Energy

I am an introvert by nature. I find being in large groups of people to be very draining. I tend to avoid social occasions and parties. Once I am at a social event I am usually fine, however you will see me sitting by myself out of choice. I also like to have social events at my house that way I don’t have to go anywhere. If I did not have a job, I think I could quite happily never leave the house. However, I am quite social on the internet. I am plugged into and addicted to facebook. I used twitter for a while but it really did not do much for me. I prefer the interactivity of facebook.

I have a number of friends who are quite extroverted and they really don’t understand why I don’t want to go out or be social. I think it is hard for them to understand that while they thrive on being in these kinds of situations and actually gain energy from them it is the opposite for me. After a large gathering of any kind, I need a couple of hours quiet time in order to recover.

When I am sick this is exaggerated. I saw very fewnpeople over Christmas and that was fine with me. I simply needed the time to relax, regroup and recharge. So, to all of my extrovert friends, be patient, I am sure I will be back to my somewhat more normal self soon. The incident in November is still plaguing me with low hemoglobin counts and I just don’t have the energy.

Published in: on January 2, 2010 at 9:29 pm  Comments (2)  

2009 in Review

Here is my 2009 review post. I took this meme from Facebook. Seeing as all my blogs end up being posted in facebook, I thought I would do it here.

1. What did you do in 2009 that you’d never done before?

Had 2 blood transfusions. I also excited a lot of resident doctors because of the complexity of my medical issues.

2. Did you keep your new year’s resolutions, and will you make more for next year?

I don’t make resolutions. I think they are mostly useless. I make small changes all year-long instead.

3. Did anyone close to you give birth?

No, not close to me.

4. Did anyone close to you die?

Yes, we lost Mackenzie and Tucker in 2009.

5. What countries did you visit?

Canada

6. What would you like to have in 2010 that you lacked in 2009?

I want some health. I want some stamina. I want some hemoglobin. I would like to not live my life in chronic pain. Pain that even good drugs does not work on.

7. What date(s) from 2009 will remain etched upon your memory, and why?

Mackenzie passing away.

8. What was your greatest achievement for the year?

Work has been good this year.

9. What was your biggest failure?

Recognizing that I was seriously ill, again.

10. Did you suffer illness or injury?

Yes. I ended up hospitalized with pancytopenia. My immune system crashed from imuran, a drug I was taking for my colitis.

11. What was the best thing you bought?

My new iMacs!

12. Whose behaviour merited celebration?

Deb has worked really hard this year and grown a great deal. I am very proud of her.

13. Whose behaviour made you appalled and depressed?

Rather not say.

14. Where did most of your money go?

Who knows. Gadgets?

15. What did you get really, really, really excited about?

I was really excited about my Apple TV – which was a complete surprise. I got excited about a little trip we took to Harrison Hot Springs to get out of the heat! I needed air conditioning!

16. What song will always remind you of 2009?

I think it would have to be the Glee songs. I love those songs. I would also have to add the New Pornographers and Jets Overhead.

17. Compared to this time last year, are you:
I. happier or sadder? about the same
II. thinner or fatter? thinner
III. richer or poorer? about the same

18. What do you wish you’d done more of?

Listen to music and play computer games and relax.

19. What do you wish you’d done less of?

Sleep – I hate being chronically ill and having to sleep 10-12 hours a night. It means I have very little time for me.

20. How will you be spending Christmas?

At home with my sweetie.

21. How will you be spending New Year?

At home with my sweetie.

22. Did you fall in love in 2009?

Yes – with another dog, Zoe and even deeper in love with Deb.

23. How many one-night stands?

When I first read that I thought it asked how many night stands. That should be answer enough.

24. What was your favourite TV program?

But I have so many!!! Survivor, Greys, The Good Wife, Dexter

25. Do you hate anyone now that you didn’t hate this time last year?

I try not to waste my time hating any one.

26. What was the best book you read?

Such a Pretty Fat, 28 stories of AIDS in Africa.

27. What was your greatest musical discovery?

The new Pornographers

28. What did you want and get?

Everything

30. What was your favourite film of this year?

I don’t know. I have not watched a lot of movies lately because they seem to be mostly crap. Although My Sister’s Keeper was pretty good.

31. What did you do on your birthday, and how old were you?

44 and I can’t remember. Oh, wait, I think we went to the White Spot.

32. What one thing would have made your year immeasurably more satisfying?

Being healthy.

33. How would you describe your personal fashion concept in 2009?

Dressed by Deb

34. What kept you sane?

benzos? Trazodone is a wonder drug.

35. Which celebrity/public figure did you fancy the most?

I like Julianna Margules

36. What political issue stirred you the most?

So many. I have no idea where to start.

37. Who did you miss?

Joe

38. Who was the best new person that you met?

Yvette

39. Tell us a valuable life lesson you learned in 2009:

If you can’t stand up you may want to consider going to the hospital.

40. Quote a song lyric that sums up your year:

Whatta ya want from me? Adam Lambert

41. This is my add-on question: What are you looking forward to the most in 2010:

I am excited that Deb is going to be blogging again at Fat People are Hard to Kidnap. If you have never read Deb’s blog I highly suggest you read some of the previous posts. She has a very unique way of saying things and she is far more talented at this blogging thing than I am. I have a new GPS, iPhone compatible stereo going into my car on Sunday – no more getting lost. I have new GI doc and I hoping to get me some colitis remission. I am looking forward to another challenging (in a good way) year at work – I hope to learn lots and mentor more. I am excited about another year with our great jobs – there is nothing like snuggling with the poopers at night and first thing in the morning. I am also looking forward to converting as many people as possible to Google products. I am very good at this and I should get a reward from Google. I love Google Wave, Gmail, Google reader….I think I have Stockholm Syndrome. Finally, I am looking forward to doing some work and gaining some insight.

Published in: on January 1, 2010 at 8:21 pm  Comments (2)  
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Acts of Kindness

Since I started this round of NaBloPoMo with the theme of mitzvah I have not been in much of a position to perform acts of kindness, planned or otherwise. Instead, it would seem, I have been the recipient. I am going to attempt to list below some of the kindnesses people have shown me. I know there is no way that I can remember all of them. Unfortunately, one of the side effects of low hemoglobin is poor memory. So if I forget you, please don’t take it personally. Instead feel free to humiliate me in the comments. So here goes:

  • First off, the emergency doctor who called to tell us to go to the hospital. I don’t know who he was so I can’t thank him. He did have a sense of humour though which was great.
  • My co-workers who visited me in the hospital and who brought me flowers, and stuffed animals.
  • My friends who visited me in the hospital and brought me flowers and stuffed animals. A special shout out to Meaghan and Mandy who brought me special stuffed dogs that I can adopt on the net.
  • Special thanks to those I live with who have babysat me and made sure I had everything I needed. Especially to Angelina who has been pretty much waiting on me hand and foot because I have been so tired.
  • My co-workers – who have been so generous with their concern and help at the office. Making sure that I didn’t do anything physical, bringing me things that I needed and reminding me not to over do it. Trust me, I am listening!!!
  • Kudos to Piper and Zoe who have been my faithful companions in my chair as I rested. I am sure they are responsible for my neutraphils doubling the night I was released out of the hospital. Other dogs (who shall remain nameless)* kept trying to trip me and get in my way…but, oh ya, this is about acts of kindness. Maybe they were just trying to break my potential fall…ya, that’s it!
  • My friend Joe who kindly asked to be put on the ‘list’ of people who are contacted when I get sick.
  • All of my friends who I have contact with through facebook. Reading your comments, well-wishes and notes of support really helped me more than you will ever know
  • Deb – what is there to say? She has done so much for me not only since I have been sick but every single day. It is the small acts of kindness she does every day like turning on the electric blanket on my side of the bed. She makes sure I have everything I need every day. She drove me to numerous blood tests, she sat with me through IV placements, blood transfusions. She brought me pumpkin soup from White Spot and chicken taco salad from the restaurant across the street from the hospital. But most of all she was with me. She looked after me, she helped me shower and she watched me sleep. I am blessed

If I missed anyone I am sorry.

*Tucker, Kiefer

Edited to add:

  • Jean, who brought me a fruit basket in typical English form. I am sorry I did not remember!!!
Published in: on December 13, 2009 at 8:42 pm  Comments (2)  
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Flu Shots

Well, I finally gave in and got the flu shots. Basically, my doctor did not really give me a choice. If I were to get sick again with the flu it could wipe out my immune system again. Having gone through that once it is not something I am eager to repeat. So I had the seasonal and H1N1 shots today. I am a little tired but that could be the low hemoglobin. In good news, my appetite has returned for the moment.

In bad news, I have developed cellulitis in my pyoderma gangrenosum scar from late 2007. It is quite painful, and pretty nasty looking. It is also a result of my immune system crash. I am on keflex orally and I am praying it goes away or I will end up on IV antibiotics. I have made myself clear though that they will have to put in some kind of a line because I really have no veins left. Plus I will likely end up on some kind of iron infusions to treat my low hemoglobin.  The next treatment for colitis is also deliverd via IV. So, it looks like a PICC or port is in my future.

My hemoglobin held between Monday and Wednesday which is a great sign. I felt well most of yesterday and today. I can’t imagine how well I might feel when my hemoglobin goes from 87 to within the normal range (120-150).

I see the hematologist next week. It should prove interesting!

Published in: on December 11, 2009 at 8:37 pm  Comments (1)  

Pin Cushion

Ok, I officially feel like a pin cushion. I had daily blood tests when I was in the hospital. Since I have been out I have had 3 per week. The problem is that I only have 1 vein that is accessible. So, every single one of the those tests has come out of that one vein.

On Friday, when I had the blood transfusion, they could not get another vein so I told the nurse about the ‘good vein.’ It worked for the transfusion just fine. However, it did get bruised in the process. I had some concern that it might not work for the blood test today. The lab tech tried in the usual place and it didn’t work. I suggested she go above the usual spot and it worked.

I really hope the end to this is near. I fear though that it is not. If I need a different treatment for colitis, it is delivered via IV. If the low hemoglobin persists I may need iron delivered by infusion and therefore IV as well. If any of these are the case, I am going to have to have a catheter put in my chest or a picc line in my arm. Hopefully, it won’t come to this but there are no guarantees.

Published in: on December 7, 2009 at 9:16 pm  Leave a Comment  

More thoughts about Mitzvah

I have been thinking about all of the little things I do in a day that may help to make other people’s lives better. I have been processing this NaBloPoMo theme for a couple of days now and I have come to the conclusion that it just does not sit right for me. I am all for doing nice things for other people. For me, the motivation behind the act is more important than the act itself. It was not good enough for me to do something nice and run to my blog and put it there. By their very nature, acts of kindness are best left undiscussed.  Once they become fodder for a blog posting they seem to lose their value. One of the values I live my life by is kindness. I try to notice when people need a hand and if there is something I can do  I will do it. Sometimes though our kindness is hemmed in because of personal or professional boundaries. These are some of the hardest waters to navigate – you want to do something for nice for someone but at the same time you know that to do so would breach boundaries and change a relationship forever.

Another major part of kindness/mitzvah lies in the not taking credit for it. If I do something and then go on and on about what a great person I am because I did “X” for someone what does that really mean? Did I do it because I wanted to do it or did I do it so that I could brag about it. Acts of kindness are best kept small and quiet. It need only be known between the giver and the receiver.

I also believe that those who receive something kind need only pass on something equally kind to someone else in the future. I remember when I was about 12 years old and I was being tormented by a group of older kids everyday. They would chase me home and beat me up if they got to me. Then one day a neighbour came out and told them to go away. She told me I only needed to make it as far as her house every day and that she would let me come in and hang out until they got bored and went away. As an overweight child I did not run as well as the others, so knowing that this neighbour was looking out for me made all the difference in school that year. I used to thank her all the time but she told me to stop because one day I would be in a position to help someone out and she hoped that I would do it. I assured her I would. In fact, this has been a life lesson I have taken with me and shared with others.

I think I have decided to turn the NaBloPoMo concept of mitzvah on its head. I am not going to talk about what I have done for others, I am going to be thankful for what others have done for me. I have never been one to follow the beat of another drummer. I have my own beat and I like to lead.

I didn’t blog yesterday as I was getting a blood transfusion. I did not have time before and I was completely exhausted when we got home. I had the transfusion because my hemoglobin is way low – 81. Hopefully the transfusion will give me a bump up 91. My hematologist also did a bunch of other tests on my blood and iron levels. I am hoping I am going to be able to get iron infusions rather than having to take it orally. Taking iron orally is wreaking havoc with my bowel and it is slow. Right now, I have a need for speed. All of my other counts are back up in normal range except for my hemoglobin. Ironically, the one that has not come back is the one that affects you the most in terms of energy level etc. Low white blood cells means you may get an infection easier (ok, I know, not so good). I just want to get back to work and back to my life.

Today, I am so thankful to the person who gave blood so that I could have some of it in my veins. The idea of a blood transfusions always freaked me out. I was not sure how I was going to feel with another person’s blood cells in my body. I have to say, I don’t feel any different. I hope to have a bump in energy but I have not felt that yet today. I am going to take it so easy over the next couple of days. I intend to watch tv and sleep. Hopefully after 2 days of complete and utter relaxation my body will feel better.

The bag of blood

Me geting the blood

One thing I have noticed through my 2 transfusions is that I am very tired and cold during transfusions. I am not sure why this is happens. I may be tired because of the 2 ativan I needed to relax enough for the IV to go in. I am ridiculously difficult to put an IV into. The coldness, I am not sure about but I ended up buried under 3 blankets trying to get warm.  I was tired when I got home I kept falling asleep while trying to eat dinner. I am hoping with some more sleep and relaxation I will get a good hit from this transfusion. Oh and don’t forget the iron!

Published in: on December 5, 2009 at 11:55 am  Comments (7)  
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Frustration

What I need more of - immediately!

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.

Mitzvah Update:

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.

Published in: on December 2, 2009 at 5:42 pm  Comments (2)  
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Things are looking up…way up!

I had blood work done Wednesday afternoon, the day after I left the hospital. I could not believe how much higher my counts were. The two I have been keeping track of are the neutrophils and hemoglobin. On Tuesday afternoon when the did blood work at the hospital my neutrophil count as .7 and my hemoglobin was 81. One day later my neutrophils were 1.6 and my hemoglobin was 91! What a difference a day makes. I think it was because I was home and I could cuddle with my sweetie and my poopers. I had more blood work today and I cannot wait for the results!

Published in: on November 27, 2009 at 9:42 pm  Comments (1)  

Pancytopenia

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!

Published in: on November 26, 2009 at 6:00 pm  Comments (3)  

I am home…

It was a bit of a saga this morning. When they did my morning blood test my neutraphils had gone to .5 which was most frustrating. I had so hoped to go home today, I was missing being with and I was desperately missing the dogs. So when I got the news that they had gone I just about lost it. They gave me the injection that is supposed to encourage their growth. We decided to do another test at 2 and they had gone back up to .7.

Then the issue became getting a hold of all doctors involved to let me go. The resident had to talk to her senior, then the attending for their unit, the hematologist and the gastroenterologist all had to agree. It seriously looked like it would take until tomorrow but she was able to pull it off and I am very grateful.

I have to say that my experience in the Royal Columbian was quite good. I didn’t get to see much of the place as I was not allowed to leave my room, ever! As a lesbian couple we always expect some kind of homophobia when dealing with large institutions. The staff there were so good that I didn’t realize until we were coming home that there had been no homophobia. All the staff who worked with us knew because Deb and I are too big to fit into a closet.*

I am still pretty week. My hemoglobin is about 81 which makes me fall asleep when I am comfortable. Walking from one end of the house to the other is trying. My limbs feel like lead but this too shall pass. Last week I was noticing I having trouble walking from the car to the office and thought I better get back on my treadmill. I am holding off on that at least until I hit the low-end of normal for hemoglobin.

I am off to go and cuddle with my dogs and my sweetie if the dogs will let us.

 

*I think I stole that line from Deb.

Published in: on November 24, 2009 at 10:54 pm  Comments (3)