Monday, May 23, 2016

What If No One Had Ever Heard Of Cancer And Would You Treat Me With Concern If I Were Pushing Around An IV Pole?

Can you think back to a time when no one knew what cancer was, me either because as long as I've been alive awareness of cancer and a search for a cure has been a focus of the public? But can you imagine if your loved ones were sick with cancer and you had never heard of cancer, would you be afraid of them, would you abandon them, would you be frustrated with them and tell them it's all in their head, would you tell them they'll have to do things on their own and would you not pray for them? Of course not and the reason is because we have all heard of cancer and we know what it can do to a body.

People raise awareness for illnesses that don't have a cure so why don't all the illnesses in that category get awareness shoutouts? I happen to have four illnesses that have no cure or treatment. This is the case with patients that have Ehlers-Danlos Syndrome, it causes other illnesses that have no cure or treatment so dealing with everyday life becomes impossible at best on many days, however; we have some type of strength inside of us that we just keep on taking each day as it comes.

I have often been told that people don't understand what is wrong with me because they know I have something that they have never heard of before and because people are afraid of the unknown often times questions are not asked for better understanding. I have often also been told that if I were bald and pushing around an IV Pole that people would be bringing me potluck dinners and praying for me. Well, that's the truth as I have seen it first hand with family and friends who have had to fight through cancer.  Guess what?  I do push around and IV pole 18hrs a week while I get IV fluids to help my body think that it has more blood, since I have up to 15-20% less blood than the average person. Tricking my body into thinking that it has more blood help my heart not have to work so hard to pump blood through my body that basically flows backward because of EDS which has caused a condition called Postural Orthostatic Tachycardia Syndrome. I also get IV's three days a week because EDS and POTS cause me to be chronically dehydrated and the fluids only help me for about 24-36 hours before I need more. IV fluids also help me deal with Mast Cell Activation Disorder so I am able to put a band aide on three different problems that have not other treatment although the IV's are not really a treatment since treatment is something that will cause the problem to go away. 

Getting IV's puts me in an infusion room where I see all kinds of illness from infection to liver and kidney failure and cancer and myself with only one other person that I have met in three years with the same conditions as myself. I have seen 100's of people come and go through the infusion room in these past few years and I have made and lost many friends to cancer and other illnesses during this time. I by no way want to belittle the impact that cancer has on a person or a family. I have learned through these past few years something about cancer compared to all the other illnesses I have seen come through the infusion room. 

A few lessons that I have learned: 
1. Cancer has no age restriction, 
2. The majority of the cancer patients that I have met have never dealt with a lot of illness and lots of them are experiencing illness for the first time in their lives, 
3. For the most part, a diagnosis of cancer lets you know at the beginning of your treatment what your possible outcome will be and how well or not you might handle that treatment, 
4. People hear the C word and they come running out of the woodworks to help you out, cleaning for the patient or family, cooking for them, driving them to treatment, sitting with them through treatment, bringing them lunch at treatment and all sorts of things that are needed when you are stuck at the hospital getting treatments, I rarely ever see someone with cancer coming into the treatment room completely alone, 
5. Friends and family post all over their facebook pages to please pray for the patient and please spread the word to help to find a cure for cancer, 
6. Pastors sometimes come to the infusion room to pray with their patients, 
7. Nurses in hospital settings are more sympathetic and empathetic to patients with cancer than other illness that brings people into the infusion rooms, 
8. Cancer patients can have really bad days during their treatments where they feel just their worst, but so do the other patients in the infusion room, 
9. Cancer patients who have not dealt with illness have a hard time dealing with their cancer because they don't know what it's like to have their lives interrupted with doctors appointments and infusions and accepting people helping them with everyday life, 
10. Everyone in the infusion room wants to talk about their illness and once the cancer patient has shared about their illness they then ask me about mine and when I explain just the EDS part and not even getting to the 25+ other illnesses that I have because that's what EDS gives you,  they begin to feel better about their journey and they ask who helps me with life and I respond no one, then they are really encouraged to see me helping myself in the infusion room to the restroom, getting my own lunch and blankets and that fact that I am still smiling and telling jokes, they almost always respond by saying that if I can do what I do then they can make it through what they are going through. 

As much as I hate that anyone has to go to the infusion room for anything, I am glad that I can encourage others and I'm also glad that EDS patients are really good at hiding what is going on inside physically and emotionally. If it weren't for that strength or maybe sometimes it's a weakness, my gig would be up and I would not be encouraging anyone. 
The person with Ehlers-Danlos has lived their whole lives being strong and has multiple things wrong with them, not just one diagnosis, and the EDS patient is very apt at accepting help, if it is ever offered which doesn't happen much in the EDS world at all because people don't understand the pain that comes with it and the fatigue, and the EDS patient lives their lives around doctor's appointment schedules and does so alone, driving themselves and coming home so exhausted, not only from chronic fatigue but also chronic pain that never leaves, that they will often have to go straight to bed without the laundry getting done, the trash being taking out, or a meal prepared for them but yet EDSers get right back up the next day and do it all over again and again learning how to ignore what needs to be ignored, (those things that drive a person crazy like a messy room) and pay attention to the important things like how to walk across the room and not dislocate something.  

Many will say that at this point I am just complaining and to you it may seem so. To me, I am just stating the facts and telling the truth. I have learned a lesson in this as well, many people cannot handle hearing the truth so instead of saying something simple like I'm uncomfortable hearing about how hard your life is" or "I'm scared for you and don't know how to help you", they cut you off and tell you to get it together and stop complaining...... oh sorry, just a jogged memory there....   If you happen to be one that doesn't understand chronic illness then this may seem harsh of me to say or you do just think I am complaining then I would suggest that you need to take a long look at your day to day life and pay attention to the things that irritate you or that you get upset by in your life and imagine yourself going through your day with one foot and a hand tied behind your back and see how much you can still do and look at yourself in the mirror at the end of the day and see if you have a smile to offer to someone or an encouraging word. A life with Ehlers-Danlos Syndrome is not for the faint of heart or the weak in spirit. If nothing else then let those of us who have reasons to be patients in an infusion room encourage you to not take yourselves so seriously.   

 I have been posting a lot of things about Ehlers-Danlos syndrome this week and that's because it's Ehlers-Danlos awareness month. I'm doing this obviously to raise awareness because it is a rare disease that many people have never heard of, including doctors. I am not posting things about Ehlers-Danlos syndrome for someone to feel sorry for me but rather I want to raise my voice that Ehlers-Danlos is real and it changes your life and it can rob you of your future. I don't like to ask for help and I get embarrassed having so many illnesses. I come from a family of overcomers and you just don't let illness keep you from things, but that is impossible with EDS and so I am admitting that I am not an overcomer when it comes to EDS, and I do have to ask for help. So I am asking, could you please share this blog or the video in this blog or even just the name EHLERS DANLOS SYNDROME with someone in your life today to help spread awareness about this illness that destroys lives, it kills, it robs and it tears families and friends apart. It's not the type of illness that gets it's victims help and support and acceptance and world wide prayer chains started, and kindness, and home health care and disability coverage and national campaigns and so the list goes one but it is the type of illness that needs all of these things and much much more.
This woman's story is the story of all people with Ehlers-Danlos syndrome.

Most people with Ehlers-Danlos syndrome do have heart defects like she does, I myself have a hole in my heart along with four other heart defects.

Most people with Ehlers-Danlos syndrome have to give up activities and social events, I myself have to sit out many times when my friends gather.

Most people with Ehlers-Danlos syndrome cannot do what they used to anymore, I myself can no longer play the piano or play my saxophone as it hurts my hands and arms and back too much to sit with my instruments, this is very sad to me as my music was a way to express my feelings and to worship God with the talents he gave me, I myself can no longer hold a book to read, it hurts my hands they cramp and sometimes my wrists dislocate or a finger will dislocate while holding the book. My favorite book of all I can no longer hold which is my Bible so I don't carry it to church with me when I feel well enough to attend, I take an electronic Bible.

Most people with Ehlers-Danlos syndrome are not believed, I myself was told that it's just growing pains you will get over it or everybody hurts now and then, or it is impossible for someone to hurt that much, no one understands the pain that we are really in.

Most people with Ehlers-Danlos syndrome go to many doctors and spend a large portion of their life never knowing what's wrong with them, I myself see over 19 doctors and that's because all the doctors specialize in just one thing, and I was not diagnosed until I was 44 years old. Once you receive the diagnosis of Ehlers-Danlos syndrome you have to have every body part checked, every organ checked, because our collagen is weak, it's possible to die from what would be a simple problem for most people if it's not taken care of. Once diagnosed you also find out if there are many other diseases that you have because of Ehlers-Danlos syndrome.

Most people with Ehlers-Danlos syndrome are very sick even though they look just fine, I myself am very sick and some days I cannot even take care of my basic needs although I look perfectly healthy. But if you really pay attention you can see the fatigue on my face, my red cheeks from poor blood circulation, or a fever, the straining, and caution with my movements.

Most people with Ehlers-Danlos syndrome have to go to the emergency room often, I myself sometimes have to go several times a month and then there are times when I might not go for a month or two. For us, it is very frustrating to go to the ER because many of the doctors that you see in the ER don't know what Ehlers-Danlos is and you are treated as if you are a freak or someone just looking for attention.

Most people with Ehlers-Danlos syndrome are often abandoned by their friends and forgotten about, I myself have some relationships that have suffered because very few of my friends have researched or ask me what Ehlers-Danlos is. Because I don't have a disease that people know about others are uncomfortable talking about it, they don't know what to expect from my disease or how to support me. I can think of many ways to help me.

Most people with Ehlers-Danlos syndrome are afraid of the future, I myself am afraid that I will be left alone since I have no husband or children. I myself am afraid of how I'm going to take care of myself, I'm afraid that I will lose the ability to walk as I have already lost the ability to cook and clean like I want to.

Most people with Ehlers-Danlos syndrome have anxiety and depression, I myself have lots of depression and I often feel suicidal because I am afraid of my future and my pain on most days is just too much to handle, and I have lots of anxiety about what's going to happen to me and also if what I'm doing is going to dislocated joints and cause more pain. Sometimes I have anxiety about going to the doctor's appointments alone and understanding everything they tell me if they're even going to know what's wrong with me in the first place.

Most people with Ehlers-Danlos syndrome have chronic fatigue, I myself have chronic fatigue, there are days when I cannot wake up no matter what, and then there are days that I'm so exhausted that I cannot go to sleep because my pain is too great to rest.

Most people with Ehlers-Danlos syndrome just need someone to understand, I myself need someone to understand that I cannot stop thinking about Ehlers-Danlos syndrome as it affects every single second of my life no matter what I'm doing I am in constant pain, there is never a break from pain, I need someone to understand that I need to sometimes talk about what is going on with me and my body, and that I need to talk about my fears and my concerns, and I need someone to understand that I'm not being negative when I'm depressed and I'm not being negative when I talk about my health issues. I need someone to understand that even though my voice sounds happy or my voice sounds like I feel good that I really don't feel good, but I can still feel happy and not feel good. I need someone to understand that I can't change my disease or how I'm feeling by suggestions that are made to better my health, I have tried lots and lots of things and believe me if those things helped I would be doing them. I need someone to understand that I don't need to be fixed but instead I need someone to say I'm sorry this is happening to you and I'll pray for you.


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