Dispatches from the Swamp – the ‘whew she is ok’ edition

  • We have begun the testing for Piper to see what is wrong with her breathing. We are operating under the assumption that she has too much tissue in her soft palate, which is blocking her airway. In preparation for her going under anesthetic tomorrow so they can get a good look at her throat we had blood work done yesterday. Today we found out that some of her liver enzymes were elevated. We did an additional test and the vet thinks that her liver was likely dealing with some toxin. Her liver is functioning fine. So tomorrow we should know the extent of her soft palate and throat issues.
  • It shocks me the depths some people will go. Christie Blatchford[1] wrote the most negative column yesterday about the media’s handling of Jack Layton’s death. However she didn’t just criticize the media, she denigrated the man himself. She even criticized his last letter to Canadians writing “Who seriously writes of himself, “All my life I have worked to make things better”?” I don’t know any other politician who could say that about himself. Is Blatchford that disillusioned that she needed to chastise a dead man’s view of his life? Jack Layton had a reputation to fight for underdog causes whether it was better treatment for people with HIV/AIDS or fighting for ordinary families on the campaign trail recently. I only hope Olivia Chow and Jack’s children Michael and Sarah do not read it. Blatchford should be ashamed of herself.
  • Speaking of Jack Layton, I encourage everyone I know, who supports the NDP, to donate monthly. Would you really miss $10 per month? I know I won’t.
  • I found a great new show on the Oprah network.[2] It is a documentary show called “Our America.’ The host is Lisa Ling and she is fabulous. I have seen two episodes so far one on sex offenders and the other was on internet brides.  I think show will do very well.
  • My ulcerative colitis has really been causing me a lot of pain lately. I have had several days where my pain levels have been through the roof. I fear I may have to lay off the grilled veggies and Holy Crap cereal for a bit.

[1] I am not inserting a ling here because I do not want to send traffic her way.

[2] I swore I wouldn’t watch it but we had it and I am weak.

My Weekly Blood Tests

I went to the lab and it was seriously backed up. When my turn finally came, the tech who tried to take my blood missed and moved the needle around for at least a minute before I finally said please stop that really hurts. It is hard going for blood work on a weekly basis when you have bad veins. There are a few of the women there who know me and do a really good job for me. They know my particular needs:

  • Check the left arm. You will feel the vein and not see it.
  • Tie the tourniquet really tight, over my shirt.
  • Don’t use a green needle or you will blow the vein
  • I won’t touch cotton, I will have a tissue ready to press
  • I don’t want a band-aid as they eat my skin. I will sit and press and leave.

When the tech missed I suggested she grab the one who I know always finds my difficult vein. She did fine and I was out of there in 5 minutes once I saw her.

Going every week and with bad veins, I really have to walk a fine line. I can’t ever be difficult or whine – at least that is the expectation I have of myself. I find if I am relaxed and just let them do their thing with me giving them the information that I know works strikes a nice balance. Being someone with a chronic disease, you come into contact with the medical system a great deal. You come to understand what works for you and you must be able to state what you need in a calm, professional and well-mannered way. I have found that medical professionals appreciate patients who know what works for them; patients who are active participants in their own care.

I know that it is very hard to get an IV into my arm. I have learned though that if the nurse uses a hot, wet compress on the top of my left arm a bunch of veins will pop up that are great for IVs. I had noticed these veins when I was in the shower and I always wondered where they went. I tried this at my last colonoscopy appointment and it worked so well. Now, if the doctor had given me enough sedation at that appointment it would not have been such a horrific experience.

I think the whole point of this particular blog entry is to look at ways those of us with chronic diseases can be partners in our own care. My experience has always been that most doctors and other medical personnel (there are exceptions) like informed patients who are active in their own care. It is even better if you can tell them how to treat you in a better way.

Oh, and my hemoglobin is back down to 120. I am not happy by this development. It explains why I have been feeling more fatigued again. Break out the Palfer CF.

Weekend Crash and Burn

I usually don’t have to go in to work on a Monday. I have every other Monday off and I work at home on the alternate Mondays. Living with a chronic disease, that always has nasty surprises for me, I need to use my time off effectively. I love my job. I find it challenging and I have no intention quitting. A couple of times a year my doctor asks me why I continue to work. She says most of her patients with inflammatory bowel disease* do not work. So, my plan is to take it easy this weekend. I will stay home and hang out, watch tv and pet dogs.

*Ulcerative Colitis and Crohn’s Disease are the two most common types of inflammatory Bowel Disease (IBD).

A nice day!

Deb and I went out for breakfast to Ihop this morning. We love going to Ihop for breakfast except it was more like a late brunch. We then did a bunch of errands. We even braved Staples because I had to return something. It was surprising but wasn’t really as bad as it seemed. They had every till open and someone directing people to them as they became available. I went through twice and I was in and out in under 15 minutes.

It was great to spend some time together. It is something we need to do more often. We get caught up working and with medical issues and being tired all the time. Living with chronic disease takes its toll on relationships. I would imagine it would it would be much harder if it was only one person. At least we can completely understand the limitations the other faces. We look out for each other. We try to assist each other with the deficits our illnesses cause us. People who do not live with a disease really have a hard time understanding what we go through. We are so attuned to each other that I know when Deb is getting a migraine before she does. She can tell when I am in pain by how I breathe.

Even though it was pouring rain today it was still great to be out. Plus it was a pretty good day on the pain meter.

A blog note: I can’t believe I totally forgot to blog on Saturday night!!! Ugh!