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.

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.

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!

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

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.