Tag Archives: Autonomic nueropathy

When there is no cure !!!!

I recently went to Stanford and I was all positive except the IVIG treatment makes me so sick, but I thought Typical check up, plan the rest of my treatment plan than happy du da day! Well I got to the Autonomic clinic and I see my Dr and I said only 6 more months and I cured right? He looks at me says “No” This IVIG is not treatment for your disease its for the rare antibody we found. There is no cure. I was speechless. I thought that’s what the treatment was for, “No” It was only for the antibody. So I sad there he did a exam and I have definitely gotten worse. Every thing I asked I got the same response, Its part of the disease. So I don’t know what made me come out and ask but I asked “am I going to die?” He said not from this disease, but Kelly you are so rare your disease is so new but Washington Research Institute is doing a lot of studies and a cure can be around the corner, But this disease won’t kill you, we just need to treat the symptoms and keep you comfortable, I didn’t like that response. So I said is there anything I can try? Yes, but there are no study’s that it does or does not work, And you can loose your kidney and liver in the process. I asked would you do it, He looked at me and said “No” I said that means this entire time I am been sicker than a dog for a week every month was for a antibody, yes he said and there is no study that this IVIG is going to do anything for it. So this entire time, I am going through hell only to think It was to make me better and No one has been on my dose, for the length of time that I have been on it. He said I am it??? Yes, I said well do we stop the IVIG, He said no the study from Washington Research Center wants you to finish up to your year mark, do more biopsies see if the antibody is gone, but either way its not a cure so why? Research for other patients, He said you can opt out, I thought to myself I never would have opted in if I knew I was the first. So we will cut it own from 5 days to 3 because days 4 and 5 kill me. So that’s the first appointment. Now I get to see the GI Doctor who basically tells me any of the medications I could get could hurt me more than help me, but would you like to see a nutritionist, For what purpose I ask, I can’t eat, well she can tell you what foods to avoid, I said well It’s easier to say what I can eat, nothing but protein shakes. Well puree your food, I said you don’t understand it hurts to eat whether its a pureed taco, it’ still going to hurt. So she asked if I wanted to have Botox injected down my esophagus, I said isn’t that a little close to my lungs my heart, my swallowing function, yes you would be very risky, ok next option, injections all around my rig cage for the pain from vomiting, ok but that’s temporary, Yes, There is a surgery of putting a pace maker in your stomach but most people don’t like it and you can for sure see it an feel it, okay, what about my Hiatal Hernia, no we don’t want to fix it unless absolutely necessary but we could cut the opening to your stomach to make it easier for food to go down, I was thinking well if you want to cut my stomach opening why wouldn’t you fix the hernia oh because it is not necessary. Oh and Kelly we are moving out of this building and going to redwood city an Emeryville by UC Berkley, So I asked what am I actually following up with you for, doesn’t seem like you want to do anything for me, well you if loose any more weight, As your doctor you would have to have a feeding tube or g button for TPN feedings, I said wait a minute no one seems to care that I have lost so much weight and your response is it’s your Dr’s responsibility to make sure your getting nutrition. So I have to watch you closer so triple up on the protein shakes because I do not want to see you go any lower because that will cause other problems. So What do you say to all that oh and by the way I’m 12 weeks pregnant so I need to get you in after we move and before I take my leave of absence. Yet not one blood test. nothing to check my kidneys from IVIG treatment, just see you soon. I left speechless! Imagine that Speechless. So I had a heavy heart the entire way home. But I will not let this disease define me or take me, I will fight it with all my stubbornness that God gave me and still continue my purpose. I have no control over any of this, I can try to lower stress, I can eat my protein shakes, by the way Costco’s protein shakes taste Nasty. So I sit in the world of I have no plan just keep me on IVIG until December, then its keeping me comfortable. Watch my stress and don’t push to much, listen to my body. Rest when my body says rest. Stay close to those I love and help people with invisible illness get through there journey. That’s all I can do. The left is up to the man upstairs.

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Its awareness time for Invisible Illnesses!

A Invisible illness is a illness that you have that can’t be seen, MS, SJorden’s, Cluster headaches, migraine headaches, gastroparesis, Huntington’s disease ,fibromyalgia,chronic fatigue, lupus,reflex sympathetic Dystrophy, Myalgic Encephalomuelitis, Crohn’s disease, cystic fibrosis, RA, Prinz Metals Variant Arigina, Asthma, Hypogamma-globulinemia, PTSD, concussion, post concussion syndrome, Hep C, Chronic Back injury, Diabetes, cancer, autonomic neuropathy, autonomic small tissue neuropathy, autonomic dysfunction, Autoimmune disease of the inner ear, AIED, Menieres, So many there isn’t enough pages to list all the invisible illnesses.

The key to Invisible Illness is yet the hardest thing to do is diagnose a invisible illness, but the sooner you get diagnosis, get the right treatment, most invisible illnesses don’t have a cure. just comfort measures.

I have a invisible illness, several to be exact and I can tell you the hardest thing is having to defend your illness to everyone, they don’t believe you, they think you are doing it for attention. Believe me I would do anything to have my old life back, be able to work, go for a walk, hike, go have vacations, go to the mail box, walk in a line, Sleep! Sleep is so important and as a patient with invisible illnesses, I feel like I can sleep all the time, my brain is working on over time every day, just to get out of bed, just to do my hair..

I call it payback, if I go do something fun, the energy it takes to get ready and get somewhere be normal for a few minutes and then go home and crash, the pay back! the more stress the more pay back. It can take hours to get ready just for a simple dinner but I can sleep 14 hours after. Any Dr appointments wipe me out, specially if testing is to be done. So I plan. everything has to be planned, If I can make dinner I have to make it early so I am not sleeping when it’s dinner time, If I clean up the laundry room, I have to sleep after, I will do 1 load of laundry and pay.

When you have to defend your illness, its hurts inside, when your family doesn’t believe you it breaks your heart, your always on the defense. Your friends disappear, family disappears whether its because they can’t handle it or because they don’t want to. That’s the killer. You become the scape goat for family issues because your crazy. Its a awful place to be, your not only alone but your alone with your disease, not knowing what tomorrow may bring or if tomorrow will come or if you even want it to. Having a invisible illness F g sucks! more bad days than good, never being able to make plans.

So If you take anything from this post today is we are telling the truth, we are sick, we need your support not your drama. We don’t need to explain our illness or defend it and if you can’t be supportive then let the person go. Just be honest, Just tell the person, write them a letter, e mail them, so they don’t have a false representation of what your intentions are. That’s kinder to a person than to hang on and be a fake friend. Or family member. Every Dr that I talk to says the same thing, the hardest thing is the lack of support from family and friends and there not believed. Those are the words of the Doctors, it’s the highest complaint. Very Sad, that amongst the illness we don’t get the recognition that we are even sick let alone support from the people in your life. So if you are a family member of someone with invisible illnesses, learn about the disease, learn how you can help, not behind the patients back but from the patient “What will make your life easier”? Its not science, it doesn’t cost you anything, but be there! Remember we all die some day, some have a longer illness or life than others, so instead of nit picking, being abusive verbally, be supportive. Nothing hurts worse then being sick alone.

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