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?

Chronic Illness and Depression

Statistics show that 1 out of 4 people suffer from mental illness. Stop and think about this for a second. In regards to family, this means that someone in your family probably has or has had a mental illness. If you broaden the scope to those outside of your family you know, it’s more than likely that one or more of your friends  or acquaintances has or has had a mental illness. Broaden the scope even more and probably more than one person you work with has had or is suffering from a mental illness. When I first read the statistics, I didn’t comprehend how large the percentage of the population that suffers from mental illness really is. Numbers have never been my strong point, When I broke it down like I did for you, I was flabbergasted. These statistics mean that mental illness is more common than heart disease, diabetes and cancer. 

For the purpose of this blog, I will focus on depression as it pertains to chronic illness, or chronic pain syndrome. For those of us with chronic illness’ the problem is twofold: We have not only the illness to deal with but the changing of our lives as we know it. Having a cold or the flu is irritating but on some level, we know it will run it’s course and go away. With a chronic illness, we don’t have that luxury. The pain may last for days, weeks, months or years or in some cases go into remission for an undetermined amount of time, We don’t have a lot of control of when the pain may or may not end. C-o-n-t-r-o-l. A seven letter word that’s so hard to grasp. I would love to have control over not only my illness’ but also the effects that it has on my daily life. I would love to make plans to do something I find fun and interesting and know that I will actually be able to follow through with the plans. The truth of the matter is, I can’t. So I don’t.

Having a chronic illness does not always lead to depression but it can and often does. Just like the chronic illness itself, depression can last for days, weeks, months and years, I have been depressed on several occasions, for several different reasons. Here are a few examples: I don’t feel well enough to go to work so I call in sick…again. I’m out of sick time so this is time without pay. I’ve tried to work out and usually feel good while working out but whatever it is I’m doing isn’t good for IC bodies and I feel the wrong kind of pain within hours. This has left me with a body that I’m not too appreciative of. I want to take my 10 year old to the park to kick the soccer ball around like I promised him I would that morning. I can’t follow through with it because when I made the promise I felt fine, when the time came to follow through I was in pain-this is a big reason I don’t make plans. I have been sick for weeks at a time, forgetting what it’s like to have a “normal” day. I have been to see doctors who throw their hands up in the air and tell me they haven’t the slightest clue what’s wrong with me but most likely whatever it is, it’s all in my head. I have been fortunate in that these minor bouts with depression don’t last longer than a few days to a week. However, I’ve known people with chronic illness’ whose depression has lasted for much longer or is ongoing,

One of the biggest triggers of depression for me is isolation. Many people can empathize with someone because they have the cold or the flu, Even a broken bone or obvious injury can be a conversation starter with those who have suffered the same or similar injury. But a chronic illness is difficult because it’s not usually noticeable to others, I can try and explain to others what it is I’m feeling and they may try and understand but they don’t. They can’t. For the past 5 or 6 years, I’ve had this burning between my pubic bone and belly button. I’ve felt like I’m on fire from the inside out. My trips to the bathroom both day and night are plentiful. Not many people can relate to that. After all this time I finally have a diagnosis of IC. While it’s great that I finally know what the problem is I am still alone in the battle for now. Over 1 million people have IC, but I have yet to meet one person who admits to suffering from it.

Another trigger for depression is what I like to call the spiral effect. I wake up in the morning and don’t feel well enough to get out of bed. I call in sick, as mentioned earlier, and have to take time off without pay, I medicate. I sleep. I wake up and see how I’m feeling, I take more pills and get some rest. I wake up the next day and may very well feel better but I’m so ‘hungover’ from my medicine that I can’t get up and go to work which leads to more time off without pay. Which then leads to more depression when I get my paycheck and I’m short hours, These medications I speak of as well as the visits to see the specialist aren’t cheap so that adds to the depression. One or two days out sick a week can make quite a dent in my savings account.

The change I’ve had to make in my diet is also a stresser, I have been gluten-free for two and half years, thinking the undiagnosed pain was a perhaps a food allergy. My pain did go away for about 14 months without the gluten. When it came back is when I headed back to the doctor. My diet was already limited-no wheat, rye, barley or oats. It seems like just when I had the gluten-free way of life and substitutions down pat, I have to also take away tomatoes, salad dressings, some fruits, soda and chocolate. I remember thinking What is there to live for now? The irony of the soda and the chocolate being bad for IC was those were the comfort foods I would turn to when I was having a flare up (before I knew I had IC) and although I thought I was comforting myself, I was actually harming myself more. So there have been more issues with my diet-more restrictions on my life-than I ever wanted. I don’t want to live without soda and chocolate but I have to or I will keep getting worse. The only part of my diet that I have control over is to NOT eat the things that harm me.

I find that I have a bit of shame and/or embarrassment with having Interstitial Cystitis. I know I have no control over the disease nor how my body reacts to it. My shame or embarrassment comes when I sound like a broken record to those closest to me who ask how I’m feeling. I’m grateful, oohhh sooo grateful that my boyfriend is the man he is. He always asks me how I’m feeling and I love him for being so kind and caring. It’s difficult though, to have to say day after day during a flare up that no, I don’t feel any better. I find it ridiculous that my ten year old asks me how I’m doing or prefaces a request with ‘Mom, if you’re feeling good after school can we… (fill in simple desire of a ten year old here)’. Mom’s health should not be a concern of a boy who is ten. My dad, bless his heart, doesn’t understand IC at all. He doesn’t understand that there isn’t a cure and that everything I’m trying is only a band-aid. When he comes to my house and see’s that I have 5-6 medication bottles on the counter, he shakes his head and asks me when it’s going to stop. He’s an obese diabetic who is insulin dependent and has several other health issues that he takes medication for. I’d like to ask him when his medicinal madness is going to stop, but I don’t. I’m embarrassed that at 38 years old, I have this issue. I’ve tried to embrace it and move on as they say, but hiding my pain (lying about how I feel) only makes it worse.

I’ve found that the only control I have over IC is to reach out and try to find others who have it or others who suffer from chronic pain. I started this blog to help others but to also help myself. It’s a great sounding board. I read other peoples blogs who have IC and/or other chronic pain and I find myself agreeing and sympathizing with them. To further help myself feel less isolated, I searched the Internet for support groups in my area. There was one, One. Over a million people suffer from IC and I realize that not all of them live in Az but only one support group in my area? And it had meetings every other week during the day when I am at work. I searched meetup,com and didn’t much like what i saw there either. After giving it some thought, I really felt like the biggest trigger I have is isolation and maybe more people have the same issue so I did something totally out of character for me and started a meetup group of my own for those with IC and other chronic issues. Within two weeks I had 11 members (a few who also have IC Yay! Finally!) and most everyone said the same thing: I’ve been looking for months for a group where other people could understand me and what I’m going through,

I am a bit depressed today. I have been all week actually. I know it will pass eventually. I just have to take it day by day and try and be kind to myself. Please be kind to yourself today.

Uphill Bladder…I Mean Battle

Hi, my name is Renae and I have Interstitial Cystitis (IC) (Hi Renae!)

I began this blog in July, intending to journal everyday of my recovery. After 5 years of suffering I finally had a diagnosis, an actual diagnosis that made sense! My gynecologist who diagnosed me started me on Elmiron. I was sure that I would make a speedy recovery with possibly a Flare Up here and there. That was mistake #1.Elmiron can take 3-6 months to have noticeable results. Mistake #2 was thinking Elmiron was the only medication and treatment I was going to need. I  know everyone is different and respond’s differently to medication and treatment. If, in your situation Elmiron is all it takes to make your bladder happy than I am more than happy for you. For me, this isn’t the case. By the way, Elmiron can be expensive, even with insurance. I went to the Elmiron website and downloaded a coupon that saved me alot of money,

In August, I went to see a Urologist who specializes in IC. I don’t think I could have made an appointment with a nicer or wiser doctor than Dr. L. He asked important questions and actually listened to my answers. He gave several suggestions for treatment. The suggestions ran the gammet from taking a prescription anti-histamine at night called hydrooxyzine, which he highly recommended to removing the bladder, which he was dead set against (I was very glad of the latter as I’d like to keep all of my remaining innards intact, thank you very much). I started taking the anti-histamine pills at night that work to reduce the mast cells that form in my bladder and about a week later I started Bladder Installations. A Bladder Installation is when a solution is pushed into the bladder through a catheter. The cocktail that was used for me included sodium bicarbonate, lidocaine and Elmiron. Afterwards, I have to hold the cocktail solution in my bladder for as long as I can. Are these treatments as gross and demoralizing as they sound? Actually, no. It’s a 10 minute process in the office that is performed by the nurse. It takes me longer to drive to the dr’s office than it does for treatment. I finished my final treatment of six this past Monday. Am I miraculously recovered? No. I am, as a matter of fact, in pain right now. I have had a few days here and there where I feel great though. I go for a follow-up visit with Dr. L tomorrow. I’ll admit that I’m sort of afraid of what the next course of action will be. I don’t suffer from latrophobia but I’m sure the bladder installations were the least invasive measures I recall him talking about. I remember removing the bladder as not only being the most invasive but the one treatment that I had to ask him to stop talking about for a moment while I put my head between my legs so I wouldn’t pass out. Normally, that type of reaction only happens when I’m in a room where childbirth is being discussed. That dizziness/I’m going to pass out if you don’t shut up feeling began in the sixth grade during sex ed while the teacher explained the birthing process and has stayed with me through the years. Seriously, I’m surprised I even chose to have a baby myself. Anyway, tomorrow’s appointment is making me a bit anxious.

Another thing worth mentioning at this point is my diet. When I was diagnosed by my gynecologist in July, she handed me a print out with pictures of food and what to avoid. I’d say after further exploration, that the print out must have been a rough draft. I’m already gluten-free and have been for over two years. According to the print out I received from Dr C., I would only have to eliminate a few more things like tomatoes, soda and chocolate. I’ve never been a huge fan of tomatoes, but come on, chocolate AND soda are no-no’s too? Of all the things I’ve given up over the past 2-3 years, I miss soda the most. In fact, before I found out that I had IC and I was having a painful day, I would often stop at the corner store and get a soda and M&M’s as a comfort food. It turns out, what I was using to comfort myself was actually hurting me more. This disease with all of its quirks and what-works-for-one-person-may-or-may-not-work-for-another baffles me at times. I know several people who are gluten-free or who have family members that are so they are at least familiar with what is gluten-free and what is not. Other people choose to go on what I like to call a “I’m gluten-free because the last fad diet I was on didn’t work for me” diet. I am gluten-free out of necessity, they are gluten-free out of choice. The one good thing that has come from their choice is that Celiac’s, Crohn’s Disease,and gluten intolerance has come into the spotlight and there are several more gluten-free items in both grocery stores and at restaurants than there were even two years ago when I went gluten-free. Yay! This has made shopping and going out to eat a bit easier. However, I have yet to see one item in the grocery store marked “IC Friendly” just as I have yet to meet another person who has IC, even though statistics are that over a million people have IC. I bought a cookbook called “A Taste of the Good Life” by Bev Laumann from amazon. I’ve decided that until I go into remission, which i have to believe that I someday will, I’m only cooking recipes from this cookbook. Going out to eat is expensive for me, not only financially but physically. Most every time I go out to eat, I’m in pain within the next twelve hours. I’m hoping that by using this cookbook for a month I will train my mind to remember the ingredients so that when and if I go out to eat again, I can do so without harming my bladder.

So I’ve mentioned Elmiron, which I take an hour before every meal along with generic Librax for my IBS. I’ve also mentioned that I take a prescription antihistamine called hydroxyzine before bedtime. Have I mentioned the wonderful medication called Uribel? Come closer, let me tell you about it. It’s the little blue pill for IC. Yes, it’s a pill that enables me to have a normal sex life. One of those blue pills taken about 10 minutes before the party begins and I’m feeling no pain. Really?  you ask. Yes, really. I was at the point where I felt sex was a punishment of sorts. I have no complaints about my partner, the pain I was feeling during and after all had to do with my body. Every time I had sex, my vagina would have muscle spasms that lasted a really, really long time. Okay, you can back up now. The only side effect from Uribel that I’ve experienced is that it tints my urine blue the next day. This has caused me to refer to the pill as “The Smurfer”. If that’s the only side effect I suffer from the pill in okay with it. Color me blue 🙂