I, and several other bloggers who suffer from multiple chemical sensitivity, talk about how hard difficult it is to navigate public places and deal with the multitude of fragrances both in the buildings themselves and on those in the buildings. Have you ever walked by and thought the person you just passed must have bathed in perfume? Since becoming ill I have thought that these people have masked to chemicals or have simply lost the ability to smell. Therefore, they keep putting on their fragrances until they can detect the fragrance.
I remember returning to my last workplace after becoming ill and being absent for many months. I had gone to gather my things because it was obvious that I would not be able to return to work. I walked in with my mask to gather up my belongings. Suddenly I realized that their were fragrances. The fragrances were everywhere I turned. They were overpowering even with my mask on. I quickly walked out. My fellow co-workers wanted to visit with me. I had to stand outside and keep them at a distance. I asked them if they had always worn perfume? They all replied that they had. Why hadn’t I noticed before? Why didn’t I notice the odor of the paint that was being applied to the door facings while I sat at my “new” desk with “new” carpeting still being laid down around me? My only answer is that my sinuses, because of so many infections and surgeries, just could no longer detect anything. I was sick everywhere I went but had no idea all these chemicals were adding to my body’s already weakened system and over all body burden.
It wasn’t until recently when I had a bad night and could not sleep that I turned on the television and heard a commercial. AHA! There was the answer. I had been “nose blind” due to all that my sinuses had gone through. This also explains why so many others not only where perfume or cologne, but bathe in it. They are “nose blind” until they get to a certain level of fragrances.
The commercial was for “Febreze”. The person was talking about their pets and the odors they caused. The person said she had become “nose blind” to all the pet odors. When friends came to visit it was like visiting a place with twice as many animals. The answer, of course, was to just spray the house with “Febreze”!
The chemical industry is bombarding us with more and more chemicals on a daily basis. I forget the number of new chemicals that are introduced each year; the number is staggering. Dr. Rea said once that we were just the tip of the iceburg so to speak when he talked about chemical sensitivities.
We need to stay vigilant and continue to speak out about the dangers of chemicals and the debilitating effect they have on us.
Karen Ingalls (@kareningalls1) recently celebrated a blog anniversary at Outshine Ovarian Cancer. I have been following along with Karen and her story for quite some time and have read her book Outshine: An Ovarian Cancer Memoir. Outshine is an inspiring book that not only chronicles her battle with ovarian cancer but shows a deep faith and spirit.
Karen had a giveaway to celebrate the anniversary of her blog. I was a lucky winner of this beautiful plaque that now graces a shelf in my office alongside a photo of myself in my early days of illness and a beautiful glass that belonged to my paternal grandfather (one of the few possessions of his that I am able to have in my home). The plaque reads: I can do all things through Christ who gives me strength…Phil 4:13 . Thank you Karen for such a lovely gift.
Since writing Outshine: An Ovarian Cancer Memoir, Karen has had a recurrence of cancer and gone through yet another round of treatment. Karen is a brave lady and I am happy to call her a friend despite never meeting in person.
I have had many new followers in the past week thanks to the I Am A Writer’s $300 Holiday Cash Giveaway that I am participating in. Following my blog is my entrance requirement to the giveaway. I would like to say “thank you” to all my new followers. I hope you will continue to follow along and learn more of my journey with mold-induced illness and multiple chemical sensitivities through my blog posts and my book.
Thank you also, to my loyal followers and especially to those who take the time to not only read my posts but comment and re-blog them.
I have talked many times about how I used to sew so many different things from clothes for my children and myself to shirts for my husband. I sewed Halloween costumes, made curtains, and stuffed animals and dolls.
After becoming ill, I began having issues with visual and sensory over-stimulation due to the mold exposure. I could not look at a pattern piece with its shape andthen place it on a patterned piece of fabric and decide how best to lay it out without having anxiety attacks that led to tears. I gave up sewing because I just could not manage it. What used to be a calming thing to do became a nightmare of gigantic proportion.
This doll (made nearly 20 years ago) was for a friend who wanted a Scottish doll. I took a Raggedy Andy pattern and began designing. I took the shirt that closed in the back and made it open in the front with color and buttons. I used the same pattern and designed the jacket first out of muslin and then out of tweed fabric. I bought red gingham fabric and fashioned the legs to give the appearance of socks. I practiced again on muslin to fashion a kilt that would fit the doll and then using the precious piece of his clan’s fabric made the kilt. The hat was fashioned out of felt and I used orange yarn to make his hair and beard. My father using his upholstery machine and know-how made the bag.
Back of Doll.
It wasn’t until my first granddaughter Sadie was born eight years ago that I attempted to sew again. I wanted to make her a dress. I was going to be a grandma that could make things for her. My first attempt was a simple pattern with bloomers.
Then I wanted to make her first birthday dress which was a huge undertaking. It was made of coordinating polka dots (blue with white and white with blue). It also had many details. I was determined that this grandma was going to figure out a way to sew again.
An American Girl Witch
This same granddaughter asked if I would make a Halloween costume for her American Girl Doll Sage last month. She wanted either a witch or pirate costume. Looking online for doll patterns that would work for American Girl Dolls, I found several. Much to my chagrin they were $17.99 on sale for about $8.99. Still too much for a doll pattern. Armed with my muslin I began trying to create a simple dress and cape. After several attempts, this was the end product. I presented it to my granddaughters (because sister needed one for her doll as well). She loved it. Of course she asked where the hat was and I told her that grandma just couldn’t figure it out. Had this been a request of me ten or eleven years ago, I would have just sat and worked at it until I had a hat.
While my sewing now resembles two different lifetimes, I am so thankful that I have recovered enough to be able to sew again.
And isn’t this the season for thanksgiving? I am so thankful for the things I have managed to get back into my life. I am thankful for my family and the friends who stood by me. I am thankful for my wonderful doctors. I am also thankful for those who I have met and the lessons I have learned because of this illness. I am thankful for all you who follow along with me on my journey and those who have purchased my book to learn more of my journey.
The Allergic to Life Giveaway is over and I am excited that there were 496 entrants in the Goodreads Giveaway. Goodreads selected the three winners and all books are on their way. One of the winners is a fellow Rave Reviews Book Club member, Kenneth Kerr. Congratulations Kenneth your book is on its way!
During my Giveaway, I promised that I would also give away three e-books. Using a generating tool, I entered the names of all the contestants who commented on my giveaway blog posts. I have sent an email to each winner with information on how to claim their prize. Congratulations to:
Because of the number of those commenting, I chose to have one more name selected. I would also like to congratulate: Princess and the Pea.
Well almost from head to toe. At least not on my face. The added benefit downside of taking Warfarin is that it truly thins the blood. I am getting bruises where I never thought I would get a bruise. I have bruises on my wrists, on the back of my arms, on my stomach and sides, and on the top of my feet.
I have these little bruises all over my body.
I woke up to find this bruise two days ago. It is on the inside of my leg.
I have no idea how I got this bruise on the top of my foot.
I met yesterday with my hematologist. She had a long conversation with the radiologist. They believe it is a chronic thrombosis most likely from when I was spending so much time sitting back in May and June. However, since they cannot rule out an acute thrombosis, I am on Warfarin until just before Christmas. I asked about the bruises and she just said that it was the downside of the Warfarin. Every time I turn around there is a new bruise that I am discovering.
In six months I will have an other ultrasound done on my leg and meet with the doctor so there is a record in case I have another issue of swelling. I am still dealing with swelling of my ankle and calf. I need to order a compression stocking to see if it will help. Has any one had experience with compression stockings? I have found one version (a trouser sock) that does not have latex in it. I still don’t know if I will be able to tolerate the trouser sock. I guess I will find out when I get it.
I am still dealing with my partial deep vein thrombosis. In my last post dated October 1st, Be Careful Around Sharp Objects, I talked about discovering that my INR (prothrombin clotting and international normal ratio) was at 5.9 and I was to stay off the Warfarin for 2 days and retest on Friday, October 3rd. I did the retest and my level was still at 5.9. My doctor had me to continue to stay off Warfarin through the weekend and retest on Monday. Monday my level was 4.3 (still too high). On Wednesday my level had gone down to 3.7 and my doctor’s MA phoned and said I was to start up again but at 4 mg.
As I have said many many times, you need to listen to your intuition. Your gut does not lie. After doing some research I learned that my antifungal medication could have an affect with the Warfarin causing my blood to be too thin. I could not stop the antifungal without risk of a recurring infection. I phoned my doctor’s office again and asked to speak with the doctor. I explained my sensitivities to medication and what I had learned about the antifungal medications. She agreed to have me take 2.5 (half of my 5 mg) tablet for a week and then retest. I had my blood drawn this past Tuesday because I was meeting with the hematologist for the first time. My husband needed my car on Tuesday so I opted to drive the truck. I got to the doctor’s office only to find that I had my necessary paperwork, a steno pad for notes, but not my Kindle (it was in my car). Following are the notes I wrote while waiting to meet my new doctor, the hematologist.
The first thing I notice about the waiting room is that it is quiet, there is no carpet, and only a few others are in the waiting room along with me. Then I see the sign on the counter. It says something about being patient because the wait could be an hour. I can watch old reruns of Bonanza or I can sit and try and pass the time writing in my steno pad. Maybe I will start my blog post that I had planned to do a few days ago. My doctor is a Medical Oncologist and Hematologist so there is a lot of serious treatment going on in this office. A woman in a wheelchair has just been pushed into the waiting room. And of course the first thing I notice is the can of Diet Dr. Pepper in her hand! I am containing myself. All I want to do is run up to her and shout out how dangerous this is for anyone and particularly someone with health issues. Of course, I am sure this won’t go over well. I can just see her face as she looks at this woman hiding behind the mask telling her what she should or should not be drinking.
The time seems to be dragging on. I work on this blog draft and I work on a short story. Anything to keep my mind occupied and off the reruns and what the hematologist is going to say about my leg and all the labs that have had me scared to death ever since I first learned that I have two mutations that can cause blood clots as well as a possible Protein S deficiency (although a test years ago said I didn’t have it).
Finally, the MA comes to get me. I am led to the back and all my vitals are taken. My blood pressure is 143/80. This is high for me. Is it because it is late in the day? Is it the stress of meeting this new doctor and not only having to discuss my current problem but filling her in on all my past history? Is it the Warfarin?Then I am asked to stand against a wall while she takes a picture of me. Smile she says and I laugh to myself. Who would know if I was smiling or not behind the mask? I am then led to a room to go over the paperwork I had filled out and the list of my many allergies and sensitivities. Okay…she wants me to go over each medication I have placed on the list and tell her what kind of reaction I get from it because she has to list all this in the EMR. We are going to be here all day just doing this. Finally she says can you tell me which are the most severe. Taking the paper and pen I begin putting an “S” by those that have caused the most severe reactions. As I do so I say things like “this one sent me to the ER”, “this one caused photosensitivity”, this one sent me to the ER” , etc. until I am finished with the list. The MA tells me the doctor will be in shortly to talk with me. By now I have been in the office about 45 minutes, something I am not accustomed to since Dr. Spitzer and Dr. Butler see me as their first patient.
The light in this room is so very bright! I can hear the clock on the wall tick tick ticking the seconds and minutes away. Between the light and the ticking of the clock I can feel my body being overstimulated! Should I turn off the light? I desperately want to drag a chair over to the door, step up on the cushion and yank the clock from the wall. Oh how I wish I had my Kindle. I could distract my mind from the clock if I could only just sit and read. My eyes look around the room in hopes of finding something to distract me. There it is. Sitting at the sink is a bottle of antibacterial soap. Oh, please don’t let the doctor come in and decide to use the soap. Is it possible I can stop her first? I can hear chatter outside my room. There is so much going on that my poor brain is in overload and I feel exhausted just from the noise and light. I am so thirsty! I don’t dare drink anything because I cannot risk having to go to the bathroom. I really want to be here and see this amazing doctor yet my body is yearning for quiet and dark.
The doctor comes in (continued in Part 2).
I apologize if my thoughts are scattered and this seems to ramble on.
First let me thank all of my new followers. I have been away dealing with my deep vein thrombosis. I will write more on that after I meet with the hematologist tomorrow afternoon.
It is hard to believe it has been a year since Allergic to Life was published. Where did that year go? So much has happened since then. If you haven’t already signed up to receive one of three signed copies or the chance for one of three e-book copies, please read the giveaway information below.
To celebrate this amazing year and all the wonderful people I have met, I am giving away three signed copies of Allergic to Life (US Only) on Goodreads. I am sorry that I can’t do signed copies for those of you outside the US. I am going to also give away three e-book copies to anyone outside the US. To receive an e-book copy, simply leave a comment below on why you would like to receive a copy. The contest will run from August 30, 2014 through October 30, 2014, my birthday.
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.
How many of you remember the Sponge Worthy episode from Jerry Seinfeld? The whole episode revolves around the discontinuance of the Contraceptive Sponge. Elaine stockpiles cases of the “sponge”. She goes to every pharmacy she can find to buy whatever is left. Then suddenly she is faced with the dilemma of whether or not her date is “sponge worthy”. Does she dare waste one of her precious sponges on him.
Recently I noticed that my vial of histamine was getting low. I emailed an order for more. I was told that because it had been too long since I was actually seen in Dallas, I would have to return for a visit before I could get any more. A visit to Dallas is not possible now. I am working on something else that may help me. In the meantime, I have to decide whether or not a reaction is “histamine worthy”. Do I try to ride out a reaction when I normally would have just given myself an injection and gone on about my day? OR Do I give myself an injection and hope I don’t have any reactions that will require histamine?
Just last week I had a reaction to someone’s cologne/perfume/whatever in my doctor’s waiting room. I went outside and was coughing and gagging so much that I disrupted the dentist in the office next door. He came outside to see if I was alright and to see if I needed any help. To my dismay I only had my inhaler and had completely forgotten to bring my histamine with me. By the time I got back into the office my usual BP of 112/70 was 149/90. I was stuck letting myself ride out the reaction when it would have been so much nicer to have calmed my body down.
What types of situations have you been in where you have to decide if something is “sponge worthy/histamine worthy”?
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