Category Archives: Peripheral Neuropathy

Confounded Confusion

The problem with having so many health issues is that sometimes you just can’t be sure if a symptom belongs to an existing condition, a new problem, a medication side effect, or a combination. All I know is that I am worried, confused, and I just plain hate not knowing exactly what’s going on with my body.

Let me tell you what’s going on. It’s a long story so I’ll try to just stick to the facts I think are related to the current issue.

foot
Notice discoloration, swelling, and scab.

The problem (symptom) I am stressing so much about is discoloration of a toe and part of the top of my left foot.

Things I think might be related:

arm
A couple hours after original injury

1. This all started on February 1st (2015). I had a severe low that left me unconscious, with memory loss, and falling out of bed at some point. When I came out of it I had a pained, swollen foot and toe with a chunk of skin “scooped” out of the toe and a secondary scrape on that toe as well. I soon began to have a lot of pain, difficulty walking properly, discoloration (redness), and stiffness in the toe and foot. Doctors examined it, x-rays were taken, binding was done on the toe, and I was put on antibiotics as a precaution in case of infection. It was found that I did not have any broken bones so I thought I might have just sprained something. It took nearly two weeks for the swelling, pain, and difficulty walking to go away. Now I still have a scab where the scoop of skin was gone. It was a deep scoop, even though it didn’t bleed much, and a very thick scab formed and is healing slow.

The concerning thing is that the redness is still there. It is at it’s worst (darkest) when I do a lot of standing, physical activity, or sitting at my desk (knees bent, feet on the floor). It is at it’s best (lightest, almost non-existent) when I am laying down or with my legs elevated.

2. Neuropathy.  Back in 2007 I began to experience severe pain in my calves when I did a lot of walking. I also experienced ankle swelling after activity. At the time I was diagnosed with poor circulation.  This diagnosis was done with nothing more than a medical history, list of symptoms, and a quick physical examination. For seven years I believed I had bad circulation. Then in 2014 I had actual tests done, ultrasounds of my heart and legs, and it was found that my circulation is good, well within normal parameters. I was then diagnosed with peripheral neuropathy. This diagnosis was made based on exclusion of circulation problems, medical history, list of symptoms, and a physical examination. I was put on Gabapentin to help ease the symptoms, and told to get my blood sugar under tighter control.

3. Coronary Artery Disease. In 2012 I began to have terrible frequent heartburn. It wouldn’t be until 2013 that I would finally figure out that the heartburn wasn’t that, but heart blockage. I had a triple bypass and everything was honky dory after that. I changed my diet, I tried to get more exercise, I worked endlessly at improving my diabetes control.

It was after the heart surgery that I had the tests done on my heart and legs (and feet) for circulation. Apparently my circulation is just fine.

So, a rundown of my current symptoms:

-Swelling. Of my ankles, feet, and toes. This started back in 2007 but wasn’t a regular occurrence until after my heart surgery in 2013. Now it’s a daily thing and gets worse when I sit in a chair, do physical activity, etc.. It is much less and totally gone when I avoid salt, and keep my legs elevated. Doctors have not given me a definitive reason for the swelling.

– Discoloration. Of the middle toe and part of my foot below it. This is my left foot only, and the part of my foot that got injured back on February 1st (2015). It does not hurt, the only swelling is the “normal” swelling I get anyway, and the only numbness I get is definitely related to neuropathy, there is no stiffness or problems with movement, etc.

Questions:

Is this a symptom of neuropathy? Is it related to the injury? Is there something else going on? Am I in danger of amputation (this is what scares the shit out of me)?

WHAT IS GOING ON?!

I have an appointment with my endo at the end of June. She was one of the doctors to look at the original injury in February, so seeing the continued discoloration might give her more insight. I hope she can give me some answers.

You Don’t Know My Pain

Every now and then I am hit with a world crushing realization.  Chronic pain is virtually invisible to everyone who doesn’t live with it.  They can’t see the pain, they can’t feel it, therefore they don’t realize how very bad and soul draining it is. And they tend to assume the pain sufferer is lazy, unreliable, and a “deadbeat”.

pain

I don’t give a shit about most people understanding my pain.  I live with it, I deal with it, no one else needs to feel for me or understand what I’m going through.  I got this.  But there is one person I do rely on for a shoulder, to understand and be there for me. And he usually is.  It’s those moments when he says or does something that smacks of his lack of understanding the true depth of what I’m going through.  It’s those moments that stab deep through my heart.

He’s good about being there for me.  He’s good about not bringing up the fact that we suffer financially solely because of my health issues (which weighs on me every second of every day).  It costs a lot of money to be diabetic and have so many complications of diabetes.  It’s even harder financially because I haven’t been working because of my many surgeries and recoveries, and chronic pain.  And no, I don’t qualify for assistance or disability, etc. But when the shit hits the fan, even he turns and stares me down and throws his emotional support and understanding out the window.

So today I got it from him.  I stood on my iceberg of tormenting solitude where all chronic pain sufferers are exiled to, and I listened to the one person I need the most tell me to go back to my daily agony so we can pay our bills. I needed to hold him and cry into his loving arms and be comforted, but he was the immediate source of my current pain so I had nowhere to turn.  I was bombarded by truths of why we are drowning financially.  It’s all my fault and I need to do what I need to do.

I know he’s stressed out.  He feels like he’s failing at supporting us.  He feels like he’s drowning so he’s grasping at any hope and help he can find. He tried so hard not to hurt me with his words, but how do you not hurt someone when you’re telling them the truth?  You need to go back to work, anywhere, even if it means pain all day, everyday. YOU’RE why we’re in this hole, YOU need to help get us out.

I’ve been trying to find a job that wont require me to be in excruciating pain all day, but there’s just nothing out there right now.  I have been working on my overall, diabetic, and nerve health and using many methods to help the pain, and making great progress, but the pain may never go completely away.  That’s just medical fact.

pain2

I have a high tolerance for pain. But even the highest tolerance will get worn down over time.

Don’t misunderstand me here, I have no problem doing what I need to do to keep us afloat.  I’d go through hell and all the pain in the world to do my part. I’ll take any job to pay the bills right now.

It’s not the pain itself…it’s feeling alone in my suffering that really hurts.

2014

Another year gone by and what have I done?  As far as accomplishments, I suppose I’m not too disappointed in myself.  I could have done a lot more, though; especially health wise.  As far as things that have happened to me, we’ll talk about that.  The year as a whole, not too shabby if I do say so myself.

2014 rundown:

January: I started the year out still pretty fresh from open heart surgery, but I was feeling pretty good by this point, if not just a bit weak and easily worn out.  I had to go in and renew my driver license and was required to take the written exam and eye exam.  I passed the written exam with no trouble, didn’t get 100% but didn’t fail. Went over to do the eye exam and they first had me read the chart with both eyes open.  No problem, this test is easy peasy…the letters on the chart are so damned big, who could fail?  Then with just my left eye open; again, no problem. Then with just my right eye open.  Um, I can’t make out any letters, they’re all blotchy and twisted and blurry.

Needless to say, they refused to renew my license until I had an eye exam and had the doctor fill out a special form stating I can see well enough to drive.  No problem, I’ll just go get that exam, get my right eye fixed up…probably just need a new prescription for my glasses.  Let’s just ignore the fact that I know exactly what is wrong and that I need surgery and may never get my license back again…

On January 8th, my good friends Kim and Jon had their second child, Dean.  It was a happy day.

January 16th, first day back to work after heart surgery

January 2014’s best quote – “Everybody has one thing they are really good at naturally; my talent is self destruction. I’m better at it than anyone I know.” – Me

February – On February 5th I saw an ophthalmologist.  My eyes were obviously in bad shape and I was asked to return the following week to see a retina specialist.I returned a week later and was given a very full and somewhat invasive exam on both eyes.  I met my retina specialist for the first time and immediately liked him and was very impressed by his knowledge, compassion, and gentle nature. I was told I needed surgery immediately on my right eye to reattach my retina and clean up the scar tissue and mess caused by years of diabetic retinopathy.  My left eye would need laser treatments. I had the first surgery on my right eye the following week. I had several eye and regular doctor appointments this month as with most months this year.

A few days after eye surgery

February 2014’s best quote –  Me- “What were you trying to type?”

  Lee- “I was trying to type “giggity” and my phone changed it to “Yoghurt”. So I was like, I’m done for the night…”

March –  March started out to be a fun month.  I was still under doctor’s orders to not look up.  My right eye was still healing from the surgery and I still had a gas bubble in it and had to keep my eyes to the ground at all times lest I damage my eye from pressure in the wrong spot.

On March 11th I had the second surgery on my right eye.  This time was to stop a hemorrhage that wouldn’t stop on its own.

We got a new puppy and I named her Agape (ah-gah-pay).

The weekend of the 29th we took a trip to Paso Robles to visit family. It was a nice relaxing but too short trip.

March 2014 best quote: Lee – “Do you still love your new puppy?”
Me: “Yes.”
Lee: “What did you and puppy do today?”
Me: “She kept chewing on things and I kept yelling at her.”

April –  April was a quiet month.  I worked. I had several doctor appointments but they were all routine. I had a few severely low blood sugar’s, and few highs, but tried hard to stay in line.

April 2014 best quote:  Me – “Samuel L. Jackson, The L stands for “Fuckin’. ”

May – May was a quiet month.  I did spend my husband’s birthday party sick in bed with food poisoning. Never did figure out what caused it.

May 2014 best quote:  Me – To Lee after he farted. “You’re a horrible human being.”
Lee – “I’m an even worse zebra.”

Me – “….”

June –  I spent a lot of time in June thinking about how I’ll probably not live to old age.  I was depressed this month, I think because of all the surgeries and healing time and the fact that I had such a hard time getting and keeping my blood sugars in the normal range.

On June 10th  I had my third eye surgery.  This one was to put on a scleral buckle and put in another gas bubble as well as to clean up a bit more inside my eye.  This surgery was very painful during and after.

Two days after third surgery

June best quote:
My phone needs to learn that I don’t need auto-correct…I just have a dirty mouth:
Me: Texting Lee – “Hippy needs to learn to stfu, she’s driving me insane.”
Lee- “When did we get Hippies?”
ME- “Guppy….how do u turn off this ducking autocorrect?”

Lee – “Hahaha.”

July –  July started out with a nice gathering of friends for Independence Day. And then several other days of hanging out with friends.

Then I got an infection on the back of my thigh.  I would end up dealing with this very bad staph infection for three months before it finally healed leaving a scar.

This month I finally went to the DMV to get an ID.  It took this long for me to admit I probably will never have a driver license again.

July 26th, eye still healing from surgery 3

July best quote –  *watching T.V.*
Lee- “Look there’s Sean Bean.”
Me: “Is it a new movie?”
Lee – “No, it’s a new T.V. show.”
Me: “Well that’s going to be a short-lived show.”

*Ba Dum, Tiss*

August –  On the 12th of August I had eye surgery number 4.  This time was to clean out the hyphema (collection of blood) at the front of my eye as well as to have an artificial lens put in.

At the end of the month I spent a few days with my mom and other family members.  Good times.

My cat comforting me the day after surgery.

August best quote -Me – “I’m gonna start working out again, you know, get that sexy body I never actually ever had but know it’s in there somewhere.”
Lee- “Just like there’s a skinny guy somewhere inside Lee?”
Me- “There’s no skinny guy inside you, you were born chubby, you’re meant to be chubby.”
Lee – “Thanks…”
Me- “You can lose weight, just don’t get skinny. Just like I can lose weight but not lose my curves.”
Lee- “If you lost your curves I’d divorce you.”
Me – “If you got skinny I’d divorce you.”
Lee- “agreed.”
Me – “Good, we’re on the same page.”

September –  September was a quiet month, not a whole lot happened that is worth talking about.  I spent a lot of time at doctor appointments and continuing to heal from eye surgery. I was officially diagnosed with peripheral neuropathy.

September 12th, eye still healing

September best quote: Me – “Lee, we’ve been married long enough, I think I know what your butt sounds like.”

October –  In October we went to the Fresno Fair.  It was a nice day with a lot of walking.  We spent little money and tired ourselves out going area to area and looking at the exhibits.  It is a tradition of ours to just go and wander the fair once every year.

Mid October I began reading and studying Dr. Bernstein’s Diabetes Solution.  I fond it extremely interesting, educational, and helpful. I began to implement his teachings into my lifestyle and have been growing more and more healthy as a result.

Toward the end of October we went to our friend’s annual Halloween party.  It was a lot of fun as it is every year.  Everyone who came in costume did a wonderful job showing their artistic side.

Halloween

October best quote – Luke – “I sucked eight inch dick to pay for this game and the servers are down?!”

November – On November 15th we moved from Selma to Kingsburg.  We went from a room-mating situation to living just myself and my husband, and our cat.  We are renting a place with no yard and no pets (except our cat) allowed, so we had to find homes for our three dogs.  Although we were able to find very good homes for them, it was a heartbreaking thing to do.

This month I found out my retina specialist that has handled all my care and surgeries over the past months is no longer with the group I am a patient of.  I was worried at first because he is an absolutely brilliant doctor and now I  have no idea how well my ongoing care will be handled.  I am, so far, satisfied with my new specialist.  But no one can ever live up to the great Dr. Hunter.

Thanksgiving was a wonderful two days spent with family and eating way too much.

Thanksgiving day

November best quote –
Me: “Do you want to be that 100 year old couple holding hands walking down the street?”
Lee: “Yes, I want to live to see cyborgs.”

Me: “Oh, yeah, it has nothing to do with loving your wife…”

December –  December began with my friend, Kim’s, birthday party.  It was a fun evening full of friends, contests, and a gift exchange.

Christmas was a fun filled two days with family.  Always love to just lounge around and visit.

New Year’s Eve was spent with a small group of friends, just the way we wanted it.

December best quote – Me: “I am the most self-destructive person I know.”

 So what is my New Year resolution?  To continue to improve my health, writing, and overall quality of life. And hopefully have a more exciting (in a good way) year than 2014 was.

What Have I Done?!

This was originally posted to my old blog on September 30, 2014

It was a difficult decision.  I spent a day and a half thinking of little more than this topic.  I weighed my options, made a list of pros and cons.  In the end I decided to leave my job.

Why?  There are two main reasons:

1. My health is in very poor condition right now.  I am almost completely blind in my right eye and my left eye is not perfect.  I have neuropathy that puts me in excruciating pain whenever I am active and my job is very active, so the entire time I am there (8 hour shifts), I am fighting the need to burst into tears and just plop on the floor and not move.  Up until the diagnosis of neuropathy I had thought the pain was being caused by something much more treatable, so the thought of an end in sight was what was keeping me going and able to deal with the pain.  Now I know the prospect of a “cure” for the pain is minimal and if I do find relief, it won’t be any time soon enough, so the thought of going to work right now is outright misery.  I have many other health issues as well (heart disease, Type I diabetes, frozen shoulder…).  I also have at least one doctor appointment per week.  So work is not just agony but I miss a lot as well for doctor appointments, medical leave to recover from surgeries, etc.  I decided that it wasn’t fair to my employer, as well as destructive to my health and well-being, to stay.

2. I have limited transportation.  We only have one car and my husband uses it.  I can’t drive right now anyway because of my poor eyesight.  My work is in the next town over so there is absolutely no way I can walk there.  I can’t walk a quarter of a block without powerful pain anyway.  I used to have several friends who could and did give me rides to work, but in the last six months or so they all have had drastic changes in availability, so now I have very limited help with rides. I prefer having several people to go to so I am not inconveniencing one person by asking them for rides everyday. But beggars can’t be choosers. There is public transportation in my town but it is very unreliable and I learned a long time ago that it can’t be trusted.

So these and other lesser reasons are why I called my work today and said goodbye.

By no means is this a good thing and here’s why:

1. We need the money.  We have bills to pay just like everyone else, and money is even tighter now because one of our roommates is moving out.  If we don’t find a new roommate soon, and/or I get a new job, things are gonna get bad fast.

2. I like working for the most part. I have always enjoyed being self sufficient, independent, busy, and having money to pay bills and have fun with.  I’ve always felt the need and desire to pull my own weight, pay my portion, and not be a burden or mooch.

I am already looking for new work close to home so I can walk a short distance (or ride a bike) and not have to worry if I can’t find a ride.  If I can find a job close to home and that doesn’t require a lot of running around, then that would be ideal. The idea is to not experience much pain, and to not have to worry about how I’m getting to work and back.

Here’s to hoping everything works out.

I’m Crying Right Now

This was originally posted to my old blog on September 29,2014

It is interesting how you can live for so long believing something because a professional told you it was so.  Since 2007, I have believed that I had poor circulation in my legs because a doctor diagnosed it as such.  Today I found out that the circulation in both legs is “normal”.  But that is just the good news before the devastating…

I have lived since 2007 with excruciating pain in both legs whenever I do any physical activity.  After I was diagnosed with poor circulation that year, I lost my health insurance.  When I got health insurance again in 2013 I began a journey of getting all my health issues fixed.  Type I diabetes + no health insurance = bad complications, and a lot of them.

It took several months and changing my primary doctor before I could get the leg pain issue looked at.  Two weeks ago I had an ultrasound done on both my legs to check for circulation issues.  Today I had an appointment to get those results.

The doctor told me that the results show that the circulation in both legs is normal.

“So this means all of my pain is from neuropathy?”

“Yes.”

“I’m shocked.”

“Why?”

“Because all these years I thought it was poor circulation.  And also, because now there is no hope that the pain will go away.”

“I’m sorry, but there is not much that can be done about this pain.  The Gabapentin should help a little, but it won’t help all of the pain.  And keeping your blood-sugars under control and eating healthy is very important.”

I almost started crying right there in front of him. “The pain is excruciating, and I have to walk so much.  I walk all over town, I have to walk all day at work, I try to exercise for good health.”  I looked up at him.  “I cry everyday because of the pain, and now I know there’s nothing I can ever do about it.”

“I’m sorry.  But the good circulation is a very good sign.”  He tried futilely to cheer me up.

This Leg of My Journey

This was originally posted to my old blog on September 16, 2014

We all live one life; but in this one life is sprouted many journeys. Many different paths that we travel all at once. Allow me to tell you the story of one such journey in my life.

I suppose it all started when I was nine years old.  It was Easter and I was enjoying all the spoils of my Easter basket, like any chocoholic child, I was in heaven. I had fallen asleep on the couch and was woken up by my parents futilely trying to check my blood-sugar without waking me up.  You see, my father was a type I diabetic and as of late both my parents had noticed key symptoms in me. I had been moody, sleeping a lot, drinking tons of water, losing weight, etc.. So, now I wake to my parents trying to prick my finger. I struggle and cry, afraid of a tiny little lancet.

My parents won that little scrimmage and found my sugar very high ( back then there were no numbers, just a color chart). After a couple of doctor visits and lab tests, I was diagnosed with type I diabetes…and never got to finish my Easter candy.

Me, a little over 6 months after diagnosis.
My dad taught me how to check my blood-sugar and take my shots, and how to live healthy with diabetes. He knew this was going to be a life-long journey for me so he refused to do it for me. He wanted me to be strong and independent.  I’ve always loved and thanked him for that.  The only problem was me..I didn’t want to be a diabetic.  I rebelled.
So the years passed and I continued to rebel. I never once did as I was taught, I never once did as my parents begged of me.  I never once took my doctor’s warnings to heart. Boy was I in for it.
The time came when it all caught up with me. I was twenty-eight and was hired on at the Fresno Chaffee Zoological Gardens.  I was stoked. This was a dream job for me. It involved a ton of walking and physical labor. I was just fine with that, I loved moving and using my body. It was outdoors and I got to work with wild animals! So cool!

Within a couple of days I started to experience excruciating pain in my calves. I thought I was just out of shape and needed to wait it out and it would go away.  It didn’t, it got progressively worse and every evening my ankles would swell up.

After a month of terrific pain, I finally went to the doctor.  I was examined and informed that I had poor circulation.  I was also informed quite bluntly by this doctor that if I didn’t straighten up and get my numbers under control, I’d lose mt legs by time I was forty. Thanks, Mrs. Obvious, I really needed that pep talk right now. She prescribed a medication and told me it could take months before I saw any improvement.

I ended up quiting my dream job because the pain was unbearable and there was no end in sight. About this time I also lost my health insurance, so I never took the medication because I was told once I was on it, I had to step down gradually to get off it. I knew I wouldn’t be able to do this without a doctors guidance.

For the next seven years I lived with no insurance.  I lived with this terrible, worsening pain and swelling.  I developed new symptoms like numbness in my toes, and burning on the pads of my feet and mild discoloration of the skin on my lower extremities (like being sunburned).  But with no insurance, there was no help.

In June of 2013 I finally got insurance again and immediately went to the doctor.  At this time in my life I was more concerned with my chronic chest pain than with my leg pain.  Over the next year I would deal with heart surgery and eye surgery and wait rather impatiently to deal with the leg pain. I did, however, at every opportunity, tell my doctors about the pain only to have the issue put aside once more.

Finally the pain became so unbearable that I said “no more!”. I have to walk a lot these days. I have no driver license due to eye issues so I have to walk a lot of places. I also have to walk a lot at work, and I try to get as much exercise as I can for overall health.  So I pushed the issue with a new doctor. This doctor listened and took my pain seriously.  He ordered an ultrasound of my legs and put me on a medication to lessen the pain.

According to this doctor I probably have a combination of neuropathy and claudication. We’ll see how the medication works out, and what the ultrasound reveals.

This particular journey of mine is just beginning.  Hopefully it ends pain free and with my legs still a part of my body.

Neuropathy, Claudication, or both?

This was originally posted to my old blog on September 15, 2014

Today I went in to see my primary doctor.  The official reason was to follow up on an infected bug bite I’ve been dealing with since July 3rd.  The real reason I was there was to push the issue of terrible leg pain that I’ve been trying to have addressed for a long time.

The doctor came in and asked how I’ve been doing.  “Oh, alright, I’m OK.”

“Not too good?  Could be better?”

“Well, I have an issue I need addressed and I’d like to discuss with you.”

“”Well, let’s hear it.”

I told him all about my leg pain.  That it had started in 2007 and I saw my primary at the time about it and she had told me it was poor circulation and prescribed a medication.

“I can’t remember what it was called, it started with a T.  But I never took it because I lost my insurance right after that visit.”

I told him I had gone without insurance up until 2013 and when I got to see a doctor again the concern was now all about my heart and not my legs.  I went on to explain my heart surgery and that after that I had told my cardiologist about the leg pain on three separate occasions but no one will address the issue.  I told this doctor today that I am in terrible pain whenever I do any walking, but I walk anyway.  A lot.

“And does the pain get any better the more you are exercising?  Or is it getting worse?”

“I am in agony.”

He asked what the pain feels like and where exactly it is  at.  I explained that it starts in my calves and the more I walk the more it hurts.  It feels like the muscle is trying to rip itself away from the bone.  and the more exercise I do the more it hurts and spreads up the back of my thighs and down the sides of my ankles.  Eventually I get numbness in my toes and around my thighs.  Sometimes my fingers go numb, too.  I also pointed out that from my mid shin down, my lower extremities are beginning to look kind of sun-kissed. Oh, and of course I mentioned the ankle, foot, and toe swelling.

“OK, OK.  We need to take into consideration that you’re type I and also that you have heart trouble, even if these symptoms started before your chest pain.”  He went on to explain that this could be one of two problems, or a mixture of both, neuropathy and/or claudication.

The doctor prescribed a medication called Gabapentin for neuropathy.  It should help the pain if the pain is caused from neuropathy.  I am to take one pill every evening for two weeks, and then can increase to two a day if needed.  He also set up an appointment for an ultrasound of both my legs to see if there is any narrowing or clogging of my arteries and veins in my legs (claudication).

I am to go back for a follow-up with him on the 29th to discuss if the medication is helping and also to go over the results of the ultrasound.

I am so glad I am finally having this pain issue taken seriously!  I hope I can be pain free soon…or at least have much less pain in the near future!

After the discussion about my leg pain, he asked about the infection.  I showed him the scab and we both agreed it is finally healing up quite well and needs no further medical attention.

And then, after all this discussion of pain during activity, I walked 2.5 miles home.  It hurt.  I stopped and sat down twice to rest my screaming legs.  Of course this only gives me immediate relief and the pain starts up again as soon as I start walking.  The first stop was more to sit and rest while I drank a Hansen’s to bring up my rapidly dropping blood-sugar.  My shoe for some reason didn’t want to stay tied and I had to stop and tie it twice as well.

I made it home in one painful piece.  It took me one hour and fifteen minutes to walk two and a half miles.  I think that is good considering my poor health.  Maybe in a year I’ll be able to jog it in no time flat without even breaking a sweat!  Yeah, right.