The story isn’t over.
The story isn’t over.
One of the hardest issues facing someone with a chronic illness is facing what you cannot do anymore. There is a mourning and grieving process that so many of us face. You go through the Five Stages of Grief. Denial, anger, bargaining, depression and acceptance all rush through you as you mourn the lose of some dear to you. Yourself.
It has taken away my ability to be Jason Bourne. All the action/super hero movies that I watch, I no longer look at and say to myself “I could do that.” I look at trampoline parks that my daughters want to go to for a party and cringe. I feel my body ache prematurely as my wife wants to do a marathon. You dread looking at yard work because you know you will be down for days and not be able to do anything.
Denial sets in when you see life starting to pass you by. You tell yourself to suck it up and do things. You believe what others tell you that you don’t look sick. You listen to what people say when they shout “Why can’t you just be normal.” You push and push to be normal and this makes your condition worse.
Anger sets in because you cannot keep up. You lash out at others who are frustrated with you at not being the person they remember. You scream in your mind that you should be normal and why is this happening to you. The anger rolls off of you in waves, pushing those who try to help you away.
Bargaining comes when you see people walking away who used to be close to you. You start to plead with people to stay. You cling to those last few people so hard it crushes them. You try to keep up and make deals. You try every supplement, exercise, and diet known to man in an effort to make things better. You bargain with yourself that it can’t get worse, but it does.
Depression sets in hard. You see no way out. In the deep hole you have dug, you see what you believe to be your only options. You find yourself trapped and weighed down by your illness. Loneliness, regret, and suffering. You see the bottle, pills or worse as your only way out. You thought at the beginning of all this it would never be this bad. In the general population, suicide is the second leading cause of death for people ages 15-24.
If you are at this stage, please reach out.
Acceptance is the hardest to achieve. You have to fight your body, your mind, doubters, and all the other stages to get here. You have to accept that you cannot do what you could before. You have to grieve the loss of your old self. It can feel a very hollow victory when you still have a life chronic illness ahead of you. I look at these stages and milestones at how far I have personally fought to get over. You have to accept what you are now and that is OK. It is OK that you are sick.
I may never be Jason Bourne, but he is not real. I am. And I am still here.
#hugapony my friends
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I had a recent social media post that was quite touching. I has been a rough time with pain lately and I was needing a boost. I posted a simple question.
This sparked a wonderfully long post with friends and family commenting from all over. I was flooded with memories from childhood, college, present day, all warm fuzzy feelings.
It was fantastic.
As some who has suffered from depression in the past and who continues to struggle with anxiety even now, it was an amazing feeling. The self worth went through the roof. Seeing people post, some I had not talked to in years, was amazing. The love and care that was shared was immeasurable. This got me thinking of what this could do for people who are struggling? I know I pull up the post and have read it a few times since. Seeing the kind, wonderful words brings back the same self-worth growth and warms me inside.
I have seen a lot of suicides in the news lately. A lot of people who are depressed and decide that ending the pain and personal suffering is the best choice. Having been at that end twice now, I know what runs through someones mind. You don’t look upon yourself as a person. You are a burden. You don’t see what other actually think about you. You see a drag on all your friends and family. Your brain tells you that you are not and will not be good enough for anyone.
We need to break that cycle of self doubt.
I challenge you to post this to your social media. Make the post and see what happens. Save the answers you get. Use it as another weapon to fight back the hard times. See what others took the time out of their day to say to you. Smile in the memories shared but not only you but others. Have a written document were people see the value in you. Have yet another tool, like stuffed therapy, to fight back. Even if it is against your own mind.
I will do my best to comment my memory as well.
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
I have relaunch my Patreon. It is now live and active. Please share with will and help spread the message!
Why: This is a way to help support my writings and possible travels for events and panels. I am looking to expand my outreach with stuffed therapy and this will help me reach a wider audience.
How you can help: By donating even a small amount, it will help with upkeep on the blog. I hope to move to the higher tiers of WordPress and add even more content.
What you can get: I have started with some rewards such as a personalized limerick for my $25 backers. If you have more ideas, I will add them!
Add your voice: By becoming a backer, you have the opportunity to add your voice and give suggestions to what you want to see.
I hope to bring more to everyone following the blog! Thank you all for the amazing support over the years and I am looking forward to the times ahead!
#hugapony my friends
I am currently looking into Patreon for the blog. I have tried it in the past and it didn’t work out. I had scraped the project but never deleted it. Patreon has done a few updates for writers and I have once again opened up my page. Here is a sneak preview for you special viewers.
Vacations are fun for a multitude of reasons. Being away from home, feeling special in public, and not having too many responsibilities. For someone with a chronic illness it has an unexpected side effect.
A vacation from yourself.
When you are at home surrounded by people who know you, there is a certain expectation. Those close to you know what you are going through and help out in the areas you are lacking. The flip side of this is they know how you used to be. They remember how you were able to do so many things. This can make things awkward when you are faced with an activity that used to be so simple but now is a task and a chore.
When in a new setting and with new people, there comes an easier understanding. You explain your condition and there is a moment of understanding (for the most part). You are able to be yourself a bit more than usual. You don’t have to hide behind the mask you put up when in pain.
Two main things came out of my vacation in this regard. First, you are able to truly look at yourself and see your condition in a new light. You get to be honest with yourself, in being honest with those around you. You get to see the amount of pain you are truly experiencing instead of trying to mask cover, or make excuses to yourself and those around you. This can be a harsh reality to face.
The second thing I realized was the effect of my condition of those close to me. I know I can get wrapped up in the misery of my condition and not see the reaction of those around me. Those around you are suffering from the loss of an able friend. A spouse who now has to pick up the slack. The brother who is not the superman he once was.
It is very easy to forget that our condition effects more then just yourself and your body. It touched the lives of all those who know you. The suffering reaches beyond your own body. The ones closest to you suffer with you. It is true we have to fight the guilt that is sometimes associated with not being able to do activities with love ones. I feel we tend to forget that those same loved ones are suffering as well.
Take a moment, all you chronic illness warriors, and reach out to those close to you and thank them. Tell them you love them and appreciate all the ways they help you. Remember, a vacation from yourself is not a vacation from those who love you.
I am currently on vacation in Tennessee visiting family. It is a welcome reprieve form life and the stresses in it. We have not had a true vacation in five or more years. This spring break for my girls is their first since entering the public school system. It is exciting to see their minds to take a break and I admire, and am so proud, of how smart they are becoming.
One issue I am having with this vacation is me. I am finding myself not being able to do the activities with others. I am in constant need of more breaks and rest stops. Some times I just need to stop and sit for 20 minutes as my energy levels are too low.
Chronic fatigue hurts.
This coupled with the pain I am constantly in makes it difficult to enjoy some of the exciting aspects of my vacation. I am having to accept the fact that I have more limitations on what I can do. This hurts more than I first anticipated.
Yesterday I went to a children’s arcade/play place with my two eldest daughters and my nephew. My girls had a blast running around in the playground area and climbing the inflatables. They wanted “dad” to run and jump and play. I smiled and did my best, but no where near what I felt I should be doing. It hurt me to tears and not being able to play with my girls.
Today we went shopping. I was the only dad in the group of 6 girls so I ended up with both shopping carts and helped with the lifting and sorting. It was a morning that was already rough due to a fibromyalgia flare up. I ended up sitting more often than not. I smiled a fake smile and pushed as hard as I could through the pain. It wasn’t enough and I felt terrible. I felt guilty at holding the group back, even though I knew I could do nothing about it.
It is a hard situation in the fact that I am suffering from a chronic illness, feeling that I am letting my family down by not keeping up, and then having the guilt and depression from all of it. Constant 24 hour pain and having some seasonal allergies pop up complete the horrid picture. I feel so tired of fighting.
And its not just the chronic fatigue.
I have been reviewing my condition and well-being these past few months. I have looked at my medication and doses and have decided that i am in need of an increase. I have been reviewing how much I have limited myself in lowering my dosage to not have to deal with the pending opioid crisis. I have talked with my doctors at lower it so I am not considered in the “addict” category. I am slowly realizing that this is futile and I need to focus more on making sure that my needs are met.
Then there is the guilt from others at taking a vacation.
Society seems to think that a disabled person is someone in a wheelchair or crutches, barely able to move ever. I have received, for lack of a better word, hate for doing activities that I love that I should not “be able to do” because of my condition. Just because I suffer does not mean that I cannot take a vacation. Do we give up our right to happiness by having a condition that holds us back? This does not mean I get to take a break from my illness. I have suffered everyday of my vacation. I do not get a break from my symptoms. Why must I suffer the feelings of others who feel the need to tell me that I must be faking if I go on vacation. Why add that to someone who is already suffering?
It feels incredibly frustrating.
We try to live normal lives. We deserve to have vacations and enjoy life when and where we can just like everyone else.
This year has turned into quite a roller-coaster for quite a few people, myself included. I , I feel as if we have had nine months of news stories in the span of only 60 days. I know I have had to look for the positive stories more than anything to remain hopeful. I have also worked hard to bring the fight for others like me who are suffering in the opioid crisis. During this time I have been dealing with a long run of fibromyalgia flare ups.
I am hurting, tired, and worn out.
This is a unique time of year. The darker, colder months of the year for the US and this leads to more depression. The break from holidays and the excitement of the new year has worn off for most people. It becomes harder to stay focused and to be able to focus on the positives.
It also happens to be my birthday time.
My birthday is in the beginning of March (actual date redacted). Birthdays were always an old day for me. I have been very blessed with a wife who goes and plans a wonderful day for me. She is quite a amazing at it. I quite grateful for all that she does. There can be one thing that holds me back.
I have to take time every month and access my pain levels, what I can and cannot do physically, and more. It is difficult to look over the past month or two and see where I have declined, what I have done better, and general self care. In doing so, I have found myself in a rougher spot this time of year than most birthdays.
It is difficult to be in a happy time and be brought down by your illness. You struggle and fight to be happy and appreciative. Inside, you are trying your hardest, and want to shout out that it is all amazing. What can escape your lips is far less than what you want to say.
But still I fight. I know many who fight with me. I know many who fight for us.
I want to give a shout out to those who fight to be happy in the bad times. I am proud of you and I believe the world is a better place with you still in it. I want to give a huge shout out to those who help take care of us. You all go above and beyond with trying to show us how much we are loved and do amazing things. You make life worth living for so many of us. You are amazing and strong.
As always, a big shout out to all those who read and support me. I am humbled and honored that you choose to read what I write. You guys rock and make me feel like a rock star.
I ask all of you to give some love and gratitude to those who support you. Sometimes the best way to help yourself out of a hole is to help others. Showing love and compassion will return it back to you.
Thank you and I love you all.
It is an exciting day for me. I wanted to share two important pieces of news.
First, I have been published again on The Mighty.com. I have continued to try and be a voice for the community. It has been posted for only a day now and I already love the response that is coming out. I have had someone ask to be kept posted on finding a new doctor. I have been humbled by how much other people care. I would love to share this blog and my writing to the world. Here is a link to the article.
Second, I have renewed my domain name for the blog. Anniversaries are important. These milestones are road-markers and reminders for us about how far we have made it. It is these points that show us that we made it another pass around the sun. May it be for better or worse, we have survived and in doing so we have shown the world that, while we may go through such hardships in life, we are still going, no matter what tries to hold us down. I love and thank you all for the wonderful support you have shown me this past year and before. I can never thank you enough. I will try and be a voice in the dark, help for the helpless, and your continued advocate and supporter of you as a person.
From the bottom of my heart, thank you.
Here is to next year.
#hugapony my friends