Doctor New

I have had a lot of people ask me about when I am getting a new doctor. I have talked about how my last doctor retired and the one before that gave up on me as a patient. I have been through a terrible run of doctors in my life and they are usually not my favorite people.

Having a chronic illness mess going to the doctor a lot. Having an illness that a third of the medical community believes does not exist, another third that it is a mental issue, and only the last third that it is real is never a fun fight. Also being a guy, being diagnosed fibromyalgia is a an odd one as it effects women much more than men by a margin of 5/1. This is a fight I am used to with having to explain, yet again, that I have this illness and yes I need help.

I did my research on my doctor. Google reviews, doctor review sites, even your own insurance will sometimes have ratings on doctors. I highly recommend to everyone to look into your doctor, see what people are saying about him/her. See if they have dealt with your issue or see the personality of the staff. You have the power to see and choose your doctor. You have the power to find a new doctor. You do not have to stay with a bad doctor. I feel that a lot of those with chronic illnesses feel they have to stay with the doctor that they go to the first time and are stuck with them forever. If you feel the doctor is not listening to you, you can find someone different who will. If you feel the doctor has given up on you, get a second opinion. Find a good one.

I took my wife and baby with me for moral support. I had several panic attacks leading up to actually seeing the doctor. I get worried that he would not listen to me or would, irrationally, make fun of me. I have had doctors tell me that I was imagining things or that I was wrong about an illness and then I was proven right at a later date. I go in early, fill out my paperwork and wait. I am then taken to get my vitals taken and go into the patient room.

The doctor comes in, introduces himself, and asks what is going on. I explain I am due for a 3 month checkup and am due for a refill on my perceptions. I am explain that my last doctor retired and was looking for a new primary. He looked at me sternly and and questioned my medical history. I told him who diagnosed me, how many procedures I have been through, the tests run on me. He watched me carefully and informed me that I was on an opioid and started to tell me the dangers of the drugs I was on and that he did not believe that I should be on them. He said he would need a drug test and a blood test to confirm that I was the one actually taking them and I wasn’t selling them. I said OK as I was taking my medications correctly. He informed me that many people had been dying on the exact medication I was one.

This was not looking good so far.

I was starting to panic because I was feeling attacked. I, once again, was having to prove to another stranger that I was sick. I had been through so all this be before. I was given a cup to pee into and waited for the results. He came in to inform me that the test did not show the opioids I was taking and that he wanted more information. He asked for the names of all the doctors I had had, where their offices were at, who gave me the actually diagnosis. I grew frustrated. I give him all the info I had. He said the nurse would be in for the drug test in a min and gave me the physical exam. I winced and groaned as he pressed and push on the points of tenderness and he seemed surprised. He poked like someone who was expecting not to find something. He pressed a lot harder than I expect at first and then he realized he was hurting me. He had me sit up and left to get the nurse for the drug test.

I was embarrassed at all this. I was angry. I complained to my wife. I was frustrated. She gave me some amazing clarity. She told me to stand in the doctor’s shoes. I was a new patient, with an uncommon illness, asking for a drug that he believed to be dangerous, coming from a doctor who “retired” and had a urine sample that showed I was not taking  my medication. She asked if I was in his shoes if I would be suspicious. I said she had a point and kept pushing through.

My blood was drawn. I hate this more than anything. I had a nurse once hit the nerve in my arm and my arm went numb for almost a week. This nurse had to go get someone else as well making it last even longer. Then they had to switch arms. I struggled with it all and squeezed my little Fluttershy plush hard.

The doctor came back in and told me he was able to pull some of my records. He was going to refill my medications but that he wanted to go through the active medication list as it had some discrepancies. Evidently it showed multiple duplicate medications. I cleared them up and was gave information on each on and what had happened.

The doctor finally showed some compassion and started listening to me. He asked to hold the baby and started asking questions instead of demanding them. Hr told me that my medicine was not what he wanted me on but he wanted to try a new one to help ease the inflammation as he thought that it would help me a lot more. He was surprised that no one had tried it before. He agreed that I should have my doses increased as I was having more pain and needed more help.

We finished up, got my paperwork in order and I thanked him and left. I thanked my wife for giving me clarity and calling me out on being too judgmental. We talked about how organized this doctor was and how I had so many red flags that probably set off alarms all the way to Washington, DC. He had refilled my prescriptions, even if he didn’t agree with all of them, and had given me a new one to help me out.

We both had prejudices that we had to overcome. I was forced to look at the other side. It is always interesting walking in someone else’s shoes. I know I can get wrapped up in my own prejudices when it comes to my illness. I am glad I overcame them.

#hugapony my friends

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Still fighting.

I am so tired of fighting. I fight my body each and every day. I fight to get out of bed. I fight to take my pills. I fight to get the energy to even move off the couch. I spend so much energy on just making it through the day. Now, I have even more to fight.

The opioid crisis.

I have been on my medication for over three years now. I have been steadily dropping the dose in order to not raise so much attention as to how much medication I take. This helps prevent the pharmacy techs not look at me with quite the judgmental eyes. I am on a third of what my medication should be. I do this at the cost of my own personal comfort. I trade my comfort and ability to be somewhat normal so I don’t have to be judged on what medication I have to take and how much.

I am entered on databases. I have to sign a controlled substance sheet now to document how much I have. I have to have my drivers licence scanned and copied. I am monitored on my usage. It reached a new level today.

I found out my doctor is retiring in a few weeks. It is always hard finding a good doctor. Someone who believes you and still finds ways to motivate you.  Someone who cares and wants to help your well being. This is not a great time for me.

I called to get my last set of medication from my doctor. I am trying to prepare for my search for a new doctor. I call in to the pharmacy and request a refill. They deny me saying I need to call my doctor to get approval. I call my doctor and they fax everything over. Call back to the pharmacy and they say that they don’t have any paperwork. I ask them to check again and give them the exact name and dosage of the medication. They then say it has been denied by my insurance. I tell my information again and that if need be, I’ll pay for the medication out of my own pocket. They then say I have been flagged for to much medication and that I need to use what I have left.

I have two pills.

I inform them again that my doctor is retiring, I have only two pills left of the main medication (an opioid based med), I will pay for it if my insurance won’t, that he faxed the information yesterday at 4 pm, and what should I do in time being without my medication. The pharmacy tech informs me that I have been denied and flagged by a government system that says I am receiving too much medication but that he will resubmit my information again to see if he can “push it through.”

It goes through.

My medication will be filled and waiting for me later this afternoon. My fears of what waits for me next time I need to get a refill are very real. I fight so much to just exist in a a relatively pain-reduced (I am never pain-free) world. Why must I fight bad doctors, bad pharmacies, and now the government tracking me?

I am so tired, and it is not the just the fibromyalgia and chronic fatigue syndrome.

I just want to get the help I need. I just want people to believe me. I am almost to the point of begging for help at times because people don’t seem to care. I wish I could explain it better. I wish I didn’t have to fight. Hell, I wish I didn’t have this chronic illness and had to take medication with the wonderful side effects. I already have such a love/hate relationship with having to take it, why must it be made worse with fighting to even receive it?

This is my story. This is my life.

Still fighting.

Its probably going to be on my tombstone.

#hugapony my friends.

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.

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.