fairly_odd_mother
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February 10, 2011 at 3:21 pm
@ Synthia beautiful cookies and cakes!
@ Kevin congrats on your mile
@ the others….I am glad to read positive things! Hope it continues!
We got a couple of very very last minute opportunities and have work to look forward to *yeehaw!!!*, counseling seems to be opening things up for me (changes are hard and facing yourself is painful), things just seem to be okay right now. Which is a far cry from the “where the heck is the bright side to this?!” we were going through. Plus hubby and I will be working on a project together that has been a long time in the works. I am very excited about it and can’t wait to see it finally come to life!
I pray everyone continues to have hope or at least find it along the way, to see a bright side, know that tomorrow may be better than today and if not there is always the next day to look forward to, and healing emotionally, mentally and physically.
HUGS all around
February 10, 2011 at 3:08 pmhave to put in my say….I had changes since gbs with my own vision. Blurry for a time, not so blurry, night vision has decreased. I find myself blinking to clear my vision a lot of times but it doesn’t always help. Dr said it could very well be nerve damage but have to see a dr with the proper machine to verify it. I can usually read my screen but even that seems blurry or seems to tilt or be almost doubled after a bit. This happens frequently and i never know when it will hit.
Bifocals are my new friend. Although reading the same page over and over without realizing it makes reading not so fun anymore. I miss plowing through book after book!
Hope it turns out okay for you, but yea get it checked out, give glasses a try, and I hope you can enjoy reading again. You may experience a “change” and have to get your Rx checked a couple of times maybe more because it may seem that your vision is still ‘off’. Or you may be just fine. Good luck!
January 1, 2011 at 10:20 pmI have to let you know that I only did the artwork, the actual baby photo belongs to a wonderful photographer named Tracie that is gracious enough to post photos of her beautiful children and family for stock usage. Proper credit for my images can always be found in my gallery 🙂
December 27, 2010 at 6:48 pmWhat a nightmare!!!
I tried the new meds finally….pharm was out of stock on everything….The sleep aid caused a great deal of nerve pain and so much burning and tingling that it was hard to even relax with that in my system. I have had a bad day dealing with my muscles feeling as if I have worked out or ran a marathon. So much burning and tingling and discomfort. The anti anxiety one did nothing but make me feel buzzed and out of sorts. I hate that feeling and have it often as a residual anyhow that I would rather deal with anxiety attacks and monkey chatter and my nerves screaming at me than the feelings of the drug. Oh the sleeping stuff says not to use if you have myasthenia gravis…am I confused or is this not closely related to GBS? And if someone tells a dr they suffer from constant tingling and muscle burning why would they prescribe a medication that has a side effect that causes that?! Anyhow, no sleep but TONS of monkey chatter and lucid dream state and chest pain (thought it was an anxiety attack and told myself it was my imagination….it just happens to be a side effect of temazepam that I was unaware of) when I finally was able to relax enough to pass out. I have an appt tomorrow and will be telling the dr about my reaction. I don’t care how closely related a medicine is, there is a reason it is called something else instead of going by the name of what I am already on. I have had experience with “closely related” meds in the past 4 years and have not had a good outcome. I just want to stay on what I have and feel actually kinda works. I am scared now to even touch the tramadol because of the side effects it causes. Why is it so hard to find something that works when you have been hit with GBS?? And then to probably have fibro on top of it makes things even worse. Ugh.
December 25, 2010 at 8:30 pmPsych eval was interesting. Have more to deal with than I thought and have been diagnosed with PTSD because of the gbs and my mothers sudden passing. Also been diagnosed as major depressive disorder. My meds have been added to…was hoping to get off of everything, but that is not the case. I feel like a walking disaster. Oh but I did mention some things and the woman added some of her own before i finished my list and then told me she strongly believes I do have a fibro overlap and that is causing even more issues than the residuals I had been dealing with. So she is getting me a referral to a pain management clinic. Not sure what they do or how they can help nerve pain stop without turning me into a medicated zombie, but we will see. At this point I am willing to try almost anything.
I was given abilify—the research I did on it does not make it sound like a good idea since I tend to be so sensitive to things and this one actually is known to cause anxiety, insomnia, suicidal thoughts and tendencies, vision problems, GI upset, and all sorts of other things that I am already dealing with anyhow. Like I need more numbness and tingling! Not adding that one to my list.
Changing from xanax to klonopin(sp) since it lasts longer.
also going to be put on a sleep aid that is in the same family as klonopin and xanax since i tolerate that “family”weaning off the Savella because I honestly do not believe it is working any longer. And have been given Tramadol as an as needed pain reliever (what if I hurt all the time??). Tramadol side effects kinda creeped me out too. But I may not have to deal with the effects I do with codeine based meds.
The whole thing worries me because I am so afraid of things affecting my breathing at night. Since i got sick that is a huge fear of mine and i am careful of what I take and check and recheck side effects because now i tend to have the “serious” or near serious ones with things I never reacted to before. Hopefully I don’t have bad reactions and can get some much needed relief.
December 21, 2010 at 3:57 amI have a “going well”! I just got word that a photo of mine that recently won a contest will be published in a book (not one of those ‘if you buy the overpriced book we will make sure your info is in it) and I am up for Photographer of the Year and Image of the Year for 2010! The book will be sent to the contests sponsors and other photography people, and the exposure will be very cool! Winning the big prize would be way awesome but just to be included is exciting. I will find out more in the next week or so. Am crossing my fingers and doing a happy dance LOL!
Have some digital artwork that is getting a lot of attention as well. Encourages me to try harder and come up with more ideas. Hard to sit very long to complete them all at once sometimes unless they come together quickly, but I enjoy the process and the ability to express myself.
Thanks for letting me share. Hobbies are nice to have.December 21, 2010 at 3:50 amsorry to hear your mom has had so many issues and is now dealing with this…and you too as her caregiver.
My father had ALS and from the stories I remember my mother telling me, I don’t recall it progressing this way. Of course they didn’t have IVIG back then so I have no idea if it would have helped him or not. It sounds more like MS or CIDP. If it is indeed ALS I have not heard of it starting in one spot and then suddenly going to another. It usually stays in one place and progresses from there I thought. Like it may start in an upper limb and progress slowly or quickly depending on the person, or it may start in the lower limbs. Something about her symptoms just don’t sound right, and don’t sound like they fit with the ALS diagnosis.It also seems ‘late in life’ for an ALS diagnosis, I would get a 2nd and 3rd opinion fast! If she has had issues “all her life” there may be something else going on…could she have had a case of GBS early on or CIDP and with age it is now flaring up or relapsing? I assume they ruled out a stroke? A mini stroke may not show up on an MRI, my mothers didnt. Diabetes? I am even thinking post polio syndrome. Polio was usually mild in a lot of cases, like the flu and most didn’t even know they had it. I am grasping at straws trying to find a puzzle piece for you.
I have a strong feeling she may have had GBS or has had CIDP and it is causing her problems now due to age, stress, and maybe other factors. Let’s see what others have to say about this. We have some very knowledgeable people here and I bet they can help ya a lot more than I can. Please keep us informed…I really don’t think it is ALS and would definitely get another opinion on all of it esp that because that is telling her she has an expiration date and she doesn’t need to even be thinking of that right now.Prayers and hope to you and your mom
December 16, 2010 at 1:19 amthe intake process was interesting. Turns out I guess I have a lot more to deal with than I wanted to admit even to myself. We set some goals, and he offered couples counseling and family counseling if I thought it would be a good idea. I will go to a couple of sessions on my own and we will think about the other stuff. The questions they ask are pretty intimate and deep, and admitting to things or recalling things was not a pleasant or proud experience. We will see what happens from here. I have to get a hold of them because they said something about 3 appts for different things, but set up a counseling appt on the 28th and didn’t say anything about the other stuff. Hmmm.
Also going to call and ask for a referral to a rheumy because apparently that is who I should see about the increased pain and stuff. Counseling is fine, but I dont think that will address nerve damage and other issues. Or I could just go on hydrocodone daily, that helps…I’m a zombie but with the anti nausea medicine I not only sleep but feel a lot better pain wise. Not sure what to do.
Anyhow thanks again for the support
~Lori
December 15, 2010 at 12:46 amthank you for the prayers. Much appreciated and helpful!!
Tomorrow I see a psych for an assessment. My doc thinks the depression needs to be addressed. Now I went in telling him I wanted to explore the fibro side of this and I get sent to a shrink?? I am not sure i understand exactly how that is supposed to help, but i swear if any of you hear a scream it is me…being told it is all in my head—again.
I dont know what I am supposed to get out of this. Other than possibly dealing with things I have not dealt with, maybe even getting over being so angry about getting sick, accepting my limitations and new life, whatever. But It still doesnt address the pain and the limitations I do have, and that is what I was looking for. ugh. Seeing a shrink makes me very nervous.I’ll let you know how it goes.
December 4, 2010 at 6:22 amearly on, alcohol would cause my system to negatively react. Usually with an instant headache after only a sip of a beer. I was unable to enjoy a drink for 3 years!
Now yes meds could cause issues, talk with your doctor. Doctors always double the amount you admit to having….my own admitted this. I explained I have to be honest with him because my health is a very important issue, beside I am an honest person. If I say I have a beer or three a week, that is what I have. No more no less. I talked to him about being able to enjoy a drink in spite of the meds I take, he said as long as I am not drinking a 6 pack a day and hopefully not more than 2 drinks preferably, then he was not concerned. I am not giving you the okay to drink, just something to talk with your doctor about for his advice.
November 24, 2010 at 2:36 amNGG
check walgreens.com often. They have sales on it, sometimes 2 for 1 and you can also sign up at the Nature made website for coupons and special offers to combine with the sales. They also offer an incentive program for “prizes”. I almost have enough points to get my yoga or pilates dvd!
Also, if you are up to it, you can try colostrum from New Zealand. I took that and added Arabinogalactan when I first got sick (along with exta B vitamins). Do some research on the colostrum because it is a growth hormone and I have read that there is some risk to people prone to breast, lung or testicular cancers. I know when I took it, my hair grew like crazy, I felt better, and honestly think it helped keep me out of the ICU, or maybe I really am THAT stubborn. There is some research that is helps heal nerve injuries. I am not a doctor, I just do a ton of research and have tried a lot of things. If I could afford it, I would give it another round. They say 8 weeks to see a change. The arabinogalactan is a great immune booster. It also helps regulate an overactive immune system. Just a thought to consider.
Also take into consideration Low T. I know it is the Buzz Word of the day, but hey ya never know. There are natural ways to take care of that as well without shots and driving your family crazy with testosterone side effects.
Just wanted to give you some alternative ideas to research.
November 24, 2010 at 2:17 amI am thankful for being able to walk…even if it isnt hiking and climbing hills anymore. I am also very thankful to be able to provide a meal for my family…
I am also thankful for finding this family when I needed it most. Thank you to all who have helped me through the rough times and filled me with information and strength!
Happy Indulgence day 😉
November 21, 2010 at 4:24 pmHave researched Sam-e but never read anything about remylenation (sp). Just supposed to increase mood due to lack of Sam-e in our systems. It also has a nasty side effect of stomach upset in a lot of people, hopefully not you. Hubby gave it a try for a bit but was unable to tolerate the stomach upset. Did nothing for his mood.
November 20, 2010 at 2:28 amhavent heard anything about this. I do know the Botox I was looking forward to in my “growing up” has been ruled out because it can cause trouble in GBS patients. I wonder if the other would be the same?? I definitely think more research is needed.
November 10, 2010 at 3:31 pmis this vertigo the kind where you feel dizzy but it is more of an “inside your head” feeling? I have had the floor fly up to meet me even though I was standing perfectly straight up, didn’t fall, didn’t do anything but change the position of my head. I often feel as if my head is detached from the rest of me, a far away feeling of movement and it is very very uncomfortable. Not sure if any of this is what you are experiencing. But I do believe that our nerves control so much of what goes on with us, that vertigo related to GBS is a possibility. I never had what I experience before getting sick. I am 4 years post onset and it comes and goes, not nearly as bad as it used to be so I hope yours clears up soon.
