I am 35 with the spine of a 60 year old

I have mentioned before that I suffer from Degenerative Disc Disease, it is what causes the largest part of problems for me. There was more to that the day of which I found out I needed neck surgery two years ago. I had been complaining of severe pain in my neck including numbness, loss of grip, shooting pain, sharp & dull pain. It made everything difficult, this was made worse by the fact that I was getting pinched nerves often. Not just one that muscle relaxers could help but they would last for weeks. It also felt as if the pain never went away except the sharpest even when I could move head again. Finally I found a doctor that was listening to my complaint about how bad it felt, how often I was having pinched nerves. He still seemed a little skeptical but he sent me for an MRI anyway just to rule out things. I think he thought I was some drug abuser.  because I had asked him what I could do about pain and muscle relaxers. I make sure that he knew I would go without if he found nothing on MRI he decided to schedule one.

The MRI was set, the day I arrived just little nervous even being somewhat excited to find out what was happening to cause me such pain. It was making problems for me to find and keep a job being as I missed so many days of work. The great thing is the facility I went to was able to play music while the test was being run. Lucky I had doctors that communicate well they actually got me in to have knee, for another day, and neck done on same day including time slot. Waiting was hard just not knowing what they would find. Early one morning the phone rang, they had news  we scheduled an appoinment for two days later. While waiting with my SO the tension grew, as if you could cut the air with a knife.  Dr. entered the room there was some bad news that was no surprise. Not only did I find out that I had DDD but part of a vertebra had broken off and was cutting into my brain stem and spinal cord. Know we knew what was causing the issues the question is what happened. There was one answer I automatically thought of football (soccer). I had taken a hard tackle that had landed me square in my neck and top of shoulders. At this time I was informed that I needed surgery before Christmas, this was only a few days away from Thanksgiving. There wasn’t an open slot so we had it scheduled for after, given the instructions to not do anything physically active so as to lessen the risk of causing more damage. Surgery was preformed that following January it went by well, it was hard to sleep in that collar you do get used to it. I have since fully recovered although I did have to give up all sports and my horses or chance another injury. It is a long journey to work your way back into life it is taken one day at a time. Learning how to have patience you cannot rush healing.

How does it feel to have Degenerative Disc Disease? Any move can cause me to have pinched nerves. From just in the neck to the lumbar making it feel as if someone is sending bolts of lightening down my legs. If you have ever been shocked imagine that but starting in the hip going down through thigh down to toes. At times my back can feel as if it is a vice, with a burning pain that is sharp like a fireplace poker. One the worse days I have been stuck in bed all day, not able to even get up for the simplest things like food or bathroom. Those times I have to move very gently with the wrong movement things can get worse. So I have talked a little about how it affects me. Now I will allow https://www.cedars-sinai.org/health-library/diseases-and-conditions/d/degenerative-disc-disease.html to explain the science side of it.

Degenerative disc disease refers to symptoms of back r neck pain caused by wear-and-tear on a spinal disc. In some cases, degenerative disc disease also causes weakness, numbness, and hot, shooting pains in the arms or legs (radicular pain). Degenerative disc disease typically consists of a low-level chronic pain with intermittent episodes of more severe pain.

What causes degenerative disc disease?

Several factors can cause discs to degenerate, including age. Specific factors include:

  • The drying out of the disc. When we are born, the disc is about 80 percent water. As we age, the disc dries out and doesn’t absorb shocks as well.
  • Daily activities and sports, which cause tears in the outer core of the disc. By age 60, most people have some degree of disc degeneration. Not everyone at that age has back pain, however.
  • Injuries, which can cause swelling, soreness and instability. This can result in low back pain.

What are the symptoms of degenerative disc disease?

Degenerative disc disease X-ray

The X-ray shows degenerated discs on the left before surgery. On the right is an X-ray of the discs after traditional spinal fusion surgery.

The typical person with degenerative disc disease is active, otherwise healthy and in his or her 30s or 40s. Mine is different in the progression is faster. I already have had two disc replaced, though we have three in lumbar and two in neck that are already being talked about for surgery. The lumbar disc have severe bulging disc two of the worse ones are already tearing open. A bulging disc occurs when the outer layer of the disc is forced out of its normal boundary and pushes into the spinal canal or surrounding nerve roots.

Common symptoms of Degenerative Disc Disease include:

  • Pain that is worse when sitting. While seated, the discs of the lower back have three times more load on them than when standing.
  • Pain that gets worse when bending, lifting or twisting.
  • Feeling better while walking or even running than while sitting or standing for long periods of time.
  • Feeling better changing positions often or lying down.
  • Periods of severe pain that come and go. These last from a few days to a few months before getting better. They can range from nagging pain to disabling pain. Pain can affect the low back, buttocks and thighs or the neck, depending on where the affected disc is, radiating to the arms and hands.
  • Numbness and tingling in the extremities.
  • Weakness in the leg muscles or foot drop, a possible sign of damage to the nerve root

How is degenerative disc disease treated?

Treatment options include:

https://www.cedars-sinai.org/health-library/diseases-and-conditions/d/degenerative-disc-disease.html

I have already had two disc replaced in lower neck my C5-C6 &C6-C7, it was scary to think not only are they having to do surgery on my neck. It was more they are going in through the front of neck.

Here is what I have found out for myself that took the longest it has changed how we not only see the world but react to it. I grew up riding horses playing hard, working even harder. Every job I have worked has included heavy lifting for example working at farm supply store. Every day putting out, stocking, rotating (on truck day) feed or just carrying for customer. When stocking 50lb bags of feed it is easier faster & more efficient if you do three to four at a time. Back then I would weigh anywhere from 105lb to 115lb meaning every time I was lifting almost my weight or more. This wasn’t just done once a day but every day on days we rotated feed this was done multiple times anywhere from 20 to 40 different types of feed. Then you add in I had to go clean stalls, toss hay then feed. Lets look at what those numbers offer we already know that feed is 50lb bags so add 3 of those each day to pour into the cart which held 3 bags which got wheeled around the barn. Then you had hay moving between 4 to 10 bales each day some days twice a day if winter and they were in all night, some also all day only having turnout while cleaning stalls or being ridden. One hay bale can weight up to Square bales anywhere between 30 pounds on the lighter side to 100 on the heavier. Usually alfalfa bales way more with small square bales weigh from 50 – 100lb these we use 2 to 5 daily. Now my favorite workout which I miss is cleaning stalls yes, I know gross best ab and arm work though. After cleaning 40 stalls with constant trips to tractor picking up the muck bucket lifting up to empty. I have found I destroyed my own back. Some people’s bodies can handle it for years just ended up with bad genes that couldn’t handle to workload. I made sure my daughter never had to do they type of had labor when she was younger. Never would I wish this pain the heartache of loosing who I am to anyone else. I have fought to not let go just recently after three years of fighting finally did it come to a realization it was time to find a new me. Thankfully not sleeping gives me the needed time to find out who I will be now what to do with my life. Being on so many restrictions has changed everything I spent my life toward.

This is now my life living around the pain & heartache of making sure everything I do no longer hurts my back. I have been through the surgery that helped make my life a little better. Spending two years in the pain of that vertebra broken off and causing issues this does include being angry all the time. Pain changes you doesn’t matter who you are mostly being angry not with others just at the pain that never gives you any relief. As I close this I am getting ready to lay down to get relief with my pup by my side there is something you must remember. If you have pain talk to your doctor do not let them just make it quick be firm assertive. Seeing so many people who are just abusing drugs makes it harder for them to believe the pain you could be in. Be persistent don’t let them tell you it isn’t as bad as you think it is. Finding the right doctor is key from sleep to heart to spine making sure I found the right team for me literally changed my world.

 

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The first chapter of the tale of my broken body and the fight it takes to keep going.

For warning this is long. I started having issues around 8 years ago it wasn’t much to me just pinched nerves or extreme pain. I have spent my life since a teenager between not sleeping and pain I always thought I just was pushing myself too much. Please excuse me jumping around during this post over the next few days I am going to individually cover each of my issues. With my broken body and mind this isn’t easy to open my life the world to see. But if this can reach out and help others than it has been worth the time taken. I do answer comments or questions.

But this all changed after a week of hell. Now when I say this I don’t mean just the depression, what we know now to be PTSD from my job. If it was less severe we might have called it Compassion Fatigue. I worked as an animal control officer for a city near where I live now. I had started to throw up everything including water we thought it was stress from preforming euthanasia. Now for me  having issues throwing up was considered normal thinking was just pushing my body to hard. If I wasn’t working I was either at the gym with weights or in Zumba class. This is also along with P90X, jogging 4.5 miles a day for soccer. I rotated what I do so as to keep as healthy and fit as possible. I have a passion for working out with eating healthy to stay in shape. This was different  for a few weeks I had been getting weaker with nothing seeming to help. Then black Friday came around I was in pain that kept me doubled over. We ended up at the ER for dehydration they could not find anything else wrong with me. So they sent me home. This started the test not just a few but multiple it was in this time I found out that I had more problems than I had recognized. This is my story the beggining of the end of who I was the start of restricted life. I am going to tell you what has been found with links at bottom if you would like to learn more about each diagnosis.

The first one we found is Supraventricular tachycardia is a rapid heart rate (tachycardia, or a heart rate above 100 beats per minute) that is caused by electrical impulses that originate above the heart’s ventricles. Many doctors and other health care professional include all of the many tachycardia that involve the atrioventricular node (AV node) under this classification, but others do not. Supraventricular tachycardia does not include those tachycardia rhythms that originate from the ventricles (ventricular tachycardia) such as ventricular tachycardia or ventricular fibrillation. Supraventricular tachycardia is also called paroxysmal supraventricular tachycardia and abbreviated either SVT or PSVT. The highest recorded is 152 while I was sleeping it woke me up staying that high for 3 days.

Soon came more test with a gastroenterology it is 8 years later we still have not found the cause of my throwing up. Though in spring of 2018 we did have gallbladder removed though it did help some there are new added complications on the foods that I can no longer eat which has now become even shorter. I will come back to this at a later date.

Fast forward 5 years I am working trying to figure out what to do with life when I have started blacking out on top of other complications. What makes this hard is being put on seizure precautions I can no longer drive myself anywhere. Where I live public transit is not an option I live 45 min from all my doctors. The only way to get there is driving the freeway. I get recommended to a specialist for an unrelated issue. Never before had I thought to tell my doctors about the constant pain in my neck and back. Raised that pain is weakness told that I was a wimp and should just suck it up. He runs test finding out that I have Fibromyalgia and possible that I also might have some type of arthritis causing the problems with joints in my hands. During this process he ask me how I sleep I explain how I usually don’t sleep unless I have been awake for days even then it can only be for a couple of hours at most. We discussed the fact that in that time I was working full and part time job including playing soccer. I had one practice a week and on Sundays we played two games back to back since I was on two teams. He was baffled that I wouldn’t sleep even then so was sent to a neurologist. This I will come back to.

I had spoken to him about how I had constant migraines including pain in my neck and lower back. We talked about how I could move just right even with just turning head I could pinch nerves this had been going on for the past couple of years by this point. I was a ortho specialist building which made things easier he just sent me down the hall. They did along with already full body set of X-Rays adding on sending me to go have an MRI of my neck. I was called back in less than a couple of days later that I needed to come in tomorrow to hear my results. First thing he informed us on was I have what is called Degenerative Disc Disease , describes the natural breakdown of an intervertebral disc of the spine. Disc degeneration is often the effect of natural daily stresses and minor injuries that cause spinal discs to gradually lose water as the anulus fibrosus, or the rigid outer shell of a disc, weakens. As discs weaken and lose water, they begin to collapse. This can result in pressure being put on the nerves in the spinal column, causing pain and weakness. Literally my neck and spine have broken down faster than normal it is comparable to that of a 60 year old. I have extreme herniated disc in neck and lumbar that adds to the other on going issues.

On the MRI it was shown that I had a piece of a vertebra had broken off and cutting into brain stem and spinal cord. If they had not caught it I would have been paralyzed soon. They wanted to get me into surgery before the month was out. There were complications that caused it to get put out for a month I was given very strict instructions that I was not to play any sports and no horse riding until then. We found out  that not just the bone broken off but I had to have two disc replaced in neck along with it.

The surgery went well my pain in neck was cut almost in half with a surprising twist that this problems with my right shoulder was now mostly gone. It takes about a year to be released to do most activities it is a rough road to recovery which I will cover another time. It has been long road not easy to find out that I have all these illnesses that cover each other sometimes we don’t know where they cause each other or just bad roll of the dice. The rest of my family has none of the issues except my sister that suffers migraines.

We began looking into why I didn’t sleep they were thinking it could be due to pain. After three sleep studies we now have an answer I have unspecified type of hyperinsomnia with insomnia. Along with this is studying to find out why I was blacking out with end result of sleep paralysis for a few seconds after.  I had a three day and two week long sleep studies with in the past two years including two EEGS to attempt to find the cause and type of seizure activites. Now this does get tricky to explain. Which I will do more on my next post. I do not sleep for over a week at a time. There are days in which I might get an hour of sleep or just lay for hours on end with never losing consciousness. It was first time my doctors have ever seen anything like it which has made trying to treat it harder. I do “crash” if I can exert enough energy although with other problems I have it is impossible to do anything to that wears me out enough. Even when I played soccer and ran 4.5 miles a day my body could be worn out but on my mind. This I will go more into on my next post.

To quickly cover the seizure part since this is getting so long they have diagnosed me with Atonic seizures also know as drop seizures. This is normally only found in childern but it is the closest thing they  have been able to diagnose me with. It is hard to handle just blacking out and dropping to the ground. When I do wake up I am in a tempary sleep paralysis. Thank fully with medication they have gotten less frequent for only few times a day instead of constant. Though I am still considered unsafe to drive.

Now I have to say this hasn’t just changed my life but turned it upside down. I can no longer workout, drive or have horses in my life. I have had to rehome my Tennessee Walking horse even though they are good horses for people with bad backs like mine. I used to dance, play sports give my all everyday. It has become impossible to work due to the many restrictions that I have to keep myself safe from farther injury.  I have had to quit everything that was always apart of me. Things I took for granted from driving to showing horses event training is no longer an option as everything envoled is a hazard to my neck and back. Having a seizure while I ride is just an ER visit waiting to happen. I am starting over rewriting who I am and what makes the persons I will be. In other post I will talk about these struggles that has changed my entire life. I will talk about not just how they affect me but everyone in my life. From family to friends ones that have walked out on my life to the amazingn people who have stood by my side throughout the anger, fear of losing self, depression of loosing my world. If there is a topic you would like for me to talk about add it into the comment section so I can write about it.

I have am adding some links so you can read a more medical explanation of my conditions. Though keep this in mind these are a basic for them many I am considered unspecified due to the unique circumstances involved with my specific case.  I hope this reaches to someone that is going through this to show them it does get better. I do have days I do not leave bed but others I have worked to enjoy life. I am finding new hobbies or restarting old.

https://psychcentral.com/disorders/depression/

https://www.mayoclinic.org/diseases-conditions/supraventricular-tachycardia/symptoms-causes/syc-20355243

https://www.mayoclinic.org/diseases-conditions/fibromyalgia/symptoms-causes/syc-20354780

https://www.spine-health.com/conditions/degenerative-disc-disease/what-degenerative-disc-disease

https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967

http://www.compassionfatigue.org

 

https://sleepfoundation.org/sleep-disorders-problems

https://www.epilepsy.com/learn/types-seizures/atonic-seizure

The struggle to do little things.

I have been wanting to write about this since I was first asked if I would write a blog. I have been asked how it feels during my normal day to day. I have problems trying to explain how it feels. From the Fibromyalgia to no sleep it all effects me in different ways. One strangest feelings comes from my Fibro it literally feels like someone/thing is gripping my muscles and trying to strip them from the bones. This feeling can last anywhere from hours to days, what helps on these days is I am able to take my pain medications if taken early enough if not that bad then I can go to sleep.

From the minute that I wake up I feel nothing but pain and stiffness it feels on good days as though I got dumped off a horse, during a flare it is as if hit then drug by a train. It can take me up to an hour of gentle stretching paired with a heating pad to help my back loosen up. Being up all night just laying in bed with out sleeping your muscles don’t get to fully relax. On the nights that sleep gathers me in its arms I can wake up fast being woken by pain thankful to not have as much stiffness. I spend most of my time in the bed curled up wishing I was out in the field on my beautiful Tennessee Walking Horse.

That is what makes this truly hard to handle not just the fact that I have lost everything I used to enjoy. I now no longer can turn to my horses when I  am having bad days. Not being able to ride makes some days unbearable. Even taking the hour long trip while visiting my sister is something that will me need a couple of hours of rest, just laying in bed sometimes I do nap,  just when arriving at her house. It reminds me of being pregnant where you are often tried the entire day knowing even if you get sleep you will still be exhausted when you wake up.

This all comes together with not just a feeling of frustration but having to also live with the many restrictions that I have, there are days that it just isn’t enough to rest even more with medications The prescriptions I am on make me tired, relax muscles, preventative yet for all the good they have done for my life there are things of which make it worse.

Having issues from every joint & muscle hurt not just a little bit of pain, the type of pain that keeps you unable to walk. I have neurological problems that stem not just from neck but wrist as well. The nerves in my wrist are being pinched down in such a way that it causes me to lose grip that is the easiest problem to handle it’s the shots of electricity shooting down arms, legs sometimes it’s little shocks everywhere.

My hands have not just arthritic symptoms the joints everyday all day is the feeling of my knuckles are in a vice grip. If the AC is on in the house I suffer stiff painful hands. There is so much more to say about how things happen to me. Since this is getting long I am going to make it two parts. I will edit this if I noticed I missed something or made a mistake.

When they don’t, you do, be your own advocate & research yourself. Part one

When all this started the first thing I did was research everything. I made sure to get copied of all doctors visits, going over everything making sure to know everything. Being your own advocate is the smartest thing you can do. From the little details to medications it is important to have the knowledge.The thing I tell everyone is make notes of any questions you have. I have learned not to be shy not only when it comes down to questions but when it comes to how you feel. Something that you have to remember is the fact that they cannot feel what goes on inside of your body.

Recently I had to handle the fact that after years of being stuck throwing up everything that I ate almost every meal every time. I was constantly between 15 to 20lb under weight at all times due to malnutrition. It was a battle that I knew was only going to get worse as time passed the longer suffering the less of a favor it was doing to my body. I decided to speak up to my new PCP after one morning I began throwing up quarter sized drops of blood even though this had happened before. I was embarrassed about the fact that after arriving at the I didn’t throw up. I am thankful that whatever shot they gave me worked. Once arriving back at home first thing that was done was a call to PCP for an appointment to speak to them on what has been happening.

Around 10 years ago I had started to throw up everything this is including water didn’t matter if sipped or drank regular. From just crackers to burnt toast and ginger ale nothing seemed to make a difference. At the time things started I was a muscular, well toned 140 lb at 5’7 for a female having for the first time in my life hitting a healthy weight. I was doing P90X twice a day, gym every night for Zumba classes twice a week along with free weights, jogging 4.5 miles a day. If summer time swimming than year round would spend my time riding horses, Wed & Sundays played soccer. At the time working a very physically demanding job it meant making sure to stay in the best shape possible.

Now fast forward to sitting in doctor’s office speaking to him on what has been happening. He tells me that it couldn’t be as bad as that since I still looked healthy. So I gave him the file from the past which showed him all of the test they took last time. After reading it there was still doubt I didn’t allow him to push this under the rug. I asked what else to do so he would understand how bad this had gotten. I had already planned to not leave until he was taking me seriously. So I did the only thing that would make sense, something most people might not have the nerve to try.

I normally wore really loose comfortable clothing including a hoodie to stay warm. So underneath I had worn shorts and sports bra. I asked him if he really wanted to see how bad it was that I could show him. After I finished taking off the over cloths did his face change. With nothing hiding what most people didn’t get to see. During that moment I heard the words said all those years back. “How are you still able to walk”, though this time was said without the fear this time. The first time I had dropped below 100 lb with almost no fat left on my body will not lie what was left was all butt and thighs. This time was different though only bouncing from 100-115 lb keeping enough on that unless in a tight fitting shirt it could be hidden. When he finally started to examine me he said that it was worse than he had thought you could see every rib with stomach sucked in enough that ribs stuck out over it. Then running that hand my spine counting how many of the vertebra that could be seen you could count them all with hip bones showing clearly that something wasn’t good. He called the nurse into room telling them to immediately have an ultra sound scheduled. Seeing the look on her face as she saw me was weird for me her jaw literally dropped asked if I was okay or needed anything.

Now lets fast forward to the morning of my abdominal ultrasound. I have had a few over the years with my issues there wasn’t a problem. I knew how to dress what to prepare for, I always watch their faces. After about 5 minutes the lady got a weird look on her face and tells me since she is only allowed to do a preliminary look since still in training. The tech walked in started talking to me like everything is going well. What followed I wasn’t prepared for, she got this strange look on her face one that people get when you know something is wrong. I asked her what she thought about what she saw was it bad. She of course couldn’t answer but her face said it all.

A week later my PCP’s office was calling me I answered wishing it wasn’t anything big but afraid. Like most people my mind took me to the worst place possible thinking cancer. Thankfully it wasn’t the information they were calling with. There had been an appointment made for me with a gastroenterologist to talk to him about what had been seen. I arrived at that point shaking scared of what they were fixing to tell me about things. I had laid down on the table while waiting from a long night of throwing up once again or as I should say per usual.

Knowing I would like this doctor from the moment that he opened the door. I heard the door open so I turned my head so I could see who was walking through. It was funny to see he grabbed both sides of the doorway leaned back raised voice to say “on no is it already that bad!!!”. When I sat up and told him I was just tired he smiled and walked in. He told me that I needed surgery due to an extremely inflammed gallbladder that was causing all my problems. It possibley could have been then gallbladder that started this problem all those years ago. Hoping that this will fix it we scheduled it for two weeks out.

The surgery went great was over quickly and on my way home shortly after to rest and sip some ice cold water. After the initial period of eatting only what was safe afterward came the day I was cleared to eat what I want I ate everything I could get my hands on. Some foods my stomach still hates but that I can handle that since I have become accustomed to eating a very picky diet though I had lost some foods.

When I went back for my follow up visit he told me that my gall bladder was so inflammed that it was even stuck to all the surrounding organs. “It was really pissed off” as he put it also “there is no surprise that you were having thoses issues. It should have been caught much earlier.”

Now that this has been over for about six months I am proud to say I have gained weight. I am for the first time, actually for entire life at a healthy weight, sitting around 135-140 it fluxuates. I have more energy which is great, the issue is now I have almost no cloths that fit, being completely unable to work not going to be getting any soon. The only good thing is that I have lots of comfortable pjs and scrubs.

Where would I be if I had never pushed or been able to stand up finally putting my foot down with my doctor. You have to make sure to not let them it get to you, stand up for yourself let them know they need to listen to you. Make sure you don’t quit even if it takes multiple visits to make them take you seriously. Better yet find a doctor that will, I had to change PCP’s three times to finally find one that took me serious. Problems with others include telling me that “having an eating disorder isn’t a medical issue but a mental one that I needed to speak to my therapist about it”. Don’t stay with one you don’t feel comfortable speaking 100% honestly with. Mine know all of my past history from all aspects of life. It is the only way to make sure they know how to treat you. Even if it is something you are embarrased about DON’T BE. They have seen and heard it all. Put your trust into them that way they can do everything possible to help you.

A day in the life of me.

I have spoke some on the different diagnosis I have had but not much about how it effects my day to day. There are good days sometimes others I am bed ridden the pain and mobility can be a struggle not just for myself but for others around me.

I have had my entire life ripped from under my feet, not in the I have had a bad day way, I lost everything that defined me from horses to everyday parts of life I can no longer do. It was you need surgery now add on some restrictions including no driving, then just make sure to add everything you enjoy doing is dangerous for your body. The day that realization became real for me was the day my Star was loaded into the trailer headed to a new home.

Star was my Tennessee Walking Horse, pictured above, he was huge his cheek was the size of my face. Handful is no close to putting how much work I had to put into him, after being in a field then not handled or worked with. I had him for eight years. One day it was going on trail rides everyday the next week I was being informed that I needed surgery. Three years later he was being loaded onto a trailer. He panicked I had to calm him down before they could drive away. It is almost six months later that pain though he his no longer with me he is alive.

I have had to quit the sports I loved working out hard for an hour or two a night is no longer an option. For me this is what was the worse letting my body go. Yoga has become a part of my nightly routine when I can handle it. Most nights wanting to isn’t enough if I could then I would be more than willing to break a sweat.

My nights are harder not sleeping this affects every part of someones life. I am physically tired 99% of the time due to my body does not get to relax as it would during a nights sleep. Napping is something I thankfully can do even though it isn’t what you would think of when nap comes to mind. For me a nap can be sleep when it is there are two hours of sleep. Most days it consist of getting comfortable with meditation to allow my brain to clear. Resting this way gives my body extra rest.

Over the next few days I am going to give a more intimate view of my days without sleep. What it feels like the thought processes which accompany it. As well as some things of which my friends have experienced over the years.

Medication Nightmare.

Well this one instead of talking about one of my many medical issues,  I’m going to cover my recent two weeks fighting to fill two medications.

Well on July 3rd I went in to get my pain medications filled as well as two others I am on. First I tell them for the 24th time literally, I have been with this doctor two years and script is same it has been for three, they need to change does on script. It has not changed in 3 years yet in their computer system they have it wrong and it still has not been changed to reflect that in system. So every time they send me with wrong prescription, I forget to check sometimes, it has to go through this long process. Starting with calling insurance well it needs new PA, call doctor they show it is still good. Finding out from pharmacy it isn’t same script as PA. Calling doctor so they can contact pharmacy with the amended script this process of waiting for this all to be done takes about a week. Meaning I’m picking up separate scripts at separate times This isn’t easy to have done considering due to seizures I’m unable to drive self to just pick them up.

I knew that all of these medications need to have a new prior authorization sent into insurance. So I make sure to tell them twice well she only notes that two of them do. I correct her and tell them again before I leave. Before I go any farther I want to say this has been a major issue for the entire time I have been with this office. Well if you are thinking find another office I have one of the top doctors when it comes to spines the problem isn’t the doctor but prescription manager.

I’m going give you a quick rundown of how things happened.

  • July 3rd- Between 9am and ended 11am- Pick up prescription inform them I need updated Prior Approval for all medications. They do not send them in even question that they are needed. Get call from pharmacy cannot fill certain med except for 7 days. I call insurance to ask why I have been on it for 5 years, I had missed two months due to out of doctors appointments with insurance (this is another issue), so treating as new script. I call insurance all they need is prior approval and last 6 months of prescription history from doctors office. I call doctors office tell them they argue but say they will do it.
  • July 6- 9am to 10:30 pm-Call pharmacy to see if scripts will be ready they say insurance hasn’t approved. So I call insurance to make sure everything was sent in well they haven’t received anything. Contact doctors office I was informed that the nurse in charge of it hasn’t had time. So I speak to her she tells me PA was sent and insurance did not send anything to them about the script history. I explain what they need she tells me when she has time she will see if they have sent anything.
  • July 7th-9am to 10am- Again contact insurance to find out nothing has been send including the new PA they had asked for that should have already been received. Doctors off is contacted I ask to speak with office manager whom has helped in the past I explain what is needed he says it all shows as sent. I inform him I have spoken to the IN, they haven’t received anything. So again tell him what I need to send. He says he will work on it, now he is normally on top of things when it comes to this.
  • July 9 – 9   am to 11 am- Speak to pharmacy who called me to say one medication was ready but not one of two that was major issue. I again get in touch with insurance they have received nothing.
  • July 11 – 9am I again speak to pharmacy who lets me know it still has not been approved apologizing for the issues that is happening. Taking my time I let them know that I am not mad at them for any of this it is out of their control. I am now at point of frustration that I can no longer stay calm. I have tried to call doctors office  they are not answering the phone.
  • July 12- 9 am- Doctors office finally puts nurse that is in charge of prescriptions on the phone, she will get the last 60 days of history from pharmacy to send into IN. The IN has told me they need last 6 months of prescribing history from doctors office and hangs up on me when I try to tell her this. I call back asking to speak to office manager again he is out to lunch so I leave a message.

It is now July 15 I am waiting till tomorrow morning I am tired of the games and fighting with them to do what they are supposed to do. So what is the best option now? I am headed up there to sit with the office manager until things get done properly. From just getting the correct prescription to getting the script history sent to insurance. I’m done playing nice, now saying this I will still be professional and polite though I will be firm no longer being pushed around. No one should have to fight for three weeks to pick up a needed medication to be able to function from day to day. Without these medications I am bed ridden due to the extreme issues I have.

I think personally I have been more than reasonable including the fact I am doing everything in my power to find the information needed so this goes smoothly. What makes me sad on this is the fact that not only is this not a one time issue. It is the fact that other people that are even worse off then me are fighting this exact same battle everyday. It is out of my hands once I drop off the script, I cannot send in any paperwork that is needed. Everything must come from the doctors office, nothing sent in from the pharmacy will be accepted.

What makes this worse is the issue that I have never once abused any of my medications. They can destroy your body so taking them even as recommended from prolonged use they cause Liver toxicity, Kidney failure, Severe constipation, Urinary retention, Infection, Respiratory failure. These are the long term influences of just one of my medications. Why would I even risk chancing this happening any sooner? I am on 6 medications right now if those are just the effects of one can you image the combined effects these can cause. Even then I get treated as if I could possibly abuse them just because others have, it is making it a hassle just to get what I need, honestly wish I didn’t have the health issues that requires them.

This is my fight for as close to a normal life as possible. I will never understand the thought process behind someone simply not doing their job. Being as I have sat down with the office manager many times seeing it literally takes less than ten minutes. This includes looking up and sending PA & script history. We have changed the script that is wrong multiple times in the system yet it keeps getting the wrong strength placed back. Hopefully after tomorrow things will fixed to where I do not have to worry about this again until next year.

May the road rise up to meet you. May the wind always be at your back. May the sunshine warm upon your face, and rains fall soft upon your fields.

A world without sleep.

I sleep so seldom that the time I do are odd to me, from waking up which is a little disorienting to the energy that is like being plugged into the sun. Sleeping is something that most people do as a daily routine for them that is normal. For mine it is the opposite, I spend the that time working on projects those can be anything from meditation to finishing projects.

For some I am sure that it sounds weird to think for me having 24/7 literally, to do anything I want. Though it can be problematic being someone who is the type to get something done the second that I know of it or am aware it needs done. I get things done quick and efficiently. Enjoying being able to take the time to clean the house is a plus. Any project knowing that even when things go wrong there is no reason to rush or panic. Saying this is making it seem like there isn’t anything that could be a negative.

I do have times where it is lonely when everyone is asleep you must adjust to each persons needs. Some people can’t sleep when there are lights others noise but that isn’t the issue. Simply adjusting to how others need the room or house to sleep is being respectful of others.  It is doing something on a game, reading something interesting what makes this hard is the fact that I cannot tell a single soul of what is going on. I just make a note then wait for the night to roll through. By morning it just doesn’t seem half as important to me even if I still would like to tell them.  The most frustrating thing about it is that my hours feel like days which feel like weeks you get the point I am trying to make. This even goes into the days that I handle.

Have you ever thought about what it would be like to not need any sleep at all? It sounds great to have all this extra time to get things done. Now think about the fact that you have been up an entire week. Your body is exhausted even though you spent all night in bed the muscles still haven’t gotten the rest given when you sleep. Only so many hours that can be spent gaming, reading ect. After a week of no sleep then you get this feeling of being weighed down.

Something that was brought to my attention the other day of which I did not know about the effects of happen from elongated time of wakefulness. It has been called “the loop” from someone close to me this consist of me telling a story or fact. Followed by asking a bit later if I had told it before this happens a few times. What amused me the most was the fact that if they just let me say it again that I would stop trying to say it. If told that, yes, I had told them then it would be argued that I hadn’t and told them again. From an outsiders perspective there are effects that I do not notice. Foremost is the fact of being unfocused, other wise being scatter brained. I am unable to either focus on a given subject or changing subjects sometimes even mid sentence. This doesn’t just include spoken word but actions starting yet never finishing project.

This is something that also becomes a problem when I have slept I wake up with boundless energy. I have been known to spend an entire day working on projects, I start them but partly into them I think of something else that needs to be done. A repeating pattern until many projects need finished. Positive point of this was that I will have things to be done for days to come. I will take all day working on a project making sure that it is done correctly. From alphabetizing, color coordination to almost measuring the exact distance between items on mantle. Everything has a place doesn’t matter what order is something that must be had. Though my sewing gets a little messy with the scraps of fabric during work, it does get cleaned up when finished at end of day.

I do feel excessively tired at times which make it to where most days I have to lay down and rest. I do take naps at times of which can last anywhere from 20 minutes to over 2 hours. Thankfully the energy that it gives me will allow for more things to be done.

I often get asked what I do during all this free time. That answer is fairly simple video games, read, tv, research (mostly horses), sewing, writing these, yoga, meditation well anything that makes me happy. I’ve decided to try things that could become time-consuming. I don’t know yet what else I will try but I know that I will spend my time working on becoming the best I can at what I do. Hoping some of it will help with one of my favorite things cosplay. It means more sewing maybe pick up on some specialty makeup for some of the more elaborate cosplay.

If you have questions on anything I haven’t answered or something you want me to cover just comment. I will make sure it gets either edited into this post or made into one of its own if it needs enough space to cover.

Picture by: Terry Clausen Photography