Catch-UP Monday: Kindness – revisited

I first shared this post on kindness on August 13, 2012.  I have had many conversations with others about what I wrote in this post.  I continue to try and live those words.

Be kind, for everyone you meet is fighting a hard battle. —Plato

I recently read this.  Those are powerful words!  I think in the midst of my battle for survival and the courage and hope to keep going, I sometimes forget that I am not the only one fighting a battle.   Others are fighting just as hard.  Their circumstances may be different but their battles no less frightening and painful than mine.

I remember sometimes when I would be in the midst of feeling so lonely, so isolated, so scared that I wouldn’t get better, my husband would remind me that “so and so” was much worse off than me.  Of course, in the midst of my own hurt, I didn’t care if someone was worse than me.  Those were not words I wanted to hear.    It would make me angry.  Angry at him and angry that my pain, isolation, loneliness and fear were not being taken seriously.  Eventually I would calm down as the “fight or flight” action dissipated.  Then I would feel bad that I hadn’t cared about the others, about anyone worse off than myself.

I am trying to not let my own situation overshadow all those who are also suffering.  I am also trying hard to be kinder to myself and be more accepting of my limitations.

I recently read a very well written piece about being kind to ourselves.  You can find it at:  http://juliatuchman.tumblr.com/post/27924568863/pet-shop-prophet

Catch Up Mondays: Why did my face feel like it was being pulled apart? – revisited

This was originally posted on June 13, 2012.  Surprisingly when I have looked at the search engine terms that have led others to my blog, this has been a question posed more than once.  I guess I am not the only one who has felt like this.  — A side note is that at the end I talked about my cover photos – – the cover is done and everything has been submitted.  Hooray!

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Can my home be cross contaminated with mold from another house?

Yes it can in my opinion! My home was cross contaminated from my workplace. I unwittingly brought mold and mycotoxins into my home via my clothes, shoes, purses and even my hair.

There are so many schools of thought on this and opinions from those who have experienced mold exposure and having to leave their home/work environment, from those who do remediation, from doctors and scientists who specialize in mold and their mycotoxins, and from those who have no understanding of mold at all.

What I believe is that when you leave your home that is contaminated with mold and their toxins (mycotoxins) and take your belongings with you, you are without realizing it cross contaminating your new environment. The mold spores and mycotoxins get spread through the air as clothing and furniture are brushed against other things  in moving them from place to place. The fan on your computer puts air out and dust that came from your contaminated environment.

Some believe that you only need to leave your paper, cloth furniture, clothing or porous items behind. Others believe you need to also not take your computer, refrigerator or other electronics that may have dust in them from the previous home or office. There are those that believe if a piece of wood furniture has a hard seal on it, it can be saved by wiping down with ammonia and possibly spraying more sealer over the wood surfaces. Others have had success in keeping their clothing by washing them in ammonia which Dr. William Croft believes can kill the mycotoxins.

I learned about the ammonia and clothing long after I had gotten rid of mine. Although for my own piece of mind, I don’t think I would have kept my clothes and taken a chance that it would work for me. After going through all that I have and still deal with today as a result of my mold exposure, the thought of doing something and risking that  the mold/mycotoxins are not being completing killed off is not something I want to do.  Risking a re-exposure and worsening of my conditions is just a risk I cannot personally take. Not only have I had to throw away clothes from my home that I had either worn to work or washed with the work clothes or stored with the clothes, I have had to throw away clothes after exposures in defense doctor appointments.

This question has been posed in search engines that have led others to my blog.  To those  who follow my blog and who have experienced mold exposure and cross contamination, I would love to hear your responses to this question.

DISCLAIMER:  I am not a doctor, mold remediation specialist or expert in the area of mold and mycotoxins.  Anything I say is just my opinion based on my own experiences.

Versatile Blogger Award – TWO NOMINATIONS!

WOW!  I have been given this award by two fellow bloggers.  I am humbled to have received it twice in the past week.  This is my third award.  Before I get to the rules I would like to thank  Connective Tissue Disorders and The Allergista for giving me this award.

VERSATILE BLOGGER AWARD RULES:

• Thank the person/persons who gave you this award and include a link to their blog.
• Select 15 blogs/bloggers that you’ve recently discovered or follow regularly.
• Nominate those 15 bloggers for the Versatile Blogger Award.
• Tell the person/persons who nominated you 7 things about yourself.

7 Things about me (I hope I am not repeating myself here.)

1. I can’t sit and watch a movie unless I have some kind of hand sewing or crocheting in my hands (usually my embroidery towels)
2. I never learned to skate.
3. I love to sip a good cup of strong hot green tea and despise coffee (even the smell of it).
4. When I have a reaction, my right hand turns cold but not my left.
5. I don’t like rollercoasters.
6. I love to bake even if it is just to give it away.
7. I can’t whistle no matter how hard I have tried or how many have tried to teach me.

My 15 Nominees (In the past few weeks I have discovered several new blogs that I am enjoying and learning from.    I have mentioned a couple of blogs that I have been following a little longer but who I don’t believe I have mentioned before.  I found it difficult to do 15 nominees because I follow so many.)

1. Hold the Sulfites – I discovered this blogger after posting about sulfites on my blog.
2. Rarasaur – I love the writings on this blog.
3. Bored Sick  – The story of a young woman dealing with dysautonomia .
4. Adventures of an Allergic Foodie – I just found this blog and am excited to read more.
5. August McLaughlin – I recently discovered this blog about writing.  August hosted the recent Beauty of a Woman Blogfest that I participated in.
6. Oh What a Pain in the… – This blog talks about living and coping with chronic pain.
7. Sprue Story –  humorous look at living with celiac disease.
8. West Coast Posse – She talks about her struggles with infertility and there is a link to her blog Gluten Nazi Mom Blog where she talks about going gluten-free.
9. The Other Courtney – A sleepwalker who also talks about her allergies.
10. Amaryllisturman – She writes on her experiences with products and trips to various eateries.  While I have food allergies, I love reading about her food adventures.
11. Quirkywritingcorner – Writes about various things but is also dealing with chronic pain.
12. Relfections of Grace Home – Wonderful Christian writing.
13. Ranting Chef – Another blog that I love to read even if I am not able to duplicate many of his wonderful recipes due to my allergies.
14. Connective Tissue Disorders – Discusses Marfan (a connective tissue disorder that I was not aware of before following her blog)
15. Laura Jean Treat – May daughter’s new blog.  Her goal when she isn’t too busy with school and studies is to begin a photo blog of our family.

Addicted to QVC?

You are probably wondering what QVC has to do with my illness.  I have never been one of those home shoppers.  If I wanted something I went to the store and bought it.

In 2000 at the height of trying to figure out what was wrong with me, the depression mounted and it mounted.  I have spoken in my book about talking to a friend of mine, a lay grief counselor, and telling her that I knew what drove people to suicide.  It is that deep pain that you cannot describe.  Not the physical pain like I had with the sinuses, my left eye, and the whole left side of my face.  It was an inner pain that I could not and to this day cannot truly describe or define.

It was during this time that I found it hard to sit in the family room with my husband and watch television.  I couldn’t stand dramas because I was living in a drama filled world.  I didn’t want to watch comedies because I couldn’t find anything funny in my life and the comedies just made me crawl deeper into my despair.  A few years before this we had purchased a second television for our teenage daughters to sit in our formal living room and entertain friends.  I found myself migrating there most evenings.  I would flip through the channels as in a daze.  One night I landed on QVC.  From then on I was hooked.  Every night after dinner I would plop into an armchair in the living room and tune in to QVC.  I just sat and watched the mindless chatter about purses, shoes, kitchen gadgets and jewelry.  One night while feeling particularly depressed and alone (even though I was not alone) there was a sapphire show.  I watched and for some impulsive moment, I picked up the phone and ordered myself a ring.  I was still managing to work at the time and had it delivered to my work address.

The box arrived!  I was so excited to open it up.  All my co-workers were asking what it was.  Was it a special occasion?  I finally told them no, it was my “depression” ring.  I bought it just for me to see if it would perk me up.

My depression ring.

I have made only one other impulsive purchase from QVC.  This happened in 2003 while I was sitting in my robe on a futon chair recovering from a hysterectomy, dealing with an exacerbation of all my allergies and sensitivities, and facing a possible sixth sinus surgery.  As I sat in my condo all alone, I found myself once again tuning in to QVC.  This time they were selling beautiful gold ankle bracelets.  I saw one and just had to have it.  Before I picked up the phone to order I called home to my husband in California.  We were spending horrendous amounts of money for my treatment, my condo, and my food.  I wanted to get his permission.  My dear husband, knowing the state I was in, just told me to order it.  I ordered it and wore it a few times while there and then came home with it.  One day I thought I would wear it and when I went to put it on it broke.  So in my jewelry box sits a 14k gold ankle bracelet that cannot be fixed.  The strange thing is that I have never worn an ankle bracelet in my life prior to this and what made me think I wanted one or even would wear one is beyond me.

Being sick, whether your illness is chronic or invisible, often does strange things to your way of thinking.  You are desperate for answers and a cure.  You just want something to make you feel better even for a short while.  I have often told others that if I were a drinking person, I would just be drunk.  You make impulsive decisions or purchases.  I do, however, wear my ring daily as a reminder of where I was and how far I have come since that night sitting in the armchair, staring at the television, and grabbing the phone to place the order.

How many of you find yourselves making these sometimes irrational and impulsive purchases?  If you have, do you think being sick had anything to do with it?  Or did it just exacerbate impulsiveness?

Sinus Health

As most of you know from following along here with me that I have major sinus issues. It all started when I was exposed to mold in my work place and then it decided to set up housekeeping in my sinuses, my left sinus in particular. I was instructed to irrigate my sinuses daily and up to four times a day when fighting an infection or allergens. I have irrigated always with salt water but at times have also added baking soda, betadine or silver. Sometimes upping the amount of irrigating helps keep an infection away and sometimes it doesn’t.

I have had numerous sinus surgeries but thankfully nothing since 2003. I take antifungals as well to keep the fungus in check.

 There is a simple saline nasal spray that some have used to keep their sinuses clear and help with swelling and inflammation.

 Some swear by their Neti pots.

Then there is this contraption.

What my doctor recommended, however, is the Grossan Sinus Irrigating system.  I have immotile cilia most likely from all the infections.  What I like about my Grossan system is that there is a pulse to the water similar to a Waterpik.  I can adjust the flow and pulse of the water entering my sinuses thereby getting more of the mucous to come out of my sinuses.  This is the system I now use.  I also now buy Saline Solution from the pharmacy rather than having to mix my own.

My Sinus Irrigating System

Sinus Nebulizer

My Nasoneb Sinus Nebulizer

The nebulizer unit – the two prongs are for each side of the sinus.

I have had a few search engine queries about sinus nebulizers. The first time I did a sinus nebulizer treatment was in 2001. I was given nebulized Amphotericin-B for my fungal infection. I had been taking oral antifungals and was having horrendous herxheimer reactions and the ENT I saw in Southern California thought this might be a good next step to try.

I received a phone call at work from the compounding pharmacy regarding arrangement for having a nebulizer and the medication shipped to me. Then I was caught off guard. The pharmacy said that while my prescription plan would pay for the nebulizer ($150), they would not pay for the compounded Amphotericin-B. Two weeks worth of treatment would cost $1200.00. I nearly fell off my office chair. I told them that I needed to contact my insurance carrier first. I phoned and pleaded and pleaded. I was told that it was not covered because it was considered experimental treatment (yet if I had had IV Amphotericin-B it most likely would have been covered). I phoned the pharmacy back. What choice did I have? I was deathly sick and needed to kill the fungi in my sinuses. The pharmacist put me on hold and then came back with an offer. If I was willing to be put into a study, I could get the medication for $300.00. I joined the study. The medication caused all kinds of side effects for me. After many phone calls to the pharmacist to ask questions, I ended up taking my inhaler and Benadryl fifteen minutes before the twice daily treatments to stop the tightness in my throat and the severe coughing. I also after the first week, had to take a leave of absence because I had literally no voice with which to answer the phones at my desk.

Since that time I have tried Amphotericin-B again but it made me very sick. I then did itraconazole with moderate success. I have also taken nebulized antibiotics through this to get directly to the infection and not have them pass directly into my gut. All of these treatments cause headaches and nose bleeds. They are not fun to use either. I have to set up the machine near the sink, mix the saline with the medication, lean over the sink and breathe the nebulized liquid into my sinuses until it is gone.

Oh the pain of it all!

I have talked in several posts about trigeminal neuralgia and the fact that I suffer from it.  For some unknown reason it has picked today to rear its ugly head.  The nerves on the left side of my face hurt and burn.  It hurts to blink my left eye and the left side of my lip feels numb.

There isn’t much I can do for it.  I am preparing for my LDA treatment on the 15th of this month and have to be especially careful of anything that I take.  I have compounded Tylenol but am not supposed to be using it right now.   The only option right now is to heat up my bean bag and place it on my face to see if the heat will calm it down.

Ground Hog’s Day

I know that I am a little early for celebrating Ground Hog’s Day but I had a repeating dream last night. I was not in a deep sleep because after the dream repeated itself I realized that I was aware of the dream and could think about it.  I began thinking about the dream and trying to analyze it.   I immediately thought of the movie Ground Hog’s Day because the dream would repeat itself over and over as if it were a recorded loop. After a while I decided that I had to get up and write things down if I was ever going to release myself from the grip of this dream and actually sleep. At 2:30 this morning I got up. I grabbed something to eat, made something warm to drink and sat in bed with my steno pad.

It was the kind of dream where you wake up and wonder where you are. How did you get there? What happened to the time that you are missing in your mind? I often find myself wondering where the time went. One day I am a forty-four year old woman and the next I am fifty-eight years old. I spent so much time and energy fighting constant illnesses and infections, battling allergies and sensitivities, going through surgeries, living in isolation, fighting for validation in court, and fighting for my life, that it is hard to grasp where the time went. It is as if I went to sleep young and healthy and woke up old, sick and gray. There are no major events or excursions that one might have to mark the passage of over ten years. Yes, my daughters graduated from college, one got married and grandchildren were born. Yes, I had birthdays and anniversaries but these birthdays and anniversaries weren’t really celebrated in a way that would leave a positive impression.  There were no big parties to celebrate a milestone birthday or anniversary.  I didn’t go on any big trips across country or to Europe.

This dream may have been precipitated by a book I am reading, Before I Go to Sleep: A novel. In this book the main character has had an injury that allows her to retain memory as long as she is awake but once she goes to sleep those memories are gone and she wakes to find herself in a strange place and in a body that is older than she remembers.  I can sympathize with the character in this novel.  There are days when I look in the mirror and wonder who the person looking back at me is.

The loss of time topic, so to speak, is a conversation I have had with others who suffer from Multiple Chemical Sensitivity and other Invisible and Chronic Illnesses.  We all share the same sense of loss of time.  When asked how old I am, I have to think because it is hard to fathom that time went on without me fully participating in a “normal” life.

I don’t sit and bemoan this any more, but I did.  It used to fill a lot of my waking hours.  There are times as in last night’s dream that these questions haunt me.  I realize that things happened during that time.  I lived through it but there are a lot of painful and scary moments during that time that may act as a sort of amnesia and thereby leaving me with a sense of time lost.

With any luck after sitting up this morning writing in my steno pad and typing it here, that sense of loss will be gone and the woman in the mirror will feel more familiar and less a stranger.

How to tell a sinus infection is gone.

This search question showed up this week. For some, just feeling better and having no more pain and symptoms will signal that a sinus infection is gone. For others, and this has happened to me, a sinus culture is required to make sure there are no more detectable bacteria left. I have finished an antibiotic thinking I might be better, days later feel horrible again, only to find that the infection we were treating was gone but a new one had emerged in its wake. It is possible that the first culture only showed one bacteria because it was the most prevalent and once it was gone the other became detected. The antibiotic may have only worked on the first bacteria and allowed the other one to continue growing. My advice is that if you are not sure if the infection is gone to have a sinus culture done to detect any bacteria and to have a sensitivity test done to see what antibiotic will kill off the bacteria present.

I hate antibiotics but with the horrible ordeal my sinuses have been through between strange bacteria that my ENT has never heard of before and the fungal infection, I have had my share of them. We are as cautious as we can be when deciding treatment. Sometimes a good cleaning of my sinus passages and copious amounts of saline irrigating can stop the infection from becoming so rampant that I have no choice but to take an antibiotic. The trick for me is to catch it as early as possible. I also have to remember that if an antibiotic is taken, I need a probiotic.