Every day we wake up – if we have slept – to fight another day. Each daily task exhausting.

Getting up, getting dressed, making food, making a bed…..so simple and without thought for so many, but for us, a battle to be fought.

We put on our armour, just like soldiers. Shield ourselves from the silent disapproval or disbelief of so many. Hide from our emotions or the visible emotional effect we have on those we love.

Seek cover from the assault of failure, that comes from just our sheer existence in pain.

We prepare for battle with Doctors, Hospitals, Employers and Family.

We treat our injuries any method we can;  with resources, either available or affordable.

Lick our wounds in private, so no one will see our pain and suffering.

Feel the rot and sickness on our insides, but the outside looks normal. So who is to believe our pain?

We lose sometimes……not having the energy to even get up off the couch or out of bed. Not wanting to survive anymore in this constant burning state with minimal relief ever. Tired, so very tired of the pain, of watching others affected by our circumstance. Not wanting to hold them back in their own battle. Sometimes, just sometimes wanting to be left behind….wanting to be put out of our misery.

Sometimes we win…..we have a day without pain. A day we are so very grateful for. A day where we push ourselves to far, because we want to suck up every second of the pain free moments. To feel like we are human, normal, beautiful and strong …..instead of sick, weak and ugly.

No parades for our battles.

No memorial for our losses.

 No fanfare for our successes.

Blame, ignorance, cruelty, anger, sadness and pain that is recognized. Which leaves us so alone when we win.

Our losses evident – wins silent.

The solitary life of a Painie. We are lonely, sad, misunderstood and sick.

We are also people who we should be proud to be who we are.

Just the days we feel good, we appreciate more than those without pain.

We recognize kindness  as genuine, loving and true more than the average person. Those who have given to us, have done so without reward or medal for standing by us every day. They just do.

We can appreciate love more than most. It takes special people to truly love us.

We are granted humility, patience, understanding, empathy. Others are not so lucky.

We are the silent warriors, but we don’t fight the battle alone.

For almost a decade I have suffered from Chronic Neuropathic Pain. In that time, I have had 2 small children, run my own businesses and dealt with many family crisis. Now things seem calm. I haven’t worked; as financially I don’t HAVE to, it would be a lot easier if I could work. However, I am not sure even what I want to do. Even as I type this, I feel the pain starting to set in. Which means that I can’t commit to anyone full time as I have my bad days which an employer wouldn’t really appreciate. Besides all of that I am not sure what I could do.

It seems lately I don’t have the ability to concentrate or have any gumption. I was always filled with gumption, but it is a character trait now lacking. It is both physical and emotional energy.

Prior to the Fall of 2012, I was always reading, writing or creating. I filled my mind and time with various activities. Now I seem to be in a haze. I don’t care as much about ensuring I get my medication. I don’t seem to care as much about pain spirals. It is almost like I expect them now and enduring them is comfort. Does that sound weird or what?

I am too tired to go to another Dr. I am too spent to go to another clinic. I am too jaded to trust yet another treatment plan. Even though I am getting better; at least I look better and my pain seems to be more manageable; I feel so …… I don’t know…..exhausted.

Over the past few weeks I have been able to sleep. It is one of the things I have missed most through my pain. I think I am addicted to sleep. For the first time in years, I actually feel comfortable in a bed. I wake up and it isn’t pain. Then I will slide back and start vomiting and suffer extreme pain bouts and I feel like 2 steps forward and 1 step back. Maybe that is why I feel so exhausted by life, I am catching up on 9 years of sleep deprivation.

This weekend I had a dinner party for a few girlfriends. Everything seemed to go well, except I had nothing to contribute in conversation. I don’t have a job and my basic communication is with my Painie community. It is challenging to come up with interesting anecdotes when your whole life is within 4 walls.  I am awkward and I stumble on my words or I can’t remember threads of conversation. It is like the pain has entwined my basic brain synapses and has choked the interesting right out of me.

Reading books – one of my most favourite things to do – I am unable to do. It seems I lack the ability to concentrate long enough. Television is one of the few things that distracts me from the pain both physical and emotional.

Basic simple tasks of life, seem to be almost overwhelming. I start something and  lose focus and go in another direction. Energy is just sapped right out of me. I am not sure why my Mo-Jo is sagging.

I miss having my Mother-in-Laws’ cheerleading. She always made me feel worthwhile even though I am not sure why or how? She was my anchor always giving emotionally and not requiring much in return. I hope I made her feel that way during her illness. She is gone and there is nothing that can fill that void. Is it just that I am in mourning or is it time that I accept this is my life?

My children are cusping on adolescence and I know that there are some hormones going on, but I feel like I am losing them. It is normal for them to move away from me in some form, that is part of growing up, but I am not ready for it. Is that just part of the pain syndrome or is it normal? I want to be around them more, but they are now doing so many physical things I cannot do. I used to volunteer more at the school, but this year has been one filled with so much chaos that I have been unable to. I wish I could do so much more for them.

During the Fall (when my mother in law died) some family members made comments about my pain that stung me deeply. Two comments severely damaged my confidence the first “Always about your pain, it is always about your pain”  the next was “just suck it up, just suck it up”. In stressful times things get said that cannot get unsaid. Even though they didn’t mean those words to come out of their mouths, it is how they have felt about me the whole time. As many of you Painies know, when people don’t believe your pain it can hurt more than the pain itself. My response to those comments were; “I know you don’t understand my pain because you don’t see it. I don’t let you. I go into hibernation and stay away from people. But that doesn’t mean it isn’t real.” I thought these people would be somewhat empathetic, but I guess not. There are times when that final punch is a knock out. These comments hurt so much because it pulled me out of my little bubble of denial and made me see me as they do. They think that I am a liar or making it up. Even after all I have gone through, my pain to them, is not real. It makes me feel so alone; especially without my Mother-in-Law around to hold my hand.

My husband is there for me, but he has so much to deal with on his own. He is struggling so much with the loss of his mother, the chaos of his family and being with me. My uselessness is exacerbated by the fact that I do not know how to help him. Every cell of my being is being sucked up by just existing right now that I have nothing left over. I am sad  I cannot support him as much as he has supported me. I watch his pain and him having to pick up more of the responsibility because of my sporadic relapses. The comments previously mentioned have driven such a wedge between all of us, as he is very defensive of me and I am just not strong enough to engage at all. I wish that I could reach out and take all of his pain away.

It is like layer upon layer upon layer of stress is burying me with a heavy weight. I am not sure how to navigate my way through this, I just don’t know which way to go.

Is it just that I should accept my pain?  This will be my life. If so, then what type of life is it? I have always fought to make sure that things would be better. Now……I am not so sure. If you could call me a colour it wouldn’t be blue it would be grey. I am trying to find my footing, but not sure in which direction to take or how to proceed. I don’t want to accept that this is my life, but I am just so tired of everything. Depression is part of pain conditions and the mourning process, but there has to be something that will make me turn the corner. There are people with way worse illnesses than mine and situations than mine. I know  I am blessed in many ways; I have a roof over my head, food on the table, a wonderful husband, great kids. I just can’t shake the sadness. Any suggestions?

Try to pace yourself, ignore the well meaning comments that don’t help, take deep breaths and Remember what this time is all about. It is to share love, peace, understanding and giving.

We try to give through toy drives, gifts to World Vision to a charity of your choice. Something that will make someone else benefit, while at the same time making you happy. It is a warm feeling to know that you are paying forward. Mauve even a gift certificate to you friend ” one hour to listen just to you”.

No matter your colour, creed or religion, this time of year is about giving not receiving;and we would all do well to remember that.

Even A small donation to the local food drive, would be welcome. A full tummy is a world of fun to a parent with a hungry child.

My favourite thing to do each year or to buy toys for the Firefighters toy drive. My youngest loves dropping them off. Plus she gets to see a real life Firetruck. Buying mitts, hats and blankets for street people in Canada is awesome.

All I want for Christmas is to know that my blog and Facebook group are helping my fellow Painies and it gives them laughter, empathy, some fire and strength. If this is true it is more than I could ask for.

Have a wonderful season and are getting ready for a new happy healthy painfree New Year!!!!

1. Pace Yourself: Recognize a frantic pace cannot continue. In any crisis, break it down. Make a list of what needs to be done, prioritize and work the list. Putting the situation into small manageable tasks, helps reduce stress which will lead to harsher pain. Focus on one thing at a time, let things go if they are too overwhelming for you and get back to them later. Take breaks and reassess as needed.

2. Set Boundaries:  Don’t be afraid to say no. It is ok to admit you can’t do something, simply because you are a Painie and it is not possible. It might feel cutthroat but it is essential. I had to be very forceful about keeping the house limited in the number of people. Too many people staying there or around – was too much for my system. Many didn’t understand that. They thought I was being difficult, but I really wasn’t trying to be, I just knew too much noise or activity (as you Painies can only know) would set off my Central Nervous System and I can’t get it back under control for days. I didn’t have that luxury.

3. Ask for Help:  Delegate some tasks, use other resources, talk with friends, vent out your concerns or emotions with someone you trust. Don’t feel guilty for having people help you, you need it and people like to help – I really think they do.state I had 2 friends that helped me so much you can’t imagine. One drove me to the hospital (2.5 hours away), leaving her groceries literally at the checkout. She stayed at my house for 3 weekends in a row to care for our dog. My other friend got my kids ready for school every morning, ran interference for me, fed me etc. They both went above and beyond the call of duty and I am forever grateful for their support. I could not have possibly done that without them. It was amazing. This is also to say, we as a family, could not have survived if we had not asked for and received help from many sources. The kindnesses from so many were amazing.

4. Rest:  Go to bed early, take quiet hours, turn off the phone. Let some peace be around you while there is a hurricane outside. It will keep your energy level up and your pain levels down.

5. Eat or Eat Well: I tend not to eat during stressful periods. I had to force feed myself small amounts of food and drink water. If you tend to eat too much when stressed – try to snack on veggies or healthy things. I know this sounds trite, but chemicals, sugar and preservatives can make pain levels rise. Bad food also hurts your digestive system and you can’t get the crap (literally) out of your system. This will build up and hurt you more – so don’t do it. Easier said than done, I know, but trust me it is true. Besides – people bring food in a crisis – eat it.

6. Manage Your Medication(s)/Treatment(s): Meet with your Dr. (this is what I did) and discuss your current situation and work together as a team to manage your pain through the ordeal. It is important your physician know what the scoop is.  I was very lucky that it seems my system is so much better than 2 years ago that meds weren’t an issue. However, I know that as pain levels rise and demands on you increase – Painies tend to “suck it up” take more meds and ride it out. Be careful as there are limits to what you are going to get and repercussions in the aftermath. However, don’t not take your meds because you are scared of that. Work with your Doctor to find the best plan for you.

7. Have Patience:   Many people still don’t get what it is like to be me. I never show what the aftermath is – I hibernate. If I have a bad pain day – I will withdraw rather than be with people. This has an effect, because as pain is invisible and I don’t show it, it is confusing. Thought I was being a “B” or exaggerating or being selfish. Some people felt I wasn’t being supportive of my Husband, Father in Law etc. because of the boundaries I had to set to keep me together. Even though, I found not being understood very painful and have been deeply hurt by some things said about me, I have to remember they just don’t get it. I hope they never do. I can’t take it personally, even though it is hard and I still feel the sting. I have to try to let it go, some people don’t have sympathy in this regard. It isn’t their fault, they just have never experienced chronic invisible illness. Holding on to the hurt can cause you more pain – both physically and emotionally – so try to let it go. Also, people handle things differently, there are the Copers and the Non-Copers and you must have empathy for their feelings; even though it might not be helpful to you or understandable, it is how they deal. So just take a deep breath and move on.

8. Find Your Inner Strength: Every night I would walk down to the lake with the dog and breathe deeply……and cry. I would talk to my Mother In Law and ask her to guide me to where and what I was supposed to do. I would dig deep to find the person I was before the pain and follow the changes in me during the pain. I recognize that just by living like this we are strong, stronger than most. If we can deal with agony, burning pain, electric pain, throbbing pain, piercing pain, nagging pain and all round discomfort every day……we are strong. We are built to handle these things and we can help others through it by leading the way; or at least walking beside them. It is ok to feel the sadness, anger, frustration, anguish and fatigue. It is part of the process.

9. Don’t be Embarrassed About Requiring Special Things: The memorials were outside in a tent, with folding wooden chairs – we know what those do to us. I had to have a big white wicker chair with a big blue cushion put in the front row. I also had to have my hot water bottle (my blankie as it were). I am sure some people were like “Huh?, Why is the Daughter In Law in some massive chair – while everyone else is in a folding chair” Don’t bother explaining, use whatever tools you need to cope with the situation. I mean it could be worse; you could be giving a Eulogy with your fly down or your skirt tucked into your tights – that would be much worse.

10. Find The Good In The Situation:  Even though you feel like the world is falling apart, good things come from bad situations. In my case, we were able to raise over $10k for the local food bank. One restaurant GAVE us the food for the first family memorial. Rifts in the family, fell away and there was reunion and forgiveness. There were so many generous people who offered shelter from the storm, food and shoulders to cry on. Bonds between some of us got stronger. Her death had no pain, suffering or lingering. She died on a sunny day, with friends, in the arms of her husband. She stayed long enough for her children to get a chance to say goodbye. I mean, if you are going to go, isn’t that a pretty good way to do it? Finding the positive will help you cope with the sadness and loss.

Not one of us gets out of this alive, we know that. I know I cannot bring her back. I know I will miss her every day. I am grateful her death had no pain, suffering or lingering. As Painies we understand what that means. We live on the cusp of suffering and darkness all the time and loss, stress and sadness are things that affect us differently. However, though we suffer every day we still have to live our lives and get on with it. I think these strategies helped me and are applicable to any type of crisis. I hope they help you; because sadly these things happen and your pain isn’t going to let you go.

My Great Grandmother always said “Just do your best, that is all I can ask” and she was right.

In September my Mother in Law passed away suddenly from a brain aneurysm. She was a lovely woman who unfailingly supported me through all these pain years.

I was lucky to have known her. She taught me compassion, charity, empathy, kindness and love.

She was my biggest cheerleader. For us Painies we know what it is like to feel so alone. Not once did she ever doubt or criticize me.

Over the past 2 years, she had not been feeling that well. Fatigue was taking her over and she wouldn’t go to the Dr. Finally, after prodding and pushing from her friends, she finally got help. She had kidney stones that were ripping her kidneys apart. After two surgeries, she had been feeling much better.

After her second surgery we went on a “family reunion” vacation. There was a bunkie that she and I stayed in. More like a small cottage, but we called it our Convelescence Cabin. We didn’t have the energy to keep up with everyone else, so we stayed back. I am so grateful for that time. For the first time in her life, I think she felt her mortality. We talked about what would happen if she died. We laughed about who would take care of my Father in Law, but mostly we made promises to each other.

I told her how I really felt about her. She was the only mother I ever had. That she was a lovely, kind, wonderful person who gave me everything I could ever ask for. She gave me my husband and of course the kids. She taught me how to love and how to be loved. I didn’t trust that at first. I was always waiting for the other shoe to drop. It didn’t.

I have never seen a grandmother love and care for grandchildren like she did. Each one of her 5, were precious to her. She appreciated all their individual personalities and quirks. She built snowmen, took them to the park, read to them, gardened with them and played with them. Most importantly she knew them, I mean really knew them.

She was married to my Father in Law for 48 years. They had a unique marriage, in that it was traditional, yet not. They adored each other. They had a mutual respect and a rythm that worked. They set an example that is hard to match I tell you.

I miss her calls, her voice, her support and her friendship. It is rare in our situations to have one person that never lets you down. She never did. She was my biggest cheerleader and support system. I am not sure how to proceed without her. I want her back.

Physical pain sucks, but emotional pain is worse. In my darkest days when I didn’t want to continue, she would be there to tell me a joke or a silly story. Sometimes it was as  simple as a hug. There is a hole in my life, that I don’t know how to fill.

Loneliness, misunderstanding and isolation are things we Painies endure endlessly, it is a large component of our situation. One that gets overlooked too often by friends, family and physicians. One of the reasons I started this blog was to be able to try to reach out to those who felt like I do. It has been able to allow me to survive this pain. I just wish I still had her to be here too.

Please check out the video – pass along and would love to get some feedback. 

If there are any topics you would like to hear about – please contact me via Comments. 

Hope you are having a Pain Free Day!!

http://youtu.be/V9WXA_-MamU

just click on the link

Filed under: Chronic Pain Tagged: chronic pain, how to make a pain journal, pain, pain journal, tracking an illness, YouTube ]]> http://chronicpainjournal.wordpress.com/2012/09/14/1092/feed/ 1 kathleenhogg http://chronicpainjournal.wordpress.com/2012/08/01/pain-sucks-set-backs-and-obstacles/ http://chronicpainjournal.wordpress.com/2012/08/01/pain-sucks-set-backs-and-obstacles/#comments Wed, 01 Aug 2012 16:49:32 +0000 kathleenhogg http://chronicpainjournal.wordpress.com/?p=1086 Continue reading →]]> Hi there readers – it is me – I know I haven’t written in a while and here is the reason why.

I am doing Hormone Replacement Therapy (HRT), which includes Progesterone and Testosterone doses daily. In the Spring my Naturopath upped my Progesterone dosage as I still was not able to sleep through the night. By this I mean I would sleep for 45 minutes at a time. Or I would not sleep at all for 48 hours. This is not an exaggeration.

Through my other treatments I could feel my pain getting better, but the lack of sleep and then these urinary tract infection symptoms – would send my system into overload. I would be feeling great and then all of a sudden BAM!!! Up all night peeing every 40 minutes and it hurt. I was nauseous and then would start vomiting, which would last non stop for 24 – 36 hours. Then fatigue and exhaustion and the switch gets flipped and my pain gets out of control.

I had to go up on my medication severely – which was depressing and horrifying, but I seriously couldn’t deal with the pain. Everything I did was an effort and my girlie area was on fire. Even making a phone call or checking email was an overwhelming experience. I couldn’t understand what was happening. My GP was getting sketchy about my medication – as I am sure you all are familiar with – but I was trying so very hard to get off them – I was so close and then ripped right out of my hands. 4 rounds of antibiotics and still my urine tests weren’t showing infection – but I knew something was wrong.

Book with my OB/GYN who is also a female Urologist – but I have to wait to see her. I go on Vacation with my family and read the NEW progesterone drug information package and it says:

Side Effects: Burning/Painful urination, breast tenderness, depression, nausea, vomiting etc. Also – Prometrium can affect the urine tests. Also can be harmful if taken with any medications that affect Liver Enzymes. 

UH?????? WHAT?????? So it seems that this hormone therapy has been giving me the problems and the dosage that was being upped. I decided to not take any until I see my OB/GYN and have her Look See into it.

In the mean time – I have to get off these meds. My children were gone for 2 weeks and I knew that if I was going to do it – I was going to do it then. I took more than prescribed for my sleeping medication to push myself off my narcotics. It was a sucky two weeks. I was puking, not sleeping, burning urination, etc. etc. But I knew that I could suck it up and get through it as my end game is to get off these freaking medications. I also did NOT WANT MY CHILDREN TO SEE THIS. They have to deal with enough and it was hard enough to disappoint my husband with our only 2 weeks alone.

This of course, has freaked my GP out and he now says “I am going to refer you to a Pain Clinic”. Ok – well I am at a pain clinic – that is working – we have just hit a speed bump. I appreciate that you have licensing issues – but this was a one time deal to remove narcotics from my daily menu. I also am paying a fee for this clinic to manage Chronic Illness. So – what then? Even if I get referred to a Pain Clinic – all they are going to do is give me more drugs that my GP is going to have to manage anyway and I don’t want more meds. I want to get off the ones I am on.

Yet again – we Painies are misunderstood. Instead of looking at why – or for that matter meeting with me – I am just getting the brush off again. It is so frustrating. I feel like I have to diagnose myself – because I tell the Dr.s my symptoms and they keep saying – Oh this is a good thing your body is purging. Oh you had an infection. Oh you had the flu. Obviously I didn’t and again – even though I am being proactive and telling them and asking them for help – I get the brush off.

Anyway – now that I have lowered my meds by 75% in 3 weeks – I am finally starting to feel better. I have had some sleep. I am up with my kids. My pain is manageable. But do you think that they will see the progress or the effort in getting help – or just the prescription pad? Who knows. I have to say that last 2 weeks were probably the darkest time I have had through this whole illness. I didn’t want to exist anymore – not that I wanted to die – but I was too tired to face another day of punishment for God knows what? I was just so tired. Then have your Drs. freak and you just feel hopeless.

I am off to Georgian Bay for 3 weeks and hope to have more healing by then. I know I am getting better – I just wish I didn’t have to treat myself and I could get listened to. Why has the system made it so that Dr.s are more scared of the Government than treating patients. I understand the issue of medication – but if you are trying to get off them – why not listen to what your patient is saying.

I have spent over $40,000 of our money on alternative treatments and health care. I have been to over 22 Dr.s to try to find a solution. Each time I am baffling to the Dr.s. Only since I got the proof

I needed – $3,000 to pay for a private Health Assessment – that showed I was getting Cushings Disease – which I had been saying for 2 years. Then went to a Naturopath – through my existing Pain Clinic – that I got results. In 2 years I have had the following changes.

- lost over 65 lbs

- body temperature regulated

- drenching sweats gone

- bloating gone

- reduced pain from all over all-encompassing – to more finite and definitive

- total insomnia to moderate insomnia

- improved focus and concentration

- libido improved

Aside from this little speed bump of the past 3/4 months, I am getting better. So why ship me to another pain clinic? To do what?

OK enough of my rant. I just wanted to let you all know that I am now going to do the rest of my convelasance in the healing waters of Georgian Bay with my beautiful children, awesome husband and neurotic dog. I am hoping that I will be able to rid myself of more of the medication – but I also know I have to be patient.

Talk to you when I get back and wishing you all a Pain Free Month.

Ok, if I ever had any doubts about my Gluten sensitivity I don’t now. 

During this bout of illness, my husband (God Bless Him) was in charge of food for the family. He and the kids are not on the Gluten Free diet – but when I cook for us – it is Gluten Free. With me not being able to eat – he was making Gluten Full food. He purchased snacks all filled with Gluteny Goodness.

You all have had the feeling where you have to eat something to quell nausea- sometimes it is just soda crackers – sometimes it is greasy, crappy food like McDonalds. If I do the shopping, I buy myself Granola, crackers and snacks that are Gluten Free. There was nothing in the house.

I hadn’t eaten in so long; I was craving something basic – I chose poorly. I ate 2 oatmeal/chocolate chip cookies and a chicken nugget happy meal. I ate only 3 nuggets. I went from being almost (almost) my old size – to being a Fatty McButter Pants. It was crazy beans.

My youngest started to pat my stomach and said “Look Mummy, your tummy is a trampoline again”. I was amazed. It was insane.

A few weeks I was at Costco – looking at sport skorts. I need to have soft fabric and elastic waist due to my burns on my backside from my hot water bottle. The lady at the store said “Oh, sweetie, we just got some new ones in over there. The sizes you are looking at are medium and large sizes. You need the smaller ones.” Do you think it would have been strange if I had thrown my arms around her and gave her a kiss on the cheek.

Then I spend a few weeks sick, vomiting and loose additional weight. Although I wasn’t feeling great physically, psychologically I was happy to be somewhat skinny again. I cheat a bit on my diet and all of a sudden BLAMMO, I am swollen again.

Any second guesses I had – are gone. Gluten is not my friend. Which makes me sad about the loss of chicken nuggets, soda crackers and Gluteny Goodness. Oh well, one more thing I can’t have – so another article will include some substitutes for these holes in my tummy.

Filed under: Chronic Pain Tagged: chronic pain, Coeliac disease, Costco, Food, Gluten, Gluten Free, Gluten-free diet, McDonalds, pain and diet, pain and nutrition., Special Diets ]]> http://chronicpainjournal.wordpress.com/2012/05/17/gluten-reaction-it-isnt-a-joke/feed/ 2 kathleenhogg Gluten Free Series http://chronicpainjournal.wordpress.com/2012/05/11/sick-of-being-sick-jeez-louise/ http://chronicpainjournal.wordpress.com/2012/05/11/sick-of-being-sick-jeez-louise/#comments Fri, 11 May 2012 18:53:46 +0000 kathleenhogg http://chronicpainjournal.wordpress.com/?p=1064 Continue reading →]]>

I have not written in quite a while, as I have been in bed. You would think that every woman would want a life of leisure, resting quietly, reading, thinking…..well guess what it sucks.

I have been doing a procedure called BioPunctures. It is a series of injections around areas of injury. That along with my other naturopathic and western treatments has left me exhausted.

Flu like symptoms, fatigue and a bout of vomiting that lasted 48 hours. Now, I know that I have written about my weight issues and  I can’t stand what I have gained, but seriously do I have to lose it like this? I think 10 lbs has been lost; at least.

I have a bladder & kidney infection. I am on my second round of antibiotics as the first one didn’t work. I think I have had this infection for a very long time. My pain medication has masked the pain of the infection and my constant insomnia for years distracted me from the fact that I had to pee every 15 minutes. That plus being on my detox program – I just thought that all the bathroom trips were my system ridding itself of toxins.

I am sick of blood & urine tests. I am sick of having to ask for them. I am sick of being in bed. I am sick of being tired. I am sick of being sick and tired. I want some freedom from illness. I just need a break.

I have caught up on all my tv shows and added some new ones. I have read a lot of books; including the Hunger Games series. Which is quite good.

Lounging around isn’t my idea of fun. My energy reserves are completely tapped. Resting is what I need, but I am fed up. It is hard to imagine a life without pain now, but I have to believe that it will happen. Will it be over soon? Hoping so……just hoping so.

Filed under: Chronic Pain Tagged: chronic pain, fatigue, health, illness, neuropathic pain., rant ]]> http://chronicpainjournal.wordpress.com/2012/05/11/sick-of-being-sick-jeez-louise/feed/ 5 kathleenhogg A sick cartoon Pig Complete with orange juice ... http://chronicpainjournal.wordpress.com/2012/03/21/gluten-sensitivity-vs-celiac-disease/ http://chronicpainjournal.wordpress.com/2012/03/21/gluten-sensitivity-vs-celiac-disease/#comments Wed, 21 Mar 2012 19:15:19 +0000 kathleenhogg http://chronicpainjournal.wordpress.com/?p=1019 Continue reading →]]>

As a continuation on the Gluten Free Series it is important to understand the difference between Celiac Disease and Gluten sensitivity.

Let’s start with Celiac Disease and what it is. The exact cause of celiac disease is unknown. The lining of the intestines contains areas called villi, which help absorb nutrients. When people with celiac disease eat foods or use products that contain gluten, their immune system reacts by damaging these villi.

This damage affects the ability to absorb nutrients properly. A person becomes malnourished,  no matter how much food he or she eats.

The disease can develop at any point in life, from infancy to late adulthood.

The symptoms are varied and non that specific from what I can tell. Here are some; bloating, anemia, chronic diarrhea, weight loss, fatigue, cramps/bloating, irritability, dermatitis herpetiformis – intense burning and itching rash

Here are some links that provide more detailed information:

Celiac Disease Links

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001280/ 

Canadian Celiac Association - this one has the most information

Health Canada

National Digestive Diseases Information Clearinghouse

Gluten Sensitivity is not the same as Celiac – in that the removal of Gluten from the diet is not permanent. Also with Celiac the smallest amounts of wheat/gluten ingestion can cause a reaction. Gluten Sensitivity can present the same symptoms though, such as bloating, indigestion, headaches/migraines, muscular disturbances, joint pain and other symptoms.

According to the Canadian Celiac Association there is no definitive test available to diagnose this – but if one notices changes after removing Gluten – then one can assume that there is a sensitivity. You can also ask your Dr. or Naturopath if there are any tests that might indicate an intolerance.

It is thought that 15% of the population or 1 in 7 have gluten intolerance.

Gluten Insensitivity/Intolerance Links

http://gluten-intolerance-symptoms.com/gluten-intolerance-test/

Gluten Free Network

Gluten Intolerance .ca

Gluten Intolerance Group

My opinion on why Gluten/Wheat sensitivity is here:

• Okay so for my own interpretation and please take it as this, I think Gluten Intolerance makes sense for me. It is pretty easy to figure out if you have an intolerance or not – just remove gluten from your diet for about 6 months. This means no wheat products at all and then see what happens.
• I asked my GP who is also a Gastroentinologist – why does Gluten cause these problems. He said that currently Gluten is the buzz word, but in fact, we as a species shouldn’t be eating wheat. It is a processed food that biologically we aren’t supposed to ingest. Like milk, we are technically supposed to only drink breast milk and then we are weaned. No more milk. Yet, we do.
• We consume too many carbs. Look at the size of muffins at Costco – you could feed a family of 2 on one of those suckers. They are just too prevalent in our diet.
• We eat too many processed foods. Especially in a bad economy a box of mac and cheese is affordable, filling and easy. It is harder and more expensive to create a menu with meat/fish/chicken and vegetables than a processed dinner.
• Genetically modified crops. In order for farmers to survive they need to produce crops. These crops have been genetically modified to produce more, be disease resistant and stand up against the elements. How can all this tampering with nature be good for us?

Again, that is just my own opinion. From some of the folks I have talked to who have either removed or dramatically reduced gluten have felt a lot better.

Here is what it has done for me in 9 months

• my body temperature is regulated – I am not steaming hot all the time
• I don’t look pregnant, fat or bloated anymore – I look more like myself
• improved energy
• I have my period back – although not having it was one of the only benefits of being sick
• my face isn’t red anymore
• I don’t have the sweats
• I am beginning to sleep a little better
• I have more energy

While these improvements are probably a combination of all my efforts, losing the bloat has been the best thing.

I will continue this series with more info in the following weeks.