Christmas Day I spent the afternoon on the bathroom floor and crying and rocking in bed.  Luckily I was able to spend Christmas Eve with my family and it was the aftermath of having too much fun.  But the pain really kicks my ass.  Pain pills, heating pad, soaking in a tub, nothing works for this type of pain. It's like someone has a vice and won't let go and it is a searing strong pain.  I would do or take anything to be able to get some relief as I sit here it's just a dull roar.  It is really maddening to have to deal with this as I'm sure many of you know.  Sometimes relief just seems nonexistent when we need it. And that is my Merry Christmas.   Crohn's Disease just doesn't care if it's your Birthday, Anniversary, New Years or Christmas it comes when it comes.

I have become somewhat of a shut in and have had to accept that about my health and situation.  I used to be the life of the party.  But what is most hurtful is when you are unable to go to gatherings and you hear behind your back how snide comments are made about why you didn't come.  Not only mocking how you feel but kind of making fun of you.  No one chooses to stay home and not be able to get out and enjoy life.  But if you are sick enough that you need to stay home, you surely don't need others making fun of you are talking about you in an unpretty light.  I realize that the decision to save my energy for the really important things in life was the right decision as anyone that needs to use the sick and down hearted to poke fun at are not the ones that you waste your precious energy to be with. 

Usually I can put a positive twist on being chronically ill, but not lately.  I really just feel damm sick of the whole thing.  It's wearing on me and I really hate that I am even letting it get to me at all.  I should just accept my fate and make the best of it with a smile on my face.  I'm tired of smiling and pretending everything is okay because it's not.  It really, really is not!  It doesn't go away and it doesn't get better.  I have plenty to be thankful for, don't get me wrong.  But I have plenty of health problems that are becoming impossible to deal with on a daily basis.  If you have to scream to have a bowel movement and feel like you are going to pass out, I imagine that is why I am feeling at my whits end.  I am only human and can only endure so much suffering.  It isn't a pity party, it's more like I am really mad.  There are millions of us feeling exactly as I do yet there is no cure in sight.  For a few select few who catch this disease earlier in it's inception they can have a period of remission for the rest of us, it's a living hell!  I realize what I am saying isn't pretty and not an easy read but I just needed to say it.  I'm sick of this shit, no pun intended.

I was so thankful to have a decent day yesterday but then it hit me.  Nausea, pain etc.....  So it continues today.  I despise nausea, give me pain and bowel problems any day over being nauseated.  But I guess I just have to take what is dealt to me and make the best of a bad situation.  Many severe Crohn's sufferers such as myself describe this disease like having the flu 24/7.  It's true, it is so similar.  My joints are in severe pain, so much in my shoulders.  Nauseated and I don't dare eat.  It feels like the start of backing up and if you have Crohn's Disease you understand what I am saying.  When you don't have regular bowel movements and your nausea starts in, it's a bit scary.  If it's not coming out well then it shouldn't be going in.  It is never a dull moment being ill, that's for sure.

I spent the morning in the bathroom screaming into a towel.  Really?  This is what my life has come to?  Other people suffer like this too?   How can this disease be so horrific and so many people have it and suffer and  nothing is really being done?  It makes me sad not only for myself but the millions of other sufferers.  This is no way to live.  The medications available are only bandaids.  They don't cure this disease and come with some very serious life threatening side effects.  That was the start to my morning.  I immediately take a pain pill and then the suffering begins.  I don't qualify health wise to take Stelara, it comes with a dangerous side effect of the brain that could kill you and liver damage taboot.  Cymzia another one that comes with serious side effects including heart damage, liver damage and lupus.  Those would be my choices if I was well enough to be able to take them.  I have tried the natural path too, nothing works!  It is so disenchanting that not only do we suffer but the choices are so damm limited.  The strong drugs are biologicals often made from animal proteins, they are so dangerous that it is only out of desperation that you try them.  We need more research and only then will we figure why we have this disease and then maybe we can adequately treat it.

I literally wake up unable to sit up by myself because my Lupus pain is awful.  It is in my shoulders, elbows and knees.  That along with Crohn's pain in my lower right is just plain getting old.  I awake feeling like I have been on a bad drunk the night before and would think I am terribly hungover but it is just the combination of Crohn's and Lupus symptoms that is making me so sick.  The last few days I haven't had an appetite and find the less I eat the better I am able to deal with the Crohn's pain.  This is not a very good quality of life, I realize this but what am I to do?  Nothing is changing and seems that I am progressively getting worse.  My only hope is that my liver heals enough that I might be able to eventually treat the Latent TB and therefore eventually be able to treat the Crohn's and Lupus.  However, I say that with gravity as I am not sure what I would be willing to take out of the few drugs I have left.  There are about three I haven't tried and each have grave side effects.  After contacting Lupus from the last drug, I am hesitant to try any medication in the future.  But as I see my health fail, I might have to change my mind.  This is hard existence but it is my life and I have to try and make the best of it.  I feel terrible that my family has to go through this with me, it makes me sad to put them through this.

I think being chronically ill should afford you a few breaks from those around you.  God knows you aren't getting any breaks from the universe.  It is not an easy road.  To wake up everyday and put a fake smile on your face and make the best of a very bad situation.  If you really woke up and let everyone around you know how you truly felt, no one would want to be around you.  So shouldn't we be able to catch a few breaks.  Leave us out of the bullshit, try and make our lives a bit easier.  Is it really too much to ask.  We barely have the energy to function most of the time but to deal with unneeded stress and to put our energy to things that we really shouldn't have to be dealing with.  It is not an easy road. But just a bit offered by those closest to you can make that road a bit easier.

It is Crohns Disease Awareness Week.  Approximately ten years ago I had never heard of this disease.  Had no idea what I had been diagnosed with.  I just new I was terribly sick.  Ten years later I know much more than I did then and continue to be just as sick if not worse.  But the difference is that I now know many, many people who suffer with the same symptoms and pain that I deal with.  There seems to just be more and more people dealing with this every day.  They seem to be getting younger and younger too.  It is just devastating to think that a young person has to live the rest of their life living with what I deal with on a daily basis.  It really is a terrible quality of life and to think that little folks have there whole life ahead of them with this in mind is just a devastating thought.  There is no cure, for a few lucky ones there seems to be a stabilization or remission that they are able to reach, for the rest of us it can be pretty ugly.  Hopefully with the awareness reaching more and more they will come up with a cure or even just what causes this.  The hope that in my lifetime I might get some of my life back is my hope but even more so is the hope that the younger generations won't have to live with this for the rest of their lives.

Someone contacted me about my Lupus side effects because they too had severe side effects from this drug.  After really looking even more it seems that fungal infections are very consistent with this drug.  I wonder if the growth that was in my adenoid (I might add that my specialist was very stumped and surprised as he had never seen this before) might be fungal.  It wasn't cancerous, thank goodness but was infected.  Had I known to ask I would have put two and two together.  It is back and is on both adenoids now.  Seems that some of the people who got fungal infections, contracted a very hard to get rid of fungal infection.  One young man posted about his mother dying from taking Humira.  I currently have a chest cold and it hurts to breath, this along with the Latent TB has me worried.  When does the government say enough from this drug and take it off the market.   Are there just so many people that it is helping that the ones of us who have been hurt are minimal in comparison?

Just when you think things can't get any worse for you, they do.  Lupus Myositis in my upper right shoulder.   I literally cannot get myself up to a sitting position after sleeping.  The pain in my shoulders is debilitating at night and in the morning, gets better and then returns in the afternoon.  My Crohn's disease is really flaring it's ugly head today too.  Along with this, my migraines kicked in last night and all this with fighting a chest cold.  I feel and look like crap.  You know you are miserable when you look miserable and you just don't care.  That's me.  I am sleeping most of my night in a chair, because lying down is too painful.  I may sound like a broken record, but really Crohn's Disease seemed overwhelming as it was and then to deal with Lupus on top of it because of the Humira seems just over the top.  Don't think it can't happen to you, it did to me and I worry that many aren't being careful enough with this drug.  I worry about my chest cold since having developed Latent TB while on Humira and being unable to treat it due to my liver damage from yes you guessed it Humira.

My lupus is really flaring.  My joints hurt so bad I am unable lye down and sleep.  I sat in a recliner most of the night.  I wished those that are taking Humira would really reconsider the drug.  It has left me in a devastating painful mess.  If it can happen to me, believe me it can happen to you.  I wouldn't consider Stelara either.  It has a very dangerous brain side effect that could kill you.  These are not the light easy drugs they are advertising on TV.  Take for Psoriasis, well it gave me Psoriasis.  Lupus is as bad as Crohns Disease, I promise you.  My joints are bright red and the pain is intolerable.  I cannot lye down as it hurts just too much.  Please, please, please if you are taking Humira and unless it is a miracle drug for you, consider something, anything else.  I am not the only person who has developed Psoriasis, Lupus, Liver Damage, Migraines and Latent TB from taking it and I know I will not be the last.  You think Crohn's Disease is a tough road, it can get much worse.

I am really putting forth the effort to eat right.  I didn't eat red meat or consume sugar for twenty plus years and now have gone back to not only  not eating read meat and avoiding sugar, but eating only fish.  I have an occasional egg and cheese.  The one exception is yogurt everyday.  Currently I am consuming only whole wheat but am thinking about switching to gluten free.  I have and continue to Juice everyday.   Tonight's dinner is Trout and steamed vegies.  I have read that a vegan diet or even partial vegan as I am doing is supposed to help in aiding staying in Remission.  I realize my problem is that I am not only not in Remission but suffering quite terribly.  Including today, no amount of anything seems to touch my pain.  While I have seen no difference in eating this way, I do feel that I am getting better nutrients than the low fiber diet.  Now this may not be realistic in the long run, this I realize.  But the longer you are sick the more desperate you become to trying almost anything for relief. 

Living in Central Oregon and needing Specialized care is in itself not a good combination.  The specialist are an hour away from where I live and there seems to be only one group of them at the major clinic.  The clinic itself I am sure is wonderful, however the GI Department is with many faults.  First off, it takes months and I mean many up to 6 months just to get a return appointment.  Can you imagine going in and seeing your Speciality for Crohn's Disease and not being able to return for an appointment for followup for over a half of a year.  That's not even with one of the Doctors that is seeing an Assistant.  That department has taken on too many patients and in my humble opinion is all about routine colonoscopies for the elderly instead of really taking care of patients with bowel diseases.  I look forward to leaving this area eventually and going somewhere where the treatment is real and they have ample doctors to help the sick.  Same goes for the other specialists you need to see.  One Infectious Disease Doctor for the whole area.  A even busier group of Rheumatologist at the same clinic that take an act of god to get into.  This is the sampling of health care you have to choose from if you move to this lovely little area outside of Portland.  It is a great place to live as long as you don't get sick.

Awoke during the middle of the night to nausea and it just wouldn't go away.  I forced myself to stay still and with the heating pad eventually fell back to sleep.  This is common with Crohn's Disease.  Your food doesn't go all the way down because of inflammation in your intestinal tract.  Of course this morning I am in horrendous pain and suffering.  I am ever so thankful that I don't have to get up and try to go to a job and put on a happy face.  I tried doing that for many years and it was miserable.  At least I can be in the comforts of my home and deal with this on my own, there is something to be said about that.   The problem with having a disease is that it is so multi faceted.  You don't just have one problem.  It is a variety of symptoms and together they make you very miserable.  I am sure this is true with most diseases.   If you see someone with a known disease, remember they may be suffering from many ailments.  Give them a little extra grace as more than likely they will need it.  I think this may be true for even folks who are well, they may have health issues that are ailing them.  I guess my point is be kind to each other, offer a bit of warmth to your fellow human being, life isn't easy for everyone. 

Saturday was spent all day in the restroom and Sunday in bed.  Really when I finally fell asleep through the pain last night, I woke feeling as if I haven't slept in weeks and the pain was back worse than ever before.  I just realized this morning that I am taking 24 pills a day, minimum.  It is laughable considering how sick I really am.  Sometimes I wonder how I am able to get through this, day after day.  I no longer have any good days, it's just the matter of how really bad I feel.  Considering I take so many pills and I am unable to take anything to treat my Lupus or my Crohns seems ridiculous but until my liver heals, which I cross my fingers it does, I will be unable to treat the TB.  Until the TB is treated, I won't be able to treat the two Diseases.  Really treating is an overstatement.  There are no cures, there are drugs that may or may not help with your symptoms and likely will leave you worse off than you really are.  Until there is a cure or even a known reason we are afflicted with these diseases there will be no relief.  We really are just trying to put bandaids on a wound we don't even know how we got or why it is there?  That really is a hard way to live and sad would be an understatement.  This disease has to be radicated if not in my lifetime hopefully my children's lifetime. 

Yesterday I could barely stand up or sit down due to Lupus pain in my hips and knees.  Today I cannot control my bowels, just changed clothes and bathed for a second time and it's noon.  Thank goodness I am home.  I can't image trying to be at a job and deal with this along with the severe pain.  It seems like a cruel joke but it is my life.  I watched a show on TV last night about individuals whose bones turn to stone.  There are 700 such individuals in the world.  So it could be worse and that is what keeps me from feeling pity for myself.  I would rather deal with this, than what they have to deal with.  And the minute you start taking life for granted you too could be hit with something devastating that will forever effect your life.  So until then, keep moving and enjoy every blessed minute you have!

The pain yesterday was the worse I have ever endured.  I wonder how I survive through it, but I seem to make it. Today isn't much better, although it must be because yesterday at this time I was sitting in a hot bath of water trying to get some relief since the pain pills were doing nothing. NADA! I cry a lot too.  Pathetic I know but I have to, it's the only way to bear the misery. My pain is always in the exact same spot.  My lower right quadrant, my colon.  I suppose it is like having a flaring appendix that never is taken out, just constant misery.  I would never in a million years expect this for my life but it is what I have been dealt.  I just have to deal with it and make the best of a bad situation.  Some people get relief with an ostomy and many don't.  There isn't an easy answer for this.  Furthermore the drugs being used at the present time seem very unpredictable and new, I realize this generation of sufferers are guinea pigs for the future generations.  There will come a time where they will have drugs that actually offer relief or a cure for this, but until then I have to fight the fight.  Sometimes worse than others, right now it is worse.

I am in so much pain today I can barely think straight.  I will probably just go back to bed and try to sleep though it and deal with it the best I can.  Not much else I can do.  There isn't much that going to the Emergency Room would do other than giving me stronger pain medications.  I hate the pain medications as it is, so I would rather stick it out and just try and get through it.  I feel bad that so many other people are going through the same thing, it is not an easy existence.

The pain from my Crohn's is so bad it hurts to stand or sit.  The best position is lying flat.  I spent most of the night with vomiting and nausea, I prefer dealing with the pain over that.  My joints are red and inflamed this is the Lupus flaring it's ugly head.  My joints will actually break out in a red rash and then the skin will turn wrinkly and funny.  Well truly none of this is funny to deal with, but it is what I have been dealt for some reason, so I will make the best of it.  Just some days are easier than others.  Clearly this is not one of the easier days.

Today I went against my better judgement and tagged along to grocery shop at Costco.  I have no idea what I was thinking and why I thought all of a sudden I could handle this type of trip.  I spent most of the Costco visit in the restroom wishing that I was at home. As nice as it is to get out, it just isn't worth it.  Many people suggest that I just push myself to do things and pretend everything is okay.  There is no pretending with Crohn's Disease.  It is brutal and relentless.  You can't just imagine yourself well and life as normal.  I am in my pajamas and it is early afternoon.  I feel as if I ran a marathon instead of a simple trip to the store.  From now on I will listen to myself as I know what is best. My normal isn't the same as others, but I will stick to my normal.

Crohn's Disease is a living hell of daily torture and pain.  Swollen and abscessed internal organs make daily living difficult if not impossible.  I have known pain as I delivered two babies naturally and I would compare the pain to the pain of delivery.  You are dammed if you eat and you are dammed if you don't. I'm sure many people think you are living with a little occasional or even frequent diarrhea, let me tell you that isn't even the base of the problem.  Crohn's Disease slowly kills your intestines and colon and slowly but surely tortures you to death in the process.  Along the way it picks away at other areas of your body and the attempt to treat it brings you scores of other ailments some so debilitating that you wished Crohn's Disease was your only problem.  This is the life of a patient with severe Crohn's Disease.  You wouldn't wish this existence on your worse enemy.  The torture doesn't let up and the pain is unbearable! I am not sugar coating it as the truth needs to be told, it's true it may not be this bad for all but for myself and many this is my daily existence.

Some days I can handle the pain others not, today seems to be one of those days that I just can't take it.  It is just so constant and the pain pills seem to do nothing to touch it.  I had an errand I needed to do but really could care less about moving.  Sitting her with a blanket and heating pad.  I am sleeping but feel like I have run a marathon and not slept a wink when I wake up.  What's with that, furthermore I look like I haven't slept a wink.  Not a pretty sight.  No appetite and just constant unyielding pain.  So I will spend my day hoping that tomorrow will be better!

Today is day five of an all liquid diet.  So far, it has brought me little to no relief.  Other than the fact that I feel less bloated.  A lot of blood in my bowels and pain, I was hoping this would curtail or eventually stop all this.  I will continue, although I think I'm reaching for a miracle that just isn't going to be there.  This is an ugly disease that is cruel in its intent and doesn't seem to want to give up.  If you are thinking about doing this, I honestly don't think it's worth the effort.  As it does take a lot of effort to not eat, even with as little as I was able to eat, I still struggle with it.  No, I wouldn't suggest this, those folks who say that it cured them, probably weren't in the same state of the disease as I am and I am happy for them, but I honestly don't see this as a cure.

After being so sick I could barely keep my head up, I finally decided I need to do something drastic.  I started yesterday a liquid diet for six weeks.  I have read that doing so gives your body time to heal itself since your bowels are not being regularly used.  So I will continue to juice one meal a day, drink ensure for another meal and try to get through this.  Trying to intake enough calories that I don't lose too much weight.  Although yesterday I lost two pounds.  My pain level has been more tolerable and that in itself kept in my head might keep me on track.  The pain pills actually work instead of just bringing it to a dull roar.  So we will see how this goes.  The idea is that after the six weeks you can slowly introduce soft foods and it will be easier to tolerate.  We will see!

I am thankful for a group of online strangers, who like myself are going through or understand the plight of being chronically ill.  They have quickly become my friends.  They themselves have or are experiencing similar illnesses and are genuinely capable of being understanding and caring.  Without them it would be a hard existence as I am no longer my old self.  I used to be able to clean the whole house and now am lucky if I can clean one bathroom.  I used to go grocery shopping and handle it by myself and now I am lucky to go and pickup a couple items with someone along with me.  Even though my life has drastically changed I am holding the hope that something will come along to cure or put my diseases in remission.  If not all, even one less illness to deal with would be wonderful.  So until then, I will keep doing what I do and keep the faith that with more awareness, something will change sooner if not later.

The perception with Crohns Disease is that you have a little bit of bowel problems.  Maybe too much Diahrea and some cramping.  I really think this is how the general public sees this disease.  Little do they know that many people live daily on pain medication.   Some are on pretty strong Biological Drugs similar to chemotherapy.  Many have other Diseases and or complications that they live with along with Crohn's Disease.  Most of had some sort of operation, resection or removal of some or all of their Guts.  The way Crohn's Disease is seen by others is changing, we are seeing more media ads and generally more and more people afflicted.  Seems that most everyone knows of someone with this Disease or something similar like Ulcerative Colitis.  Hopefully as things change so will the work being done to find a cure as that is really the only way we will be able to live pain free lives. 

It is very lonely to be a Chronically ill patient.  You hate to complain all the time, yet if people ask how you are doing, you want to be honest with them.  If you say you are fine, they will know that more than likely that isn't the truth.  I have found that when I was well I was relevant to my family members.  Coming from a large family I had a lot to offer my brothers and sisters.  Watching their children, taking them places, having them over for meals.  Now that I am cooped up and ill I have heard from one family member in the last year, to the rest I don't exist or my problems aren't as big as theirs.  That is the only reason I can think of for them to not care enough to drop an email or call and just see how I am doing. I know if something were to happen to me they would be all over it and would say they were so sad and missed me, yet I am not looking for interaction at death, rather during my life.  You learn to savor the people that care for you and truly care because they know that in health you may have more to offer but in illness you need them even more. Those are the few that truly care for you and aren't just doing it to stroke their ego, but to make sure you know they are there for you.

Sometimes I even surprise myself at the amount of pain I am able to endure.  Today was one of those days.  Just when I can't think I can stand it any longer, I some how manage through it.  There is something terribly wrong that we have been unable to come with a cure for this Disease.  So many people fight through the same pain that I go through daily too.  It shouldn't be like this.  But until something changes, I will have to keep putting on my big girl panties and fight through it, even when I think I can't endure it anymore.

The problem with this disease is that you need to eat to survive.  Every time you eat, it is a matter of your body fighting the food that ultimately needs to go through your digestive system.  You find quickly that food is a problem and hence other problems. Malnutrition, weakness, fatigue and lack of enjoyment.  I haven't eaten a meal in almost two years.  Absolutely do not go out to eat, no reason to.  I quit cooking about a year ago.   If you can eat for enjoyment, I say go for it.  Enjoy your food, don't over do it but don't stress.  Before this disease I stressed about everything I put in my mouth due to bullying about my weight when I was younger. I wished I had ignored all those comments and just lived life.  So if you aren't sick and are able to, enjoy life and live.

Daily there are commercials advertising Humira for Psoriasis and all the quickly read warnings and passed by like a flash of light.  But those warnings came true, I caught TB, Liver Damage and Lupus from taking Humira.  God only knows what else could go wrong form the Humira use and long term Remicade use.  These are highly dangerous drugs being used routinely.  I can only hope if I keep saying it that someone will stop and think about whether the consequences are worth the use.  I never in a million hundred years thought that on top of Crohns Disease I would now battle three more things.  If I had to do over again of course I wouldn't take any of these drugs but unfortunately I cannot undo what is done.  So my hope is you will read this, pass it along and think twice.

Some days I am just trying to keep my head pointed up and straight.  When others interact with us as Crohn's Patients they probably have no idea that our head isn't on straight.  While we may look like we feel okay, we might just be trying to function in the simplest form.  Patience is something that more people need to have and understand when dealing with us.  Especially those closest to us.  It's not going to help us by getting frustrated or expecting more than we can give, we are living every day to the best of our potential and while some days may be not seem like, believe me we are.  One of my biggest problems is the lupus fog and I even had it before I got lupus.  It's just the mixture of feeling pain, exhaustion, week, overwhelmed with illness and I could go on and on that make it hard to function like the rest of you.  So give us a break, don't expect so damm much and go a little easier on everyone else you know living with a chronic condition.

Not only is my Crohn's severally flaring but I woke up completely stiff and hurting in my joints.  So much so I couldn't stand completely upright.  My husband said it reminded him of his father, hunched over.  I took a  shower and while I was in there, the tub was filling with water.  I soaked in my tub with the jets for a long while and it did help things.  I was able to take the dog for a short walk and then the Crohn's pain took over.  I have started drinking Acai Berry to try and help with the inflammation.  It tastes not so good but is tolerable. Does it help?  Like everything else I take not really.  But I am willing to try and do just about anything to help.  I continue to consume very little and keep the foods that I do eat to a very soft consumption.  Yogurt, soft banana, organic peanut butter and occasionally a piece of bread.  What I would really like to eat of course, would be a great big salad, nuts, vegetables and a big piece of salmon or chicken but I have stuck to this diet for a year and a half and I will continue as anything else absolutely kills me.  I continue to consumer my probiotics, multi's and all the other vitamins in the hopes that something will make a difference.  I am still hopeful with the research that is new that replacing our immune systems will ultimately be the way to go.  Otherwise we are just treating a non-stop out of control train that continues to run harder and longer.

The pain today is over the top, horrendous!  It literally hurts to sit, stand or walk.  My lupus is flaring and I just generally feel ill.  I slept in and out through pain and finally gave in and got up and sat in the restroom most of the morning.  People just don't understand what it's like to live with this.  It is just no fun at all and it just seems to progressively get worse instead of better.  I was disappointed to be denied the Drug Trial to replace your immune system.  As drastic as it seems, I would clutch at anything at this point to feel better.

Yesterday I tried a trip to Costco, never again.  It is just too much for me.  The pain when I walk is unbearable and I am perfectly happy to stay at home and not endure that.  It seems like it should be so simple but the constant pain just makes everyday things in life very hard to do.  I used to enjoy walking around looking and everything and sampling food.  If it hadn't been for the fact that it was 100 degrees I would have sat in the car.  Pushing myself through these things just makes it worse for later and later I did pay for it.  Staying at home and being as still as possible is much more enjoyable that going through situations that seem impossible.  My lupus is flaring, my crohn's is flaring and only having to deal with myself is about as much as I can take! 

Wow Crohn's kicked my ass yesterday and then some.  My husband actually jimmied the lock to come in and help me by giving me a pain pill to get it kicked in as soon as possible.  Today it literally hurts when I walk, my lower right groin stabs and I have had it checked before as I thought maybe I had a hernia.  Who the heck knows, maybe that is the lupus talking with the stabbing pain.  You seriously have to live life to the fullest as you don't know when and where your time will come and you will be stopped in your tracks as I have been only to live each day through your illness.  I'm not whining, I'm just saying I like the rest never thought in a million years that this is how my life would end up. Just saying.

Yesterday I ate a banana and a cup of Activia Yogurt.  I changed five times and bathed three.  That pretty much was my day in a nutshell.  I guess it explains how I felt pretty clearly.  The only good thing, is that I am able to be home and not have to be out and about.  It makes a big difference in having to deal with these type of life issues.  I can remember being in a classroom and wondering what the heck I was going to do when this disease first kicked in and having to run and use the students restrooms, not fun.  Then having to bring changes of clothes with me to work as many times I would have to change before or during my day at work.  So being home is just so nice, it's hard enough to deal with this crap, excuse my pun but being home just takes the stress off of it.  So for those folks on disability with Crohn's Disease, they more than deserve it.

My son started juicing to try and see if he could help his epilepsy which came on the summer before his Senior year in High School.  So I have been trying a little each day to see if I can tolerate it.  This morning it was like giving birth, there is  no other way to explain the pain.  Screaming and crying trying to get through it.   It is just so intolerable.  I don't know if it's the little bit of juicing I am trying.  It tastes wonderful and I could easily do it for every meal but I am not sure it is worth it.  My son found that he couldn't do it strictly without food as his epilepsy just wasn't liking it.  You read and hear about how people are magically cured juicing or going some other natural route, that's just what it is, magic.  It is mean to put forth claims and then put people who are struggling anyways in such harms way as to try things that may in fact be healthy but just are not going to work to cure their diseases.  These diseases did not come on overnight and nothing we do is going to cure them overnight, if it's too good to be true, it's too good to be true.  I always wondered how all that fiber was being tolerated by patients with Crohn's Disease and it obviously isn't.  

My fatigue is just over the top.  Ever since I woke all I have felt like doing is going back to bed.  My joints are overwhelming me with pain, my abdominal pain is killing me and I just don't have the energy to keep moving.  Anyone who used to know me, knows that I was the energizer bunny.  I never sat still and moved from the time I got up till I went to bed.  Now I just find it hard to stay out of bed.  But once again, I am thankful I am able to do that. I can't imagine having to get up and go to a job feeling like this, there is just no way I would be able to.  Hopefully the fatigue will get better, but my experience tells me I'm do for a major lupus outbreak.

Seriously rough night.  I just couldn't fall asleep through the dang pain.  Nothing seemed to help.  When I finally dozed off, I awoke to excruciating pain.  Ugh! I am so tired and just sick and tire of being sick and tired.  This disease is hard enough to deal with, but with lack of sleep it's intolerable.  Can anyone say CRANKY!

The last six days I have felt like I have a severe case of the flu.  I know that it is my Crohn's and Lupus.  Last night the migraine kicked in.  I used to have a limited diet I could tolerate and now even those few foods cause me great harm.  If I sleep, I wake up with severe abdominal pain and the morning is spent trying to tolerate the pain.  The chronic pain really takes a toll on your system.  I notice my hair falling out, my lupus flaring with red rashes that burn and I'm sure that is the reason for the migraine.  My patience is low, I have very little time for all the petty games in life, my joy level cannot be ruined by things that just really don't matter in the scheme of things.  But everyday I put a brave face on and get up and tolerate it the best that I can.  The less I eat the better it will be but eventually the fatigue gives way and I find myself eating a few crackers or a piece of toast only to pay for it immediately!

Back to not being able to sleep through the pain.  Nothing seems to help and yesterday was just one of those days.  My lupus is flaring and I am really broken out and the joint pain is horrendous along with the pain in my lower right abdomen.  This all seems to be constant and doesn't change.  Had some toast and crackers yesterday and a bit of yogurt, really stuck to my diet for this disease.  The lupus rash seems to not be wanted to go away and is a bit miserable.  Ah well, there really isn't anything I can do but I keep looking and searching and hoping.

Tried to go run an errand and ended up spending the whole time in the restroom at the grocery store.  Wondering if I was going to feel well enough to be able to get in the car and go back home.  Such is the story of my life.  I think that's why I am so happy to be able to be at home.  Leaving the house is just not feasible as sick as I am.  It doesn't look like it's going to change anytime soon either.  Seems to just continually go downhill.  Thankful to get home and take a pain pill and put on my heating pad and be close to my own restroom.  It's the small things in life!

Carrying around this Latent TB is quite unnerving.  Every time I cough, I worry that it could be the start of something much worse.  If I hear someone cough while I am out, I am quick to leave and use the hand sanitizer.  This is summer, I can't imagine what it's going to be like during the winter, when all the germs are out and about.  I wished I could just take the treatment for 9 months and be over it, but the risk to my liver isn't worth dying over.  But as long as I am in this position it isn't going to give me much hope in treating my Crohn's Disease and or Lupus.  Currently I am flaring with my lupus and there are unknown dangers with letting it go untreated.  It can cause heart and kidney problems, both of which are pretty serious. 

I have been on a low residue for restrictive diet for about a year and a half.  I quickly lost 30 pounds and then finally found a few things to keep me going.  Low residue is basically low fiber, easy on the system bland foods.  If I don't keep to this, I pay heavily.  Yesterday for some odd reason I decided to eat Four Bean salad, let's just say it's easier going down than coming out.  My colon and intestines can't tolerate much.  I basically exist on toast, white only as the healthy bread is just to hard to digest.  I am allergic to Peanut Butter but eat a small amount of organic as the protein is almost all I get.  Even though I am lactose intolerant I still eat Activia yogurt a bit each day, the probiotics are important.  I can tolerate bland eggs, though the though of eating them turns my stomach, just because I am sick of them. I try to eat the high Omega 3, as it's about all the Omega 3 I get.  Crackers are tolerate as long as they are not the healthy type.  Bland soda, usually Diet Sprite.  I know coffee is a no no, however I need it to keep going, so I have a few cups in the morning.  Sometimes I can eat canned pears or applesauce, but it's more of a treat as the fiber doesn't agree.  Bananas are a staple for me.  That has been my diet for some 17 months now.  I truly crave healthy food.  I would love to have grains, proteins, veggies and fruit but unfortunately it doesn't love me.  Since I am unable to treat my Crohn's Disease this is another way for me to try and control it, it doesn't necessarily work but it helps along with trying to control the pain.  Energy is a big problem on this diet but you have to do, what you have to do.

I have been trying to decide if I should continue blogging.  My intent was to make people aware of what Crohn's Disease is really about and how it affects you.  A lot of the time I think people just find that it's too much to read or even comprehend how sick we really are.  Reading and following someone with this disease seems to be overwhelming to everyone except those we have it themselves.  So I took a couple weeks of a break and now I am back and feel that yes, I should probably continue as hard as it might seem for some to take.  If nothing else it will make others happier about their situation, if for nothing else but the fact that they don't have to deal with this.

Have you ever had the flu?  Maybe once a year, every other year and the thought of it give you the quivers.  Cohn's Disease is the flu everyday of your life.  Constant sickness and your body never really gets the time to recover.  You know how after the flu you are weak and it takes a week or few days to get back to yourself.  We never get the opportunity to get back to ourselves.  It is a constant beating of your body and you are constantly fighting that beating off.  There are some who achieve remission with their disease and they are very fortunate as many of us don't.  Next time you meet someone with Crohn's Disease remember they are sick every single day and they never get the much needed break.

In Central Oregon it seems as if there is a real lack of Gastroenterology Doctors.  They take months to initially get into if they are taking new patients.  Once in, the return appointments are sometimes as far as six to eight months out.  How can a doctor properly follow and treat a patient if it takes that long to initially see someone and the return care is so far out in the future.  As a patient you feel as if you are begging to be able to be seen.  It really is a disgrace and a problem if you are one of the few unfortunate ones that are sick.  There are a few large clinics/hospitals in the area, you would think they would be able to attract a few more specialist seeing that they are so busy.  Just doesn't seem to be so.  It is one thing to be sick, but another to live somewhere that being able to get treated is a long shot.

Most of us with Crohn's Disease probably don't look sick.  It is such a misconception to see someone who is really suffering, yet they may look healthy and you assume they are fine.  Assuming is really wrong, some of us are just forcing ourselves to go about our daily lives and look and act as normal as possible.  Our loved ones who are close to us can attest to what we really are going through.  Just because I get up everyday and force myself to shower and dress doesn't mean I feel like doing that.  I keep moving forward and try to keep things as normal as possible even though I feel far from normal.  When I was in the office with my Infectious Disease Doctor and broken out with lupus, he said "for as sick as you are you look healthy".   What the heck does that mean.  I don't have sick stamped on my forehead but believe me when I say, I am.   

My migraine has finally lifted.  Thank god.  So I was off to Walmart this morning, not to do the shopping but to tag along with my hubby.  I don't realize my energy level and just how sick I really am.  It was just too much.  Of course if I go somewhere I ultimately end up in the restroom.  Just walking next to the cart up and down the isles was just too much.  I really couldn't do it.  I am surprised that I am as sick as I really am.  I am at home so much and take comfort in being able to stay in the house and rest and get through the days that my inability to function as I used to sometimes surprises even myself.  I really took for granted being able to do everyday things and now I really miss it.

For the last sixteen months I have been on a low residue restrictive diet in the effort to control my Crohn's Disease.   I feel constantly hungry.  I have not eaten a meal in all this time.  I mostly snack on a few regular things.  They include soft bananas, eggs, a little peanut butter, toast and a little yogurt.  This is it.  Of course you can imagine I am sick of these foods since this is all I have been able to eat.  The other problem is my lack of nutrition and energy.   If I sway from these few foods there is hell to pay as you can imagine and many with Crohn's can attest to.  I drink lots of liquids in an effort to keep my energy up but it is hard.  I refuse to go out to eat as it is just painful to sit and watch everyone else and I no longer cook the meals.   I used to always be concerned about my weight and now looking back I would completely do it differently.  I would just eat and enjoy being able to eat because you never know when that will change.

I am a tad better today, not much but enough to hold my head upright.  I will take it.  Anything that leads me in the right direction is so welcomed.  Being sick all the time gets old and you long for the days or hours of some respite.  I don't have to be well everyday, nor do I expect to be,  but just a small break gives my mind a little bit of a break back to a better reality.  The reality of constantly being sick can be so dang hard.  So a little bit of sunshine in my life helps keep me mentally going in the right direction.

It's one thing to have bowel movements all day long and even during the night, but it is even worse to have to pray to be able to survive the pain and be able to get through it.  On top of all this I am having migraines.  Just finished having one and another one popped up last night.  It really makes for a miserable existence.  I am barely eating and the little food I do eat goes right through me.  I really feel crummy!

What a hard week I had.  My crohn's was relentless, lupus flaring so my joints ached and I was constantly broken out with a rash.  I had a migraine that lasted for days and between all three of these things I felt completely done in.  Of course it

Yesterday afternoon a migraine kicked in.  Nausea, head pain and just plain sickness.  The migraine medication makes me even feel sicker.  Up most of the night with Crohn's and pain and then the migraine even though treated came back this morning.  It's literally like having the flu.  Such is the life of someone with multiple Diseases.

My daughter called last night and I had just taken a pain pill and it was kicking in.  I was able to have a nice phone call with her.  Many times during phone conversations my bowels start kicking in and I have to end the call abruptly.  Same if I try to go out somewhere and get in line at a store, then the panic sets in.  People don't understand what we really have to deal with.  This disease has a terrible timing in our lives and it's stressful to be out and  and about and all you can think about is, am I going to make it.  So much so that I really prefer staying home and I'm sure many of you do to.

The people that stand by your side during a chronic illness like Crohn's Disease are quality individuals.  There aren't that many either.  Just a few people who are always there for you and always thinking about you and how you are feeling.  It says a lot about an individuals character and the love they actually have for you.  Most tire of hearing about you not feeling good all the time and would rather just not be involved or hear it.  Of if they do hear it, they feel like it's too depressing or too much to deal with.  My own circle has gotten pretty small.  In the end you know who really cares and who is just there because they feel like it's an obligation.  The obligated ones wither and the ones who care continue to care for the right reasons.

Today is the type of day where I have been in out of bed.  It hurts to stand, sit, walk or move.  Sitting in my robe, the middle of the day.  Can't eat, it just literally hurts too much.  This isn't abnormal for me, that's the sad part.  This is how my days are and have been and probably will continue to be.  Such is the life of someone with Crohn's Disease.

I awoke feeling wasted and the theme continued throughout the day.  In and out of bed, tried to take the dog out and ended up coming back in. Just feel completely horrible and wasted.  This is getting old, but there isn't much I can do about it.  Just keep going and crawl into bed every half hour or so and get up for another half hour or so.  I am not getting much done and couldn't even leave to ride with my husband on an errand.  Pain, diahrea, stiff joints and fatigue are just overwhelming.  It's like having the flu every dam day.

Bowel Disease One Global Family is a new Facebook Group I have joined.  You may want to consider joining or checking it out.  It's interesting to see where everyone is from and meet some of my Twitter contacts.  The biggest thing is that I am amazed really how many of us there are and how quickly this group is growing.  Being open and not afraid to talk about it, is I guess a good start. 

So I went and saw the Infectious Disease Doctor for my positive TB Test.  Latent TB.  I should really go with my gut as I knew it was a waste of time and guess what?  It was a waste of time.  He was super nice and friendly but for $495 for an initial visit should come more prepared.  Basically he spent the whole appointment trying to use the laptop which is now mandatory for the clinic.  He couldn't find my tests in the files and my insight into the situation of my positive test was right.  My liver is too sick and my Crohns would suffer too greatly to take the chance of treating the TB.  Somewhere between September of 20111 and February of 2012 is when I contacted it.  I wanted to know if the test was a negative, positive or a range, could it be a lower positive or higher.  He just couldn't find the results and then got pages too many times.  I almost walked out.  So I am going to try and find the answers myself. He said he would and call me and it's been a few days and I have heard nothing.  Probably time for him to retire too.  But like I said, great bedside manner and very nice.  Nice doesn't help me.  Without treating the TB, I will be unable to take Biologicals which lower your immune system and would make me more susceptible to getting TB.  The treatment is 6-9 months and can be expensive and needs to be done under supervision.  I can't live without my liver, I can live with a positive TB and all the other problems I have, so I will just forge on.  I will though have to be careful being around sick people.  He did say my liver didn't seem enlarged, this is good.  I really need to stick with my instincts on all of this medical stuff, generally I lead myself in the right direction.

I would caution anyone going on a Biologic drug to get another TB test no matter how long it has been.  Mine changed in a matter of months. 

I am by no means a weakling.  I had two drug free natural child births.  I know pain.  But passing bowel with Crohn's can and is overwhelmingly painful.  I have to literally pray to god to help me get through it and if not I ask him to bless my soul.  I really don't think the doctors have any reality to what we really truly go through.  I have never experienced anything so painful in my whole life and living with it on a day to day basis is just exhausting.  The saddest thing for me is that I wished I was the only person going through this, but it seems to have become an epidemic.  There are so many of you out there experiencing the same things.  Maybe if the physicians in this specialty had to live with the patients for a period of time before finishing their residency it would shed a whole new light on the severeness of this horrendous painful disease.  I will just not eat today and hope that things will calm down.

Going to to the doctors gives me anxiety.  Now I realize in my intellect how silly it is to let it make me anxious but I can't seem to overcome it.  The whole thought seems like such a waste of time, as nothing seems to change and they never really seem to have any suggestions of real inventive ways to make me feel better.  I think I have really built up an intolerance to the whole idea.  I should really just relax and whatever happens, happens, but I just can't seem to go there or get there.  So I know feeling like this is just plain silly and the more I let myself feel this way the worse it gets.  You would think as a doctor the whole idea of a really hard case would be exciting and challenging but instead I feel like they look at me like really, you know the answer, why are you here.   Somewhere deep down I have some hope, so I keep going and expecting something else, we will see.

It was a long, long night.  I slept maybe three hours if that and it was just pain all night long.  Today I am just barely functioning.  I cannot imagine getting up and going to a job.  Thank goodness my kids are raised.  Tomorrow I see the Infectious Disease Doctor concerning my positive Latent TB Test.  I know there is nothing I can do as strong antibiotics would kill my Crohn's, but it can't hurt to check.  I'm really in a pickle as I'm never going to be able to treat my Crohn's if I don't get rid of this positive Latent TB.  Most all the medications require a negative TB Test.  Along with that problem, I'm not sure my liver could take any strong medications either.  I am in a no win situation.  I just continue to limit my eating to try and keep my symptoms at a dull roar although that really isn't working either. 

My life and body doesn't function the same way it used to.  People who haven't been around me in a long time expect the same energy from me and it puts pressure and for lack of a better word to "PERFORM".  I am unable to go, go, go and do, do, do.  Having company for any length of time just takes the life out of me.  Really it is just too much.  Just being on all the time suck the energy out of my soul.  Before I used to be able to be the life of the party and entertain, it just isn't so anymore.  I need to choose wisely and be more vocal about whom I am going to sacrifice my health and let visit for more than a day.  We recently had company and it just through me for a loop.  I am so sick and just feel depleted of energy.  I hope I am not the only one who feels this way, is it just the drawbacks of being chronically ill.  My heart goes out to those of you who have to go and put a smile and brave face on everyday to go to work and it is the very last thing in the world your body wants you to do.

Everyday I get up and push myself.  I miss the days where I woke up with energy and feeling like I had life by the horns.  Now I feel like every movement has to be thought about and I literally have to pull the strength from in myself to keep going.  Where did things go wrong?  When I was diagnosed with Crohn's Disease and then GERD and then LUPUS and then LIVER Illness and LATENT TB.  That's where things went wrong.  All of these symptoms and illnesses have sucked the life out of me, but I won't give in as many don't, I will pretend I'm okay and push through it.

If I didn't have to eat, my Crohn's would be so much better.  I am good for a while and then I get hungry and give in.  I stick to the foods that cause the least amount of pain, but even so I am hammered by problems.  On top of Crohn's I am dealing with cluster headaches. Day after day after day.  I do have medication that helps but leaves me in a funk.  Ah well, such is a day in the life of Crohn's Disease.

The migraine medicine seems to not be working.  I just took another pill, pulled all the shades and hoping for the best.  I have had one for days and I can't seem to break it.  I am going to have to see the doctor for something different as it just takes my brain power away and makes me dizzy and sick.  I have had non stop diahrrea along with pain in my lower right abdomen.  Seems like I can't catch a break.  I never was one to get headaches and when I finally do, it has to migraines of all things. 

Seriously tough  night.  In a five hour time of trying to sleep I had to get up and change clothes and use the bathroom four times.  I feel wasted today and in pain.  I am sitting here with a blanket around me and waiting for a pain pill to kick in.  Again, today I was unable to go get groceries, so my husband is off doing errands again.  I am so thankful to be able to be home and not deal with this and have to go out and work in the public.  I can remember spending most of the morning in the bathroom, driving my kids to school having to race home to use the bathroom and race to work to use the bathroom.  I was exhausted most days before even beginning my day.  At least now, my exhaustion is only witnessed by my dog and family.

The theme with Crohns Disease seems to be the pain.  It doesn't seem to be addressed enough with Medical Professionals.  Even when you read about Crohns Disease it isn't mentioned that the pain would be constant and almost unbearable.  This is my second night in a row that I have been unable to sleep due to the pain.  Last night I managed to get a few hours of sleep starting at 3 a.m.  Looks like tonight will be more of the same.  It is exhausting to deal with so much pain and takes a toll on your health in other ways as well.  For me, it is a symptom that is as bad as the bowel issues.   I suspect if more of these professionals actually had the disease their take on it would be completely different.

Particularly hard day yesterday.  I had to go do some work and getting out was hard when I was so under the weather.  Then my particularly hard day went from bad to worse as I got stung by a bee.  Who would have thought this early in the year, but it's in the 80's here.  I failed to mention I am severely allergic.  My Epi Pen was expired and not wanting to pay an Emergency Room visit I decided to try and get through it.  I immediately took two Benedryl pills and drank tons of liquid Benedryl.  My throat felt like it was swelling and my breathing became labored but I lived through it and fell to sleep hard.  I really wouldn't suggest anyone EVER, EVER do this but I did.  I realize today that it was very, very, very stupid of me and I will get my Pen refilled for future uses.  But I am alive today and am thankful last week is over.

Today I feel human, not so much yesterday.  I woke up yesterday feeling horrible and it continued down hill from there.  I ended up on the bathroom floor with bowel incontinence followed by a migraine.  I put my pajamas on early in the afternoon and crawled into bed. Luckily, I have migraine medication that makes me drowsy and sleep put me out of my misery.  So far today things are looking up.  I don't feel totally wasted and the pain is manageable.  I feel like a super hero after making it through yesterdays hell.

I feel as if I am a burden on my family.  Frankly, my children seem to have little patience for my illness lately and my husband is carrying the burden of taking care of me.  Today I couldn't go and do a simple task of grocery shopping. So my husband is off to buy groceries and run errands.  I wish I could change things but unfortunately I can't.  I understand that it must get old to see me sick and nothing is getting better.  I cherish the few good days and hours that I am able to have some reprieve but it seems to be less and less lately.  I rarely hear from anyone anymore and this disease is becoming more and more isolating.  No wonder elderly people get depressed, when you are alone I suppose you start to feel that no one really cares.  At least I have a long life ahead of me and I always have the hope that things will get better.  I am just seeing things from a different perspective having been through being chronically ill.

Today I am going to the hospital for some tests.  It literally hurts to move, sit or even stand.  I'm going to have to go into the doctors and get a rinse or something for my mouth sores, it's quite miserable and hurts to eat.  No one realizes that the main problem with Crohns Disease and Lupus is pain.  It is just so overwhelming to be hurting constantly and beyond hurting to be in deep pain.  Also, I think there is such a misconception with Crohns Disease, most people think it's all about bowel issues but there is so much more to it.  It goes beyond just one symptom or problem.  It unfortunately, affects many parts of your body as I am learning.

The pain today is unbearable.  Absolutely horrendous to have to deal with this.  I suppose I will just go back to bed as the heating pad really helps.  I barely slept a wink and just tossed and turned through the pain.  Passing the bowels just about kills me and I pray to just get through it.  Seriously, a hard day.  My mouth is full of sores along with my nose.  Crohn's Disease can be a bad joke as it feels like today.  At least I am home and don't have to get up and go to work or worry about calling in sick to a job.  Bless the many sick individuals who have to deal with that on top of Crohns, it can't be easy.

My mouth is full of sores, my lower right abdomen hurts, even to walk.  Since it's been a week and a half and there has been no phone call to set up my pelvic ultrasound, I will give the doctors office a call today.  Try to get the ball rolling and get in and see what's going on.  When I wake up in the morning I am so stiff and it hurts just to sit back down or move around at all.  I immediately take a pain pill so that I can get my joints moving.  It's been over a year since I have been able to eat a regular meal.  I am on a low residue diet which consists of yogurt, bananas, eggs, toast and some peanut butter.  It's beyond old, I am incredibly hungry all the time. 

Had another migraine on Sunday and luckily we were able to get a hold of a doctor on call to get some medication in time to stop the migraine in it's tracks.  I haven't felt right, but not horrible, so I am happy with that.  Actually was able to walk my dog a short distance yesterday and a longer distance today. It's nice to have a break once in a while to feel somewhat civilized and participate in real life.  Being sick can be all encompassing, you don't realize it either.  So a reprieve is much appreciated and enjoy, short lived or not. 

I have been terribly sick.  On top of that, I have had a debilitating headache.  I don't get headaches, this has been going on for a few days and I am dizzy, my head hurts horribly and I am constantly nauseated.  The shades are pulled, I have my sunglasses on and pain pills don't even put a dent in the pain.  I finally went to the doctor yesterday and he diagnosed it as migraines.  Unfortunately since I am in the midst of this one there isn't much I can do, however he did give me medication to take at the onset of future migraines.  Really?  It seems like a bad joke.  I had an aunt who suffered terribly with migraines, she too was sickly.  She did not have an easy go with her health and now I am understanding even further what she went through. 

On top of migraines my doctor checked my iron count and is ordering another pelvic ultrasound.  He is writing another appeal to the insurance to try and get my Hysterectomy covered.  I have growths that are on the right lower uterus and during my menstrual cycle, not only is the bleeding horrible but the pain is over the top.  I appreciate his effort and can only hope that something can be done to help me.

Crohns Disease, Lupus, GERD, Asthma, Latent TB, Shingles and Migraines.  Hmmm. 

Three days of searing pain in my head and nausea.  I can't tell if it's migraines or a blockage.  Seriously feeling really bad this morning. I just want to crawl back into bed and close my eyes and wake up feeling better.  Problem is, each time I wake up, nothing changes.  I wonder how many other people feel the same way.  I miss the days of waking up and feeling well.  I wished I hadn't taken that so for granted.  If I ever get well, I will never ever again assume that being well is a part of life as clearly it isn't for everyone.

This week has been seriously hard.  Ah well, what can I do.  I am seriously tired today but will face it with a smile and try to make the best of a very  hard night.  I slept maybe four hours, I guess that's better than nothing.  My shingle seem to be better, knock on wood.  My joints don't hurt like they have.  It's just the lower right abdominal pain that won't subside.  I did get a new heating pad that can be dry and wet and has an automatic shutoff.  Problem with the shutoff is as soon as it shuts off, I wake up.   But it is much safer that way.  Hope others are feeling better than I am.

My day is just not normal.  I spend it taking pain pills, crawling into bed, sitting on the toilet and in between I have a few good cries.  I do work and try to get some things done in between but it isn't easy.  On a regular day or week I don't leave the house.  It's just too hard.  I either deal with pain or bowel issues.  My diet is very limited and has been for about 9 months.  When I get very hungry I have a piece of toast, otherwise it's jello cups, yogurt and eggs or peanut butter.  I still cook meals for my family but haven't eaten them in almost a year.  Some days I have horrendous joint pain, nausea and a fever.  I long for the days when I would sleep decent, wake up feeling energetic.  Eat whatever I wanted to and have a full day and come home tired and ready for bed.  To be able to leave the house, feel well and want to and be able to do things.  This disease makes you crawl in and hide, just to be able to deal with your life and symptoms.  I continue with the hope that things will change, crohn's, lupus, TB and Shingles something has to getter better soon than later.

Seriously, I feel disgusted with a few people in my life.  You would expect to be given a certain amount of patience in dealing with us.  I am sick literally 24 hours a day.  I didn't sleep last night due to the pain.  My mouth and nose are full of sores.  Not pleasant.  The pain in my lower right abdomen was so bad I just literally sat up all night with a heating pad.  People are so mean, they say mean things and treat you poorly when you are at your lowest point.  When your ability to stand up for yourself is just not available to you.  I think it says a lot about someones character if they take advantage of people at their weakest moments.  They go about their lives and leave you worse for the wear after taking it, it's really unbelievable and sad.  You can only hope people will grow and change but some are just going to be like that and never realize the hurt they leave in their path.

Another symptoms.  Actually has been going on for a while, just I have tried to keep it on the down low.  Unfortunately, my husband noticed one day and then while I sleep.  My right hand tremors.  He seems to be pretty worried about it, but seriously with all that I have going on, it's just another symptom to figure out.  I will mention it when I go to the doctors.  I am also experiencing fluttering in my chest.  Although my blood pressure checked at home seems fine.  Going to the doctor is of little interest to me, I even loathe going.  Not only that, but they really have been little to no help to me lately.  Crohn's, lupus, latent TB, Shingles, GERD,  Uterine Fibroids and now Tremors.  I will try to keep a smile on my face.

A few days ago I woke up with a new red rash on my stomach and blisters.  I am thinking after getting some wisdom from my ailing mother that I have Shingles.  It's like a bad joke, seriously.  Last night was a horrible night of sleeping, I can't explain it exactly but it's extremely hard to sleep through excruciating pain.  I'm thankful that I am sleeping but the sleep is odd when you are hurting.  It literally was almost impossible to force myself up and to move. If it wasn't for needing to run to the restroom I wouldn't have gotten out of bed at all.  I will forge on as I have work to do and a business to run.  I think this is what keeps me moving.  Seriously though, it's going to be an extremely long hard day. 

Extended family stress and a very sick hard weekend has sent me over the edge.  I feel like I have been hit by a train and every movement just hurts.  I will forge on.  Some people are mean bullies and I just have so little time for it.  The best thing I can do for myself is to cut ties from them and live my own life and take care of myself as no one else really seems to care anyway.  So here's to a better day today without the drama of the evil family members who have nothing to do but be mean to others!

Try having diarrhea and pain every time you eat or drink.  Then add 10 to 15 bowel movements a day, sometimes accidents included.  Add again, joint pain and aches that make you feel like a very old person, even if you are young.  Then add weight loss due to lack of eating and diarrhea.  Lastly, sleep problems.  Now we could add a lot more than that but we will leave it as is.  Consider living your daily life, everyday with all of these issues.  Will you sometimes say or spell things wrong, answer less quickly than you used to or respond wrong?  My experience is yes, consider people who live everyday with a chronic or debilitating illness.  When you come across someone regularly or once in a while in this position, give them a break.  Add a bit more kindness to how you treat them, be less quick to be critical.  Offer a kind word.  Someday you may to be in the same position and your kindness will be payed forward.

Pain, pain go away, come again another day.  This daily endless streaming pain is exhausting to deal with.  Pain pills give me some relief but for the most part I am dealing with it every moment of every day.  Even during the night sleep is taken over by the cruel pain that is in my lower right abdomen.  It has always been in the same spot.  My joints hurt and I have aches and pains in other areas of my body, but the constant knife shooting pain has always been my lower right.  It has become a full time job for me and I must say my spouse in helping me deal with this, sometimes better than others.  It is hard to believe that I may have to live long term with this, in this state of pain.  It is sad to think that others like myself deal with this too.  Something has got to give or change at least that is what I grasp for.

Many thanks to you who read or follow my blogs.  I realize everyone has their own problems to deal with.  The fact that you take the time to read mine and still deal with your own means a lot to me.  I never mean to diminish what others are going through.  Everyone's problems are their own and are just as important as mine.  It is no fun to feel bad, sick or depressed and hopefully my sharing will help you share yours with others.  So be good to yourself and take care.

I refuse to be treated poorly by anyone.  You would think when you are sick that you would be given a little bit of a pass.  It just doesn't seem to be so.  The people closes to you should be the most considerate.  To be treated rudely on a regularly basis is just not acceptable.  As hard as it is to close off communication if that's what is needed that's what will be done.  I think in doing so, the people who are rude will either realize it or move on.  The latter is sad but it's better than having to deal with bullying.  I have enough health issue to deal with that dealing with mean people is just too dang hard.

Watched Chris Hansens report on Drug Trials.  After watching it, I am thankful I didn't qualify for the Stelara Drug Trial and actually question some of these drugs I have taken that have given me horrific lasting side effects.  It is unbelievable the wrong that is involved in some of these Drug Trials that start outside of the US.  Paying patients to be a part of the Trials whether they have symptoms relating to the Drug or not.  Many are in more than one Trial at a time, just for the money.  It saddens me that this is going on and people are being used as human guinea pigs.  It surely will make you think twice about everything and whether the risk is worth the possible outcome or in my case outcomes.  All of these quietly disclosed possible side effects should not be so quietly hidden, they are real and can forever change your life.  If you get a chance to see this episode of Dateline you should take the time to watch it, it will forever open your eyes.

The only thing the doctors and medical profession have done for me is create bills and more health problems.  I am going to embrace the natural route in dealing with this disease.  I have been taking Fish Oil  and have seen a difference in my joints.  For quite some time I have been taking Probiotics and had stopped, so I am back taking them as well.  I have added Glucosamine for my Joints and aching, 5 Loxin for inflammatory, Liver Complex to protect my liver from anymore damage.  In the future I am going to add a multivitamin chew since my diet is non existent in order to control my crohn's symptoms.  My insurance will not cover acupuncture and I would like to try it out, so as soon as I can afford it, I will go and give it a try.  It surely can't hurt. I'm considering gluten free, since I am almost there anyway, the only gluten I currently consume is a piece of toast now and then.  With Crohn's Disease, Lupus, Asthma, TB, GERD I currently need to try something different because what I have been doing isn't working.

I have real grave concerns for others who are on Biological Drugs.  They come with so many known possible side effects and I think the thing that we don't realize is that the chances of getting those side effects must be really possible.  I now have two life changing side effects from Humira.  Used to fight my Crohn's Disease and now I have Lupus and TB.  These are serious diseases to deal with.  I started out just needing to get better from Crohns Disease and now my life will forever be different.  If I can get two serious side effects and that just in a matter of less than a year after stopping Humira, who knows what else is coming, then I think we should all be very, very, very concerned.  I am not trying to put the fear of god in anyone but to keep others from having to go through the despair I am feeling.  Please, please if you are not feeling huge relief in taking these drugs, then have a very serious conversation with yourself on whether the risk is worth the benefit. 

I am so disgusted I can't even explain so I will just say that I won't be able to be a part of the Drug Trial.  Instead I am off to see an Infectious Disease Doctor for treatment of yet another health diagnosis.  When does it end, it just seems like one thing after another. I am wondering if this too was caused by the Humira. 

I'm really quite miserable.  I think my lack of running to the ER and or Urgent Care isn't beneficial to my cause.  I suppose if I didn't try to always suffer through it, I would probably get more help in the end.  I can't even get help today with my pain, my husband asked if I needed to go to the hospital and I always refuse and get through it.  Truthfully, I have spent so much money on this disease and every visit costs an arm and a leg in tests. I'm getting to the point that I just cannot keep dealing with all this pain.  When is enough, enough.  Two natural child births make me realize I'm no wimp either but really, it's getting very old.  I wished I had something pleasant to say, I just don't.  It just isn't any fun!

I am so surprised by the people that have the most compassion. The ones that seem to have their own set of problems are the ones that are the most understanding.  The ones with easy little lives seem to not care about others as much as you would expect.  People who spend their lives trying to make big impacts do so only for recognition.  People who care about the little people are the ones to be recognized.  You can try and impact big situations but to help someone hurting directly is a bigger act of kindness.  You can donate to a non profit and make yourself feel better, but to call someone who is sick or in need of help is truly giving.  The big picture may make yourself feel better but the smaller picture makes the hurting feel better.  Are you impacting the big picture or the small picture? 

It is almost midnight and here I sit trying to work.  My lupus burned spots turned into dry shriveled skin that eventually blistered and is now a hot mess.  It's in the most uncomfortable spots, my whole underarms, close to my breasts, very sensitive spots.  My Crohn's of course started in as soon as I woke and all day long continued to fight me.  I am having a hard time falling asleep with the pain lately.   Long, long days.  My body is worn out and my pain won't let me sleep.  It is obvious each day I am getting much worse instead of better.  When I do finally see some relief, I'm going to be very appreciative.

Super bad night yesterday.  Ended up on the bathroom floor unable to get up to the toilet or to bed.  Luckily my wonderful husband found me and put me to bed with pain pills and a heating pad.  Back and forth to the restroom and unbearable pain.  But somehow, like always I made it through it.  Today I feel exhaustion.  A very long week, the testing for this Drug Trial I have to say was just too much for me to go through.  I am still strained about my participation.  It's possible it will cause more harm than good or it may be a miracle for a while anyway.  Hard to say.  After last night, I'm almost willing to do long term Prednisone.  I am not a weakling by any means and will trudge on. 

The point of my blogging isn't to expect anyone to feel sorry for me or make you yourself feel bad.  I am blogging and being frankly honest.  Many people who are crohnically ill aren't this honest about how horrible it really is or how horrible they really feel.  If you ask most people how they feel they will put a smile on their face and say fine.  I am not going to pretend that my life is easy by any means.  My life has been put on hold because of my illness and my families too.  If you read my blog, the very least you should take from it is that you yourself, if you are feeling well, should grab life by the horns.  Go and do as much as possible, smile and be happy.  Because if you don't, there may come a time where you will really have a reason to feel unhappy and you will be sorry that you wasted one precious healthy day doing anything but just that, being happy!  If anything you should be forever grateful that you don't have to deal with the same problems.  And maybe, just maybe if you meet someone who is dealing with something, they may look okay on the outside but you will have a better understanding that things may not be as easy as they seem. Having compassion for others should make you feel better.

My lupus and crohns are both acting up today.  I look like I have been severally burned and cannot put a bra on.  It is miserable.  So, I am in pajamas today and won't leave the house.  I am going to have delve into Lupus and  figure out what I am going to need to treat it.  The first round of options I cannot take are aspirin therapies.  Second round is Prednisone and I refuse to take that.  The third would be the drugs to take to lower your immune system and I have taken many without help.  One being the Methotrexate that is being talked about as the Pediatric Cancer drug that is unavailable.  It was unavailable when I was taking a few years back. It was super cheap but very hard to find.  The expensive drugs are never hard to find. Hmmm.  I do have some topicals but they do change your skin consistency.  So I will do more research. 

Spent all day yesterday at the Clinic.  Basically did every test that I had done before when I tried to join the Trial.  I am having misgivings.  Not sure exactly why.  But after a full day of everything I need to take back a bowel sample and then will find out if I can join this first phase Trial.  If so, then I would have an appointment set for an infusion or injection of the drug or a placebo.  I won't know which.  Then at week 3, 6 and 8 I would have more tests to go and have done and then if I get relief from either the Placebo or Drug I can then go through the whole process again to see if I qualify for the Maintenance Trial.  At which time I would receive the placebo or drug depending on what was originally given me.   I have misgivings.  This is a lot to go through to may or may not feel better.  Yesterday was over the top too much for me.  I came home and went to bed and got up at 10 a.m.  Today I have been a pill popping maniac just to get through the pain. I had to go do something for work and could barely stand up.  The doctor that saw me was kind and gentle and felt bad that I was so miserable.  She also noticed my Lupus was flaring awful, I had that wonderful butterfly rash across my face and broken out in many other areas.  If I had the money I would just go buy Cimzia to try and get some instant relief.  But since I don't and can't I will continue on this route for the hope of some possible free medication.   I really felt like a guinea pig, being poked and prodded and your Trial Nurse doesn't really want to connect with you, just go through the motions.  Even though he really was kind and efficient.  I hate to complain as I am lucky to have this close by to go and try but I still have misgivings.  I suppose if I didn't something would be wrong. 

Hard day yesterday, basically had to stay drugged in order to function.  Sleep was horrible and to get out of bed this morning I had to hold my lower right abdominal area to walk.  I am so ready for some help with this disease.  I am not functioning well at all.  The boys are off this morning to look at motorcycles and normally I would go along, I really don't even care today.  I will be lucky to get some work done.  Might even go to bed.  This is no way to live and I refuse to give in. I will live today again functioning with pain pills and work as hard as I can and hope that tomorrow is a better day.  If I won the lottery I would go have a hysterectomy tomorrow as I know the growths are pushing on my colon and I would pay for Cimzia to treat my Crohns.  But I feel lucky to be able to go into the Drug Trial as it may help and it's free!

So after talking to my GI Dr Bochner, he is winning points with me.  Just taking the time to call me without having to ask means a lot.  Also, have a great Trials Drug Nurse Aaron Pratt.  We have decided to go ahead and go on the Trial.  So back I go Monday to rerun everything, tests paperwork.  I will need to take back another stool sample on Wednesday and then with fingers crossed an infusion the following week.  The first Infusion may be a placebo or Stelara, I won't know.  Then after about four to six weeks I will join another Trial for a regular infusion of the Drug.  This has been a long haul. It was last February that I had to stop Humira due to a reaction of Lupus.  Since then, I have been on a soft food diet and just meandering through each day, taking pain pills as needed but sparingly and being miserable along the way.  Just need a break from this if at all possible.   I saw my GP yesterday and he thought my liver tests weren't all that bad.  My ALT was 59 which is still high but low and my AST was 29 which is fine. So with that news in hand I will move forward with hope of better days ahead.

Had my liver labs done again yesterday, same as last time, still high.  My GI actually called me, I am so impressed.  He suggested Prednisone.  I just can't do it, I feel like I'm trading one set of bad symptoms for another.  He wants me to take for two weeks, said it might help my liver?  Never heard of that.   Wants the tests done again in two weeks.  Suggested again a liver biopsy, I am just not down to go through that.  I go to the doctor today to discuss my Cymbalta.  Hard night, slept with a heating pad, if you call it sleep.  Awake on and off all night and tossing and turning trying to get comfy.  I'm not sure what I am going to do.  Still taking all my supplements. 

Yesterday I decided to start taking supplements.  I figure as bad as I feel, it couldn't get worse.  This is really at my husbands insistence, it's hard for him to watch me suffer.  Back on my Kyo-Dophilus, a non dairy probiotic.  I think everyone with bowel disease should take some form of this.  Fish Oil with Omega 3, Liver Health Complex with Milk thistle and 5 Loxin.  I feel better this morning, I haven't taken a pain pill yet, now this could just be coincidental but since it doesn't hurt me to take these supplements and my liver is too sick to take conventional medication I will continue this route and see if I get significant results.  At this point, I am willing to try almost anything. 

So I can really tell that my liver isn't well.  I have been ignoring this fact and hoping it magically goes away.  My bowel color, upper right pain, especially if I lie on that side and nausea if I take any medication.  But with Crohn's you have so many symptoms that dealing with more just seems like a terrible sick prank.  You try to ignore the things that are not causing you excruciating pain, because the pain symptoms overtake everything else, I can see where things can go undiagnosed with us.  What I am really trying to say is that Crohn's is so all encompassing that the other stuff seems insignificant sometimes.  I sat outside this morning and enjoyed some morning sun as I know that helps some.  I had terrible liver sickness when I was on Imuran, you feel like you have the flu and general malice.  But you feel like that with Crohns too. 

So the Trial Nurse called and said my last Liver lab was too sick to start the Stellar Drug Trial.  Even though Dr Bochner's nurse Jessica told me it was fine.  I cannot trust this person with any of my medical dealings.  Had I known back in October that it wasn't fine I would have stopped another drug I am taking.  So I am now weaning myself off and will go in and have my tests redone this week.  All we are looking for from these so called professionals is the truth, some just don't want to take the time to look and give that to you.  Dr. Bochner thank goodness is going to run my labs again and I will just take it a day at a time.  It would be nice to be able to take something to help with my disease but I will accept the fact that my liver is too sick.  I know he still wants to do a biopsy and I absolutely want nothing to do with it.  I will try and get more sun each day and hope and pray it gets better, even though I know the liver can regenerate itself, there does become a point where it can get too sick to do that.  But until I am sure I will just keep moving and working and dealing with not feeling well. 

After reading a comment someone left I find it very interesting that people think you should be able to take medication and get better, right?   Well, not so easy with this disease.  There is no cure and basically the best thing that can happen is that you manage your symptoms and miraculously go into remission.  Not so for myself, i have never experienced remission since being diagnosed.  I have tried all the hard core medications to treat this disease too.  I'm sure people get tired of hearing about it, I really can't blame them, I get tired of dealing with it. 

My hero is my 20 year old son who faces seizures on a daily basis since the summer before his Senior Year of High School.  He doesn't let it get him down, he forges on and does everything that he wants to.  He is an avid motorcycle rider and racer.  He is the first to say mama do you need a pain pill, you don't look well or is there anything I can do to help you.  He takes medication that really does help keep his ticks at bay but on the flip side makes him feel pretty crummy.  You couldn't tell that by looking at him, you would never know there was anything wrong with him.  He lost his Senior year of varsity Tennis because the school refused to make an exception for him not being able to take full classes soon after his diagnosis.  He loves to work, goes to school and my inspiration, anytime I start feeling sorry for myself, I remind myself of the plight he has taken on at such a young age and forge forward.  I never asked for Crohns Disease and he never asked for Siezures.  If he can do it, I surely can too.

So I am desperate for help and emailed my GI doctor and he actually got back to me very quickly.  I am impressed and thankful.   He is going to see about getting me back into the Stelara Trial.  At this point I can tell that I desperately need something other than just not eating and relying on pain pills to get me through this Disease.  So, I will take any help I can get.   Even though I have a sour taste from the care I have gotten in the past at the clinic, the Trial Nurse is a wonderful individual and very caring and I know she would do anything she could to help me.  So I feel there is some hope and will grab at anything that might help me.

This disease sucks!  It's keeping me from going places and doing the things I would like to do.  I am in a constant state of pain and the reality of it really bites!  Today I cannot sugar coat this disease one tiny miniscule bit.  The pain in my gut is constant and will not budge!  I emailed my doctor to see if I can get back into the Stelara Trial instead of waiting to see if I can get assistance for the Drug Cimzia.  I need help and the sooner the better.  This is an inhumane way to have to live. If I had decent insurance I would go to the ER, although all they could do is drug me up even more and I am getting real sick of pain pills.

Super hard night of pain and nothing would help.  Pain pills, heating pad, nothing.  Just sat up all night and all day today seething in pain.  Seriously, this is a tough way to live.  Pain is draining.  It literally zaps your brain cells and your energy.  You can't help but focus on how bad you feel because of the inability to concentrate to do other things.  Luckily, my family is helpful.  My Family Doctor called and I have an order to have my liver functions tested and need to go in and see him to get a referral for my possible hernia.  Unfortunately, there is an outbreak of Meningitis in our little City and they are wanting everyone to get vaccinated.  Because I am worried about being exposed to this, I am putting off going in and getting this done till this all settles down.  I will go into the small hospital area on Saturday when no one is there and get my blood work done.  I am not even sure with my immune system suppressed if I can get vaccinated and am not even sure I want to.   I quit getting the flu vaccine after getting terrible sick every year I received one.  On top of all of this I am fighting off my sons cold/flu that turned into Bacterial and after three weeks he went in and got an antibiotic to finally clear it up.   I will not be able to get an antibiotic to get rid of this, so I need to fight it off. 

NO one knows what they are doing at the GI Department in the Bend Memorial Clinic.  Seriously, it is so screwed up.  Applied for Cimiza Assistance end of October, told I would be called in a couple of weeks.  3 months later after begging for answer was told it was approved that they would call me last Friday to schedule shipment.  All of this after being rejected for Stellara Drug Trial due to living issues caused by Humira. All the while I am dealing with the same incompetent person at the Clinic.  I was directly told by my Coverage that they would not cover Cimzia and to apply for assistance. My drug coverage for a year is $2,500, not even a half a dose of Cimzia.  This person at the Doctors office assured me I was covered and my copay was $25.00.  Today I finally get a call from Cimzia and I was never even processed for assistance but ran through someones insurance the end of October by the Doctors Office that covered me with a $25.00 copay.  Not my insurance.  Furthermore they talked to someone at my Insurance who said I was covered.  If I want to continue to try and get Cimzia 3 months later, I have to figure out on my own if my liver is healthy enough and then apply.  Phew, am I mad, disgusted, not surprised because at the Gastroenterology Department at BMC they don't treat you like they really want to be bothered to help you get better.  This isn't an isolated event, this is how they function and it's literally pathetic!

I am pretty sure I have a hernia.  It's not uncommon for Crohn's patients to get hernias even women.  Lower right groin is constantly throbbing in pain.  I will have to go into my doctor and have this check out.  If all this new medication idea doesn't work out, I will have to see a pain management doctor.  I couldn't fall asleep last night because of the pain and awoke early because of the pain.  It hurts to get up from the chair or sit down.  Step, stand for any period of time and walk for that matter.  I never thought I would be sickly, I guess no one ever does.  One day you are well and the next day your whole life could change in an instant.  You can think you have life by the horns and everything is going great and boom, it's different for the rest of your life.  Your freedom from being healthy can change in an instant and no matter how hard to you work at making it better some things just can't be changed and accepting that can be a very long, hard and painful process.  No one wants to give up or give in to the fact that their life isn't going to get better.

Sick and tired of being sick and tired.  Against my better judgement I pursued getting an answer from the nurse of my GI doctor.  She admittedly didn't do anything with the request for Cimzia assistance in October, never called back in November, never called back last week.  So I pursued it with a vengeance this week.  My insurance said it was so expensive they wouldn't even cover a half a dose.  She did call back and say I was approved, that tomorrow I would get a call from them (Cimzia Assistance).  The first dose should come in about 2 weeks. It's an injection/sub cutaneous shot.  Two the first day, then again at week 1, 2 and 4.  The first month is around 24,000.00.  No wonder my insurance won't cover it.  I asked if anyone else is on it, unlike what she told me in October, they only have one other patient.  Everyone else is using other medications.  I know of someone who tried it and had an allergic reaction and had to stop.  It does contain mouse protein which worries me.  I have super bad allergies and premedicated for Remicade which also was made of mouse protein.  I probably will premedicate myself for this too.  I asked about my liver issues, I swear it's like talking to a wall with her, she had no idea and so I told her last time I saw him he wanted me to have a biopsy done since my liver was so ill, I would not be comfortable going back on any biologicals without having my liver checked. So I will do it myself by going to my Family Doctor and having him send the results to my GI and check with my GI before taking. As much as I really need help, I want to live through taking the medications. It does me no good if I die from liver failure.  My worry is if I don't do something other than treating the pain and bowel problems the inflammation and fistulas will grow and become a bigger problem the longer they fester.  It really feels like I'm doctoring myself in some sense, no one at that clinic is looking out for my best interests.  So we will see, one step at a time.  If my liver is okay and the Cimzia doesn't work, I will ask to go back on the Drug Trial of Stellara or search Portland for a Drug Trial to join.  I cannot keep living in this pain and put my family through this distress.  Life is passing me by and is way too short to lose this much of my life to this disease.  If I try and all fails, at least I have tried.