Saturday, December 29, 2012

Bipolar Opinions

Our cat, Orwell, suffers from the same disorder as I do...





Have a lovely weekend! 
xo
dani

Monday, December 24, 2012

IV Saline for POTS, Take One!

As you know, I talked to my doctor about IV Saline treatment for Postural Orthostatic Tachycardia Syndrome (POTS) recently. He thought that it was definitely worth a shot; after he got the insurance to approve it (at 100%!), I had my first session.


Home Reach, a home health care company, sent a nurse out to my house and we did the first infusion Friday night. It was all so lovely, I felt like a queen. That afternoon, a pharmacy dropped off all of the supplies to my doorstep, and then the nurse used the supplies (saline, gauze, IV pole, gloves, tape, etc.) to give me a liter of IV Saline. It took about one-and-a-half hours to run the bag through, and we filled out paperwork together while the drip was going. The whole process was so smooth and so easy, and I didn't even have to get off of my heating pad.


We are going to do a one month trial and see if the saline makes a difference in the way I feel, overall, and if it helps my POTS symptoms and/or chronic fatigue. The nurse will come out twice a week, and each session we will run one liter. During the interim, I will have the line left in place - for a month straight I will have a tube sticking out of my arm. Right now, it isn't very comfortable, so I can definitely see why having a port (portacath) would be much better. The IV is getting snagged on things and getting knocked around, which doesn't feel great. Having access in my chest, for the long-term, would be ideal. So, if this works, I will have a port put in.


It has been two days since my infusion. I can say that it made me feel good that night and maybe half of the next day. I am back to feeling sluggish today, and quite a bit POTSy today, too. So, what it seems like, from at least the first session, is that it is has pleasant but short-term effects. This is fine, as it is what I expected. Optimally, I can see having a port and running a bag of saline every day or every other day, depending on what the doctor recommends/allows.


For those who don't know, a port is a small device that is placed below the skin that provides direct access to a vein, so you don't have to dig around for a vein every time you need an IV. They are usually placed in the chest and go into a vein close to the heart. If you have a port, typically, a home care nurse comes out once a week to change the bandages and access, or de-access the port. If your port remains accessed, they can teach you to run your own fluids during the week. Sounds fantastic!

I will keep you posted on how the next sessions go and if it seems to be helping or not. The only negative I have so far is the accessed line in my arm is annoying and a little painful.

Hope you all have happy holidays and enjoy the time to reflect on the positive things that have happened over the past year. For me, getting engaged was the biggest and best.

Much love and light!
xo
dani


Sunday, December 23, 2012

Best Ankle Braces Ever

Hey all! I had a special request from a friend, so I am finally getting around to posting my much-delayed but ever-important information about ankle support. I have my favorite braces/splints listed below and I discuss why I like them, how to wear them, tips for cushioning, and shoes they work with in the video.



These are my favorite ankle braces, MalleoLoc by Bauerfeind:




Bauerfeind USA contact information:

Jim Johnson
Eastern Regional Sales Manager
Bauerfeind USA, Inc.
Office (423) 468-4593
Cell (404) 697-4092
**If you are outside of the U.S., Jim can probably direct you to the right contact.

Jim will be able to help you get the right size for your feet and also help you get in touch with a third party to help bill your insurance. He is fantastic. 

If you work with Brian at XCL Medical, he is wonderful as well. He was my third party representative and was so helpful. 

 Pardon the dog and cat hair all over my socks! Ha!







Meeko and Raina approve of Mama being a happy camper with stable ankles! :)


Hope this provides help to all of you with ankle issues!
Love, hugs, and sunshine!
xo
dani

Saturday, December 22, 2012

Happy Holidays: Pefect Time for a Nutcracker Not-Suite

A while back, one of my readers mentioned something to me called Nutcracker Syndrome and recommended looking into it as a possible cause for my flank pain. With every new document I read, I became more and more convinced I needed to be tested for the syndrome. The description of the pain was exactly as I described my flank pain: writhing, hot, twisting, deep. Also, hematuria is a symptom, meaning blood in the urine with no known cause. I have hematuria. The only problem, Nutcracker Syndrome usually occurs on the left side of the body, and my flank pain is on the right side. Then, I found two case studies of a man and a woman, both of whom had Inverted Nutcracker Syndrome, meaning on the right side. I jumped for joy at the thought of a possible diagnosis for my four-year-long adventure in the land of flank pain. I took all of the studies and piles of paperwork to my Primary Care Physician, aka Amazing PCP, and he sent me on to the nephrologist (kidney doctor).

My nephrologist is awesome. Beyond awesome. Not only did he believe me when I told him about my symptoms, but, he agreed that it seemed like I could very well have Nutcracker Syndrome, complimented me on my research skills, and then tried to convince me to go to med school and become a doctor. Ha! I am happy helping people from my couch, when able, which is all I can do, but I greatly appreciated that he took me seriously. It is so nice working with a doctor that respects that I know my body better than anyone, and, in turn, that I know the doctor is smart. That way, we are both able to work together for the betterment of my health. It made for such a nice pairing.

About to get my IV line inserted at the hospital.
I went in to the hospital for the tests, a CT Angiogram of my pelvis and a CT Angiogram of my abdomen. Both of these were necessary to get a grasp on how my veins and arteries formed and how they enter and exit my kidneys. The test was easy, just an IV line for contrast and a quick jaunt in the CT machine. Twenty minutes later, I was back in my car and waiting to hear from my doctor about the results. Less than a week later, it was confirmed: I have Nutcracker Syndrome. But...here's the catch: Nutcracker of the left renal vein, not the right. What?! So...now, it is confirmed that my veins and arteries are entirely messed up by my left kidney, but the nephrologist doesn't think that could cause my right-sided flank pain. Oh no! Now, I have another rare and random diagnosis, and still no answers regarding my flank pain. Gah! I am frustrated to say the least; disappointment and anger also followed suit. I prayed for the diagnosis of Nutcracker Syndrome because I thought it would lead to a fix for my flank pain, but I forgot to specify which side of my body. Ha!

IV line ready for contrast when I get the CT Angio.

Bruising from the IV line.

Now, I know you are wondering what exactly Nutcracker Syndrome is, so here are all the details:

According to Wiki, Nutcracker Syndrome (NCS), aka Nutcracker Phenomenon, Renal Vein Entrapment Syndrome, and Mesoaortic Compression of the Left Renal Vein, is the compression of the left renal vein between the Abdominal Aorta (AA) and the Superior Mesenteric Artery (SMA). Basically, this means the left renal vein is being squished in between the Aorta and the SMA. The gonadal vein drains from the kidney, and because of the compression, my gonadal vein is dilated (enlarged, swollen), and they suspect reflux (fluid leaking backward) as well.

Here is an example; this is from my CT Angiogram:


I altered this image below (unknown source) to help you look at this from two different angles. My renal vein looks like the "squished renal vein," it is being pinched in between the Aorta and SMA. From this image, you can see where they got the name Nutcracker, as the AA and SMA are like the handles and they are pressing in on the renal vein like a nutcracker would squish against a nut to crack it open.



Here are a few more images from my CT Angiogram:



I have no idea what is being shown in this image beside my kidney.

So what does all of this mean? Treatment is varied, depending on the patient, so I will have to wait and see what route we are going to take. It could be as simple as just leaving it alone and monitoring it. I might need to have the renal vein stented. Or, I may need major surgery to redo the actual anatomy. In order to determine the best route of treatment, my nephrologist is sending me to the best kidney and urology hospital in the country, The Cleveland Clinic's Glickman Kidney and Urological Center. I will be seeing a doctor that specializes in Nutcracker Syndrome, and he will help me determine what course of action is needed. I am still holding out hope that somehow this will be related to my right flank pain and that treating this will ease the pain, or that the doctor has another idea of what might be causing my pain. Either way, I am really looking forward to this appointment so I have some answers. Waiting is hard, especially when you know there is something wrong with you and you don't know how to fix it. 

I feel very confident in the hospital I am headed to. For 2012/2013 they are ranked as the #4 hospital overall nationwide, and the #1 hospital for Kidney and Urological Disorders, and recognized globally for their kidney care:



Going down the Nutcracker Syndrome and Nutcracker Phenomenon rabbit hole has led to some interesting discoveries.


Dinet reports a link between Postural Orthostatic Tachycardia Syndrome (POTS) and Nutcracker.

Nutcracker has reportedly produced POTS symptoms in some individuals. Nutcracker phenomenon (NC) is the congestion of the left renal vein due to its compression by the aorta and the superior mesenteric artery (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The main and common findings of one study on pediatric NC patients were chronic fatigue associated with orthostatic hypotension and/or postural tachycardia (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The authors of this study point out that "the originally reported symptom of NC is renal bleeding. However, reported 'renal bleeding' patients, including ours, have no complaints of chronic fatigue and our 'chronic fatigue' (NC) patients have no renal bleeding". Some of these patients did report fibromyalgia type pain. Some patients had proteinuria,others had no urinary abnormalities.
The authors of this study explain the various ways in which NC might affect autonomic function: First, severe congestion in the kidney may cause the expansion of the renal venous bed, which would affect the renin-angiotensin system. Secondly, severe congestion in the adrenal medulla, which is innervated by sympathetic nerves, may disturb a complex set of central neural connections controlling the sympathoadrenal system. On the other hand, overproduction or night retention of catecholamines might be responsible for the various symptoms of pediatric chronic fatigue syndrome (Takahashi, Ohta, Sano, Kuroda, Kaji, Matusuki & Matsuo, 2000). The nutcracker phenomenon occurs in adults as well as children. Transluminal balloon angioplasty has successfully been used to treat compression of the left renal vein between the aorta and superior mesenteric artery (Takahashi, Sano & Matsuo, 2000). 
The methods used to diagnose nutcracker phenomenon include Doppler US, MRI and three-dimensional helical computed tomography. Dr. Takahashi (personal communication, September 8, 2002) explains the procedures for testing as follows: Conventional ultrasound requires patients to be examined for left renal vein obstruction in 4 positions: supine, semisitting, upright and prone. Nonvisualization of the left renal vein lumen or absence of the left renal vein wall between the aorta and superior mesenteric artery is regarded as signifying left renal vein obstruction. Doppler color flow imaging can be used to locate a blue-colored blood stream flowing to the dorsal direction. This is a collateral vein flowing from the left renal vein into the paravertebral vein. With MRI, oblique coronal images along the left renal vein, and also axial images, are recommended to visualize the collateral veins around the left renal vein. Read more

NCBI reports a link between childhood chronic fatigue, POTS, and Nutcracker.

Does severe nutcracker phenomenon cause pediatric chronic fatigue?

Background: In the past five years we experienced 9 fatigued disabled children who were intermittently or persistently absent from school. 
Patients: They had been suspected to be burdened with psychosomatic disorders, having orthostatic hypotension, postural tachycardia, or other autonomic dysfunction symptoms. 
Results: Investigating the cause of moderate orthostatic proteinuria in some of them, we found by chance severe typical nutcracker phenomenon (NC), which was present in all 9 children complaining of chronic fatigue.
Conclusion: Their symptoms filled the criteria of childhood fatigue syndrome or idiopathic chronic fatigue (CFS/CF). An association between severe NC and autonomic dysfunction symptoms in children with CFS/CF has been presented. 

There's a reported link between CCSVI (Chronic Cerebrospinal Vein Insufficiency) and Nutcracker Syndrome:
From the nutcracker-phenomenon of the left renal vein to the midline congestion syndrome as a cause of migraine, headache, back and abdominal pain and functional disorders of pelvic organs.

Dr. Diana Driscoll reports a link between CCSVI (Chronic Cerebrospinal Vein Insufficiency) and Ehlers-Danlos Syndrome (EDS):


On January 2nd, I head up to The Cleveland Clinic, so I will keep you posted on the progress. Until then, I will be sitting on my heating pad and popping my Norco. Hope you all have a wonderful holiday(s)! 

xo
dani

Thursday, December 6, 2012

Prolotherapy Session Numero Uno: OUCH!

As you know, I've been contemplating prolotherapy for my chest, the sterno-costal area, to see if we can stabilize the bones so I don't have as much pain. I went to one doctor who was arrogant without merit and also expensive, so I searched for someone else. I found that doctor, thankfully, here in Columbus, and went it to talk with her yesterday.

Right away, I knew I was in for a good appointment; her down-to-earth demeanor and willingness to discuss my concerns with regard to EDS and prolotherapy made quite an impression on me. We chatted about the idea that prolotherapy might not work for someone with Ehlers-Danlos Syndrome, at all, or it may work for a while and then eventually the tissues would be back to their normal stretchy selves and I would be back at square one. She talked about other patients she sees, with success, who have EDS, so she was familiar with the concerns and she was understanding of my apprehension. In the end, I decided to move forward with the controversial treatment and had my first session after the consult. The winning straw: she only is charging me $180 a session! I will do one session a month for four to six months, then we will reassess.

In case you have forgotten what prolotherapy is, my doctor, Dr. Boone, has a great handout:

"What is Prolotherapy?

Prolotherapy is a simple technique that stimulates the body to repair a painful area when the natural healing process needs some assistance. It involves the treatment of two specific kinds of tissue: tendons and ligaments. A tendon attaches a muscle to the bone and aids in movement of the joint. A ligament connects two bones and aids in the stability of the joint. A strain is defined as a stretched or injured tendon; a sprain, a stretched or injured ligament. Once these structures are injured, the immune system is stimulated to repair the injured area. Because ligaments & tendons generally have a poor blood supply, incomplete healing is common after injury. The incomplete healing results in these normally taut, strong bands of fibrous or connective tissue becoming relaxed and weak. The relaxed and inefficient ligament or tendon then becomes the source of chronic pain and weakness*.

Prolotherapy involves the injection of a solution generally consisting of dextrose, lidocaine (an anesthetic), and vitamin B12, which causes a local inflammatory response. This localized inflammation triggers the body's own healing cascade, resulting in the deposition of new collagen**, the material ligaments and tendons are made of. New collagen shrinks as it matures, tightening the structure that was injected and making it stronger. The resulting ligament & tendon tissue can be thicker and stronger than normal tissue, up to 40% stronger in some cases.

A typical prolotherapy treatment plan involves 4 to 6 sets of injections, done in series. Anywhere from 3-10 sets of injections may be necessary depending on the complexity or chronic nature of the problem. Each set is done 2-4 weeks apart and may involve the injection of several different sites around the joint being treated. Prolotherapy has a cumulative effect; each treatment builds on the previous one to increase tissue strength and improve joint stability. Over time this will lead to the desired effect of pain relief. You should not assume prolotherapy will not work if you do not see benefits after 1 or 2 treatments. In some cases, because of nutritional, metabolic, or hormonal abnormalities, your body may not be able to mount an adequate healing response. If you do not experience any improvement in your symptoms after 4 treatments, chances are you will not respond to prolotherapy and additional treatments are usually not recommended. Once a plateau in improvement is reached, treatment will stop."
*All of my tissues are relaxed and weak.
**The controversial part of the treatment for EDSers stems here: will creating more faulty collagen stabilize the joint or not?

Why? What made me decide to move forward?

The pain has been so bad. Period. I am willing to try anything, at this point. I am looking at it like this: for a while I was spending $200 a month on massages. Every week I would go in, pay $50, and get my entire body massaged. I would leave feeling rested, relaxed, and nice, but by nightfall, I was back at the same level of pain as before the massage. The benefits that I felt were very short term. I know there were benefits I didn't see, like flushing my body of toxins, but I am so strapped for cash that I have to make the most of my money. I wasn't getting relief worth the money. So, I stopped going. I am no more worse for wear.


I am looking at prolotherapy in the same light: I will go once a month, pay $180, and get injected. I will leave no worse for wear (besides the injections being painful), as prolotherapy isn't thought to do any long-term damage, unlike the steroid injections I was also contemplating. If it doesn't work, then I am the same. If it does work, brilliant. If it only works for a year or two -- that is a year or two that I will be in less pain, and I will take that happily. If I have to do four to six months of prolotherapy every couple of years to keep my chest in check, to me, that is worth it. I am desperate, at this point, but not stupid. I understand the risks, I understand it may not work, and I am willing to give it a shot. Well, ten, actually.

The doctor used a mixture of dextrose (sugar water), lidocaine (to numb the area), and vitamin B12. She injected each side of my sternum, vertically, five times, for a total of ten injections. It was rather painful, just as painful as the epidural injections, but also was creepy because of the sound the needle made breaking through the tissue. Because of my weight (I am thin/average) and the location, she wasn't concerned about placement being an issue, and she did the injections freehand. If I were overweight or the prolotherapy was going to be done in a different area, I may have sought out a doctor who did prolotherapy guided by x-ray, but she assured me that it was unnecessary. We could have used her ultrasound machine, but she could see what she was doing in my bony chest well enough.


That is one set down. I am sore and my chest wall feels irritated, but not bad. The injections were quick, thankfully, and so far they were the worst part. I will keep you post on my progress.

Lots of love to you all.
xo
dani

Thursday, November 29, 2012

Quick...POTS!


 Seattle, WA, actual sign in the alley!


Stop, look, and listen! 
Stop, drop, and roll!
STOP ahead, POTS ahead!

Some days are just POTSy days...


Apple-flavored Pedialyte, hooray!



Peripheral Neuropathy is super annoying!




 Hospital stay for Dad-in-Lawesome means stealing
the leg-a-matron thing-a-majiggy,
help to get the blood moving in my arms again!



(Image source unknown)

May your POTS stop for you today, at least briefly!
xoxo
dani

Wednesday, November 28, 2012

A Ton of Bricks Sit Upon My Chest

I've been having very bad chest pain...



The ortho and I have discovered that I have too much motion in my sterno-costal region, the upper portion of my front rib area, and it is causing severe pain. While we aren't quite sure what to do to ease the pain, we are looking into several options; one being prolotherapy.

Prolotherapy for Ehlers-Danlos Syndrome is very controversial. To explain what exactly it is, I will refer to the notes I took from a lecture by Dr. Scott Greenberg at the 2010 EDNF EDS Learning Conference.



Curing Chronic Pain with Prolotherapy **Controversial in EDS treatment**
Lecture by Dr. Scott R. Greenberg

Hipocrates – thought to be the 1st person/doctor to use prolotherapy (created by scarring tissue via hot pokers).

Prolotherapy:
  • A series of injections that stimulate the immune system to cause the PROLIFERATION of new ligament, tendon, and joint tissue.
  • Importance of Tendons and Ligaments:
    • Provide joint strength
    • Provide joint flexibility
    • Provide basis of range of motion
    • Relay info to the body about a joint’s position
    • Send signals to the brain regarding joint damage in the form of pain
    • Refer pain in a similar fashion as a nerve
  • Ligaments and tendons will usually not heal on their own when they are more than 6 weeks old
  • Prolotherapy is not usually covered by medical insurance.
  • Prolotherapy is a long-term cure. *according to this doctor*
  • Prolotherapy – joints heal/regenerate better than the joints one is born with.

PRP (Platelet Rich Plasma):
  • Different than prolotherapy
  • Only used on worst joints because it is expensive
  • Concentration of platelets, growth factor and plasma made from your own blood.
    • Works faster than Prolotherapy but causes more pain and inflammation, soreness, and is pricey.
Can use both Prolo and PRP:
  • Usually can inject PRP in joint and Prolo around joint.
 Wide range of treatment times:
  • Some people require just a few sessions, other require 1+ years of treatment.
(Pain is in entire sad area.)

Some additional information I found:

  • A video by a doctor that does prolotherapy on EDS patients (it is important to note there are positive and negative comments below the video, all of which I am taking into account). 
  • A first-hand blog entry from an EDSer (bubblegirl) who had positive results with prolotherapy.
  • A very long chain of comments on the Inspire forums (EDNF) wherein most people have negative views of prolotherapy, and the EDNF staff doesn't recommend prolotherapy because there isn't enough evidence to back it up.

In conclusion, I am a bit confused and not sure the route I will be taking. I talked to Dr. Brad Tinkle about prolotherapy and he recommends trying everything else possible before attempting prolo, like splinting/bracing and taping. Unfortunately, I can't do tape and my ortho has no options for bracing that area. Dr. Brad did mention that it would be more likely to work in the area I am having issues (sternum), because, like the tailbone, it is an area that isn't supposed to have a lot of motion. He made it seem like prolo wouldn't be a particularly good choice for an EDSer on a joint that has a lot of motion, like a knee. While I am still toying with the idea, I am leaning toward not doing prolotherapy right now. It is expensive, painful, and there is not enough proof that it will work for my liking. For now, I am scheduled for a session but I am just letting it sit with me for a bit...I may be cancelling the appointment.

xo
dani

Tuesday, November 27, 2012

Talking to the Doc about IV Fluids for POTS

Hey friends and fellow POTSies...

Are you thinking about IV saline for your Postural Orthostatic Tachycardia Syndrome symptoms? Do you have friends that get IV fluids and have you interested in taking the first step? Do you want to know how IV fluids can help POTS? Well, if you said yes to any of these, this post is for you! I am on the journey myself, and I thought I would share the process.

2010 marked the first year I had heard that IV fluids could be of help to someone who has POTS; a researcher that was presenting at the EDNF EDS Learning Conference spoke of her success with fluids and immediately I was interested. Unfortunately, my doctor wasn't. She said, with a stern face, "No way." I just let it be, as I had other things I was focusing on at the time, and forgot about it for about a year. Then I started my search into how exactly I could go about getting IV saline, and it turned out to be a long battle that is slowly resolving --- and, I might be on the saline train soon!

The quick summary: fluids can increase your blood volume, trick your body into thinking there is more blood, then your body stops freaking out and you feel better. Simple as that.

Here is all of the info I could gather to help you in your journey, or so you can follow along with me and see if it works before trying it yourself. I am happy to be your medical guinea pig (though, I am a willing participant and would never actually encourage testing on a little rodent)!

My two recommendations:
  1. Watch my video.
  2. Read POTSgrrl's guide on POTS and IV Saline. Seriously, her blog post will be your most useful tool, providing you info to bring with you to your doctor. 



Information you might find useful:


Enjoy and good luck!

xo
dani

Wednesday, November 14, 2012

Playtime at the Hospital: C1-C2 Instability

Thanks to Ohio State University (OSU) Medical Center's library, which unfortunately was made available to me as a visitor because my dad-in-lawesome was having emergency surgery, I was able to play with a model spine and make a quick video to briefly describe C1-C2 instability. Hopefully, this will give you a better idea of what I spoke about in my last post. I am still set to have the fusion surgery at the end of February. Until then, the doctor's written me a prescription to get a neck collar to wear when I am having stability issues or pain. I will be getting the Miami J Collar with the opening in the front, which will make it easier to wear since I have problems with things being tight around my neck. Until next time, enjoy your day and take a moment to pat yourself on the back for being such wonderful people. I am so thankful for each and every one of you - my readers.

 

Love, hugs, and autumn leaves! 
xo
dani

Monday, October 15, 2012

My Head's About to Fall Off...Literally. Hello Surgery!


Hey friends and family...

Pardon the short post, but my arm is not better and I can't type much; instead, I chose to do a video to explain my latest medical drama to you all. It was rather complicated to explain this over the phone to Mama, so I chose to make a video complete with images and explanations in hopes this will be a better tool to help you understand what I am going through. I will be having major neck surgery for cervical instability, a C1-C2 fusion. I also have 2 herniated discs, C5/6 and C6/7, and will be waiting until after this first surgery to decide how to proceed with those. I know many of you will have questions - hopefully this will answer most of them. I hope you all are well and hanging in there. I know the POTSies are loving the break from the summer heat - I sure am!


Lots of love and hugs!
xo
dani

Saturday, October 6, 2012

My Beautiful EDSer Friend Swims Upstream in Toronto

My darling friend, Nakki, is making waves, complete with her port and saline solution in hand, in the Toronto Sun. Way to go, Nakki! She is one of the bravest and most fearless friends I have; I admire her strength and courage, and I love that crazy awesome fight she has in her. I support and love her. Here's a giant high-five to getting attention for EDS in a large newspaper and online, standing up (POTS and all!) for her medical needs and a surgery she was already approved to have until it came to cutting time, and being a survivor and hero. As she always tells me, I say it back to her: just keep on swimming, Nak. You will prevail and help many others in the process.

Nicole Ottaway, in her house October 3, 2012. Ottaway is suffering from EDS was refused tubal ligation by St. Joseph's hospital despite the fact that getting pregnant would be dangerous or deadly for her. They won't do it because they are a Catholic hospital. Photo by Dave Abel/Toronto Sun/QMI
  
*If you wish, click on the headline below to comment on the Toronto Sun's article and show your support for Nicole Ottaway!

Toronto hospital denies potential life-saving surgery on religious grounds

Nicole Ottaway is a young woman with a rare, serious disease — so rare, in fact, that it took doctors years to finally make the diagnosis.

Ottaway has Ehlers–Danlos Syndrome (EDS), a genetic disorder that affects the connective tissue, caused by a defect in the synthesis of collagen.

The incurable disease affects the digestive and cardiovascular systems, causes spinal deformities as well as a wide range of other symptoms.

In light of her disorder, Ottaway, 30, has made the decision not to have children.

For three years, she searched for a doctor willing to perform a tubal ligation operation.
She was turned away. Most doctors refused to perform the surgery because of her age.
Others were reluctant to do it because of her complex medical history.

Finally she found a doctor who’d do it. The first appointment went well. Then the doctor’s office phoned with the bad news.

The doctor only had operating privileges at St. Joseph’s Hospital — and they wouldn’t allow a sterilization procedure to take place there because they’re a Catholic hospital.

“I don’t think they realize how dangerous being pregnant and having babies is for people with EDS,” Ottaway told me in an interview in her west Toronto home this week.

“I have a feeding tube in my chest. My whole neurological system is a mess. There’s no way I can handle being pregnant,” she said. “No way.”

When she initially requested the sterilization procedure, Ottaway was in a relationship. She still hopes one day to have children — but only if she can adopt.

In a report on her decision to have her tubes tied, the doctor had this to say:

“Today we discussed permanent sterilization. I do believe this is indicated since she is high risk for fetal genetic defects as well as medical complications during pregnancy.”

The hospital still refused — and Ottaway wasn’t allowed to appeal the decision.

Ottaway is recovering from stomach surgery, needs canes to walk and sometimes has to use a wheelchair. She used to teach autistic and developmentally delayed children, but has had to quit work. She’s dislocated her neck many times, gets frequent headaches and migraines and will likely need spinal surgery.

Ottaway was told to go to another hospital, but that’s not an option, since she can’t find another doctor willing to perform the operation.

“Everyone said I was too young and I was making the wrong decision.”

Besides, she believes she’s the person best equipped to make such a personal choice.

A spokesman for St. Joseph’s refused to comment specifically on Ottaway’s situation, but directed me to the Health Ethics Guide that governs Catholic hospitals.

It says: “Direct sterilization, whether it is permanent or temporary, for a man or woman, may not be used for the regulation of conception.”

It directed readers to another section which said, “It is unethical to cooperate formally with an immoral act, i.e. directly to intend the evil act itself. But sometimes it may be an ethical duty to cooperate materially with an immoral act, i.e. one does not intend the evil effects but only the good effects, when only in this way can a greater harm be prevented.”

Ontarians overwhelmingly rejected faith-based schools, yet we have religious rules governing publicly-funded hospitals. People of all faiths use these hospitals, most of them unaware that they’re subject to the dictates of the Catholic church.

Ottaway’s frustrated by what she calls a “taboo,” about a young woman getting her tubes tied.

For her, it’s not a moral issue. She has no choice.

It’s a matter of life and death.


Friday, September 7, 2012

Calling All Woman Haters

Hey friends! I am still recovering from typing up the conference notes (my wrists and elbows are very inflamed) so I don't have any long EDS related posts for you yet, but I am slowly working on a bunch. Heavy emphasis on bunch. I have so much stuff I can't wait to share with you! For now, though, something that is very near and dear to me: standing up against abuse. As you know, I am an abuse survivor and I have a new anthem: Alanis Morissette's new song Woman Down. I wanted to share the music and lyrics because they really hit home; I relate so much to the character in this song, being a daughter who was abused by my father figure. We don't have to take abuse of any kind - from men, women, young, old, rich, poor. No one has the right to harm us. Definitely worth a listen - enjoy and be empowered!


Woman Down:

First woman down was your mother
She did condone how you behave
All you could see was your father
His disrespect was in her face
Next woman down was your sister
Her silence did corroborate
She took her cues from the climate
And never knew another way
Who do you take me for
Calling all woman haters
We’ve lowered the bar on the
Behavior that we will take—come on now
Calling all lady haters
Why must you vilify us
Are you willing to clean the slate?—woman down
Next woman down was your lover
She takes your spite at value face
Even her hair length and color
Gives you the impulse to repeat
Who do you take me for
Calling all woman haters
We’ve lowered the bar on the
Behavior that we will take—come on now
Calling all lady haters
Why must you vilify us
Are you willing to clean the slate?—woman down
Next woman down is your daughter
A stranger to being debased
She has a new lease and limit
On the abuse she’ll tolerate
Who do you take me for
Calling all woman haters
We’ve lowered the bar on the
behavior that we will take—come on now
Calling all lady haters
Why must you vilify us
Are you willing to clean the slate?—woman down 


xo
dani