I am not feeling well today. I didn’t get enough sleep and I seem to be having random fevers. I will be back at it tomorrow. See you all then!
Since I became sick back in November I have had difficulties eating. At first I attributed it to the flu that I had. However, things have not changed much since October. Many of the foods I enjoyed before I no longer like. I used to love eggs, I ate them almost everyday and I can’t stand them now. I used to eat bacon on the weekends, doesn’t do a thing for me.
I am really not sure what has caused this to happen. My colitis is bad but it has been worse before. I can’t seem to any meat other than chicken. I ate 1/2 a pork chop yesterday night and it was too rich. I used to have no problems with pork prior to getting sick. Same with beef. I am afraid to eat it because it will most likely mae me sick. My diet has been limited to soup, little appetizer things and ensure.
My fear is that I don’t have colitis but rather that it is Chron’s disease. I am seeing my new gastroenterologist later January. Hopefully I will get some answers. However, I will likely just get an appointment for another scope.
Fuck. I don’t know what else to say. My hemoglobin dropped another 10 fucking points over the weekend. I am eating iron-rich foods. I am taking iron supplements. I am resting. What the fuck else is there to do?
I called the hematologist’s office and only got a message back from her secretary basically saying that she would not consider looking at a transfusion until I see her on 16th of December!!! So, I called back, and in my professional voice (meanwhile, the tears are right at the surface) advised them that this is not ok with me. What the hell am I supposed to do. I need to have a life. I went to work today and lasted until the end of my eggnog latte. Then I started to fall asleep in front of the computer. So I called the doctor’s office to get my results and then it all made sense why I felt so fucking crappy. A drop of ten point in 2 days is ridiculous to me. I called my family doc who has gone home with the flu. I asked her receptionist if she would call and put some pressure on the hematologist. The receptionist said I would probably have to come and see here – which means sitting in her office for 2 hours for basically the same result. She has all the blood work I have dutifully gotten 3 times a week for the past 2 weeks. So I called back to get the answer and found out that she has gone home sick with the flu and can barely talk.
I have been a compliant patient. I do everything they ask of me even if I have done it before and it has been a problem. I will try it again just to keep them all happy. Now I would like some results. They can give me a couple of units of blood and I will feel better. I don’t understand why this is such an issue.
I have now struggled with colitis for 5 years. I am done. I want them to take the thing out. I don’t care about a bag. I want an end to chronic pain and anxiety about chronic pain and where the next fucking bathroom is. I am done.
Today I was not the giver but rather the receiver. My co-worker drove me home. It takes 45 minutes and given that we both live in the same neck of the woods, she had just come from there. L took me to get blood work done as I don’t think I should be driving when my hemoglobin is so low that my eyes won’t focus. For the short time I was at work, I told someone that he looked really nice today and that I could see how hard he was working.
Pancytopenia is the official diagnosis of why I ended up in the hospital for a week. The reason I developed it is because I was taking imuran for my colitis. Imuran depresses the bone marrow. My dose was doubled 2 months ago to help cope with a colitis flare that was brewing. I am not sure if it was completely the imuran that caused the problem or if the H1N1 flu I had exacerbated the situation. I guess we will never know.
Dealing with pancytopenia has not been a walk in the park. When I was admitted into the hospital I was in critical condition. The scariest thing was my neutrophils (a form of white cells) were at .2. The normal range is 2.0-7.0. Given that these white cells are among the first to respond to any kind of infection it is a miracle that I did not come down with anything. My hemoglobin was at 81. Normal hemoglobin is between 120-150. While in the hospital, my hemoglobin plummeted to 68. At that point I was given a pint of blood. The experience of getting a blood transfusion was rather surreal. It took about 4 hours to run in because they were not sure that my IV would hold. Watching blood that was once in someone else flowing into me was a bit bizarre. If you can give blood, I urge you too. You never know when someone you know or love will need a blood transfusion.
Dealing with the low hemoglobin is quite difficult. I find it really difficult to walk any distance (think to the bathroom) without feeling like my limbs are moving through concrete. I am sleeping a minimum of 12 hours. My pallor is grey. I have very little motivation – especially to eat. However, I need to have good nutrition so that I can continue to make all the blood cells. I find that doing too many tasks in a row where I am moving around is impossible. Luckily, I have been able to sit and work this week. I even worked in the hospital.
The big question is what is going to happen with my colitis. The answer is unknown at this time. I have a new GI who has started me on a new protocol and we shall see what happens. Hopefully this break from my immune system will allow my colon to heal. I have to admit that I am simultaneously cautiously optimistic and deathly afraid.
So for now, I am not supposed to go out except to the lab when I have to wear a mask. I can’t really drive until my hemoglobin is up. But being in isolation at home is way better than the hospital!
Living with a chronic disease can be a struggle at the least. A disease like ulcerative colitis can be very problematic. Depending on the state of my colon I have varying degrees of symptoms. Quite often, I will be dealing with an issue and it is only after a long time or input from someone else do I realize that it is likely related to my colitis.
I saw my doctor a couple of weeks ago to get some refills. At that time she ordered a bunch of blood work. Today I found out that I have a low red blood cell count and I am likely B12 deficient. Doh! Perhaps that is why I am fatigued? Maybe this is why my legs go to rubber when I walk? Knowing why I am having a symptom or not feeling quite right sometimes makes it a little easier to take.
I have a chronic disease – ulcerative colitis. Due to my health issues I come into contact with the medical system quite frequently. I am one of the lucky ones in that I have a GP who manages my care very well. I know that I am one of the lucky ones.
I also come into contact with a lot of specialists. I have seen a dermatologist, an endocrinologist, an allergy specialist and a couple of gastroenterologists. I saw one who was an unmitigated disaster and a second one who was awesome. My second gastro doc was Dr. Hanna Binder who was killed, tragically, in a head on collision over the summer. She was an amazing woman who cared deeply about her patients. The nurses in the hospital, where I first saw her, raved about her.
I have now been referred to a new gastro doc – Dr. Atkinson. I have an appointment in about 2 weeks. Yesterday his office called and advised me that he was now seeing patients in Maple Ridge as well as New West. The secretary remembered that I lived in MR and called me to see if I wanted to see him there instead. My appointment ended up being moved up a week and at a much more convenient location for me. I was very impressed by this level of service, particularly from a specialists office. I have heard good things about this doctor so I am looking forward to seeing him. I hope he has some answers for me. I really hope I do not have to another colonoscopy!! The test itself is not so bad it is the prep!
For all the complaints about our health care system, I have to say that for it has worked very well. I may be an anomaly in that I do have a chronic disease. However, I have never waited more than a couple of months to see a specialist. In an emergency, it has been very quick. I compare this to my mother’s and sister’s experience in Calgary where 8-12 hour ER wait times are the norm. Seeing a specialist is very difficult. After my mother’s emergency surgery, which she had in BC, she was very grateful that she was in BC when she needed urgent medical care. My mother rarely has anything good to say about BC. Her comments indicate the severity of the situation in Alberta.
Anyone who knows me well will know that I battle with anxiety. I always have. I had trauma in my early years and then a chaotic childhood. Apparently this contributes a great deal to anxiety disorders. Over the years, I did much counselling and much healing but it was never enough to eradicate the anxiety and hyper-vigilance in my life. I have always been incredibily observant and I rarely ‘miss a beat.’ In fact, it is quite annoying to lots of people. I meticulously plan everything out and I rarely deviate from routines. I have knots in my shoulders and neck and I have even developed tendonitis as a result. I have always been able to manage my stress and anxiety with a small supply of ativan – not anymore.
Since my really bad bout with colitis, I have not been the same. My anxiety has escalated to the point where I am having muscle spasms, knots in my shoulders that can’t be removed and my jaw has been so sore because I keep it tensed. And then there is the fatigue – it has been so hard to work everyday with this level of stress and anxiety. Apparently chronic and serious illness also contributes to the development of an anxiety disorder.
Finally I went to my doctor a couple of weeks ago and she diagnosed a Generalized Anxiety Disorder. She started me on medication. One medication for a short time to get me through until the other one kicks in. I am now on 3 meds for anxiety. The good news is I am steadily feeling better. They symptoms of stress and anxiety are slowly melting away and I have actually ‘missed a few beats.’ What has really surprised me is the actual physical manifestations of mental illness.
Now, some of you may wonder why I would blog about this. I believe there is no shame in mental illness. I will blog openly about it as I have about my colitis. The more of us who come out and say we have these illnesses the less power there is in the stigma. I really don’t care who knows and I will talk openly about it to whoever wants to hear. Maybe someone else will get treatment as a result.
Well, it is here. I hope this year is a good one. While I don’t believe in resolutions I have decided to make the following ones based on yesterday’s post. I think I can manage them:
1. I will eat more carrots.
2. I will not eat nuts and popcorn.
3. I will cuddle the pug more and enjoy all of the uniqueness of our furry family.
4. I will continue to identify areas where I can improve and do so to the best of my ability.
Happy New Year Everyone! I hope it is a great one.
I am lucky to have time off between Christmas and New Years. I am not actually back to work until January 5. I have really enjoyed my time off and here is a rundown of what I have been doing and things I am grateful for:
1. Carrots – I have re-discovered carrots. For years we have been buying those little pre-formed carrots thinking they were baby carrots. I have now been disabused of this notion. We were at a friend’s place for dinner for a couple of months ago and there were carrots in the meal. They were the best carrots I have ever tasted. They were not mealy and watery. Instead they were soft and had an incredible flavour. I thought it was a one-off. Then we had carrots with a roast here about 6 weeks ago. I did not make it. And there were carrots…glorious, soft, rich carrots. I had seconds but only carrots. I made a roast last night and bought carrots and they were fantastic. I thought I did not like carrots – I was wrong. There will be many more carrots in 2009!
2. Nuts – I ate about 6 Ferrero Rochers with the hazelnuts in the middle. I loved them. Sadly, my colon did not. I am generally feeling very good these days. Many of the colitis symptoms are gone. However, colitis is still there and my colon has not healed. Six hazel nuts are enough to send me into a flare, which is not as bad as it has been, is still damned painful. The other thing that happens is that my anxiety about being sick gets triggered. My doctor says this is normal. I was really very, very sick just a year ago and I should not be surprised that I would react this way.
3. Comfort movies – with nothing to watch on the PVR I have resorted to watching comfort movies. Thus far I have watched The Hours, Meet the Fockers and Miss Congeniality. I love Sandra Bullock! I have also watched the entire second season of Big Love and half of season 1 of Millennium. I used to love that show!
4. I find crocheting very relaxing. I have not crocheted for years. My mother cajoled me into picking up my hook again and I am so glad she did! It gives me something to do and I can make some pretty awesome pieces! Now, if I can just convince Piper that she does not need to cover me and all my crochet cotton in pug hair life would be great!
5. I am appreciating my partner very much these days. We have had a major incident but we seem to be working through it and I think we will get past it and come out stronger the other side. This one will take a lot of work and a willingness to assume good intentions and forgiveness will also figure prominently. It seems to me that many people throw relationships away when there are difficulties – that is not our style. We work and work hard. We have been together 10 years and we are in it for the long haul.
6. New appliances – We decided to buy new appliances this year instead of Christmas gifts. I will never forgo exchanging gifts with my partner again. All of the fun was gone from Christmas. However, the new appliances ROCK! I never thought appliances could enhance your life but oh my! The new fridge has the freezer on the bottom. I thought I would hate this but it is great. Most of the stuff you use every day is now at eye level and you can find things without being bent over for a long time – this is very important when dealing with chronic pain. The freezer on the bottom has lovely roll out shelves for stuff and a big, deep basket. It is amazing. The new stove has a glass top which I love! It heats up quickly. It is a bit of a pain to keep clean (and seems to be bringing out Deb’s OCD) but it is very nice to cook on. It has the little area called the ‘warming zone’ where you can just keep stuff warm. The oven is self-cleaning. We opted not to get convection as we were not convinced we would use it and we have convection on our toaster oven. The new dishwasher is much larger inside and it has fold down racks and special baskets for knives and large utensils.
7. Old Friends – 2008 has been a year of seeing people I have known for more than 20 years. My friend Lydia and her daughter from Toronto came out to visit when I was really sick. My friend Lynn has moved in while she is looking for work and finding a place to buy here after moving from Ontario. I am also in touch with my best friend, Joe, from Calgary on a regular basis. Old friends are great; they know where you have been and see where you are now. I also don’t have a really good memory for things that happened in the past so my old friends remind me of things I have forgotten.
8. Cauliflower and cheese sauce – I think I make the best cheese sauce ever! We got a new steamer basket with our new pots and we had steamed cauliflower with cheese sauce for Christmas dinner. I have since had an entire meal of just cauliflower and cheese sauce!
9. The dogs – Our dogs are great. There is nothing quite like getting a snuggle with the pug for a long time while watching TV. I kiss her head and rub her ears and she moans and groans and snuggles in a little closer. It is very healing. The human race does not deserve the devotion dogs give to us. Then of course there is the funny stuff. We are often treated to the daily oral sex show where Piper will lay, in the middle of the floor, on her back and wait for some other dog to ‘service’ her. She does not wait long! It is hysterical. We lost our beloved Mabel in 2008 which really sucked but seeing as she came here to die in Feb of 2007 we were lucky to have her as long as we did. Our other seniors are doing well and Molly will be 20 tomorrow – which is very old for any dog and she is showing no signs of slowing down.
10. I am so grateful for my new job! It is exactly where I want to be – an Executive Director of a small not for profit. I am learning so much about leadership and creating a positive and respectful work environment. It is challenging, I am learning new skills and building on existing ones. It is meaningful work which is so important for me. Best of all it is flexible – it allows me the flexibility I need to look after my health.
All things considered 2008 has not been as bad a year as I had initially thought. It started off horrifically for me with a 2-week hospitalization for colitis and several months to recover. I was laid off from my former employer after my job description was re-jigged to such a point that I could not possibly do it. In hindsight, it was a very good thing as it gave me another couple of months to recover and I did land on my feet with a job I wanted and more money.
I don’t believe in making resolutions at the beginning of the new year. Instead I try to make small adjustments throughout the year when I see that something needs changing. So far, I am planning to reduce my dependence on Starbucks lattes. I have purchased a small coffee pot for work and good coffee. I like my coffee very strong so it is not fair for me to commandeer the work coffee pot. I am sure I will get the odd latte as well.
I hope 2009 is a great year!
Well it has been a busy time. I am off work until January 5 and I am so grateful. I needed a break. I was stupid and ate nuts over the holidays and I am now paying…colitis and nuts are a bad combination.
In other news – all of the dogs are doing ok. We think Tucker may have a bladder infection so he is off to the vet tomorrow. They all enjoyed their turkey very much. We got a hormone and antibiotic free turkey from Hopcott’s and it was fabulous! The rest of the dinner was to die for as well. We had cauliflower and cheese sauce, potatoes, and all sorts of other veggies that I ignored.
I am getting a little sick of the pope. Who is he to judge trans and homosexual people when he wears a dress and has other men kiss his hand? He is so completely outdated and the catholic church will lose support because of this kind of bigotry. We need to move towards a society that celebrates diversity rather than one that puts of with condemnations of minority groups.
The weather has also been a little frightful. I cannot remember ever seeing this much snow on the wet coast. We went out on Saturday and there were mountains of snow piled up in the parking lots. I know that for other areas of Canada this is normal but for here it is freaky!
Oh and the freaking neighbour’s dog is making me mental. They leave him outside for 12-14 hours at a time and he barks non-stop at our dogs when they go out. Ours are pretty good they don’t bark back as they know they just get brought in. I do not understand how the hell they can stand to listen to their dog barking his foolish head off for a whole day? What is wrong with people? It is so unfair to our dogs as they can’t be outside for any length of time because he won’t stop barking. The last thing we need is for other neighbours to think it is one of our dogs doing all the barking.