Archive for January, 2008

Menstrual Cycles

Posted in Daily issues on January 23, 2008 by icangel

For all of us who have IC, our menstrual cycles can be a complete nightmare.  As I wait for this months visit into hell to begin, I feel that these heparin treatments are going to make it that much worse.  I remember the days not to long ago that I was on Lupron.  The only good side effect of that hormone, no cycles.  Everything else that that hormone brought upon me was too much to deal with for a 28 year old woman.  Constant hot flashes, an attitude that could rival Dr. jeckl and Mr, Hyde ,  and the worst of them all a slowing of my metabolism to an almost stop.  I felt like I went to sleep one night at 128 pounds and woke up at…a higher weight.  It happened so fast.  I thought when I got off them, my metabolism would speed up, if not return to normal and the weight would just melt off.  Well I was sadly mistaken.    And the one person I blame…my gyno.  I made sure to ask her if I would gain weight.  Her reply?? No, hormones increase your appetite, that’s why people gain weight.  Well I didn’t eat a drop more than I usually do and infact ate less and better.  Dr’s never give you the full story and I for one am sick of it.  I owe my first born to my pain Doc, but when it comes to my menstrual cycle, IV pain killers barely take the edge off.  I remember one month where it too the ER 3 separate doses of IV Dilaudid to dull the pain. And unfortunately a trip to the ER every month is not doable, and can be more of a pain than a help.  Its like paying thousands of dollars for relief from pain you would want to slit your wrists to stop(only an example of how bad it gets, as I couldn’t ever do that, unless I was left in constant extreme pain without  help.  Although that does raise the age old question of why the heck does the ER have to charge so much?? Maybe another day in another blog…

So, what is one to do when the pain gets that bad and the only alternative is a state of menopause before the age of 30? That is what I’m struggling with right now.  I’m certainly not vein.  I don’t need the perfect body but would of course would like to keep myself as close as possible to my usual weight.  I try to exersize whenever possible and love to hike on a few trails where I live, I also do love going to the gym but I can usually only do these things for a week or two straight and at the most a month before I have to take too many days off in a row, never long enough to get back to as fit as I was before the nasty disgusting excuse for a helpful medication…Lupron.

  Ughhh…I think today is the day it will start…wish me luck to make it though…

Why is it called a men-strual cycle? Just a little bit to think about.

Mind, Body and Spirit

Posted in Body and Spirirt, Mind on January 18, 2008 by icangel

There has been alot of modern day research on a belief which has with-stud thousand of years.  Yes, the dreaded subject for many…spirituality.   Why do people dread talking about it? I think the simple PC rule of politics, religion and money has alot to do with it.  But first lets put the word religion to the side.  Religion and spirituality have no place together.  To me religion is a mass belief, whether that belief is Christian, Catholic, Buddhist, Pagan…there are so many religions that sometimes its hard to keep track.  But Spirituality, by my own definition is own private relationship between the soul, the physical and he world.  It doesn’t always have to do with a any religious guidelines or books.  Not that there is anything wrong with that at all.  I try to accept people for who they are, not what they believe.  I could meet a christian who is cruel and cold and a pagan who is accepting and kind and I would prefer to spend my time with the pagan. In the end someones religious beliefs don’t outweigh who they really are.  Well…accept for those who don’t live within light and love… You know what I mean.. those who follow…bad things.  So now that we’ve gotten that out of the way, I’ll explain what the mind, body connection means to me.  But a fair warning…If you believe that if its not stated in the Bible its dark and evil, your reading the wrong blog.  Its completely okay, but I don’t want to offend you.  but if you believe there are things, that are positive and good, not necessarily talked about in the Catholic or Christian church, please read on. This is only my view, the way I have lived for over a decade. And something that has helped me cope with a chronic condition.

In the recent years the majority of society has begun to open up to ideas that once seemed unspeakable. The idea that there is energy not only in personal world around us, but in the universe as a whole.  That we ourselves are made up of an energy that links us not only to the endless universe, but each-other. That once this energy that flows within us becomes unbalanced, we ourselves become unbalanced.  How about an example…when someone is spending more time on acquiring the physical they are not spending enough time on the inner being.  When someone is eating too much junk-food instead of eating the foods given by the earth, it affects the way they view themselves thus changing the spiritual being within.  The aim of living a fully balanced life, accepting the energy flowing around and within us, eating alot of what the earth provides us creates balance in our all over lives.  Much like yin and yang.  It is the same aspect behind the now popular exercises yoga and Thi chi.  Getting in touch with what your inner being in saying…sometimes screaming. 

I cant make the analysis that anyphysical ailment we experience is due to an imbalance within our being.  That for me would enter into the realm of my beliefs or religion and that is not my aim in this blog.  But I do believe any physical ailment can improve once we connect our mind, body and spirit and live in harmony with the world around us.  But on the same note, I dont believe that all medical conditions can be healed by universal energy, or Chi(energy which is thought to be the life force),like many people which believe in the “new age” religions(which aren’t really new age…more like ancient ways)  I believe in miracles, but not everyone gets them…that’s why there miracles. 

Then if there is no way to “cure” these conditions, why bother? Well, it causes one to look at the world in a different light. A more positive light.  Removing that which is only weighing us down.  North America is one of the only continents that has been Leary of accepting this different way of living.  I can certainly understand fear of change.  We all know it to some extent.  But making simple little changes in your day to day life can improve your all around being, and that’s a change we shouldn’t fear.  So how do we connect  all these different aspect of who we are?

Changing our eating habits can have a profound effect on the way we see ourselves and our world.  Eating things that have been provided by the earth itself.  By the same energy which flows through us.  Not only eating the earths provisions, but trying to eliminate toxins and antibiotics in our food which serves to positive purpose within our body.  Mother nature had provided us with game.  Chickens, fish and beef.  Although I am not a vegetarian, beef can be heavy and weigh us down.  It also can contain anti biotics and nitrates.  Reducing the amount of beef we eat and replacing it with all natural chicken and fish, whole grains and veggies can improve our health which improves the way we think about ourselves  and the earth which gives us a better connection to our inner being.  I’m not saying throw all the food in the house out, that’s wasteful.  But small changes like picking up a grain or organic veggie for dinner.  I also don’t think indulging in a good old hamburger and fries at the local diner is a bad thing.  We are human and to eliminate all indulgences would be ridiculous and almost near impossible. Even those of us who have to eat a certain diet, cheat once in a while.  There are also many natural teas and herbs that can benefit our body.  I will be posting those in another section.

Think about taking up some sort of exercise, even if its only low, low impact for only 5 or 10 minutes a day.  Great exercises which emphasize reaching beyond the physical are yoga, Thi chi, and belly dancing(which is very difficult for us with IC) I have done Thi Chi at times and I can guarantee that once you reach beyond the physical movements you can feel an actual physical energy.  A way to feel this energy without Thi Chi is to put your hands together and slowly pull them about 3 inches apart.  Once you fell the pressure between your two hands and resistance when you slowly move them towards each-other, move them out another few inches.  That is what is called Chi and with practice it gets stronger and more pronounced.  Now if you collect that energy and sweep it into yourself from your head to your toe, you will actually feel more physically energized.  This act is another mind, body and spirit connection. 

Mediation is a great way to expand what you see as your physical world.  It is also a great way to check in on the rest of your body.  By shutting of the phone and locking the door for even 5 minutes a day you can do a world of difference. Sometimes were so busy or pre occupied, the little pains our body gives us to get our attention get ignored or brushed to the side.  I will post a few meditations in a few of my next blogs. 

Finally realize were all human.  We all make mistakes, get stressed out and pick up bad habits.  We get sick too.  That doesn’t mean there is something so wrong with our mind, body and spirit connection that our body has forsaken us.  But making little changes, like a few I mentioned can help improve the way we think and feel about ourselves and the world around us thus making our pain not seem so overwhelming. 

I have integrated these things into my life, from which I believe I put myself into some natural short remissions.  But I do still take oral medications and use modern medical technology.  I think believing we will be cured by spiritual means is unrealistic and can lead to disappointment. It can lead people to never come to terms with a chronic condition, Which is a constant on going fight I have with one of my friends. Who believes if I dont wholly believe and hold onto the thought that I will be cured, I am playing a victims role and not accepting my condition.   These are ways to help us cope and connect with whats going on beyond the physical, not make us modern day miracles.  But with all that said there is nothing wrong with believing in miracles and hoping that somewhere out there is one for each of us.  I’m just not going to expect it.  I want  to spend more time making my life better, notonly dreaming of one.

#3

Posted in Heparin Installments on January 18, 2008 by icangel

Well, I don’t want to say the way the first installment made me feel was some kind of fluke, but it sure seems that way.  When my Dr came into the room today and asked me how I felt, I could see that he expected me to say-not very well- Like there is a pattern to these that he just hasn’t told me about.  He told me he’s not sure why the first one made me feel so good.  I may chalk it up to psychosomatics.  I think I just wanted it so badly that my brain refused to accept the pain signals my bladder sent.   I have after-all used that power of my brains persuasion to get into a sort of remission.  I used to go into them every other week when I was receiving my native American healing.  Because I’m so spiritual,  I will never say that there aren’t people in the world who can harvest the ancient healing energy our ancestors once used.  But I also cant discount the power of the brains persuasion.  But more on the mind, body and spirit connection later, back to my installation…

So, as I said, I have been feeling not quite my usual self.   I always have a tolerable burning pain in my abdomen even through the medication.  After all, opioid will never eliminate all the pain, only make it tolerable.  And I will admit the reason for these installations was because I seemed to be having flares everyday. But having a cath inserted through my urethra and into my bladder produces a pain when the lidocane wears off, that makes me want to scream foe mercy.  Over dramatic? I wish.  It doesn’t help that my DR, although compassionate has decided to make me his cath guinea pig…using the big one instead of the smaller one.  “lets see if she feels the difference between the thicker and thin one” Now, it is true that I usually dont mind exploring the truth and myths in what people say, especially when it comes to my own medical condition and beliefs, but when it comes to my urethra, if not just for the sake of fooling myself, give me the smallest cath you can find!  And because I;m going to pretend its all the caths fault as to why I’m feeling this way, I’m going to say there is a difference.  Hence why my first one(the pediatric cath) didn’t leave me in the same pain. 

But this one was definitely more uncomfortable than the first.  I had muscle spasms on my 30 minute drive home.  But once I did get home and turned to my best friend, the heating pad, things definitely calmed down.  I think I did find the secret to holding in the heparin for an astounding amount of time.  I usually schedule my appointment  right before or after  my med  time.  But I always save my breakthrough pain medication for after.  Today I went early to my app and had to wait 2 1/2 hours to take it! But it worked out perfectly.  Although at times it was painful to say the least I did everything I could do to hold it in on my own.  Which usually means logging onto the Internet and looking up anything that could distract me.   I just took it every 20 minuets, telling myself I would void at 2, then 2:20 and so on.  Until I could take my mediation.  Once I took it the pain subsided a bit and I held it forabout hour.  Then I took my breakthrough medication and held it for another hour…and by the time 6pm rolled around I had gone 4 1/2 hrs! Granted by the time I voided I felt like my bladder was going to come out with it.  But that pain subsided after about 10 minutes and didn’t re appear until almost 9pm. 

So for me that is the secret, hold it myself until I go mad and then sooth it with my meds.  Not taking it right before or after.  Unfortunately things did feel the same this morning as they have since the second day of my first treatment, but I’m trying to keep a good attitude in that its only my third one.  My doc days he wants to do 6 in a row.  I don’t know what happens after that, but I’m halfway through.  And I’ve decided that I will disregard his notion of impossibility, being unable to hold it in for 8 hours. He has to know once you tell someone somethings not possible, there thought eventually turns to beating the odds.  after all, 4 1/2 hours is a little more than half way.  And even if these don’t work(which I’m refusing to beieve right now) accomplishing some sort of goal you set for yourself has to count for something.  Even if I can never do it, when you have IC setting a goal, even if it seems ridiculous to others, is 1/2 the battle won!

Thank God for my pain management Dr!!! 

My favorite IC friendly foods

Posted in Food on January 17, 2008 by icangel

Food can play an important role in helping to control IC symptoms.  And although there are some foods that seem to be hard on the bladder for the majority, like acidic fruits, everyone is different.  A good idea is to start from scratch with the foods containing the least bladder irritants and slowly add different foods to find out which you cannot tolerate.  So before I list the good foods maybe I should list some of the foods that can cause a problem. 

Acidic fruits such as, oranges, apples, cantaloupe, pineapples, raspberries and cranberries.

foods which contain potassium, especially bananas, honey dew melon, avocados, Lima beans, broccoli, artichokes, soy beans, halibut and Salmon. 

Food which contain nitrates like ham, bacon, hot dogs, bologna, corned beef which is not homemade, most packaged lunch meats and some cattle raised beef.  Although may many foods can contain nitrates these foods can contain large amounts.

Dairy:aged cheese, sour cream and yogurt

veggies:fava beans, Lima beans, onions, tofu and soy based foods

Breads: sourdough and Rye

Meats: anything canned and processed, anchovies

caffeine and acidic drinks like soda, coffee, tea, wine beer and fruit juice

most spices and seasoning except garlic and herbs.

Chocolate

Because additives, antibiotics found in meat, and processed foods can irritate the bladder, it is important that anyone with IC eat as organic as possible.  Ii have even found that I cant tolerate store bought tomatoes but can eat my own garden grown tomatoes in small amounts.  Its all trial and error.  But eating organic food is an all around health benefit regardless of IC or not.

Some of my favorite foods are

Quinua(my ultimate favorite grain that is so healthy you dont even have to have a side dish) whole grain pasta, whole grain cuscous and white rice.  On occasion long grain brown rice has been okay for my bladder.

I’ve grown to really love chicken, especially with olive oil garlic and thyme.  There is also an almond flour that is so awesome as a crust on the chicken

Mt favorite veggies are green beans in a garlic olive oil sauce or with almond, cucumbers and carrots.  A great sweet side is to saute the carrots in margarine or butter and brown sugar.  It really helps when that chocolate craving hits, and not as bad!

I tend to love dessert probably a little more than I should:) My favorite is homemade wheat crepes with blueberry sauce(ground blueberries cooked down with a little sugar or honey and pushed through a sieve) also carrot cake, angel food cake with blueberries and oatmeal cookies.  I really love frozen yogurt and although yogurt can bother the bladder, frozen yogurt is more tolerable. 

These are only a few foods I have found that don’t bother my bladder.  As I said everyone is different and you may be able to tolerate something I cant. 

There are a few books out there that contain more in depth lists of good foods and foods that arent so good.  I’ll try and post them later as I’ve loaned them out to my father.

Pelvic Floor dysfunction

Posted in common medical conditions with IC on January 17, 2008 by icangel

*Note. I am not a medical professional.  Ant description of medical conditions is from my own experiences and past understanding of reasrch I’ve done as an IC patient. This blog is not ment to take the place of your Dr.s diagnosis or advice. 

The bladder is supported by a muscle called the pelvic floor muscle.  When a problem occurs with that muscle, a simple thing like coughing can cause leakage.   Voiding the bladder is abled by the relaxation of the pelvic floor muscle. 

Many with IC develop a problem with this muscle.  In some cases when the bladder voids, the initial stream of urine can be held back or very slow and thin.  This is due to too much tension with the pelvic floor muscle.  The opposite can happen with the inability to hold the muscle closed, causing the urine to void before making it to the bathroom. 

PFD can cause pain, urgency, problems with sexual intercourse or arousal and retension.  Pelvic floor dysfunction can be diagnosed by a professional trained in PFD.  This is usually done with an examination using the DRs hands or special instruments if the DRs examination proves too painful.  Treating PFD in individuals with IC can improve urination and sexual arousal with less pain.  The goal of treatments is to relax the muscle, reliving tension.  Good posture to relieve pressure on the bladder, Hot baths, and stretching exercises can help achieve that goal.  In some cases a low dose relaxant such as Valium can be used.   For more information and an in depth look at PFD with IC visit www.ichelp.org

Endometriosis and IBS

Posted in common medical conditions with IC on January 17, 2008 by icangel

*I am not a medical professional.  Any discription of medical conditions, diagnosis and treatment are from my own experiences and past reseach as an IC patient.  It is not ment to replace the advice or explinations from your Dr. 

Although there is no current concrete explanations on how someone gets IC, because there seem to be many symptoms not just stemming from the bladder and urethra, IC is seen by some as not being one but many diseases.  Some even believe it is a possible auto-immune condition in which the body attacks the bladder.   This may be why those with IC are more apt to develop other medical problems. Not everyone with IC has developed another condition, it is only more commonwith IC for some reason.   But until greater strides are made in the research and cure for IC, it is all just debate for now. 

Some very common medical conditions which can develop in someone with IC are Endometriosis and IBS. 

Endemitriosis occurs when the lining in the urerous begins to grow on outside abdominal organs instead of the uterus.  During a menstraul cycle the lining  is shed if not pregnant. In endomertiosis the growth of the lining on other organs does the same during a normal menstrual cycle.  This growing, breaking down and bleeding outside of the uterus can cause severe pain.  Scar tissue can also be formed making it difficult to get pregnant.  In some cases the growths may even effect the organs normal functioning.  Professionals are unsure of the causes of endometriosis, but know estrogen plays a large part.  Thus why it is developed in the years before menopause.  Normally the immune system would destroy any uteran lining found outside the uterous, which is why professionals believe someone who has endometriosis may have problems with there immune system. Diagnosis is usually done by performing a laperscopy to view the inside of the abdomen.  Because there is no cure for endometriosis, hormones such as deptovera and lupron can help keep symptoms under control.  In some cases the growths can be lasered off.  For more information visit www.EndoFacts.com

IBS is an intestinal problem that can cause pain, bloating, constipation and/or diarriah.  It is seen as a long term but manageable condition.  Like IC and endomitriosis the cause of IBS is unknown.  It is thought that perhaps a communication problem between the intestines and the brain occurs which cause muscle contractions.  IBS is the most common of gastro problems and is shown not to get worse over time although symptoms can be mild one day and severe the next.  Diagnosis usually involves a sigmoidoscopy and an overview of the persons medical history.  There is no cure known, so diet and lifestyle changes, along with some medications can control symptoms. For more information visit www.aboutibs.org

How is IC usually Diagnosed?

Posted in some methods of Diagnosis on January 17, 2008 by icangel

*I am not a medical professional.  All descriptions of procedures and information are from my personal experiences as an IC patients.   This is not ment to replace the advice or information from your DR. 

IC can be difficult to diagnose.  Mainly because there is no one test that DR’s use.  Because of this it can also be time consuming. 

The number one way to begin the diagnostic journey is to rule out all other possible medical conditions.  IC symptoms often mimic other conditions.  unfortunately those with IC have a higher probability of having other conditions along with it.  Mainly things like endometriosis(which is what I have), IBS, pelvic floor dysfunction and auto-immune conditions.  But I will be posting more on that soon. 

In many cases a trip to other specialists is not uncommon.  Usually a gastrointerologist and a gynecologist to test for any other abdominal conditions.  In my case I had an endoscopy and laperscopy before they were able to give me a diagnosis of IC.  And although it is time consuming it is important to make sure there is nothing else going on or even adding to the IC symptoms.  Endometriosis and IBS can wreak havoc on IC pain, adding to urgency and menstrual cycle symptoms. 

 After any other conditions are ruled out or treated, and the symptom still persist, a bladder distention under Anestesia is usually performed. This is always done under Anestesia if IC is suspected.  This is because the preocess is intolerable for those with IC. It is a procedure where a catheter and small camera are inserted through the urethra and into the bladder.  The Urologist then begins to fill the bladder with liquid.  As the bladder stretches to its capacity, the Dr can see through the small camera any signs of IC.  The two common physical signs of IC are pinpoint bleeding, resembling just that, little pinpoint spots that look like blood.  And Hunners Ulcers.  While the urologist is looking for those signs, the bladder is filled to its capacity to test how much urine it can hold.  In some cases the bladder has gotten smaller and isn’t able to hold the “normal” amount of urine.  But more often, the bladder has what is seen as a normal capacity, and our urgency is due to the pain the urine creates while the bladder is filling up.  At this time the DR may also want to take a biopsy of the bladder to make sure there is no signs of cancer.  But please remember that a risk of cancer is in no way associated with IC. 

I do want to put some at ease by saying that although there are physical signs in the bladder which are unique to IC, symptoms of IC can be felt before the actual signs are visible.  So if your experiencing all the symptoms,  and have a clean distention, please don’t feel crazy or give up hope.  The bladder signs may not have appeared yet and  you may want to request another procedure  after a few months if symptoms persist.

When you wake up from the procedure, they will wait for you to void and measure the cc’s of urine you are able to put out.  From what I know of this, its done in-case a problem with voiding occurs.  The pain after the distention isn’t always as bad as you imagine.  In-fact until you urinate you may feel like you would any other day.  But your first void after the distention can be very painful.  In my instance I felt as though I was urinating razor blades.  I don’t know the exact reason for this, but can imagine it has to do with how long the catheter was in the urethra.

In some cases the bladder symptoms may improve after a distention for a bit of time.  If this is the case the DR may want to repeat the process in the future.  But if that’s not your case, don’t worry. It doesn’t happen for everyone and in my case, only exacerbated my pain in the following days. 

I do also want to note that the uro may perform the distention before the ruling out of any other conditions.  This is only the most common route, not always the one taken.