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.
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.
Open only to those who can legally enter, receive and use money sent via Paypal. Winning Entry will be verified prior to prize being awarded. No purchase necessary. You must be 18 or older to enter or have your parent enter for you. The winner will be chosen by rafflecopter and announced here as well as emailed and will have 48 hours to respond or a new winner will be chosen. This giveaway is in no way associated with Facebook, Twitter, Rafflecopter or any other entity unless otherwise specified. The number of eligible entries received determines the odds of winning. Giveaway was organized by Kathy from I Am A Reader and sponsored by the author, bloggers and publishers on the sponsor list. VOID WHERE PROHIBITED BY LAW.
CLICK ON THE RAFFLECOPTER LINK BELOW AND BEGIN EARNING ENTRIES!
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.
I won’t say how old I am but it is one of those darn milestone birthdays. You know, the ones they make special cards for.
The interesting thing about this is that since becoming ill, I feel like I am in a time warp. There are many years that are totally lost in my mind. I remember what happened and all the bad things I went through during those years but yet it feels as if they didn’t happen. I shouldn’t be this age! It is like somehow even though my body and mirror tell the truth that indeed I am older, there is something in my brain that still cannot register those “lost” years.
I am not complaining about getting older, we all do it. And I am forever grateful that I have made it to this birthday. There were many days that I didn’t know if I would make it through the day, the week, much less to experience this monumental birthday.
My husband took me to lunch today to a special place where I can eat outdoors and they will accommodate all my food allergies. My daughter is fixing me dinner tonight.
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.
As in To Thin or Not Too Thin (Part 1), I apologize for this post seeming a little too long or rambling.
My doctor walks into the room. She is wearing a lab coat over a very smart outfit and carrying a small laptop computer. To my relief she does not walk directly over to the sink and lather up with the antibacterial soap! Instead she immediately tells me that her MA has advised her of my numerous allergies and sensitivities. She asks me if my mask helps and if I need to wear it year-round. I tell her that I wear it year-round but only in public where I need to protect myself from chemicals in fragrances and cleaning solutions. She also asks me if I have ever had a diagnosis of Mastocytosis (one of the mast cell diseases, is a rare disorder of both children and adults caused by the presence of too many mast cells (mastocytes) and CD34+ mast cell precursors). I tell her that I have not.
The doctor (hematologist) sits down with her laptop on the exam table and faces me while I sit in the chair. She beings discussing the ultrasound report from my right leg. The report leads her to believe that maybe this DVT was not new and perhaps in the final stages of healing (something my internist told me when I also had him review the report). I tell the doctor that my father had recently passed away and that I had spent three weeks sitting at his bedside in the hospital and later in a hospice house. I spent as many as ten hours sitting by his side during the night. Based on my history, she believes that this is most likely the cause of the clot. Also if this clot was not a new one, it is possible with all the stress I was under and the grief I was going through that I did not pay any attention to earlier pain or symptoms. The doctor tells me that she is going to speak to the radiologist and see if they can determine if it was an older DVT or truly an acute thrombosis. It was possible that I might not need any more Warfarin or in the worst case scenario I would need a low dose of Warfarin for three months (not six months). I discussed with her the doses given to me and my intuitive feeling that I needed to take a lesser dose. She agreed that I was correct.
We then began going over my lab results. I had three lab results that had me scared about my DVT and the possibility of future DVT development. The first lab she goes over with me is the Factor Five mutation. She tells me that since there is only one copy and because I am not a smoker or taking hormones, there was very little chance that this was the cause of my DVT. The doctor then discusses my MTHFR mutation. Again since I only have one copy of this she does not feel that is a factor in my DVT. Lastly she discusses my Protein S lab. Even though my level is below the norm (which can also happen during a DVT episode) and because I had a test years earlier saying I did not suffer from Protein S Deficiency) it also was most likely not a factor in my DVT and my Protein S Antigen Activity was normal. We will recheck my level a month after I have discontinued the Warfarin and see what it shows.
The doctor orders one more lab for me to have done before we meet again in a week (this coming Friday). I am asked to have a D-Dimer (is a fibrin degradation product (or FDP), a small protein fragment present in the blood after a blood clot is degraded by fibrinolysis. It is so named because it contains two crosslinked D fragments of the fibrin protein) and we will discuss the result of this, my next INR and the conversation with the radiologist at my appointment.
At the end of the appointment the doctor asks me when I had my most recent mammogram and if I had ever had a colonoscopy. I explained the colonoscopy issue (just the breathing the stuff one has to drink makes me ill) and my issue with my entire vein swelling and becoming hot and hard with a catheter. She suggested that I should just do a stool specimen for blood and if I should do the colonoscopy that I should go to a University Hospital like Stanford or USCF where they could better monitor me for a reaction or an issue. She was adamant that I not have one done locally as they would be totally unprepared to deal with any issues that might arise.
All in all I feel that the wait and all the over stimulation I enjoyed during the visit was well worth it. This doctor was knowledgeable, quoted the most recent findings on DVT and Warfarin, and completely understood my sensitivities (or at the very least did not make me feel uncomfortable). I am thrilled to have her as my doctor and as the one to manage my Warfarin and INR levels, which I am now only doing once a week.
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.
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”?
allergictolifemybattle Everything Copyright me 2012 Unauthorized use and/or duplication of this material without express and written permission from this blog's author and/or owner is strictly prohibited.