Pleasant Company.

Over the past few weeks I have been introduced to many people who suffer from chronic illnesses and disabilities. Some online through blog posts, some through video games, and others in real life. I have gotten to talk and help quite a few people who are suffering. I have seen people in so much worse situations and see them powering through with a strength that makes me ashamed of myself.

In my opinion, everyone who suffers like this goes through a period of time when they question themselves on how much suffering they go through. I have been hit hard this last week. I have question how bad am I, what level pain should I admit too, and what right do I have to suffer in all my suffering. One of my issues with invisible illnesses is that I am in constant stress over being judged on how I look. “You don’t look sick” “Are you sure you aren’t feeling well” “It can’t be that bad if you are still able to walk around your house” Words ring in my ears and brain, reminding me that it must all be in my head. Famous words for anyone suffering from fibromyalgia as most doctors are quick to through them out.

I have had personal events happen that reinforce this. I have been denied disability. I submitted to the 8 month long process that took place and have seen more doctors and nurse than I care to admit. Being weighed and measured, poked and prodded has been an absolute nightmare. I suffered through it and in the end I was deemed too fit to be on disability. In the end letter, it was determined that I did suffer from fibromyalgia, insomnia, anxiety disorder, nerve pain, muscle pain and more. A total of 9 severe problems with my health. They did not find these severe enough to warrant me disabled. My final icing on the cake was reading on of the last lines in my letter saying: “If your job is too difficult for your condition, find an easier job.” My mind’s sarcastic response was “Sure I’ll go to the job tree and pick a new job straight off the branch.”

I have also had to fight with new insurance and new medications. I have been prescribed Lyrica. This is the first drug that I have seen that is specifically made for fibromyalgia sufferers. Being new, it is expensive. The classification it has been giving by insurance is that unless every other test and drug has been used and found not to work, then they will not pay for it. Fighting to get help is one of the most common themes I see in chronic illness patients. As if we didn’t suffer enough.

In my recent post that has been published, I have been able to interact with many people that have a myriad of different conditions. I have wept over reading the stories of those who have suffered. I have talked and comforted those who asked. I have been praised for helping raise our voice so others can see. In all of this, I look back at myself and ask “Am I really that sick?” Do I have the right to be a voice if I am not suffering as much as those around me. I am constantly questioned on how bad my pain and condition is that I am beginning to question myself. Yes, I have pain but is it bad enough.

I read an article recently that brought it to light for me. Erin from The Mighty.com posted on how Doctors are Advocating on Pain Acceptance. Doctors are now looking into “pain acceptance” as a treatment philosophy. It is an eye opening to see the direction this is going. As someone who suffers, I find it interesting to see that not believing chronic pain sufferers is a new direction to go. To be told that we should learn to live with the pain is insulting. To be told that my opinion, the patient’s opinion is not considered and the doctor’s view of my pain and condition makes me all the more fearful of doctors who don’t listen. Being told that I should just accept and live in pain, which is something I do every day, makes my and so many other voices sound like we are complainers.

It is infuriating.

If anything I have seen over these past few weeks is how many there are of us. It has shown me that we need a voice. It has shown that I matter. It has shown me more kind and compassionate people who, suffering like me, agree that we are not being heard. We have to fight our illness. We have to fight for our diagnosis. We have to sometimes fight our doctors and pharmacies and lawmakers. We have to fight to make our voices heard.

Thank you all for the pleasant company.

#hugapony my friends.

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World War me.

I am recovering from my last convention and am trying to regain lost rest and sleep. I want to thank everyone who came out to visit and I plan on special post for all of you. I am humbled and honored by the response that was given. It meant as much to me as to you.

I have been diagnosed Fibromyalgia, panic disorder, insomnia, and quite a few other conditions for 5 years now. I have experienced a lot and have struggled to find the help I need to make it through my day to day routine much less when life throws me curve balls. I have tried and put into place all manner of methods of managing my conditions. I have changed diet, put in a modified exercise regiment, and adjusted my life to fit my condition.

I also take prescribed opioids.

News outlets have been reporting on the “Opioid Crisis” that has arisen. They talk about the real effects on people’s lives. They talk about the families being torn apart with the misuse of the drug. They are representing every side of the issue.

Except mine.

I, like many other chronic illness sufferers, rely on the use of these drugs to lead somewhat regular lives. Understandably we do not represent all responsible opioid use. However, we do regularly get added to the group of opioid abusers. The news loves to report the numbers of total users or the max number of prescribed people in US. Using these numbers all kinds of data can be thrown around as to the approximate number of abusers. I am not ignoring the rising numbers of opioid related deaths, I fear that too many people are caught up in the panic and it is hurting the people who need the help.

I have recently changed pharmacies due to the national response. CVS has come out to say that they will not prescribe more than a weeks worth of an opioid to cut down on the number of pills in the public. This hurts in several ways. I now have more co-pays to look forward to paying. I now have the stress of going to the pharmacy once a week instead of once a month. I get to be faced with the pharmacy techs who judge me on my condition. They have to evaluate what I take, how many I take, and how often I take it to ensure that I am doing everything correctly.

It can be humiliating and debilitating.

It can also lead to them to refusing to fill a medication. When I was first being diagnosed, I had a tech tell me I couldn’t have any more medication, even though I was taking them as prescribed (Post is here “Anxiety now?“). I have also been through the panic of not being able to see the doctor in time or canceling my appointment so I end up running out before I can get the help I need (Oh Day of days). It is so tight now, my new doctor has a new form that I had to fill out saying I have to bring all my meds into the office each visit and be subjected to random pill count checks.

To quote a friend, “This is victim shaming.”

“We are not getting the prescribed medications from our dealer or a junkie. We getting these medications from a licensed doctor who has examined, poked, prodded, and run tests to find out what can help. We are not using these pills for recreational use. We are using them so we can get out of bed and live a somewhat normal and have a job.”

This is a crisis. My crisis. My own personal war inside me. I have to fight to get help. I have to fight to get time to go to the doctor each time. Taking off work to go see a doctor takes a lot of time and most jobs are not forgiving. I have to look at what I have and ration. I have several medications that are “As needed”. Do I take them now when I am having a rough day or do I save it in case I have a worse day? Why do I have to choose?  Who is speaking for me? For us?

I am only one small voice on a small platform.

I am speaking up.

Don’t forget us in the crisis.

#hugaplushie my friends.

 

 

 

Truth and Vindication.

It has been a couple weeks from my last post. I have struggled greatly at what I have wanted to do next. I have thought long and hard about continuing my blog and how I help others. I thought upon my own condition and the battles I have fought. My own demons have been at battle in my body in my own mini civil war. I have been seeking answers for several years now.

And now I had them.

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Knowledge is a double-edged sword.

I have something I can look in the eye and know what I am battling. I have official paperwork and can show people that yes I am sick. I have been examined by a medical professional and have been given the answer. I can proceed on to the next steps and, hopefully, get the proper help.

It also cuts me deep. I cannot deny or excuse myself. I have to admit to myself that “Yes, I am sick.” I was not as prepared for the answer as I thought.

In some small part, I must have even had doubts myself. Who wants to admit to themselves they are broken? It goes to show that even I had doubts about myself. No one is safe from their own inner voice.

I am broken.

And that has to be OK.

I feel like I have run one of the biggest marathons in my life. I have worked hard at research into what is wrong with me. Consulting my doctor, friends, and family for information. I have used my unknown to help countless others. It has been the fuel to drive me to reach my hand out and pick people up. Now that I have the answer, am I out of gas? How do I go on from here? What changes now?

I have spent 2 weeks trying to answer these questions. I am no closer to a solution than I was then. But, I have not thrown in the towel.

Where one journey ends, another begins.

I find myself confused at the finish line I crossed. I feel like I stumbled through the tape and am now in a daze. My journey has been about answers for myself and others. Now instead of seeking answers, I will be looking for help and treatments. I will be walking down a slightly different path. A new race has begun.

I hope you all can join me on this journey.

May all your plushies get hugs.

Pilling around.

I had another doctor’s visit this past week. My regular 3 month follow-up. It was supposed to be a regular check up but this was my first one since my asking about my condition and fibromyalgia. It was a bit hard to accept a negative response when I first asked about it. I was told it was all in my head and I was dismissed. It was not what I thought my doctor who has helped me so much would do to me.

I went in to the exam room and had all my vitals checked (lost 2 pounds at 210, 126/80, 97.1 temp). Chatted with the nurse, who knows me on sight now, about my emotional support dog and how much he is helping. Small talk. She left and I waited in silence.

After 5 minutes my doctor came in.

She asked how I was doing and I told her not very well. My pain had been flaring up quite a bit, life was still very stressful with moving into a new apartment (and dealing with new management and other issues), my wife being in another car accident (she was OK but is doing physical therapy because of injuries sustained), and surviving several other private things that I cannot share here.

She listened as she checked my lungs and commented a word or two of concern when needed. She then said she had been looking over my case and she agreed that she might have been too hasty in her decision to dismiss my claims, especially in light of me having increased pain. She was going to add another prescription to my usual medication to help with the pain.

I was surprised but happy to have her, in my opinion, back on my side looking out for me.

 

I went home and filled all my meds and in the next few days dealt with the addition of more side effects (all three of my meds cause drowsiness and dizziness) and my body trying to respond to them. It has been a rough weekend for me.

I have had to rely on my family and friends quite a bit as I have had more than several moments of having to clutch the wall in a dizzy spell, falling asleep in the middle of the afternoon, not mixing them up or overdosing, and making sure I am not driving. I am not sure people know the responsibility of taking medications. There is a lot more work than people know.

Making sure to keep track of them (there is a fantastic app called Medisafe that tracks when to take something, how many pills you have, and when to refill) is a part-time job. You become a pharmacist, almost, with knowing what to take, how to take it, when to take it.  You have to check in with those around you to see how badly its affecting you because your reality is skewed. You fight to maintain your concentration in the simplest tasks. You get criticized because you are on medication and you are weak and just need to feel better.

I am here to tell you that it is OK to need medication to help you.

I am here to encourage you that it is OK to get help.

I am here to tell you to talk to your doctor to get help.

I am here to tell you to stop listening to those who criticize.

Only you know what you are going through. I understand the struggle and the need for help. I have lived with the pain daily. It is beyond OK to look for help in your life. Lets end all the shaming in being prescribed medication BECAUSE YOUR BRAIN IS SICK. If you had a kidney infection or diabetes, you would take antibiotics or insulin to help your body. This is considered normal. The brain should be treated the same way.

Sometimes it can be therapy (stuffed or otherwise).

Sometimes it takes medication.

There is no shame in asking for help.

I’m not.

#hugapony

 

Oh day of days.

Crying. I am crying.

I can’t stop.

It is all my fault I feel.

I could have done something different. I could have been better. I should have been better.

I had a doctor’s appointment today to refill my medication because I literally ran out today. My last dose was this morning. My doctors appointment was scheduled and when I got to the office I was held up for paperwork in the main lobby. I was told I did not have to do any paperwork because I don’t have insurance it would be self pay. While waiting to get my paperwork the receptionist were talking and chatting so much that when another person came by they told them that they needed to finish up my paperwork so I could get to my doctors appointment. Because they took so long getting my paperwork to go see the doctor which I was not supposed to be doing anyway I ended up being 15 minutes late to my doctors appointment at which time I was informed that I was too late for my appointment and told to reschedule for next week.

I was in full panic mode.

Ask and then begged explaining that I had run out of my medication and that I needed to see the doctor and I was met with just a plain no from the nurse. I ended up barely talking to the receptionist asking if I could reschedule for later today or at least get a refill for the weekend until my appointment could be set.

I have to tell you that I was in shock the entire time. My body was numb and I just couldn’t believe that it would happen that way. My hands were trembling as I walked downstairs to the lobby and sat down to call my wife.

I had forgotten that I had to pay for parking and I left the only bank card with money on it at the moment at the house. Because I did not see the doctor I did not get my slip to cover for my parking and I did not have any money on me to pay for parking. Frantically I looked through all my pockets and found $0.71 in change I went and checked the parking charge and it was a dollar.

Defeat yet again.

I talk to my wife who was understandably furious at the situation and I tried to remain calm but I’m still in shock.

Somehow I just feel this is my fault I feel that I should have left earlier or done something different or ran to the appointment or hurried up the receptionist or anything. I know part of my problem is self-blame and in this situation I know while there’s only so much I can do I still feel it was my fault.

I am now sitting in my car across the street because of a very, very nice lady at the ticket counter let me go through without paying for parking. Small simple acts of kindness I think are going to save me as they do so many people.

Unfortunately while I’m trying to be very grateful for that wonderful act my body is still in full panic because I don’t know how I’m going to make it through this weekend and next week without my medication. Detox is not fun as a recorded here before and I’m not looking forward to doing that again. I am praying that my doctor cruise a small prescription so that I don’t run out again so I sit here and wait pleading, begging, praying for another miracle.

I’m hugging my pony very very tight right now.

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I now ask for all my dear readers for your prayers and strength. I hate asking for things it’s a pride issue something that I need to get over but I just don’t know how I’m going to be able to make it through without a miracle.

I hope all of you are having a better day than I am.

Hug your ponies for me my friends.

New meds.

It has come to this. While I know it is a good thing to get help, I can’t shake the feeling of failure in being prescribed a new medication. I have had a series of panic attacks of the past month, for good reason I believe, and I went in for my 3 month check up.

I want to point out that I love my doctor. Now that we have a working relationship, and we know how each other think, we have been working together to get me help. I had mentioned all the stuff that has been going on in the past month and the panic attacks (also this blog as well, HI DOC!!) and she gently asked if I wanted to try another medication for those times.

I felt a little apprehension as this is another step in my mind. down the path of dependency something I am very adverse to. At the same time, I have slowly slipping down a dark path that I don’t want to think about.

I agreed.

So far I have found it helpful, with a slight crash at the end of it. I have been trying to time it so I am asleep when it happens. Who knows. I hope it helps.

At this point, doing nothing would hurt worse.

Hug a pony my friends.

Doctor Redux.

Once more unto the breach, dear friends, once more;
Or close the wall up with our English dead.
In peace there’s nothing so becomes a man
As modest stillness and humility;
But when the blast of war blows in our ears,
Then imitate the action of the tiger. . . .

Henry The Fifth, William Shakespeare.

This was my 30 day check up today. This was a day back to the doctor. I was feeling a bit nervous as most of you know, I had a bad reaction to when I ran out this last time.

I was not a pleasant person coming into this.

I had quite a few things to say to the doctor. I was hurt, I felt betrayed. The feeling of trust I had was gone due to the fact that I had been through one of the worse weekends in a long while.

I was a bit nervous at first but it has gotten easier talking to her about everything. I explained everything I had been through and what dose I was taking. She agreed that it had been helping and that she say a difference.

So now, here I am with a 3 month supply and hope in my heart that I now have ally in this fight against my depression.

And I still have a pony to hug.

Anxiety now?

So I have been on medication for almost 2 weeks now. I have been without pain from the day I started.

It has felt amazing.

My headaches have not been there. My back is loosening up. I have slept well. This isn’t to say I haven’t had a few side effects but overall, it has gone well.

And of course, today happened.

I have been running low on my medication. I have been meaning to call the doctor and talk to her about as I will run out before I will see her again. I called to get a refill and found out she had not prescribed one.

Ok no big deal.

I call my doctor’s office and ask to see if I could get another refill on it and they readily agreed. They told me they would talk to the doctor, and they would be contacting the pharmacy.

That was yesterday.

Today, I had not heard from the pharmacy. I called the automated line and it kept saying that it had not been filled. Getting anxious, I decided to call the pharmacy. I was not prepared for the quick conversation that followed.

“Yes I am calling about my prescription refill.”

“Name, Date of birth”

I replied with the correct information.

“Ah yes sir. I see that this was a prescription that did not have a refill. The doctor has informed us that this will be the LAST time we will be refilling this prescription. We will not do this again.”

“Excuse me?”

“Your prescription was refill will be done in an hour please come by to pick this up then. Thank you”

*click

I was stunned. I have never had a refill for this before. Heck, I have never had this medicine before.

I felt Ashamed and embarrassed. What had I done to be treated like a drug addict? Why was this said to me? Was my doctor mad at me? Did they think I was abusing my dose?

It was this downward spiral was further pushed down due to me being late on my medication. I had not had a panic attack in a while but this started a mild one for me. The feeling that I was alone and that no one believed that I needed to take my medicine. This is what had kept me from going to the doctor for many years along with the lack of courage to admit I had a problem and the willingness to do something about it.

This did quite a number to that.

I have talked to a few friends of mine and was told by a few that I was treated not only poorly but that this could be major violation. I have calmed down, and taken my meds.

I will be hugging a pony tonight.

Aftermath

I felt like a kid in that doctors exam room. I let things out like I have never have before. I couldn’t speak at times because speaking would be admitting I had a problem. I push the words out as best I could. I held and stroked my little Fluttershy so hard, I felt as if I would rub a hole through her.

The doctor was patient and took her time. I told her I was not a fan of doctors and told her why. She agreed with me that I would have no reason to trust doctors after what I had been through. She told me my options and prescribed some medication for the pain/depression and recommended therapy.

The first day after was great. I had lived so long with the pain that I had no idea what it was like to not have it anymore. It was almost intoxicating. To move and walk and talk without pain or to not have that constant ache that wears me down. It was beautiful.

Then came the next day.

I started off with a headache and took my pills and waited.

And waited

And waited

After the 2nd hour it was getting a little fuzzier but still that constant ache was like a faded memory. Soon after another side effect kicked in.

I itched.

I itched all over.

I ended up scratching and rubbing my nose so much, I looked like a crackhead. Did not help improve my mood.

Then today happened.

I went into work after a VERY rough night of me or the wife not sleeping and started going through my routine. Everything was going good until I opened and 7 different groups of people came rushing in. I spent the next hour being yelled at, screamed at, threatened, cursed out and treated like less than human.

Not a good day.

I will say the medication was nice in the fact that I could roll it off my shoulders for the most part but at the end of the day, I still went home with that same disappointing sadness and depression that I have known all too well.

Still, I will press on. I am going to try and relax and let this work. I am only 3 days in and have about a month to go. I can only hope that I can get better.

Hug a pony my friends. It may be the only thing going for you at the moment, but grab anything that can help.

Day zero.

I am writing this post in a few separate days as I wont to document my self and questions and thoughts that I am having without having to post it just yet. I feel that doing this will help me get through this week or at least these past few days.

48 Hours remaining:

I am laying in my bed and I can’t sleep. I go to the doctor on in three days for depression. I had swore to myself I would never take any drugs or do therapy with a psychiatrist. I don’t want some head doctor who gets kickbacks from Zoloft to recommend the latest, greatest pill popping solution. I have never felt fear about this like this before. Thoughts race through my head.

What if I get taken away?

What will happen to me?

Will it change me?

How will it change me?

I don’t want to give up my ponies.

Will my friends and family still recognize me?

It wasn’t until about a month ago that I was talking to a friend while working at a convention that I realized what my fear is. It is not the drugs per se, like I thought it was. It was the fear of being fixed. It is the fear that “Yes, I am not well” It is hard to acknowledge that you are broken.

I am still scared.

24 hours remaining:

I am in pain.

I find this a good thing. It is odd but whenever I plan on getting help is when my body starts to do better and makes me second guess myself about seeing a doctor about anything. I got the call to confirm the appointment tomorrow.

I confirmed.

I have had such a rough day. I was woken up by an alarm call at my store at 1 am, requiring me to go check it out. I was trying to go to bed early because of meetings all day the next day. I sat in over 8 hours of meetings, along with a 2 hour car ride to get to said meeting and back. My body has been through so much stress with this meeting (lots of work changes) and with seeing the doctor tomorrow. I have been just holding on.

And then, life happens.

We are during our lunch break when my boss comes up to me and asks if I remember an old coworker. I told him I did but that I hadn’t seen him in about 2 years. My boss gave me his phone and said read this. I read through some messages from an old manager peer who was informing my boss that the employee I knew had committed suicide last week. He had sent pictures from the funeral.

That kinda tumbled my day the rest of the way down the drain.

I am now home, resting, waiting.

This final day of waiting…

Day zero:

I awoke to a knot of anxiety in my chest. Cold sweets and pain are my bed fellows. I have a few hours left. Even now i second guess myself. My throat and mouth are cotten dry. My back aches and groans.

And yet, I still wonder if I should see the doctor.

I am still emotionally with friends who are reeling from the lost of one of us. We all talked about how fine he was when we last saw him.

Suicide is never painless.

Zero hour:

I am in the waiting room. They have just taken my paperwork. There were several times I almost turned around driving here.

My arms locked on the steering wheel.

My breath is erratic.

I am beyond stressed.

Oh, my dear foe. We meet again.

I promise myself, I will not cry.

We have done this dance for 15 years. At last, we will see if I can get some help.

It is time. They have called me. My last feeling is:

Too many to describe. I thought i could find one but i can’t.

Hug a pony my friends. I know mine is clutched tight. I will see you in the aftermath.