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View Full Version : I hate what and how my life has become (need advice)


 

 

 
whyus2
04-06-2008, 06:51 PM
Hi. My name is Julie. I'm 30 years old. On October 31, 2005 I was diagnosed was with Mixed Connective Tissue Disease which resulted in me having protein in my urine, pleursy in my lungs, and swollen intestines. Within one week, my eyes were swollen shut, I gained 40lbs, and was in what I thought was the worst pain of my life, that was until I started have extreme pain everyday and was diagnosed with fibromyalgia on February 6, 2007. I have now gained a total of 85 lbs due to being on prednisone for so long to control my Lupus (MCTD). The predisone ruined my metabolism and ever since I stopped taking it, I gain about 4 to 10lbs every month. Plus being on bed rest for so long waiting for a diagnoses for the painful fibromyalgia.

I am currently taking Cell Cept to control my Lupus, Lorazepam for anxiety, Nabumetone for arthiritis pain, Acyclovir for the terrible sores I now get in my mouth, Ranitidine for GERD, Flexiril for muscle spasms and sleep, Lyrica for fibromyalgia, baby aspirin to thin my blood, Fleurosmide for water retention, 60mg of prozac a day for depression, Oxycontin 40 mg ES for fibro pain during the day (2 a day), Percocet 325/10 for quick release for pain (3 a day) and Morphine 30mg ES (2 every night for pain). I am now having many problems with my legs. They hurt so bad, they tingle, and during the night they won't stay still so now I think I have RLS.

I worked for the State of WI for 8 years and was terminated for long term disability so I get a small disability check every month, plus I have been waiting for an SSI hearing for 18 months so far. We are hopefully suppose to get a hearing in August 2008. I have also had to go on State Welfare insurance and they always find a way to cut my insurance. I'm always losing my insurance for no reason and getting it back so it's caused a lot of stress and me and my husband. My prescriptions cost about $1,300.00 a month.

My husband Joe and I got married on August 6, 2005. I spent the week before my wedding lying in bed in extreme pain. God must have blessed me on my wedding day, because I felt great, but the day after, right back to the pain. These diseases have caused so much stress on our relationship. Our income was cut in half, which caused us to have to file bankrupcy. My weight insecurity has pretty much crushed our physical love life. I'm sorry to keep going on, but this is just a bit of what I've all gone through in the past two and 1/2 years. I am still depressed so the prozac isn't working, I still have pain and muscle spasms in my legs, back and shoulders so the flexeril isn't working. And apparently the Lyrica isn't working because nothing has changed since I started taking that. Lastly, I'm so immune to my pain medications, that the Dr. keeps raising the scripts.

I feel hopeless. I also have a 12 year old daughter and I can't really do much with her anymore and that hurts me so much.

I'm just writing to vent. It's nice to write to people that have been going through some of the things I have. Does anybody have any advice for me? Perhaps, maybe different medications that may work instead of the ones that aren't doing anything for me. And is there any hope in me getting my old life back. I feel like a 30 year old trapped in a 60 year old body. Oh and I forgot, my short term memory has gotten so bad.

Please help?!?

Whyus2

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chelle39
04-06-2008, 07:38 PM
Hi Totally know what you mean. The only peole who do undrrestand are the that are going through these problems. The lyrica also will cause you to gain weight it di for me!! I blew up immediatley!! I read about the pednizone before I started to take it cause i already gained 30 lbs. from being layed up from a 2level fusion that is not fusing so they want me to take steriods oraaly I i refuse to take something that it making me worse cause more weight gain is the last thing I need for a back problem so i have been told to try for disabillty and son't know if i even have a chance of getting it i also was laid off from my job indefinitely due to the back problems. Does it get any better?????

baserockermom
04-06-2008, 08:15 PM
whyus2, my heart breaks for what all you have been through, honestly it just breaks. I have a very similar story to your's in terms of pain before and after the wedding and all the havoc it caused in our marriage. I am so sorry you are going through this--to the point of bankruptcy even! Gracious, girl!

chelle39
04-06-2008, 08:46 PM
Hi, it sure is nice to have someone understand what we all are going though. I also hope things get better for you and stay positive even though it seems hard it keeps the insanity of it all a little better any way!! Good luck and Hope things get better!!

beckyc984
04-06-2008, 09:17 PM
Hi Julie. I am extremely sad to hear what you are going through. I myself had endured alot, which started at age 17, I am now almost 24 and often have days when I feel like I am almost worthless. I hope that things look up for you, I am actually engaged now, we have been together for 5 years and do have money issues as well as I have lost many jobs due to my conditions and the price of medical care and prescriptions is insane, so I can somewhat understand. Maybe try to change your meds to see if that helps, I am no expert but have been on many meds to find the right one, and it seems like it takes forever, but don't give up. I also found that writing helps me very much, especially when I don't want to vent my frustrations out on my family. I am a newbie to these boards, but already found that there are alot of good people here who are willing to support you in any way they can. I truly hope your pain improves. Take care, Becky

gorgee
04-07-2008, 10:46 AM
Julie, I am glad you are here, and welcome to our fibromyalgia community! We all support each other and are so lucky to be able to come here and write to each other. Please keep writing and posting. It is my therapy.

I read you post, and it saddens me, as I am 31, that you have been through so much. I hope you can find a better combination of meds that work. I am on some of the same medications as you, like lyrica 300 mg a day, oxycontin 40 mg a day, and flexerill, but I am also on vicoprofen for breakthrough pain, lexapro for anxiety, valium for muscle spasms and anxiety, and maxalt for migraines, I have been on Lyrica for about 2 weeks and I think I feel a little better, but I am not sure yet.

I do hope it gets easier on you and your family. Please keep writing us and we are all here for you.

Kassandra

sweetjerseygirl
04-08-2008, 01:13 AM
Hi Julie,
You sure are going through a lot and im sorry for it. Really dont know how much advise i can offer. your medical problems are awful. The state you live in is gorgeous but probably deadly on your body with all it goes through. I went to college in Wisconsin and i know it snowed almost everyday. Its a long winter, a short spring where everything was melting and even a shorter summer because it can start snowing sometimes in August, beginning of Sept. Of course i was at the top of the state, so im not sure if it was worse up there but man oh man the weather sure can be brutal, so thats not helping.

I know its hard on you but bankruptcy is kinda the norm for people now a days and although im sure you and your husband are thinking this is the end of the world its not, you didnt ask for this and its not your fault. Try not to blame yourself. If you guys really love one another you will get through this. Some friends of ours just went through bankruptcy and you would never had thought it, they both made decent money but over extended themselves!
They were embarrassed by it but hey it happens ! I know thats not the reason it happened to you but that part of it will iron itself out.

You should be able to get medicare for your scripts, but just in case when things go wrong in that area, remember they are tax deductable and so are the out of pocket cost for Doctors up to a standard deduction. If you paid for medical insurance last year, plus scripts and doctors. You may be entitled to that, its usually between eight to ten thousand. We always were able to have that deduction, so if you havent done your taxes yet, see if that can help for now. Not sure what it is for this year but look into it and see if you can qualify. I was also laid off in May and lost my insurance so we didnt qualify this year because of the loss and blessedly not having to see a Doctor that often or be on meds. I wanted to be off them for awhile anyway, so even while i was still working I went the vitamin route but thats not enough for flair ups.

You and your daughter can find things to do together even if your in bed, perhaps she can do drawings, arts and crafts, watch movies together. (Those you can get free from the local library) Remember where there is a will there is a way, you can look them up on the computer once you have a library card and perhaps, you can get books on tape, she can read to you, might make her feel better. But i know she's getting at that age also, so just talk with her and explain you have to do things this way for now. Youngins are usually more understanding when they know mommys just not feeling well. Even if its only an hr. its still quality time.

I know this is not the way you wanted to start your marriage but what doesnt kill us makes us stronger and the power of prayer can be remarkable. One time i was really really sick and out of the blue i found myself starting to feel better but couldnt understand why, come to find out the church had me on their pray list and prayed for me every week. I had no way to know that until the pastor who visited often came over and we were talking about it and he told me. Even the Ladies guild were praying for me at the meetings and it was one of my little miracles. Now if you dont believe, maybe you should give it a try. At this point couldnt hurt, im not trying to preach and things dont happen overnight but I have had quite a few miracles in my life and though you may feel, it will never happened to you, it wouldnt hurt. Joel Olsteen, i think im spelling his last name correctly has some really good books, you can probably find at the library and he has a T.V. show also but i prefer the books vs. a half hr. show. My mom always said "God helps those who help themselves" and your doing that as much as you can, by filing the bankruptcy and filing for welfare, your helping yourself in that way. Thats a good start. Your trying, so give yourself some credit. Be somewhat positive, anything is better than nothing.

Hopefully your husband will come to understand in time but as you have heard a lot of us say, they didnt understand at first, and remember men are just different in their way of thinking. They dont like to talk about things and they find ways to deal with it, that doesnt include us. Computers, games, staying away and doing things outside. Every once in awhile my husband says i just need to go blow off some steam and i let him go, as long as its not a lot and he always thanks me the next day. I give him a kiss and say i understand, just dont make it a habit........... I dont care who you are marriage is a lot of work for anyone, even if you have the best husband, people have problems that tends to stress the marriage, but if you can get through this together, you will start to feel that your both doing something for one another and it starts to make sense. Compassion towards one another goes a long way and even if your sick, its good to give him compassion also. Just tell him i understand how you feel but unfortunatly this is the way it is for now, we just need to get through it. Sometimes it takes an awfully long time to get a break through to a man but its not impossible.

Welfare, well im sure thats not a good feeling either but hey your truely in need and in a small way be glad you can get the help. We all know there are people out there that abuse the system. Im orginally from New Jersey where people would shop with welfare stamps (as they were back then) buying the most expensive steaks and lobster, that outraged us, they would have pools and cadillacs in the drive way. I could never afford that and i wasnt even on welfare.

Dont ever worry about writing a long post, just vent and get it off your chest. Geez look at the mini book i just wrote you. I tried to cover all the basis that i could remember from your post and i read it a few times because i knew i couldnt go back and look at it as i was writing this. I just remember i forgot one thing about your meds. Dont give up, we all had to try different ones until we found what worked for us. You can look on line and find out about meds, what they are for, and what is in them, What they can do for for you. Iv had some bad reactions so If your up to it do some homework on your own. Always ask for samples, thats why they are given to the Doctors. I believe Lyrica is for the nerves, sounds like you may need to take a muscle relaxer along with it. Take it one step at a time. Cross each bridge as you cross it, try to keep the stress off you cause that makes things worse. Good luck, i will continue to keep you in my prayers and for now im sending you some :angel: :angel: :angel: :angel: to watch over you. Take care of yourself for now and try to have a good day. Keep that pretty smile on your face or put it back on there, cause thats where it belongs and laughing is the best medicine sometimes, so i goof on myself a lot ;)

sweetjerseygirl
04-08-2008, 01:21 AM
yes, i justlooked back and notice i did miss a few things but i will try to address them tomorrow. I seen you do have a muscle relaxer but we will talk more later. If you dont mind..............

baserockermom
04-08-2008, 09:39 AM
Julie, what sweetjerseygirl says about prayer is true. When my dad found out he had end-stage renal failure (meaning he would likely die within 2-5 years) I desperately wanted to move home. I kept a log of my prayers and over 250 little things were answered to get us home in just a few months. If you have a Bible and that kind of stuff doesn't make you nauseas and you don't know how to pray, just pray the psalms--everywhere it says "evil" replace that with the evil one who would love to see you destroyed and everywhere it says "righteous" replace that with you if you believe in Jesus (He makes you "righteous" in God's sight). The restoration that can come from praying the Psalms was unbelievable for me during that time I so desperately wanted to get home. I need to pull that book back out!

Also, Julie, when my mom was battling with cancer she had no money. We contacted the manufacturers of the medicines and asked for help. They will give you a form to have filled out by your doctors and will usually give you the meds for free from there. It's called indigent care or something. Take care!

Smithville mom
04-20-2008, 11:24 PM
I agree with prayer! I'm a firm believer in it! If I didn't have Christ in my life idk what I'd do!

Have you ever tried taking some vitamin supplements? If I go 1 day with out mine- I'm in trouble!

I was diagnosed with FM 1 month after I turned 22!! My 1st son was just 6 months old. It has been very hard for me to watch all my friends play volly ball or bowl... I can eat red meat of any kind... it kills me- send shooting pains to my joints. PLEASE DON'T EVER FEEL ALONE!
My husband is a wonderful man - but there are times that he just can't understand what I am dealing with... the old "suck it up" "you just have to push yourself"... he just doesn't understand it's not like that!!!
We too have like NO MONEY!!! He works 2 jobs to support me and our 2 boys... That makes me feel real good - I'm home on the couch and he's working 2 job - what kind of a wife am I??? A sick wife... We have no health insurance - so I had to try herbal supplements - I could NEVER afford the cost of prescription meds!
I guess the reason I'm saying all this is because with out prayer - I think I'd be so depressed that I wouldn't be able to function... but I'm really not! I thank God every day for the blessings He has give me. I'm really not trying to sound like all religious - just give it a shot...
It sounds to me like your doing a great job with the "hand" you've been dealt - you should be proud of yourself for it!!!
Keep your chin up!!!

bluelakelady
04-21-2008, 09:35 AM
no matter what health issues life tosses your way your life is still a precious experience. never forget that you are what you believe within your mind and heart. the body is what it is. within the mind tho is the woman, the beautiful, sweet woman. still there. still as lovely as the day of birth. this aspect is you. the beautiful you your sweet man loves.
love is a magical thing. a man sees the beauty of the woman he loves. not the package she comes in.
hating your life is pointless and only wastes your precious energy. embrace and make the most of it. it is the first step on the journey to peace and contentment.
peace, joy, welcome,
bluelakelady





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