my husband

[Jena]

lately has been amazing. who knew ms could bring this out in him. he's been funny suppportive my little or rather "big" cheerleader.

each night he rubs my legs that burn and hurt, he holds down my legs when they spasms so badly i almost knock him out. He helps me when my vision goes wacky, makes my feet warm when their ice cold.

the list goes on and on the rock he's become for me. each night we sit and talk like we always did, yet its different now somehow. we can hear eachother suddenly when before there was this blockage the blockage is gone.

i think this is scarey what i have. im afraid yet doing my walk etc. and keeping my positive attitude. yet at night when i do break down he's there to hold me and be the husband i knew he could be.

anyway just wanted to share that. hes made an unbearable situation actually funny at times.... and bearable. i couldn't do this without him. truly.

i guess this could be one of the good's that come from what i have now.

 

[Hound dog]

Often we take for granted the ones we love and care the most about........and it can take something like this to snap us back to attention.

I'm so glad he's helping you through this and being your rock.

Have you started the medications yet?

Hugs

 

[hearts and roses]

I once asked my sister in law how she and her H overcame the early stuff in their marriage...aka, what saved their marriage and she turned to me and said, "Cancer". Well, that was sobering, huh?

I think very often it takes something dramatic and maybe even the possibility of losing all that you know and love...and it turns everything around. We suddenly realize how all the little stupid things that drive us crazy do not matter as much any more.

I'm glad your H is stepping up.

 

[Mattsmom277]

Supportive and helpful spouse can mean a huge difference when going through tough times. I know that without my S/O my spirits wouldn't be as good. It's often the things you never think would, that end up bringing people even closer. I'm always glad to hear of couples banding together.

 

[TerryJ2]

Wow.
What a change from 6 wks ago.
Bravo!

 

[Jena]

yea and it ain't the ssri! LOL

Lisa no not yet. it's complicated unfortunately as is most things in my life past year. we do not have insurance, yup we are trying and setting up appointment to meet with someone next week. soonest we could get. i started on a supplement regimen more strict than what i had before, a whole lotta b and added a bunch of diff foods to my diet to get me by until we can choose a medication.

the medications are rough all of the dmd's their called. each come with-their own nightmarish side effects. doctor wants more mri's with contrast to see which lesions are new and to try to find more. still wont' say if it's progressive or not. i've been in a flare up now since i met with him two weeks ago.

he bumped up all my appts they called yesterday and want me in on thursday. why I don't know the bomb already dropped lol. i have to admit though i am def going thru the phases. was super positive in beginning last night something else hit. i'm working thru that now. it's hard because alot of ppl don't know how to take it or what to say.

i just have to surround myself with positive people and the rest i can't cope with. sounds mean yet i'Tourette's Syndrome just what i know will work for me.

 

[Hound dog]

Jena

The process is the same as the one with grief. You'll find yourself going through all the stages in various order.

I hope you can get the insurance thing sorted out. (I know exactly what you're going through there) The family friend we have with MS thought at first the change in diet was silly.....until he tried it, really worked it......then decided it did help make him feel better.

 

[DammitJanet]

Jena, you are going to find out really quickly that if you have a chronic disease that you have already been diagnosed with before attempting to get insured for, you will be identified as uninsurable. I have been told over and over again that no one would touch me with a ten foot pole...or at least not for more money than would even be feasible. We are talking thousands and thousands of dollars a month, if that.

Honestly, and this may sound really weird or odd, because you have no biological kids together, I might consider getting a divorce and living together because then you would be eligible for medicaid. Perhaps even SSI. I dont know what your work history is so I dont know if you would be eligible for SSDI. Sometimes ya just gotta do what ya gotta do because of financial junk when you have chronic issues. It is one of the reasons I will never be married but I have lived with mine for almost 28 years.

 

[Jena]

i already ate well, this past year i've taken better care of my body than ever before. I knew i had to do to all the stress that hit our home with difficult child being so ill. Yet now i've incorporated a few more natural supplements, increased my omega 3's supposedly tha'Tourette's Syndrome huge and some says it can repair some damaged mylein sheath which is what my problem is all about.

Yet the doctor wants to put me on klonipin and i think i want to try a muscle relaxer out first, than if it doesnt' work do that. The pain at night some nights is well a bit challenging. Last night I wanted to rip my hair out it was so bad. husband and I have found that a drink right before bed helps the pain and also the leg spasms. I am not a drinker by the way.

Just one night he said babe let's just try to give you a drink. it calmed my symptoms and my body yet last night it was a no go.

 

[susiestar]

If you want to talk muscle relaxers, pm me. I was recently informed I have now taken ALL of them.

Janet's advice on things is worth considering, in my opinion. Or if his business is losing money or not making much you may qualify for medicaid. If you qualify your difficult child might also. depending on how much you have worked in the last ten years, apply for disability - chances are the doctor will say you cannot work because this. It would get medicaid for you and a small income for difficult child also to help support her. Do NOT wait too long. If you haven't earned a certain amount in the last ten years you don't qualify but if your income is low you may get SSI instead. The sooner you apply the better for disability.

I am glad husband is stepping up right now. Be sure to be extra supportive of him - it is scary for husband's too. My health really terrifies my husband even though he knew from the beginnign that it was bad.

 

[Jena]

hi

Janet i can see what you mean in a situation like this, yet we already figured out how we'll do it and should qualify. we aren't getting private it's new york health plus. we'll have to pay something yet not much. there is a nearby hospital that does it the first friday of each month so we'll go there with our application and a letter from the doctor stating my diagnosis and hopefully it'll happen quickly.

we'll c. susie yes i will thanks.

 

[DammitJanet]

damn wish I had lived in NY...we have nothing like that here. If you are over 19 and dont have kids and arent disabled, you are SOL. It doesnt matter how much money you make or dont make, you cannot get any health care or medicaid or help with insurance. Even when I was waiting for my disability to be approved, I couldnt get medicaid. I had to either pay for my doctor visits or get care through indigent care places.

 

[Jena]

new york does offer alot. we will wait though i am sure several mos for it. We pay cash for all my dr. appointments each time the only thing we lucked out for free was the mri.

so i'm really not in any great situation regarding insurance right now. so ny really isn't that diff. doctor's cutting price of doctor visits yet it still adds up ontop of difficult child's constant medications and needs.

that is why i'm taking a whole lotta vitamins to try to keep the disease at bay on my own before we figure out which medication is safest to try first. they all bite bigtime. side effects are horrible adn they cause more discomfort than the actual disease.

and no i'm not on any type of insurance right now until i get the real insurance. like i said cash all the way. it is what it is. i'm lucky he has a job and works, otherwise we'd be in trouble.

yet when the doctor is sitting there saying the medications are ridiculously expensive, you need insurance right away you can't touch them with a ten foot pole. my medications will run 4k a mos. on the disease modifying ones.

husband found a holistic dr. he wants me to try. ppl rave about him until i get the medications going. he's expensive 300 a visit. we'll c i'm doing fairly well on my own with the supplments and help of my friends at the natural food store. my vitamins are now up to 130 a month. lol

i'm on vitamin b12, vitamin d the highest on both without injection, fish oil purified omega 3, vitamin e, diosmin, magnesium, vitamin code vitamins, tumeric for swelling is great. and one more i can't remember. i eat disgusting salmon 3x a week now. ugh.

research shows that increase in b12, d, and omega 3's can help slow it down and protect the remaining neurel tissue that isnt' damaged yet from destruction by my own cells attacking it. i'm adding in yoga and meditation again as well. i walk almost everyday. pain or not i'm out there. being active is the best cure to any chronic pain situation they say

 

[DDD]

What a positive post, Jena. I'm so glad that you have a caring partner as you travel this new road.
DDD

PS: Lol, my wonderful caring husband drives me nuts when I'm under the weather. Would you believe he will wake me up to see if "I'm OK"? What a guy!

 

[CrazyinVA]

Jena, many drug manufacturers have programs for the uninsured... Youngest was able to get her seizure medications for free. You might want to ask your neurologist for the names of the drugs he wants you on and then look up the manufacturers websites. They have forms your doctor has to fill out to get the medications.. I'm surprised the doctor hasn't suggested that.

You're fortunate, however, to have such a supportive husband, and that you're financially able to pay for doctors visits for yourself and difficult child. I cannot imagine how you pay out of pocket and still be able to take a vacation... you must be a heck of a budgeter! I had insurance and still could never take a vacation when my kids were in and out of hospitals and on different medications... the copays killed me.

 

[DammitJanet]

Amen Crazy!

Yeah those pharmaceutical websites do help, they gave me the psychiatric drugs when I was uninsured for the years before I was approved for disability. I would have been in a real bad way without them. I could have never afforded the psychiatric medications and back then lamictal and topamax didnt come in generic and were prohibitively expensive. Even now if you look at my EOB's I spend thousands of dollars a month in RX's and thats with medication part D.

I do take vitamins...some...like the bs and Im on D3 now and I love fish...I wish I lived in the PNW so Tony could catch salmon...lol. I would eat that more cause its so expensive. Tony catches fish as often as I let him out of the house...or he hunts. We always have either salt water or fresh water fish in the freezer.

 

[Jena]

Janet you have to take purified omega 3's, than add in tumeric 3x a day for swelling and joint pain, than increase your b12's and b1's, start taking Diosmin it helps tremendously with circulation. i promise you witin 30 days you will feel better. I research than keep heading back to natural food store.

I'm now on diosmin, b12, b1, vitamin e, omega 3's, my multivitamin which is raw vegan, vitamin d, magnesium also helps with pain by the way and calming joint pain, and a few tohers i can't remember lol. my memory is so scarey. i was out in the heat today and couldn't finish a sentence.

I'm not a great budgeter at all. I have zero part in the finances and I HATE it. i have no clue whats in the checking, savings nada. he refuses to share this with me as far as paying bills. it's diff though he doesnt' geta weekly paycheck he pulls money out of the restaraunt when he can afford to.

i mean i won't lie he makes good money on a GOOD month. yet you have to realize 3k a mos goes to his ex wife. so if we're left with 5k a mos for bills we're lucky. how he'll pay off the vacation i have no clue he's still paying off the honeymoon.

he has throw a few hissy fits as of late i'm sad to say. let's all guess why?? bet it wont' take too long....... clues; me tired, fatigued

 

[Persephone]

So glad to hear that your guy is so supportive Jena, I know it makes a big difference. As far as the hissy fits... I think almost all guys do that over the same reason. My husband is usually a supportive guy but he unleashed a fit that would make my preschooler proud when I had some extensive dental work done, including the removal of 3 out of 4 wisdom teeth. I was in pain, not eating all that well because I couldn't eat much to begin with, and was on some really good pain medications. He just couldn't understand why my mood wasn't there when his was. I find it a little amusing now, but wasn't able to find the humor in it when it happened. *hugs and a cookie for you*
I understand the insurance woes, the cost of healthcare is staggering. I feel very fortunate that my boys are on WA state's ins program, not sure what I would do without it. My mom has had her fair share of health issues and at times has been unable to afford her medications, she was able to get samples from her doctor for free - could be another option you could look into.