Sometimes you get to a point where you say "Why the hell not?" But seriously...why not? What have you got to lose? Nothing. What do you have to gain? Everything. At first, the task in front of you may seem daunting - but then you realize that really...it's going to be fun. I don't think there's anything more addicting out there than success.
My beautiful boy Cole. He was rescued from a puppy mill and that was his escape. He was two months old and had never walked but now he can run.
Now he is my escape – every night he lies on the floor next to my bed and waits until I find sleep before leaving the room. My faithful friend.
I was inspired by this photo challenge.
A few months ago I decided to ask for a disabled parking permit for Genny. Every time she needs to get out of the car I go nuts from worry and start counting the steps she will need to take to get to destination. Then of course I worry about the inside of the building, how far she will need to walk and whether she will have to stand. Standing is no longer an option for her and walking is excruciating.
So we got the parking permit and now, at the very least, I can park closer to whichever entrance as required. I know this brings a certain level of comfort to Genny but I also realize it’s always a huge stress for her because standing is so difficult. Still she looks perfectly normal and one wouldn’t be able to tell of her difficulties unless she mentioned them. It may be that since she was tiny, she has had to learn how to function like so and honestly she is doing an amazing job at pretending.
So this little introduction brings me to Montreal last week during our visit to the neurologist. The first thing that happened that sent me to a bad place was when I dropped her off at the autonomic lab for the orthostatic intolerance testing. It was really bad because of course, it’s a HUGE hospital and when I came in I omitted taking a wheelchair because it seemed to me like they were carrying signs for various department and to be honest, I am still somewhat shy about “borrowing” them. BIG MISTAKE. Genny of course was struggling all the way to the lab and was sitting every 10 steps or so – and when there was no seat I thought for sure she was going to pass out. Once we got to the lab everything was good, but I told them we couldn’t get her registered as she couldn’t walk – bad planning. I said I’d go do it and would come back soon. To that, they agreed and it didn’t seem to be a problem. The lady at registration was very kind and understood that my daughter couldn’t be there. That was fine. But then, she told me to go to the “accounting” office which I did. They had to call the “person in charge” who insisted they needed to “identify” my daughter who by the way doesn’t have any kind of photo id card as she hasn’t been in school for 7 years now. I tried explaining that she couldn’t walk and was in a terrible state at the very moment but still, she kept saying “yes but it doesn’t matter, (and finally) next time you HAVE TO bring her over here”. It so didn’t make sense and I so wanted to say NO but then of course I lied and said “OK, we’ll make sure to do that next time”. The so called “boss” just didn’t understand – we were in a hospital setting – how could that be?
Then, a few days after the diagnosis we are walking on clouds. So we decide to go shopping and pick a parking spot with a disabled sign (we have the permit with us) closest to the main entrance. Always as worried for my daughter I count about 15 steps and a flight of stairs of 5, then another 10 steps to get into the mall. I know this will be difficult and again I am holding my breath and thinking that if I can just get her to walk in and sit I can fetch a wheelchair as we are right next to the service area.
When we parked in the disabled area my friend was driving and the first thing she said was “oh no, maybe we should have parked further”. To that I replied “why should we have done that – Genny has a permit?”
It turns our there were two morbidly obese women in their 60′s or so, each of them sitting in their automated wheelchair or scooter. As soon as we got out of the car, the first one yelled out “Hey!!! That parking spot is reserved for the disabled!!!!” I felt like a bomb about to explode but I had to act fast so that my daughter wouldn’t pass out and I pointed to my daughter while my friend was trying to explain that we had a permit and then again, the woman yelled “WELL, WHERE’S YOUR DISABLED PERSON???”
There are no words to describe the frustration and rage I felt at that very moment. Had it not been that I had to take care of my daughter, I think I would have asked them to get off their chair and give it to me. I know this must sound crazy but that is really what I was thinking. I often feel that a number of people with less severe illnesses are granted more services and privileges than people with EDS for so many reasons – some of which are more or less easy to understand.
Genny is slowly accepting the use of a wheelchair and says that the anxiety that comes from using one is less than that of calculating the number of steps to destination which in the end is worth the concession. It also grants her the ability to act as a normal teen, that is to go shopping and that makes me very happy.:) As she slips on a pair of shoes and steps out of the wheelchair to look at herself in the mirror, I realize this is not so bad after all!
In the end, the frustration was all worth while and I will keep using the parking spots and chairs regardless of dirty looks.
I was prompted to write this after reading this post. Walking can be so difficult for people with EDS and it breaks my heart to think that people in general have no clue of what it means.
Someone told me very good things happen on the 8th.
On the 8th of May, we saw a neurologist who runs an autonomic lab in Montreal. After 3 hours of testing, including among other things a tilt table test, we were told my youngest daughter has:
1) Orthostatic intolerance (OI) – which has been left as is for way too long as she is now “severally deconditioned” as he put it – unless we act now, her state will worsen. At this point she can barely walk ten meters without sitting and that is on a good day. There have been a few days lately where she can’t even get out of bed to use the toilet – it is very scary to me and there are no words to describe how she must feel.
2) The OI results from a “connective tissue disorder” – the type needs to be confirmed by a geneticist because my daughter insists for an official diagnosis – the doctor was floored by the tricks she could do with her toes.
3) Intracranial hypotension – the headaches are relieved when she lies down but are otherwise constant (I had no clue since she rarely complains about anything). I am wondering now whether the pressure from the back flow is not the cause of her panic attacks. If there is any level of pressure on the amygdala, also known as the brain’s center of emotions, this could be the case (such as in Chiari malformation). I remember looking at her brain MRI results not too long ago wondering if she didn’t have that problem but it was negative. Then again, if my daughter’s multiple endocrine disorders are related to a collagen disorder, abnormal functioning of the amygdala would also be plausible (my own reference here). Here’s an interesting article on intracranial hypotension.
4) Her aldosterone is high (three to four times the upper normal limit) because her body is crying out for “more blood” is how he put it. I have been told by other doctors that her aldosterone levels are considered normal because the adosterone/renin ratio was normal (what????).
Her treatment for now:
A recumbent bike for exercise, physiotherapy for reinforcing her ligaments, rower (anything where she doesn’t have to stand for now)
3 liters of water a day
Salt tablets for loss of sodium
Additional drug treatment to help with the arteries (to be determined)
When I told our family physician about the diagnosis, she was relieved yet upset that it had been such a long process to prove what she had determined from the start in her own office. She insists my daughter be seen by a connective tissue disorder specialist so that she can be diagnosed for it and cared for the appropriate way. She also believes her multiple endocrine disorders are related to the connective tissue disorder. I totally agree with that as connective tissue is the matrix within which cells are supported and communicate. What is there not to understand?
Today I emailed the lab asking if the neurologist would be willing to refer my daughter to a geneticist in Montreal who is apparently well-known for EDS. This doctor came highly recommended by a parent from Montreal whose daughters were diagnosed there years ago – thanks to Facebook.
It will be a week since my daughter was told it was not all in her head. These few words had an amazing effect on her. Her mood has changed considerably and her willpower seems to have escalated to a new level.
I am so very grateful for this new development and hope that more will be coming our way in the near future so that we can get on with our lives.
Hooray for the 8th.
Although I’m in avoidance mode, I still have so many things to say. Last week’s daily post “Freaky Friday” got me thinking – oh and how I wish I could swap this whole situation with someone who actually deserves
to understand it (why am I being so nice?).
For just one day, if I could, and since my daughter and I are one in her illness (she would have to be included) – I would swap her health with that of all the doctors who did not listen and told her and still tell her she needs to start exercising and attending school again, or the ones who say there is nothing wrong with her and that her condition is “normal”.
I would hope for a day like yesterday; a day where she could not get out of bed, not only because she was in such pain and so weak, but because her body was literally like gelly – like that of a gummy bear who was left in the sun for a little too long.
And I would sit in their chair and meet with all these now sick doctors and show them how I use my knowledge and compassion to determine why they are feeling that way.
For just one day and maybe they would actually learn something for once and know how to make a difference.
I’m spiraling downwards forever before I get the chance to grab on to a branch to save myself. it seems to be a recurring pattern. What sets me off it seems is one bad news after another which becomes, or at least appears to become, an inevitable an recurring process.
So I’m at this place where I’m trying to avoid this whole situation that has become my life. Isn’t that sad? This blog was suppose to help me relieve some things to hopefully get me to a better place but I am so hating this whole process of not getting anywhere that I’m now avoiding my own blog.
I’m usually quite resilient and optimistic but am now sitting on the other side of the fence.
I need to get out of this rut before it swallows me!
Yesterday was the long awaited appointment for the possibility of a diagnosis related to my daughter’s joint hyper mobility and the other symptoms that “seem” to come along with it. It took us 8 hours to drive there because of bad weather. By the time we settled in at the hotel, she was so exhausted and sore from the drive that I had to fill her with Advil and Tylenol. Plus she had some sort of virus and has a lymph node the size of a golf ball on the right side of her neck.
I thought for sure the appointment would get us somewhere – at least I was hoping it would. I know I’m not crazy and I’m not making all of this up. She is hyper mobile – and according to the NCBI diagnosis criteria, it looks like she has EDS type III. Reading an expert’s content for physicians, Typical features of the Ehlers-Danlos Syndrome Hypermobile type (EDS – III), the condition is also most likely.
I have to admit I had a certain amount of doubt regarding the appointment as I know EDS is not well understood among doctors – unfortunately, I was right.
We were told this: 1) She doesn’t have EDS (for sure) because she has no heart defect and her skin is not stretchy on her chest area; 2) She needs to go back to school; 3) She doesn’t need physiotherapy; 4) Some people are just like that (about pain); 5) It’s a very good thing – she can go right ahead and exercise without risk of hurting her joints as there is no danger, full blown exercise but she won’t be able to run – ever; 6) She needs to do yoga.
Are you kidding me? No, more like “Are you f***g kidding me!?”
1) People with EDS type III or JHS don’t necessarily (probably rarely) have heart defects nor do they necessarily have stretchy skin;
2) She is brilliant and is not in school because she can’t walk or sit for any f***g amount of time (is that clear???). Plus she can’t hold a pencil anymore because her fingers hurt too much.
3) Physiotherapy is changing her life – it is giving her confidence and helping her reinforce her back muscles and ligaments which she doesn’t know how to handle on her own (Is this is bad for her?);
4) Pain? Except for people coming out of the OR or with severe orthopedic injury, I have never seen anyone with that kind of chronic persistent pain. What are you saying???
5) She can exercise without hurting her joints? She can’t move or do anything without feeling excruciating pain afterwards.
6) We’ve tried yoga when she was hospitalized – that’s way back when she was able to walk yet she couldn’t put up with an adapted yoga session.
This doctor is suppose to send “recommendations” to our family doctor.
So then what? Is this fibromyalgia (she scores 18/18) with hyper mobility (I think it’s rather rare and most of these patients are thought to be EDS patients)?
So we are back to square one.