A Little Freaked out
AnonymousJuly 17, 2008 at 1:10 am
[FONT=Tahoma][SIZE=4][COLOR=sienna]Hello every one,[/COLOR][/SIZE][/FONT]
[FONT=Tahoma][SIZE=4][COLOR=#a0522d]I have not been on the board in a while and I am sorry for not being more helpful to all the new people. I was actually enjoying life for a good month or two and sort of trying to put all my health stuff on the back burner. It was nice. But for the past three months I have had this nagging eye problem in one of my eyes that has been causing me discomfort and concern. Got an MRI and several tests to rule things out. Today I spent [I][B]five hours[/B][/I] at an opthamolic neurologist. Went through a gauntlet of tests and am being sent tomorrow for more. The probable cause of this problem is an ocular emboli which can be an indicator of heart problems and strokes. I guess the “good” news is that it is not demylination of the nerves and that if I can catch this thing before it bursts I am in luck. It just makes me really scared about how quickly my body seems to be deteriorating. I have been so proud of being a 33 year veteran of Diabetes and not getting the typical problems from it. But man, I hit 40 and I feel like my life is getting shorter and shorter. This past year has really forced me to appreciate life like never before and for the first time in so very long I have experienced some peace and joy. I just don’t want it to end yet. I would like a couple more decades. I am grateful to at least know what it feels like to love life. My partner went away on a short trip so I am alone and a little freaked out. Hopefully tomorrow will go smoothly. I will know the definite results of all tests in three weeks so it’s a day at a time as usual. Oh, by the way, the neurologist today questioned my diagnosis of CIDP as I did not get full workup on diagnosis and he thinks I “just” have Diabetic neuropathy. That really sent me after all that I have been through this year with getting treatments and accepting the diagnosis of CIDP. I guess I can’t rely on a one time visit with a neurologist who isn’t even being asked for his opinion on the CIDP, but it made me a bit concerned. I am just so tired of all of this. Anyway, thanks for listening. I hope all is well. [/COLOR][/SIZE][/FONT]
AnonymousJuly 17, 2008 at 4:26 am
Linda, Keep holding on to the peace that you have found the last couple months. It is a GOOD thing for this neuroophthalmologist to be thorough and to rethink through things, although it is unsettling. I hope very much for you that you are found to not really have a demyelinating process, because it would be better for you even if it is unsettling to have people rethink things and shake up your current space. Maybe he was just thinking out loud. Whenever someone has more than one problem, medical people try to see if it might all be explained by one thing.
It is great that you have had the opportunity to appreciate life recently.
We will be thinking of you with the testing tomorrow and the unsettledness that the next three weeks may bring.
WithHope for a cure of these diseases.
AnonymousJuly 17, 2008 at 5:33 am
Linda, I’m so sorry you are going through a rough time right now. I’ll be thinking of you with the tests today. Hang in there, I know what you mean about turning 40 and falling apart but it’s not just us – it happens to everyone, ours is just a little more obvious.
I am curious as to the results of your test so I hope you’ll come back and post what happens. Try to remember what that peace felt like, it’s still there for you.
July 17, 2008 at 8:22 am
Glad to hear you have been having some fun!!! About the cidp/diabetic neuropathy, I am confused. Is there a difference? I have read that most diabetics go on to get cidp. If there is a difference, they must react the same to ivig. You have improved so much with your treatment plan since you joined us here, it does not even seem like it matters “what kind” of cidp it is. Don’t let the doc break your forward progress. Hope your tests go well and you get the eye issue under control.
Dawn Kevies mom
AnonymousJuly 17, 2008 at 8:52 am
I just want to add my warm wishes to those of everyone else here. It is always stressful, isn’t it, when we face the unknown but as you said it will be good if they catch this early and can get you treatment. Hang in there and hang on to the memories of peace you have had the last couple months. They will get you through the nest couple weeks.
AnonymousJuly 17, 2008 at 2:39 pm
Hi-just adding my best wishes to you along with everyone else. Each day is so very different for us, sometimes-some days do bring us peace and you revel in those days. I would strongly encourage your neuro to stick with the current plan that has helped you, no matter what he wants to call it now! And stick close to the optha. neuro and watch your eye right now-that, I would think, should be the top priority, especially if it is a possible emboli-stick with the other treatment and take good care of your eye. And, like Julie said, please stay in touch. Good luck on your tests. Wishing you peace and adding you to my prayers. Emma
AnonymousJuly 18, 2008 at 7:29 am
I had been wondering about you. I hope things work out. I read about diabetic neuropathy a while back when some things were going on with my mom and it does sound alot like CIDP but there are differences. We roll along thinking one thing and then they tell us another.
I’ve recently been diagnosed another blow myself…but, I’m doing all I can…not to let it get me down. Hang in there and my best wishes are with you.
please keep in touch.
AnonymousJuly 18, 2008 at 2:06 pm
I am glad you updated us. I have missed you…..I am so glad you have had a peaceful experience….now you gotta share how did you come about this revelation? I go back and forth between I can do this and I can handle this to what will my future hold….will I see my kids and grandkids grow up and be able to enjoy them? Will I ever get back to work? I have learned so much about myself as I am sure you have. You are a strong woman and can weather these “storms” You have done it for 33 years with the diabetes and that in itself is no small feat. Take Care,
AnonymousJuly 20, 2008 at 12:11 am
[COLOR=Indigo][SIZE=3][FONT=Book Antiqua]Hello Everyone and thank you so much for your responses. I gave my 16 tubes of blood on Thursday and had the MRA on Friday. I am so glad this week is over. Now it is just a waiting game. So I am just taking it easy and enjoying my gardens, teaching myself how to make sock monkies and talking to friends. Today I went to the movies and dinner with my neice and sister in law and laughed a good portion of the time. Humor is so healing. So I am doing better than a couple of days ago. I am so grateful for all of you and for the other people in my life. Jan, you asked how I came to the revelations I came to. I think it is one of the blessings of getting sick and having to suspend what you knew as life before. We get to re-evaluate what and who is important and what really matters. And we are forced to go places emotionally that maybe we would otherwise avoid. So much like everyone on here, I sit with myself, go through the discomfort of the unknown, and peared my life down to the most basic and richest core. I don’t know, maybe it is the relief of not having to work and finally getting some relief and seeing that I have everything I need that has given me this sense of peace. Gratitude is a big thing too. Trying everyday to be grateful if even for the smallest thing. Like watching my dog eat his little “greenie” or looking around at my home and knowing I am safe and loved. Laughter is also very important so I watch funny DVDs and hang with funny people so that I can at least work those stomach muscles. So thats my personal prescription for happiness. Stacey, I am concerned about you so if you want, please PM me. Everyone else, thanks again and I am thinking of each of you with love. I will let you guys know what happens with this eye business ASAP. My appointment to see the Opthamaligist is August 8th so…
Take care all.
AnonymousJuly 20, 2008 at 12:07 pm
While I am new to the boards and haven’t yet had the pleasure of getting to know you, I am glad to hear that you are doing better than when you initially posted 🙂
I’m also doing the test waiting game while I wait for the results of my lumbar puncture. It can be difficult to not worry about it but it sounds like you have found ways to keep yourself in good spirits.
I’ll keep you in my thoughts and prayers.
AnonymousJuly 22, 2008 at 12:55 am
I have made an appointment with an ophthalmologist neurologist and it will take about 3 hours for the testing.I want to know how much of my vision problems is due to CIDP and/or new glasses. I have that strange “depth of field” sensation and see lots of whirly things across my vision.He’s suppose to check my eyes the same as any eye exam plus the other goodies I may google about. He was suggested to go see by my own neuro.
Sorry he said he thought something else that upset you.Doctors can be rather odd-so I’ve found out.
AnonymousJuly 28, 2008 at 12:43 pm
[FONT=”Comic Sans MS”][SIZE=”2″]Linda
So glad that you are back but sorry for the anxiety you are living with. Sounds like you have your priorities straight and your mood sounds up beat.
Seems like i spend too much time playing solitaire on the computer, avoiding introspection, maybe i could take a page from your book.:)
Thanks for sharing and i wish you all the best.
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