Hi Stacey! I agree with everyone else about getting an XRay! I was watching the news last night and saw the temps across the US when they showed the National Weather. It’s been hot here also but has not reached that temperature yet! We are getting the high 90’s. But that same heat wave is headed our way! LOL!
Do me a favor! Go outside and take a big puff and blow that hot weather to Canada! LOL! I won’t mind!:D 😀 😀
I am not a heat tolerant person! I can’t wait to see the fall get here! I love the fall and spring. Cold winter and hot summers drag me down!
Hope you feel better soon! I too am thinking about Conner at night. I just don’t want to see another child with CIDP or GBS! I want to see my children healthy. But I know two of mine have problems like me. Not as bad as me because I caught them in time but you always have that fear they end up like you!
I cried and blamed myself when my daughter too got diagnosed with Lupus. But her’s so far has not been as bad as mine. Maybe because we caught it early and knew what to test for! But being a mother! You still worry! I will keep Conner in my heart and prayers and hope this is just something very minor that can be treated. Hugs
Hi Stacey! I truely feel you pain! When I got diagnosed with Systemic Lupus and found out it could be inherited I watched my children like a Hawk! I did not want them to go through the living h I went through trying to figure out what was wrong. Then getting CIDP on top of that too has not been easy getting diagnosed.
One of my daughters a few years ago tested positive for Lupus and she too now has my disease. When I found out I cried like a baby for I didn’t want this to happen to her! Then my other daughter which is the baby and only 25 got diagnosed this year with Rheumatoid Arthritis. More tears were shed!
It hurts to see your child getting sick and possibly getting something you have. Or something like it! Something that we don’t think about is our genes. Although you are the first one that you know about, there could have been an ancestor that your parents don’t remember. A great great that may have had problems.
I was the first with Lupus I thought until years later. I found out my great grandmother in her early 40’s died and was bedridden for years. Back then they had old country doctors and he called it crippling arthritis. By what my great great aunts have told me I swear up and down she had lupus but never got diagnosed as that. Her genes somehow landed in me and I passed this into two of my daughters.
Connor might not even have CIDP or anything serious going on and I do hope that for you. But! What caused your CIDP? And could it be possible for him to inherit it? Rare but it’s possible. Not much is known about CIDP but they are getting more answers researching these problems and the causes.
I am praying for you and Connor right now! And do hope it’s just a minor thing. But I know you as a parent! You will be like me all these years watching and observing your child as he grows up. And people that are sick can see another person and see the signs of illness better than a doctor. I sae my two daughters and just knew something was wrong and I ended up being right!
I pray for your sake that this is just something minor and nothing else! Will keep you both in my prayers! Hugs
Hi Stacey, I hope you have a lovely vacation with your husband. I actually had to sleep on the post that I was going to leave for you. I just wanted to tell you I know your frustration very well. Your cane is an important asset to you right now. You will find yourself yelling at yourself quite often with CIDP. I am also stubborn, proud and fight CIDP every step of the progression of the disorder. You seem to, as a lot of us, want to keep our independence. I found when I walked with a cane nothing could slow me down. I also have drop foot and was call egor. But it is just a name. I still was able to vacuum, dust, mop, and normal household choirs, drive, go to extracurricular activities with my children and drive over 1,000 miles a week all with a cane attached to me. But it doesn’t mean that I didn’t get frustrated sometimes because I had fallen or just couldn’t keep up with others. I finally came to the fact that I work at my pace and not their idea of what should be. Even now that I am in a wheel chair I still do things that I know will cause me to get tired, but I refuse to let CIDP win on letting me be totally not needed.
I do hope that you finally get that if other people had this for one day that they would respect what you do and accomplish everyday. Be proud of yourself and hold your head high (even though we look at the floor when we walk) no matter what names are called in our heart we know that we are fighting and going to maintain our lives as best we can. Stay strong and always be you. Pam
Stacey, Dick is so right on with his post. I used to be all over the place before this CIDP attacked. I used to have OCD really bad, I have two children to raise, I had meals to cook, plus was a secretary and a girl friday for my husbands business, I used to drive a thousand miles each week. I started walking with a cane within 2 years after diagnosis, but still pushed on and went to bed late a night (11pm). Then about 3 years ago I had to start using a walker but still did everything for the house, family and volunteered. Now since last year I am wheelchair bound, can’t do the house cleaning, can’t drive, can’t even clean myself by myself, have to sleep 4 hours during the day because of fatigue, about once a month I get to cook the meals for everyone (and then the next day I am exhausted). So when you feel exhausted rest, when you need help ask, when you need anything that you think you can do but your body says no please ask. Asking is hard and I also still have problems with this myself. My husband and children have come to turns with what is going on, but I am stubborn and determined to keep doing what I can. I have to sweep the floors at least once a month and my husband and children just know that I need to be needed. And personally I think that is the hardest thing with this disorder is to lose the feeling of being needed because everything becomes a chore and harder to do. In November of this year I will be a CIDP person of 12 years.
Just be strong mentally for yourself and have your family read up on this disorder. It is hard in so many ways but with your family love and support and help you can get through this.
Many blessings and hugs to you
Hi Stacey! Well at least you see we all kind of have the same problems or simular. You have to take care of you so you can do the things you want to do with Conner! But I see a fighter with alot of Will Power and Determination. That goes along ways when a person has that. The summer time for me is also relaxing being in the pool. And I eat garden fresh vegetables and that too helps me feel better! Take each day one day at a time. What you can do then do what you can. What you can’t do then don’t try doing it. And listen to what your body tells you that day! Hugs
Yes–you DO need to find a new neuro.
Unfortunately, it is not supposed to happen, and the doctors are supposed to have good ethics…but it doesn’t always happen that way.
You went for a second opinion, since you are dealing with a rare disease.
It is obvious, your neuro has a “bad chip on his shoulder” now.
I have a WONDERFUL primary care doctor. Perhaps you can explain to your primary care doc what’s coming down, and if he/she can suggest a new good neuro?
I now have a WONDERFUL neuro now…but I went through four others that I did not like, until I got this one. And it turns out that he is head of Neurology at the local Medical Center, (that I did not know before going to him). He is a neuro-muscular specialist, with 4 other CIDP patients, though I am his worst.
Perhaps you can check up on local hospital “Head of Neurology” doctors–they would or might have more experience dealing with rare neuro diseases.
And when you do go to see the new doctor–explain to him you had gone for a second opinion, and that the first doctor got a bad attitude over that.
You definitely have to keep after this. The more it goes on, the more damage there is. Don’t end up like I am. (It is just unfortunate that the normal protocols to fight CIDP didn’t work for me, but at least my doctors HAVE TRIED THEIR BEST!) Your doctor is NOT trying his best…
Hi Stacey! I truely feel your pain. Your feelings are what I have experienced many times with my disease. And I am like you! Walking means so much to me and it’s very frustrating when you feel like nobody is listeniing expecially your doctors.
I wanted to cry when I read your post. For I have seen the same thing too at times and it got very scary. I am so glad Obama signed the Bill for Stem Cell Research. Like it may do me any good but I am praying that we all see some good come out of it and see a chance at a better life.
I hope you get lucky and are anle to find another doctor that will help you out! None of us diserve this pain we have everyday! Good people with kind hearts and it alway’s seems the good ones end up catching the strange diseases that can’t be cured! Prayers heading your way! Hugs
Hi Stacey! The Home Health Case Worker came out this morning and gave me a 1-800 number to call to Medicare. She told me that technically by law they should have kept my mom admitted in the hospital until she was well enough to be released. So I found out something new that might help others in here if they ever have the same problems.
Medicare agreed to pay the Hospital a certain amount of money for my mom’s surgery. Then the Renal Failure they agreed to pay more. The first sign she started showing her kidney’s were waking back up, the hospital then could not keep her because defining nausea and vomiting is something that is hard to explain to Medicare. By Law the hospital should have kept her until she was more stable. But then it comes out of the profits they made from her while being in there for surgery. Meaning they don’t make as much money off that patient if they are stuck having to keep them longer. They had no diagnoses to give Medicare for her nausea and vomiting except her creatinine levels were still high. But her kidney’s had started waking up. So in order to save their profits they discharged my mother to the rehab knowing she would not pass that either throwing her into a loophole situation.
Now all I have to do is call the 1-800 number and report what the hospital did and Medicare will fine them for releasing a patient too soon. They are not supposed to do that but many hospitals are now doing it and many get fined because of it. It’s only a slap on the wrist but does let the hospital know Medicare is aware of them releasing patients to early and possibly causing life threatening situations and also they are aware that the hospital could be a problem at a future date with other patients. And if they get too many complaints they shut that facility down for Medical Neglect and Medicare will not pay them for any services rendered. I never knew that until that lady came in today. When me and my mother told her what happened it shocked that nurse and she then came out and told me what she knew law wise with Medicare and the hospitals. So if any of you get into a problem like this with your parent or loved one, file a greviance with the hospital and Medicare.
Me! I am calling them tomorrow and letting them have it! Well better get offline. Been busy running all day long! Exhausted and my day is only half way there. Hugs
Hi Stacey! Ohh how I am so happy for you that you got on the IVIG’s. And I am glad that it’s starting to work and make you feel better. Will continue to pray that you keep improving so you can make that trip to Myrtle Beach and actually get a good swim going on! 😀
Sounds like 2009 is going to be a much better year for you. And I hope your house sells fast and easy. The market is being a stinker right now. But you never know. Somebody might be looking for a home in that area and it might be yours! Good luck Stacey! Glad things are finally looking up! Hugs
Hi Stacey! Hope you are much better today and well rested. A little late for wishing you a Merry Christmas but am glad you got better and had a nice Holiday. Many more to come! It’s always fun watching our children at Christmas. They give us light and joy to our lives! Hugs
Hi Stacey! That was me with the frying pan pain! LOL! I burned so bad that I was jumping in a bath tub with cold water. Nothing I took helped it! I am just starting to come out of the attack but I know that exact pain! Very hard to describe but what you said is the same feeling. A totally horrible experience.
Get your neuro to check your vitamin D levels.
This is strange, but 6 weeks ago I started taking an RX of Vitamin D 5000IU’s a week. My levels are still low but within normal limits now. And I have been taking One a Day Multivitamins for women. I am starting to feel so much better. My energy levels are getting better.
Only one setback this past week was my Rituxan treatment. Yuk yuk! LOL! I had to double up on Neurontin and still need more but am tolerating the dose I am on. Taking Ambien also at bedtime.
You sound like me! When go into town I get my business done and over with in one day! LOL! Then I am bedridden for about a week from overpushing!
That burning pain is so painful that it’s hard to describe.
Tomorrow I had to go into the hospital again for a second treatment. I thought I was only getting one a month and found out today that I go in for second dose. 4 week of that nasty Rituxan and then every month or 6 weeks. Hope you feel better soon!
Really though! Try those vitamins. They are helping me alot. Got more energy!
Hi Stacey! Hmm! That is what happened to me after I had my spine surgery. My whole body burned like fire. And the fatique was terrible. Sounds like your CIDP is acting up and I would call your Neuro on Monday and see about getting seen.
Know that hands in a frying pan feeling. It does hurt! Lost many nights of sleep in the summer dealing with it! Strange huh? Here we both had back problems and then get CIDP!
The past couple of days for me my left leg is now having that rubber band feeling and the knee keeps buckling out on me. I think my surgery on my spine actually ended up being a failure because of this attack on my nervous system. But won’t have surgery again on my spine. No way! Hope you feel better soon! Hugs
Hi Stacey! Well this guy seems to be a very caring person and might actually help you out in getting your strength built back up. You are like me! I am supposed to wear a back brace for at least 6 more months and I hate wearing it. Plus after my surgery they gave me a walker and I hate using that too. Then they gave me a cane. I do use that but hate having too! So I know how you feel there. It is very easy to get into denial! I too have also seen myself in denial not wanting to face what is in front of me.
All I want is to be healthy and free of illness! And I am pretty sure we all in here feel the same way.
Wishing you alot of good luck for 2009! Will pray that you get alot better and that you no longer have to see those AFO’s!
Happy Thanksgiving my friend! Eat Drink and Be Merry!
Hi Stacey! Maybe it won’t be too much longer before things end with the estate and you finally get some peace and quiet. Sounds like your day though was an enjoyable one that gave you some relaxing time for yourself. And we all need to get that every now and then.
Hope it made you feel better. As far as the sister goes! Just ignore her! She’s only trying to stir up problems anyway and the best thing is to just ignore whatever she says.
Have a good night Stacey! Hugs
Hi Stacey! That is weird how we all three had the shot in our backs and noticed a change. I’m going to try and look this up some. See if there’s been any strange complications that we just don’t know about. My Epidural was about 2 years ago too. My back was hurting me so bad. I did not really notice how bad my walking was until my mom landed in the hospital and walking those long hallways.
I had my family walking down the hallway talking to each other and they noticed I was not with them. They turned around and saw me struggling to catch up with them.
I think I should have gone back to the hospital after that injection. They released me right after that injection about 30 minutes after it was done. I got home 15 minutes later and was walking okay. Then my whole body went numb! My head felt tingly, my neck felt weird, my arms and legs got all numb feeling. I flopped on the couch and started praying.
Before my back surgery was done they did an EMG/NCV on me! There was Demylenating Sensory/Motor Nerve Damage in that test! Eight muscles were also damaged in my legs. Having that surgery made it worse too!
This is terrible to say this, but I had a nerve biopsy back in 1991 I think that’s when it was and right after that I had a nervous system attack. And then the Epiderul Injection caused an attack and then the spine surgery caused an attack. Seems like anything to do with nerves or nerve repair or messing with the mylen sheath on me is dangerous.
So I’m kind of scared in that factor of having any kind of surgery that has to deal with major nerves or nerve repair! Or messing with my spine now!
I had a hysterectomy and no problems. Thyroidectomy and so far no problems. C-Section and no problems! But that spine for some reason and nerve biopsy brought whatever it is out of the woodwork and made me sick as a dog. I’m still hoping this thyroid was my issue here! At least in my hands I think it was, but my legs are still messed up. I don’t know if I will get like I was 2 years ago with my legs getting better! Alot of damage has been done. The car accident didn’t help matters either. They won’t never mess with any nerves or mess with my spine anymore!
Just weird about that spine and needles. Hmmm! I’m going to check further into that one!
I think the most horrible time I had when raising my children was the fear of not being able to attend their graduations and weddings. But somehow, some way it became possible! My children used to bring all their friends to my house! I noticed it alot when I felt bad. So they would invite their friends over to my house. I was never lonely!
Even had a few runaway’s come to my house. I would call their parents and let them know they were over at my house and they stayed a few days with me. But I managed talking them into going back home!
Never thought I would see the day of becoming a grandmother and somehow I did!
Hi Stacey! I will say special prayers for you today and Emma I hope you are feeling better! Jamie too! I pray that everyone in here gets their prayers answered in some way shape or form.
And I pray for all that are suffering, whether is be financial, homeless or healthcare that somehow we see good answers for us!
Stacey! I can relate about the sister! There is always one in the family! You take up for your husband and you and quit worrying about those sister’s acting up. You think about you and your family.
They will evetually get over this! But no matter what you do, you stick to your grounds. Don’t let them intimadate you! They are trying to see how far they can push you! Let get them angry and you just stand your ground. Once the estate matters get finished. I would not even bother with them anymore! When they see you have backed away from them, they will come around. I know this hurts you too! Family can be very hurtful when someone passes away! It’s like the backbone that kept the family together is now gone and you will never see that again! My father was the backbone in my family. He is what kept us close and what made my family so much fun. After his passing, I saw evil in my sisters that I never saw before! I also saw how neither of them cared for my mom! My mother has disabilities and needs help with alot of things and does not drive. One of my sister right after my fathers funeral left the funeral and took her vacation and left for the beach and my other sister she left and went home and did not call or nothing leaving me with my mother all alone crying on my shoulders a whole week. In fact they would call my mom and see how she was doing but did not come around her all summer long. They didn’t want being stuck caring for her and left me holding the bag! Both live in NC and I was living in PA then! I had to uproot my family and make a move here in NC just so I would see my mom being cared after! They literally left me the whole summer and I was stuck here was just a suitcase of funeral clothes and barely any clothing. The whole summer! I had to make trips up North and bring things down that took 5 trips. My husband had to put in for a job transfer and that had to go through before he could come down here. We had to sell our house up North and rented here first because the house stayed on the market almost a year. And I had two very selfish sisters that thought only of themselves. We didn’t speak for a while! It was ugly! But when they needed help they sure came running to my mom! One of my sisters has a mess! Total mess! Her daughter is giving her a fit! Very personal family problem. But my husband and I both have had to help her out with a certain situation. Like I said, they will come around later on!
My prayers go out to you and your family! Good luck Stacey! Cyber hugs!
Hi Stacey! I will keep you in my prayers during this tragic time in your life. I have seen this happen in my family too and I think it happens in all families. Instead of letting someone handle the estate in a proper way they have to give that person a hard time. I would just completely ignore her demands and let her know the Will is legal and what’s been done has been done by your mother’s wishes and to let it go. Believe me she will pout for a while and be ignorant to you for a while, but then she will come around. But you have my prayers and I do hope things get better where you can get things final and have your life again without having a sister causing you problems. One day she’s going to end up needing you and maybe then she will come around. Let us know how things go! Cyber Hugs heading your way!
Hi Stacey! I too am getting the arm problems but mint actually burn like fire. The carpul tunnel nerve is acting up in both arms. I have to type with one hand now because this problem started a while back ago. And I am left handed. The one arm that is causing me more problems that the right.
I’m like you! From the knees down, no feeling and from the hands up to the shoulders I have that feeling.
The nerve damage is even in my behind area. Everytime I get a needle in the fanny for something, I don’t even feel the needle going in. I’m eat up with this mess. Just not getting treated yet until they find out the cause, if…. they ever do. Hope the IVIG works for you. I am praying they start me on it! And soon!