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Avatar universal

Back in the fold and I'm getting worse.

I have been gone for a while staying busy and getting a little sicker while waiting for my Social Security hearing.  For those who don't remember me, I have chronic back pain which requires 180MG of morphine, 50MG of oxycodone and 12MG of Dilaudid every day just so I can get up.  I have a condition called myoclonus which is a condition where you have small jerky spasms all over your body.  I suffer from chronic depression and anxiety and my left wrist, which I destroyed in a mcy accident is in constant pain and is fused and useless.  I am so depressed that I constantly consider suicide, the only thing stopping me is the fear of the act itself. What if I miss? Let's not forget about the Hep.  Genotype 1b, Count 7e6, Grade III Class II.  I feel like **** ALL of the time, I'm tired and I'm sick of this. I applied for SS over two years ago and I really need the help. I can't clean up after myself, reach the top shelf at the store, or cook for myself, I need help. I have asked people on this forum before about their experiences but I guess my big question is what symptoms people have with similar configurations to mine? I'm so tired and feel like I have a low-grade flu. How about you?  Please advise.
23 Responses
80575 tn?1207135964
Man, I feel bad for you and hope the SS thing comes through.

By your log on nickname you must have some close friends.  We have a lab and terrier that are close members of our family.

Hang in there.
Avatar universal
My last baby passed away in August. I'm moving soon but now I'm heading out to the Oregon Humane Society to rescue another baby and perhaps two. They have given me so much asking for nothing in return. Thanks for the kind words
173975 tn?1216261375
I wish I could wave a wand and make your problems disappear.

You sound like you're suffering terribly, and yet you're still reaching out to help the furry four-pawed ones.

Are you on TX now?

I'll say a prayer that your ss goes through and I send you my best wishes for an improvement in your life, your health, your emotional state and your best friends.  

Hang in there.  The puppies need you.

Avatar universal
yes, I remember you.  Good to hear from you.  It sounds like your condition is worse than before - or your dispair is more.  I don't understand why your disability has not started yet but it sounds like time for an attorney. They usually work for a percent and don't expect to be paid up front.  I wish yo luck with that because it would certainly take some stress off of you.

I honestly cannot remember anyone posting with your varying conditions so it is hard to figure out what your symptoms would be.  Weren't you also waiting for the VA to treat you and they won't treat you because of the depression?  Honestly when you post that ou are suicidal all the time, I have to ask myself how you could handle the ribavirin which seems to charge the emotions.  There have been several people who have made it thru treatment with major depression and bi-polar condition.  There are some who have had chronic back pain.  However, I wourl think you would need psychiatric consultations before and during treatment.  

I was hoping you would have replaced your companion by now.  Have you thought about it?
Avatar universal
sorry to hear you are having a hard time, i hope that you can get the help you need.  i don't know that much about you, frijole mentioned your linked w/VA.

i do know that down here where i am at if one went through the county mental health services which are free to uninsured folk of certain income criteria, a county worker could write a letter, or refer to attny who handles soc. sec. having an advocate can help.

keep a good paper trail of doctor appt.medical and depression, assessments and needs,  anything bolster your case.   sounds like you need help yesterday.. is there a local community group or church group who can help you?
Avatar universal
Who would have thought I would garner so much support and kind thoughts on a forum about liver disease.  You people are wonderful.  I do have an attorney and at one point, after  he submitted my records and requested a decision with out a hearing I was awarded benefits. Then bang, no phone calls, no reasons given but some mid-level jerk put my file back in the hearings pile. So I wait to hear from them and my life is in limbo.

Oh my babies, I miss having my own dogs. I am currently living in a householod with one, sometimes two dogs. They are wonderful. I am retired, another reason I should be granted SS benefits, so I have time for a puppy. I have not raised one for five years. This little guy was grabbed by my wife when she split for greener pastures ... *****.  Well, on the other hand it would be best to rescue one of those guys from the pound.  More and more shelters are going no-kill and keeping the animals for as long as they possibly can. Anyway, I feel like ****, I have no energy and it's cold outside. I live in Portland, Oregon and love it here but I sure could use a nice eighty-degree day for a change.  Peace and love to all of you wonderful people.
Avatar universal
Hang in there ,,,Like kitty says ,and the rest,,
I can too relate to always feeling poorly,,,legs hurt,,back hurts,
always feel like I have some kind of flu ,,,ic,,,and the tierdness,what fun-

Life seems more like a struggle now,,,,Befor the Hep-c-bug got me,,
life was an adventure---

But Lets hope it can be again,,,gotta try to stay positive,,,hard ,I know-
I have two mutts,(Szar,&,Ruby girl),,they make me get up and go for walks,
short walks ,,but most times I feel better for it---

I am HOPing to start treatment this month(fat chance),,but soon,,Not really
looking forward to it,,But we' v got to try ,,eh friend----

Take care,,,,,Gale,,,,,,Kit,,,.,.,.p.s 3 dang cats too-------
Avatar universal
Well ..... I'll have to admit it was your name (dog lover here)  that got my attention, and then it was your note that really got my attention.   I'm on SSDI, and I know very personally that the process in and of itself minus the ailments that made you apply for it can make you want to blow your brains out and that there are times you truly wonder if the day will come that you will indeed take that route.   It took me 3 years (with an attorney) - (didn't have to go to the hearing)  to get it.  I cannot even put into words how awful it was (those years and that process) i.e. - being sick and having to deal with the loss of everything (health, mind, income, self-esteem, self-respect, the desire to keep going) AND "the system".   Since I can look back and call that experience a pivitol point in my life - a truly f****g traumatic one from out of the gate (when I first felt "ill") and then for the next 3 years and then some, I don't hesitate to write about it or to try to help someone else get their SSDI.   In fact, when I did get mine  (finally)  I went on a mission to help some sick friends with Hep C (or not Hep C)  get theirs  (SSDI and 100% ratings from the VA).  Just hang in there -- I think you are headed for a favorable ruling.   Your myoclonus condition and the amount of pain medications you are on and the depression / anxiety is surely ENOUGH to get you the 100% favorable ruling - THIS time.  I think it's a good sign that your attorney has advised you that you won't have to attend a hearing.  That used to mean "it's gonna fly".   I hope that is the case with you.   I will be hoping with all  my might that you'll get it this time.   It's bitter sweet.  

Mine?  I began seeing a shrink in the late 90's because I began feeling like ****.   Everything "medical" was ruled out, and so - docs thought I was depressed, and so I thought I would give "therapy" a try.  I got my SSDI with a diagnosis of chronic depression and anxiety disorder and PTSD and drug addict/alcoholism in remission for >20 years.   The only drugs I was on was those freakin antidepressants they were telling me would help - that never did help a damn thing except possibly knock on my liver a little more, make me feel worse, and also delay a proper diagnosis  (Hep farkin C)  pardon my mouth.   (I'm not bashing AntiD's - it's just that the memory of trying them tends to **** me off when I think about it because I wondered why one wasn't helping me.)   Anyhow...a year after I got that wonderful "favorable ruling" from the judge  (3rd appeal)  on SSDI with a 15 page summary of why I was "disabled"  (I'm being sarcastic by saying "wonderful"  because it sure as hell didn't feel wonderful) I was diagnosed with Hep C and was actually excited over the diagnosis, believe it or not.  I didn't know much about Hep C but I knew enough about it to know that Hep C was probably why I had felt like **** for 5 years, and I knew I didn't like the thoughts of being "mentally ill", and so my first thoughts (when finally diagnosed with HCV)  were "oh this is great!  I'm not crazy after all -  I've only got Hep C!"  I'll never forget the day I was diagnosed with Hep C and I actually was excited to tell people I wasn't depressed -- that it was JUST Hep C.  OMG .... would I ever learn, in the next few days more than I wanted to learn about Hep C.  OMG ... I got on-line and started reading and thought for sure I'd be dead within a year.  I was dreadfully CERTAIN I was near death, and I'll never forget looking around the room at all my pets  (all rescue cases, all at one time abandoned, left for dead, been living the life of Riley with me for years, spoiled rotten, treated better than the boyfriend, they were the love of my life! - one sacked out on the couch who'd been with me for at least 14 years, one woofing sweet dreams on the other couch, and all the cats, all fat and happy,  piled high up on the warm TV, another dog curled up in the recliner, and at that particular moment  (I'll never forget it),  all I cared about was them -- I wondered what would happen to them when I died.  I collapsed (not literally - just sat down on the floor) and they all came over as usual,  and I just boo-hooed my eyes out and told them all I would come up with "a plan" - one whereby they would be able to live the rest of their lives out in the home they'd known for the last 10 years or more.  And here I go - I get on the phone (called the ex I had kicked out a few months earlier)  and told him I wasn't depressed -- that I had just been diagnosed with chronic Hep C and was probably going to die soon (I was crying so hard - not over the thoughts that I might die but over the pets)  and I asked him would he PLEASE take care of them when I died, and I told him he could move back in -- all expenses paid -- as long as he took care of the pets.  He said he would!  He asked if he could come back NOW, and I told him "no - please just wait til I die, OK?"   Seriously - lol  (I seriously did that).   THat's been 4 years ago, and I'm still living and doing MUCH better and.... I'm sorry to say I've lost a few beloved dogs since diagnosis to old age and a few cats, BUT - I have not lost my love for jumping dead center into rescuing another one and bringing it home if need be.  I've often thought that if there's anything left over by the time I do die, (yeah right lol)  MOST of it will go to Friends of the Animals in Utah :)  

Anyhow... off the pet topic because I could talk about my dogs all day long.  I'll save it for another day :)  Now onto "symptoms".  I can tell you this much, and that is -- that every "side effect" that I've heard about treatment is the symptoms I had when I thought I was dieing and was going to doctors trying to figure out WHY I had a rash,  WHY I had a low grade fever all the time, WHY I could not sleep, WHY I had night sweats, WHY I was exhausted feeling, WHY was I having a hard time charting, WHY couldn't I think anymore like I used to,  WHY was I feeling numb in my arms and even my legs at times, WHY did I have occasional bruising for no reason, WHY was my nose beginning to bleed so bad,  WHY was I dizzy feeling,  WHY was my heart jumping and pounding,  why was my hair thinning, why why why why why why -- (nonspecific complaints but I KNEW it was not "imagined".   Finally, I was diagnosed with CHC and it was only because I demanded to be tested for Lupus, and the doc did, and he did a CBC, too, and for the first time my enzymes were slightly up, platelets were down, rbcs and wbcs were down, and he said "have you ever been tested for Hep C?"  

I attempted treatment six months after diagnosis (in 2003 - grade 3 / stage 2 on biospy in 2003),  but - me and treatment at that time didn't get along at all.  I'll just leave it at that and say that I'm waiting for something better and under the care of two great hepatologists.  I'm not on any meds - only my Toprol for my MVP (heart valve condition) and my Valium, 5 - 10 mg - which I take when I'm feeling particularly anxious or have had a panic attack. When I bombed on treatment  (ex druggie here),  I told my shrink I didn't give a flying rat's ass if I became addicted again to something or NOT - someone better prescribe me something besides a stupid AntiD to help with my anxiety or I'd hit the streets and find it like I did when I was 15.  Of course, I was kidding, but - not really.   It was THAT bad.  But anyhow...  I might take 5 - 10 mg once every week.  If I'm going to Walmart, I have to have it - I hate that store.  For some reason that store makes me feel like I'm going to have a panic attack, and so - I take 5 mg if I'm going to Walmart.  Lowes?  I don't need any Valium for Lowes.  It's just Walmart.  

My advice to you on the SSDI   (if you need it further for your SSDI claim - which I don't think you will because I think you are going to get it - that it's just a matter of a LONG long process that you have to wait for)  is - if you don't get it - do NOT GIVE UP.  Don't give up on ANYTHING - including yourself especially!  You are ALIVE!   You still have DOGS!  You love them!  They love you!  They need you!  You need each other.   OK?  OK :)   Get to a psychiatrist, too, if you are not under the care of one.   PUSH those mental symptoms because those are TRULY the ones SSDI considers first  (or... they consider those more than they do many other conditions).  

I gotta go now.  I miss everyone here.  Bug, JmJm, even Kalio lol, Mremeet, Rev  (where did he go -lol?), Myown, Wyntre, Compulsive, Domusic, Foresee, and SO MANY others who have inspired me when I've come here to read, given me strength, courage, taken my mind to a better place  (all good things).  

Speaking of inspiration - if you want to read some encouraging notes that might "lift your spirits" - (ALL of them are encouraging),  but for some reason - I really get a "lift" when I read Foreseegood's notes here.  That is not to toot her horn moreso over anyone else's notes or contributions here - it's just to say that when I read her notes, I feel lifted to a higher ground.   And that also reminds me -- Goofy ... yeah Goofy is funny and has lifted my spirits, too!!   GO is too.   (Grand Oak)   So.... well.... alright -I'm rambling.  EVERYONE here is great!  I don't know why I singled out Foresee and Goofy and GO for you to read if you want some inspiration or something to take your mind off things -- only that those three came to mind at this moment.  

You have a great day, Dog Lover.   Go hug em now!  Sorry this was so long.
Avatar universal
sorry to hear what you have been going through. I remember you also. Maybe you could contact a state representative? Write a letter explaining your situation first and then follow up with a phone call. What NYgirl mentioned is very true as far as ethnic backround, so that may be part of the problem, but I hope you have family or friends around you that can help you with this.

Good luck!
Avatar universal
my sister shot herself through the heart 6 years ago.  she suffered from borderline schizophrenia.  at the time i was supposedly "helping her."   shortly after that my mother suffered a debilitating stroke.  i blammed myself for my sister's death and my mother's strok.  depression swallowed me up, and 5 months later i found myself at the point of a handgun.  Then something interesting happened.
Avatar universal
I have tried to answer this a few times but I keep nodding off. You are all very kind and generous people and believe it or not my suicidal idealations are not as strong as they have been for the last couple of weeks. You have given me faith and hope too.

To put it simply, you guys rock
86664 tn?1291561395
Hi, Dog Lover, I feel for you.  Life is not fun when you don't feel good enough to partake in its many delights.  Re: the HCV symptoms, I've had those for 25 years.  You described it well -- feels like a low grade flu, fever, nausea, weakness and don't forget the night sweats.   Pain and illness make you depressed.   But don't give up because there is hope and you have to believe that you won't feel like this forever.

Do you take any supplements or herbs to help with your symptoms?   Over the years I have experimented with remedies that don't cure HCV but make me feel like I don't have it.  I've recently been on supplements that you spray in your mouth (Vitamist) instead of swallowing and I'm feeling like the energizer bunny again, physically and mentally.  (Previously all I wanted to do was lay around and watch Judge Judy.)   I'm also drinking 1/2 gallon+ of water daily as outlined in  www.watercure.com which a doctor recommended to me.  Water is very important to your mental and physical health.

The Vitamist products I'm taking are Pine Bark, Prenatal, Sea Spray, Colloidal Minerals, and B12 as.  The sprays taste delicious!   Let me mention lest someone doubts my intentions I have no interest other than the desire to share what makes me feel good in the hopes it helps others as well.  I'm sure you can find Vitamist if you google it.

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