Hello Dawn, It has been quite a while since i have been on the forums. I got on today to see how you and Kevin are doing. It sounds like you are still fighting. Im sorry about the news. You and Kevin sure deserve a break for as much as you do to help everyone who comes to this site! It has been almost a year now since Brayden started showing symptoms…I cant believe it! For the last few months he has been getting 40g ivig every 3 wks. His neuro told us at the last visit that we just need to get used to the idea of Brayden having this… and you know i thought of you because i believe you feel the same way i do which is, i dont want to just sit back and tell my 9 yr old son “well you just have to get used to this because this is how it is going to be”. Thank you for inspiring the FIGHT!! Hang in there.
Hi Dawn! Maybe God let you loose the ring now because somebody else needs to find the ring to give them HOPE! And he feels that you won’t be needing it anymore! Lets think of this in a positive way instead of a jinx! That way it will make you feel better and not be worrying about a jinx! LOL! I know! I would feel the same way! When my father got sick 7 years ago before he died my mother gave him a haircut the last week before he died. She gave me the plastic tray with his hair in the tray and told me to take it outside and go dump the hair in the field for the birds to get!
I remember going out the door with the tray and something hit me so very hard. It dawned on me that his hair might be the only thing left of my father to touch after he dies! I started balling like a baby in the garage and could not throw his hair away. I snuck back into the house and grabbed a zip lock bag and placed his hair in that bag. Placed it in my purse and kept it there until later in the year. After he died I had something that nobody else had. My father’s hair! And I felt like his spirit was with me and watching over me everywhere I went. The next year after he died, I went and bought Lockets and in each Locket I placed some of his hair in the locket and gave them as Christmas presents to each grandchild and my mom and sister. I keep the locket in my purse and when I need it I take it out as a good luck Charm and Security. That locket with my fathers hair has been my good luck Charm, I need my Dad Charm and my Charm of Hope! If I were to lose it, I just don’t know what I would do. So I would have to think that somebody needed an Angel in Heaven and they chose my father to watch over them giving them the same comfort I needed! Lets pray that ring went to a good cause! Hugs
Hi Dawn! I am so so happy to hear your news about Kevie! You sure have had a rough road and I can only imagine the prayers you have said many times over. I have never prayed cutting the grass saying the Hail Mary’s but kept a picture of the Virgin Mary across my bed post and many nights I sat and looked at the Virgin Mary and prayed over and over again to be healed!
Even had events where I felt so bad taking my bad and prayed in the tub. Well I must say the day you cut that grass, it got blessed many times over. But I know what you are going through and it’s got to be one of the hardest things a parent could experience. Alot of worries too and alot of concerns.
Will keep Kevie in my prayers too and will say those Hail Mary’s also! Hugs
Hi Dawn! Thanks for your advice. I have one major problem I will need to tell my doctor. When I start to get a headache, mine get aweful! They start out mild and within a half hour they go into massive migraines. Aleve and Tylenol are like taking candy for me. That is what I tried telling the nurse yesterday.
With me having Lupus over the years. Typical over the counter meds like Aleve and Tylenol don’t work on my headaches. With not even taking chemo. A typical headache when I get them I take 800 mgs Ibuprophen, 10 mgs of prednisone, a gabapentin and then if that does not stop it and I see it getting worse I end up having to take a tylenol 3 with codiene.
When I get a headache, they go into massive migraines that cause vomiting. I have seen me go for 3 days straight having these migraines and when I get them, I have to dope myself up. LOL! That is the only way to stop those suckers.
The nurse didn’t realize how bad I would get but I told her in advance. She thought a regular tylenol would do the trick but saw different with me.
This morning is a little better. Not as doofy feeling. Got up this morning and took my meds right away! LOL!
I think the worst of this first dose is finally starting to ease up some. Still feel icky but not like the other day and yesterday. So it’s starting to ease a bit. Not much but better than yesterday.. Whew!
Hi Dawn! Will say those prayers that Emma does okay! Poor Emma! She’s so young and shouldn’t have to go through all this including Kevie but even children can get sick. But I seeing a child sick! I will be saying prayers for everybody today! Think so many of us need that today! Hugs
Hi Dawn! I will be praying really hard tonight for Kevie! Bless his heart! He sure has had a challenging time and yet is such a cheerful child trying to fight this nasty disease! Will think of him tonight in my sleep and say dream prayers in hopes Kevie wakes up tomorrow feeling 100 percent better! Hugs!
Hi Dawn! Well that is great news to see you feeling better. Me too! Not over pushing myself either. Taking one day at a time one step at a time. I have been on that nasty prednisone since 1993 and hate the side affects it can give you. Especially when on high doses. Seen many high doses and getting that moon face drove me nuts and also the beer gut look! I always look like I am 7 months pregnant when I get on those high doses. Right now I got myself down to 6 mgs today! The lowest I have been in quite a long time. Hope I can go lower but will need a ACTH test next week before we go any lower. Due to me being on the drug too long.
But I am glad you are doing better and hope you continue to improve! Get well soon and take care of yourself! You had me worried about you! But glad you are doing better! Hugs
Hi Dawn! Glad too see you feeling a little better! That high dose of steroid can be a problem if your not used to doses that high. I too am hypersensitive to drugs. Get’s you kind of scared trying them out when you get a new RX. I learned a new trick though. Instead of taking the whole pill, I split them in 4 ways and take a 1/4 of the pill instead of the whole pill. Let my body get adjusted to it and then add to what I can tolerate. Capsules though you can’t do and any drugs that have extended relief on them you can’t do either so I refuse alot of them because of my fear of taking new drugs.
I am scared to death being in the hospital at times especially when they give me something new! Ohh I fear the new drugs!
But I am glad you are back and doing a little better!
Hi Dawn! Glad to see you back! I was going to ask in a posting today if you were okay or if anybody heard from you. I know that was really scary! Been there and it’s no fun!
I have a friend of mine with MS. They had to give her pulse steroids and when they did she had major problems. Not good with MS either for back then that is what they used.
The first time they placed me on Pulse Steroids, I was sick as a dog, but they gave me those high doses and the moment they started that IV, I sailed out of bed and remember saying “I feel better already” It felt good at first when the dose went into my body but I was on Pulse. Then I got all shaky and nervous and couldn’t even keep my hand still! I had the shakes so bad and my teeth chattered! LOL!
I felt like coming off that bed and saying WOO HOO! Whew! It was something. Coming down off that high of a dose too was horrible. Totally horrible! I got so weak and could not go! That weaning process was not fun.
It’s a good drug for some and saves many lives for it sure saved mine. But then it can be for others not a good drug of choice.
Anyway! I am glad to see you back and will keep you in my prayers that you get well soon! Cyber hugs heading your way!
Hi Dawn! I know you are glad to see some things turning around for Kevie! I know you have had a long two years and some rough times. Not to mention the worry you have been through. I wished my best dear and hope your child gets well and never see’s this stuff ever again! I will keep him in my prayers and thoughts!
Hi Dawn! Do you not have any family members at all to help you? Oh boy would that scare me also. Certainly not being fun being sick and having to do for yourself with no help or support of any kind. These doctor bills are something else aren’t they? And it’s hard finding a good doctor that treats this stuff. Unless you travel where there is one that deals with this problem. I feel for you right now! Really do! A good friend of mine that has Lupus and much worse than I had to actually uproot themselves and moved to Maryland so they could get treated with their Lupus. If my mother didn’t need me around for she lives alone and has disabilities and is being cared for by me and my husband. My husband seems to get the brunt end of the deal caring for us both more than I am able to do. I am grateful to have him around. But it’s not easy on him and I hate having to put everything on him. If my mother was not around, I would be moving closer to an area like John Hopkins also! I would rather see those better doctor’s anyday than to see the ones in my town. I did get lucky and found 1 good one and he listened to me. Thank goodness he listened to me also! But I feel for you! I know this is not easy on you at all. Worrying about the bills and your roof over your head too! We have so many caring people in this world but then we have such a non caring world. I’m sitting here watching the TV and seeing families living in tents right now trying to survive because they lost their jobs or house got foreclosed on. Too much evil in this world! And yet our society see’s this happening and the Mayor in that town built tent city! I don’t want to talk about what my govenor did! He too just placed an area in Wake County and made it tent city for homeless people. Showed on the news a pregnant woman. She was renting a place and the owner foreclosed and they kicked her out of her home. She was due anyday and staying at that camp! And my governor just went out and purchased Grandfather mountain for 13 billion dollars! He took our tax dollars and bought a mountain. This just happened a few days ago~ He has had quite a few emails over that! They can take our tax dollars and buy a Mountain but can’t provide help for these families that need help! I don’t get it! 13 Billion for a Mountain and then get on TV and say we are broke! I wish you my best Dawn! Pleasure meeting you in here!
Hi Dawn! So sorry to hear that Kevie had a bad time with his treatment this time around. I hope and pray that his next treatment is a much better one and see him not feeling bad because of it.
I remember as a child us having a flooding rain and there was a ditch close by and a whole bunch of us coming home from school that day decided to go swimming in the ditch. 😀 We got in there and had alot of fun. Never realizing the danger back then.
Got home soaking wet and my mom asked me where I had been to get so wet! Told her we went swimming. I was only 6 years old. Come to find out we all went swimming in the sewer ditch~ 😀 Yuk yuk~
Hi Dawn! There are several different kinds of CIDP. They know I have Systemic Lupus, but along with the Lupus, I developed a B-12 Intrinsic Factor, have Osteosporsis, and COPD in a mild form, Asthma and Spinal Stenosis caused from a car accident. The car accident triggered the CIDP. My Lupus labs are not showing much activity but the skin biopsy is showing inflammation. There are two rare things with Lupus that can cause CIDP and one is Vasculitis. A necrotizing vasculitis. I have a positive LDH showing tissue damage and also a positive IGMg, QN Serum. Also I am showing a GFR factor of 50. So I am being a diagnostic challenge. Also have seen some non caring doctors that did nothing for treatment. One of those doctors told me I no longer had lupus and after I did a skin biopsy it showed I still had lupus.
Because of me having so many problems and labs that are doing opposite of what lupus normally causes, they want the biopsy to see if Lupus is the cause or something else. If it is small vessel vasculitis going on then treatment would be IVG’s. If not then they may have to treat this differently. Lupus can also cause a disease called Amyloidosis. They want to rule out some factors first before treatment because of my labs.
If I would have been at John Hopkins or University of PA Hospital I would have probably gotten treatment. Two doctors here in my town did a poor job with me and instead of sending me to Duke they ignored me saying I had a B-12 problem that caused the nerve damage. Since then I have shown them that this is not B-12 causing the CIDP.
The last neurologist that tested me saw a really bad neuropathy. He said it was CIDP but of an unknown etology. Claiming that my lupus might not even be the cause but then it might. So they want the nerve biopsy to rule out anything else before treating me. Even cancer! I don’t think it is cancer but I don’t know.
For years they said Lupus with possible MS. So they were looking for MS. We now know it’s not MS. I have been a weird one to diagnose. The worst part is that they have been treating me for Lupus all these years giving me Prednisone and other drugs. But the nerve damage keeps progressing.
They are sending me to the MDA/ALS Clinic at Duke now and I hope they can figure out my problem. I continue to get sicker and sicker and no help for it.
Something these two other doctors should have done from day one.
What makes me mad was seeing those two doctors in my town and they did nothing. Kept claiming my lupus was gone and the nerve damage was from the B-12. But then when I had the attack on my nervous system, they then got stumpped. I personally don’t even know if they knew what CIDP was.
I switched to another doctor and he started testing me all over again. We found lupus and some positive labs and my EMG was horrible. So he is now working on getting me straightened out. Those other two doctors were lousy doctors.
I even had one of them tell me that Lupus was seen in more blacks than whites and it’s rare for a white person to get lupus. And I have met several whites with Lupus. Go figure that one out! LOL!
Just looking foward to seeing a final chapter to this and hope it ends with a good ending! 😉