Stay Out!!

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Okay I Have a huge pet peeve and I am going to share it here because well, where else!!

I get so tired of going to public restrooms that are designed for handicapped and well anyone from a little kid or a parent with a couple kids may be in there.  

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Doesn’t matter that there may be three or four other stalls open. OR the family restroom, that I leave for families, unless I cannot get into the stall; because I am not a family, but ONE PERSON of course everyone wants to go in there, because it’s the big stall!!

But what about the person that MUST go in there.

Because their wheelchair or walker wont fit in any other stall.

Or the mom with a medically or physically challenged child that they must help.

Stay out of that stall unless you absolutely need to be in there please.

I waited over 10 minutes today for that stall, because I couldn’t go somewhere else. When you are disabled with chronic kidney issues and the wait is extensive, it only hurts you more.

It is literally, mentally and physically exhausting dealing with people who have no respect for anyone other than themselves.   

Trust me, i can tell if you have some reason to be in there.  I am that claustrophobic, high maintenance person.  That person, I get why they are in there.

What I am not though, is a fully walking person.  I must ride my scooter into the stall.

I NEED that stall.  So if you want to go read your cell phone in a bigger stall, go to the family stall.  Or better yet, just go to a regular stall, get your business done and get out!  There are other people waiting on those stalls also.

 

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Power Of Prayer

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(*all the  medical abbreviations are clickable to see what they mean)

When things go wrong, oh and they will go wrong…  You have to do a couple of things

1.  Either let it all go to God and trust that He will handle it,

2   Or deal with Satan’s outcome…

Dead-serious here.  

Let me give you some back story first. Since 2001, I am type-2 Non-Insulin-Dependent- Diabetes or NIDDM

Recently it has become insulin dependant  IDDM (in the last two years).  So not only have I been dealing with many doctors appts but at some place on either foot for the last two years, I have had a diabetic ulcer.  This happens because of a break down of the skin, inconsistent blood sugars daily, infections, and just a myriad of reasons how it can happen.  I have also had osteomyelitis twice in my right foot.

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Because of this, my right foot has been very susceptible to diabetic ulcers, and starting this past spring, I got a very small I mean we are talking extremely small blister between my pinky toe and the next one on my right foot.  In doing so, I learned a lot about what can and can’t happen.  In a matter of days, this very small sore, turned into a sore that was 1 cm x 8 cm and it tracked all the way to the bone (the deepness of it)

This was in February.  I changed dr’s during that time, from an Internist PA to a full-blown Podiatrist and Endocrinologist, so that I could get more aggressive about my care and prayerfully come back off of insulin and as many other complications that went along with the ulcer, and the high sugars and the bad A1C .  

Because of this, I have been to the Podiatrist, every other day for the last 4 mths and have also had a minor surgery where he took some bone out, so it wouldn’t be rubbing up against my other foot, which was part of the problem to begin with.

After the surgery the surgical site, being so stinking small, healed so quickly, we were all so surprised.  However the ulcer didn’t heal.  Dr.’s, Wound Care nurses and I were just bumfuzzled about what to do.  We kept treating it with Silver Alginate, we used a WoundVac and many other things.  This kept going on, from Feb until the first part of June, and I have finally had enough.  I had been in a DH Walker boot or a surgical shoe for almost 2 years for one reason or another from diabetes ulcers. Also off and on for almost 4 years on one foot or the other for some reason.

The ulcer I had kept getting bigger, and bigger, never losing any tracking and never getting any smaller, only bigger, no matter what treatment we did.  I even stayed up 3 days in a row because they put a woundvac on it and the woundvac wouldn’t stay plugged in.  So I had to hold the plug into the machine just so it would stay running.  We didn’t realize this until we went to plug the machine in on my foot.  So anyway, it has been an ordeal over the past few years.

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I was on many prayer lists all over the country and I KNOW people prayed for me, close and far away.   They prayed on Facebook, in Text, in email and called me and prayed with me, and then prayed in person.   I can’t tell you the number of people who prayed and I knew God had this under control!!!

So all this being said  My son was getting married in Seattle on June 13th.  Of course that meant a plane ride (actually 4) and going and going.  I just wanted to make it till then.  The dr and I came up with a plan of action before I left, and he had one more trick up his sleeve and then I made a very conscientious decision that, included amputation.  I was ready, made peace with losing a body part and knew after I got home from a 8 day vacation, I was going to lose a toe (while it’s just a toe) I’m pretty attached to my toes!!!  

It was a spur of the moment week while we were up there, and if they called to do something until the wedding day, it was one of those, be here in 30 min or so. I did NOT want to deal with wrapping, unwrapping, explaining and all the other stuff that goes with having a sore on your foot.  I did use my scooter while I was up there.  And I went from pushing myself in a manual wheelchair using my feet (which made everything worse) to using the scooter, so that friction of pushing with my feet was gone and that was a major plus!!

DISCLAIMER:  i DO NOT RECOMMEND WHAT I AM FIXING TO JOURNAL.  IT IS NOT WISE, IT IS PROBABLY ONE OF THE STUPIDESET THINGS I HAVE DONE IN MY LIFE MEDICALLY SPEAKING.  DO NOT FOLLOW MY WAYS, AND PLEASE SEEK YOUR DRS ADVICE FOR EVERYTHING.  THIS ISN’T ABOUT MEDICAL CARE IT’S ABOUT THE POWER OF PRAYER

Well during that vacation, I took a very minimalist approach to the care of my wound, for one thing.  I was just flat-out exhausted to doing anything with it.   i kept it clean, I kept it covered in silver and a band-aid.  and I prayed, I prayed hard.  I prayed to God for several things,

1.  Please let me have the strength to dance with my son at his wedding (had prayed for that one for months)

 2.  Please God if it’s your will, do not let the amputation go through, but heal my foot.

3.  Please just give me good blood sugars and to stay under control during this time.

okay.  now the wedding.  We left TX on June 10th, for 8 days.  When we get to Seattle, it is okay temperature wise, but quickly rises up into the high 80’s low 90’s.  i had just hit TX weather in Seattle.  So not only did I have to worry about my foot, but my breathing also.  When it is very warm, I can’t breathe at all.bandaid

My shoes that I brought to wear up there are leather tennis shoes.  They don’t breathe at all.  So right then and there, I decided to let my foot stay unwrapped and put the silver alginate on it with a band-aid. 

Seriously  Even after knowing the outcome if my foot didn’t get any better, or it would get worse.images (1)

I wore flip-flops to the wedding and really did nothing to protect my toe other than just keeping it clean and taking my antibiotic.  LITERALLY “Less is more” way of thinking.  The result was the same.  It was getting amputated.  Or it was getting well.

Because I believe so much in the power of prayer.  I once again prayed to God for His will to be done, for Him to heal me, completely or to make it abundantly clear that amputation was the way to get a healthy foot.

Well, you heard that old story, tell God your plans if you wanna make Him laugh..  He did a big ole belly laugh and said “watch this”  

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When I went to the doctor this friday afternoon.  My foot had almost healed itself!  from a hole in my foot that tracked bone deep, and at least 1 cm wide to practically healed, I was so blown away.  I was honest with my DR and told him EVERYTHING.

The only thing I didn’t do is go in the Ocean while I was there.  I figured that would even be pushing God’s limits a bit!!  But I did go in a hot tub for a few minutes, and wore my foot open most of the time, unless I was going to be in public, then I covered it with a band-aid mostly so it couldn’t be seen.  1b84d57b0877e655165c1978dcb453d8

By the time we got home, my feet were swollen with fluid because of the long flights, I didn’t take fluid pills and my toe was very red indeed.

I knew I needed to rest my foot, keep it propped up and get the swelling down.  I did just that for two solid days, took my fluid pills and proceeded to rest in my way.

I get to the dr on Friday afternoon and as they are cleaning the wound, the nurses are just talking about how good it looked etc, and then Dr. A came in.  He was so surprised! Especially after I told him, I did the less is more option.

Here are just a few of the amazing things God has done.  

1.  The sore no longer tracks to the bone.

2.  It has shrunk.

3.  AMPUTATION IS OFF THE TABLE

4   God, in His almighty, infinite ways, has answered all the prayers for this one ;little toe.

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I had a great vacation, and even though I didn’t walk much thanks to the convenience of a scooter, I did pretty much what I wanted.

and I DANCED WITH MY SON AT HIS WEDDING!!!

(sorry for the crappy picture, but this is the best we have)

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What an amazing gift God gave me in doing so.  I used to pray, God keep me alive till my kids are older, God keep me alive till they graduated High School, etc, etc, and always a new goal.

Now I pray God, I don’t know what you want me to do, but let’s go, I am game!!!  I know God has some amazing plans for me in the future and I am not sure what they are.  I am SO ready to see what He does have in store for me.

and I tell you this, 

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1Thessalonians 5:16-18 16  “Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus”

Thanks for reading this far and remember If he can heal one sore foot, think of what he can do for your heart!!  If you want that same healing in your heart.  

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read this.  God will help you also!

Question: “What is the sinner’s prayer?”

Answer: The sinner’s prayer is a prayer a person prays to God when they understand that they are a sinner and in need of a Savior. Saying a sinner’s prayer will not accomplish anything on its own. A true sinner’s prayer only represents what a person knows, understands, and believes about their sinfulness and need for salvation.

The first aspect of a sinner’s prayer is understanding that we are all sinners. Romans 3:10 proclaims, “As it is written, There is none righteous, no, not one.” The Bible makes it clear that we have all sinned. We are all sinners in need of mercy and forgiveness from God (Titus 3:5-7). Because of our sin, we deserve eternal punishment (Matthew 25:46). The sinner’s prayer is a plea for grace instead of judgment. It is a request for mercy instead of wrath.

The second aspect of a sinner’s prayer is knowing what God has done to remedy our lost and sinful condition. God took on flesh and became a human being in the Person of Jesus Christ (John 1:1,14). Jesus taught us the truth about God and lived a perfectly righteous and sinless life (John 8:46; 2 Corinthians 5:21). Jesus then died on the cross in our place, taking the punishment that we deserve (Romans 5:8). Jesus rose from the dead to prove His victory over sin, death, and hell (Colossians 2:15; 1 Corinthians chapter 15). Because of all of this, we can have our sins forgiven and be promised an eternal home in Heaven – if we will just place our faith in Jesus Christ. All we have to do is believe that He died in our place and rose from the dead (Romans 10:9-10). We can be saved by grace alone, through faith alone, in Jesus Christ alone. Ephesians 2:8 declares, “For it is by grace you have been saved, through faith – and this not from yourselves, it is the gift of God.”

Saying the sinner’s prayer is simply a way of declaring to God that you are relying on Jesus Christ as your Savior. There are no “magical” words that result in salvation. It is only faith in Jesus’ death and resurrection that can save us. If you understand that you are a sinner and in need of salvation through Jesus Christ, here is a sinner’s prayer you can pray to God: “God, I know that I am a sinner. I know that I deserve the consequences of my sin. However, I am trusting in Jesus Christ as my Savior. I believe that His death and resurrection provided for my forgiveness. I trust in Jesus and Jesus alone as my personal Lord and Savior. Thank you Lord, for saving me and forgiving me! Amen!”

Did you pray the sinner’s prayer and truly understand and believe what it teaches?  Please comment below so I can pray for you also!  Start reading your Bible!  If you don’t know where to start, either start at the beginning and read it like a book, or the the Book of James or the Book of Luke.

Thank you so much for taking the time to read my blog and rejoicing with me!

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Patient Advocacy Series: Taking Control of Your Health Care:  Some advice in Being a Responsible Patient

This is the first in a series about Patient Advocacy, taking control of your own healthcare and being an informed patient.  I am not a nurse, or a doctor, I have just been in the medical system since I broke both of my legs at 2 years old.   I have been in an out of so many hospitals for various reasons.  16 corrective leg surgeries from when my legs were broke at age two, 2 back surgeries and the list continues.  Never take my advice for medical care.  My advice is given to you to help you maneuver the healthcare system in today’s day and times.

I make no bones about the fact that I am disabled.  I started getting sick a LOT in 1984 and it continued off and on with several different things, a possibly fatal skin disease, severe blood poisoning, major anxiety and panic attacks, adult onset asthma, prediabetes, gestational diabetes, tachycardia.  I had two major bone grafts during that time from 84 to 91 and then started having major back issues.  I went in and out of care for therapy, injections, testing and more testing that all came to a head in 2001 with me ending up having major open back surgery in Jan of 2001.

 

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At that time, I was pretty much under the assumption that the Dr was always right, and no matter what testing they ordered.  I said okay to.

Then I had the surgery.  I laid 12 days flat on my back because of spinal cord fluid leaking.  I had the most incredible headache I had ever had in my entire life (after a history of migraines)

Add to that a horrendous back pain from lying flat on my back for those 12 days so that no more fluid would leak.  While I had no more back pain from the injured back, I had surgical pain and the pain from just lying flat.

Day 12 they helped me out of bed.  I promise you that day was the day that my entire life changed as far as my healthcare…  I will never forget it.  My dad and sister and children were visiting and they chose “that” time to “make” me get out of bed.

I went through the most incredible pain I have ever felt that day.  As I was getting up, the spinal fluid shifted, and that was all it took.  I felt like my head was going to explode and my back was going to crumble.

I totally loved my doctor, don’t get me wrong.  HE was amazing.  However, I realize I had been there that long and wasn’t getting any better laying there.  Why it had to be that moment, I will never understand.

It literally terrified my dad and my sons.  The scream I screamed, was horrific.  Can you imagine screaming bloody murder because of the intense pain and your dad and children, out in the hallway?

My dad hated hospitals to begin with, getting him there was an act of congress.  I can literally count on one hand the few times he ever came to see me after that in the hospital and there have been LOTS of them.

I got up, I walked what they wanted, I left that hospital the next day and I never again, have taken a direct order from a nurse/doctor/therapist, etc. without question.

Why are we doing this?  Is this something that has to be done now?  What are the side effects?  Why this test?  Why this medication.

I am a very engaged, and very in control of my healthcare, kind of patient.

I don’t have to do every single test, that they ask of me, I do not have to take every medication that they want to prescribe and then, I will choose which Dr. I want to see if a Dr is going to refer me out to someone else.

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So being that kind of patient, takes some work on my part, first.  I do not walk into a Drs Office without a list of medications, my diagnostic history with dates, a surgical history with dates and a list of my entire current care team. (I have a downloadable sample at the bottom of this post)

You MUST be an informed patient also.  I also have a copy of my DNR, my Living Will and a copy of my formulary at the ready.  I use my smart phone for these things (and not “look them up” I mean in a file, ready to go)

If you want to be in control of your healthcare, you must do the legwork.

Every visit I go to, I have all paperwork, I ask for copies of everything and if it’s an apt with a new doctor or we are discussing something extremely serious, I will even video or voice record our conversation.  With the Dr’s knowledge.

The Drs office is the worst place in the world to come up with the questions you want to ask.   I suggest, you open a file on your phone or keep a notepad with you specifically for a Drs visit (I have a journal and a notepad on my phone) and as I think of them between visits, I write them down, or input into my phone.

Now all this being said, I try my best not to be demanding or rude, but I know what I will and will not do.

If a doctor or care team cannot quantify my requests then, maybe I need to find a new care team.

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It’s pretty simple.  Be a patient that knows their own health inside and out and be in control and understand what’s going on, just like you want your care team to be.

I have gone into anaphylactic shock from allergy shots, I have a latex allergy and there are many, many places/hospitals/Drs offices, etc., that while they say they look at your chart, let’s face it,  they may see 30 patients a day or more and frankly, reading everything in your chart is not something they are going to do.  They read the last visit, your allergies (if it pertains to them) and they will read the high points.

So all that being said, here are a few things I do, to be totally in control of my healthcare.

  • The list.  Name, DOB, Allergies, Medications, with Dosages, last filled dates, and why you take them (there are some medications that are not prescribed for their original use), diagnostic history, surgical history and care team with addresses, hospital affiliations and phone numbers/fax numbers.
  • Get a copy of everything you sign and get a copy of the results of each test you have done. Thanks to Electronic Medical Records this is so much easier now.

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  • Be informed. If you are going to a doctor for a specific reason, you need to know what you are going for.  I’m not saying read the PDR on the subject but it doesn’t hurt to know the terminology and/or the things that are important to what you have the appointment for
  • Make a list of questions. Above all, do NOT wait till you get in the office.  You will NOT remember.  There is a real thing called White Coat Syndrome, it makes you forget, makes your BP go up, makes your heart rate go up and puts your entire body into an “alert” state of mind.  No matter how comfortable you are with your doctor.
  • BE HONEST. I cannot stress this enough.  If you drink alcohol or use recreational drugs or even vitamins and OTC meds. Those can and will interfere with some medications and or anesthesia.  It is VITAL that you be honest 100%
  • Keep your appointments or at least have the courtesy to cancel them. Dr’s are busy.  Waiting on a no-show apt, does several things.  It causes the clinic to work when they could have avoided, it delays the office while they are adjusting schedules on the fly and putting your records back where they belong.  It can also keep patients that need your appointment, from getting the care that they need.  It’s a courtesy.  Treat the office the way you want to be treated
  • Above all, if you cannot afford your copays and your percentage of testing etc., the doctor has NO CONTROL over that. Talk to the office staff.  They are your best person to discuss those things with.  Your nurse has no clue how much you owe, or how much your insurance will pay either.
  • If your doctor requires further testing, it is ultimately YOUR responsibility to follow through with your insurance company and make sure all certifications and authorizations are in place. It is also your responsibility to verify that each doctor, therapist, anesthesiologist, etc. are in your network.  Trust me, the hospital will not verify the ancillary staff.  They go with who is on rotation and put you in their rotation.  If you need a certain Dr, therapist, home health care, ancillary facility etc., follow-up and make sure they are in network for your insurance.  You are you best patient advocate.  NEVER assume that someone is going to do it for you

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  • If you cannot afford a test that your doctor orders, as long as it is not elective, there are ways in place to help you pay for it. That doesn’t mean that they pay for it, it only means they help you make it where you can afford it and/or make it where payments are affordable.
  • Deductibles are expensive and it is required to be paid.  It is actually part of the contract your insurance company signs with the facility.  Ask for a payment plan, see if they have a cash percentage to help you pay in cash and/or talk to the financial help staff or patient advocate.  There are ways to get the care you need, when you need it.
  • If you are going through a catastrophic illness, like cancer or a transplant, etc. One of the things I remember our advocate telling us and it was one of the best pieces of advice I ever received.  Do NOT look at your hospital bill, while you are still receiving care.
    1. Because first you aren’t done with your care and you need to be focused on your health.
    2. You never know exactly what your insurance will end up paying
    3. If you don’t have insurance, there is a law, that healthcare facilities are required to treat you as long as what they are treating you for is medically necessary  and life-threatening (that’s two key words you need to remember)
    4. There is that white coat syndrome thing going on again in the background. And it goes back to you needing to focus on your healthcare
    5. When all treatment was over and we walked out of the hospital after my husband had his cancer and transplant and all the treatments etc. We ended up owing $150.00.  The amount of our deductible
  • If you are going to take control of your healthcare, take total control. You are the patient and it’s your body.  Yes the doctor has the degree, but I reiterate, you do not have to say yes to every single blood test, or diagnostic test.  Discuss it with your doctor.  Why?  What will happen if I don’t do it?  Is it medically necessary?  Is it going to make a significant difference in the outcome of my health in the long run?  Is there a test that can be done in place of a certain test that isn’t as expensive?  What are the side effects of this medication?  Is there anything I need to know about this medication, like can I be in the sun, drink milk, eat acidic fruits, does it need to be refrigerated.  Do I need to be sedated, will I need a driver, what are the lasting effects of the medications.  Is there an alternative to the medication like a natural solution etc. (if you believe in using them)
  • Ask the Dr to write the instructions in that journal I talked to you about, or better yet, ask them to repeat it and you write it in your hand writing.
  • Take someone with you.
  • Treat your entire care team the way you want to be treated, from the person that takes out your trash in your hospital room, to the person that takes you out to the car after a stay, your valet attendant, your check in person, the person that takes your blood pressure, etc. You may need something later, and that person might just be the person that can get it for you.
  • Believe in your care team. If you can’t trust them 100% or even any percent, it’s time to find another care team.  If you are in a place that you do need to find another care team, TELL the current one why.  They may have no clue that something is going on in that office/facility that makes you uncomfortable.  Communication is key with everyone.  Writing a letter firing your current provider is a normal thing.  They get it.  They understand it.  Now that being said, remember that if you are a very difficult patient they can do the same!
  • Except for mail in pharmacy(s). Pick one pharmacy (if you have insurance) and use only that pharmacy.  Also, one other thing I do, is I take every RX that I am given, back to my primary care physician and let him re-write it.  I have one Dr writing my RX and one pharmacy filling my scripts, etc for my diabetic and COPD medications because they are a specialty pharmacy(s) for that.  Now if you are a cash patient, it is totally understandable to shop around.  However, even if you have insurance, use the generic scripts at your major retailers.  If you are a cash patient and must use several different pharmacy(s) to get your meds reasonable, be sure and put where you get them filled on your Medical Record that you make at home.  Being up front and honest again, with your doctor about finances when it comes to your care is the only way he can treat you.  If you can’t afford a medication after you leave his/her office and find out the cost is gynormous, call them back and explain.  There are many alternatives to many medications.  Drs are going to try to give you the best, not because they make money, but because they want you to have the best medication for what you need.  That newest medication may or may not be the best also.
  • Never call your doctor and say things, like well it’s in my record, you know what it is, or you know it’s that little blue pill. Trust me, they don’t know.  When you aren’t in front of the doctor and he/she doesn’t have your record in front of them, they don’t know what illnesses you have, what meds you take, what insurance you have etc.  Now some Drs may know a lot of their patients by name and more than likely that is your family practitioners more than anyone but don’t expect them to know you by name, little blue pill, the one with the red hair etc.
  • If you call during clinic hours; know ahead of time, you aren’t going to get to speak to your doctor. They are in clinic seeing many other patients.  You probably won’t even talk to a nurse.  You will get voice mail.  Be specific, leave your full name, date of birth and exactly what you need.  They don’t need your life history.  Just your questions, statements.  Allow them 24-48 hours to get back to you, if it is an emergency, you need to be calling 9-1-1.  Now that being said, if it is a clinical emergency, like something hasn’t been done and you only have a day or so left to get it done paperwork wise or things like that, your best resource in that office is the office manager.  They have the access to the Dr. and the Staff to make things happen.
  •  Don’t get frustrated with staff when they ask you your DOB over and over and over. Sometimes several times in the same visit.  You could not be the only John W Smith in Podunk TX with red hair.  Patience is key.  It is for your own safety that they make sure they have the right patient and the right record in front of them.  In fact, get in the habit of saying, this is John W Smith DOB 1/1/1950.  It will help the Dr’s office out so much.  Also speak clearly, enunciate and be specific.  Usually the person answering your phone call more than likely is in a room with several other people and may not hear you

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  • Do not take no for an answer from your insurance company if they turn you down for a procedure or test or anything that your Dr deems Medically Necessary.  Appeal it, Ask for their Advocate, ask for Corporate.  Someone can say yes if the Dr. says it is a medically necessary procedure.
  • Last and certainly not least, above all, you never have to take no or yes from your insurance/Dr etc. You are the last say.  Granted, your Dr must make the orders, but you can say, no I don’t want that test, and yes I do, and if you are uncertain about something ask, if you want to know more, ask.

Blank Medical Record File  Here is a downloadable file that is like the one I use.  The only thing I do not have on it is my pharmacy listings, but you could make your own space for it.  If you would like one in a PDF format please contact me below

 

Everything that I have stated above is my opinion from my experiences with the health care system in the state of Texas.  I do NOT have any kind of medical license at all.  I will not give you medical advice.  What I am giving you are key guidelines to make your healthcare experience go easy and to help you maneuver the systems.   Above all, please seek your Dr’s care and advice and if you have a life threatening emergency please call 9-1-1

Also my advice is given from the perspective of a person with Medicare.  Although most health insurances work the same way.  Just different ways of getting to the result.  The Insurance Company is there to make money, so approving your procedure is against their bottom dollar.  Go higher than Customer Service if you have to.   Another aspect is that I have not only been a patient for this many years, I have worked in a Family Practice Setting and in hospital/clinical side of things.   I’ve seen both sides and was very

 

Watch for my next posts, on the best smart-phone apps to use to help you in medical care and also medical terminology that may be foreign to you.  If you have questions about either of these, please fill out the contact form and I will do my best to answer them in the next post.

I will publish into this series once a week and you can find it on my blog, on both of my Facebook pages and every social media page that I have!  Here are the links!

https://www.facebook.com/laurahix
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