Mad as Hell and I Can’t Take Anymore

I have been mad as hell since Saturday. It all started at my child’s soccer game. I went there straight from work and got there about 15 minutes early. By the time the whistle blew to start the game, I had to use the bathroom-badly. I asked my boyfriend where the bathroom was and he said he thought it was near the entrance. He was wrong. The game was held at a school. It was Saturday. There weren’t any bathrooms open. Not even a Port-A-John which I would have reduced myself to using at that point. Since I was almost to the parking lot, I decided to get in my car and drive in search of a bathroom. I stopped at a local pharmacy, CVS, to use their bathroom but was told they didn’t have a public bathroom. What? I may or may not have dropped a few expletives as I was leaving. The next choice was Dairy Queen-someplace I view as dirty and therefore, never go. Desperate times, desperate measures. I went there and to was pleasantly surprised to find one very clean bathroom. I went back to the soccer field and was briefed by my boyfriend about the score. Then he turns to me and asks if I found the bathroom. I turned to him and asked him if he really thought I’d found a bathroom at the school and oh, by the way, did you happen to notice I was gone for fifteen minutes? Uh-hum…anyway, moving on.

When we got home that night, we discovered our heater was out. I realize that I live in Az and it was only about 65 degrees out but I’m a desert rat through and through and it was cold. Plus, in my defense, our house is 25 years old and there is a 10 degree drop in temperature from one side of the house to the other. Oh, and that drop happens to be on the side of the house that all the bedrooms are on. My boyfriend called the on call maintenance person twice before we got a call back from her. She had him try a few different things like check the breaker and make sure the heater was actually in the ‘ON’ position. Still, no heat. She told him she would send someone out first thing on Sunday. Sunday afternoon arrived and still no heat and no call from her. After two calls she finally called back to say there was not a heater guy available. She was lying. She’s just lazy. I’m sure she was sitting there in her Lazy Boy kicking back a few beers while watching the game. So sorry to have interrupted you, bitch. Heater guy didn’t show up until today. So glad a blizzard didn’t hit us in the meantime. Neither her boss nor her boss’s boss will return my call. I’ve had issues with this maintenance lady before. Just to put a little humor into this whole house situation, today I get a letter from the real estate management company advises us that for a $25 rent increase, we can renew our lease at the end of December. Really? In this economy and with so many houses vacant in Az they have the cajones to try and raise our rent? Hell to the no. We’ll be moving at the end of January. Hey, if you have a truck and like to life heavy objects you’re welcome to join us.

I work at a call center and this years schedule has me working weekends. As a courtesy to the person I’m relieving, I can plug in ten minutes early, get the briefing of what’s going on and let the person leave. Sunday, I put my stuff down at t6:30 a the station I was assigned to work. A woman who has worked there many years but who I don’t really know other than the fact that I’ve heard she’s bat shit crazy, is the person I’m suppose to relief. She asks me if I’m her relief. I answer yes. Then she says, “Let me just say this: if you are not plugged in by 7:00 I’m going to kick your ass.” And this grown woman was serious. I replied, “I can take you, bring it on.” She reiterated,”I will kick your ass,” to which I again replied, “I can take you.” and walked away. I didn’t realize I was back in junior high school. When I came to sign in at 6:59 and a half minutes (yes, I purposely didn’t plug in early. I’m evil like that), her other personality kicked in and she was all apologetic and embarrassed. As well she should be.

Yesterday, I had an appointment with a new Neurologist. I was told when I made the appointment that I would be seeing two doctors in one visit. One for migraines and the other for TMJ-all for one co-pay. When the doctor came into the room, she informed me  that I would only be seeing the migraine specialist that day as a TMJ specialist required a separate appointment. When I questioned her about what I was told when I made the appointment, she told me I needed to call my insurance company and find out if treatment for TMJ was covered. I told her it would have been wonderful if the person who made the appointment would have told me that so I could have called for that information beforehand. She said it wouldn’t have mattered because I wouldn’t have seen both doctors in one visit anyway. To say I was getting agitated would be down playing the situation. After she asked me several different questions, she left the room for about twenty minutes. She returned with another doctor who asked the same questions and did the same ‘is your right side as strong as your left side’ tests. All I really wanted from these people was a prescription for Imitrex in pill form because the nasal spray was making my bladder hurt afterwards. By the time I left, they gave me that prescription plus one I didn’t want for anti-inflammatory’s, wanted me to have an X-ray of    my neck (that’s where the headaches usually begin) and wanted me to go to the physical therapist that worked in their office. All sounded pretty good to me. What didn’t sound good to me was when the doctor said she could shoot Lidocaine into my shoulders to dull the pain. I told her I’d have to think about/research/no way in hell and get back to her. Then came checkout time. I inquired to the lady behind the counter about why I was told I was to have a double appointment and only got one. She him-hawed around and even went to ask the first doctor I saw, then came back and told me to call my insurance for prior authorization for TMJ and gave me a small piece of paper with numbers and letters on it that my insurance company was suppose to translate into whether or not they covered it. She gave me directions to a place nearby to have my X-rays taken. Then came the physical therapist. I was told yet one more time that I would have to call my insurance company and get prior authorization because she didn’t do just any type of PT. Oh no, she did Craniosacral Therapy and I would be required to pay a $35 co-pay each time. I left the office really pissed. The only good that came from that appointment was that I got a prescription for my migraine medications. Which leads me to my next experience.

I dropped off the prescription at Walgreen’s yesterday afternoon and told the faceless pharmacy tech at the drive thru window I would need the script tomorrow morning. This morning, I dropped my son off at school and drove to Walgreen’s. I went inside to pick up my meds because I had other things to buy. I was told by the lady at the pharmacy that my medication wasn’t in stock but would be coming in by truck in 2-3 hours. I asked her why I wasn’t informed of this. The response from this 20 something-I-should-be-working-at-McDonald’s-because-I-have-no-customer-service-skills was ‘gee, the techs try and call but you, know, there’s like so much to do and so much going on that we can’t like, always call everyone’. My response was, why not? My time is just as valuable as their time and as the customer, even more so. I explained that it’s not easy to come back two and three times to pick up medications and a simple automated phone call would have saved me the bother. Her response was similar to Dora the Explorer stare after she asks what your favorite part of the program was and waits for your answer. Sort of a blinking eyed robot stare. I said seriously, I should have been advised of the hold up and left. I go home and watch a movie (Bridesmaid’s-2 thumbs up btw). At 1:30 I call the pharmacy’s automated line and find out that my prescription is ready. What a surprise, I never got a phone call. I wait for the message to repeat itself, push the button for the pharmacy, and ask to speak to the manager. I barely get half way through the saga that has become my life when he cuts me off and asks me what my name is. I said, “I wasn’t finished talking to you but if giving you my name will somehow make you listen then it’s Renae.” He couldn’t figure out why I wasn’t being called when the prescription was ready either and like any good task master (read:man who hears a woman with a problem automatically assumes he’s being told about it because he must fix it), advised me he would put in a slip to have my account looked at. I said, so that’s it? You’ve totally breezed over how rude your employee was to me, all you’re going to do is send some slip in? What about her lack of customer service, don’t you feel that needs to be addressed? His response told me everything I needed to know; “I’ve put the slip in and hopefully that takes care of the issue.” I’m irritated and by this time I’m working on a pretty good headache. I drove back to the pharmacy to get my meds. There was someone in one lane when I got there so I drove into the other lane. That person finished and drove off and the car behind them drove up to the window. Guess who was the next person to be waited on? Oh yes, the car that hadn’t been waiting as long as I have. I pushed the Call button and the pharmacist answered me back. I asked if the lane I was in was open. “Yes,” he answered, “I’ll be right with you.” Blood pressure skyrocketing I say “I want to know why you waited on the other lady first when I was clearly here first waiting?” The faceless tech in the drive thru answered “because I was on the phone and he was helping me.” WTF? I drove out of the drive thru and pranced my unhappy ass to the pharmacy in the back of the store. I asked to speak to the manager whom I was on a first name basis with now. I told him my complaint. Afterwards, another employee said “If I may interject, the other pharmacist was on the phone and I went over to help with the drive thru so I just took the next person.” I asked the manager, “Why didn’t he ask who was next instead of assuming it was the car closest to the window? I had been waiting over five minutes.” “Your name?” For the love of all things holy and pure! I gave him my name and he looked me up in the computer. I told him that I’d just spoken to him on the phone. No recognition whatsoever. He asked how he could help me. I told him I wanted what I came there for- my prescription. He went into the back to some mysterious place for quite a few minutes longer than I know it should have taken him. When he comes out, he provides me with…my actual prescription…not my meds. I was l-i-v-i-d. “Are you kidding me?” I asked. “No, you said you wanted your prescription, here it is.”  I asked him for his bosses name and number. He refused and told me to call 1-800-Walgreens. I also asked for the name of the employee that was over in a corner with the guy from the drive thru giggling at how cute they were to and how fun it was to work in a place that lacked total customer service skills and a place in which their boss promoted such behavior. Surprisingly, he gave her name to me. I turned to leave and as I was walking away I heard the manager yell ‘Thank you!” I turned and walked back and said. “Excuse me? Did you have something else to say to me?” He told me he didn’t say anything. I wanted to tell him that if he didn’t shut the hell up I was going to kick his ass but I restrained myself. I was on the phone with 1-800-Walgreen’s before I even left the store. That’s the corporate number he gave me which means I should hear from the district office next week. Calling corporate, according to the angel who listened to me bitch and moan on the other end of the phone, means that a complaint is written up and placed in his personnel file permanently. The manager would have been better off giving me his boss’ name and number. Who’s giggling now, asshole?

After that good time, I get a call from my boyfriend asking me how my day was. I proceed to unload on him-the girl should be working at McDonald’s, the manager never once addressed the rudeness/stupidity/lack of customer service skills of his employees, gave me the actual script back because he was oh-so-cute to his employees by doing so. What was his immediate reply? When you write the letter to corporate, be sure and include just the facts. Leave out your opinions or they won’t take you for being more than and angry customer. WTF? Him too? He and I have had this discussion before. When I’m venting I’m doing just that. I just want to be heard and understood and perhaps cuddled. I don’t need him to fix things, I just need him to listen. Why can’t guys get that? I abruptly told him I had to go and hung up. A part of me feels badly for doing so but another part of me hopes he’ll put some thought into it and figure out where he went wrong. Yeah…..

In conclusion here’s what I’ve decided: reference neuro, I’m not going back. I’m going to make an appointment with my internist, get another script (after all of that the doctor wrote the script for only 9 pills), ask for and X-ray of my neck and back and also for PT on my neck and back at the place where I’m already getting PT done and don’t have to pay a co-pay each time I go. As far as, my bat shit crazy co-worker, I’m going to act like that never happened because she did apologize after all, but I will be watching her. You always have to keep your eye on the crazies. As for the pharmacy, I’m not going back as pharmacies are a dime a dozen here in Az. I already got it filled elsewhere in under a half an hour. As far as my boyfriend goes? We’ll have the talk again. My weekend is now over. At this point, going back to work and dealing with the public will almost be a pleasure.

Is There Another IC Patient In My House?

Wednesday night I hosted my monthly meetup group for people with IC and chronic pain at my house. Last month one woman showed up, this month another one joined us as well. We dealt with the most important things first: food and getting comfortable. Once the food was layed out and our we were settled in a comfortable spot, sans shoes, we got started, It was an interesting triangle. The lady who was also at the last meeting has fibromyalgia. I have IC. The lady who I’ll call Jennifer, has both IC and fibromyalgia. I’m sure by the end of the night Jennifer was talked out after answering questions and discussing her conditions with each of us. The snacks were good and there was never a quiet moment. Now that’s what I call a good get-together!

Part of me wanted to cry with joy when I met Jennifer.There are reportedly millions of people with these disease yet until Wednesday night I’ve never met anyone who has it face to face. I’ve met several wonderful people who have IC through blogging but meeting this lady last night somehow made my condition more real to me. All three of us looked remarkably alike. Long lost relatives? Nope. We were just three women who look fine on the outside while suffering on the inside.

Jennifer has had many chronic overlapping conditions for years but was diagnosed with IC only three years ago. Since I have only been diagnosed since June, I had a lot of questions for her. She had a lot of answers. Some I agreed with and others that I found puzzling or questionable. When she left, I was talking to my boyfriend about her. Well, not about her  per se, but about different things that she said. She made me question whether or not the path of care I’ve chosen (certain doctors, physical therapists, medications) is the path I really should be taking. I slept on it and the conclusion I finally came to is this: there is no right or wrong path with IC. You find a doctor you communicate well with, a physical therapist that you trust, try out medications to see what works for your body, and pick and choose procedures after weighing the pros and the cons. What works for Jennifer may or may not work for me. She may not get along with my physical therapist but I may find that I really like her. As long as I’m progressing towards pain relief, I’m doing well.

As I mentioned earlier, Jennifer is much further along in her journey with IC than I am. She has tried different things and found what works for her-for now anyway. Jennifer is also what I’d call….new agey for lack of a better description. She reads books by Deepak Chopra and Andrew Weil and can repeat phrases from their books like they were her own. Do I want to read those books and repeat someone else’s mantras. No, I don’t. Is it wrong that Jennifer finds some sort of peace in doing this? No. But it’s not for me. I don’t need a health guru to bring me peace of heart and mind, all I need is God. I struggled for over 5 years to find a correct diagnosis. Thinking back to Wednesday night I realized something amazing about myself. I’m no longer a follower. Years ago, before I learned to be my own advocate, I would have taken the information Jennifer gave me as right without question because if she’s had the condition longer, surely she must know whats best right? Now I know that such thinking isn’t always correct. I can take what makes sense to me from her wealth of knowledge and use it for my own greater good. I can research the information that I have questions about and decide for my self if it’s something that will be good for me. Having to fight for doctors to take me seriously and continue with that battle to get a diagnosis that made sense to me has made me wiser, I believe.

It was good to talk with Jennifer. It was good to mentally note our similarities as well as our differences. More importantly, it was good to be in the same room with someone who knew exactly how I felt. I’ve never had that before. I’m hoping that the knowledge I glean from her, the knowledge that’s right for me, will be able to help me further my recovery. It was wonderful to be in a room with two other ladies and feel support and understanding. After this meeting, as with the last one, I felt refreshed and renewed. I felt hopeful.

 

Fear of Physical Therapy (Part 2)

I did it. I put aside my fears and went to the Physical Therapist today. I am very impressed with how much my PT talked with me beforehand about my symptoms and then told me what she guessed was the problem (later after examining me, her thoughts were proven to be correct). She had a plastic model and explained to me all I needed to know and more about the pelvic floor. I had no understanding of all of it’s functions and how large of an area it really covered.

When she did the internal examination she found several trigger points a.k.a painful areas on my pelvic floor. I can only explain the pain I felt being similar to the pain of air on an exposed tooth root. It’s going to take about 4 months of treatments twice a week but I think I’m finally headed in the right direction. I’m in alot of pain tonight that I didn’t expect as I felt pretty good when I went in there. Hopefully, this won’t be the case after each appointment. She did mention later possibly using vaginal weights but I hope it doesn’t come to that.

Special thanks to aspiegrrl, who was kind enough to share her experience with me and in turn, calm my nerves.

Sudden Fear of Physical Therapy (Part 1)

Last week when I saw my urologist, I inquired about whether physical therapy might help with the pain that I couldn’t seem to get rid of. Bladder instillation’s, heating pads, ice packs-nothing was working. The doctor agreed to it and said physical therapy is good for both IC and pelvic floor spasms. As I think I experience both, I was elated to hear this. The nice lady at the front desk gave me a brochure about a physical therapist who specializes in women’s issues; specifically IC. I called last Monday and am scheduled for my first appointment tomorrow. In a weird way, I had been looking forward to going because I was really hoping a new/different method of care might really help.

The lady at the front desk had emailed me paperwork to fill out so that I won’t have to sit in the office an extra 15 min. The first time I even glanced at the paperwork was tonight. And this is when the fear set in. Here is just an excerpt from the consent form:

“Treatment may include, but not be limited to, the following: observation, palpation, use of vaginal weights, vaginal or rectal sensors for biofeedback and/or electrical stimulation, ultrasound, heat, cold, stretching and strengthening exercises, soft tissue and/or joint mobilization and educational instruction”

I expected to receive educational instruction as well as stretching and strengthening exercises….WTH ARE THOSE OTHER TORTURE DEVICES ABOUT? I’ve lifted weights before but never that kind. Rectal sensor? Believe me, my ass is big enough-no sensor needed, thank you very much. I fear this physical therapist is going to see more of my bits than my gyno and my boyfriend have combined this year and I’m really not ok with that.

So help me out, IC community-or anyone really, who has had physical therapy using any of the above torture devices-do they help? And most importantly, do they hurt? I don’t want to come across as a prudish lightweight here but…well that’s exactly what I am! If you’ve had experiences with this line of physical therapy, please let me know if it was worth it and if it’s as creepy as it sounds.

As a side note, I’d like to apologize for the words in blue. I pushed the wrong button and couldn’t change it back. I’m sure you know what the definition of an ice pack or heat pack is and don’t need wikipedia to enlighten you,

My Body is Tired And So Is My Mind

My body is tired and so is my mind. I’m tired of being sick. I’m tired of doing a body check each morning when I wake up to see if I’m well enough to function each day. It seems like I get one issue temporarily taken care of and another issue appears.These past two weeks are a good example. October 14th I had a hydrodistention to hopefully relieve some of my IC symptoms. I knew going into it that I would most likely have 1-2 weeks of a flare up afterward which did in fact happen. I woke up on October 24th feeling better than I had in months. I even blogged about it (A Goodnight’s Sleep). The next day I woke up and wasn’t experiencing any bladder issues but had a terrible headache for the greater part of the day. Wednesday I woke up and my headache was gone and I wasn’t experiencing bladder pain, but I was having IBS issues due to the over the counter pain meds I’d used the day before to try and combat the headache. By Thursday night, my IC was flaring up and I had to do a bladder instillation at home. The flare continued to rear it’s ugly head and on Sunday I had to do another bladder instillation. Monday I continued to not feel well which led to Tuesday night’s feeling of being on fire. Today I woke up in pain. Was it a flare up? No. Was it a migraine? No. IBS? No. Today my pain was related to female issues which may or may not be ovarian cysts. I had a partial hysterectomy in 2008, leaving my ovaries intact to avoid taking hormones and pushing my body into instant menopause. While I no longer suffer through terrible periods, I do experience pain when I ovulate. It seems to happen every other month but is sometimes unpredictable. I do not have the proper pain meds to help me through this. The pain meds I do have barely touch the pain. The pain, for lack of a better way to describe it, feels like labor pains waxing and waning throughout the day. I made it through the day but I cannot tell you how. There was little to nothing I could do to find relief. A hot bath helped for a little while but the pain returned. Ditto the heating pad. I couldn’t find a comfortable position to lay in and sleep escaped me.

My body is tired and so is my mind. I’m tired of feeling like I’m failing in every area of my life. Today I was reduced to picking my son up from school in my pajamas because I couldn’t be bothered to get dressed. Thankfully it looks more like a sweatsuit than pajamas, however it was the first thing he commented on when he got in the car. I think I might have brushed my teeth and hair today but I can’t be sure. When we got home, I cuddled up to my heating pad and left him to do his homework on his own. I think he had a good day at school but I didn’t feel much like playing 20 questions and he seemed fine. I’m clearly Mother of the Year. I was in bed the rest of the night until about an hour ago when my boyfriend came to bed. He’s another one I feel like I’m failing. He deserves someone who is actually normal. Someone who gets the occasional cold or flu but is healthy for the most part. Tonight we talked for about 15 minutes while laying in bed and we didn’t even see each others face. I couldn’t tell you what he and my son had for dinner or if they even ate. I can tell you that he finished the laundry as I see it all laid out nicely over the back of the couch. Laundry that was in the washer and dryer all day that I couldn’t be bothered to do. I can’t tell you the last time I had a normal conversation with either of my parents. All phone calls and visits seem to revolve around poor health-either mine or theirs. I’m failing myself on so many levels too. I’ve tried to be kinder to myself but as you know, that’s not always easy. I was enrolled in an online algebra class and held a steady “D” average for the first four weeks of class but had to drop it because of health issues. Math is the only thing holding me back from getting a college degree. I’m stuck in a job that pays well and is secure but after almost ten years I’m burnt out and would like to have a different career. I can’t change jobs even if I could find one that paid as well because I obviously need the medical benefits as well as the FMLA.

My body is tired and so is my mind. There’s a low grade depression that accompanies chronic pain. There are days when I wish I had an on-call counselor to talk me through it all-to whisper reassuring words in my ear. Through my medical insurance at work there is a health program wherein if we took a health assessment we will have slightly lower rates for six months. I need money like everyone else so I took the health assessment. Afterwards, I had to fill out an online survey, which I did as part of the agreement to lower my rates. Little did I know, that doing so would give me the opportunity to have my very own health coach. She’s never bothered to call me but did send me an email asking the same health assessment questions and a few more questions about my medical history. I was really looking for help so I told her about my overlapping conditions and how much pain I am in on a daily basis, my low grade depression, and that I fell off the non-smoking wagon although I try and do better each day. Out of all the things I told her I needed help with or needed help dealing with, which do you think she zeroed in on? Smoking. Have I set a date to quit. I was so disgusted with her I didn’t even reply. I wanted to write back and tell her that if I could get rid of or lower the frequency of my other issues, perhaps I wouldn’t find the need to smoke. I give up. Yes, smoking is bad. It’s especially bad for those with IC issues, however some days it’s the only way to make it through the day.

My body is tired and so is my mind. I’m sure I have adrenal fatigue. Having chronic pain has really taken it’s toll on both my body and mind. I rarely feel rested. I crave sugar all the damn time-probably as a quick pick me up since I can’t have caffeine. I’m worn out. Perhaps my body would react differently if it could catch a break. There’s no down time. Even the one day last month when I felt really good part of me was worrying about what the next minute, next hour, next day would bring. I know I wasn’t always this way. I used to be pretty happy go lucky with the occasional migraine thrown in to keep my honest. Then gradually things started progressing to where I am today. I can’t even contribute my diminished health to old age as I’m only 38. I’m not sure I can handle old age if my body is already beginning to give up on me.

My body is tired and so is my mind. I’m tired of of being on this roller coaster of pain. It makes me want to stomp my feet and yell ‘It’s not fair!’. It really isn’t fair. It’s not fair that in the past month alone I’ve had one really good no pain at all day. It’s not fair that once I get one issue under control another issue appears. It’s not fair that my family is “short changed” due my health issues. It’s not fair that I’m complaining like I am as I know there are those who are worse off than I am. People with a lot more pain and many, many more issues. People who have suffered from chronic pain for many, many more years than I have. People who even perhaps have terminal illness. My heart goes out to you. It really does.

My body is tired and so is my mind…

Chronic pain-TMJ Awareness Month

November is jaw joints awareness month. You may be asking yourself, is Ms. Peebody just adding random posts to her blog? What does TMJ have to do with IC? TMJ is pain in the jaw and interstitial cystitis is pain in the bladder, how are the two related? Directly, the two are not related. Indirectly, they are. TMJ is one of eight overlapping medical conditions that often occur with these medical conditions:  chronic fatigue syndrome, chronic headache or migraine, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome and vulvodynia. Although research is ongoing, we still do not have an answer as to why any combination of these eight conditions often effect a person.Personally, I suffer from IC, IBS, migraines and TMJ.

I had adult braces because I never liked my jack-o-lantern smile. I’ve had them off for less than a year and love my smile. I chose to get adult braces simply from a vanity standpoint but I have noticed that I have fewer “temple headaches” now. “Temple headaches” is what I call my headaches when the pain feels like my temple will explode. It’s my unprofessional phrase but you can borrow it 🙂 . The decrease in headaches after I had braces was just a bonus. I knew going into it that it would not cure TMJ. In fact, the good people at  TMJ.org, do not recommend surgical treatment as there isn’t enough research to support the effectiveness of those procedures.

For those of you just passing through who are fortunate enough not to suffer from TMJ or perhaps do not know the signs of it, here they are:

  • pain in the jaw muscles
  • pain in the neck and shoulders
  • chronic headaches
  • jaw muscle stiffness
  • limited movement or locking of the jaw
  • ear pain, pressure
  • painful clicking, popping or grating in the jaw joint when opening or closing the mouth
  • a bite that feels “off”

I’ve had TMJ flare ups that were so bad I could barely open my mouth. Although those closest to me thought this was a wonderful side effect, I had to go to urgent care to get anti inflammatory medication. For years, my mother has had the painful clicking, popping or grating that is described above. It can be entertaining to sit at the dinner table with her when there are new people around because as she’s chewing, they’re looking around trying to figure out where that awful noise is coming from. The noise is loud. 

There are many possible causes for TMJ including arthritis, injury to the jaw, infections and autoimmune disease. The one possible cause that interests me the most is autoimmune disease because that’s the only thing that links TMJ with IC. I wonder if one day scientist will discover that the eight overlapping autoimmune diseases are actually one larger disease. I already have four of the eight autoimmune diseases and I’m only 38. The chances of developing any or all of the other four diseases in this overlapping condition group is likely, according to the research I’ve done. I hope and pray researchers are using their funds well and that we will see a better diagnosis or perhaps even a cure for these autoimmune diseases in our lifetime.

This Trick Isn’t a Treat at All

He Mocks Me

Halloween used to be  one of my favorite holidays. Not because of the costumes but because of the candy! Candy corn, M&M’s, Reese’s Peanut Butter cups, etc. Yummy. It was the only holiday that I was happy to see the stores start stocking their shelves for earlier and earlier each year.

Big or small I enjoyed them all...

This year, I feel a bit differently about Halloween. In fact, I have a sense of mourning. I won’t be able to partake of the usual chocolate goodies that I loved so much. Chocolate is bad for IC patients and somehow that fact seems almost personal. As I’ve mentioned in an earlier post, M&M’s used to be my comfort food. Specifically, plain M&M’s. A couple of hundred handfuls of chocolaty goodness used to make my day that much more special. I was known to be a lover of these little chocolaty goodies by family and friends. When they found out that chocolate would no longer be a part of my diet they gasped and the first thing they mentioned was M&M’s.Of all the things I’ve had to give up over the past 2-3 years, soda and chocolate are what I miss the most. Chocolate was yummy. Chocolate was comforting. Chocolate was my friend.

I miss you, dear friends.

Candy corn is also out. Or at least as much as I used to eat. Sugar isn’t good for the bladder either. I especially liked candy corn at this time of year because it was probably the only time of year that it was fresh but also because in recent year it came in a variety of flavors. Yes. Even.Chocolate. Flavor.

When I found out chocolate was no longer allowed as part of my recommended daily allowance, I began searching the Internet for alternatives. I found it funny that when I Googled ‘What are the best alternatives to chocolate’ that I found a site where a lady was asking the same question I was and her post received 63 responses, most detailing not alternatives but how to cut down on the intake of chocolate. I did come across an alternative called carob. I had a difficult time finding it in stores though. I eventually found it at Whole Foods. I made carob cookies from the cookbook ‘A Taste of the Good Life’. The cookies were light and fluffy and tasted good. I couldn’t tell they weren’t made from chocolate. Carob is really dark brown, almost black in color so the cookies didn’t look as appetizing as I’d have hoped but they were definitely tasty. Today my day off and I’m going to celebrate by making some goodies with carob. I have to do what I have to do. This girl needs some chocolate! Enjoy your Halloween and please, have some M&M’s for me!

Mom, Karate’s Not Your Thing

Yeah, I wanted to be a bad ass.

When I met my boyfriend 18 months ago, he was going to gym everyday and he looked great. I was not going to the gym because I was lazy busy.  Last August, my boyfriend and I decided we needed to work out as a family. About that time, I was speaking with someone at work who mentioned he’s a black belt in karate and teaches karate for the whole family on Tuesday and Thursday nights not too far from where I lived. Perfect. Quality time with the family while sneaking in some exercise for my son.

We started class at the same time. My boyfriend and son really enjoyed it. Me? Not so much. I enjoyed the warm up time and the stretching but learning all the different steps and such were just too much for me. At work, almost every thing I do is monitored in one way or the other. I don’t want to be monitored on my off time. Also, I missed a lot of classes because I was ill. I hadn’t yet been diagnosed with IC and the movements and stretching I was doing were making my pelvic floor spasm. Going twice a week added to the flare ups and irritation. In addition, I felt ridiculous bowing upon entering and exiting the karate room-also known as the Dojo. Yelling key-yah when I was doing a particularly  aggressive movement didn’t feel natural and I doubted it ever would. Saying ‘Usss” when I agreed with something the leader said always made me want to giggle.

I missed the entire month of October due to being sick and also due to a trip to Disneyland. I attended the first class of the month at the beginning of November. I’d told my boyfriend the night before that I was going to go back and try it again but I figured I would end up quitting the class as both he and my son had moved on to the next belt. I’m a bit competitive… sick or not. I struggled through the class, having to practice with my boyfriend and this teenage girl who beat me up hit hard. By the end of class, I knew I wouldn’t return as a class member. On the way home that night, my son says to me without hesitation from the backseat ‘Mom, no offense, but I don’t think karate’s your thing. You’re just not  catching on.” All I could do is laugh and tell him that I was thinking the exact same thing. He tried to console me by telling me I could play soccer but I assured him that I was bit too old for soccer. My son still goes every Tuesday and Thursday and has been steadily making his way up to new belts-which makes me proud. He’s been going all by himself as my boyfriend started a new job recently and works too late at night to attend.

All this to say, I haven’t done anything productive over the last year with any consistency in regards to working out. I’ve tried Zumba which is a lot of fun and non repetitive. Belly dancing is a lot of fun and I must admit a lot more difficult than you would think. Jillian Michaels was intense and she likes to do a lot of abdominal work which worked against me for obvious reasons. Walking was alright but a bit dull. Most every time I would get into a routine, I would get sick again. I sat in at my son’s karate class on Thursday. Although I don’t want to do that particular activity again, I realized that I do miss being physically active. My body is not the way I want it. I fully realize that it may never be the way I want it to be as I’m now closer to 40 years old than 20 years old but I can at least make an effort to feel and look better. On the IC Network website, I came across a yoga video taped by a yoga instructor who actually as IC herself. It came highly recommended and unfortunately was sold out. Amazon had it though. It was a bit pricey at about $30, and I really had to assess whether or not it would be worth it. I decided to give it a try and now can hardly wait until it arrives in the mail. It will do my soul good to be moving in ways that are helpful to my body instead of hurtful. I’ll let you know.

Let's hope I can do this!

A Good Night’s Sleep

I had a hydrotension done two weeks ago. Since then, I had not only been in pain but also unable to get a good night’s sleep. I rested to be sure. I laid around reading or watching t.v.. Even caught a movie-The Help-if you haven’t seen it, do so now! It’s as good or better than the book. Anyway, I don’t know if it was the pain or the pills but my whole sleeping pattern was off. I would go to be tired at around 10 pm but still be awake at 11 pm. Tired of tossing and turning, I’d get up and try to trick my mind into sleep mode by doing something relaxing. Unfortunately, sleep wouldn’t find me until about 2 am which meant I would sleep until about 10 am. I’m not a morning person so this would normally be cause for a personal celebration but night after night it was wrecking havoc on my body. Finally, last night, sleep found me at about 11 pm and kept me until about 6am. I was tired when I woke up but I was pain free. Yay! So this makes me wonder: If I had been able to get a good nights sleep in the past two weeks, would my pain had subsided earlier? Is may lack of pain today a result of a good nights sleep or merely happenstance?

Today I dropped my son off at school, hit the gluten-free sale at Sprouts, and came home. I put dinner in the Crock Pot, Jamaican Pumpkin Soup, and am making a Pumpkin Mousse with the remainder of the pumpkin. Next? I will take a break and enjoy this beautiful overcast day we’re having in Az. Yes, I’m declaring the rest of my day as a day of rest. I finally feel good and want to enjoy it by doing things I enjoy like reading or writing, or finally getting my outline done for Nanowrimo. I refuse to overdue it today, a mistake I’ve made in the past when I’ve suddenly felt better.

So tell me, what do you do to sleep better when you’re in pain? And what do you do to celebrate when the pain is finally gone, even if just for a day?

Lack of Funding for Overlapping Medical Conditions

Two weeks ago, I was worried about a few things that were coming up. One of the big things was the hydrodistintion that I had done a week ago Friday. The usual and unhealthy way I handle stress is to keep it locked up inside of me. The irritating way my body lets me know it’s had enough is to rebel. This was the case two weeks ago when out of nowhere my IBS acted up. When I first diagnosed with IBS four years ago, it was irritating and inconvenient. Having suffered for the past several years with what I now know is Interstitial Cystitis, the IBS symptoms I experienced seemed like nothing compared to the pain of IC. I’m taking medication to help control IBS and honestly, all thoughts of IBS took a backseat to dealing with IC. While dealing with the symptoms of IBS two weeks ago while dealing with the pain of IC, I became curious to know how common it is to have more than one of these types of diseases. It turns out, it’s a lot more common than I thought. There are millions of Americans suffer from chronic fatigue syndrome, endometriosis, fibromyalgia, interstitial cystitis, irritable bowel syndrome, temporomandibular disorders, and vulvodynia and TMJ. Those of us with more than one of these diseases are known to have what is called overlapping or cormorbid conditions. There are coalitions formed to help gain funding for these diseases and to find out why they so commonly overlap. Here are a few organizations that you can look at if you wish http://www.endwomenspain.org/ and  http://www.overlappingconditions.org/ and http://nwhn.org/overlapping-pain-conditions-women-pain-need-more

According to the research I’ve done on the Internet, doctors are educated to treat the symptoms, not the patient. If the doctor cannot determine what the problem is, there’s a good chance you will be dismissed without a diagnosis but sometimes with the belief of the doctor saying ‘it’s all in your head’-this is a personal favorite saying of mine as I’ve heard it from a few doctors over the past few years. The problem with doctors who only treat the symptoms instead of looking at the patient as a human being is similar to the person who is book smart but not street smart. A good doctor should, in my opinion, be able to look at the symptoms and the patient as a whole person.

Another issue with these eight commonly overlapping diseases is knowledge and awareness of the diseases themselves. There is so little known about each of these diseases and my personal opinion for this is because the eight diseases mainly effect women. The National Women’s Health Network reported in April of 2011 that the average funds allocated for researching these conditions through the National Institute of Health is…$1.33 per affected woman, per year. Yes, that’s right $1.33. Funds allocated for these predominantly female conditions are equivalent to just a penny over the price of 3 postage stamps, 24 cents over the price for a movie rental at Red Box, and over a dollar less than most restaurants charge for soda pop. The National Woman’s Health Network estimates that over $80 billion is spent in health care costs regarding these conditions. Combined, chronic pain is as prevalent as cancer, heart disease and diabetes. The National Institute of Health spends 96% less on chronic pain research. This is appalling to me. There is something we can do to change this. We can call or write our Congressman/woman (www.Congress.org ) to find specifics for your congressman/woman) and ask them to act on the policy recommendations listed under the Take Action section on the Overlapping Conditions Organizations website. They even have a template to send a letter if you’d prefer. The policy recommendations include: cost effective investment in research, education of health care professionals and expanding public awareness. As both women and victims of these conditions we need to stand up and be heard. We know our worth and we are worth so much more than a lousy $1.33 a year.

Please take a few minutes to watch this video called “Through the Maze: Women & Pain”

http://www.youtube.com/CECPW