A Body in Chaos With Dysautonomia 


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Hello Luvs,

Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how I feel so much of the time. If the temperature drops and I get just a little bit cold, then I am freezing cold, my lips turn blue and I am shivering. It truly does take my body quite a long time to regulate when there’s a temperature change. Sometimes when I’m at home, I’ll be just sitting and watching T.V., when suddenly,  I start to sweat and feel so very hot from the inside out! I feel honestly as though I’m going to burn up, blow up or both! It’s a crazy feeling and it makes me feel so terrible. But it’s not crazy because I have my husband come over and feel the back of my neck and he can see that I’m shiny and “clammy” looking.  He has said that he feels the heat coming from my body! Others don’t seem to understand this. No one else seems to understand the  fatigue, heart racing, inability to adjust my body temperature, the GI upset,motility issues, the inability to sleep or the pain either. But all together it is called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berzerk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory -breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

In 2002, I was in a MVA and this is how most everything that is wrong with me began to happen. I started to faint quite frequently. Not only did that happen, but I had problems with all of the bodily functions mentioned above. They also found on an MRI that I have  have “Chiari Malformation I”.  This is a malformation of the brain.  It consists of a downward placement of the cerebellar tonsils through something called the foramen magnum. In plain English it means that the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. It feels as if I cannot hold my own head up because it is too painful. For me it causes the migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.  This is another issue or diagnosis that falls under Dysautonomia “Umbrella”. My Chiari was found and seen on the MRI s/p MVA. I suffered a TBI as well, following that car accident. I was in Brain Injury rehabilitation for 3 years. I saw a brain injury specialist, who is a PMR physician. He did so much and helped me quite a lot.  This Traumatic brain injury makes it impossible for me to recall from my short term memory. I had trouble finding words and still today cannot read a very long book. Articles are best for me.  When writing, as in my blog here, it is very frustrating because I have to read, re-read and read it again. I don’t remember anything unless I am told about 4 times, which is also what showed up in the multiple Neuro-psych testing that I had to do because of it.

I was in a full PT/OT and speech therapy /brain injury program.  Many days I was vomiting from the medicines they were trying to force me to take. I wanted to be a “good patient” and I tried some of them, but all of them made me sick in some way or ways.  One day I kept telling the Physical Therapist that I was not feeling well and I felt as though I might faint. Nobody would listen to me, because although I was in chronic intractable pain; which is horrible and terrible pain since the  MVA, I “looked fine”. So therefore, nobody listened and I was strapped to an exercise bike as they went on talking about their weekends. I felt worse and I called out to them, but no one came. Finally, I fainted!  Onto the floor I went, with my pained legs still attached to the bicycle. I awoke to someone taking my blood pressure. They told me to lay still for an ambulance because my BP was only 70/40 and my Heart rate was only 24.

I was taken by ambulance to a nearby hospital to get stabilized. They were very kind to me. They said that they did not have the facilities to do any kind of heart surgery or things that I may be needing, such as a Pacemaker; so I waited for a transfer to a bigger hospital. After some time went by, the ambulance with the heart monitors came for me. They took me to the big Hospital and I was admitted, observed overnight and then the Cardiologist came to talk with me in the morning. It was the morning of my birthday, my 41st birthday! They came in and told me that I had something called “Sick Sinus Syndrome”. It is a Cardiac Arrhythmia; it is called a “Brady/Tachy Arrhythmia”.  My heart rate could not decide if it wanted to go up to 190 bpm or go down to 24 bpm. It kept going like a roller coaster all night long…Up…down…Up…down. I was told that my heart even stopped several times but restarted on its own. They told me that my Heart was not working or beating properly and that I needed a pacemaker. I also had something called “Prinzmetal Angina”, which they explained was actually “Coronary spasms”. I take nitroglycerin sublingual tablets for the Prinzmetal Angina. I’ve been told that after waiting 5 minutes, and after trying the nitroglycerin tablets 3 times; if it doesn’t help the pain, then I am to go to the Emergency room. From that day on, my fainting spells went away about 80%. I still feel as though I might faint at times, and I have passed out a handful of times, but I don’t actually faint very often any longer. It is a rare occurrence now, very rare.

Within several months, the Brain Injury Rehab center, and my PMR Dr. who specializes in TBI’s or Brain injuries; got me an appointment with the very best Dr. for Dysautonomia in the USA. In fact, this Physician who is the Dept. Head of Cardiology/Vascular, Pediatric Cardiology, EPS (electrophysiology or Heart rhythm disorders) and also the Head of the University of Toledo’s Autonomic Failure Clinic,is Dr. Blair Grubb, M.D.! I was so lucky to be placed in his care. It was one of the very best things that did happen to me s/p that MVA in 2002. My first pacemaker was placed in February 2003. My next Pacemaker was placed in February 2013, exactly 10 years apart. Dr. Grubb hadn’t placed the first one because it was done quickly, here in Michigan. But when he got in there to replace it, he said that the person who’d placed it first; had done so, very deeply, right inside of the Pectoral muscle itself. He told my husband that “it looked like mincemeat” when he went in there. They hadn’t placed it in a mesh bag or anything as they usually do. Dr. Grubb already knew that I had been diagnosed with CRPS in 2007 and that it had spread from my right foot, s/p surgery, to both feet and up to the knees. Lucky for me, he’d researched RSD/CRPS and he found that sometimes if an “internal surgical wash” using  Bivupicaine, is done during surgeries that it should “head off” the spread of the RSD/CRPS from the rest of the body. Unfortunately for me it did not work out the way we’d hoped. My RSD/CRPS spread throughout my body. It went Systemic or Full Body and Disseminated. Dr. Grubb came out and told my husband that when he removed my pacemaker, my heart stopped and that I’m dependent totally on my pacemaker now.  He explained also that my Pectoral muscle had had to be rebuilt. It turned out to be a long, traumatic  surgery instead of a 45 minute Pacemaker replacement.

The turn of events that lead to the car accident, several surgeries and all of the chronic intractable pain; at least led me in the right direction and into the hands of the best Dr. ever, for the illnesses that I have been diagnosed with.  I’m so lucky to have him for all of my heart and pacemaker issues. I’m also very happy that he is the best and most well known Physician in the Country and outside of our Country for Dysautonomia and Autonomic Failure or ANS failure.  As time has gone on, all of my symptoms of Dysautonomia and also POTS (Postural Orthostatic tachycardia syndrome) have gotten worse as time has gone on. I now have been diagnosed with Chronic Kidney Disease stage II, Arnold Chiari Malformation I, Gastroparesis and more.  But these are some of the worse symptoms of the disease of Dysautonomia.  POTS, is where the Heart rate and blood pressure do opposite of what they should be doing, when you stand up after sitting down.  Sometimes you may feel faint as well with this and some people do actually faint from it.

Here let me explain it to you a little better. You see,as I did above, I can tell you how I feel. You won’t be able to grasp it if it has not happened to you. It is not a “hot flash”, like those during Menopause. It is a feeling of literally being so very close to a fire that you can really feel the deep heat from it. Sometimes this feeling will  last’s hours and even after I’ve taken a shower it happens and then I need another. Some of this “heat” and feeling of “being on fire from within” is also the Systemic or Full Body CRPS (Complex Regional Pain Syndrome) along side of the Dysautonomia/POTS etc. Let me explain a little bit better from several of the Dysautonomia websites full of  information. I will post the locations of the websites at the end of my post, so you will have them too. But before the next paragraph, before I get to the more technical stuff; just let me tell you in my own words, what I feel and what I do know. I think it helps me sometimes to relate to someone or something, when they are being “real” and telling their story.  I told you some of my  “story” in the first paragraph or two. But there is so much more information for you to learn and understand about this “invisible illness”.  Dysautonomia is like at “Umbrella” as it has many different symptoms and illnesses that it “covers”.  For example, many persons with this illness, also have CRPS or Complex Regional Pain Syndrome. I am one of those people; and I live with Systemic, Full body CRPS following my 7th surgery s/p the MVA. That foot surgery was in April of 2007 and I was Diagnosed with CRPS at my post-op check up. I couldn’t believe it and didn’t want to and so I got a 2nd opinion from an Orthopedic foot/ankle specialist. The first thing that he said when he saw my foot was “definitely CRPS here is a consultation to a pain clinic”.  I also have Gastroparesis now, which is the almost like a “paralysis” of the digestive system to varying degrees. I feel full very quickly, nauseous, bloated and I feel a burning in my lower abdomen. Another issue that goes along with this is “POTS” or Postural Orthostatic Tachycardia Syndrome. You guessed it, I have this one also. They all go together like a puzzle and they fit like together because they are all under this “umbrella” of Dysautonomia.

POTS causes feelings of being light headed, fainting, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold as I mentioned above as in Dysautonomia. While POTS usually shows up in women who look fine and healthy on the outside, *researchers  say that POTS and the issues that come with it are comparable to the disabling complications of COPD and CHF!!*(from Dysautonomia International)

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “involuntary or automatic” functions of the body that we do not think about or do consciously.  This is things like our: heart rate, blood pressure, digestion,  and temperature control. People living with various forms of Dysautonomia have trouble regulating their body temperature, body systems etc., which can make them feel lightheaded.  Sometimes things occur such as fainting, too high or too low blood pressure, abnormal heart rates (such as bradycardia, tachycardia or both, like I had), malnutrition, and in very severe cases even death can happen.

Please try and remember this or these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr’s told them so! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  Id rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. In honor of this 2016 “Invisible Illness week”, I hope that this post taught someone out there something about how this/these illnesses can affect someone’s life. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of this information was taken from the “*Dysautonomia International” website and more was from “*Healthline”. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day. (The information from these sources has * near it).  Thank you for visiting today. Please come back next time, which will be soon. The next post is going to be something positive and something about CRPS Awareness month, “November”. It’s also called “Nervember” by IPain and “Knowvember” by U.S. Pain Foundation.

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Protected: A Shorter Version Of “My Chronic Pain/ RSD-CRPS Journey”…..


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My Chronic Pain Journey – Suzanne


I was 1st Dx with PTSD 1998. I was in a MVA in 2002, a guy ran a red light! I suffered multiple injuries (*including an MTBI with 3 yrs of MTBI rehabilitation) and surgeries. I had a pacemaker placed twice as the 1st one wore a hole through my pectoral muscle in 10 yrs! Then in 2007, after foot surgery I was Dx with RSD/CRPS OF RIGHT FOOT! I got 2nd opinion & it was confirmed by orthopedic foot Dr. Then after my 2nd pacemaker surgery in 2013, my RSD/CRPS spread to Systemic! I have Long QT, A-Fib, Chiari I Malformation, Dysautonomia/POTS, RA & OA & Immune deficiency disease! So much pain & my Dr helped me control it with pain med’s for 12 yrs! Little did I know I was being over medicated! So were many of his other pain patients! He got in trouble & federal marshals came & he ran to leave his practice & went to urgent care in Jackson, MI! Now I am being taken off of my pain med’s & ins co. Won’t pay & Drs don’t want to be bothered with all the paperwork & rules! I’m afraid that I’ll be stuck to my “lazy boy” chair &/or my bed again! I feel so betrayed by Dr Bullach as he promised to send my history/records to the pain Dr & he promised to call and he did nothing! He left the practice and did nothing!! He never called. He never sent any records as he promised that he would do. I feel so betrayed and so lied to by him….it’s been horrible.

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Protected: Tears Of Truth…..My Story..


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Life with A New Pacemaker & A New “family Member” To Love!!


Amy and Sutton!

 

 

Hello all,

I recently had a surgery in February. I got a brand new pacemaker and it came with a “home monitoring system”. I also got a new Cat in January! Hmm…which one should I tell you about first?

Ok..first off…my youngest daughter got a kitty cat whose name is now “Sutton” and she got her from the Humane Society! She rescued Sutton, a beautiful black, elegant, cute and sweet kitty cat! “Sutty-buddy” is such a sweetheart, she sits on my lap for a whole hour when I go over to visit my daughter. I fell in love with Sutton and now she’s my “grand-kitty”. She’s so cute that she will howl while sitting on the “bar” counter-top at Amy’s apartment. I’m not sure what she’s howling at; but it seems that she likes the clear string of lights across the bar and maybe she wants to just make noise? It really does sound like howling at the moon!! LOL…Now…Sutton doesn’t like to “play” much. If you put a string toy out at her, she may bat at it once or twice but mostly she just sits down like a lump!

Well since my daughter is gone quite often…with working full time and having a great boyfriend, “Grant”. In fact, they just celebrated their one year anniversary of their first date! She has many friends and goes to parties, the casino’s,out to dinner, dancing and so many other fun things! She’s a busy busy young woman. So she felt that Sutton needed a friend and she went to rescue another kitty Cat. That is when she brought home her new white Cat, who she named “Morgan La Fae” (from shakespeare). Morgan is 2 1/2 years old and Sutton is 4 years old. They are both spayed females, but they did NOT like each other at all! After five days staying in Amy’s bathroom, for the most part; switching “on” and “off” with Sutton for Amy’s attention when she was home; and quite a bit of “hissing’ and “growling”; Amy decided that she would have to give up the idea of Sutton having a friend. Sutton is quite happy being the top Cat in Amy’s heart, I’m afraid.

All of these years, both my husband and I have been allergic to Cats and though we‘ve thought about getting a dog…we just haven’t done it yet. I wanted a pet, but after losing my dog, “Kato” after just under a year old, being my BFF and my little “soul-mate”..it was just too hard to try with the chance of that happening again. My heart has been hurt enough and I just couldn’t do it yet..and then still…and then still yet…I never got one. We never got one. But when Amy was going to have to take “Morgan La Fae” back to the rescue shelter to save Sutton from a “bad life”; we decided to give it a try first! We thought it would be a “no-risk” way to try having a Cat. We thought we could try having her in our house and see how Craigs’ allergies did and mine also. We didn’t have to lose any money or our hearts, it would just be a quick few days to see what would happen.

Well, our allergies did happen. We have started taking our allergy meds on a daily basis, but it’s not so bad! We had this beautiful and quite skiddish and sweet all white kitty Cat with emerald green eyes. She has eyes to which one can see through to her soul. She was neglected and possibly abused. She was taken with her kittens from a “hoarder’s house. The people who she lived with before the foster mother, are now in jail and our newly named Cat, “Luna Skye”, has captured our hearts forever!

Luna and I are kindred spirits! We have both had a rough life and people didn’t like to feed us! She is 2 1/2 years old and will NOT eat any kind of treats. She loves to play, likes to be a bit affectionate a bit now and then and she is as cute as a “button”! It’s sad because she slept a few nights with me in our bed, but then when I got home from my surgery, my pacemaker replacement and rebuilding of my pectoral muscle, surgery; she stopped sleeping with me in the bed. We’ve just figured out that it may be the “home monitoring system” that came with this new kind of pacemaker. It tracks every beat of my heart 24/7 and if something is wrong, then a yellow light comes on and we have 3 days to call our Dr. If a red light comes on, then we have to call the Dr. right away. But after researching and coming up with nothing, I decided to write to the Pacemaker Company and to the Pacemaker club online. I asked everyone several questions about the possiblity of this “home station” in our bedroom making some kind of high pitched noise that people cannot hear but the Cat can, possibly hear? I’m still waiting for a response. But in the meantime, we’ve moved the monitor into our spare bedroom, but now I have to go into that room for awhile each day to let it send my heart rythms to the Dr. …although I’m not sure how long I’m supposed to sit there? I guess we’ll start with 30 minutes and find out from the Company?

You see…this monitor sends every heart rythm and every heartbeat good, bad or otherwise through the Cell phone towers and it’s encrypted to the internet. Then a report goes to the Dr. and he looks at the “trending” of my heart and how it is beating on a daily basis. If and/or when something is wrong they’ll let me know. I sure hope that they will let me know how this monitor is working and if it is “Hurting” my kitty Cat’s ears…or scaring and keeping her out of our bedroom.

So..now it’s 4 weeks and I/we have a real live animal in our home! I love her so much and I hope she will become more open to our loving her and maybe one day she’ll even jump up in my lap! I read something on a Cat “board” online, that this guy had a rescued Cat and it wouldn’t be very loving towards him but he still wanted her and loved her. So he just kept on trying and one day after a whole year went by, she jumped up on his lap and it was love at first lap! LOL…..

I know that Luna and I will be forever friends and I hope this pacemaker works well and that I get to live a long life with my soul-mate husband and my beautiful daughter….I also hope that one day I’ll be able to say that I’m living life with both of my beautiful daughters.

You know…I do have some good friends and some of them are like true family to me and to us. Our friends in Scotland, for example..they are such kind and loving, giving people. I talk to them whenever I want because of technology. It feels like they’re right around the corner and then there’s a few other girl friends that I’ve had for many years and they mean alot to me, too. It felt so good to get about 75 cards or so from my fellow “chemo-angels”; all wishing me good luck on my surgery and telling me to “feel well soon”. I got a “Hello Kitty” fruit basket with a H.K. balloon too, from one of my friends who I consider a “sister” in my life; just as my friend in Scotland, is a “sister” to me. She called me every day on “whatsapp” (an app for the Iphone which makes it easy for us to “talk” each day or whenever we wish)…and then there’s my dear friend who is a Pharmacist, and a mom and a wife and a great friend who’s been like a “sister” to me also. She spreads herself so thin, I don’t know how she does it? She even stuck up for me one time when one of my oldest daughters‘ friends was “bullying” me at the mall. No one’s ever stuck up for me before…except for my oldest brother…he used to stick up for me, and protect me when he could.

I guess he can’t now…because he sees things differently than I do…or he chooses NOT to see things the way they truly are and were. But maybe he needs to do that in order to survive in this world. Funny, he seems like the one with “it” all together. He’s a Pharmacist and has his Masters degree and he’s written many articles for Universities. He’s really smart and he works for a Drug company. He travels around the USA and even has gotten to visit Hawaii! He didn’t enjoy it there he told me! There’s another way we see things differently. If I had the great opportunity to visit a beautiful place like Hawaii, I would relish the beauty and see all that I could see. I would do all that I could do and never sit in a hotel room and complain about the humid weather!

He cannot enjoy things because he never has allowed himself to see or feel or experience life in a true way. He lives in a different world of his own making, not his own experiences. But it’s because of his experiences, that he isn’t “free” to be more open to the beauty in the world. Yes, I’ve been through much turmoil, abuse, hurt and the like. But I’ve learned that although I can be hurt by being the “truth bearer”; I also can experience the good things if I allow myself to do so. Rather than worry about cat hair in my house or a little bit of a mess on the floor from a cat bed being out in the living room; I can experience this new life in my home and love this little critter until I can’t love her any more than I do!

I will share a few pictures of Sutton and Luna with you before you go. I hope you enjoy them as much as I’ve enjoyed spending the time with them and taking the pictures! Bye for now…and…..

…….” Small minds cannot comprehend Big spirits. To be great, you have to be willing to bemocked, hated and misunderstood…STAY STRONG!”……………. Anonymous

Luna

 

Luna

 

Sutton just loves all of those balloons..Can you tell? LOL