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 2

If you don’t already know about the saga of my DVT (deep vein thrombosis/blood clot), please check out my first blog posts:  I’ll take a little “rat poison” with that!, Be Careful Around Sharp Objects, and To Thin or Not Too Thin (Part 1).

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.

 

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.

 

 

Good News? and Bad News About Pesticides in U.S. Waterways

Kathryn Chastain Treat:

What are your thoughts? Thank you Jennie for sharing this information.

Originally posted on Jennie Sherwin:

images[6]

In a New York Times article on September 12, 2014, Michael Wines reported the results of a study by the U.S. Geological Survey that collected data on pesticides from 1992 to 2011 at over 200 monitoring locations. The bad news is that the study found pesticides and herbicides in nearly every waterway in our country.

The good news, however, and decidedly the good news is for only two types of waterways, is that levels declined from the first decade of the study to the second in agricultural streams and other streams other than urban streams. As Wines writes: “From 1992 to 2001 17 percent of agricultural streams and 5 percent of other streams had at least one pesticide whose average annual concentration was above the maximum contaminant level for drinking water. But in the second decade, from 2002 to 2011, the survey found dangerous pesticide concentrations in only one stream…

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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.

upcoming EDS & POTS webinar…

Kathryn Chastain Treat:

For those of you with POTS or know someone who does, this webinar might be very helpful. Thank you Lindsay for sharing.

Originally posted on Musings of a Dysautonomiac:

October is Dysautonomia Awareness Month! To commemorate the occasion, Dysautonomia International is co-hosting a free webinar in conjunction with the Ehlers-Danlos National Foundation.

The webinar is on October 9th at 8:00pm – 10:00pm EST.  You can register for the webinar here.

Both Dr. Peter Rowe and Dr. Satish Raj (who is like a Dysautonomia superstar) will speak during the webinar.  As I mentioned above, it’s free to all, whether you have EDS, POTS, or love someone who does!

Note: I am not an employee of or in any way affiliated with Dysautonomia International, Ehlers Danlos National Foundation, or the above doctors. Just passing along the info for anyone interested in attending.

Smell ya later.
– Linds

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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.

Day 271 In the Pursuit of Love (Not Again?!)

Kathryn Chastain Treat:

Thank you Colleen. Feel better.

Originally posted on Life in the City with a Future:

fogcooperrdYup. Bring on the fog. Today was another day of exposures. Some might wonder why does she keep doing things that make her sick? Well I wonder right back why do people keep doing things that make me sick?

cormorantoswegoriverI’m not ready to do anything drastic but seriously I should be able to leave my house. It’s not like I’m going to the mall or places with high risks of exposures. This week I was sickened by an EMT (emergency medical technician) who wore perfume to treat my mom who couldn’t breathe and almost had to treat me even though I was feeling fine until she got there.

foggymorningparsonsrd

Shouldn’t all people be able to receive SAFE medical treatment especially in their own homes? My parent’s home was safe for me to go into the last few years — a week later I’m still getting a headache from the perfume. My…

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I’ll take a little “rat poison” with that!

rat poison

Well I have officially been on Warfarin aka Rat Poison for three days to treat my partial deep vein thrombosis (DVT). I am patiently, or not so patiently, awaiting the results of my first INR blood work (basically the clotting time of my blood while on Warfarin). Depending on the number, my dose of medication may need to be adjusted.

My husband and I spent two hours in the car outside the local ER when I took my first dose of 5 mg. on Tuesday. My doctor said if I had no reactions I could take an additional 5 mg.  If I didn’t feel comfortable doing that, she said to stay at 5 mg. until my first test. It was 7:30 by the time my 2-hour wait was over. I was taught back in Dallas with my energy work that I could ask my body if something was good for me.  After working with things I knew were safe and getting no specific response, I began using bananas (anaphylactic) and mushrooms (mold). Both times I got this incredible whonky feeling in my head. I went back to something that was safe and no response. Finally I asked if I should take another 5 mg tablet.  Again, I got the whonky feeling in my head. I decided to keep my dose at 5 mg. until my results come back today.

The difficult part is making sure that I don’t overdo on foods with Vitamin K. My biggest difficulty is going to be my green tea. I am not sure exactly how much I can take without causing too much interference with my INR levels.  I want to dose to my diet and not the other way around.

It is very possible that I will be on this “rat poison” for six months. I am not sure how it will affect my LDA treatments either. I have emailed my doctor to see if this is going to be another issue I have to deal with.

My right leg is still swollen and painful. I can stand in the kitchen or walk around for short periods and then find myself needing to prop up my leg and add some heat to it. I can sit here in the office at the computer as long as I keep my time limited as well.  It is so frustrating!!! I have so many things to do and everything is impacted by my darn leg and my DVT.

My time is up here in the office. I am off to elevate my leg and dream of a big glass of iced green tea.

 

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”?