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Posted: 22 August 2013 08:18 PM   [ Ignore ]   [ # 16 ]  
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I am so sorry for your struggles! EDS is quite the evil mastermind controlling so many things from behind the scenes and causing so much havoc. It still amazes me how these conditions seem to just slip through the cracks and not receive the amount of attention they deserve. Not having a child or ever attempting to have one, I can’t imagine how difficult and painful infertility and miscarriages must be. My heart goes out to you and every single person who has ever suffered through something so difficult. *hug*

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Posted: 22 August 2013 10:18 PM   [ Ignore ]   [ # 17 ]  
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Thanks JenB.  This disease takes so much from us all, and leaves us with very little.  There are days I wish I would just die because the pain is so bad.

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Posted: 23 August 2013 06:02 PM   [ Ignore ]   [ # 18 ]  
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It seems a response I tried to post last night did not go through so I will try to do a brief recap. Lab-Scientist-Lady, while you and I have not had the exact same experiences, I shoulder that burden with you. I have been to the darkest places possible even before my body deteriorated. I know what it feels like to be so tired, so exhausted from simple survival. Moving from one moment to the next can feel like it is just too much to take. The mental, emotional, and physical toll can be overwhelming. My depression was that strong and my panic attacks were/are also that strong. For most people, panic attacks seem to not last very long whereas mine can remain at full intensity for several hours and then remain at a moderate level for days. There is no relief. There is physical pain, intense nausea and vomiting, my entire body clenches and shakes, my skin becomes overly sensitive to any stimuli resulting in more nausea and discomfort, and so much more. ‘Discomfort’ doesn’t even begin to describe it. Everything is so bad that speaking and thinking are not possible. And I remain in that place for several hours when even a few seconds of it is torture. I broke down in tears last year when I started having a string of attacks and even ended up going to the ER 3 separate times in a desperate search for help. The emotional pain was worse than what my body was going through. I was just so desperate and tired of feeling that way. The depression and the anxiety are just so hard to go through and it drains everything you have. I was so tired. So exhausted. So fed up with feeling such an intense level of suffering. It can be soul-crushing. It can take so much just to survive from one moment to the next. You just want it to end. You just want to not have to feel it anymore. The idea of going through even one more moment of it can be overwhelmingly painful. I might not be able to make it better for you but, for any moments when it might actually count for something, I understand. I truly, truly understand. *hugs*

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Posted: 23 August 2013 08:10 PM   [ Ignore ]   [ # 19 ]  
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JenB - 23 August 2013 06:02 PM

It seems a response I tried to post last night did not go through so I will try to do a brief recap. Lab-Scientist-Lady, while you and I have not had the exact same experiences, I shoulder that burden with you. I have been to the darkest places possible even before my body deteriorated. I know what it feels like to be so tired, so exhausted from simple survival. Moving from one moment to the next can feel like it is just too much to take. The mental, emotional, and physical toll can be overwhelming. My depression was that strong and my panic attacks were/are also that strong. For most people, panic attacks seem to not last very long whereas mine can remain at full intensity for several hours and then remain at a moderate level for days. There is no relief. There is physical pain, intense nausea and vomiting, my entire body clenches and shakes, my skin becomes overly sensitive to any stimuli resulting in more nausea and discomfort, and so much more. ‘Discomfort’ doesn’t even begin to describe it. Everything is so bad that speaking and thinking are not possible. And I remain in that place for several hours when even a few seconds of it is torture. I broke down in tears last year when I started having a string of attacks and even ended up going to the ER 3 separate times in a desperate search for help. The emotional pain was worse than what my body was going through. I was just so desperate and tired of feeling that way. The depression and the anxiety are just so hard to go through and it drains everything you have. I was so tired. So exhausted. So fed up with feeling such an intense level of suffering. It can be soul-crushing. It can take so much just to survive from one moment to the next. You just want it to end. You just want to not have to feel it anymore. The idea of going through even one more moment of it can be overwhelmingly painful. I might not be able to make it better for you but, for any moments when it might actually count for something, I understand. I truly, truly understand. *hugs*


The sad thing is we all can relate to each other.  On some level this disease slowly takes away every thing that makes us who we once were.  I guess the key is to make some thing out of the person we now are.  Easier said than done.  Pain is a powerful thing.  It changes your mood and how you respond to every situation.  Being unable to walk well and do physical activities make one feel like less of a person.  Then there is all the dysautonomia problems that make you so sick.There are so many things that have to managed with EDS that it is overwhelming.  EDS has taken away my ability to work, drive, care for my self, and be the mother I want to be.  It has even changed my body and how I look.  It is overwhelming how EDS changes every little thing about you and your life. 

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Posted: 23 August 2013 08:44 PM   [ Ignore ]   [ # 20 ]  
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I’m right there with you. My anxiety had gotten in the way of working in the past but now my body couldn’t handle it either. I have trouble walking to the point that sometimes I just can’t do it at all. I can’t carry or lift things the way I used to. I can’t wash dishes anymore. I even need help taking showers. I can’t even put my own shoes on anymore. Every day seems to add new things to the list of things I cannot do. My problematic past taught me to embrace every little thing I possibly can because sometimes the little things are all you have. We have no control over what happens to us but we can control how we respond to it. I haven’t had many of the things that so many people take for granted and I know there is plenty that I will never have and so I take a “screw it” response. I’ll take what I can get, surround myself with stuff that makes me laugh or smile, try to live as healthy a life as I can muster to preserve what I have, and be there for others in their times of need. I might not be able to do much but I want to be awesome at what I’ve got. Maybe my future holds an endless line of struggles and/or losses but, screw it, I’ll just keep adapting.

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Posted: 23 August 2013 09:46 PM   [ Ignore ]   [ # 21 ]  
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That is the right attitude to have, and it is something I need to work on.  I had a lot of struggles for a long time, and I thought I would be able to make up for all that I missed out on in my younger years later in life.  Unfortunately, my better days are behind me.  I think that is the hardest thing.  All the could haves and should haves.  I think that adds to the depression.  I too have anxiety, but only recently realized what it was.  I started having problems at work with it, and thought I was just struggling with having to change jobs.  Looking back I see so many signs and symptoms that I was just dismissing.  I was only able to handle just so much.  It seemed easier to ignore most things and focus on the most problematic symptom at the time.  Today I got to eat out and I was able to tolerate sitting for the most part.  That is a rare thing both money and ability wise.  It was nice to get out, even though it was because I had a MRI appointment.  Which was a struggle to get through.  They had to break up my appointment into two parts because of my insurance, but i am glad now because I could have not made it any longer today.  Where do you live JenB? I am in Texas although I have moved a lot in the past. 
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Posted: 24 August 2013 12:13 AM   [ Ignore ]   [ # 22 ]  
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I’m glad you were able to eat out and sit for a little bit. Yay! I’m sorry the appointment was difficult. :( I’m glad that you could get a break from it instead of suffering through a longer one though. I too have lived in a number of places. I grew up on military bases so we bounced around a bit. Hawaii, Virginia, California, Maryland, and now I live with my husband and 3 adorable cats in Missouri. My little brother recently moved to Texas. Just outside of Austin, I believe. He loves it there and says everyone is so nice. smile

Oh my word, I completely understand the ‘Well, all that living I was hoping to do as I got older isn’t going to work out as well as I hoped’ feeling. That one can sting a little bit more than others. There can already be a sense of loss for the past and hope for the future can be so important to our ability to move forward. When that hope gets the rug pulled out from under it….well.. .suffice it to say that it can really suck. It can feel like a door is slammed in your face or that things that you didn’t even have are being taken away from you. It can be very daunting and hopefully it can progress to the point where you just change what you were hoping for in the first place. What I hoped for isn’t really an option so now I look for what can be done. There can still be moments of mourning for the ‘things that might have been’ but getting stuck there is a very dangerous thing. I have had to process the loss of so many things that it is pretty much a part of my day-to-day life. Another bad thing happens and I go “Well, that sucks. Guess I’ll fold it into the mix and on I go.” I may get beaten down sometimes but I won’t stop. And you are here. That makes you a survivor. A true fighter and warrior. You can be scared, broken, and drained but you have nothing but a long list of victories behind you (even if they don’t feel like it). There are things you can’t have or may not have but your experiences are all victories in their own way because you are still here. They didn’t break you. You survived to live another day and have given yourself the chance to find joy in new things. Even in the darkest of days, that can never be taken from you.

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Posted: 24 August 2013 12:04 PM   [ Ignore ]   [ # 23 ]  
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Hi JenB,
    Amen!  I can believe how much other zebras understand each other.  I have already lost friends because they don’t understand why I can go do things.  You definitely have EDS.  I think I would even tell the gastro doctor that on Monday.  Say you are waiting on seeing the Geneticist to learn your type.  That way they don’t dismiss you.  Say you have been clinically diagnosed.  I did that so I could see cardiologist and have him order the correct test to check my aortic root.  BTW you need to see a cardiologist too.  Do you know which of your parents have EDS?  Do your brothers have signs of it too?  For me it is my mom and her parents.  I actually think both her mom and dad had EDS.  All her brothers and her sister have it.  I am trying to convince everyone in the family to go get checked out.  My grandpa had a AAA, and his mother, and several siblings died suddenly.  Grandmother also had severely sibling die suddenly and others lived forever.  I really think if one person has EDS then every one has it.  All it takes is one copy of the gene.  The severity ranges from one person to the next, and it appears that men are less bother by it than women.  I wonder if it is because their muscles are stronger and that helps keep their joints more stable.  I have the Classical form of EDS.  I currently score a 7 out of 9 on the Beighton scale.  I may have been a nine at one time, but I have arthritis bad in all my joints.  My kids all show signs and I am going to get them in next for testing.  I am waiting on my test for the vascular form to come back.  My mom has made her appointment with a cardiologist.  I don’t have any siblings. 
    I live in the Dallas Forth Worth Area.  Growing up I lived in Colorado, Wyoming, Oklahoma twice, Louisiana, Michigan, and Texas twice.  My Dad worked for a company that was always moving people around.  Do your cats bother you?  I know you said if your cats scratch you you break out.  I have one and I have had life long allergy problems and all the dysautonomia problems.  I had her completely declawed so she could not inculcate me.  It helps as long as I don’t scratch myself or have any breaks in my skin.  She has even started sleeping in our bed, which until recently was off limits.  She just knows not to get up in to my face.  She is a great comfort to me.  I’ve had three surgeries this year and she has watched over me.  She would lay next to me and follow me every where to make sure I was fine.  We also have a dog, a yorkie poo, 2 guinea pigs, and fish.  I have problems with all the animals, but I thought having them would help be react less and I hope will do the same for our kids.  Growing up I always had a lot of pets and as time went on I started reacting to them.  I have learned that females are less allergic than males, even though the dog is male, and they all get regular baths. 
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Posted: 24 August 2013 05:37 PM   [ Ignore ]   [ # 24 ]  
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Hello Lab-Scientist-Lady!

I suspect that my mom has EDS. She has really soft skin, wide paper scarring, was ‘clumsy’ a lot (was the ‘clumsy’ one among her siblings), & a lot gastrointestinal issues & what I suspect are autonomic issues. I think I remember a picture of her when she was younger & her knees looked like they were hyperextending even though she was simply standing. She also has some resistance to pain meds like I do. I mainly have to go on my own observations & memories because trying to get a straight answer out of her is almost impossible & she doesn’t talk to her family much. She has 6 brothers & sisters & I have no idea if any of them could have symptoms or not. I’ve told my mom about all of this and she blows it off. Her parents died when I was young and I don’t remember meeting them. All I know about them is that my grandmother had uterine cancer that had metastasized everywhere and my grandfather had more than one heart attack in his life. A heart attack is ultimately what took him just a few months after my grandmother passed. They were both 67 I believe.

I got a hand tremor from my dad and he has Terry’s nails like I do. He also has worsening anxiety to the point of beginning to have attacks starting in his 50s. I know his feet have felt numb for a few years. He’s never asked a doctor about it so no helpful info there. He also had a tendon rupture or whatever it is when the bicep becomes separated from the arm at the elbow. He has had a couple surgeries on it and still has a lot of pain. He injured his knee when he was in his teens and eventually had surgery because there was no cartilage left. Like my mom, he also does not have much contact with family so I have no idea what other symptoms might be floating around there. I believe both of my parents suffer from Depression and I think my mom may have some other mental issue going on but I don’t know what it is. I only met my dad’s dad once when he was on his deathbed and I only saw his mom a few times. I’m not sure what ages they were when they passed away almost 20 years ago. I know my grandfather died from complications from AIDS I believe and I think my grandmother had all kinds of stuff going on. I think there was emphysema and some other lung thing and I want to say another condition or two but I have no idea.

My family and I don’t talk much. I have texted here and there with my mom but I haven’t seen my parents in almost 3 years. And that was only because my husband’s grandfather died and we were attending his funeral. Since our families are from roughly the same area, I have to also do a courtesy visit with my parents to avoid any issues from not seeing them. So getting any info let alone a detailed history is probably not in the cards for me. Oh well.

I have an older brother and a younger brother who both have some health stuff going on. My older brother was born with a Ventricular Septal Defect so he has a hole in between the ventricles in his heart. If you listen to his heart, you don’t hear a “thump thump” and instead hear the sound of a half-empty water bottle, held sideways, sloshing back and forth. He also has pretty strong asthma and is allergic to soooo many things. He has issues with temperature change, his hands can become extremely swollen in the cold, and he wants to be in the cold all the time. Everything feels too hot to him. He had horrific “growing pain” in his legs that would cause him to scream and cry at night. He has stretch marks from growing like I do and I believe he also has some sort of gastrointestinal issues. He mainly seems to deal with flatulence that is like something died in him. He had a nasty case of Bursitis. The lump on his elbow was huge and the bruise covered the entire inner upper arm. I’m not sure if he has any hypermobility. Like my parents, he doesn’t really give straight answers so I can’t pinpoint exactly what is going on and can only rely on what I have observed.

My little brother seems to be the most like me. He has terrible joint pain and very obvious gastrointestinal issues. To the point where even one bite of ham or bacon will put him in the fetal position on the floor. He has a curve in his spine that is supposedly just millimeters shy of being official scoliosis so I just say he has scoliosis. He has terrible lower back pain like I do. He and I both get these odd little patches on our skin where everything looks normal but it becomes extremely over-sensitive and painful to the touch. It eventually just fades away on its own. He apparently asked a bunch of his friends and they had no idea what he was talking about. He asked me and even said “Oh dear god, please tell me you know what I’m talking about.” I’m one of the few people who has ever understood much of what he deals with. I’m not sure if he is hypermobile. He has ADD-like symptoms and I found Dr. Driscoll’s video about mental issues very interesting because she mentioned Bipolar presentation. I have been worried about my brother for several years because he has shown self-destructive behavior, has attempted suicide more than once, seems to have mania stages where “everything is wonderful and he wants to do this thing and that thing and it will all be great” and then he will have depressive stages where everything is awful, life isn’t worth living, etc. He took a bunch of pills last year and was brought to the hospital. The docs gave him charcoal stuff to absorb it, talked to him for no more than an hour and sent him on his way. He had seizures while on the bed and acted like nothing had happened at all when he woke up. Just popped up and was ready to go back home and didn’t understand why anyone would be upset. He has had terrible dehydration that caused his body to lock up & his hands looked like claws. Earlier this year where he was blacking out & falling in public. He was supposed to have a TTT but just ignored it. He said the saline IV he was on in the hospital was the best he has ever felt.

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Posted: 24 August 2013 05:38 PM   [ Ignore ]   [ # 25 ]  
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As for my own allergies, I think I am allergic to all kinds of things including cats but cats don’t seem to be a severe one. If they have recently been licking themselves and I pet them or hold them near my face, my eyes can start to burn and water and my skin can feel a little irritated. It’s nothing compared to my outdoor allergies or when compared to my older brother’s reaction to cats. Some cats seem worse for him than others but it sets off his asthma in a really bad way. He had those shots in his arm to test allergic reaction and his skin looked like mine where it gets all red and gets huge welts. My brother lives with his girlfriend who has a cat and two rabbits. He seems to do a little better with the rabbits but the cat does a number on him. Before my little brother moved to Texas, he was still living with my parents and had gotten two cats. He left them there when he moved and whenever my older brother has gone to my parents house he gets terrible allergies. He has a horrible time breathing and even ended up sitting outside of the house sometimes as well as wearing a breathing mask indoors to see if that would help. My parents kept trying to get him to hold one of the cats even though his reaction is obvious. They. . . are not helpful. We had dogs growing up and he never seemed to have an obvious issue them.

I LOVE animals so I my heart needs to have pets. They have been the only consistently pleasant thing I have. My husband and I used to have fish but we had to move enough times that it was just too heartbreaking to lose the fish each time and my body couldn’t keep up with taking care of the tanks. I injured my wrist from lifting and turning a bucket of water and the pain was excruciating. For a few weeks after, the pain was intense and I couldn’t use my arm for anything. It hurt no matter what position I put it in and I was wearing a brace to stabilize it. Even now, a handful of years later, I get pain in that wrist. I can’t turn my hands palm up without it feeling like that wrist strains and pulls. There is something in the wrist that also pops and moves, I think. Oddly enough, that wrist is acting up right now. Ouch. I recently saw a video of a wrist subluxation and that is something my wrist has done a handful of times. I have also had what I now believe are subluxations in both sides of my hip but mainly the right side, my wrists, ankles, a clavicle, my sternum, and maybe my knees and a shoulder. Oh and one time it felt like it in my neck. That was scary. I don’t know if any of my family members have had that at all.

I definitely want to see a cardiologist. I tried seeing a rheumatologist recently but was told not to bother since that doctor was leaving that month and I should wait for the new one. That new doctor should be there now but I haven’t tried setting up an appointment yet. I feel a little more able to handle appointments now after taking Dr. Driscoll’s recommended Zantac/Zyrtec combo. I was feeling out of my mind delusional for a bit. It didn’t feel like brain fog. It felt like dementia. It was terrible. But a few weeks of the meds seems to have brought some clarity back. Yay! I hope to get official answers soon. I am so tired of not knowing. Oh! And my husband and I just completed our 23andMe kits so fingers crossed I will get something useful out of that in the coming months.

I actually suspect my husband may have EDS as well. His knees seem to hyperextend just a teensy bit, his skin is hyperflexible and stretchy, he has some paper scarring, and a mild case of scoliosis. He pops his sternum all the time and has a pretty bad issue with the IT band of his left leg. His hip sits pointing outward and his feet point outward so his IT band is irritated and is as hard as a rock. When he was still in the military (he got out last fall), he had no choice but to see a doctor about it. He was basically crippled. He had so much pain and couldn’t tolerate walking or even standing for long. He saw a physical therapist once and got a steroid shot which helped him a lot. He still has issues with it and I am trying to teach him how to be mindful of where his joints are. He also has a nasty case of sleep apnea which is not weight-related. I suspect that joint laxity may have something to do with it because his head just collapses in on his neck and his ribs seem to collapse a bit when he lays on his side. If I hold his jaw to open his neck or if I lift his shoulder to open up his ribs, he immediately breathes better. He had a cancer scare earlier this year (well two separate ones actually) and the areas where his skin biopsies were taken seemed to not heal well. The scars seemed to open a bit and remained very dark and purple. His father has sleep apnea and one of his uncles’ from his father’s side has knees that definitely bend too far back.

I want answers! *shakes fist at nothing in particular* A weird thing is that as a kid, besides always knowing something was wrong, I had this feeling that I wasn’t going to make it past 30 or at the very least there would be some big medical thing going on then. Well, I turned 30 and all hell broke loose and I have an uncertain future. I joke around and say “Ha! I knew it! You all said I was crazy but I was right! Bwahahaha!”

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Posted: 25 August 2013 12:12 AM   [ Ignore ]   [ # 26 ]  
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Wow Jen it sound like all you have the classic form of EDS, because all of you have skin involvement.  Sounds like you husband does too.  I will have to write more tomorrow.  I got to get to bed for early church. 
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Posted: 25 August 2013 06:13 PM   [ Ignore ]   [ # 27 ]  
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Hi Jen,
I can totally understand the need for answers.  For me I was so busy trying to get a doctor to help me with my knees, that I did not want to bring up all the thousand other problems I had for fear they would call me a hypochondriac.  So I focused on the top few problems and what hurt the worst.  This year when was bed bound after surgery and with a gift of a tablet I started Researching online.  My son and I spent a lot of time watching TV and while watching The Little Couple on TLC, he asked me about achondroplasia.  The scientist in me told him what I knew, then I dove into reading more.  The more I read the more it lead to something else to read about and on and on.  Then I came across EDS, and when I started reading about it I could not believe how much it fit me. So then I got on U tube and found Dr. D.  I could not believe how I was able to miss it all these years.  When I finally met with a Geneticist she said she had never met a person that fit description of Ehlers-Danlos better than me.  She was amazed that no other doctor had picked up on it.  I had only two doctors out of a hundred that mentioned that I must have something vascular and connective tissue wise going on.  Of course that was a far as they went.  I’ve even had doctors tell me they can’t help me don’t bother coming back.  The worst doctor I saw told me I was in such bad shape for someone so young that there was nothing he could do to help me, and not bother trying to find someone else because no one to take me on as a patient because I was a too great of a risk.  Nice!  And this was a doctor highly rated and ” top in his field”.
  Sorry about all the family problems.  Life is hard enough without adding more problems.  My Mom’s side is great, but the communication is lacking.  I really only have my Mom and Aunt.  I have no siblings and my dad’s family is dysfunctional.  My husband family is dysfunctional as well.  I have tried so hard to fit in and that will never happen.  I have already wasted to much effort.  You also, find out what kinds of friends you have when not a one visits you in the hospital or asks how you are doing.  So now I am friendless.  I went up to work today.  It was the only day I could get for my mom to watch the kids so my husband could help me clean out my locker and get my things.  I turned in my badge and walked out in tears.  Over the last eight years I was slowly having to modify my life, house, car, and work to fit around all my mobility problems, but some how I did not see this coming.  I still can believe that my career is over.  I am too young to be this broken, but I am.  It is funny, and not in a ha, way, how something’s you don’t see coming.  Or may be you don’t want to because it to painful to think about.  I think that is why I get anxious.  I’m only going to deteriorate and how will I get by as I keep getting worse?  I can’t work, I can’t really drive well,  get around , or even shower.  I rely on my husband to do everything.  I am supposed be taking care of three kids, but without his help I would not be able too.  That what scares me.  I am in a situation that usually someone much older finds themselves in.  I rarely leave the house, and that is the life of others like me.  Life goes on for everyone else while those with health and mobility problems are forgotten.  They are home bound, bed bound, etc..unable to work for income.  It is a viscous cycle, and one that only people that have the same problems understand.  For everyone else we are a drag. 
I really hope your husband doesn’t have EDS too,  but it sounds like it.  It sounds like you, your brothers, and mom have the classical form, because y’all have the skin involvements. I have all the same scars and I had two surgical incisions open up.  All your symptoms are almost identical to my problems.  Dr. Diana has a symptom check list.  You should fill it out.  It is very helpful. This forum has been a big help.  I have also found a few Facebook EDS groups.  It helps to exchange ideas, because the doctors are clueless. 
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Posted: 25 August 2013 07:17 PM   [ Ignore ]   [ # 28 ]  
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Jen,
About you little brother.  He sounds a lot like me.  Pain is a hard thing to live with, and I think a lot of people with EDS think about suicide or carry through with it.  I wonder how many cases are persons with EDS that never knew they had it?  When I went back through my family history I found two persons that were thought to have killed themselves.  Alcoholism was prevalent too.  Looking at their pictures they had the EDS look.  I hope your brother will get help.  Maybe he should move closer to you?  Y’all could be your own support system.

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Posted: 27 August 2013 06:48 PM   [ Ignore ]   [ # 29 ]  
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I am so sorry for all of the pain and fear that comes with these health problems. I completely understand having one thing after another slip away and yet, at the same time, it feels so sudden. I want to smack those terrible doctors of yours. Ugh!!

I saw my gastroenterologist for the first time yesterday and it went well though didn’t cover much. I am to have an endoscopy done to check what condition my esophagus is in after all of these years of acid problems. I said that I have Ehlers-Danlos, Dysautonomia, and still have to rule out Multiple Sclerosis and Mitochondrial Myopathy. He said Ehlers-Danlos sounded familiar and he asked what it was exactly. He actually wanted to know! I think it helped that I can bend my pinky finger so far back so it’s obvious that something is not right and I was also in extreme pain yesterday in a number of joints. My lower back and the base of my skull have been giving me a lot of problems lately to the point that, for the first time ever, I considered sitting in a wheelchair when my husband and I stopped at some stores after the appointment. During the appointment, I was in so much pain. My head/neck was killing me and my lower back made moving difficult. My doctor. Dr. Ansari of Fenton, MO for anyone who may read this who is near there, was incredibly nice. He saw the pain I was in and how weak and shaky I was and seemed very concerned and considerate as I slowly climbed on to the medical table. I was shaking as I was getting off the table and he even helped support me as I got down. Maybe other doctors or people are like that but little things like that are so alien to me. It completely blows my mind when someone is actually decent. I don’t know if we were short on time (I did arrive late despite all efforts to get there on time) or if my doctor is waiting until after the endoscopy to address other issues but all of the other stuff wasn’t really addressed in this appointment. He seemed satisfied that Zantac was helpful so far and did say he wants to keep an eye on how it goes because I may need to try out another PPI. He was reluctant to have me travel 3 hours just for him to do an endoscopy but I’m seriously tempted to have him do it instead of someone closer. It is hard to find people to trust and I would rather keep things as limited as possible to avoid a “too many cooks in the kitchen” kind of thing. I would hate it if I have an endoscopy done by someone else and then Dr. Ansari says it didn’t quite check everything that he wanted to see. His office (with a receptionist who was absolutely atrocious and disrespectful) had trouble with my insurance so now I have to work that out on my own before I can schedule the endoscopy. At least my husband can be a huge help with that. Ever since I was little, I absolutely hate phone calls with a fiery passion. And if things get messy, I really hate having to work with a bunch of different people to try to get things straightened out. My husband has always been helpful in that regard with handling phone calls for me and, as he gets more and more protective as my suffering increases, he will “strap on his Staff Sergeant boots” and is willing to fight hard to make sure I get the care I need. I don’t know what I would be able to do if he didn’t help me with so much. He is not in the military anymore but his past deployments really drive home the “I can’t take care of myself!” feeling. Being alone for one week or even a weekend can be scary to me because I have no one else. He also had two separate cancer scares this year alone so the idea that illness or random accidents could affect his life or ability to get around . . . is not fun. The intimidation of an uncertain future is so thoroughly life-changing.

I too stumbled across EDS by accident. I was doing an image search for finger splints because I was so desperate to find some way to support my fingers and stop the pain. In the results was a picture of the Beighton scale. I thought ‘Hey, wait a minute, I do that!” Digging into that I immediately see the name Ehlers-Danlos Syndrome and things start making sense. I then find Dr. Diana and I rapidly fall into a whole new world where everything makes so much sense and all of these random things fit together. Symptoms that I had no idea happened for anyone else. Things that actually have official names. It’s insane. Checking Dr. Diana’s symptom list, my goodness I have a lot of that. Over 100 of them I think. I have to check again and count it out but I definitely have so many of them.

Hopefully I can get the endoscopy thing straightened out soon and I have a neurologist appointment in a couple weeks. At the rate that my joint pain is going, I may have to squeeze a rheumatologist in there so I can find out exactly what condition my joints are in.

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Posted: 27 August 2013 11:18 PM   [ Ignore ]   [ # 30 ]  
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Joined  2013-05-17

Glad the gastro appt went well.  So you drove three hours?  I would not be able to sit up for that long.  What we have to go through for help.  It might be worth it though to go back for the endoscopy.  That way he is doing it his way, and especially since you like him.  It is highly unusual for a doctor to help a patient off the table.  They are usually out the room so fast.  I have the same shakes and it drives me crazy.  It was one of the first thing the geneticist noticed, was my tremor.  Yesterday I went for an MRI of my neck, during it you can’t move or swallow.  The poor lady scanning me had to repeat several films.  I tried so hard, but the jerks are involuntary.  My mom got in today to her cardiologist, and seemed to like him.  He is quite worried about her heart murmurs.  She has an echo in a couple of weeks. 
    I am glad you found out sooner that you have EDS.  Maybe you will be able to slow your symptoms down and help your brothers.  Did you every buy the hand splints?  I am thinking about getting some . My thumbs keep popping out with random movements, and it really hurts.  My PT even saw it happen while I was doing a wall exercise.
Shonda

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