So, we had our annual planning/strategy session this weekend. We spend about a day and a half meeting. For me, it means a total upset to my routine. I have to get several hours earlier than I normally would and I have to be ‘on’ the whole time. I take all the notes and participate. We also have our annual conference in November which is the same amount of time only many, many more people with questions and problems. These meetings exhaust me. I start stressing about them weeks in advance and try to figure out how I am going to get through them. Living with chronic autoimmune disease (ulcerative colitis) means that I battle fatigue. Now this is not tiredness or exhaustion this is bone-crushing weariness where you simply feel that you can’t go on. I can’t take pain meds because they have a sedating effect so I am often in pain and then anxious because I am in pain. All of the things that might help one wake up, like caffeine only make my anxiety worse.
Then there’s the eating part. In addition to ulcerative colitis, I also have IBS. Certain things will have me running to the bathroom. I also need to eat slowly so that I don’t overwhelm my body with stuff that’s going to make me sick. Everyone will be done their meal and I will have barely started. I will sometimes continue to eat for a while but people look at you funny when you are still eating your scrambled eggs 90 minutes later. So, I don’t eat much which then makes me more tired. It really is a vicious circle.
This time though, I knew this was my last meeting like this, ever. I was not going to have to put myself through this hell again. And I am grateful. A couple of times I had a few niggles of excitement about some future plans and then sadness realizing that I was no longer going to be there. However, those feelings went away pretty quickly when I felt how bad my body was feeling. I am happy it’s over and the end is in sight. I must take care of myself.
On the cusp of my forties, I was just beginning what would be a decade long battle with ulcerative colitis. I was fatigued, losing blood and scared as hell of what the future held for me. I was struggling to work and do much more than just survive. I ended up taking 6 months off of work (thankfully I could get a 6-month leave when I worked for the government) hoping that would restore some health. It didn’t.
Ulcerative colitis continued to be front and centre. I was hospitalized twice in an 18-month period once because the disease was trying to kill me and the second time because the cure was worse than the disease. Add in 5 years of being bullied at work and I was a mess. I was on anti-depressants for the first time in my life. As well as a major dose of another anxiety drug. I needed to sleep a minimum of 12 hours a night and if I didn’t get it, I had a hard time functioning. Finally in August of 2013 I was off work and not sure I would ever get back.
Fast forward 16 months (not much tell about my time off work because I barely left the house) and I realized that my dream of working for myself was never going to happen. I lack the motivation to do anything unless I have a deadline. I just couldn’t impose them on myself. When I decided to start looking for work, I had to make myself work for 10 minutes on my resume per day. Thankfully it didn’t take last long and I was applying for jobs. I started one in January of 2015.
Now on the cusp of my fifties, I feel better than I have in years. I no longer need 12 hours sleep at night. I actually woke up this morning after only 8.5 hours. My hemoglobin is steadily climbing out of the low territory it has inhabited for years (anemias of chronic disease was the official diagnosis). I am almost off one of my anti-anxiety meds with no increase in anxiety episodes. I have been noticing these little changes and daring to hope they were going to add up to something big. And here we are.
So, I went to the doctor today. She has put me on prednisone which is the two medications I hate the most in the world. Prednisone makes me have crazy thoughts, makes me very grumpy and for some reason, I have trouble eating whilst taking it. I get all the bad side effects and not the one I might actually enjoy. In the past, large doses have messed so much with my blood sugar that I ended up on insulin until I could taper off of it. At least it is only a 5-day course. I am sick of being so sick and I am ready to feel better.
The prednisone is only a short-term plan. I have to go back to see my GI doctor with the hope that I can get on to Remicade with is a biologic medication that treats Crohn’s and Ulcerative Colitis. In the past, pharmacare would not pay for it but it seems they have loosened up some of the restrictions.
Mostly, I feel sorry for Deb. I get really, really bitchy and moody taking prednisone. At least I have some ativan to help keep it somewhat under control!
I had some blood work done yesterday. I am 2 points away from being anemic (explains my fatigue) and my C Reactive Protein has quadrupled since June. C Reactive Protein is the measure of inflammation in the body. It is a relief to know that there really is something more going on than normal.
It has been so interesting watching Stevie Ray develop. The other day she discovered her hackles and her big dog bark when she hears a noise that startles her. I have also noticed that she has become more coordinated. Her default play position is on the ground, usually on her back playing bitey face. This morning she actually play hopped backwards which is something completely new for her. I was impressed! She also seems much more able to run in more coordinated fashion. It is so much watching her grow up and develop – it is not something we get to do very often.
 She is seriously an uncoordinated puppy! Probably due to her breed.
In light of everything that has happened in the last 5 months, of which I have not yet blogged, I am not doing very well. My ulcerative colitis has been flared up since I had a colonoscopy in April. The flare coupled with extreme amounts of stress has left me weakened and sick. I have been unemployed since the end of August and I am really not very much better now than I was then. It feels as though the negativity is peeling back one layer at a time; each layer more difficult than the one before.
I have been seeing my counsellor since the middle of September. One of the things that we touch on all the time is how I have unrealistic expectations for myself that I would not have for others. We have explored where this comes from. A lot of this stems from my abusive childhood where I endured not only sexual and physical abuse but a great deal of emotional abuse as well. Most of the emotional abuse centred on my weight, which I have come to learn, is an immutable part of my genetic makeup just like the colour of my eyes. I was consistently told that I would never be successful because I was fat. In my family the scale measured your worth and I was always found to be wanting.
My family was also extremely volatile and angry. I learned to walk on eggshells at a very young age with my young mind trying to think of things to do for everyone else to keep the calm. Of course, I was never successful but that didn’t stop me from trying. Almost every outburst or argument I would blame on myself thinking that if I had only done this or not done that then the fight might not have happened. I have carried this behavior into adulthood. As I age, I am beginning to learn that I have no control over what other people do or how they react but that doesn’t mean that I don’t still feel I could have done something. I have taken care of people my entire life and it has taken a toll.
My counsellor has pointed out to me that by anyone’s standards I am a success. She has pointed to my educational achievements and job success as examples. But the one job I have never taken on is looking after myself. I look after other people all the time and rarely show vulnerability to those around me.
When I look back over my life, I have never actually taken time to look after myself. I have never really put myself first. I have urged many other people to set boundaries and to look after themselves. While I have played at the edges of true self-care, I have never really taken the plunge. At my counsellor’s urging, I am taking the plunge. My job for right now is to look after myself. It means sleeping as much as my body needs to, removing unrealistic expectations and really allowing myself time to heal physically and emotionally. What a radical concept. Please wish me well as this will not be easy.
Today is one of ‘those’ days where I feel like unmitigated crap. I shall be back tomorrow though with some great post. This post has been brought to by ulcerative colitis and other autoimmune diseases.
I realized the other day that it has been 7 years since I first started to show symptoms of ulcerative colitis. This disease is very difficult to live with as it interferes with digestion, can cause major blood loss and creates a great deal of fatigue. Here is a brief synopsis of the ulcerative colitis events in my life. Keep in mind that every day has been a struggle to deal with fatigue, pain, random fevers and ‘digestion upsets.’
June 2005 – I had a number of symptoms that were strange. Mostly it was mucous, blood and thin ribbon-like stools. I was also spending more time in the bathroom than usual.
December 2005 – I had my first colonoscopy. It was negative for any sign of ulcerative colitis. My symptoms had also stopped.
February 2006 – the symptoms come back with a vengeance. Lots of pain, diarrhea, mucous and blood. My doctor started me on Asacol, which is a first-line treatment for ulcerative colitis.
July 2006 – I saw my first gastroenterologist. He says I likely have ulcerative colitis and says I need a colonoscopy. He then shut down his practice before I could be scheduled. I didn’t know this so I waited 18 months as my symptoms worsened.
October 2007 – I finally see a new gastroenterologist. He decides I don’t have ulcerative colitis based on one symptom of Irritable Bowel Syndrome – which I also have. He took me off all ulcerative colitis medication and I became really sick. When I finally had a colonoscopy a month later I had really deteriorated. I had active ulcerative colitis in 1 metre of my colon. He was extremely condescending and rude to me. When I asked him about going on immune suppressant drugs he said he would never put me on that medication.
November 2007 – I developed an immune response called pyoderma gangrenosum. It caused what looked like an abscess by my eye that had to be lanced and then a huge abdominal wall lesion that eventually measured 10 cm by 10 cm. It was extremely painful. It took more than a month to diagnose. During that time they hit with me intense antibiotics that, in the end, did nothing. It was only after a wound care nurse figured it out that I was appropriately treated with steroids.
January 2008 – I ended up in hospital for 2 weeks. I had dangerously low potassium levels due to diarrhea. I also had very low hemoglobin due to constantly bleeding. I was also in extreme pain. I ended up on prednisone for 6 months and huge dose of morphine that I then had to wean off of. I could not work for 6 months.
November 2009 – I ended up in hospital again as my immune system had been wiped out by Imuran. I was in for week. I had 2 blood transfusions and spent time in reverse isolation. This is the closest I have come to dying. Literally.
July 2011 – I needed to take a sick leave for about 2 months. I was exhausted and really struggling. Likely it was all due to stress.
I have been back at work since mid-September of 2011. The last 6 months I have seen a steady improvement. I have been looking after myself very well. I am wondering if the addition of kefir to my morning smoothie is helping. Some people have had success with repopulating their digestive tracts with good bacteria. I have tried this with Florastor and VSL #3. Perhaps naturally occurring bacteria from real food is better? I hope the upswing continues. I would love to have my life back.
 I had colon spasms. I have always had them. Apparently, in his mind, this meant I didn’t have ulcerative colitis.
 Ulcerative colitis is believed to be the result of an overactive immune system attacking the colon. Immune suppressant drugs help to control the immune system.
 Everyone coming to see me had to gown up except for Deb. They let her do what she wanted.
Ruby (aka Tuber) is doing so much better. Some of you may remember the post I wrote a couple of months ago: Fixing Ruby. Ruby had never known that human beings could give her good things in life. She has come so far. Gone is the sad little dog who wanted to hide in her crate all the time. We now have a bright-eyed confident little dog. Her tail is up and her ears almost stick straight out from her body. She loves life. She is following in the tracks of many dogs at The Swamp who try to kill the humans by sticking so close to their feet that we trip over them. She goes to the park and enjoys herself immensely. I would regale you with pictures but she hates the camera.
My health has really improved lately. Sticking to a routine has really helped my fatigue levels. I no longer sleep in on weekends. I used to sleep 12+ hours on the weekend just to be able to work all week. This morning I was awake and up at 8:30, which is early for me. Clearly all of the things I have been doing to look after myself have worked. Getting back in touch with the things that make me happy and contented was a good plan. Luckily, I will likely never run out of things to crochet for people. I have started on a new Realta afghan for my best friend Joe. I am making it queen size, which means it is roughly 4 times the size of the last one.
Piper has lost 2 pounds! This is ½ of the weight she needed to lose according to the vet who did her soft-palate resection last year. Her breathing is so much better even in this heat.
The rest of the dogs are doing well. Ruby and Zoe are hardly coughing at all now on their Lasix. Kiefer seems to surviving the heat ok. He likes to lay on the cool tile by the front door or in the living room in the shade. If it gets much warmer I will have to set up the air conditioner in the living room for him. Sawyer is still cold. He is always looking for a blanket to go under.
 Tuber as in potato. She is about as bright as one. But she is sweet, so very, very sweet!
 She still won’t sleep anywhere unless it is a dog bed.