Saturday, August 4, 2007

My Story

Originally published August 4, 2007
I grew up in the generation of fast foods just forming, and the days of home cooked meals. Boy I do miss both of those, but especially my Mom’s cooking.

As a child I remember always wanting to eat cookies. I remember struggling with my weight continually. I was luckily a tall kid so I wasn’t to chunky; however, chunky was still a problem.

Back then doctors came to your house for visits. They weren’t so busy like today. They took the time needed to really look you over and try to diagnose your problem. Today we don’t have this in our society. Yes, we have come so much farther in the medical field, but we’ve also moved farther away from helping the patient.

I believe if the medical doctor that was seeing me in the 90’s took his time and really listened to me, I wouldn’t be sitting here with Diabetes Neuropathy, Hypo-Thyroid disease and High Blood Pressure at age 38.

It is not his fault I became a diabetic, but it was his fault for the pain and suffering I’ve endured over the years.

Doctors today don’t have time to sit with their patients when they come in to see them. If you don’t make them listen to you, they will give you a shot or a prescription and run out of the room. You need to make them listen, be prepared before going into the office know how YOU FEEL and make sure they understand it before leaving.

I am a computer programmer and I know at the beginning of the project the client expects me to understand exactly what they are wanting; but I don’t. If I did what doctors do today and spend only 5 minutes with my customer, they wouldn’t get what they are asking for in the end product. Frankly, I couldn’t program something after only spending 5 minutes with the customer. I have to really dig deep and ask questions that they wouldn’t think to ask. I have to understand not only what they want, but also how this project will affect their entire system.

A doctor shouldn’t be any different really, for heaven sake he’s got to figure out based off the little information we give them and try to diagnose us. Do you know how hard that has to be? Unfortunately, as a programmer I am able to have “trial and error”, but a doctor doesn’t have that luxury. If they prescribe the wrong thing, it could be detrimental to the patient.

Before knowing I was a diabetic, in my early 20’s I got sick a lot. I went to the doctors what seemed like every month. He could never “find” anything.

Well, it wasn’t until I played my hand at running when I turned 30 when I felt miserable all the time. I remember having to take naps during my lunch hour at the park to be able to make it through the day. I came home telling my husband “I feel like I have poison running through my veins”. What I didn’t know was I really did have poison running through my veins. That is what high sugar in your blood system is to your body.

My feet throbbed when I came home from running, I could barely walk on them. I just figured at the time it was from the running. I mean I was 80 pounds over weight, that’s a lot of pounding on one's feet.

Well, after about a year they were so bad I could no longer walk without help. We had to sell our home that was two stories because I could no longer go up and down the steps due to the pain. I, of course, gave up running but continued to eat the way I always had.

During this time, the doctor thought it was a sports injury so he sent me first to a podiatrist. The podiatrist said I needed insoles and a shot of cortisone, so I paid my $500 for the insoles and got the shot. If anything, my feet hurt worse when having to wear those insoles. However, I kept trying with them.

I mean they’ve got to help since the doctor told me I needed them right? Well, after 2 weeks of pure pain I went back to the podiatrist and told him this is not helping! He then decided it was all in my head and there’s a disease out now that’s called “Reflex Sympathetic Dystrophy”. He took blood work thinking it could be gout, but he never thought once it was Diabetes Neuropathy and neither did I. I didn’t even know what that was at the time. I was just dependent upon the doctors telling me what it “might” be.

The treatment for RSD was simple. You were to tell yourself it's all in your head and to force yourself to walk on it. I tried and tried, but I couldn’t take the pain anymore. I was walking on the side of my feet and now using a wheel chair at work. I sat on my sink in the bathroom sticking my feet in cold water crying because my feet were on fire. I couldn’t understand why I wasn’t getting any help.

The podiatrist then sent me to a physical therapist to make me exercise those feet since they are being atrophied by the RSD. I explained to the therapist everything that has happened up to this point. He started me on stretching and balance exercises. Oh wow, that hurt. I kept telling myself, keep this up it might help. You can deal with the pain, if your body is really telling you not to use it we have to fight it. Right? Wrong! After about 3 weeks, I told the therapist this isn’t working; however, at the end of our sessions he’d put these electrical things on my feet that really helped. He recommended that I purchase this for home use or at work, it was called a TENS unit.

The definition of "TENS" is the acronym for Transcutaneous Electrical Nerve Stimulation. A "TENS unit" is a pocket size, portable, battery-operated device that sends electrical impulses to certain parts of the body to block pain signals.

I kept telling the podiatrist, my feet are on fire and when I touch them I feel strange “electric current” going through that area. At that point, he sent me to a Neurologist at a hospital in the “chronic pain” ward.

I explained my last 3 months to him and told him that the podiatrist thinks it is RSD. He immediately said “No, you don’t have RSD”. Your foot doesn’t have the major symptoms. He put me on “Neurontin” and sent me away for 2 weeks. That did helped calm down the electric and burning, but not the pain. I was starting to get hopeful.

I came back after 2 weeks and told him that it was helping somewhat, but it was still so bad especially at night. I said to him, "are you sure this isn’t RSD?" I did have some of the symptoms, burning pain, extreme sensitivity to touch, skin color changes, and extreme temperature changes. He still held on to his opinion, I did not have RSD, but he explained a little more what RSD is and what it affects and that is the Sympathetic Nervous system.

In our bodies, I don’t know why exactly they called it this, but the way it was explained to me is when your body thinks you’ve injured a joint this sympathetic nervous system takes over and causes more pain to that area so you do not use it. It is truly a double edge sword, if you don’t use it your joint will atrophy or you use it and you are in a lot of pain.

One of the treatments for RSD is to inject some Lidocaine into the sympathetic nervous system, so it calms down. So, of course, I wanted to do this “spinal block” if it might help me. They put a 12 inch needle into your nerve root of your spine and inject this medication. Yes, you guessed it wasn’t pleasant.

This doctor did this procedure in his office, no surgical facility. My husband was in the room with me while he was measuring between 2 points on my back. He would put dots where he needed to insert this 12 needle.

He gave me a lot of shots in that area to help deaden the pain of the big needle. It wasn’t enough, I could feel it going into my back and I flinched. NOT GOOD, so he stopped and let me lay there for 15 minutes with this needle halfway in my back and put me on an IV.

He filled me up with some sort of pain medication I didn’t care what it was, I just didn’t want to feel that pain again. Afterwards, my husband looked at me and said, "I can’t believe what you just went through". He was so supportive during this time, I needed that support. He understood what kind of pain I was going through, and he did what ever he could to make my life as easy as it can be.

Needless to say, the only thing it did was help warm up my foot which at the time was nice because they’d get so cold.

The Neurologist said he could keep giving me these spinal blocks or I’m going to have to go to an Orthopedic Surgeon because he couldn’t help me. So, of course, I chose the Orthopedic Surgeon route.

The Orthopedic Surgeon was really nice he really tried to solve my issues. He X-rayed my feet and though he at first saw nothing, but based off where I was telling him the pain was residing he had found what possibly could be a slight fracture in my sesamoid bone. He put me in a cast for 5 weeks and gave me a wooden shoe to wear on my right foot as well.

I thought I was going to go nuts at night with this cast on. The burning, the creepy crawly feeling of ants all over my foot the intermittent pain was horrible and I had no way of rubbing my foot!

I didn’t go into work, but my boss was the best boss ever he allowed me to continue working from home. I felt so guilty for not being there, but I just couldn’t.

After the cast came off and I reported no change, the surgeon decided to do a MRI on my feet. Nothing came back. They couldn’t see anything wrong with me.

After 3 months or so with him, he decided to send me to one of his colleagues that was known to solve most issues. He was also an Orthopedic Surgeon, so I wasn’t hopeful.

At this point I wasn’t holding my breath and nor was I amused. I started doing my own research on the internet during this time. Based off what my search was of my symptoms, the results that came back almost each time was peripheral neuropathy. I immediately printed out this article and brought it with me. I just knew this was it, this was my answer! He didn’t know anything about that and said I should ask this other surgeon. I couldn’t believe it, I finally knew in my heart what it was I was suffering from and now you tell me I have to see another surgeon?

Well, to prepare for my next visit, I wrote out each step of this endless phase of my life. It had been 8 months of trial and error to multiple doctors and tests and still nothing. I wanted to make sure this doctor understood exactly how I was feeling and what I believed I was suffering from.

When I finally got in to see him, I was prepared and ready to get some real answers. I had an entire page of what I’ve been through and what I think it is and he looked at me and said “I can’t help you Sheri”. I almost cried, I looked at my husband with tears in my eyes, but then he said he wants me to see this Neurologist who specializes in chronic pain and he can solve just about anything. Oh boy, here we go again.

Well, as I was waiting for my appointment to arrive to see this next Neurologist. I kept researching how I felt the poison in my veins, extreme fatigue, dry mouth and the pain in my feet. During my research, I kept coming across Peripheral Neuropathy and in there said “diabetes”. My first thought was, "No way, I do not have diabetes". How could I?

Well, the more and more I learned about it and the symptoms I had, I made the call to my GP (general practitioner) and said I want to be tested for diabetes.

The end result was, I am diabetic! And, guess what, folks! I figured it out; not any of the doctors had a clue. The internet provides us with a wealth of medical information we just have to work at finding it. Our parents never had the ability to look up on the Internet and search for diabetes. They had to rely on their doctors to tell them.

What was funny was before I got the results back, I had my appointment with the Neurologists and on my first meeting with him he looked at me and said “Do you have diabetes?” WHAT! Are you kidding me? This is the first doctor in 8 months of researching and being poked and prodded that any doctor thought it was diabetes. I told him that I am waiting on the results.

He scheduled me for an EMG, Electromyography involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study. This told the Neurologist if my Peripheral Neuropathy was caused by Diabetes. The result was, yes mine was caused by uncontrolled diabetes.

Well, once all of this came to the surface I took action immediately. I took my medical records and left my GP and found someone who takes the time to research and help me. After that, I went to a Endocrinologist (someone who is specially trained doctor in diseases that affect your glands).

The first diagnosis of diabetes from my prior GP was I had Type 2 diabetes. Well, that isn’t always true. Some doctors just say "Oh, its type 2 because your over weight", or because you’re an adult. When I went to the Endocrinolgist, I told him that my sugar isn’t under control no matter how hard I try. I lost 35 pounds in 3 months and did very little exercise because of the pain in my feet.

Well, the specialist tested my antibodies and found that I am a Type 1 diabetic as well as Type 2. I said the same thing, "How can a person have both?"

He said it isn’t so rare anymore, to have Insulin Resistance (Type 2) and Adult Onset of (Type 1). Well, leave it to me to have both, I wouldn’t expect any less.

Once I started taking insulin, I noticed the sugar control was getting better and I started feeling better. The pain in my feet was still horrific, but I was on my way to getting myself better.

It is very important for you to know your numbers as a diabetic. I took my blood sugar up to 10 times a day and wrote the results in a journal, so my doctor had enough information to be able to help me best. My A1C at the time I found out was 14 it took me 3 months with diet and oral medication to get it down to 7.1; that was still too high according to the ADA (American Diabetes Association).

I told my Endocrinologist that I still didn’t like my numbers, they were way too high in the morning and after I ate. The doctor took some blood work to see if I was Type 1, and the results came back that I had antibodies attacking my Pancreas which means I am. I started taking insulin shots and learning how to calculate carbohydrates by ratios. It was all terribly confusing, but I got it after a few days. Although I started insulin, my blood sugar would still spike really bad throughout the day and in the morning even though I hadn’t eaten. I wasn’t happy about this, so I continued researching. During my time researching, I found Insulin Pumps and how they work like a pancreas. I wanted it! When I saw my doctor the next time, I gave him my journal and showed him my numbers. He agreed, they shouldn’t be so high and with my Neuropathy we needed to get these numbers lower.

My doctor prescribed the pump and I bought it. At the time, we weren’t in a position to afford the pump, so my parents helped us out. Thanks Mom and Dad! I had to go to a class to learn about the pump and what to expect. Once I received the pump, a nurse was assigned to me and taught me how to use it and then worked with me until I could do it on my own. I highly recommend a pump for any Type 1 diabetic. It is so much easier.

After starting on the pump, my sugar stayed down more; however, it took a lot of work on my part to get it more consistent. Just because you get an insulin pump, doesn’t mean you don’t work at being a diabetic anymore. You still have to work hard through watching your blood sugar and adjusting your ratios and correction levels.

When I exercise, I don’t wear my pump. My blood sugar drops pretty quickly once I start moving. I have to keep a small can of coke in my purse for emergencies. The worst thing about having a pump is wearing it all day and night. After awhile I, learned to adjust and realize its there to help me.