WARNING: MIGHT BE TOO GRAPHIC FOR THE FAINT AT HEART... I knew I was in for a very interesting test when I entered a hallway in the hospital marked "Nuclear Med"... thought, wow haven't seen this before! Until last week I had never heard of a "Gastro Emptying Nuclear Testing"...if that little embedded word "nuclear" doesn't jump out at you as if watching a 3D horror movie nothing will, right? Upon arrival, tech says to me you need to at least eat the part of the egg sandwich on this tray that he will prepare with a nuclear solution. He proceeds to open a metal military looking box with red warning stickers on the outside of the container (similar to cross bone warning symbols.) Next, removing a syringe filled with the “mystery” contents he injects the liquid into a portion of the sandwich in front of me. Then asking, "do you want to feed yourself, or do you want me to do it for you? Are you kidding me! Of course I want to feed myself... who doesn't? So I'm told if I'm going to feed myself I need to wear protective gloves and covering. Hum, so it's ok to eat the "nuclear liquid'.... swallow it into my body, and oh don't worry you won't absorb it, so no fear... But, if you want to feed yourself, you need to wear protective gloves? Seriously? What is wrong with this picture? It was explained to me there is no fear of danger from the injection because: 1. You are ingesting a very small amount...And who determines what small means? 2. The chemical isn't "absorbed into your body, you excrete it out in bowels"...gross right? Note to self: Go home and consume extra dose of laxatives to get this removal process going ASAP! Of course, this isn’t recommended… but can’t blame a girl for the thought right? As a good patient, I eat the injected portion of my egg sandwich, a bit of canned peaches and drink some of the milk provided. Next on today’s fun filled agenda I’m instructed to lie still for 2 straight hours on the usual x-ray table. Imagine a camera the size of a car tire being pointed directly at your stomach. This huge device will be taking photos of how you’re your tummy is pushing food into small intestine. That brings up another entire horror, 2 hrs without a break! Of course about an hour into the test my kidneys said " Yes, I know you took me to the bathroom an hour ago" but WE need to go NOW! So when the little guy came by next and said " how are you doing?" I replied, I REALLY need to pee! He said, yes that’s the hardest part...Are you kidding me? Tick tock tick tock I am miserable at this point needing to pee. I'm thinking why have I been so stubborn to not wear the new "fancy panties" ...sorry, I have this hatred for the word "adult diapers"... So I'm now thinking at least I wore a pad today, but it isn't positioned for lying down. I pear around and don't see the evil tech around and reach to try and tug the pad backwards a little. Hoping the camera isn't capturing this! I give the pad a tug, and feel the darn thing rip because for once the adhesive is holding on as if it's super glue! At this point I'm beyond needing to pee in agony and thinking ok do whatever you got to do kidneys. Just go for it! And nothing! No matter how hard I try to tell my bladder let it rain, I cant despite the roaring agony I feel! Tick tock tick tock ... Tech says 38 min Now not only my kidneys are raging but my foot spasms decide to start dancing. Have you ever tried to stop your toes from "twirking" with a tire on your stomach and your bladder is locked up in a protest against you? Tick tock tick tock 8 minutes the tech announces ... The longest 8 minutes I have ever been in! Tick tock tick tock! Finally, he cheerfully lifts the tire! I blare at him BATHROOM NOW! So, guess where I drove after leaving hospital...Straight to Rite aid for the purchase of my first package of "fancy panties"! l hope you all get a laugh out of this horror! Ok, to the point of my question: Have any of you encountered "Gastro Paresis"? If so, can you tell me how you deal with it, and how you manage your diet? I understand it has to do with how long it takes your stomach to propel food into the small intestine, and that MS is a known culprit to have abnormal function of the muscles in the stomach to process food properly... Apparently, the normal range is between 60-120 minutes or as my Dr. stated normal is 90 minutes.... (Identifying the time it takes your stomach to move/empty food into the small intestine.) My reading was 836 minutes (approx. 14 hours... hum, guessing that's a little slow.. haha) Here are the details of "what" it is: Gastro paresis is a condition in which your stomach cannot empty itself of food in a normal fashion. It is caused by damage to the vagus nerve, which regulates the digestive system. A damaged vagus nerve prevents the muscles in the stomach and intestine from functioning, preventing food from moving through the digestive system properly. Often, the cause of gastro paresis is unknown. However, the causes of gastro paresis can include: Uncontrolled diabetes Gastric surgery with injury to the vagus nerve Medications such as narcotics and some antidepressants Parkinson's disease Multiple sclerosis Rare conditions such as: Amyloidosis (deposits of protein fibers in tissues and organs) and scleroderma (a connective tissue disorder that affects the skin, blood vessels, skeletal muscles, and internal organs) My Gastro Dr. had ordered the emptying test among other tests to understand what is going on in my system. I had a bout approx. 16 yrs. ago where I was choking on everything I ate and a blockage in the esophagus was cleared with a scope and small balloon. This has flared back again, but this time the esophagus isn't blocked when the upper GI testing was done a few weeks ago. I have many bouts during the year where I am vomiting many times a day for weeks on end, and choking while eating. Recently I went through a session every AM and was to the point of coughing up blood due to the irritation and damage being caused to the esophagus. Having been on Reflux meds all this time now starts to present a problem, as there aren't many choices and your body builds up immunities over time to the first level of those meds. I need to either be able to get it under control better through eating very small and easy to digest foods, or the next phase will be a more advanced sort of medications including Reglan, which are very harsh and difficult side effects. There is no cure for Gastro Paresis and the long term problem if not controlled can lead to temporary or long term feeding tube placement, which I will fight with all I have to not advance if possible. Each suffering person has to find the balance of eating the proper amount and types of food to keep your system allowing food to digest at a more normal rate. There are 3 levels of diet you move between given your current status to try and alleviate the severity of this disease. Gastro Paresis, among other problems can be a door that Multiple Sclerosis opens just when we think we have things under control. We just have to take it one day at a time, and educated ourselves to handle each hurdle. Thank you for laughing with me, through the path. Sharing information, helping others and telling our stories… seems to me to be the best way to be the strong Community we are! Terri Since my last check in I have begun a new drug to treat my MS, Gilenya. After a few happy years on Tysabri my neurologist decided that my risk of PML was to great considering that I am JC positive. While I was ecstatic that I would no longer need to be infused for hours each month I was hesitant to leave the protection I believe Tysabri gave to me. When I was in the middle of an exacerbation a few summers back it became obvious that Copaxone was not performing as expected and Avonex had already failed Tysabri aggressively stepped in and stopped the bleeding. 3 years later and I can’t complain, short of a Mono virus attack Tysabri was bullet proof. Don’t get me wrong when it came down to PML or a new drug the choice was pretty simple. But I do miss Tysabri? How can you miss a treatment or have feelings for that matter? I will not miss getting jabbed or answering the questionnaire but I will miss meeting the people. Over the years I think I sat through about 40 treatments, some longer some shorter, but all were interesting in their own way. When I first started infusions I would check into the hospital and get admitted, my own room with a TV and bathroom, meals delivered and nurses that thought I was a local celebrity due to a paperwork error. I met many people just starting their MS health care journey and I met people that had been on their journey for decades. We shared stories and knowledge, I taught and I learned. You have a lot to live up to Gilenya. Be a warrior today, Donn Beautifully, “Let it Go, let it go” has become a new mantra for little children everywhere (and Disney loving adults.) But while it may be easy to sing, it is a struggle in practice. Or so I thought. A month ago I began my journey with letting go. I give it that timeframe because that is the first moment where I became clearly cognizant of just how tightly I hang on. To everything. It was a month ago that I started talk therapy, for maybe the sixth time in my life, but with a new openness this time. During one session I mentioned casually how I remember large amounts of insignificant information and I am continuously gathering more throughout the day. She challenged me to consciously not do this. To look at the very thing I used to tell myself “remember that for later” and say instead “I am choosing not to remember you.” The first time I did this, I cried. And then it came to me in a flood, I was grieving. This unfamiliar feeling of releasing felt the same as loss. And loss felt very familiar and awful. My older sister died abruptly and tragically when I was 12. That year I picked up some OCD behaviors, sleep disturbances and a chronic daily migraine that is still with me twenty years later. Pain lead to stress and more pain and more stress and then I lost my vision and was diagnosed with multiple sclerosis 3 months later. My whole life has been powering through in a Type-A kind-of way, damning the world for all it’s many misfortunes and mishaps. I was angry and hurt with a huge wall built up. And that continued until I found yoga and meditation three years ago. Well, honestly I was pretty angry for a ways into that journey too. Somewhere during my Kundalini Yoga Teacher Training I realized that I had been operating out of my negative mind for years. And I prepared myself for the long road out of it. I shared this with my Teacher Trainer and his response was “Or not. It could happen quickly and easily too.” And here I am, having revelations about my nature with letting go every day. I am holding onto pain, habits that no longer serve me, compulsive mind patterns, resentment, bitterness, anything and everything that I can grab onto and not have to let go. My need to obsessively plan? That’s about not wanting to let go. My drive to control all situations in life, including the behaviors and even plans of others? Also about not wanting to let go. All roads seem to lead back to this. And I know that means all roads lead back to the deep grief that I feel and never allowed myself to fully express. I am sad that I did not get to be adult friends with my sister. I am sad that my physical health is such that I cannot enjoy the same things that I once loved. I am sad that bad things happen and I cannot do anything to control their outcome. But I am so happy that I can say all of that. I can honor my deeply felt emotions, nurture them, ask them what they are seeking to tell me and soothe them by acknowledging “I am here for you grief, I am here for you sadness.” Last week I attended a yoga class. When we got to deep relaxation at the end, the instructor guided us to “Let go.” She said this several times. The first time I felt my body grip and I recognized “fear, fear, this is fear.” The second time I felt the tears coming but I scrunched up my face and held my breath because I also felt another feeling coming- it was grief! The third time I let the tears go, and when I let the tears go, my body relaxed. I think she may have said it a fourth time, but I don’t know, I had already given in to a state of surrender I have never felt before. I am ready to let go of this pain, of this illness, and of the hold they both have on me. But I know that is the end of my journey. My journey begins with letting go of the illusion that I can control anything. It begins with stepping into the grace of serving my highest self just because. Nurturing because it feels good. Letting go of feelings that brew and fuel bad moods and a sick body. Approaching myself and all living beings with gentleness and understanding. Radical self acceptance, radical love, a new radical way of embracing life to live fully. “If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.” -Ajahn Chah Emily teachers Kundalini and Yin Yoga at Kundalini Yoga Boston where she goes by her spiritual name Preet Kaur. She will be leading an upcoming workshop at KYB entitled “Let Go & Live Fully.” The workshop is geared towards those with chronic illness and pain and their caregivers. More information and registration can be found here: http://www.kundaliniyogaboston.com/let-go-live-fully-2/ For me I guess it is the stigma associated with the word "pseudo" that just sends a rage through my soul. I have been having some issues lately (last 30 days) of a severe UTI testing as e-coli, coupled with coughing blood and vomiting issues. The esophagus issues causing the blood/vomiting are a result of either blockage or narrowing in the esophagus (which I have had in the past requiring a balloon treatment to control the narrowing) or a moderate size hiatal hernia found years ago is rearing its ugly head... none the less my PCP and appt. next week with a Gastro specialist will be getting to the bottom of this issue. Back to my story today... given all my body has been fighting and going through recently I have REALLY noticed my MS symptoms especially in terms of pain/spasticity etc. from knees to toes is going bonkers.... Since my level of mobility has worsened over the past few days, I figured it was time to make a phone call to my neurologist and give them a heads up. I already have an appt with them in 2 weeks, but just wanted to make them aware that I think since my body has been weak due to all the other issues, it seems to be worsening my MS. The return phone call from the PA confirmed my suspicion but when I heard the word "pseudo" I got bent out of shape. I was told years ago that I was having "pseudo seizures" and even treated with seizure meds... I was horrified to hear that term... thinking how is it "pseudo" when in fact I passed out with no memory of moments before or after this so called "pseudo" event. I also lost my temper when last year fighting for my ability to walk again after a long battle with bi-lateral pulmonary embolisms, DVT's, sepsis, and MRSA had me fighting with all I had in physical therapy to be able to walk again... a physical therapist who was trying to teach me to get up off the ground if I fell... used that term "pseudo" and stated "there is nothing really wrong with you, it's all in your head"... clearly showing this FOOL had no idea what MS was or what goes on... I was beyond horrified, and the other physical therapist personnel reported this fool, and quickly jumped to my aid... So my question today is.... do you feel rage when hearing the term "pseudo"? Do you feel as if it is not giving validity to the pain or problem you are experiencing? Do you feel that the term is calling you a liar of sorts in the pain, agony, and difficulty you are experiencing? I want to learn how to not feel defeated by those 6 letters (pseudo)... and to learn how to know it is real, it is valid, and it is not making me out to be a "crazy person"... I know it is just a word, and what I feel is a true neurological symptom that today I'm experiencing and have experienced... I know a MRI at the moment would probably not show an enhancing lesion, but the reality is my body is weak, and the infection(s) from other issues are the culprit that are causing me to be having a surge in problems in my mobility level... and that in time as the other issues raging in my body are resolved this will slow as well.... I know all that... so why does that 1 word have me feeling this way? Would love to hear what others have experienced and words of wisdom from the best community.... THE MS COMMUNITY... love to all! -Terri After months and months of planning and preparation MuckFest 2015 is in the books. Team Healthcarejourney.com did an amazing job both fundraising (the money goes to the National MS Society) and running through the crazy muck filled obstacle course. We had top 10 finishers in team fundraising, individual fundraising and running the obstacle course. This year’s fundraising total was $6,200 up from $4,000 from the last event in 2013. Between our two main fundraising events we raised nearly $4,000. Our raffle put on by the Beer Connoisseurs of Southeast Michigan was a hit bringing in over $3,000. My appreciation and gratitude goes out to the Connies, a great group of people with big hearts and a passion for craft brews. Our second and culminating event was a concert at a local venue featuring Plymouth rockers the Velvet Fairground, the concert was well attended and brought in $500. Two members of our group of Muckers brought in enough donations to crack the top 10 list for individual fundraising! Eric Rayner brought in $2,000, a big thank you to Eric and his fellow Quicken Detroit teammates! Along with Eric I was lucky enough to bring in nearly $1,500, thank you everyone that donated and participated in our events. On the obstacle course teammate Jason Vallimont came in 4th place overall during the competitive wave! I am so proud of our team; we raised enough money to win every single incentive offered by the NMSS for fundraising. Tons of t-shirts, a team tent even free beers! Not to be lost in all of the fun that was had and mud that was slung is the most important fact of all, we helped fund vital MS research and helped provide services to many MSers in need. To date MuckFest has helped raise over $20,000,000. Fundraising for MS is something near and dear to my heart, 5 years ago I was destroyed by the diagnosis. When people would ask why I was limping, I always said “car accident”, which was slightly true, but not the whole truth. To think that over the years I have been able to embrace my diagnosis and even fight back. No longer do I hide the fact that I have MS I will tell anyone. MS doesn’t scare me anymore, why should it? My friends, family and community are here to catch me when I fall and lift me up even higher when I get back up! Be a warrior today, Donn Summer is upon us and my daughter has arrived which has been incredible. Little baby girl is here and her mom is also home for the next month which is great. We are getting to spend a lot of family time together and we are very lucky. Being able to spend guy time with my nearly 3 year old son, Will, who is growing up so quickly has been great. We have done all kinds of fun stuff lately; we have ridden on a steam engine, went to a work site and watched heavy equipment in action not to mention the airport to watch the big planes come in! Being a teacher I try to cram all of my appointments into this wonderful time known as summer, so far I have been to my neurologist and my general doctor for a normal well-being check up! Not to mention my wife, our newborn and toddler son whom have all had appointments as well. Being nearly 3 and a pretty observant guy my son has figured out that going to the doc is an important part of staying healthy and living a normal life. He, his mom and sister are all doing great and the doctor always gives them stickers or a balloon to prove so. My doctors give me infusions, MRI’s and are constantly bleeding me dry in turn sending me home covered with bandages and band aids instead of toting a balloon. Now that he is old enough to be aware of what’s going on around him he has started to take note of my well-being, in particular my gimpy leg and spastic twitches. He has finally reached the “why?” phase of being a kid, which is both exhausting and rewarding. We try to explain as much as possible to him or show him an example that helps him better to understand “why?” He is having a rough time understanding “why?” dad stumbles around and twitches all of the time? Recently he witnessed me stumble and wipe out and the look of terror on his face as I went down is something I will never forget. “Why did you fall, don’t do that!” Nothing beats being scolded by a crying kid as you try to lift yourself up off of the ground and make it look like nothing happened! Will is a very quizzical little guy and when he sees me struggling he has been ordering me to the doctor to “get better” like I will take some magical MS cough syrup and be cured, I wish. We have had some time to check out my leg together and feel my cold toes and see that they don’t move at all, not like his wiggly little pigs. He points to my good leg and says “that one is good?” and I shake it around to show that it is indeed good. He points to the gimpy leg and says “this one is not working?” So I let it lay there and show him that it’s still just a big useless leg to which he responds “why?” to which I have been telling him that “dad is sick”. This often times turns into quite the “why?” black hole but I think he is starting to understand that even though I’m sick, I’m ok? It doesn’t even make sense to me but he seems to be getting it. Be a warrior today, Donn
Most MS patients likely wait a long time before they receive a Multiple Sclerosis diagnosis. Since there is not a definitive test that positively discloses MS, it seems that neurologists are hesitant to give the chronic diagnosis quickly. This is even more obvious when a child presents with MS symptoms. When our daughter was 10 years old, in 1999, it was not believed that children could develop MS. We lived with an alternative diagnosis of ADEM. Acute disseminated encephalomyelitis (ADEM) is typically a one time episode with symptoms that mimic MS. We lived with this diagnosis for almost 2 years while she experienced several attacks. At this point, we were told that even though it was still believed that she did not have MS, she would be treated for the disease since the neurologists did not know what else to do. After 8 years living with the ADEM diagnosis that was just being stubborn, we were given the official diagnosis. Because of living with the hope for such a long time that she would outgrow these attacks and be able to live a full life, denial was always our fallback. As much as our adult MS specialist that worked along our pediatric neurologist was convinced she had MS, I think deep down we were hoping he was wrong and someday we would get our daughter back. Now that we are 15 years into this journey, we know that she will never return to her former self. The best we can hope for now is that she slows her decline. I imagine that adults faced with the same diagnosis also have a very hard time admitting that this is a chronic illness and it will impact their lives to some degree. The hardest part about seeing your child or any loved one go through this disease is that there is nothing you can do to fix it. The best we can do is to be there for moral support. The best thing we can do for ourselves as caregivers is to reach out to others who are also experiencing the same life altering situation. We are lucky to have the internet and social media available to be able to find so many struggling with the same feelings. I don’t know if I would have been able to get through the rough patches if not for social media and the ability it gives us to connect. Even if you know of others with MS, every patient is unique in their symptoms. The better the ability to connect with others on the social media pages helps us immensely. If you are a caregiver of a child with MS, please join me on the Facebook group Pediatric Multiple Sclerosis Alliance. #mscaregiver #caregiver #multiplesclerosis I haven't sat down to write a blog in a while. Have been dealing with a flare and steroid hell. Hoping the worst is behind me. Trying to think of the positive way to get this information out. Unfortunately, I have been unable to build the kind of rapport with my new physician who replaced the old. I'm not a very big complainer so when I voiced my concerns to my previous physician, he immediately acted without me going through hoops. So let's just say, it's time for a change. For me as a healthcare professional (I am a nurse), this is very difficult. I am usually very understanding about rules, time frames etc. that health professionals deal with on an every day basis. What I don't tolerate is not listening or reviewing patients histories and acting appropriately. As much as it us a pain to obtain copies of records, MRI disks, make the change even if it's hard. You must be able to feel confident in your caretaker. If you switch and don't bond again, change until you find the right fit. On a positive note, the nurses who did my transfusions gave me some great advice. As my significant other (ex husband) is getting towards retirement age and could possibly be offered a buy out package, they suggested I use my 100 percent durable medical coverage now and order an electric scooter as I will probably be needing it sooner than later. Never would of thought to do that. I do use scooter for traveling but have always rented one. I'm heading to Bermuda in two weeks and found out that it is cheaper to just buy one outright than it would be to rent it for a week. I'm driving to the ship so I'll just throw it in trunk and will be all set. So thinking ahead, it may be many years before you need permanent wheels but if you have benefits and you pay for them use them while you can. I will be working with the website administrator soon to possibly have a link developed to donate supplies for other patients, or to do swaps or sell equipment patients are not using. I know I have a wheelchair, shower stool and cooling clothing I can donate to start us out. Any feed back on this will help us decide on it's worth. Enjoy your summer fellow patients stay cool. -Susan A BIT ABOUT SUSAN...Susan is a registered nurse who worked in high risk obstetrics at Brigham and Women's for twenty years. She is also a certified nurse paralegal. She is currently not practicing as she is disabled because of MS. She was diagnosed 9 years ago with RRMS and has a daughter who also has MS. Summer is finally here and it brought me a little girl! My second child was born at the end of May, I am very excited to be a father again but I forgot about all the work that goes into keeping a newborn happy and quiet! While trying to keep my little princess happy I can’t forget about my most fragile dependent…Multiple Sclerosis. Having a newborn in the house has been great but my MS tries to butt in whenever possible. The simplest things are complicated by being twitchy or by being unable to use my fine motor. Picking up a sleeping baby is something that needs to be done with precision and finesse to avoid waking the slumbering mini. Unfortunately this Dad has the finesse of Charles Barkley on a golf course. My left hand is pretty weak and fine motor is non-existent so getting those tiny little snaps to fasten together is incredibly frustrating, lucky for me my wife is much more patient than I am. Lucky for her diapers are still totally doable for me. ”It is hard to remain sleeping when the guy holding you twitches and is constantly bouncing”, said my three week old daughter. Over the past few months my arms and legs seem to have a mind of their own. It started with my right shoulder jerking around a few months ago; I figured it was a side effect of the stress of work and preparations for the baby. I’ve had twitches in the past during stressful events, but they went away over time. It seems like these twitches have moved in permanently. The shoulder twitch has evolved into a full right arm flail when I get tired or stressed out, same as my legs. This has been worrisome as almost all of my MS symptoms have stayed on the left side of my body, I will be seeing my neuro next week to discuss all of this. Finally my old friend balance or lack of balance has sprung up again. While trying to walk around carrying an eight pound bundle of joy it is important to not trip and fall, so far so good. When I do carry the baby I am overly cautious and try not to go very far with her. When my son was an infant I did fall but I was able to lay him on the couch as I went down, kind of a baby finger roll. That was one of the scariest things to ever happen to me, but it could’ve been much worse. Over the next few weeks of Summer I hope to get a hold of these symptoms and try to relax a little now that the baby is finally here. With any luck the baby will rest and grow and MS will rest and stay quiet. Be a warrior today, Donn |
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