Tara's Tips

When Jane asked me to write a post on her blog, after I got past the flattery, I wondered what will I write about? Knowing me, and my Adult Attention Deficit Disorder, it will be a little of a lot of different things.

November, as I am sure we all know, is RSD awareness month. After 17 years of my spouses suffering with RSD I am all too aware of RSD. I do, however, try to seize upon each and every opportunity to promote awareness of RSD. I actually have a couple of “catch phrases” I like to use. One being “You Can’t Cure a Disease Nobody knows about”. There is also the unforgettable, No Awareness+No Research=No Cure Know Awareness + Know Research= Know Cure! Pretty catchy, if I do say so myself. I also try to use what experiences we have gone through to try and help those who are new to the world that is RSD so that they may have an easier excursion through its vast and ever-winding expanse.

Before I go into my “tips” let me provide a wee bit of background for those who do not know my RSD story. My husband has RSD. He had fallen off of a twenty foot ladder while holding a ten speed bicycle. He was a toy store manager. He was 24 years old. Ironically, at the time of this incident, we were separated, and were about to begin divorce proceedings. I was not informed of his accident until he told me when he came the next day to collect our son for visitation. His fall caused him a torn left rotator cuff. It was only recently that I was told how when he was at the trauma center, and the doctor came in, amazed, and he told my husband “You haven’t broken any bones”, that he went on to add almost ominously, “but you may wish someday that you had.” My husband said that it did not even register to him that it was said until years had passed. “He said it like he knew, like he expected this” my husband said when he told me the story, “but how could he know?” I wish I knew the answer to that. I sometimes obsess over it. If he did know, would he say “One day, well after this should be a memory, you will be left with a disease, so painful, and it will be the most painful known to medical science?” Would he tell? Would he say “And this disease, will affect every single body system, your skin, your nerves, your bones.” Would he tell him that “this disease will not only hurt worse than you could ever imagine, but it will age you, and this torn rotator cuff, while it’s in your shoulder, will cause you to one day need to use a wheelchair, and have a pump implanted in your abdomen so that pain meds can run directly to your brain 24/7, but even with this just getting off the couch to pee will hurt like someone is slowly torturing you?” Would he tell him? I doubt it. Scratch that. I know he wouldn’t. There would be no point. I have never seen a doctor tell a cancer patient, regardless of how extensive their illness, that “Well, we are going to fill your veins with so much poison, that sometimes you will ask for God to just take you now. You will vomit while chunks of your hair fall out, and well, if the treatment works, well, there is still a chance to have it return later and even worse.” Why would they steal the hope away from the patient? Sometimes, that is all they have.

After 17 years, all the things the doctor in the trauma center anticipated...they happened. More and more things just like it happened too. We ended up losing everything we had. We had to live with our two children, in his parents’ home to await the resolution of our fight for his Social Security Disability Benefits. That took nearly five years. My husband was fortunate enough to have a remission of his RSD. Very unusual. More than very, he was not diagnosed until 3 and ½ years had passed since that fall. Hindsight being 20/20, he showed all of the classic signs and symptoms of RSD early on. Saddest thing is no one knew what those classic signs were. We went from one discipline of medicine to another, all with the same question. Why does this pain not end? He was a drug seeker, addict, and liar, lazy. You know all those things that people who are hard to immediately diagnose are. Oh and he was crazy too. Somehow forgot that one. The few days locked in a psych facility, being cavity searched at random intervals and denied medical care, how did I skip that?

Fast forward, to twelve years after the “fall that changed it all” I go to school to become a Licensed Practical Nurse. Should have been RN, but I had three men to feed, a little window to get some education done, and those back pay dollars wouldn’t last forever. I quit one job, reduced some hours at the other and managed to graduate with honors. Well before RSD even came into the picture, I wanted to do it. I did not, because I feared failure husband had a good job, he will take care of me. Remission has a way of making people forget. Forgetting makes people complacent. Complacent is never a good thing.

Because of RSD, I really wanted to be a Nurse. When I completed school, I had a job where I was making way more money than I could starting out as a Nurse. But the Nurse thing was a good back up. So I managed a gift shop. I was better to have as an escort for friends and family when they had doctor appointments, but that was really it. The LPN did however make me become much more aware of how issues can arise when one has a chronic illness. Even with a couple of issues I myself have experienced since obtaining my Practical Nursing License I learned that I never offer that I have it when seeking medical care, whether for me, one of my family or a friend that has asked me to accompany them to an appointment. It’s not that I am going “undercover” but it showed me the difference in the treatment when you reveal that “You know the lingo.” It is actually quite funny when the point is reached, when I am getting handed a pile of crap as an appetizer from a “professional” and I KNOW that it’s wrong, wrong, wrong. That is when I say “But Dr. (or other practitioner,) as a Nurse”, or “In nursing school”, and the response is a shuffling of papers, or the screeching of the tires as the total direction is changed. I admit, it never ever gets tiring, seeing that. I then get a totally different reaction. Not that I am given the key to the medicine cabinet, but there is a definite and palpable change in the atmosphere. This leads me to the tips I mentioned, so far back. (I did, you will recall, mention the A.D.D early on in this post.) So here it is,

“The learn from someone who has been there, done that” guide to successfully navigating doctor visits with RSD.

1. Always have a list, and a pen to take notes or someone with you to take them.

• When you are at a doctor, there are many things that will prevent you from catching and grasping all that is being said. The language, just one or two “Huhs?” and the majority of what was said is gone. You try to figure out what that big word is, and you miss the rest. Someone else there would have been a back up copy so to speak. They could help fill in the gaps.

2. Try to gear the list to the Doctors specialty.

• For instance, if you are seeing a Neurosurgeon for the first time, do an internet search using something like “Neurosurgeons and RSD” to help give you some idea as to what you MAY expect. Then gear your list accordingly.
• This will help maximize the visit. You will leave with less, “Oh I forgot to asks...” and “What did he says…?” When you have jotted answers onto the paper.

3. Remember why every single person working in that Doctors office has a job.

• The Doctor and everyone in his employ, they get paid for providing a service. They provide that service to you. Do not accept treatment that you would not accept from anyone else you have called upon to provide you a service. If your plumber said you were crazy after he was called to fix a toilet that he said was not clogged, would you have him come back the next time you needed a plumber? Do not return to a provider that does not treat you as though you have valid complaints.

4. If you do not understand something, ask for clarification.

• Again, you are paying, or someone or some insurance company is on your behalf, for a service. If the mechanic for your automobile said he had to change the “flux capacitor” in order for you to be able to drive it, would you just let him? Because the “flux capacitor” is what enabled Michael J. Fox to go back to the future. Cars don’t have those. Get my drift?

5. Remember, specialists make their money, on doing what they specialize IN. Surgeons, they heal by SURGERY. General Practitioners, they use their prescription pad. See more than one type of doctor. Explore a variety of treatment options.
6. If you want another opinion, get one. Do not worry about “hurting the doctors feelings” by suggesting you would like one. Firstly, they are supposed to NOT HAVE their feelings involved in their patient’s treatment. That’s why surgeons are not supposed to operate on their Mothers. Feelings do not belong on their end of the relationship.
7. Educate yourself as much as possible. You do not have to get a Harvard Medical degree to be able to advocate for yourself as a patient, but educate yourself as much as you are able, and do so a little at a time as too much at one time will just overwhelm you, but you will see that your communication improves between you and the doctor, and your care will reflect that.

• Do not, however, believe ALL that you read and hear. Consider the source. Is the source of this information trusted? Is the source someone trying to sell you something? Verify credentials. Every state has a site where you can verify professional licenses, etc. Remember also that the Internet is NOT a University of Medicine. Wikipedia is not a substitute for a physician.

8. Remember this illness, is what YOU live with. The doctor, does not live with this 24/7, 365. This ship is YOUR OWN, and you are CAPTAIN. The ship will go in the direction that you steer it.

Do not get me wrong. There are mistakes that we all learn from. Every single tip, I provided, I know them because we did the complete opposite of what I have written there. I have been too afraid to question a doctor, and that led to staying with incompetent and incomplete treatment. I have also been thrown out of many doctors offices. Sometimes that is a blessing in disguise.

First and foremost, remember, currently ALL Doctors, and Nurses are HUMAN. They are subject to all that goes with that designation. They are able to make mistakes. Until they develop a completely “free thinking” robot to replace the Human Doctor and Nurse, you are subject to the consequences that come with being treated by those humans.

Good luck and good health to all who are living with the burden of RSD and all that it brings with it. Thank you Jane for having me write this post! Here is to a day, and I pray every day that it’s soon, to an end to RSD!

Written by Tara Mandinec