Started as a good day
Well, first of all I guess I should introduce myself. My name is Roberlie and I have a multitude of illnesses for which support can only help. My most recent is that I am 1 1/2 years post op for my gastric bypass. I also have ME/CFS but checking into seeing if it could be Arnold-Chiari Malformation instead, hoping that it is since there is a very good chance of a cure. I am bipolar, as was my father and most of my family. Suicide survivor with regard to my father back in 1976. I also suffer from Interstitial Cystitis, Arthritis, Migraines, Fibromyalgia, Asthma (yea I know, quit the smoking.. have a ton of reasons to do so AGAIN), Chronic Back Pain, Radical total hysterectomy due to combination of endometriosis and cervical cancer, acid that was formerly Gerd but is no more, along with the host of things I know longer have because of the Gastric bypass surgery that I am happy to say are gone are: Diabetes, High BP, High Cholesterol, Sleep Apnea and GERD.. not sure if that is everything and doesn't count the endless array of symptoms that come with ME/CFIDS or whatever it comes from.. like tremendous tooth decay.. too much to mention.. but mostly need support from people who understand chronic illness.. sick of family and friends who think I can easily return to work.. I've tried it, failed and their continual comments (have a large family.. and been retired for 13 years) hurt and keep me wondering about myself. Often wondering if they are right.. I have to remind myself that I am no actress.. and if I am THAT good that I can fool the Social Security Administration and all my doctors than believe me I wouldn't be pulling in a whopping $1000 a month on disability when I could make millions acting! Anyway.. sorry for the rant. Sick and tired of being sick, tired, in pain and having to defend myself. I figured that today is the day to reach out to people like you who probably understand what I am saying completely. I HOPE anyway.. lol
Replies
hello it amazes me at the things we have in common. i also receive a dissablity (from the VA). and have multipl health problems. i am curious what isME/CFS and arnold-chiari malformation. just so i can understand what it is u r dealing with better.
Hiya Big Red! Love to see ya here.. ya we do have a lot in common.. ME/CFS is Myalgic Encephalomyelitis aka formerly known as Chronic Fatigue (immune disfunction Syndrome. Little is known about it.. they really know nothing except that it provides every symptom under the sun.. one writer reported that it was the immune system stuck in the ON position.. opposite of Aids.. (they do know that you don\'t get it sexually).. Anyway.. when the system is stuck on it fights phantoms and tries to kill something that isn\'t really there.. so it can\'t win and continues to fight. In order to fight it the body does everything it can to beat it.. causing fevers to burn it out, aches and pains, sweating to sweat it out, swollen glands to produce the necessary elements to the blood to get rid of it, diarreah to excrete it out, vomiting even to get rid of it. Truth is it does EVERYTHING it can frantically. Feels like the worst flu you ever had or like Chemo. As for the Arnold-Chiari Malformation.. I am looking into that.. a FB friend of mine discovered that his was indeed Chiari.. which is when a portion of the lower brain actually distends beyond the scope of your skull.. I guess 1 in every 1000 people have this malformation but almost all of them have no symptoms and its ok.. however, of those that do have symptoms it is very similar to ME/CFS in how it presents itself. I am hoping that is what it is and looking into getting and MRI which will clearly show if that is the case or not. IF it is.. it could be very very good news.. It would require brain surgery to release the pressure of the skull against the brain which eleviates the symptoms. It\'s a cure!!! LOL and the surgery has never had a fatality and also is 80 to 90% effective to cure the issues! Wish me luck. The other thing about the Chiari is that ME is questioned so deeply that people actually accuse you of not being sick. They see you on good days and they can\'t really SEE that you are sick. There is no proof in ME/CFS that you are not well. With Chiari I would have proof and more family support.. I HOPE! Since I could prove it with a picture and heck.. how can they refute brain surgery? LOL I can only hope as the issue with family far exceeds what I have to endure with the illness itself.. it hurts terribly. However, since they already see me as a hyperchondriac I\'m not sure that anything I say will be accepted and respected.. so even Chiari may not help in that area.. however, if it cures me then I won\'t need their support for that will I? LOL so I\'m hoping!
1/25/2012. Today would have been my father\'s 65th Birthday. He committed suicide on 11/4/1976. So far it doesn\'t seem that it is bothering me too much. In the past the days of his birth and death would provide deep depression. So far so good. As for how I woke up.. I woke up feeling tired and weak and pain in my legs. Nausea of course and stomach pain with aching all over. I have to get in a shower today its been .. well embarassingly too long.. I have to shop today as well for groceries. Being disabled you live pay check to pay check and by the time you get paid again its pretty much and emergency situation.. well today is pay day. So I have errands to run. My house is DISGUSTING and I can\'t take it. My husband is leaving messes everywhere thinking I guess that the MAID, (yeah its me) will take care of it.. I\'ve had it with that.. he knocked over a clothes basket and left it there.. so am I.. he is leaving dishes where ever he pleases.. so am I.. and all in all just not being and adult.. its like having a child.. does nothing to help me and precious little at all.. well.. so am I.. I am tired of pushing myself beyond belief to do what little I can do only to have him carelessly make more work for me. I give up. I wonder how long before he sees that its just not going to get done! Anyway.. hoping beyond hope that the shower I take will not wipe me out for the day.. it has in the past.. sometimes they help me to feel better and other times its just too much exercise.. today it NEEDS to help. Wish me luck!
hi rob. ive never herd of that kind of propblem be for (not a big surprise to u i know) it must be horrible. we have all had the flu, and i just cant imagine living every day of my life with it. so for that reason i hope it is the other thing,and that brain surgery will fix it. as for ur family thinking u r a hipocodriac (sorry bout my spelling)my be if u could get ur dr to print out an explanation like the one u gave me ,then they would undstand.
as far as ur husband. they r all little boys. no matter how old they get. do u think that reminding him to help out by picking up after himself might work better than both of u not picking up? i mean just like a kid u have to remind them every once in a while lol.
I saw the doctor yesterday for several reasons.. not just as a followup to an issue where I woke up paralyzed.. but also because we are going to check through a cat scan whether or not my ME might actually be the Arnold-Chiari Malformation. I have to go for the scan tomorrow morning and told I should hear the results before the end of the day. He also prescribed a new med for both depression and pain to be used with my Cymbalta, its call nortrypteline. I took it before bed last night as instructed and woke up very numb, foggy, and druggy feeling. I guess it takes time to adjust. The thing is this week I start with one pill and next week I go to 2 pills each night. It will be interesting to see what 2 pills will do! I don\'t feel like I can function like this at all.. again I guess I just have to wait and see how I adjust. Woke up with headache, nausea, tired, numb, achey in the knees and shoulders.
Woke up with a banging headache, stiff all over, knees hurting, shoulders and neck hurt, nauseous, and foggy brain from the new meds. I had full blood work done ordered by my surgeon (RNY) and had a cat scan done in hopes they might find the Arnold-Chiari Malformation.. no sign of it.. so no cure for me still I guess. Not talkative today.. think I will get some more sleep..
Interessting. Also, have you checked into Celiac disease as well? A friend of mine got onto a non-gluten diet and it really helped her a whole lot.
No I haven\'t, but a good number of years ago I did try the gluten free diet.. did nothing for me :(
Woke up today with yet another headache, nausea, ankles hurt, neck hurts, glands are swollen, foggy STILL from the meds, sweating a lot, blurred vision.. you just name it and today I seem to have it.. so far not as tired as usual though so that is a good.. count my blessings, at least I have this little bit of time.. usually catches up with me very quickly though.. keeping my fingers crossed that today is different
Well you are doing the best you can. Chronic illness is hard for people and I am glad that you are here for the support you need.