Ray Wood

@raywood | contributor
I have done some professional writing for Travel publications and for advertising copy. I also have been a managing editor for a travel publication but I have never attempted to publish any of my personal writing. I have found that readin and writing others peoples work and my own have resulted in some of my best insights. I belong to several Support groups through Facebook and many have commented how much my writing had impacted them. I also would love to be a part of a new community that is supportive of each other's writing. I have been dealing with a rare disease called Dercum's Disease and it took me a long time to get to a diagnosis so I have experienced a lot of health care difficulties. I have worked in practice management and provider development so have some experience with medical providers, which I have found to be helpful to others.
Ray Wood
Ray Wood @raywood
contributor

Male Rape Survivor Explains Dissociation

I sat in a tree covered with a light that was the best warm feeling I have ever felt. A boy staring down on the man abusing my shivering cold body slowly being choked out of existence. I left the house early that morning, before everyone was awake. I grabbed my fishing pole and headed to the lake where I spent most of my time trying to avoid an abusive home. I often went places alone at a very young age. I loved the lake and it represented a little known freedom, a place where I could just be without the fear of being a child in a home where abuse was common and violence was metered out swiftly. What wasn’t aimed at my body was aimed at my mind. Both have left me scarred. There were no cars out and no people around, and still kind of damp from the fog that hung in the air when I arrived at the lake. I often went fishing by myself in the morning prior to my friends getting there later in the day. I seldom brought bait with me, I could catch grasshoppers or dig up wigglers, catch crickets or catch minnows, which were considered the best bait because they often resulted in the biggest fish being caught. So this morning was no different except that the moisture in the air was very heavy so the grasshoppers were not jumping and the worms were deeper because of a slight chill in the air. I felt him before I saw him. My friends and I often fished in this smaller pond just beside the main lake and I was trying to cast into the spillway tunnel. The darkness was a haven for fish and as I leaned over to make the cast something told me to look up. As I did I saw a young man wearing a speedo, which was strange since it was a little cool out, but I swear I felt a chill as soon as I saw him. He was heading in my direction and I stopped casting as he approached. He asked me what I was fishing for and I told him. He must have known I was frightened because he moved away from me. I continued to fish and although he had moved away he had positioned himself in such a way that I would have had to pass him to get up to the dirt road that separated the pond from the lake. I would catch a fish or sling my bait then have to find another and begin to work the grass for grasshoppers, which were few that morning. He called out to me, “Are you out of bait?” and I could barely speak when I said I am out of bait. He came over closer to me and said, “I know where there is a small pond full of minnows. I can show you where it is.” I said, “Maybe later,” but he continued to pressure me and I knew in my heart that either way I was going to have to go with him. I began to shiver very hard and became cold and realized how wet I was from the fog. I made it up to the dirt road and he was right behind me, I could feel him breathing and seemed like I could hear his heart beating loudly as he pointed down the road and said, “It’s right down there, just down the road a little.” I walked along in slow motion so frightened, so cold, not really knowing what was coming and really at 10 or 11 it never occurred to me just how bad it would become. He said, “Right down there, follow that trail and it leads to that pond.” I gasped for air and knew I had to go down there and so I did. He followed me down the trail through the high grass and into the woods, and just as I was turning around to tell him there was no bait down here, he grabbed me and wrapped his hands around my throat. The chill became a violent shaking as he held me by the throat, slightly choking me and breathing into my ear, “Take off your pants or I will kill you.” After two more chokes I did. He put his weight on me and forced me to the ground. I shivered on the ground being raped and feeling so cold and alone, he began to choke me harder and I could not scream anymore. This continued and I woke up in the tree beside this horrible scene, filled with warmth and love and realized for the first time that maybe I was dying. I looked down with an empathy I did not understand, not just for that body that was me but also for the person raping and killing me. Somehow I knew it would be OK and that I was truly loved, not some trick to hurt me, but a true feeling of warmth that was love to me. I continued to cry as I sat up on this branch looking down. I felt bad for my life and wondered why I had not known love without violence. Then wham, I am back in my body. He made me get into the water where people went swimming and I stood in the lake shaking, freezing, teeth clicking and terribly cold. Then that warmth returned again and I heard a motorcycle coming down the road toward the swimming hole. I may never know what lifted me, but something did, and I was up and out of the water running toward the motorcycle and freedom. I told the young guy on the motorcycle, probably a teenager, that the guy down there had hurt me and before I could ask he said get on and I did. I grabbed around him and held on so tight I am surprised my angel could breath. He dropped me off at the store and I ran the rest of the way home. I never told anyone back then because I was afraid of many things. I remain afraid to this day, although I have admitted what happened to a family member. Then I began admitting it during counseling, but I have never told anyone exactly what happened. Now I am in my early 50s and I still struggle with that day. I have never gotten over it and I have never felt that warmth again, although I have been desperate for it. That warmth rescued me and in some ways tortures me. I try to be OK and live my life by putting that stuff away, but the terrible truth is that box that I stuff that memory into leaks and to this day the smell of rotting leaves can devastate me for weeks, a certain kind of damp foggy morning can turn me into a shivering 10-year-old desperate for that warmth that saved me, but forever knowing it won’t come.

Ray Wood
Ray Wood @raywood
contributor

Male Rape Survivor Explains Dissociation

I sat in a tree covered with a light that was the best warm feeling I have ever felt. A boy staring down on the man abusing my shivering cold body slowly being choked out of existence. I left the house early that morning, before everyone was awake. I grabbed my fishing pole and headed to the lake where I spent most of my time trying to avoid an abusive home. I often went places alone at a very young age. I loved the lake and it represented a little known freedom, a place where I could just be without the fear of being a child in a home where abuse was common and violence was metered out swiftly. What wasn’t aimed at my body was aimed at my mind. Both have left me scarred. There were no cars out and no people around, and still kind of damp from the fog that hung in the air when I arrived at the lake. I often went fishing by myself in the morning prior to my friends getting there later in the day. I seldom brought bait with me, I could catch grasshoppers or dig up wigglers, catch crickets or catch minnows, which were considered the best bait because they often resulted in the biggest fish being caught. So this morning was no different except that the moisture in the air was very heavy so the grasshoppers were not jumping and the worms were deeper because of a slight chill in the air. I felt him before I saw him. My friends and I often fished in this smaller pond just beside the main lake and I was trying to cast into the spillway tunnel. The darkness was a haven for fish and as I leaned over to make the cast something told me to look up. As I did I saw a young man wearing a speedo, which was strange since it was a little cool out, but I swear I felt a chill as soon as I saw him. He was heading in my direction and I stopped casting as he approached. He asked me what I was fishing for and I told him. He must have known I was frightened because he moved away from me. I continued to fish and although he had moved away he had positioned himself in such a way that I would have had to pass him to get up to the dirt road that separated the pond from the lake. I would catch a fish or sling my bait then have to find another and begin to work the grass for grasshoppers, which were few that morning. He called out to me, “Are you out of bait?” and I could barely speak when I said I am out of bait. He came over closer to me and said, “I know where there is a small pond full of minnows. I can show you where it is.” I said, “Maybe later,” but he continued to pressure me and I knew in my heart that either way I was going to have to go with him. I began to shiver very hard and became cold and realized how wet I was from the fog. I made it up to the dirt road and he was right behind me, I could feel him breathing and seemed like I could hear his heart beating loudly as he pointed down the road and said, “It’s right down there, just down the road a little.” I walked along in slow motion so frightened, so cold, not really knowing what was coming and really at 10 or 11 it never occurred to me just how bad it would become. He said, “Right down there, follow that trail and it leads to that pond.” I gasped for air and knew I had to go down there and so I did. He followed me down the trail through the high grass and into the woods, and just as I was turning around to tell him there was no bait down here, he grabbed me and wrapped his hands around my throat. The chill became a violent shaking as he held me by the throat, slightly choking me and breathing into my ear, “Take off your pants or I will kill you.” After two more chokes I did. He put his weight on me and forced me to the ground. I shivered on the ground being raped and feeling so cold and alone, he began to choke me harder and I could not scream anymore. This continued and I woke up in the tree beside this horrible scene, filled with warmth and love and realized for the first time that maybe I was dying. I looked down with an empathy I did not understand, not just for that body that was me but also for the person raping and killing me. Somehow I knew it would be OK and that I was truly loved, not some trick to hurt me, but a true feeling of warmth that was love to me. I continued to cry as I sat up on this branch looking down. I felt bad for my life and wondered why I had not known love without violence. Then wham, I am back in my body. He made me get into the water where people went swimming and I stood in the lake shaking, freezing, teeth clicking and terribly cold. Then that warmth returned again and I heard a motorcycle coming down the road toward the swimming hole. I may never know what lifted me, but something did, and I was up and out of the water running toward the motorcycle and freedom. I told the young guy on the motorcycle, probably a teenager, that the guy down there had hurt me and before I could ask he said get on and I did. I grabbed around him and held on so tight I am surprised my angel could breath. He dropped me off at the store and I ran the rest of the way home. I never told anyone back then because I was afraid of many things. I remain afraid to this day, although I have admitted what happened to a family member. Then I began admitting it during counseling, but I have never told anyone exactly what happened. Now I am in my early 50s and I still struggle with that day. I have never gotten over it and I have never felt that warmth again, although I have been desperate for it. That warmth rescued me and in some ways tortures me. I try to be OK and live my life by putting that stuff away, but the terrible truth is that box that I stuff that memory into leaks and to this day the smell of rotting leaves can devastate me for weeks, a certain kind of damp foggy morning can turn me into a shivering 10-year-old desperate for that warmth that saved me, but forever knowing it won’t come.

Community Voices

The Bed

I lay here avoiding it all, one more day, one more moment, awash in fear. I lay here again hiding from the world, seemingly timeless, seemingly tireless, the bed is my hiding place. I don’t, I can’t face another moment, I lay here avoiding it all. The bed is warm and welcoming, free of conflict, free of fear, free of confusion, free of life. I lay here again avoiding it all, putting it all off, right or wrong here I lay.

I know I might miss an appointment or paying a bill or talking to you. Here I lay without a care of the consequences, yet knowing this will cost me. More apologies await me, I am sorry I missed your call, your email your text. I am sorry, I was sick, I overslept, my phone ran out of battery and I was not aware. The truth is I lay here in bed avoiding you, it’s not personal though I was avoiding everything, and everyone.

I lay here avoiding it all, one more day, one more moment, awash in fear. I even avoid myself, maybe more than anything else I avoid myself. I can’t do it, I won’t do it, I don’t know how, I don’t understand. I lay here in bed feeling terrible that I avoid everything, I don’t want to live this way yet here I lay.

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Community Voices

That feeling

I am standing in a line at the grocery store, and as these things go grocery stores are difficult, when out of the blue a child is crying at another register and that feeling in me starts.

I get that feeling just at the edges of my awareness, steadily creeping around my chest. I know what it is and I know that my mind screaming at me to get away, to leave my groceries in the cart and get away before I die.

My breathing starting to get shallow, while the child In the next Lane is crying louder, my mind screaming at me, ” get away,” as I feel that pain in my chest start and my chest tightens, and then it happens I smell rotting leaves.

I know that none of this is real but still I smell those rotting leaves and now my stomach is starting to cramp and I feel the beginning of that terrible urgency to poop, and still the child is crying only now the parent is engaging the child.

I feel my heart pounding and my body getting ready to be assaulted and I am thinking, “okay rescue that child,” my mind and body poised to jump and all of the sudden I hear the child beginning to stop crying my mind spinning and then I am just left with that feeling.

That feeling might leave me but it might not. That feeling makes me angry and sad for myself. The smell of the rotting leaves starting to become faint as I stand there in line with less then a few minutes have gone by and I am left knowing that feeling will be back.

Community Voices

I have a #RareDisease that includes having painful tumors all over my body. These tumors come in all different shapes and sizes, and often become involved with vital organs. Dercum’s disease/ DD is progressive and there is no cure. DD often leads to a loss of all mobility and there is a spectrum of symptoms involved including:

Pain: The presence of pain is a requirement for diagnosis. The pain may be in the lipomas, in skin (hyperalgesia), or
sharply referred. Pain in one area one day may be gone the next and other areas may become painful. Some areas that

are painful for years can become numb. Arthralgias and myalgias are common. Over time, the pain is disabling.

Metabolism: Oxygen consumption per kilogram body weight in women with DD is lower than in controls matched for
age, weight, body mass index, muscle and fat mass. Fatty acid desaturation in SAT is lower in people with DD. The fat

also does not respond normally to norepinephrine and insulin, and glucose conversion to neutral glycosides is reduced.

Co-morbidities: Hypothyroidism, #Diabetes, autoimmune disease, #Fibromyalgia.

Common symptoms: Sleep disorder, anxiety, #Depression, cognitive difficulties (brain fog), tachycardia, shortness of
breath, gastrointestinal disturbances. DD is similar to fibromyalgia but with the addition of painful lipomatous SAT.

Serious Rare Complications: Blood clots, fat emboli, fatty heart,11 early cardiovascular disease, and #Lymphedema.

This above list is a general list and not meant to represent all of the symptoms or comorbidities.

Currently, there is no cure for Dercum’s Disease. Treatment consists of addressing symptoms and pain management.

Anti-Inflammatory diet
Comfort and Mobility aids needed for activities of daily living
Hyperbaric Chamber or Cyclic Variations in Adaptive Conditioning™ (CVAC™)
Liposuction and excision of lipomas (lipomas may reoccur and
increase in number at excision site)
Manual Lymphatic Drainage (MLD)
NSAIDs (limited benefit)
Opioids
Warm water exercise or other low impact activity
Weight reduction may reduce joint pain

Contraindications Some things that may worsen Dercum’s Disease symptoms are: strenuous physical therapy/exercise, repetitive motions, lack of sleep, poor diet, surgery/anesthesia, steroids, trauma and stress.

Dercum’s Disease shares a lot of rare diseases and the difficulties that anyone with a rare disease deals with. I encourage you to ask more for help and information. I am very active with the Fatty Disease Research Society and with multiple support groups.

Community Voices

Help Wanted

What no one tells you when you are having health problems that cause Fatigue, brain fogs, crashing fatigue, or any number of health issue that make living difficult, is that nothing stops. Your children need to be fed and managed even if you have a teen like I do. You have to clean up, you have to cook, you have to make sure homework is getting done, laundry is piling up, the toilet is hitting the bowl optional, groceries need to be selected and bought, the list goes on and on.

There is also another issue You have to make calls for your medical care, you have to go to appointments, you have to get to the appointments, you have to follow up on any number of preauths, insurance problems and frankly just being able to make and keep all of the appointments related to your health and #Disability.

I need help and you will too, the only thing is that you can’t get help, and if you have a disability that rises to SSDI level you better not do anything. Even good doctors will be hesitant to help by signing or documenting your disability and there is not anyone that will help or speak for you. Health Care is a tricky thing that often is very complicated and often requires you to make calls, do paperwork, and battle your insurance for your rights that should be apparent or at least easy to take care of.

We need help, there is no one set up to help you through any of the hurdles I listed. There needs to be someone devoted to case management for our health care. There needs to be someone that helps you contact community organizations for help. There needs to be someone to come in and help with cleaning and everyday types of needs, but unless you have Medicare there is no one and even if you have Medicare or Medicaid it is hard to get case management, social work and in home care and even if you do it is limited at best and worthless at least.

I need help and I bet you do too!

Community Voices

Your A Pain

Probably we all face someone or multiple people in our life who is a pain. These people doubt everything that is wrong with us. they often are people in our family and they often get an audience with other family members. They have probably not read anything you have sent them to help friends and family understand. They often are the first to try and shoot down our wins and are often the negative voice you here in other friends and family. These people stand against The Mighty that is you and by spreading such doubts their life is worse.

Well guess what? You have unbridled power ! You have been in a #RareDisease battle for your life and you are still here to read this and to tell others your story attempting to help others in the process. Feel sorry for these miserable lonely people who try and make your experience less than what it is.  We are here and somehow we have managed to continue under sometimes desperate circumstances. These things equal personal strength and these negative people in our lives have great difficulty reaching out openly. The fault is not yours, we are strong and have a strength that insecurity finds very difficult so that brother or sister or parent or whomever is the person that is always doubtful about your actual disease state only has what power we give them.

So I suggest that we give them none of our strength until they reach out actually and I say to you that they will reach out honestly. I am going to suggest a novel way of handling these people that doubt you.

1. If you feel bad do not call them.

Seems surprising that I would offer what seems like simple advice, but how many times have you found yourself feeling terrible and in a conversation with these non-supportive people. I often found that I was in a way self harming by calling one of these people that I already knew what there opinion is, and it is always negative. When you are feeling really bad whether it is physical or mental, which by the way is typical for me that if I feel bad physically the mental part is right behind it or vice versa.

2. When you are feeling good do not call or text these people.

Again it seems like simple advice but I say listen to me and when you are feeling better or somewhat decent never talk to these negative people in our lives. These people love to make us feel bad, literally they feed of our energy, because they are so broken that they do not develop energy like we do. We are full of strength and these energy vampires just love to feed off of us and what seemed like a decent day always ends up bad when we give these people our power by talking to them when we feel good.

3. Always have a scheduled out.

When you go to family things and one of these people is a family member, remember that you have the best out in the world, you don’t feel well, and bang you are out of there. I always go into these things telling people I have to be somewhere and I stick by it.

4. At family gatherings never approach the negative person.

You will be amazed at what happens when you force them to approach you or not speak with you. You keep your power and they have no control of how you feel. I often found that by forcing them to approach me that somehow the truth comes out which is that these people have absolutely no control over me and us.

5. Never ask another person to keep anything from this person.

Probably you find that in conversations with friends and family you make statements like, “keep this between us.” This never works and frankly sets up your friends and family for a negative, losing proposition. It is like telling a child there is candy here but do not eat it. These supposed secrets just never work and if you think about it, aren’t you really saying tell the negative person?

6. If they call you say I am working on something and when they say let’s talk later say,”No, I can take a few minutes now.”

Again this seems simple but statements like this establish immediately who has the power, without you have to trying to maintain control, which by the way, unless you establish your power position, it is immediately lost and i bet if you are like me you end up feeling like “what just happened.” Also this works great because you always have an immediate out.

7. Give yourself immediate outs.

Like the trick I mentioned in # 6 practice things like I am expecting a call or I am cooking. I think you canall see what I am saying, give yourself out’s and in a subtle way maintain your power.

8. Never bring up your Rare Disease or #MentalHealth disease, to them.

These Negative people will never understand and they will always act like you called them or are talking to them for answers. Negative people in our lives will always say the worst thing or the absolute last thing you want to hear. You are like the straight person in a comedy duo and you just set up the punchline. Much like that term what they say feels like a gut punch. Just avoid these situations completely and don’t bring up your health problems to them.

I want all of you who read this to understand that you are all powerful people and with power comes the people in our lives that wants and craves your power. I want to warn you just like I would warn you about a thief, because these negative people in our lives will steal any feeling of wellness you have. As sure as the sunshines if you lose control to these people they will hurt your feelings and more than likely have been hurting you for years. I also want you to know that for most of my career I was in sales of one form or another, it might have been labeled marketing but it was all sales and I was pretty good at it before I got sick. I learned some of these tricks in sales with powerful people who are always seeking control.

Remember you are powerful and are surviving in the face of dealing with a Rare Disease. You are powerful and you can do anything you set your mind to. I care about you even though we don’t know each other I am forever rooting for you, you got this!

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Community Voices

Survivor's Guilt Optional

I grew up in a home with severe abuse and as probably all of you who are survivors remember that there were terrible choices you and I were forced to make. In my situation the abuser often , but not always, would be sated with one violent moment. So my mom, sisters and I would find ways to quench his thirst for rage and violence in a way that did not involve someone getting more seriously hurt or being able to avoid one of us who was fragile at the moment from being attacked. Sometimes the choices were less altruistic  and more related to your own demands. Like if I chucked one of my sisters under the bus and knowingly placed them in a position to be the brunt of his anger. These choices were always more painful and came with a price that is still being paid.

I have found in my life that the pain of the abuses I suffered directly were always the easy ones. It’s the times when my mother was his object of rage or my sisters squirming to keep his hands away as he would pull them lovingly onto his lap. These are the tough moments I still deal with today, somehow I still feel shame for what I did not do, what I could not do, is what always haunts me the most. Deep down you know you were powerless to affect any real change over a psychotic rage. It was never my fault and my blame is never some weepy moment when the latest counselor comes up with their own moments of supposedly heightened clarity that really you had already touched as a child. You are not to blame, well of course not, but as a boy who grew into a man I always somehow felt I could have done more.

Now I find that as a male that somehow I should have made an heroic effort to stop what was happening right in front of me. I should have been a “Man” and stepped in to help. In my mind through today’s eyes I see these nightmares taking place in front of me as a man, not the frightened boy I really was. Oh sure I had no control and of course nothing I would have done could have made any difference, I still wonder what if, but I mostly know that what ifs are always misplaced and my survivor’s guilt is optional. We all survived it in my home , but the price is still being paid. With each of us damaged in multiple ways and our survivor’s guilt not being so optional.

Community Voices

Things I hate hearing from Doctors

There are certain things that doctors say that just drive me nuts. This is a list of things I dislike hearing from doctors and my responses if I have one.

1. You need to lose weight or if you lose weight I will help.  I hate when doctors say lose weight it is empty and useless, so the next time ask how they can help, put the oness back on the doctor or medical provider and say one of the most effective responses I have developed, ” How can you medically help me to lose weight?”

2. That Shouldn’t hurt, this is another doctor/medical provider favorite that is one of my least favorite things to hear. Again I respond bu asking seriously, ” what do you think medically could cause this to hurt.”

3. Your Blood Pressure is too high. Of course it is, I am nervous dealing with doctors because of statements like that , lol. Also I am not sure that the 50yrs old cuff is working right.

4. Get this bloodwork done and we will see you in a few weeks. So essentially there is nothing much wrong but enough wrong that you think I need to get bloodwork.

5.Another favorite is when they write you a prescription for something listed as being an allergy. Happens all the time, I can’t take steroids but they sure want to prescribe them to me.

6.  We need a urine sample, I swear some doctors just get paid by the labs,. First off I think it is unconstitutional for doctors sample randomly, Secondly I am just supposed to trust your dipstick or the lab you ship it out to. Unless it is directly related medically you don’t need it.

7. What on earth do you need my social security number for and if there is really a need why do you then need it on every form,

8. We are not sure what is wrong but we are writing you a prescription for an antibiotic, GRRRR I hate this and Frankly have a collection of antibiotics just in case the Zombie Apocalypse happens.

9. We will need a manual examination of your prostate. Well guess what it ain’t going to happen you are not sticking your gloved anything up there.

Community Voices

To refill or not to refill this is the question.

I am nearing the time to refill my prescription and I wanted to see if any of you struggle with the idea of getting off of your pain prescription? I find that even though I have pain and I remember what the pain was like prior to getting prescribed pain medicine. I am more and more regularly questioning myself on the need to continue taking pain medicine.

I have been finding the process of obtaining legally prescribed much needed pain medicines as dehumanizing. The Veterans Administration will not fill any more pain meds for me. My doctor and her nurse both told me to get the prescription they would not fill from an outside pharmacy even though the #Pain Management doctor the VA is sending me to prescribed me these medicines.

The whole process with the #VA has gotten so ugly and mean that veterans all over the country are making horrible choices for pain relief with many self medicating using illegal substances that can kill or using alcohol which slowly destroys their bodies. I will not ever go that route even though I have a #Rare #Progressive disease #Dercum’s disease that is medically known as one of the most painful diseases there is.

I have to admit that there have been times when #Suicide has crossed my mind in part for pain but also for other reasons. I am finding that when I start to get low on my pain meds I often start to titrate myself and start thinking maybe I should just quit taking opioid pain medicine all together. The next step they want to take is to put me on an internal pain pump. Which will still leave me physically dependent on #Opioids.

I don’t know what I will choose to do this month when I know already the pharmacy and probably Medicaid will hassle me about filling since I could not get the VA or a private pharmacy to fill anything for long acting, so with the doctors knowledge we upped the dose and the prescription will need to be filled sooner than it should be based on one prescription rather than the two he wrote for. Anyway I am not sure but I am so tired of going through this. Please forgive me I know some are doing this much more frequently than once a month.

P.s… Why do doctors write prescriptions to be filled on a weekend rather than a week day? They have to know it is harder on a weekend since doctors can’t be reached on weekends.