Quilting with disabilities

[Eileen K.]

Rachel,
I have green eyes. I'm of pure Irish descent. I'd never had problems, other than reading glasses, with my eyes. I thought I had a detached retina when the flashing started.
How do you get referred to a neuro-opthamologist? I've never even heard of them!!
eileenkny

[Jean H.]

I have Hazel eyes more brown around the inside more green toward the outer side, I have had spots in my eyes for as long as I can remember, they don't float, they stay in the same spot on my left eye and now I have noticed them in my right eye :?: :?: :?:
......Jean

[Eileen K.]

Jean,
What I mean by floaters are not what you see in the mirror when you look at your eyes. Floaters are those pesky little things in your vision. When I'm looking at the computer, for example, I see little specks and thingys that make it a little blurry.
Hope this helps,
eileenkny 8)

[Eileen K.]

Yes you are describing floaters. Those that move are usually not that uncommon and are usually ok. However, if you notice them only in one eye more then the other and they do not move, you should get them checked out. Ask your general practioner for a specialist. It could be something as simple as blonde eyes (I am sure there must be a more tech. term). One who he would send his mother to. If he says it is nothing to worry about. DO NOT listen! Another thing you should do is look at your meds. Certain meds. Will cause severe eye conditions. On this I recomend talking to your pharmacist (sp). He would have the most up to date info. on side effects of all your meds. For example one of my mom's meds. (I think it was for cholesterol) wreaked havoc with her eyes and liver. The point is you have a right to ask questions and get answers. If you don't like the answers you are getting or you feel you are not getting the service you need go somewhere else! Just because you primary doctor is your primary look up other doctors in your area. go in with a name and say "I want to see this Dr. I want another oppinion". If he gets angry, get a new Dr. He should value another oppinion. I now have about 8 Dr.s thanks to my car accident. I suffered from chronic fatigue, and muscle pain, lethargy, along with a slew of female problems for years. Finally one of my doctors looked at my med history. Looked at me in total amasement ordered a few blood tests. Then said "your Iron is at 7, B12 is bottomed out, you are depleted in sodium, and you most definately have Fibro. But we can not tell because until we get your blood levels up you are going to feel lousy." I just took my Dr's advise and slept more. I was an IDIOT! Ask questions, DEMAND ANSWERS! I wish I had earlier.

[Annette R.]

Rachel, you are so right about getting second (sometimes third and fourth if necessary) to figure out the best course of action. I am chronically anemic with hemoglobin that runs about 9 as average and once was 4.3 (scary because I didn't know I was sick - I have been told I could have had a heart attack or stroke with the least amount of stress at that point - thank God that I didn't do anything stressful and got a blood test for another condition which pointed out the low hemoglobin) Two and a half years later, I know that I bleed internally at times, have no residual iron in my system, don't absorb iron or B=12 through the digestive system. Why I have yet to find out.Hopefully the new doctor in Memphis will find some answers as he will be looking at my case with a fresh eye and viewpoint. So I understand your frustration when things do not go well. But look at all you have accomplished. Your weight loss is fantastic and you seem to have a very positive attitude which is probably your best asset when it comes to surviving the things you have gone through. I am in awe of you and your courage. Ann who works at being positive every day

[Annette R.]

Ann I hope everything works out for you and the new Doctor can help Happy

[Annette R.]

Anne, I am so glad to hear that fresh eyes are going to be looking at your case. I get so frustrated when I hear people say "well my Dr. said that he doesn't think I should be too concerned about it". I know that I was furious when I found certain things about my parents because they were too embarassed to talk openly about them they ignored them until the damage had gone on so long that it was irreversable. I yelled at both of them. My mother had a lump in her breast and dad had prostrate cancer. How idiotic! Do not ignore things tell your Dr.s everything no matter how small. I too am guilty of this. I had failed to say anything about how horrible my hair was and how much had fallen out over the past year. It wasn't until the Dr. seen my key chain with the photo of me and the boys last year on it. She commented how good I looked. I said That was when my hair was nice and thick. That did it HELLO BLOOD WORK 10! TUBES. lots of abnormals. Now off to see another DR. YIPPEE! Please write down a list of all of your symptoms no matter how minute and go over them extensively with your Dr.s. Sometimes the little things are what solve the puzzles Rachel

[Annette R.]

I know we lost a bunch of entries with the forum meltdown so I am going to give you an update on me and hope that others will do the same. The people who enter and reply here are truly an inspiration to me so I hope everybody gives us an update on how you are now and we can keep on supporting each other.

We are staying in Olive Branch Mississippi in a friend's yard and have been here almost three weeks (Aren't they great friends. Plus my dear quilting friend Dana lives near here so another bonus)
But the real reason we are here is because there is an excellant cancer and blood disease clinic in Memphis - the clinic I am going to is about 20 miles from where we are staying-. I didn't get the doctor I originally wanted. He is not taking new patients right now but the one I got seems to be excellant. Surprise surprise he listens to me and answers my questions with real answers and not the stock -you are a mystery- answer I have been getting. We still do not know the cause or treatment for my anemia but I am having a bone density test this week and may be eligible for a once a year shot instead of the daily or weekly medications that are in one theory part of the cause of my periodic bleeding. That is not the whole answer because I have been off it since
August and have still had two severe anemic episodes. But it would be one less problem to deal with.

The following week I go back to the hemotologist and have some more tests and get the results of the bone test etc. So we will be guests in our special campground for another two weeks for sure. but as long as we don't wear out our welcome I am here until I get some answers.

All in all I feel more upbeat about this whole situation now than I have for a couple of years (don't know why it took me so long to get up the gumption to try something new)

Ann (this is number two on my forum goal wonder where I will go next)

[Annette R.]

Ann, I'm so glad you're getting some more answers. Good for you, taking the time and effort to get the care you need, I see too many folks that just don't do it.

I'm continuing to take the Mucinex tablets morning and night for symptoms of fibromyalgia, but did switch to the Wally World brand since it's a good bit less expensive. I have noticed a marked decrease in the amount of muscle pain and stiffness, very little now, and a huge improvement in the "brain fog"--my concentration is so much better, and so is my memory. Not perfect, but if I go upstairs to get something, I now can remember what it was almost all the time, LOL.

Pat in Rockport, TX

[Annette R.]

Anne,
I am so glad to hear that you are hopefully getting some long needed answers. I only wish you could have had them years ago. I guess better late then never. I will continue to pray for you. I do not see how you could wear out your welecome that easily. So just don't let that worry you. Stay focused on your health.
Here in N.Y. I am currently looking for a Dr. that will take money. Yep I have no insurence except the accident ins. and the Dr.s that everyone wants me to go to will not accept that. So I am trying to get some sort of assestance. I never realized I would be in this shape again. I use to work my backside off to stay off assistance. Now I need medical ins. and here we go. WHAT A HASSLE! WHAT A WAY TO LOSE YOUR SELF RESPECT. Then my husband has a job so of course that creates an even bigger problem. I might not qualify for help because we make too much money by only a few dollars. So now I am looking for other alternatives. All because of a bus and weird blood work. I really want to go back to work. At my job I had health ins. vacations, and a paycheck. LIFE WAS GREAT :P I really am glad you are getting answers though. Lots of love Rachel
P.S. You wanted to know how things were going (sorry about the ranting)

[Annette R.]

Hi Ann, I hope you can get some answers and most of all, some help! It's so frustrating to ask a doctor a question and he just says, 'I don't know'. My son now has one arm shorter than the other because a doctor said that to every question I had, and I was too naive/dumb, etc., to say to him, ' get out of here and get me a real doctor!' You stick to your guns, girl, and use those suckers if you have to. You need answers and you need them 'Yesterday'!!!! Hey, that would be a good title for a song!!!

Rachel, my hair is coming out, too. I'm wondering what caused your hair to come out. If it's something you don't want to post here, email me privately. I recently started Lyrica for fibromyalgia. I've read on forums that people have had hair loss, but it isn't one of the side effects listed on the medication.

[Annette R.]

Rachel, can't you get insurance from the wreck to pay for your doctor? Who's to say that your problem is not caused by the wreck? Call your local congressman's office, or some govt. official and see what you can do. Threaten to call lawyers, raise a ruckus!!! And don't stop till you get what you need.

Sharon in TN

[Annette R.]

Hello Everyone.

I'm going to try to remember all I wanted to say here, LOL!

Ann I hope you are getting the help that you need from the Dr. now and getting treatment that is gonna help you get better. I think you have some great friends there at your side.

Those that have the carpal tunnel syndrome,"I'm agreeing with someone here" "get it taken care of before permanent damage is done" My carpal tunnel syndrome has turned into Arthritis in both hands,so I always have numbness and joint pain in both.They can't undo arthritis,they can just medicate for your joint pains. I've had to learn to live with this with out meds by my choice.

Rachel
I'm so sorry to hear about your insurance situation. I Know it's hard to ask for assistance through different agencies but "know that you are as deserving as any other person". All of your symptoms are relatives to Fybromyalgia,though I'm not a Dr.. I hope you find the needed assistance soon and you find a good Dr. and you get the needed help soon.

There is "Hope" with Fybromyalgia
My Fybromyalgia came setting in soon after a bad car accident. Though after having fybromyalgia over 10 years now, I have not really been having problems with it in 7 years out of the ten years total other than muscle acheyness and getting tired easily. I do have restless leg syndrome alot at nights. In the beginnings I had some really bad symptoms with my back/neck had alot of pain and I couldn't stand long periods at a time constant fatigue and I took about every med they had to offer in three years because of thier different side effects. Some kept me drugged up,some caused weight gain. I finally got off any meds but I do take 25mg. sleep med. not much. People have to be very careful because some meds can cause other health problems. Some can caused stomach Peptic alsars if not careful,I have them.I just wanted to let everyone know if they have fybromyalgia that it can get better,"this is the great hope I have for all". That you get better. Thier is great hope through this illness,and I wish you all to get better. I do have muscle body aches now and get fatigued easily. I may have learnt alot about how to adjust to many different symptoms, I've learnt my limits on alot of stuff yet I push them alot too. I also learnt I have to live with alot of aches and pains since I've gotten R.Arthritis. When I see others have it worse than me I've tried to rise above mine better. But if I get really down with it like I did afew months ago you're gonna hear me Scream! Dam(SP)! I've done it again,over did myself good,alot of pain is hard to go through and "everyone" needs support from Love ones.
I'm have all your backs here with Loving support and I do wish you everyone better through all your disabilities.

All my best to you everyone
Hugzzz,Kathy

[Annette R.]

Everyone Thankyou so much for all the encouragement. I usually keep upbeat. Just this past weak was tough. My blood work came back really weird. I have some money to pay for these Dr.s yet they won't take it. They would rather ins. While I understand having ins. is very nice. I just don't have any. The bus company is dragging it's feet and won't give my lawyer a time or date for sit down depositions. These have to be done by June. I feel aweful, and everyone tells me I look aweful. Plus I gained weight which I really don't need. By the way I am giving up sugar and simple carbs. Perhaps this will help. I also gave up coffee. Yep I've gone from a pot a day to none. :shock: mainly because I ran out and I refuse to buy more :? :?: The store in town is way too expensive and I am not going to the nearest town with a store until friday. How pathetic is that :?: :!: :?: Rachel

[karen f.]

I'm a faithful reader of quilting with disabilities but haven't posted here since I thought it was for sharing strategies and ideas that have helped you quilt better. I'm not sure if my situation is unique here but I have Parkinson's disease which is progressive and right now is affecting the right side of my body. Too bad I am right handed. This is where my hesitation to post comes in since my main adaptation has been to use my left hand more and that didn't seem too helpful to others. I have many little frustrations that add up but I know it is nothing compared to many others so it could be WAY worse.

I was feeling grateful for being blessed from my parents with a good outlook on life. Our attitude really makes such a difference in how big a deal problems seem. So I thought maybe that is something I could share. I definitely don't want to appear to say anyone is complaining or sound like I'm a Pollyanna. We all need to vent and share feelings with kindred spirits sometimes but looking on the bright side even if it seems very small makes a big difference.

I kinda don't like to have people need to help me with things if I can do it even real slowly. It makes me happy to focus on what I still CAN do the old carefree way rather than on what I can't do. I still have a lot of "can"s. You know how you think you have certain gifts? I always felt mine was that I can help people by making things so I had some trouble figuring out why that would be eventually taken from me.The other day I realized how good it makes us feel to help others and what a gift it is to us also. BUT there has to be help-ees in order for there to be help-ers. So there is my new mission in life to be a good and humble help taker and thereby make others happy! How's that for a plan? Anyway I hope I didn't offend anyone or sound like I think I'm something I'm not. Just want to say keep smiling!! Karen