15 possible treatments for V. This closed minded doctor only offers FOUR. If those four don't work for you it's like too bad, too sad. When I went in there crying in pain one day, the doctor prescribed me a compounded cream even though a similar cream did not work in the past. I reluctantly ordered it even though it was $50. Well, I should have listened to my gut instinct b/c the cream lit my girl zone on fire. It impacted my V and IC symptoms for 2 days and I was very, very sick.

I called the office to complain. Even though I was a patient of the doctor, the NP called me back. She showed no sympathy, did not apologize and even tried to blame me since the cream "works on other patients" ( two V patients are the same you fool). I asked her if I could just take the oral version of the active ingredient in the cream that was supposed to help my nerve pain (it was non-narcotic and did not have an interaction with any of my other meds). She yelled at me and accused me of being on too many medications. A few other harsh convos were had between me, the NP, the receptionist and more. I don't want to get into it but I was treated terribly.  

That's when I decided I was DONE. I deserved to be treated better. There was a non-narcotic medication I knew could give me some relief and she denied me. Animals are treated better than this. I saw my kind uro a couple of weeks later and he was happy to prescribe me the medication. He thought it was a great idea. Two weeks later I found a new gyn someone recommended to me. She is kind and open minded and wants to help me and work closely with my other doctors.

Cancelling my last appointment with the mean practice was awesome. I called and told them I needed to cancel. The receptionist asked when I wanted to reschedule and I said "NEVER".

You deserve proper medical care. Don't let someone leave you in pain or make fun of you. I stayed in the wrong place way too long b/c I was nervous to branch out. Know your body, research treatments. If there are treatments you want to try and they are non-narcotic and the doctor flat out makes fun of you, get a second opinion. Some doctors can't prescribe narcotic treatments or other certain controversial treatments, but a good doctor would  refer you to pain management to discuss those treatments with a doctor who is allowed to order those treatments. If a doctor won't send you to pain management and you are in pain, it is also time to get a new doctor. It took me a while to learn this as well. 

You are a person. These illnesses are very personal and you deserve a kind doctor who will treat you with respect. You also deserve treatments that can help you to live your life as comfortably as possible based on your personal symptoms and diagnosis. IC, V and related conditions have no cure. The medical community can not leave us hanging forever. They need to help us.

If a doctor treats you like crap, never be afraid to say "You're fired!!".

Wednesday, January 11, 2012

Yes, Sometimes We are Bitchy

Yes, sometimes we IC gals are a little bitchy, snippy and short-tempered. We are not snippy because we are mean people, we are snippy because chronic pain makes us this way. Chronic pain can lead a person to have a very short circuit. IC is a terrible condition and sometimes the pain can be unimaginable.

During high school and college, I used to be told that I "smile too much". I was always a very friendly person. I could light up a room and make other people happy.

Today, I am still a friendly and nice person. I am caring and generous and still have friends. But one thing is different, I am in chronic pain. 

Sometimes we IC gals may be giggly and nice, but a lot of times we may be struggling to put one foot in front of the other. Our bitchiness is probably experienced most by those closest to us. The more time someone spends with you,  the more likely they are to see you snap. It's easy to put on a smile and run into the drug store and attempt to be care free in front of the cashier. But it's a whole different story to always keep it together at home 24/7 when chronic pain is present, so our families suffer the most.

The biggest problem for me personally is that sometimes I am trying with all my might to do a task in 10 pain and then if someone nags me or picks a fight with me that is it, I verbally snap. I am short-tempered and snarky b/c I just can't handle anything else at that moment. I know I wouldn't be snarky in that situation on a day I wasn't in pain. 

So why are IC chicks sometimes bitchy?? Well imagine this...

Imagine you were minding your business and suddenly it felt like someone was pouring battery acid on your bladder.

Imagine you were working on your computer or watching TV and suddenly a level 10 pain shot through your vagina.

Imagine you were in the mall and suddenly your vuvla felt on fire to the point where you wanted to cry.

Imagine you were cleaning your house and suddenly you fall to the floor in tears b/c a shooting pain is radiating through your thigh.

Imagine you are trying to type up something and you can't finish it b/c you have to pee every 20 minutes.

These are the things us IC gals deal with almost  ALL of the time. Could you live like this ALL of the time? Maybe we deserve to be a little bitchy now and then. We have to be strong everyday and try to live productive lives despite the pain. Eventually, anyone would break down from the constant pain.

If you have a friend or family member with IC you need to be a little more compassionate if she seems bitchy or snippy or short-tempered now and then. She likely does not mean to be mean to you, she is probably in great pain and is having trouble coping. 

Now we do have to take some responsibility for our own behavior. Sometimes if I am having a really bad pain day I realize after a flare is over that maybe I said something bitchy to my husband or another family member and I do apologize and the person does understand. I  reassure them it was truly the pain talking and not me.

So before you can judge a girl with IC for being too snippy, you'd have to spend a day in her shoes. Remember those shoes come with a lot of bathrooms breaks, a lot of burning pain and a lot of stabbing pain.

IC sucks. It has taken a lot away from us. So maybe sometimes we are a little bitchy, but I think we deserve to be   ; )

Sunday, January 1, 2012

Things to Say and Not Say to Your Friend with IC

IC is not only difficult on the IC patient, but it can also be difficult on family members and friends. The family members who live with the IC patient are usually the ones who get to see the IC patient at her worst (it's a little hard to hide flares from hell when someone resides in the same apartment or house as you).

Friends on the other hand usually see us at our best. This can make it a little difficult to understand the illness since it is invisible. It may puzzle a friend as to why we have an illness or complain of pain when we "look so good". Other people may see us looking fine one minute and crying in pain the next and become scared or not know what to do. 

IC is a very complex illness. I have tried many a time and in great detail to explain IC to a lot of people and still some of them just don't get it. I don't actually blame all of these people, it is hard to understand. Many doctors don't even get it so it is not fair to assume every person we encounter should.

If you are the friend of someone with IC it is possible to show compassion even if you are having trouble fully grasping the condition. 

Here are some things that you SHOULD and SHOULD NOT say to a friend who has IC.

Things you SHOULD NOT say to someone with IC:

"Gee, you seem to get sick a lot"- Us IC gals find this very annoying. We don't "get sick a lot" we have a chronic condition ALL OF THE TIME. Some days our condition is mild and some days we can have horrible flares, but the condition is always there. If you have a friend with arthritis or diabetes, that person has the condition always. Think of IC the same way.

"Get Well Soon"- While you probably have the best intentions when you say this, don't. Get well soon is the kind of thing you say to a person with a cold or sprain. You want the person with the cold or the sprain to feel better soon so they can go back to being healthy and so that they will be healed the next time you see them. IC patients can't go back to being healthy or be healed. IC is a chronic condition with no cure. It is part of our life everyday, not something we can get over soon.

"Oh, you're out at this party, you must be cured"- IC can be a very painful illness, but since it is not going anywhere, we do need to get out of the house sometimes. Many ICers are forced to be homebodies a lot, which can lead to depression. Some social interaction is good for us. We may even be in pain while we are out, but we need to do it now and again so we live a full life. We also want to be there for the important milestones of the people around us such as a family member's wedding or a friend's birthday party. Just because we are not in a bed connected to tubes doesn't mean a magical cure has come upon us.

"Can I use your cushion?"- You may see some ICers take cushions places from time to time. These cushions help us to sit with less pelvic and bladder pain. I have had people ask to borrow my cushion (or even worse, I had someone TAKE my cushion when I went to get a soda and they started using it as a neck pillow). Our cushions are not a toy, an airplane neck pillow or something to make your back more comfortable. Our cushions are assistive devices which allow us to sit in a restaurant, drive cars and more. Messing with an ICer's cushion is the exact same thing as touching a person's cane or wheelchair---it is very inappropriate and disrespectful.

Things you SHOULD say to someone with IC:

"You can go first"- If you are with a group of friends at a restaurant or a bar and there is a whole bunch of you waiting to use the restroom, the greatest gift you can give to your IC pal is to let her cut you and use the bathroom first. We get it, everyone in the line legitimately has to pee, but your friend with IC will get shooting pains if she can not use the restroom. Saying "you can go first" means a lot to your friend both emotionally and physically.

"I understand when you can't make it"- Sometimes we have IC flares so bad, that we have to miss out on things we really want to go to like a dinner party or a movie night. We feel TERRIBLE enough when we have to cancel. If you tell us that you understand that we can't make it and you mean it from the heart, it means the world to us.

"I'm here for you"- Having a chronic illness can cause a person to lose a lot of friends. Not everyone wants to be around the girl who can no longer dance on table tops or go a mile a minute. If someone tells us they are here for us, we really appreciate it. Doing simple things for your IC friend like talking on the phone or planning a fun activity which your IC friend will be comfortable doing such as playing video games in your pajamas can really put a smile on your friend's face.


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