Wednesday, July 16, 2014

so.... this is what stigma looks like

sigh. this is a post I never thought I would write. ever.

but I am. because this happened and I need to process.  And I process through writing.

some background:
I have felt like crud all summer.  It started with strep throat & a sinus infection.  I thought I was better.  Then last week I had a soar throat and an ear ache.  I went to my doctor and she said it wasn't strep, but I did have an ear infection.  I started taking another round of antibiotics.  After a few days I was having chills and a slight fever on and off, and my ear is all clogged like someone has their hand over it so I can't hear well.

Since I was not improving much I made an appointment to see if I could switch my antibiotics.  They switched them for me in June and I figured that is all I needed.  My regular doctor didn't have any openings until later in the week so I scheduled my appointment with another doctor in the clinic.

now to the real story:
At the doctors office I explained my symptoms to the nurse and then again the doctor when he came in. The doctor said he would do a couple tests to see what was causing me to feel the way I did and then we would talk about them.

The nurse came into the room and tested my ears for pressure.  Apparently they are both fine, even though I can't really hear out of my left ear.  Seriously, ask my kids.  All week I have been telling them to stand on my right side because I can't hear.

Anyways.  Then I headed over to labs.  I overheard the technician asking how to order an HIV test.  My body immediately froze and I tensed up.  I knew what was coming and I didn't like where it was heading at all.  She came over and said she would be right with me that she needed to figure out how to order a test and then she would take my blood.  I asked her what the test was for and she stated, "HIV".  I told her I couldn't possibly have HIV.  That yes it is in my house but that I could NOT get it from my boys.  She informed me that she was only doing her job and following the doctors orders.

You all.  I lost it.  I was so mad.  There were two men there to get samples and transfer them to who knows where and I told them ALL about how HIV is transferred and that I wasn't doing any of those things with my kids.  They looked at me like deer before a car not knowing where to move.

One of my kids nurses walked by and saw me distraught.  She let me vent to her where I just broke down crying and stated that I couldn't have HIV and that this was stigma.  Through tears I said I was glad my oldest wasn't there to see what was happening.  She told me to get the test to prove the doctor wrong.  I calmed down a little, but told her I was mad.  Then she left.

When the technician was all ready I headed over for my blood draw.  I sat there in silence not looking at the technician as she took my blood.  Tears streaming down my face.  I felt so stupid for not walking out of the clinic.  I felt so violated.  I felt like I was doing my boys an injustice by sitting there and letting them take my blood for something that I cannot possibly have.  Like I didn't have a choice at all.

Then I went and got an x-ray of my sinuses.  And then I went to wait for the doctor.  By this time my husband had come as I called him somewhere around the time I found out what was happening.  We waited and I was shaking so mad at what had just happened.

The doctor came in.  He told me that it looked like my hearing was fine and he hadn't seen anything wrong with my ear.  Which still makes no sense as I can't hear from it.

He then went over my x-ray and showed me that I do not have a sinus infection.  Ok. Whatever.  He stated that he looked at my CT - Scan from a month ago when I did have one and that when I had one it wasn't that bad.  You all - I was throwing up, had a fever for days, and I slept about 18 hours a day for a week.  It was bad.

Then he said he ordered me an HIV test.  I told him I was really upset by this and that I didn't possibly have it.  He told me that he just wanted to rule it out.  I said I have ruled it out as I don't have sex with my children and I don't do drugs with them.  RULED OUT.  NO CHANCE of having it.  He said, "I don't believe you have it but you are exposed to it by being around these kids".

This is when I stood up and said, "I fight against stigma daily for my boys.  I don't have HIV, I can't have it by living with them. This is stigma and I am not staying to listen to you".  He told me that it wasn't stigma.  I shouted, "YES IT IS" and walked out, shaking, tears streaming, still feeling like crap.

You all it is stigma.  If there was no one living with HIV in my house this doctor would have NEVER IN A MILLION YEARS thought to test me for it.  It is utter non-sense.  It is ridiculous.  It is frickin 2014 and there are medical doctors out there who think you can get HIV from being around someone with the disease.

It has been a couple days and I am still in shock of what happened.  We are in a wonderful community where our friends and family have embraced our children with open arms and love.  When we first brought Tariku home we were so nervous for our friends and family to accept him and not be afraid.  They were and are awesome.  They learned how the disease is spread, they have supported us.  We have had no stigma at all from them.  Some questions, but we started the process of adopting a child with HIV with questions, and so we answer them as best we can.  We teach others.  So they are not afraid.

For stigma to be thrown in my face from the medical community is like a punch in the gut.  I never thought it would come from anyone in that profession.  It is pure ignorance on his behalf.

What I want you to know is this:

1. YOU CANNOT GET HIV from living in a normal household situation with someone who has it.  Not from drinking from the same cup, sharing a toilet, giving hugs or kisses.  You just can't.

2.  There are THREE WAYS you can get HIV:  1. Sexual intercourse 2. Sharing drug needles (any needle that is closed).  3. Mother to child transmission through childbirth or breastfeeding.

So this is where I sit.  trying to process an event that has me baffled.... while also trying to get better (thankfully the antibiotics I am on seem to be working now).

If you want or need any information on HIV please go to the following sites for information:

Project Hopeful

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AIDS.GOV

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*Update:

Prior to writing this post I contacted my children's Infectious Disease nurse.  She was upset by my experience and told me I had every right to be.  I also told my children's pediatric doctor, as we had an appointment with her the following day for one of my kids.

Yesterday afternoon I received a phone call from the doctor.  He called to apologize.  I told him why I had been and am still upset by what happened.  I stated that had I not had children with HIV in my house he would have never ever tested me for that.  He told me I was right, said that he was in the wrong and that he was sorry.

I don't know if one of the doctors I informed or one of the nurses that saw me that day contacted the doctor to let him know he was in the wrong or if he thought of it himself.  I guess I don't really need to know as long as he understands that he was wrong and that he cannot treat his patients in that manner.  I told him I did appreciate his apology and that I hope he learned from his mistake.

I will be writing a letter to the office manager to follow up.  I feel they need to know about my experience.  I am thankful for an apology, but I also need to know that this will not ever happen again in that office.

Wednesday, June 25, 2014

running on e


For the past couple of weeks I have been sick.  This week I have perked up a bit more, but my energy level is still super low.  I have been recovering from strep that turned into a horrible sinus infection that literally knocked me out for days.  One of the first questions doctors ask you when you see them is how long have you been feeling this way?  My original answer two days..... but, I could feel something stirring for awhile.  
This past year has been a high and I think my high on life finally sputtered out.  My body is tired.  My soul is tired.  and I was running on e.  

I am helpless at taking care of myself.... and I don't mean pampering myself or getting time out.  I do that.  But really deeply taking care of myself, with good food, and sleep, and water.  When I don't get enough sleep, which is often, I turn to coffee or soda-pop and fuel myself with sugar.  It is just truth.  A realization I thought of when laying in bed one day last week.  

So here is to better snacks, more water, more rest, and a healthier summer.

Tuesday, May 27, 2014

my table


The Saturday before Mothers Day I got a great idea to start upcycling our picnic table.  This table came with our house along with a whole bunch of other junk.  It had a good frame, but the wood was falling apart and it sat unusable in the corner of our yard.  Aaron and I agreed that it would be great when it was fixed up but neither of us had it on our project list radar until a Mothers Day weekend.



That Saturday I went to Home Depot for supplies and have been working on this project since.  The first thing that I needed to do was take the old table apart.  This was actually the hardest part of the entire project as the screws had been rusted on.  


I was able to saw off a bunch of screws and our neighbor Jon gave me a power tool to use for the rest.  The tool scared the crap out of me though and after one screw, a half an hour of being scared and timid, I asked him to help.  I went to get my camera to take pictures of him helping me and by the time I walked out the door he was done.  Good call for asking him to help.



Next came sanding all the metal down, spraying it with rust converter and then putting a couple coats of spray paint over the top.  The rust converter turned it black and helped protect it from rusting again.  The spray paint I used also had rust prevention in it so it shouldn't rust for a while.



For the boards I sanded them down, painted them and then put a wet sealer on top.  The sealer will help the table last longer and be able to endure our extreme weather.  It has already rained twice and the water is just pealing off!





After everything was painted and dried I measured, drilled and attached the boards to the base.  This didn't take that long except that I needed longer screws for the seats so I had to run back to Home Depot for those.





The project was not hard but it took a while to complete because I was painting everything and I wanted everything to dry all the way before moving on to the next step.  I also took a few trips to the store because I forgot things along the way.

Victory!!!


I am so excited about our new table, it will be great for our family this summer as we love to eat outside.  We had our first meal on it Memorial Day, brats and hot dogs for its inauguration!  

As I was enjoying our first meal with our table I couldn't help but think of all the memories we will get to make sitting around it.  I have visions of our kids friends, our parents, and our siblings sitting on those benches.  What a wonderful addition to our yard.



Tuesday, May 20, 2014

thank you veterans


I am in emotional overload right now.  Last night I went to welcome by grandpa back from his day in Washington DC with fellow veterans on the honor flight.  All I can say is that it is emotional.  If you ever, EVER, get the chance to welcome a loved one home from an honor flight GO!  There are simply no words that can truly capture all the pride in the room for our veterans.  The love and words of thanks were just whispering out of every crevice and I couldn't help but be humbled to get to partake.  





My sweet grandpa is a huge teddy bear and wore his emotions loud and proud.  I adore him and how he shows his feelings.  Other veterans did too, along with their guardians.  My little sister got to be my grandpa's guardian and help him around the entire day.  She said the entire trip was amazing and a very emotional day.  From the band at the beginning to the final wave of the bus send off welcoming them home was a great experience.  





Since I can't really capture in words all my thoughts I will show you in a few pictures.  Thank you veterans and all members of service!  THANK YOU.




























I love you grandpa & I am and always will be so proud of you!