Category Archives: Allergic to Life: My Battle for Survival

Black and Blue From Head to Toe

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 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 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 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.

To Thin Or Not Too Thin? (Part 1)

Hello Everyone

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.

 

 

My “Allergic to Life” Giveaway Ends Soon!

Hi Everyone

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.

Be Careful Around Sharp Objects

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.

Is this reaction Histamine worthy?

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”?

Are you 1 in over 1,000,000?

In honor of Invisible Illness Week, I share this video with you.

 

An Allergic to Life Giveaway

You all know that I am celebrating the one-year anniversary of publishing Allergic to Life where I am giving away books through Goodreads and my blog.

This week is also Invisible Illness Week.  In celebration of Invisible Illness Week, I am also giving away a copy of Allergic to Life: My Battle for Survival, Courage, and Hope on the Chronically Content blog site.  Please visit this wonderful blog and enter for another chance to win a copy of my book.

National Invisible Illness Week

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.

Allergic to Life’s 1 Year Anniversary

Book Cover

What a ride it has been since Allergic to Life: My Battle for Survival, Courage, and Hope debuted last year.  I have been fortunate to have had my first blog tour with some of my amazing followers as well as through Rave Reviews Book Club. It was amazing being  spotlighted with both PNP Authors and Rave Reviews Book Club. Allergic to Life has received some wonderful reviews and exposure as well.

This past October I celebrated in a BIG way by having a book launch party at the home of my dear friends Steve and Victoria.

A book can never have too much exposure

 

A friend and classmate Jerri Hansen, author of Fences and My Life on the other side of the Tracks,  surprised me with a book trailer she had made for me.

 

 

I also had a book trailer made from Nonnie Jules, author of Daydream’s Daughter, Nightmare’s Friend and the Good Mommie’s Guide and owner of 4WillsPublishingthat features music made specifically for the trailer.  

 

 

Pattimari Cacciolfi, author of Sometimes our Greatest Misery is our Greatest Happiness and Stolen Identity, of PNP Authors made a book trailer introducing me and Allergic to Life.

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.

I appreciate the support all of you have given me not only on this blog but with my book as well.  You are all so very wonderful!

Allergic to Life can be purchased at Amazon and Barnes and Noble.  Signed copies may be purchased at Kathryn’s website.

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Homelessness Part 5: First Aid – could be graphic for some – revisited

In this final installment of Vanessa’s five part series, she discusses first aid and what she feels is paramount to survival on your own.  I first met Vanessa on Planet Thrive.

This is the final installment of a five part blog series on homelessness and survival.  In this section I will address first aid as a homeless person with limited resources.

Disclaimer:  the advice in this section does NOT constitute medical advice.  Please contact 911 or local emergency personnel or your physician if you are having any medical emergency that requires professional medical intervention.

Since I am now uninsured, I informed my doctors that the only way I was going into a hospital was if:

A – I have something large sticking in me.

B – I have something that belongs internally coming out of me.

C – If I am bleeding profusely and cannot stop it. (major artery)

D – If I have broken a major bone needing surgery and/or setting (toes and fingers don’t count).

E – Large open wounds that were beyond my ability to stitch shut (yes, I will stitch some of my wounds shut). i.e. large puncture wounds

F – An infection that either will not go away or is getting worse.

G – I am bitten by an extremely venomous snake or insect (Black widow and rattlesnakes come to mind)

H – I am bitten by an animal. (this includes being mauled by a bear or cougar).

I – Extremely sick to the point of utter incapacitation by pain, dementia (would I know to call for help?), or illness OR death was imminent if I don’t do something.

Everything else I will try to do myself.  These are my general rules and I do not recommend others following these, especially if you have health insurance and do not have to endure prolonging going to the hospital.

Kidding aside, I know that prolonging necessary medical treatment will make whatever I have worse and harder to medically manage, possibly leading to further complications.  The harsh reality for me is that I am uninsured and I have MCS.  I have been in a situation where I told medical staff that I had MCS and was treated like a child.  An x-ray tech that came to my room was swimming in cologne and I asked for him to open the window and he would not.  He pushed me here and there to get the x-ray while I was trying not to cough.  As he left he said, “There’s nothing wrong with you” even though I was spitting up phlegm right in front of him.  I will NOT endure this again.  This is why I came up with the above list and shared it with my doctors so if they received a call that I was hospitalized, it was serious.

I strongly recommend everyone to take first-aid courses if possible, learning CPR and the Heimlich maneuver.  Homeless people need to delve a little further by reading about wilderness first-aid when help is hours if not days away.  In many of the places I stay the best possible response time in usually 2 hours for them to get to me.  The things that I have learned are stop gap measures to enable me to get out to where EMS can reach me faster or until they reach me.

I will cover what I carry in my first-aid kit and suggestions for reading material and resources to get educated on what to do in an emergency.  Again, this is not a substitute for taking first-aid classes and/or doing your own research.

My first aid kit, left to right:

* Various size latex free band-aids (cloth), a couple of the transparent bandages.

*Quick Clot bandage for larger wounds which contains a compound to help blood coagulate faster.

* Steri-strips for butterfly closures (using the strips to close larger wounds that do not require stitches).

* Variety of tapes, different kinds and sizes.  Cloth adhesive, fabric adhesive, etc.

* Two small vials of baking soda (for upset stomachs or heartburn or insect bites)

* Cough drops

* Tincture of Iodine

* Alcohol and Benzalkonium Chloride (from Dr. Rea’s) wipes

* Latex and non-Latex gloves

* Large feminine hygiene pad (for gynecological emergencies or great for large chest or abdominal wounds as an emergency field dressing). (Should carry two)

* One roll of gauze and two rolls of adhesive wrap bandages (for sprains/strains).

* Snakebite kit

* Neosporin/Bactracin

* Excedrin and Aspirin

* Cotton swabs in a vial for applying ointments and iodine.

* Large 5×7 wound dressing

* Kit for foot injuries (blisters, corns, etc).  Contains moleskin, band-aids and a needle to pop blisters.

* Dental floss and Ambesol for dental emergencies

Things I need to add yet (as finances allow) – scalpel, EMT scissors (for cutting through clothing if necessary) and syrup of ipecac (for inducing vomiting if poison is ingested), suture kit (a proper one), dental emergency kit (with material to replace a lost filling, temporarily).

Some of these things have expiration dates (like the Neosporin, Excedrine, etc) and it is important to go through this bag at least once a year to ensure that everything is current.

Things I have in my car for quick first aid (not shown)

* Activated Charcoal (for stomach flu or accidental poisoning or uncontrollable diarrhea).  Warning:  drink lots of water with this and it will turn your stool black.

* Vodka (in a Witch Hazel bottle so I don’t have issues with alcohol containers in the car.  I carry the bottle in the trunk)

* A variety of band-aids and moleskin

* Cheese cloth

*Cut strips of cloth from an old shirt, preferably cotton, for making bandages and compresses

* Tweezers

* Needles (for digging out slivers or other small things in the skin)

* An antibiotic salve with all plant ingredients, Golden Salve by Equinox Botanicals

* Azulene oil (from the Yarrow plant), good for burns, wind chaffing.

* Dercut homeopathic cream for abrasions, cuts, rashes

* Traumheel homeopathic salve for bruises and sprains.

* Clay face mask cream (ready to use).  Good for applying on bites, pimples, skin eruptions (easier than making a baking soda paste)

* 100% Tea Tree oil for antibacterial cleaning and dressing of more severe wounds or infected wounds and for tick bites.

* 100% organic, extra virgin coconut oil (Barleans cooking oil).  This is great for sunburns, dry skin and small abrasions, scrapes.  Keeps skin supple and aids forming scabs on wounds.  Also helps to minimize scaring. (but not recommended in grizzly country, smells strongly of coconut).

(note:  I do not carry aloe any longer as there are no longer 100% aloe gels.  They all contain preservatives of some kind and some need refrigeration)

*Astragalus capsules for when I feel like I am getting sick.  Some people carry Echinacea as well.

I recently received an email from my Naturopaths office regarding first aid kits and equipping them with less toxic homeopathic items.  I am copying from her list and sharing this for those who struggle to find acceptable first aid alternatives.

Digestion:

– Charcoal caps or charcoal powder

– Ipecac syrup

Bites and Stings:

-Homeopathic Apis 30c (oral) – for stings with swellings (bee stings)

-Homeopathic Ledum 30c (oral) – For bites (mosquito or spider)

-All purpose herbal salve (either over the counter like Golden Salve or from your naturopath or homeopath)

Cuts, Abrasions and Burns

-Calendula Succus Tincture – dilute with water and clean wound

-All purpose herbal salve (after wound is cleaned)

Larger wounds that need more attention:

-Homeopathic Cantharsis 30c (oral)

For Burns or Sunburns:

-Lavender Essential Oil – Apply 1-2 drops topically to burns

Bruises and Muscle Aches:

-Homeopathic Hypericum 30c (oral) – for shooting pains or nerve pain

-Homeopathic Arnica 30c (oral) – for bruises and muscle aches

Miscellaneous:

-Hand sanitizer called “Clean Well”

-Epipen (prescription needed) A personal note on Epipens.  I used to carry two but they were ruined due to my inability to keep them from freezing or getting too hot or exposed to direct sunlight.  These need to remain at a fairly constant temperature to keep the epinephrine from degrading and becoming useless.  Keep this in mind if you are living outside 100% of the time with no way of keeping these safe.

-Euphrasia Eye drops – cleansing eyes.  Weleda recommended as it comes in single doses/packets.

-Electrolyte Replacement Packets

I do not recommend getting the small first aid kits that you see in stores.  These are virtually useless (except the container can be used for you to build your kit) as they only address small injuries and not potentially life threatening ones.  Outdoor stores and backpacking stores (REI comes to mind) carry more advanced first aid kits, but they are expensive.  I think it’s cheaper to make your own.)

Here are some things I have improvised:

-Deodorant for skin protection against the wind on my face.  I use Alba Botanical with baking soda and lichen.  This does have a slight odor to it even though it is fragrance free (no added fragrances, but the essential oils are what gives it its odor).  It is waxy, but goes on smooth.  It does not protect against the sun.  As always, do a small test patch to make sure you do not break out.

-Duct tape for slivers.  This is ok, but not always effective for deep slivers.

-Oatmeal for poison ivy.  What I did was break conventional wisdom and scraped the blisters with the dull edge of a knife (wiping the blade each time to prevent spreading).  I then boiled down oatmeal so it was thick.  I separated the water from the oatmeal and kept the oatmeal juice.  I placed the warm oatmeal in a cheese cloth and applied it as a dressing, letting it set for 30 minutes.  After wards I would use the water to dab on the blisters (sometimes using vodka to dry them out).  I did the dressing twice a day (or more if the itching was really bad).

-Apple sauce for diarrhea and whole apples for constipation.  The apple sauce is high in pectin and helps with diarrhea.  The fiber from the raw apples help to facilitate digestion and bowel movements.

-Pitch from either the Douglas Fir or Sub-Alpine Fir for small cuts and abrasions.  I have also used the pitch to make an improvised splint with strips of cloth and a large amount of pitch.  The pitch hardened making support for the arch of my foot and the compounds in the pitch helped with the inflammation.  I do not recommend the Yellow Pine, Lodge pole, Juniper or Ponderosa as the pitch does not seem to harden (make sure to have a tree or plant guide to tell the difference).

Again, this is not a substitute for learning first aid on your own; this provides suggestions for handling some emergencies.

Educational Resources:

Wilderness Medicine, 5th: Beyond First Aid by William W Forgey M.D. (available at Amazon.com in paperback)

American Medical Association Handbook of First Aid and Emergency Care by the American Medical Association (available at Amazon.com)

Build the Perfect Bug Out Bag:  Your 72-hour Disaster Survival Kit by Creek Stewart (available at Amazon.com)