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Life of Agony…

by 17 Comments
May
10
2011
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How ironic is it that one of my favorite bands is Life of Agony? Never in a million years would I think I would end up living a life of agony. I am not just speaking of the physical pain, but of the emotional pain that goes along with suffering from a chronic illness. My days are so unpredictable it’s frustrating. One day I am fine, the next four days I can barely move. I have to decide if today is really a day worth taking a shower for because the pain of the water hitting my hypersensitive skin makes it an unbearable task that I now avoid. I have bouts of guilt for being in pain and barely able to walk one day and then walking fine the next day. People think because I am young I am faking it. I wrestle with my mind because my mind tells me I should be hunched over, limping, using my cane, walker or wheelchair all the time. That I should not take advantage of my good days. Why? Because I crave consistency! For ONCE it would be nice to know what I will consistently be facing. I … [Read more...]

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INSPIRATION…

by 5 Comments
Mar
21
2011
Inspiration

It has been a while but I am back. I apologize for the lack of posts but the truth is I was in a yucky place and just could not dig deep enough to find the inspiration to show up and post. I apologize for that because this blog is my responsibility and I do take it seriously. When a lot of things happen at once you really need to fine tune your coping skills. It’s an actual job, something you must be diligent with. I failed in that task and my depression and pity party got the best of me. I hate being a Betty Buzzkill, its not who I am. Its part of who I am but only a small part and one I struggle to keep in check. When I get that way I find it a lot harder to make myself reach out to others, I don’t like to spread negativity. So in my feeble attempt at protecting all of you by way of isolation, I had let the blog take a back seat and for that I am truly sorry and will make sure it won’t happen again! That being said, I decided to make this blog topic about INSPIRATION! I am … [Read more...]

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All I want for Christmas is…a new body!

by 11 Comments
Dec
17
2010
1275664_dreaded_gingerbread_woman

So the holidays are here again! Everyone is excited, running around decorating, shopping for gifts and planning their holiday menus. Most importantly they are making their holiday wish lists. All I want for Christmas is a new body! I honestly DREAD the holidays! Don’t get me wrong! I LOVE shopping, I love giving gifts and well, lets face it…I LOVE GETTING GIFTS! But truth be told, the holidays for someone battling an illness is STRESSFUL! Most people worry about the credit card bill they have to pay at the end of the month but for people like us, who are physically ill, we have to worry about the bill that comes in for over extending ourselves. There will always be a price to pay! I sat in line, on my scooter, for 7.5 hours on black Friday to get my Mom the laptop she wanted. During that time I dislocated a hip, my knee and my wrist. I got home and the next 48 hours were excruciating for me. Swollen feet, blazing back pain that takes your breath away, skin so hypersensitive … [Read more...]

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Ignorance and Insensitivity where do you draw the line?

by 15 Comments
Oct
25
2010
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(This blog entry is a fan picked topic…thank you Nicole Bergreen!) Nicole, had shared with me that during her most recent hospitalization, (#7 within 8 months) she had a CNA at the hospital tell her that if she believed in God and prayed hard enough her POTS and EDS would go away. SERIOUSLY? I understand that most people cannot grasp the gravity of such a devastating illness if they have never had to experience the symptoms. I also understand people want to lend comfort, and some people find comfort in religion or other ways. But the fact of the matter is that the CNA was completely out of line. For numerous reasons! The most obvious being, how does she know Nicole’s beliefs? Secondly, and most importantly, in her comment of “pray hard enough and it will go away” she is essentially saying that Nicole’s illnesses are not serious, and pretty much all in her head! I believe the line of ignorance was overstepped and this CNA landed squarely into the land of … [Read more...]

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Don’t Judge a Book By Its Cover….

by 17 Comments
Sep
23
2010
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Can you tell someone is a serial killer just by looking at them? Can you pick a millionaire out of a group of people all wearing the same exact thing? The answer to both these questions is a resounding NO! So why is it that people think that to be sick you must look a certain way?  I am so sick and tired of being judged because I don’t fit peoples description of what someone who is as sick as I am should look like. I have a few illnesses, RSD (Reflex Sympathetic Dystrophy), EDS (Ehlers-Danlos Syndrome), and CAV (Coronary Artery Vasculitis). The EDS is both Vascular and Hypermobility types. The RSD is full body.  There are days when I am just fine, days I walk with a cane, a walker or days I am bedridden. I can start out fine and suddenly lose my ability to walk. Such is the case last Friday when I was having a rather good day health wise. I went to fill a prescription and while walking through the store my ankle suddenly dislocated and I couldn’t walk so my husband had to … [Read more...]

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Your Spouse, Your Illness and You…

by 20 Comments
Sep
05
2010
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For so many of us, getting out of bed is a struggle. Fighting thru pain, physical complications and emotional stress round the clock takes its toll on us for sure but what about the toll it takes on our spouses? One of the biggest lessons I have learned in recent years, thru near death complications from vascular EDS, is that whatever is happening, is not just happening to me. It is happening to US. We are so quick to shut down and turn inward with our “what if” thoughts and thinking no one has any idea what we are going through but this is the farthest thing from the truth! When I was obsessing over the potential “what if” outcomes of my brain surgery I had thought I was alone, but one night my husband told me that he had a knot in his stomach and was playing the same “what if” game in his head. He admitted that he even “lost it” on a job site once! (My husband is a 100% Italian construction worker guys guy, he NEVER sheds a tear!) He didn’t try to fill my … [Read more...]

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Your Body Knows Best!!

by 10 Comments
Aug
27
2010
EKGBody

Greetings and Salutations to all my FLAGC members!! I hope you are all feeling well. I have been a bit under the weather (yes I know you are stunned by this shocking revelation! LOL!). Last week I decided to go to a cardiologist because my blood pressure was a bit high, for me anyway…I gauge it by my monthly visits to my pain management doctor and noticed that my systolic is always between 106 and 117 and then it suddenly jumped to 143 two months ago and 187 this month! I was a bit wigged and even though the pain management nurse and PA told me it was nothing to worry about I just felt my body saying “Something’s not right…AGAIN!” My body and I have lots of conversations and I trust my body more then I trust people with fancy degrees! If there is one thing I have learned since I’ve been sick, it is that YOU MUST BE YOUR OWN ADVOCATE FOR YOUR HEALTH! Well sure enough, my body was right! As the Doctor looked at the results of my EKG he suddenly turned and said “You … [Read more...]

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EDS (Ehlers-Danlos Syndrome) – My Story

by 26 Comments
Jul
29
2010
EDS - My Story

Greetings fellow FLAGC Members! My name is Dani and I am honored to be the official writer for all things EDS. In case you’re wondering what EDS stands for…it is Ehlers-Danlos Syndrome. EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results. Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is merely supportive at best, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Corrective surgery may help with some of the problems that may develop in certain types of EDS, although the … [Read more...]

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