Energy filled with courage, love and prayers is requested!

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Permalink Reply by Adria on September 22, 2008 at 2:17am

Hi Betsy,
Boy, I soooo identify with how you feel. I also have had that reaction from people who I was close to, considered friends. MS tends to provide a lot of unusual symptoms that require emergency room visits, not to mention the medications also result in unusual symptoms requiring ER. At first the friends were supportive, there, etc. Me, I definitely know I pushed them away because I was 'Independent' and didn't want people hovering. I also didn't want to overburdon them.
So, I did a lot of those ER visits and doctors appts alone. Then I began to see how helpful people were trying to be, and I accepted their support and help. This lasted a couple of months. And then I think (not sure) but I think that friends really expected this to be over. I told them that this is "incurable", meaning that there is no long term solution at this point to stopping the symptoms, and as it was my first year dealing with the disease, many of these were so new to me.
Doctors were frustrated as well, because they hear MS and they have an immediate negative reaction because they don't like dealing with incurable diseases, because it presents them with something they cannot figure out or control. That is very "challenging" for their egos.
So, after about 9 mos with this disease, I had people start acting weird. I could feel it too. I understand that sort of "sense" you get about people. I have a radar for people who are not comfortable with me because of my disease. I pick it up in a minute.
I've had people I was close to tell me that my disease made them too sad because I'm young and they cannot handle thinking of me having this challenge, much less hearing about it. I have had people try to tell me very odd things, like that this may somehow go away magically. I have had people minimize my distress, complain about its effect on them, and tell me that it's amazing how many bad things happen to me.
All of these are said by people who, I believe, love me. However, they react oddly with this disease stuff. I've found its very few and far between people of our age who can really handle this shit. Stick close to them!
What you are describing causes so much pain. You're scared, trying to figure out the solution to whatever is physically wrong, but you have no support from friends because they are maybe 10 times as scared or whatever...and the doctors are stumped and acting unhelpful. So, you really feel out on a limb.
Here's what I do:
I lay in bed and pretend that Jesus (In my case b/c I'm Christian) is holding me in His arms. Don't want to Freak you out with the Jesus reference, but just replace it if you need to with any stronger power in life that you feel can protect you and hold you safe. Just imaging that person or being is holding you close in their arms and covering you with their love.
It has helped me on many nights.
all the best to you....If I was in Texas, I'd go to your doctor's appt with you, and I NEVER would have complained about being in the ER. I'd consider it a priviledge...because we both know that we consider very carefully who we want to go to the ER with us....so that is a very special person who should consider themselves lucky to be such a close friend!
Sleep well-
Adria

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Permalink Reply by Bren from Rivendell on September 22, 2008 at 3:40am

My dear Betsy, my heart is going out to you right now. This is so difficult to hear. I wish I could be there with you. I too relate to the pushing people away thing. People wanted me better and I didn't "get better". I withdrew and basically found out who my real friends were and made new ones. Unfortunately, it is par for the course I think you will hear over and over again.

It sounds like it could be seizure activity to me. I have epilepsy and am an advocate for new patients. Seizures can occur with many neuro-disorders, so proper diagnoses is crucial. In a post-ictal state you can be aware of your surroundings but are unable to respond. The numbness and other symptoms can be a form of an aura, a warning..have you had a complete neurological workup including an in-patient EEG? Unless they catch seizure activity while it is happening it is possible for your ER tests to be normal. Depending on the portion of the brain affected, your symptoms or post-ictal (after seizure symptoms) can last for hours or even days. Thus the feeling of being "crazy", frightened or angry when in fact it is physical.

I would hope that you could find a specialist in neurology to work you up and test you thoroughly. It is difficult for others to understand what it is like to experience the effects of any chronic illness. I have started a group for seizure and neuro patients...though no one has joined me yet, I will be willing to talk with you and support you if you need someone to talk with and vent with.. IF THE GROUP GOES TO SEXY CRAZY SPASTIC SEIZURES, there are first aid videos that are critical to folks experiencing seizures, both during and after the event. I would love for everyone to learn what to do, there are so many myths surrounding them.

You are not alone...and you are loved...Bren

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Permalink Reply by Military Mama on September 22, 2008 at 7:46am

Betsy,

Understanding completely what you are going through, I wish there was some way I could possibly be of some help to you. Please know that I am here for you spiritually, emotionally......I send you courage, love and support.

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Permalink Reply by Vicki C on September 22, 2008 at 8:15am

I'm praying for you, and wrapping you in a big, gentle internet hug. You are never alone, sweetie. We're all here..
Vicki C

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Permalink Reply by Sandra on September 22, 2008 at 10:28am

Betsy, You are in my thoughts and prayers and I send you an energetic blanket of love, courage and strength. Don't give up - there is a reason and a diagnosis - there is a doctor out there who can help you - believe it!
you are loved and supported!

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Permalink Reply by Vivian on September 22, 2008 at 11:01am

Betsy,
So sorry to read what you are going thru. People are a funny breed. I have found the same with us. Some of my friends (whom I thought would be at my side thru thick and thin) have made a few calls and that's it. Others who were new friends or casual friends have been my biggest supporters. It hurts indeed. This is a great community and even tho physically I can't be there to help you thru this, I'm hear to listen and encourage. Sending love,healing vibes and prayers your way. xo Viv

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Permalink Reply by Lanae on September 22, 2008 at 11:30am

Betsy
I am so sad that you are having to go through all this and with so little and inadequate support! Know you are loved and supported here. Sending positive vibes and prayers.

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Permalink Reply by Callie on September 22, 2008 at 5:04pm

HOney Bean, Where are you and can you call me.. or send me a mail and I will call you.. I think I can help... and there will be no frustration ever given. If you are up to it.. email my page and then lets have a talk... I think I might be able to send you some info on what just might be wrong too. I am sending you love and light and tons of healing hugs.. I wish I could gather you up in my arms and hug you silly.. much love I will be waiting for the mail. If I call you you will get me.. if not.. heavens knows.. this is the damnest thing this phone situation. the more basicmissions grows the less control I have over the phones and right now it is a mess.. yesterday I clocked on the caller id.. 423 calls .. and it rang maybe three times.. but when I pick it up to call out someone is there.. the system is just overwhelmed.. so I will call you. love ya callie

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Permalink Reply by Austin from Earth! on September 22, 2008 at 6:41pm

Betsy my dear, you've been in my heart and prayers since we first met. I continue to hold you there. You have a friend in GA! My regret is that I cannot be there with you to help you however possible. Did I give you my phone number once upon a time? I think I did... if not let me know. You can call to talk or text... whatever. *big hugs sweetie*

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Permalink Reply by Debbie on September 22, 2008 at 6:47pm

Bets, I am praying for you.. are there any relatives you can move in with? You need Major Support right now of the physical, loving sort. Might be worth it to tuck your tail and ask for help from a family member.. just my two cents.. I am sure you have lots more info than I do on your sitch.
love and prayers
deb

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Permalink Reply by Archimedes on September 22, 2008 at 7:22pm

I have no family here, the closest is a 15 hour drive. I have been hoping to move there soon, but I am not capable of that journey nor have they been able to get time off work to help.
It is seriously one big tug of war! I am willing to go anywhere where there is family at this point, and I know that they are all willing to rearrange their schedules and do what they can. Yet, if I am to up and leave today I will loose my job and there goes my medical insurance. My job will transfer me, however I have to be fit for duty first. I am torn. How long do I wait it out?

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Permalink Reply by Leslie on September 22, 2008 at 11:17pm

Ohhh Betsy, I am So SORRY YOU ARE GOING THROUGH ALL OF THIS & WITH NO EMOTIONAL OR PHYSICAL SUPPORT........ HUGS.......

I can empathize what you are going through... I have very few friends @ this point in my life, partially MY DOING as I have "0" tolerance for B.S. and for Fake people who make you feel like you OWE THEM YOUR SOUL for lending a helping hand, an ear or anything for that matter.. I have had to let ALOT OF PEOPLE GO IN MY LIFE as painful as it was and continues to be...The hardest was family... They actually were Never REally t here for me nor a support system anyway... But in my "Fantasy, Make Believe Land" they were... It was really Only over the past 10 years or so that I realized HOW MUCH THEY WERE NOT THERE... Sad thing is, is that I still continue (from time to time) to go back there expecting that somethine/one may have changed that I will FINALLY GET THE SUPPORT, but as my therapist always says "Did you get your daily dose of abuse today"... Sad But True... I being much older than you though have had to put this @ rest. It has got to be SO SO MUCH HARDER @ your age... I truly am sorry.. I too, wish I lived Physically closer to you as I would be there by your side, asking for NOTHING in return...

I agree with what another person has written and that is to move closer to family that can help... I understand how IMPORTANT INSURANCE is and HOW DIFFICULT IT IS TO COME BY... Does your employer/company have a Human Health Resource dept?/ If so, tell them your dilemma.. Also, is there a Social Service Dept. near you where you can speak to a representative/counsler and see about what your rights are and about temporary disability of some kind.??? Just some ideas to consider...

I do believe though that Callie so far, seems to have the "Best Possible Idea Yet".. Reach out to people here, on this website, You will get much needed support, support that you deserve, without anybody asking for anything in return...

Take Care..
xoxoxo Leslie

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