quiltys41 Posted May 17, 2008 Share Posted May 17, 2008 A lot of you may know that I have been getting some medical tests done of late for a variety of reasons. I got most of them back yesterday. The really good news is that I am NOT pregnant at 48 lol! But according to another blood test, it isn't menopause either so that means more tests... The MRI was a mixed bag so to speak. While there are no tumors or anything wrong with my brain (despite public opinion to the contrary some places lol! ), my upper cervical spine is a big mess. I have what they are calling cervical spondylosis with myelopathy. I think I would have rather had a tumor to be honest. This other is kind of (in simple words)...a cross between arthritis, Parkinson's and muscular dystrophy in the top of your spine which is where a lot of things are controlled. Such as upper arm movements, fine motor skills like being able to hold a needle, etc...the myelopathy part means it will eventually involve my legs also and probably my ability to swallow, walk, etc... So, best case according to the docs is this (since I am a poor candidate for surgery)...I end up having to use a walker, and even that will be a challenge....worst case I end up not able to walk at all and wheelchair bound. Time line is uncertain as to when all this will happen. Doesn't sound like they have done much in the way of study on this to me. But...I will not let this get me down! I will still "stand" strong in the Lord even if I have to sit down to do it lol! I totally trust in Him and lean on Him. I know there is a reason this is happening and only hope that some good will come out of it. I will do this gracefully lol! Maybe, just maybe, out of all this I can set an example of His loving kindness to someone who really needs to see it. And even if I never know who that someone is...it's okay because it all will give the glory back to Him. And I just pray that He will touch my DH from time to time with peace and with His love. I do believe it is harder on the caregivers in this kind of disease than it is on the patients. So if you think of it once in awhile, please keep my hubby in prayer? Thanks yall...you are a tower of strength and a blessing indeed. Q Link to comment
Jeepers Posted May 17, 2008 Share Posted May 17, 2008 As you said, "the time line is uncertain." A lot can happen between right now and if/when you need to sit down. You will be just as valuable then as you are now! Fortunately for you, you have the Lord to lean on. You already touch hundreds of people right here even though you don't get to do it face to face. I'm sure there are many more out there that will look to you for inspiration. Of course you and your husband will be in my prayers. Link to comment
Snowmom Posted May 17, 2008 Share Posted May 17, 2008 quiltys41, I'm sorry for this news, and will be for you and your DH. We had a young man in our church who was as long as I knew him, had always been in a wheelchair and unable to talk. He could make sounds, but, you couldn't understand him. Of course that was a very long time ago and he was several years older than I was at the time. He was in the nursing home when my niece was in town, and he has gone home to be with our Lord since this time. You never know who you will help and who you will inspire when you are in different conditions. God will bless you and your family. Link to comment
Becca_Anne Posted May 17, 2008 Share Posted May 17, 2008 It is always a bit scary when you are faced with such a serious health issue. I hope that you are able to find the medical advice and support from those who are truly experts in this condition, and your condition progresses as slowly as possible and you have the support you need when the time comes. A website that might be helpful in finding those experts: http://www.rarediseases.org/ From my own recent temporary incapacitation the only advice I can give is to simplify everything, set the house up so it's easier for you while you still can organize it. I am massively purging everything to what I truly love, use and need (preps are a need ) and letting the rest go. Less truly is more during times like these. Link to comment
Stephanie Posted May 17, 2008 Share Posted May 17, 2008 I'm so sorry to hear this report and I know your mind must be whirling in many directions from the very thought of it all. Just remember, only God knows the end of this thing. As we like to say around here, prepare for the worse but hope for the best. I don't know anything about this particular illness, but I do know a good bit about the Great Physician. I know that when others are shaking their heads, throwing up their hands...He is still able to step in give Divine Intervention. If you ever need an extra prayer or an ear to bend, I'm here! Link to comment
MomM Posted May 17, 2008 Share Posted May 17, 2008 (((Quilty))) I am so sorry for this news. BUT, will be praying for you and your DH. God is the great healer, and He will take care of you. Link to comment
Mother Posted May 18, 2008 Share Posted May 18, 2008 Quiltys, adding my prayers and love to all the rest and especially for your DH. Dealing with my own vanishing health and inability to do even some common things I know first hand the toll it takes on our loved ones. It is not just 'we' who have the disease but our whole family. Be open with them. Talk with them about possibilities and what might need to be done. Think and talk about what might make it easier for all. It's a good idea to prepare for the possibilities now. We are remodeling so are able to build in handicap features but it's hard make them so they can be used either way. Extra large wheelchair accessible shower will be our next project. DH says we're going to save water cause he's going to shower WITH me. LOL. After that comes a new stove. We need one and are going to get a drop in cook top set into a lower counter for ease of cooking setting down AND for canning. It's really difficult to stir or handle BIG pots on a higher stove and I've had a lower canning stove for years. This one will be multipurpose though DH will have to lift canners if I'm chair bound most likely. We like to go to flea markets and etc and are constantly on the lookout for used handicapped equipment. Anything that will make it easier for DH to care for me and for me to lead a nearly normal life as long as possible. I love your attitude, Quilty's. I'm going to borrow some of it if I may? Daily I tell myself that with the Lord's help I can do anything I need to. Link to comment
Virginia Posted May 18, 2008 Share Posted May 18, 2008 My heart and prayers go out to both of you, Quilty and Mother. Never know what life will hand us, but to handle it with grace and faith is the best attitude. I heard of an older lady here that attended her church long after most of us would have stayed home with the crippling arthritis she had. One day she was asked if she ever asked God, Why me. She said no, she just thought, Why not me. I hope I might have that attitude, and the caring you both have should I ever face such difficult days. Link to comment
ArmyOfFive4God Posted May 19, 2008 Share Posted May 19, 2008 Your peace, faith & strength is AMAZING!! Keep that up sweetie! I'll be praying that you DO stand strong in the Lord without having to sit down to do it!!! Link to comment
quiltys41 Posted May 19, 2008 Author Share Posted May 19, 2008 Thanks and blessings to yall for being so sweet! It's going to be a tough row to hoe, but life has been that way and maybe it was to prepare me for such a time in my life like this. I know He will walk beside me and carry me if need be. And I am sure there will be a lot of times I will be needing it, but I am going to keep the whines to a minimum lol! I just think that I have been blessed with a great understanding husband that is able to help me with the limited mobility issues. In return I show him my faith in God through all this, and it brings his walk with the Lord closer too! So even though it will be hard, sure, but if it brings DH and others closer to the Lord in the process, it's all good! Mother...we are doing the same here. We already have the wheelchair, other medical equipment, special kitchen tools and gadgets for limited mobility folks (DH has severe RA and is pretty crippled in his hand especially) but always on the look out for more. As to the attitude..well now you can have as much as you need lol! Seems I overheard someone once say about me that I had enough attitude for half the country hehehe. Thanks again for the prayers and well wishes. They mean more than you could ever imagine. Q Link to comment
Virginia Posted May 19, 2008 Share Posted May 19, 2008 I think your attitude is mighty good, so half of the country should be in good shape. Thanks for sharing with us. Link to comment
dogmom4 Posted May 21, 2008 Share Posted May 21, 2008 I'll be praying for you and your dh Quiltys... Link to comment
JCK88 Posted May 21, 2008 Share Posted May 21, 2008 Adding prayers here, also. and HUGS Link to comment
cookiejar Posted May 21, 2008 Share Posted May 21, 2008 Praying for strength and fortitude and serenity... More prayers and hugs Link to comment
MomM Posted May 22, 2008 Share Posted May 22, 2008 (((Quilty))) and prayers for you and DH. Link to comment
ArmyOfFive4God Posted May 22, 2008 Share Posted May 22, 2008 In light of your comment on sitting down, I felt so strongly the need to post this. I know we've all seen it before, but HE will carry you!!! ~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~* One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky. In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there were one set of footprints. This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints. So I said to the Lord, "You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there have only been one set of footprints in the sand. Why, when I needed you most, you have not been there for me?" The Lord replied, "The times when you have seen only one set of footprints in the sand, is when I carried you." Link to comment
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