Today is Rare Disease Day. “Any disease, disorder, illness, or condition affecting fewer than 200,000 people in the United States is considered rare.” (rarediseaseday.us) There are more than 7000 rare diseases and disorders in the US. That comes to over 30 million people who have a rare disease. It’s not so rare huh?
Some of you may know that Ménière’s Disease is a Rare Disease, it is listed on the National Organization for Rare Diseases (NORD) registry. The information they have listed about Ménière’s Disease is interesting. Please go check it out. Even I learned a thing or two. 🙂
Benign paroxysmal position vertigo (BPPV) is also on the Rare Disease registry. You can read more about it here. I’m very impressed by the information available on NORD, if you have a rare disease, or want to know more about one, I urge you to look it up on the National Organization for Rare Diseases (NORD) site.
Having a rare disease normally means that there is little known about the disease, we go from doctor to doctor hoping to find out more. Hoping to find help. More research is needed for all rare diseases. Contact your local representative to speak out for your disease and make sure more research is provided. You can find out how to contact your representative here.
“NORD’s Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S.” *from NORD website
Do you have a rare disease? Curious, have you ever contacted your representative about it?
Your vestibular system is the ear part of how you balance. You balance with your ears, eyes, and your body/feet. My vestibular system doesn’t work so good, so vestibular therapy is going to teach me how to balance more with my eyes and feet.
When going into vestibular rehabilitation physical therapy last Thursday I had no idea what to expect, and to tell the truth I don’t have any idea what to expect at my next appointment, but I know it won’t be easy.
Ryan is my therapist (I may see another therapist at some point, there are 2 vestibular therapist there, but I would prefer to keep seeing Ryan, because I can hear him pretty well, and he is understanding about how to talk to me so it is easier for me to understand him), I’m impressed with him so far…very impressed. I’ve never had anyone be so aware of my condition and so understanding. No one.
He did a number of tests on me, said some things we need to work on…like the fact that my ankles don’t bend far enough. Ankle flexibility and strength seem to be very important. Of course that makes perfect sense when a huge part of your balance comes from your feet.
I told him my experience of having BPPV for 11 days this past summer but by the time I got in to see the doctor it stopped the day before, the doctor didn’t want mess with it then for fear of starting it again, so they didn’t actually do the test. I explained that since then I’ve had trouble turning over in bed, and at other times, but I’ve been tested twice since then and it was negative. He tested me…it was positive…it was slight, but it was there, he also listened to me about when the symptoms started, he didn’t just look at my eyes and when it didn’t start jumping around immediately say, you don’t have BPPV. He really listened and payed attention. He then did the Epley Maneuver on me and I feel so much better. (I want to note here that the Epley Maneuver does not treat every type of BPPV.) I will probably need to be treated again, but not being jarred awake by spins when I turn over is wonderful. I get a tiny bit now and then, but it doesn’t wake me up. Happy Dance!
There was a point in the test where he had me stand and close my eyes..I was VERY nervous….meaning inside I was freaking out, he asked me to take a step and I…well I just couldn’t! He encouraged me and told he he had me and I wouldn’t fall (in my mind I thought, “yeah, this little guy is going to catch this big old woman…in his dreams!”. Out loud I broke into tears and said, “I don’t do the dark.” I should have explained, I’m not really that afraid of falling, yeah I might get hurt, but that isn’t nearly as scary to me as the vertigo, and the dark can trigger vertigo…I don’t do dark.
My anxiety is so high. That is so not a good thing. Anxiety can cause vertigo. Vertigo causes anxiety. There’s a bit of a Catch 22 there isn’t it? I have noticed I do not like it when someone says that I’m anxious. (Yep, he said that) I get defensive. I want to scream, “If you had this would you not react like I am?” I feel like being anxious is a negative thing, therefore they are telling me that I’m not dealing with this as well as I could. I know I’m much more anxious than I used to be, panic mode, almost constant fear…it’s hard, really hard. (No, I have not been keeping up my mindfulness practice, and yes I started meditating again this week.)
It was a fairly long intake appointment, all the testing, background questions….he was surprised I hadn’t had this kind of therapy before. That’s because, most of the people he sees have not been living with a vestibular disorder for this many years before getting vestibular therapy for the first time. *scrunchy face*
He warned me that this isn’t going to be easy, that I will probably be nauseous a lot, but if I can hang in there it can really help.
My homework…when I got there he noticed that I don’t move my head much when I walk, so my homework has been to look around. Open my visual range, turning my head. Of course, always using my walker.
I had a pretty big vertigo attack that started on the way home, and I felt horrible the whole next day. I even fell down, I’ve only fallen once since my hip replacement until now. (Really I kind of slid down the wall, I felt myself getting really bad, so instead of trying to race to a chair or something, I leaned on the wall and just slid down. I’ve found that to be pretty safe.)
I’m trying to do my homework and look around, but it’s hard, moving my head really makes me sick.
I go back on Thursday, yep tomorrow, we’ll see how it goes.
He wanted to see me twice a week, but we asked if I could go once a week with homework. Hubby has to take me everywhere and I’m trying to reduce the amount of appointments. His work hours can be flexible, but it’s much better if he works somewhat normal hours, and I don’t want to exhaust my poor husband, being a caregiver is hard. Ryan said that he would give me plenty of homework!
I wanted to share with everyone that I’m featured in an article in Everyday Health. It is titled How Vertigo Changed My Life. I am one of two women featured in the article. I’m thrilled that Dr. Sanjay Gupta, felt that the impact that vertigo can have on a person’s life needs to be brought to the attention of the public. The general population does not know much about vestibular disorders, you just don’t hear about us very much. There aren’t commercials for medications that will help us, or anything like that. Vestibular disorders are kind of confusing, even to a lot of doctors. I’m honored, and thankful that they asked me to be a part of this article.
I hope you enjoy the article. It’s a short read. Please let me know what you think.
I’ve had so much going on, not just getting ready for the surgery but other things happening too. As they say, “When it rains”….learn to dance. (ok, I’m paraphrasing)
As I mentioned in my last post, a few weeks ago I started having positional vertigo. If I moved my head in certain positions I had violent vertigo….left for a very limited life. I’ve had something like this before but it was associated with my migraines. No migraines with it this time. After a few days I tried to get in to the doctor here, but no appointments for a few days (13 days after it started), so after 12 days, it finally stopped, the day before my appointment. I did see the doctor and I was diagnosed have Benign Paroxysmal Positional Vertigo (BPPV). He said this will most likely pop up now and then forever. It is caused by crystals in your ear coming loose and going where they aren’t supposed to, the vertigo stops when they go back. (I’m just touching on the highlights of what he told me here.) There is a maneuver, called the Epley maneuver, that the doctor can do to get the crystals to go back, sometimes the crystals go back on their own…like mine did. BPPV can cause one to have feelings of vertigo, dizziness, nausea, lightheaded, and unsteadiness. It will most often dislodge again, over and over. I’m not supposed to look up, or bend over very much, and be careful when I’m lying in bed how fast I turn over…..
Some sites do say that this can happen only once. I know someone who had this happen once and never had it happen again. Maybe I’ll be one of those. (one can hope.) I have having very strong feelings of lightheadedness, and unsteadiness. When I turn my head too fast I am wayyyy off balance! Johns Hopkins has a very good write up about BPPV, what it is, how it is treated, and the prognosis. I won’t try to summarize it here when you can just read it there, it’s a pretty short article.
Yes….I have a 3rd thing that causes vertigo. I’m such a dizzy broad!
Last week I had a real scare, it happened so fast I was just in shock the whole time. I suddenly had pain, swelling, and a big knot (sorry it was just too big for me to call it a lump) in my breast. I wasn’t concerned at first because I know most often breast cancer doesn’t cause pain unless it is very advanced and symptoms don’t come up so fast….I mean within hours. But there is a breast cancer that can do this, it’s called Inflammatory Breast Cancer. That stuff is scary!! My doctor got me in for an emergency mammogram and ultrasound, and an evaluation from a Breast Specialist, within days. They took a lot of pictures an it hurt like the dickens because my breast was is sore, even the ultrasound was very painful. But I’m happy to say, I’m fine. Even though I’m post menopausal, for some reason my hormones decided to make my milk ducts go crazy. Now everything is going down…slowly, and the pain is going away. Thank goodness. But it was very scary there for a while. I didn’t have all the symptoms, but I could have been in the very early stages, and they normally catch it at Stage III or IV. It is hard to diagnose and is very aggressive, the normal life span is 5 years! Yes, I’m preaching a little bit about Inflammatory Breast Cancer, I feel more people should know about it. Here are a few links that talk about it, take the time and look over one of them. Inflammatory Breast Cancer Foundation, National Breast Cancer Institute, and the American Cancer Society are all good site to learn more about Inflammatory Breast Cancer, they are all written in a different manner, so check them out and read the one that speaks to you.
I was beside myself for those few days, only my meditation got me through, but I still had a vertigo attack the day before my mammogram. Even now my head is spinning (not literally this time) that I had no idea about this kind of breast cancer, and how fast things like this can happen. I really thought that all of my chronic illnesses had made me realize how precious life is, and that I should never take anything for granted, but when I thought about possibly having this, I thought….. I’m going to stop putting off things! I decided right then, I’m going to always live as if I only have 5 years to live. Stop putting everything off because I don’t think I deserve it because I don’t contribute, because I’m sick all the time. If there is something I really want to I’m going to try and do it if it’s at all, yep, I’m going for it! I don’t want to regret that I didn’t do______________.
I really never thought I would feel that way. I realized recently how many things I don’t do because I’m afraid of how I will feel the next day. Because I don’t have enough “spoons”. You know what? I’m going to borrow those spoons from tomorrow, and of tomorrow comes and I can’t get out of bed, so be it. There are a lot of times I can’t get out of bed even though I did do what I wanted.
I thought I lived my life to the fullest and didn’t worry if my life came to an end tomorrow, but when this scare came up, I thought…”I won’t be able to do ____________, or _____________….why didn’t I do __________….Stuart and I never got to ___________.” That has to change. Sure finances stop a lot, but we can’t save for a tomorrow that may never come. Some things we need to do now, instead of saving for the bigger things later. We need more joy in our lives today. We need to dance in the rain more often.
On a different note…..
We went to the class about for people having knee or hip replacements at the hospital this week, right before my Pre-Op appointment (yes, I’m healthy enough go through surgery). Everyone in my class was having a hip replacement. The person teaching the class started by saying that most everyone there was probably there because they had arthritis in their hip I shook my head, no. She looked at me, sitting in a wheelchair and said, “Do you have Avascular Necrosis?” I shook my head, yes. She said, “I’m so sorry, that is so painful.” Every eye in the room turned to me. I have to say, I was wondering why everyone there was able to walk in with no cane or anything. Only one person had a slight limp. I had to remember that I can’t judge their situation, I have no idea what is going on with them. I was just surprised. When they told me about this class I thought, “Really, they expect people who are having a hip replacement to sit through an hour long class?” It seemed to be no problem for most people.
I kept wondering why they didn’t give out the hip motility items, before surgery, I know I need all of the help I can get now, and assumed everyone did. I know now, not everyone needs so much help before surgery. (The hip motillity items I’m refering to are the devices we get after surgery. A walker, cane, 3-in-1 toilet, shower seat…..ect)
I do have a walker, 2 actually, one that is very sturdy and will help me when I’m starting to walk again after surgery (and helps me a lot now); another that helps me more with my balance issues, it has a nice seat and everything. We put in a bar in the bathroom. It has helped me a lot so far, and will continue to help me even after the surgery with my balance issues. I’m really looking forward to getting everything else. Our insurance covers motility devices, Stuart is going to call on Monday to see if they will cover some of these things if we buy them instead of getting them from the hospital. The person teaching the class sounded as if they will, and it will cost less. Also, some things they will give me at the hospital isn’t going to work as well as some things I could get on my own. Crossing fingers here….or we may just be getting some things on our own, without insurance help.
My surgery will last at most an hour….probably less. Then I go to recovery….they have a fancy name for it, I don’t remember it. I will have a nurse assigned just to me. I thought that was pretty amazing. After a few hours there, I will go up to my room. I should walk a bit that day. It really depends on how the anesthesia affects me. I won’t be having traditional anesthesia, I will be having a spinal block, much like an epidural a woman has when she has a baby. I will also have an anesthesia much like what you get when you have a colonoscopy, so I won’t under general anesthesia. Therefore, there are a lot less risks.
They will spend a lot of time with me in the hospital to make sure I know how to take care of myself when I get home. Stuart will also be there to make sure he knows things too. He has to be with me at home all the time the first few days. I will have a Physical and/or Occupational Therapist come to my home 2-3 days a week. So I can’t be slack with my therapy! haha No worries with that, I really want to get to moving as quickly as I can!
Surgery is 9 days away. In the past couple of weeks I’ve had vertigo so much!!! I hope I’m getting it out of my system. I still haven’t figured out how I’m going to have an attack and not forget all about the rules when it is going on. But I will make sure I know how to do these things before I leave the hospital. I have special needs and I will make sure they are addressed. That’s what it means to be are an advocate for yourself.
Don’t want to count my chickens before they hatch and all of that, but…..
Soon I should be able to dance in the rain with much less pain!
Picnic with Ants 