After demanding, in an assertive way, my insurance company send me a written response to my simple questions. I told them I was done calling them and from know on they were to call me. I did receive a call and was told my situation was now going to the “president’s so & so committee and believe me we take this serious”. I told him I was simply not impressed, because the time to ‘get serious’ was a long time ago and the ‘actions of the parties’ was all I had to go on. I asked if the ‘president’ actually attended the meetings he referred to and he said ‘Well …l he reads the report’. Knowing I wouldn’t get it, I asked for his name and address so I could jot him a serious little note. I emphasized, again it must be in writing and clearly address my concerns.
As a side note: I have done this before, not with my insurance company, but I did look up the name and phone number of the president of a large engineering company, and called his home on Sunday afternoon to inquire about the drawings his company promised me numerous times that were were yet received. He was actually pleasant, said he appreciated my call ~ and the next day I had my drawings. He even called me back to make sure I had what I needed.
So, the insurance company did in fact send me a letter in answer my three basic questions. Written in typical insurance style (noncommittal) it was about 75% OK. So, yesterday I had my IVIG ‘treat’ with the so-called re-branded no longer generic (Baxter) immunoglobulin (same stuff I always get) and now await the bill and see if what they told me and alluded to in their letter is fact.
It would not be fair of me not to acknowledge and thank the ‘front line’ clerks and many fancy-titled low-paid folks who really did try to help me. The problem was not ‘them’ but was truly a management issue and the solution belonged to management. Years ago I learned the power of a simple concept called assertiveness. It’s not a well understood process and easy to get off track and into anger ~ but it does really work.
I’m under no illusion that more problems with my insurance company lie ahead, and I will prevail.
Things have been going quite well, and I would say on this, our country’s bday, I’m feeling pretty good and independent.. I’m still taking these methylpred pills on fridays. I’m struggling with sleep, friday thru sunday, but otherwise o.k… I’m still not sure if its the pills/or the ivig that is working/helping me and probably won’t know until middle of July.. We are going to the Dells for camping/vacation, so will so how my body holds up! Hi Ron, I know what you mean by understanding what others are going thru.. I think this disease/disorder has taught me a great deal of the preciousness of good health, and meaning of life..Hi Kiwi Chick.. Yeah, I would say the inflammation has to be subsiding, and remylination is going on, as I have been getting quite a bit more active/stronger and a lot less fatiqued than only a few weeks ago.. I hope it lasts! Thanks Debs.. I agree with the experiment, and find out what works.. That’s pretty much been my case the last 8 months.. I think I’m finally on the right couse! I’ll keep you guys posted…. Take care everyone, and happy birthday USA!!! Be safe people! Deanop
Hello Dean Glad to read you are gaining on this. Im seeing little gains. Its been 4 days since taking a Vicodin, (usually 2 hours before bed), So I feel pretty good. I ran into a women who was in a power chair and asked her how that happened,for I saw she had droop foot.w(hich is what I have a slight case of). She was in a head on collision and was so thankfull how far she has come, We were both in tears by the end of our talk. I know one thing before I got this, I would never of takin the time to converse whith someone in a chair like that. This stuff has a way of changing you for the better.
Sorry to hear about your brother… I was in the hospital for 6 days back in nov. 2007 with gbs caused by flu or tetanus shot…It was the most painful of my life… I was wondering if he is complaining about back pain.. I remember it was excruciating, as well as terrible headaches, and very very painful, sensitive feet, (I kept my feet exposed)…I never had the plasma exchange but was very close,,,
It sucks to have this but, I would think anyone on this site will help, and the info packet this foundation has is good background…Someone mentioned Bowel movement, that was a biggy for me as well, and they finally gave me an some kind of inducer on day 4 or 5: I know swallowing was difficult, and I bit my tongue alot, and things tasted metallicy…I had a tough time filling out meal slips and opening meal containers, so make sure he gets help…
How old is he and how fast did it come on? That could be a good indicator how fast he recovers…Has the numbness tingling weakness run its course? Did they get it diagnosed correctly quickly?
Again, I’m sorry to hear about his dilemma…I’m here to tell you my story, just to give you an idea that I was about as bad as you brother, and now it is 5 months later, and I have slight numbness in fingers/toes.. Yesterday, I jogged on the treadmill for a couple minutes for the first time…I went from wheelchair/walker/cane/walking/jogging…. I’ve had one mini relapse, that was treated with ivig that helped greatly…
We will keep your families in our prayers…deanop
Hi, just wanted to say I’m getting a lot better since another round of ivig. I had 5 days starting on or around feb 10th..I’ve been hesitant to post until I knew which way things were going for me…I’ve been tracking progress and probably have sort of plateau’d again…I’ll post again with more details in days / weeks to come with changes. Definately the ivig did the trick though..Thank you for replies..deano
Hello all. Just got back ferom florida, man was it nice and warm. I took my trailer from Michigan , drove down and stayed with my brother in Atlanta and from there to some freinds in apopka. Then went to Kennedy Space center.
I walked around the Aquariam in Atlanta and the space centerin Cape Canavarel. All my symptoms are gone exept for my feet. They get tired , stiff, and numb. About 20% of my feet are affected.I over did the first day driving from Mi. to Atlanta ,after that I learned to pace myself.Also my fingers tended to go numb while driving. I would just shake them and they would return to normal.In Atlanta I talked to my brothers neighbor who had Gbs at 34 years old 4 years ago.He said he was about one year after with no symptoms . That gave me some encouragement for my feet. Today I am going to call the wheel chair renter and have them pick it up.I am just waiting for my work to line a job up for me, They want to keep me in health care. A job is suppose to start in a few weeks in a hospital in Detroit. Until all the contracts are done and all the prosses are complete then I will be off and running. Cant wait because I havent work since last October.
take care all
Hi Jan, lots of people get discouraged but just the fact that your husband is making progress is a good thing. Even if its slow, its there.
My son Nate was not vented but his progress was about right in the same timeline with your husbands. He was not able to use his arms much early on but it came back gradually, then his legs followed later.
It will keep coming, don’t get discouraged.
Try to remember and remind him of how he was and how far he has come. It helps. He needs to be reminded that the progress will keep coming.
If they have him on enough meds like Neurontin, it should help his back pain.
Nate has lots of that still at 21mos and takes 2400 a day.
They also have him on Tramadol. It helps a lot with the pain and it does not make him dopey.
He will get better although it is slow, he will eventually.
Nate has a friend named Arnie and he and his girlfriend are getting married in October. Nate is supposed to be Arnie’s best man, my other son Ben is going to be an usher.
Arnie told Nate last year that he didn’t care if Nate could walk or not, he still wants him to be his best man. Arnie is a good guy.
Nate and I are pretty sure that he will be able to walk it with a walker but we’re not anticipating him being able to stand very long. Standing still is way harder than moving for some reason.
They will have his chair close by to scoot under him after a couple of minutes. That should work just fine.
Its a very good motivation for Nate to walk longer distances at PT. He has gone from not wanting to try to trying things that he’s not ready for.
Oh well, at least he is trying now and its working.
It does not seem like 20 1/2 mos has gone by. Wow
It’s been 14 months for me now, I’ve finally started walking into the rec center & other public places without a cane or walker. I still need to build more strength, but I’ve seen significant progress the last month or so – I’m walking up to a mile twice a week now, my work-outs (weights, cardio-bike, swimming) have really begun to increase in intensity…all the work I’ve put into rehabbing my body is begining to pay off. 🙂
What you have told us is called progress. It might not seem like much but just having her bp stabilize and her heart rate is good news.
Progress with GBS comes in very small steps. It doesn’t come in giant leaps but if it is coming even in small steps, its a good thing and it means a lot.
Neuro progress as far as paralysis goes is slow. Don’t expect anything too noticeable yet. Its still early for your mom.
The hardest thing to get used to is how slowly things get better, especially with your mom.
Keep a journal if you can about what she was like when she got sick, then write down each thing that happens, even is its small. After awhile you will have a large volume going. It helped Nate a lot for us to remind him of what he was like at first and how much better he is now. It gave him encouragement when he was really feeling down.
Also, talk to her docs about anti-depressants. They can help a lot with her moods and even her pain.
They put Nate on them right away. It has helped him immensely to get through all the months when he couldn’t do anything.