Monday morning I had my blood test to see what my INR (blood clotting time was). Ideally while on Warfarin it should be between 2.0 and 3.0. My number was 2.9.
Today I went in again to have my blood level checked. They couldn’t get blood from the old faithful vein in my right arm. They found what they thought would be a good vein in my left arm. Because the order was STAT they were supposed to get 2 vials of blood. They got the needle into my tiny and very twisty vein. The first vial of blood comes out and as they start to collect a second my vein blows.
I am not surprised. Back in the days when I had so many blood tests, I began having this issue with using my veins too much. They bandaged my arm and told me not to lift anything for at least an hour (not an easy task with a three-year-old waiting for me at home). Thank goodness my husband was there. I now have a very ugly hematoma on my left arm that is ugly and very tender.
This afternoon when I phoned to get my INR level I was told that it was now at 5.9 (nearly double the acceptable upper level). This may have to do with my dose being upped on Saturday to 10 mg and then dropped back down to 5 on Sunday. It can take four days for changes to show up and today would have been four days since Saturday’s dose. I am to stay off the Warfarin for two days and retest on Friday (assuming I have any way of giving them the blood). I am being extremely careful around anything sharp and have removed my rugs and anything that may cause me to take a tumble in the meantime.
I meet with my doctor tomorrow. We will be discussing many things. One is that I want to be referred to a hematologist who can possibly better manage my blood levels. I am also going to ask for a self INR test machine. Where I only have to poke my blood with a lancet and put it on a test strip similar to what diabetics use. The result will be instantaneous. I call a number, give my ID and the level and my doctor is notified immediately of the results. I can’t continue to poke my veins 2 or 3 times a week. They are not going to hold out. I believe it is covered under medicare or my insurance company as a loaner.
I am spending a lot of time the rest of this week being very sedentary and reading. I will pop in to the office for short spurts periodically to check on my email, etc. Needless to say this is too much of Been There, Done That for me right now.
I hope you all are doing well.
Today is the start of National Invisible Chronic Illness Awareness Week which runs through September 14th.
How many of you who are ill with environmental illness, chronic fatigue, fibromyalgia, etc. have been told that you don’t look sick? I have been told that I look good when I feel horrible. On one hand I am glad that I am not looking as horrible as I may feel but it is hard to explain to others when you may not look as bad as you feel. On August 3, 2012, I posted on this site “Me in the Beginning” When you look at my picture taken in 2002, it is easy to see how sick I was. I don’t even think I realized how sick I looked until later when I saw my picture. I knew I felt bad and something horrible was wrong but looking at myself in the mirror daily the changes were gradual. I didn’t suddenly wake up with dark circles, a haunting look, skinnier than I had ever been and with yellowing skin tone.
I want to raise awareness that environmental illness, chronic fatigue, fibromyalgia and other chronic illness may not necessarily affect a person’s appearance. It is truly and invisible and silent terror that many go through on a daily basis. I hope that a day will come when someone says they have some unusual or unexplained illness, they will be treated with respect and their complaints taken seriously.
Toni Bernhard wrote a wonderful article entitled The challenges of Living with Invisible Pain or Illness. She is also the author of an amazing book, “How to Be Sick”. A dear friend of mine published her book, Intentional Healing: One Woman’s Path to Higher Consciousness and Healing from Environmental and other Chronic Illnesses, a year before I completed Allergic to Life: My Battle for Survival, Courage, and Hope. I hope these writings will allow you to know that you are not alone in your battle with invisible illness.
Please take a moment to visit the Invisible Illness website and read the stories that others have shared. Had I been more aware and on top of things this year, I would have included a blog post on this site as I have done in the past.
Posted in Allergic to Life: My Battle for Survival, Allergies and Sensitivities, Chronic Illness and Treatment, Courage and Hope, Depression, Environmental Illness
Tagged allergic to life, chronic illness, depression, environmental illness, How to be Sick, Invisible Illness Week, multiple chemical sensitivity, Toni Bernhard
I originally posted this on March 5, 2013. This is a topic that comes up all to often among those of us with chemical sensitivity or chronic illness. I decided it was time to share it once more on my Catch Up Mondays.
Today I was honored to be listed among some other very good bloggers on Ichigo Ichie in her post on Human Canaries and Friendship. We all know that we are the canaries, the guinea pigs for finding what works/doesn’t work on our environmental illness and chemical sensitivities or other chronic invisible illnesses. We also know what it is like to lose friendships during our struggles to make our world safe and in search of improving our health. We also know how empowering it is to make new friendships with those who understand and will gladly lend a sympathic ear. I am now following this blog too.
Dr. Rea once said that we are just the tip of the iceberg. One day, we will be the ones that are empowered, the ones with the knowledge, and everyone else will be beating down our doors for information and sympathy.
Posted in Allergic to Life: My Battle for Survival, Allergies and Sensitivities, Catch-Up Mondays, Chronic Illness and Treatment, Courage and Hope, Depression, Environmental Illness, Multiple Chemical Sensitivity
Tagged allergic to life, Catch Up Mondays, chronic illness, Courage and Hope, depression, Human Canaries & Friendship, loss of friendships when illness strikes, multiple chemical sensitivity
I remember back in the beginning when I was sick and still working. One of my co-workers sent me this video clip. I loved it and had saved it on my computer. Somewhere along the line it got deleted. I was thinking of it today and decided to search youtube for it. Whenever I was having a really bad day, I would sit at my desk and pull up the video and watch it.
I hope you enjoy it. We are all SURVIVORS. Our circumstances may be different but we have all survived something in our lives.
I suffer from a chronic and invisible illness as do many of my readers. We all know how difficult it is to navigate through life with an illness that can’t be seen. It is difficult to convince others and often times those in the medical field that our symptoms are real; they are not something we have conjured up in our heads. As an adult dealing with chronic and invisible illness, I have learned to find my voice. I have learned to stand up for myself. It didn’t happen over night and it hasn’t always been easy. I cannot imagine what this is like for young people who are still navigating adulthood and may not easily find their voice and be able to deal with chronic illness.
Toni Bernhard, author of How To Be Sick and How to Wake Up, writes for Psychology Today. A few months ago, she posted a wonderful article entitled The Extra Burdens Faced by Young People with Chronic Illness. Toni’s articles are always very insightful. I have read How To be Sick and plan on reading How to Wake Up very soon.
Recently I spent a lot of time at the hospital with my dad. My mother and sister were there with me. One morning while we were on our way outside for some fresh air my sister decided to walk into the gift shop. I walked in and immediately spied this little pink notepad and had to take it home with me. The front of it was covered with three quotes:
A Pencil And A Dream Can Take You Anywhere
Dreams Are Illustrations From The Book Your Soul Is Writing About You
Fill Your Paper With the Breathings Of Your Heart
Fill Your Paper With The Breathings Of Your Heart
This saying said something to me straight away. I fill my journal with the “breathings of my heart” especially when dealing with a difficult time in my life. My book, Allergic to Life: My Battle for Survival, Courage, and Hope, is filled with the “breathings of my heart”. I included many excerpts from my journal written during the most difficult times of my journey through mold induced illness and chemical sensitivity.
I found myself crying the other night. I was having an emotional meltdown at the passing of my father and could not sleep. My journal was once again there to comfort me. It allowed me to say all the things I could not say out loud. It allowed me to talk to my father and to write a poem about one of his favorite belongings, his lucky horseshoe (I am not yet emotionally ready to share the poem). I am still finding it difficult to resume my writing on my blogs or other projects that I am in the process of starting. Until I can write, I have my journal.
Which quote resonates the most with you and why?
In March I read a blog post that my friend Karen Ingalls had on her blog outshineovariancancer. The title of the blog post was For No Fear: You Must Know Fear. The title intrigued me and I would have loved to have found this back in the days when I was so fearful; fearful of living another day, fearful that I wouldn’t live another day, fearful of the next reaction, etc.
Thank you Karen for sharing such a wonderful post with us.
Posted in Allergic to Life: My Battle for Survival, Allergies and Sensitivities, Chronic Illness and Treatment, Courage and Hope, Depression, Environmental Illness, Food Allergies, Mold, Mold Exposure, Multiple Chemical Sensitivity, Reactions, Sick Buildings, Spirit
Tagged fear, For No Fear: You Must Know Fear, Karen Ingalls, Outshine Ovarian Cancer