Tuesday, January 25, 2011

HoW i FoUnD mY DiAgNoSiS… My AdViCe..


I am writing today a post for a blog carnival that is to be hosted on one of my favorite bloggers sites.  The Carnival will be posted on the 26th of January.  A blog Carnival is where several bloggers write about a common topic, and one blogger will be the “host” and post all of the links to all of the different posts on the same subject by the different bloggers.  It is a great way to connect with others and increase awareness and enjoy differing perspectives.

TOPIC:  What advice would you give to those, who have been recently diagnosed with an illness or are going through the process of diagnosis? - Any experience or tips you would like to share. Any words to give strength or some straight forward facts. Any clinical information, specific or general. Anything that you feel someone had told you. 

To let you know a bit about PFAM- Patients For A Moment- it’s a patient-centred blog carnival initiated by Duncan Cross to build connections within the community of people who blog about illness, disease and disability.   Thanks to Leslie for carrying it on and to Shweta Chaubey for hosting this edition! 



My thoughts…. for what they are worth..

When I was blasted in the car accident over 6 years ago, the last thoughts on my mind were that the Dr.’s that I would be seeing had no clue what to do with me. 

For as much as one learns in medical school it is never enough.  The sad thing is that I had the idea that Dr’s knew it all, and I was not to question them.  They give that impression they never tell you that they are not sure, and if they don’t know what they are dealing with it is very few who will admit it. 

To get a diagnosis, this is what I had to learn.  Look out of the box.. Not out of the medical establishment, but look toward Dr.’s who would research for you who would continue to refer you to other places.  Who would never get upset if you second guessed there thoughts.  The most defensive were usually the ones with out a clue. 

Look toward others who are suffering right along with you, scour the internet, blogs, support groups of other people.. tell others what is going on with you, writing this blog, and sharing what I was having troubles with was a key factor in one of my diagnosis. 

If you are looking to someone to diagnose you, start with doing what work you can for yourself.  If you are working to help someone else fine a diagnosis you can do the same thing for them.

Make a list: 

Identify everything you can think of symptom wise.  Even the insignificant things.  I began my list with the details of my auto accident.  I also included similar experiences of family and friends, as they turned out to be key in diagnosis of a genetic issue that hindered my improvement.  I just slowly added things as I could recall. 

Start your list, and continually go back to it updating it.  Add also if you can recall the date or approximate date that the symptom happened.  If you’ve experienced things longer than you can recall, make sure that you list those things as well. 

In my life many of the things that I had always thought were “cool” about myself were the things that had been the beginning of some of my troubles, and the key to one part of my mystery. 

Ask others what they see that is going on with you.  You may not be able to personally identify it all.  For example I was having issues thinking.  I still had all of the same thoughts they were now just in slow motion much of the time.  I had just gotten used to the slowness, it wasn’t until someone else shared about it that I recalled the way it used to be for me. 

Allowing others to help, and not turning people away when they offer well meaning advise.  It was a dinner with friends, one of my girlfriends eats Gluten Free… I researched it so I knew what she could have.  Later I realized that I had subconsciously been avoiding gluten and I was feeling better for it.  I spoke with the Dr. we did one of the tests, it came back that gluten was not a problem, the test we did was the easy one, and I really did not want to go through the other one, so I just did my own test to figure it out instead of the more invasive one.  I just stopped eating gluten.  Big changes happened for me.  I am glad I listened to my body.

Have faith that you will find the right diagnosis, with out a proper diagnosis, you many times have no clue in which to head.  However even with out a proper diagnosis, it shouldn’t stop you from doing the best you can to be healthy.  Eating simple foods from basic ingredients, in proper amounts.  Reducing anything that is premade or made with sugars, artificial ingredients, talk to a dietitian many grocery stores have one you can talk to for free that will give you a proper shopping list and recipes as well.

If you are not going to treat yourself well, how can you expect to go to the Dr. and get them to give you their best when you don’t even give your best to yourself. 

Small things, like holding your tummy in for two seconds 10 times a day or squeezing your buttocks, straightening your foot or flexing here and there..  You don’t have to be out running a mile or walking one either.  But what ever you are able to do figure it out and do it.  If someone else tries to do it for you when you can ask them to let you.  As long as you have the spoons for it. 

I fought for myself.  After years of thinking someone was going to figure this out and “fix” me.  I figured out, that I had better get with the program.  I stopped listening to the placation, the extended… Oh, well, you must just take longer to heal, or I can’t find anything wrong…etc.  I stopped.  I took control of what I could and that includes seeing different specialists, and pushing for more. 

One other thing that really helped was having someone else to advocate for me.  My husband who has and had gone through this all with me, who watched and listened to me wretch and moan in pain with every breath, for years, was now becoming my advocate.  When Dr’s wouldn’t listen to me he stepped in.  They listened to him. 

Find yourself and advocate, just another person to corroborate your story to the Dr.  I know it doesn’t seem like much but realize that Dr’s also do not know who to trust or what to deal with first in some cases.  Help them help you.  Help them hear you. 

On the note of writing your symptoms down, also write down what you are doing for yourself to create wellness.  Write that you now drink water instead of soda.  Write that you are avoiding xxxx foods… Tell them that you are doing xyz exercise on your own in addition to what they have already suggested for you. 

Let them know in writing that you are working to help yourself.  If they see you doing your best to help yourself, you will make them a stronger team player for you.  Don’t complain and whine at them.  Keep things as simple and focused as possible, and have a short list of things you need. 

If you hand a list of meds to the nurse that you are needing refills on or wanting to try, she/he can work on that while you are talking to the Dr.  Make a plan to work on this now, and then come back in 2 weeks to work on the rest if you have a longer list.  Or when you book the appointment, ask the receptionist to schedule you for two spots. 

Be nice!  Be very nice.  Make them want to see you.  They are people too.  If you wouldn’t want to be around you then no one else including those whom you pay will want to be around you.  There are other ways of expressing to others how horrible you feel figure out how you can best express how you feel with out it involving blame anger resentment and feelings like that. 

Believe me I am angry, but the anger will kill me.  The happiness I feel focusing on the positives can cure me.  This does not mean I ignore what makes me angry, I just find more positive ways to deal with it. 

I write.  If you are better at speaking then you should vlog (video blog) or maybe you draw, take your time.  I know that my Dr’s put my list of issues and improvements, and discouragements in my file.  I carry this list around to my appointments, updating it every few months or so. 

I used to think that if they thought xyz about me was important that they would ask.  They didn’t even know to ask.  Dr’s forms are very generalized and don’t have room for very specific information that is relative to obscure issues.  These forms also don’t lead you much into telling more information.

When you hand their filled out forms along with your list of issues that you’ve created, that includes dates and symptoms, issues you have as well as what you have tried and are already doing to get better, you can give them a more complete picture.  Don’t forget to list all of your medications, even if they are the one’s who prescribed them, what you have learned from other Dr.’s and what medications you have tried that were not successful.  Be sure to include anything that helped you to feel better, and what makes you feel worse. 

Now that I have figured out what my “diagnosis's” are on that paper I have also written the Doctors who diagnosed me and when.  I include their contact information and any thing else I can come up with that may be helpful. 

Chronic patients are difficult.  My doctor loves seeing me.  I am like a breath of fresh air for his office.  His receptionists like me, they get me appointments easily now, the nurse’s deal with me swiftly, and the Dr. is always greeting me and excited to see me.  My doctor does not know it all, but I am not looking at him to solve it all for me.  I am looking at him to listen enough to what is going on with me to know what direction to send me next and to support me in my efforts, and steer me correctly when I need it.

Now I fully realize that what has worked for me and what I have learned, and what I can do are not going to work for everyone.  However, if this has helped you or given you some ideas as to what may work or what someone else might be going through then I hope you come away happy having learned another perspective.  I know there are those out there who are only able to blink, or may only be able to move their thumb, or may be dealing with dying. 

This is just my story about what has worked for me.  I hope it gives you greater understanding. 

Receiving your diagnosis is just one part of your journey.  If you don’t have one, don’t be discouraged.  Believe in yourself, treat yourself well, and know that you deserve to have as great of a life as you can manage.  Love others and let them love you.  Help others and let them help you.  Life is not a path you should travel alone, so don’t push people off of your path because of how you feel.

Learn to accept how you feel, and learn to accept that no one else in this world can understand exactly what you are going through.  Accept it and learn that what is more important sometimes is trying to understand some one else’s perspective.

As a note it was over 6 years after my car accident that my problems were given a label, don’t be discouraged.  Keep on going.  You are worth it!

Wishing you many blessings, speedy diagnosis, and a pile of love and understanding,

Pink Doberman


P.S. I am a member of the group Chronic Babe  you can be a member too, it is free.  There is a link to it on my blog page, in addition Yahoo, Facebook, Twitter and other places have some very good groups/links where you can connect with others who may be having similar issues.

1 comment:

ruthp said...

I think you are AWESOME Tonja! I think that what you share so openly will help many others get through tough times and find inspiration in your journey, and possibly even educate our medical community!