So much for all the plans and hopes medically for me, update on DH and venting

itscc2u · #1 (**permalink**) 04-16-2008, 11:06 AM

Well anyone notice me not hanging around probably not. Although I know my DH has been hanging around here.

Anyhow my body betrayed me and I had no choice but to go on that rat poison Coumadin and give myself those painful Lovenox shots twice a day, and now the best laid plans have been shot all to haites.

No IVC filter for me at least not now.

My left leg betrayed me and got a blood clot, it has been hurting on and off for weeks and I had been back and forth for dopplers on it and even an x-ray which shows a healed fracture of a matatarsal (That no clue when or how I broke it) It got swollen so badly hurt so bad I wanted to cut my leg off, lo and behold a blood clot so the wonderful Dr's started me back on the blood thinners I refused to "save my life" and I guess now I am resigned to the fact that I can plan, get alternative ideas and they wont ever work for me. I am resigned to the fact that this is in my best interests for now until some other treatment comes along

I hated giving myself the twice daily shots in my belly but at least my blood thinner levels are where they need to be, I managed to work my PT job doing this believe it or not only worked 16 hours so not bad, but man I look like someone beat me in my belly bruised to high heaven.

I just am tired like I said in my other thread of feeling like a pin-cushion like someone is using me to experiment or run tests just to find something wrong and all.

But in good news I may have been mis-diagnosed with fibromyalgia, my B12 levels have tanked and I get those shots weekly and the pain I had that was fibro-like has diminished and I have energy I wont say how much because DH is lurking around these parts and I cant admit just how much better I do feel since getting the shots, I am afraid I might over-do it wth my new found energy and put myself into a lupus flare, but I am getting mroe done imo and thats good.

DH had his second epidural steroid injection yesterday and I am afraid to say I dont think he is doing better and that neck surgery is inevitable and he will be looking for a new job after surgery. After what his boss said to him yesterday when he went to pick up his last paycheck which wasnt there because he forgot to submit DH's hours and told DH he had to turn in his keys and cell phone and not drive the company truck ticked us off because DH hasnt been anywhere near the company truck it has been in front of our house because the other maintenance guy drives it and parks there to clean the road and yesterday they worked on the fence behind our house, and he doesnt use the company cell phone although he gets "chirped" all the time by the girls in the office and the maintenance guys for help with where is this who do we call for that etc. Dh knows he is out on disability. I told him fine they want to be that way, you need to go to the maintenance lot and get all your tools that you paid for, your lawn mower that they have been using to mow the common grounds, your tractor and little trailor they use to move things around the complex with and bring them home so that they cant use your personal stuff for company business since you are not working right now, they will see just how valuable you are and how much personal stuff you do for them. I truly dont think DH will be returning to work with them surgery or not he is that disgusted right now.

Right now we are broke, running out of food and not sure where to go, but you know what we got each other and DS Stefan and thats fine we'll get through this once we can get the disability checks coming in everything has left a really bad taste in our mouths DH's work accusing him of something he hasnt done, my medical issues again and I will make another thread later about DS school problem, meanwhile I need to get dressed and head to the Doctors and then to Social Services to see if they cna help us a little bit.

BrendaRawson · #2 (**permalink**) 04-16-2008, 11:14 AM

Just want you to know I will keep you and your family in my thoughts and prayers.

devinmom · #3 (**permalink**) 04-16-2008, 11:44 AM

You've got such a full plate - I'm sorry. I'm praying for you and your family.

LBeadle · #4 (**permalink**) 04-16-2008, 11:45 AM

I'll add you to my prayers.

littlejo · #5 (**permalink**) 04-16-2008, 04:56 PM

Go apply for all the assistance you can get. ,food stamps would be the first place I would go. you have to have food or your health will really go down. then I would go see about other assistance. There is lots out there for the asking.
I will keep you in my thoughts and prayers.

itscc2u · #6 (**permalink**) 04-17-2008, 07:59 AM

We applied for foodstamps and because I got my SSDI and my little $80 check from H&R Block we dont qualify for expedited service and we were told because DH's paperwork from the doctor said light duty he can work so he is required to register for their work registration program and find a job before they would even help us and I think its wrong DH right now cant even lift his arms past his chest and he cant do much his nexk hurts that bad and is affecting everything else his hands are numb and tingling he drops things he isnt lazy he wants to go back to work but his boss would not put him on light duty, they could have moved him to the Home Inspections job that they just created temporarily but he refused to which made it so DH couldnt work, there are 83 acres in this community with 701 lots of manufactured homes and he works hard cleaning and maintaining things but their is no light duty so he was forced to not work. DH has always did labor type jobs since we were married, locksmith, car detailer, lumber yard and truck driver and now Maintenance an he cant do any type of office job he cant type good or sadly read well he has a learning disability. I just dont understand the system now we used to get help but his last raise put us $20 a month over the limit for any help which is fine, but my case has always been handled wrong, when your disabled they are supposed to take your net income after all medical including insurance premiums to consider food stamp cases and they always go by the gross, who cares if DH pays $400 a month in health insurance which is one weeks pay they dont, I just am thankful I can coupon well and rebate pretty good and do 14 different rewards programs to help out just a little bit. I right now am very jaded by the system, I see people go in and they drive Caddilac Escalades an get help and we cant, but I have 3 food banks I can get help from locally so I think we will be OK until we can get the disability paperwork back from the Doctor which is a another story they filled out the FMLA stuff, my mortgage stuff but forgot the disability insurance paperwork for his job we can use the $253 a week even though we have to pay $400 back to the company for our health insurance the little bit will help with bills here.

I wanted to Thank everyone for the thoughts and prayers they are more than appreciated I know Prayers work and hope that today we get the papers from the Doctors for the disability insurance.

wizardofoz · #7 (**permalink**) 04-17-2008, 04:08 PM

Quote:

Originally Posted by itscc2u

We applied for foodstamps and because I got my SSDI and my little $80 check from H&R Block we dont qualify for expedited service and we were told because DH's paperwork from the doctor said light duty he can work so he is required to register for their work registration program and find a job before they would even help us and I think its wrong DH right now cant even lift his arms past his chest and he cant do much his nexk hurts that bad and is affecting everything else his hands are numb and tingling he drops things he isnt lazy he wants to go back to work but his boss would not put him on light duty, they could have moved him to the Home Inspections job that they just created temporarily but he refused to which made it so DH couldnt work, there are 83 acres in this community with 701 lots of manufactured homes and he works hard cleaning and maintaining things but their is no light duty so he was forced to not work. DH has always did labor type jobs since we were married, locksmith, car detailer, lumber yard and truck driver and now Maintenance an he cant do any type of office job he cant type good or sadly read well he has a learning disability. I just dont understand the system now we used to get help but his last raise put us $20 a month over the limit for any help which is fine, but my case has always been handled wrong, when your disabled they are supposed to take your net income after all medical including insurance premiums to consider food stamp cases and they always go by the gross, who cares if DH pays $400 a month in health insurance which is one weeks pay they dont, I just am thankful I can coupon well and rebate pretty good and do 14 different rewards programs to help out just a little bit. I right now am very jaded by the system, I see people go in and they drive Caddilac Escalades an get help and we cant, but I have 3 food banks I can get help from locally so I think we will be OK until we can get the disability paperwork back from the Doctor which is a another story they filled out the FMLA stuff, my mortgage stuff but forgot the disability insurance paperwork for his job we can use the $253 a week even though we have to pay $400 back to the company for our health insurance the little bit will help with bills here.

I wanted to Thank everyone for the thoughts and prayers they are more than appreciated I know Prayers work and hope that today we get the papers from the Doctors for the disability insurance.

Christine

I remember you from the board that Dee had with Bree. Are you still a member there and on friendly terms with Dee? Dee is great with handling things pertaining to disabilities. The last I heard, Dee does a great job going head to head on challenging the rights of the disabled when they have been denied their benefits, etc.

Maybe contact Dee, and she will be glad to help you! HTH!

sher218 · #8 (**permalink**) 04-17-2008, 05:04 PM

I am sorry that you are going thru so much...I know just how hard it gets....I also have Lupus, FIbro, Lupus Anticoagulant, I am anemic all the time and I feel like crap most of the time....I have had Lupus for over 12 yrs now, but last Easter I was diagnosed with the Lupus Anticoagulant...Had my gall bladder out a few days before.....all I could remember was the pain in my head...turns our I had 3 blood clots on my brain....I have had many, many shots in my stomach and of course I am on coumidin....I have my blood checked once sometimes twice a week....I have a hard time maintaining a good coumidin level....I have been in the hospital about 7 times in the last 3 months...my coumidin goes from too low to way too high very rapidly....we havent figured that out yet...My INR has been 12 and my pro time has been 102....I go into the hospital and I am given plasma and Vitamin K shots...I get so tired of it....I have also had several blood transfusions because my hemoglobin goes to 7 and I cant function....I recently had to have my thyroid removed and had to go into the hospital the night before to thicken my blood....it took 9 bags of plasma to do that and then immediately after surgery I had to go to having Lovenox shots and high doses of coumidin

Do I get tired of it??? You bet....I have three children 16,11, and 8.....I push myself everyday to just do the normal things...I have been stuck hundreds and hundreds of times....and there are days I want to give it all up......But I will never, I will fight every day, every minute, every second for my children...they need me...and they are what keep me going.....Somedays I dont get out of bed...My lupus has been flared up this week and every joint in my body hurts, my legs,knees, and ankles are so swollen, the only thing that I can get on is flip flops...but my son has ball practice and unless I am dead I am not missing one minute of a practice or a ball game...I limp...look funny or whatever but I am there..my 16 year old is a softball player and its the same with her.

My heart aches for you because I can so relate.....I hate taking all the meds that I have to....I have a basket full....but it keeps me alive and if thats what I have to do then so be it.....I get to see my kids one more day, thats how I look at it...when my blood gets thick....I could throw a clot at any time until they get it thinned again...so I take in every second....I just stare at my children, I memorize their faces...their sayings...and I thank my Lord that he has given me another day....Does that mean I havent cryed myself to sleep wondering why all this has to happen to me??? NO...I have many times...but over the years I have just accepted that this is the cards I have been dealt....I always try to remember what Paul in the bible said..."In whatsoever state I am in, to be content"...thats easier said than done but I try....I always say if the disease doesnt kill you the medicine will!!!lollol But its my best chance I guess....I will just live until the Lord says its my time to die...but in the mean time I am going to just keep going....I have no choice.....Again I am so sorry for what you are going thru and I completely understand your aggrevation and disappointment.....You and your family will be in my prayers.....Sherri

itscc2u · #9 (**permalink**) 04-17-2008, 08:43 PM

Quote:

Originally Posted by wizardofoz

Christine

I remember you from the board that Dee had with Bree. Are you still a member there and on friendly terms with Dee? Dee is great with handling things pertaining to disabilities. The last I heard, Dee does a great job going head to head on challenging the rights of the disabled when they have been denied their benefits, etc.

Maybe contact Dee, and she will be glad to help you! HTH!

You know that board shut down ages ago, Bree opened her old board back but nothing much going there last I checked.

Dee was in a way my mentor and taught me a lot and I learned to fight back because of her. I havent talked to her in a year or more, I kind of know where she hangs out I keep thinking of writing her but never do. I may write and see what she can dig up that i havent already, I dont want a hand-out I just want a hand-up out of this mess right now. I had to go tooth and nail against the school system for Stefan on reduced fee lunches they denied him even though I could prove DH didnt make as much as they suspected he does, I did win that round after a few phone calls to local state officials and one federal one who took up my case.

I think I still have her email may go ahead and contact her.

itscc2u · #10 (**permalink**) 04-17-2008, 08:48 PM

Quote:

Originally Posted by sher218

I am sorry that you are going thru so much...I know just how hard it gets....I also have Lupus, FIbro, Lupus Anticoagulant, I am anemic all the time and I feel like crap most of the time....I have had Lupus for over 12 yrs now, but last Easter I was diagnosed with the Lupus Anticoagulant...Had my gall bladder out a few days before.....all I could remember was the pain in my head...turns our I had 3 blood clots on my brain....I have had many, many shots in my stomach and of course I am on coumidin....I have my blood checked once sometimes twice a week....I have a hard time maintaining a good coumidin level....I have been in the hospital about 7 times in the last 3 months...my coumidin goes from too low to way too high very rapidly....we havent figured that out yet...My INR has been 12 and my pro time has been 102....I go into the hospital and I am given plasma and Vitamin K shots...I get so tired of it....I have also had several blood transfusions because my hemoglobin goes to 7 and I cant function....I recently had to have my thyroid removed and had to go into the hospital the night before to thicken my blood....it took 9 bags of plasma to do that and then immediately after surgery I had to go to having Lovenox shots and high doses of coumidin

Do I get tired of it??? You bet....I have three children 16,11, and 8.....I push myself everyday to just do the normal things...I have been stuck hundreds and hundreds of times....and there are days I want to give it all up......But I will never, I will fight every day, every minute, every second for my children...they need me...and they are what keep me going.....Somedays I dont get out of bed...My lupus has been flared up this week and every joint in my body hurts, my legs,knees, and ankles are so swollen, the only thing that I can get on is flip flops...but my son has ball practice and unless I am dead I am not missing one minute of a practice or a ball game...I limp...look funny or whatever but I am there..my 16 year old is a softball player and its the same with her.

My heart aches for you because I can so relate.....I hate taking all the meds that I have to....I have a basket full....but it keeps me alive and if thats what I have to do then so be it.....I get to see my kids one more day, thats how I look at it...when my blood gets thick....I could throw a clot at any time until they get it thinned again...so I take in every second....I just stare at my children, I memorize their faces...their sayings...and I thank my Lord that he has given me another day....Does that mean I havent cryed myself to sleep wondering why all this has to happen to me??? NO...I have many times...but over the years I have just accepted that this is the cards I have been dealt....I always try to remember what Paul in the bible said..."In whatsoever state I am in, to be content"...thats easier said than done but I try....I always say if the disease doesnt kill you the medicine will!!!lollol But its my best chance I guess....I will just live until the Lord says its my time to die...but in the mean time I am going to just keep going....I have no choice.....Again I am so sorry for what you are going thru and I completely understand your aggrevation and disappointment.....You and your family will be in my prayers.....Sherri

Sherri~ Thanks for the post of your story. it made me cry and lifted me up too. I am curious to learn more about the VItamin K etc,,, I was at the hematologist today for my weekly shot of B12 and the nurse asked how my coumadin level and lovenox shots were going and I told her we had to stop the shots since I am way too high on the coumadin levels and they backed me off the coumadin for a few days too, she said they usually give Vitamin K shots to their patients to bring it down, told me to eat lots of greens tonight which I admit I did because I love my greens. I am wondering if maybe I should be switching my care for the coumadin from the Primary Care/Internal Medicine Doctors to the Hematologist.

sher218 · #11 (**permalink**) 04-17-2008, 10:59 PM

Glad I could make you feel a little better.....I dont go to a Hematologist, my rheumatologist takes care of my coumidin...he knows my body better than any other dr. I have and he has been with me from day one....As a matter of fact when I had my thyroid out, the anesthesiologist didnt want to proceed with the surgery because my INR was 1.6...the surgeon told him he could control the bleeding but he wouldnt have it, so they got to arguing...the surgeon called my rheumy (who, he had already talked to) and he told him to proceed that I wouldnt bleed and I didnt.....I meant to tell you in the first post that my rheumy told me they have come out with a new machine (like diabetics use) that checks your coumidin at home with just the prick of a finger, they had one out a few years ago but it was too expensive and wasnt very accurate, but he says this new machine is much cheaper and much more accurate. He has written my insurance co. to see if they will pay for it....that will keep me out of the hospital so much...I can check it daily and know when it is starting to go up...Maybe ask your Dr. about that....I have had many Vitamin K shots and it will bring my coumidin level down pretty fast...right now mine is a little high so I am staying away from anything green...Please email me anytime....I hope you get to feeling better...sherri

lovelace2 · #12 (**permalink**) 04-18-2008, 09:14 AM

i am so sorry to hear about all you and your husand health problems.You are in my prayers

joyx3 · #13 (**permalink**) 04-18-2008, 09:36 AM

Christine, so sorry you and your family are going through so much! (((((HUGS)))))

Just a thought, has your husband tried contacting your state's unemployment office to see if he would qualify for some job retraining? Learning a new skill since he is disabled and unable to do his normal job...they maybe able to train him and be able to place him in a job.

Good Luck to you and sending healthy wishes your way!

ballmom · #14 (**permalink**) 04-19-2008, 03:06 AM

Praying here too. It just seems like some public assistance would be available to yall, since you have a child to.. keep checking!!

itscc2u · #15 (**permalink**) 04-19-2008, 06:53 AM

Quote:

Originally Posted by joyx3

Christine, so sorry you and your family are going through so much! (((((HUGS)))))

Just a thought, has your husband tried contacting your state's unemployment office to see if he would qualify for some job retraining? Learning a new skill since he is disabled and unable to do his normal job...they maybe able to train him and be able to place him in a job.

Good Luck to you and sending healthy wishes your way!

We have him on the waitlist for services through the States Dept of Rehab services or as we call it Voc. Rehab. They are so swamped it seems with people needing help with retraining etc, they seem to take those on SSDI and SSI almost immediately for help.

I will check to see what the Unemployment office my have or recommend. Social Services has a program that I am not sure he can use even though we have applied for assistance. He would love to be a x-ray tech or even a Pharmacy tech but with learning disabilities it would be hard for him to be accepted to the programs.

Stefan bless his little heart asked us to put an Ad in the community newsletter for him to mow lawns and do some yard work, he's only 9 !!! Told him we appreciate him wanting to help, but we'll be fine eventually once we get those darn papers back from the Doctor so the checks can roll in, we have called everyday and no answer back about them and we now have other forms for the credit cards DH has insurance on, I don't see them being filled out anytime soon either may go to the other Doctor treating him to see if she can fill them out even if we have to pay for them to be filled out.

We did get some good news Thursday on DH at the endocrinologist his thyroid nodules that the PCP was freaking out about have not grown since the last sonogram 2 years ago and the cyst has actually shrunk and his lab values while out of whack aren't that bad so he wont need medication or surgery to remove the thyroid which is a blessing for sure.

Thanks everyone again for the thoughts and prayers and the PM's with the RAOK to help us they mean more than you know.

I am off to do some clicking and surveys like I tell DH the clicking it does add up and I got him doing 3 programs a day now !!!

carolcarolc · #16 (**permalink**) 04-19-2008, 09:43 AM

I don't have any medical advice but just wanted to send you cyberhugs and let you know I wish the best for you and your family and am thinking of you. You too sher! You are both very strong women and wow, that is certainly a full plate to deal with.
I have not done the type of paperwork you were talking about for disability/etc but I know from friends that have gone through major health problems, it sure can be a nightmare. They are slow and sometimes govt people are not very helpful, ugh. I hope you are able to find more good advocates...someone who knows the ropes and can push through the bureaucratic obstacle courses.
Hang in there and know that people here are pulling for you and thinking of you. You are both in my prayers.

read52 · #17 (**permalink**) 04-20-2008, 06:59 AM

You can give yourself the vitamin B12 shot. My husband has to take them for another reason. You can get needles and the B12 for about $30 and it will last for several months. You said that you did not like running to the doctor alot. Ask your doctor if you can do that. It would cut out one doctor visit. He gets his from the family doctor.

dollydeal · #18 (**permalink**) 04-20-2008, 07:41 AM

Why can't these doctors come up with a better way for people who have to take shots everyday to administer these medicines.Why can't they develop some sort of patch or something.

You would think in this day of age they would have invented something like that by now.

I can't imagine having to poke myself with a bunch of needles everyday.

itscc2u · #19 (**permalink**) 04-20-2008, 09:25 AM

Quote:

Originally Posted by read52

You can give yourself the vitamin B12 shot. My husband has to take them for another reason. You can get needles and the B12 for about $30 and it will last for several months. You said that you did not like running to the doctor alot. Ask your doctor if you can do that. It would cut out one doctor visit. He gets his from the family doctor.

I will ask about that the thing is I have to get blood work at least once a month sometimes twice to see how my levels are going. Its my hematologist doing this I wonder if she will do, the girls at my Primary Dr said they could do the shots there when I do my coumadin checks. I will ask if they can give me a RX for it when I go monday.

itscc2u · #20 (**permalink**) 04-20-2008, 09:28 AM

Quote:

Originally Posted by dollydeal

Why can't these doctors come up with a better way for people who have to take shots everyday to administer these medicines.Why can't they develop some sort of patch or something.

You would think in this day of age they would have invented something like that by now.

I can't imagine having to poke myself with a bunch of needles everyday.

Dolly I couldnt agree more at least I am done with the twice daily shots but the weekly B12 and getting my coumadin level checked still makes me feel like a Pin-Cushion, the coumadin checks after awhile make my fingers really sore (I alternate hand and finger) so its hard to type or do my crafting/crocheting. They do need to develop better ways to give medications I couldnt imagine being a diabetic and my grandmother was one and I cringed when she gave herself shots.

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