New Diognosis: EDS/Hypermobility

At the beginning of last week I was diagnosed with Hypermobile Ehlers-Danlos (HEDS). I had already been told I didn’t have it by two other doctors, plus the doctor I was seeing at the time was supposed to be helping me with my fibro, so I was really surprised when I received the diagnosis. I had spent several months thinking I had hypermobility (even after the two doctors told me I didn’t), so I wasn’t shocked. It’s nice when a doctor confirms what you know in your heart. This doctor was phenomenal! He and his staff made me feel like a VIP by treating me in such a way that I knew they were there to help me. All doctors should be there to help their patients, but I have rarely felt like more than just another appointment to hurry through. Anyway. The doctor gave me the HEDS diagnosis (he told me I was “stretchy person”), made it my primary issue (instead of fibromyalgia), and filled my schedule with new tests and appointments. I had blood work done, started physical therapy, am scheduled for an echo-cardiogram (to make sure my heart valves aren’t stretching), and am waiting to get custom orthotic insoles made. Eesh! 

So, what does this new diagnosis mean?  I have a more solid diagnosis than fibromyalgia and will possibly be taken more seriously from now on – yay! I now understand all the weird issues I’ve had since I was a child and have a better understanding of why I feel like I do these days. I have a better idea of what to expect in the future and have a solid plan for improving my quality of life. It also means that I now know that every child I give birth to will have a 50-70% chance of having HEDS as well. 😦 The doctor gave me a referral to genetic counseling; it took me awhile to understand the full gravity of what that meant. The thought of passing on pain and problems to my children is very troubling and it had me in tears for awhile after the appointment was over. But then I realized that, despite all the pain and confusion in my own life, I am very happy to be alive and have no regrets. It’s true! At least one mother with HEDS I’ve spoken with feels very strongly about NOT passing it on to more children (she already has one, a daughter who did get the HEDS) and is getting her tubes tied. But 90% of the other mothers with HEDS I’ve spoken to have no regrets, even though the way was fraught with pain, loss, and the discoveries that their children will have this disease as well.

HEDS is painful and weird, but it’s not life-threatening. The vascular form of EDS is very scary and very dangerous, but I do not have that form. I will only be able to pass on the form that I currently have according to this: “It is worthwhile to emphasize to affected individuals and family members that EDS, hypermobility type does not evolve into any of the other types, either in the affected individual or in their offspring, and that the hypermobility type does not confer increased risk for early mortality.” I sincerely believe that I will be doing the right thing by having children. I am very at peace with this decision and so is Honey. In regards to how the news of the HEDS will impact my body’s ability to carry a baby… I already knew any pregnancies would be very hard and painful, now I have a better idea of what to expect. Again, I’m completely at peace with the thought of bringing a baby into the world, although at the moment I’m a bit concerned about picking the right timing. I’m gonna need a lot of help during the pregnancy and then even more once a baby is born, so Honey and I need to be in a place (financially and literally) where we can make that happen. But… I had a beautiful spiritual experience the other evening (before I received the new diagnosis) while taking a much-needed soak in the tub. I felt loved, comforted, and blessed for wanting to conceive. So… who knows? Maybe there will be little people in the near future, and I’ll be their stretchy Momma. 🙂

The doctor did express concern about a potential heart problem associated with HEDS and had me get an ultrasound of my heart (echo-cardiogram). I had that done on Monday and am nervously awaiting the results. A heart issue could potentially impact my ability to carry a child (more than the rest of my condition)… so that has me worried. Will let you know when I have an update.

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Update on Pain & Medication

I just realized that I never wrote a follow-up post to my last post about how I’m managing my pain. Oops! The arnica has been wonderful! I use it anytime the pain starts to be unbearable, and within a few minutes the pain eases off and I feel much better. Between the arnica and my diet, I’ve seen a big improvement in my fibromyalgia. This does not mean I function normally or even well most of the time, it just means I’m not miserable ALL the time. And that is a big improvement and I’m incredibly thankful for it! Hopefully once we start GAPS I’ll have even more improvements to report.

I Want to Save the World… But How?

There are a lot of things in this world that are really, really wrong. People who are killed, families torn apart, children who are starving. So many of us seem set on promoting violence and war instead of peace. How many millions have died because we couldn’t get along and show love to our neighbors?

Then there are all of the problems that have come with industrialization and modern things. The great power of science is being used for profit instead of the good of the people and the very future of humanity could be at stake (antibiotic resistant illnesses, GMO’s, global warming caused by plastics and so many other things, polluted air and water, chemicals in our food and everything around us).

It’s a lot to take in, and once you have taken it all in, you’re left wondering, “Well… what now? What can I do?” More

Music: My Means of Survival

Surviving Music has seen me through some really tough times in life. Many phases of my life are associated with specific artists, styles of music, and songs. I imagine that is normal. The past three years have been particularly hard for me, so I have a lot of memories associated with music that might be considered dark. When you are in a dark place, the last thing you want to hear is something fluffy and light (am I right?).

Here are my musical memories:
These songs helped me survive the hell that was my last semester at college: Nightwish’s album “Dark Passion Play” (instrumental version mostly) and songs “Cadence of Her Last Breath,” “Meadows of Heaven,” “End of All Hope,” and “Nemo,” and Avril Lavigne’s “Keep Holding On.”
Nightwish remained a staple for the next year or so, with the addition of Evanescence, Poets of the Fall, and Within Temptation. During that time I struggled with severe depression while waiting for a diagnosis and then again after I was told I had fibromyalgia and they couldn’t help me. Within Temptation’s “Pale” and “Stand My Ground” were very important to me. So were Evanescence’s “Imaginary” and  “Bring Me to Life.”
As I questioned and then challenged my religious ideology, Within Temptation’s music really spoke to me, particularly “The Truth Beneath The Rose.”
When my first marriage began to fall apart I found comfort in Evanescence’s latest album “Evanescence.” Songs like “Made of Stone” and “My Heart Is Broken” helped me vent my pain and confusion (I liked to sing them loudly while driving). More

Epic Fail

Well… I didn’t get a nose ring after all. 😦 The man doing the piercing hit a nerve when he was putting the ring in, which made me jerk and he lost the hole he had just put in my nose. My nose starting bleeding like crazy and I couldn’t stop crying from the pain and disappointment. Needless to say, it was an epic fail. My nose is fine now, but I’m not sure I’ll ever try it again. I don’t like pain, and having a hole put in my nose was incredibly painful, and then there’s the trauma of hitting a nerve and bleeding and crying everywhere. I think I’ll purchase a non-pierced nose ring instead, like I’ve seen on Etsy.

I Will Prevail

This past week was an interesting mix of pain, research, and productivity. I felt pretty crummy for most of the week, perhaps due to a weather system passing through. I got a few things done during the beginning of the week, like baking up two loaves of gluten free bread, but I spent most of my time on the couch. Researched a lot about sourdough bread-making. I also did some reading in one of my favorite cookbooks, Nourishing Traditions. By the end of the week I was feeling better and was able to make a loaf of GF sourdough bread that didn’t taste very sour, but was still very yummy.

Today I was superwoman! More

Free Write: Pain

I often turn to writing when I’m upset. I don’t like using this blog as a platform for heralding my woes, so I try to keep the negative stuff in check. Tonight, though, I’m just going to write.

Tonight I am in pain. I wasn’t sure I’d even be able to type this out because my arms and hands were hurting so badly a few minutes ago. I have an icky headache. I’m used to having headaches, always seem to have one in fact, but sometimes they are really bothersome. I’m nauseated for unknown reasons. I feel like someone beat me up and left me for dead. One of my favorite books, Elantris by Brandon Sanderson, features a state of living in which you the characters become un-dead, for lack of a better phrase. One morning they wake up, only to discover that their hair has fallen out and their skin is blotchy and sick looking. While in this state, any damage done to their bodies remains, unhealed, indefinitely. They feel the pain from every cut, bruise, or break – it never goes away, just drives them insane. I think Brandon Sanderson was describing fibromyalgia (he just didn’t realize it), because that’s how I feel so often. More

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