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Where has the last 6 years of my life gone?  The worst part of it all started in May, 2006 shortly after I was referred to a pain clinic for some of my MS and other related aches and pains. However, my journey actually began back when I was still working in the early to mid 1990's.  If I was prescribed either Vicodin or Cough medicine for any reason, I noticed a big change in how this body of mine felt (i.e. not as painful).  As time went on and I got any kind of opiate pain killer, I would try and make them last - used them for the times I just needed to escape my body.  If I wanted to escape my mind, I would have a drink....  Those were my 90's....

During the late 1990’s, other people with MS were recommending to me to use marijuana for my tremors and pain.  I had given up pot years earlier but I needed something.  Tried it and WOW, what a difference it made in how my body felt.  I was a bit paranoid at first but that went away.  I learned how to make brownies so that I wasn’t smoking it and Vaporizers were a rather new thing out in California so I wasn’t really aware of them.  What it helped me with the most was total body relaxation.  Trust me,  a body that is tight, stretched, legs feeling like someone is pulling them off of you 24/7, well, it just really helped.

More over the jump

Then in the early 2000's, told my doctor that the best drug to help me with my pain was Vicoprofen.... which is Vicodin except with Ibuprofen instead of Tylenol added.  It was the anti-inflammatory part of the "Ibuprofen" that helped.  However, my doctors said, "I cannot prescribe that long term and I asked, why?"  He responded that it was the "Profen" part of the drug that would destroy my liver and my kidneys.

Well, bummer.  And a warning to all those out there that pop a lot of Advil or any other product with Ibuprofen in it....  Once in awhile is fine but every day use has long-term consequences.

So my rheumatologist began prescribing me Vicodin on a regular basis.  Again, as my body is going through changes.... M.S. neuropathic pain, arthritis and bursitis, severe back pain and finally Fibromyalgia.  Wanting a new body and feeling like I got a few hours break on the pain medication, I was actually content with the situation.

Then I changed neurologists.....  

My new neurologist prescribed me Ultram.... well, I took the Ultram with the Vicoden and Ta Da, GREAT pain relief all around.  But it was also a flag to both of my doctors, who I demanded that they SPEAK to one another and they did.

That is when they both said, "Your pain needs to be dealt with by a pain clinic, it is more than we can take care of."

GREAT....  I did not ask to see a pain clinic but if I wanted pain relief, that is the way I had to go and did.  Oh, trust me, I had already been through the Neurontin, Lyrica, Vioxx and other supposed pain killers that only put me to sleep and did nothing for my pain.

The pain clinic started me out on Vicodin.....  Then one day I was in the office and telling Veronica, the PA or Physician's Assistant, that I never took the pain pills at night because I was wide awake by 2:00 or 3:00 in the morning.  She interpreted that to mean I need 24/7 pain relief and so my journey into the abyss began.

She prescribed me Fentanyl Pain Patches.  I demanded the lowest dose, which was actually the pediatric dose.  This was May, 2006, yes, 6 years ago.

Went home, plopped that thing on me and within about 2 hours, I felt it, my body felt it, but so did my mind.  Fentanyl is an anesthesia and 80 x's stronger than morphine.

These pain patches are supposed to be changed every 72 hours.  It did not take long for my body to tell me - NO, you gotta do something at the 60 hour mark.  I would get bugs crawling all over my body... electric shocks shooting down my arms and legs, painful back aches, etc. so the pain clinic had me change them every 48 hours.

It was not long, I don't even think it was a year, before they bumped my Fentanyl prescription up to the lowest adult dose.  Again, losing a bit of my mind at a time when I had lost my father, lost my mother-in-law who I did a lot of taking care of, a friend who had blown his brains out, another who drowned from MS, all within 9 months.  It was an emotionally taxing time but hey, I was on this Fentanyl and a bit numb to it all, though I did do a lot of crying and grieving.

Then, the Fentanyl patch was not working and Veronica, the PA, wanted to bump me up to the next dose of Fentanyl.  I said no and requested another option.... Morphine.... Yes, I agreed to morphine.

I took the morphine for about 1.5 years before I just couldn't stand it anymore.  Morphine does wild stuff to your mind, so back to the Fentanyl patch we go....  And all during this time, I am also being prescribed oral pain killers as well.  Though I did not take what they were prescribing me - FACT:  I would ask her not to write me a prescription - Why if I didn't need it?

So.... sometime during 2010, I began to overlap my Fentanyl patches.  Yes, I was needing the higher dose but told myself, No Way !!!!  Found myself taking more of the oral pain meds and now, I was wearing the equivelant of close to the next higher dose in Fentanyl.  

I quit thinking of the future.  I quit wanting to do so many things, due to side-effects, a mind MIA, so much of my life was just slipping away and yet I could hide on MySpace and then on Facebook, as well as DailyKos, Huffington Post.  My life was slipping by me.  My plans for the future, canceled.

Well, finally went in to the pain clinic and they did their drug testing and Ta Da, I showed up positive for the THC metabolites.  OK, after talking to the doctor, if I fail 3 tests, his Liability Insurance as well as the DEA requires that he fires me as a patient.  Once again, an insurance company telling their client “how it’s going to be.”  He could have cared less, but his license was something he wants to keep.

All of my appointments thereafter, if I used, it was right after my appointment then I would be clean for 2 ½ weeks.  No problem…..  You can quit marijuana anytime, what you cannot quit is narcotics.

The pain clinic decided that, since my original idea was to have a baclofen/morphine pump put in, which would deliver medications directly to my spine, it was time for me to go that route as well.  They knew how I felt about wanting my mind back and told me it was the only way....  Yeah, Right.

Late March, I went into the hospital where they did a "trial run" with a morphine pump.  One of the most traumatic medical experiences in my life.  First, they did NOT take off both of my Fentanyl patches, even though before they turned my lights out with the Michael Jackson drug, I was taking them off and telling them.  So.... I have this patch on me and they are giving me MORE fentanyl as well as Versed and Propofol not to mention the direct line of morphine into my spinal canal.  

They taped a box onto my stomach, used tubing they put into my lower spine to deliver the morphine.  I was in another world....  Hallucinated twice, would have these incredible "head rushes" or "whooshes" and was freaking out.  Had I lost my mind?  How did I get this point?

Then as they were taking all this test equipment off and out of me, I developed a spinal fluid leak.  They say it is a headache like no other.  I've had migraines and I'd rather have a migraine than what I went through for almost 2 weeks.  When I called the pain clinic a week later and told them I still could not sit up without my head splitting open, I could not lay flat because my back spasms were so intense.... they told me to slap on two Fentnayl patches and take the pain pills every 4 hours and to call the next day.

Well, I was sooooooo messed up I failed to call them the next day but I did call the day after and that is when they informed me it was too late to do anything about it until AFTER EASTER, but had I called the day before, they could have done what is called a spinal blood patch.  Something that used to be done quite frequently after women would get an epidural during childbirth (now the needles are so tiny, there is rarely a leak or a need for this procedure).

When I finally got in for the blood patch.... the minute I woke up from the anesthesia I knew it had worked and yet here a pain clinic, who are supposed to help with your pain, caused me to be in more pain for such an extended period of time... I thought, I'm through, I'm done, I want off all this stuff.  All I need is some pain medication on hand, not my mind lost to the stars.

Well, I gave myself time to decide whether I was going to go through with the full implant, though I had already made up my mind in the hospital, I was too much of a mess from then until after the spinal blood patch to make a decision, though I already had.

I canceled the surgery.  The doctor was most displeased with me.  Then the pain clinic told me there was nothing else they could do for me and well, the end of a relationship was starting to fall to pieces.

So, Veronica, the PA, tells me on the phone when I told her I wanted off the Fentanyl all together and that I did not want the surgery…. Her solution?  Make out a “withdrawal chart” that I think I could follow and then she would prescribe me the pediatric dose of the Fentanyl patches the next time I came in.

Well, I went 6 weeks in between my appointments because I went in steps and one was to go back to changing the patches every 72 hours.  The first couple of weeks, maybe even 3 weeks, I used my personal green stuff to get through the changes.  Remember, I’m on my own here…. No help from the pain clinic – just make your own withdrawal chart.  W.T.F.?

Bought me a THC at home drug test, as I always did if I was concerned I might test positive and it said I was free and clear.  But I get to the pain clinic, where they have a cup waiting for me and they inform me that I tested positive for THC (btw, there are 2 different cutoffs that labs use, 20 nannograms and 50 nannograms, the OTC ones test to 50, while 20 is much more sensitive).  Well, to say that was the end of our medical relationship is putting it mildly.  I mean when they get the test results back of the amount, they will see it was a very small amount in my system.

So, the pain clinic was already losing a trusty “monthly drug addict” on my request, though I wanted to be able to obtain pain pills as needed…..  

Oh, I didn’t even mention all the psychological testing they did on me either.  I was found to NOT be a drug addict, and yet, here I was one.

Today, Saturday, May 26th, 2012, I am wearing my last pain patch..... it isn't doing much anymore but I'm not ready to tear it off.  The bugs, the withdrawals, the digestive issues and other side effects have been horrible but my husband keeps telling me it's nice to have me back.  I told him it's been a long time.

So, while I'm still having to take half a pain pill to keep the bugs away, it's half a pain pill and now I know I can do this.  I also know that this time next week - I might even have my mind back..... Granted, I might want to make it go away again.  Only time will tell.

This all happened and before I knew it, I was a drug addict.  While I told my husband I wasn't out actively seeking more and more drugs he reminded me that I was addicted to this fentanyl patch and therefore, I was a drug addict.

He. Was. Right.

When are they going to get real about Medical Marijuana?  The pain clinic had to fire many of their patients because they had NO traces of the drugs they were prescribed in their system, which indicated they were selling the drugs.  I always tested positive for my prescriptions.  But what isn’t fair is someone could go out on a Friday night, do a bunch of different kinds of drugs, alcohol, cocaine, even heroin or Meth and test negative by a Monday or Tuesday drug test.  Our system is wrong and needs to be changed.

But until then the Economics must change:
1.    Prisons for Profit that are kept full at taxpayer expense by the
2.    Laws that employ Judges and lawyers (on both sides) at taxpayer expense who are busted by the
3.    Law, police, DEA, etc., again at taxpayer expense.
4.    Don’t forget the Pharmaceutical and Alcohol industries who do NOT want marijuana legalized at all, even for medical relief.

Originally posted to MarciaJ720 on Sat May 26, 2012 at 01:22 PM PDT.

Also republished by KosAbility.

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Comment Preferences

  •  I don't follow. (4+ / 0-)
    Recommended by:
    weck, Shockwave, KelleyRN2, MarciaJ720

    Did MJ make you feel better? If so, why don't you just smoke (or vape) pot? Whether or not medical marijuana is legal in your state, buying pot is easy, everywhere.

    •  No, it's not easy to buy/find for all of us. nt (6+ / 0-)
    •  Move to Oregon (15+ / 0-)

      Over 55,000 Oregonians have Medical Marijuana Cards.  

      Undoubtedly there are some people who grow or purchase medical marijuana just for recreational purposes.  However, this program is a godsend for thousands who use marijuana for intractable pain and those thousands include people you might think would never touch marijuana, such as the sweet grandmother next door who finds it the best relief for her rheumatoid arthritis; or a church pastor who, like you, suffers from MS; or your accountant, who uses it to help with the nausea from chemotherapy.

      I am amazed by the number of elders who use MJ for the chronic health problems that develop as people age, and touched by the support groups that coalesce among these folks, who have never used MJ before and have no idea how to use it, who teach others the best growing techniques, who work on developing plant strains particularly helpful for particular problems, such as nausea, muscle spasms or parasthesias from back injuries.  

      I'm proud to live in a state in which the majority of people have voted to legalize medical marijuana use and voted to legalize assisted suicide for the terminally ill - a program with careful safeguards built in to it.  I'm proud to live in a state in which people believe that each person should be free to make choices about their own health.    

      We'd certainly welcome a friend from DK.  
       

      I have no help to send. Therefore I must go myself. Aragorn

      by Old Gardener on Sat May 26, 2012 at 02:38:55 PM PDT

      [ Parent ]

    •  I wrote a response but it did not post (5+ / 0-)

      I am almost 50 years old.  I am disabled.  I do not get out much like I once did....  doctors and Walgreen's and getting in the pool are my form of entertainment these days.

      I also live in Texas.  Not a friendly state to live in, for sure.

      I tried to get 3 different doctors to prescribe me Marinol so that testing for THC was not an issue in my life.  All three said that I had to have AIDS wasting syndrome and all three laughed when I told them that the pain clinic would have to fire me as a patient if I came out positive a 3rd time (over the course of time mind you).  I told them it was the Liability Insurance that was putting the pressure on the pain clinic to do more routine drug tests.

      My husband is a bit older than myself and I am hoping that once he retires and after my mom passes.... well, hell, she could outlive me - she's as healthy as a horse at 82 and supports MMJ 100%, that we will move, maybe to New Mexico, who knows though.  But for right now, I am stuck here in Texas, where I am a criminal.

      Oh, detoxing off this fentanyl crap - was told by a doctor friend who lives in another state, to try and get off of it by myself.... that I did not need a "drug addiction hospitalization" on my record, even though it is ME that wants off this stuff.  

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sat May 26, 2012 at 03:26:21 PM PDT

      [ Parent ]

      •  I might add (4+ / 0-)

        Due to my MS, I have swallowing problems, plus a tight, girdle like sensation around my abdomen.  I do not eat much and am currently 5'8" and I'm doing good if I weight above 120 pounds, today, I weighed 120.5.....

        -6.13 -4.4 Where are you? Take the Test!!!

        by MarciaJ720 on Sat May 26, 2012 at 03:28:27 PM PDT

        [ Parent ]

        •  Marcia (3+ / 0-)

          Ckeck to see if there are any Scenar therapists in your area.
          www.invet.net.
          I had nerve damage from my L5 for over 10 yrs.
          I had 1 tx and it was gone. I went in on a high pain day and a closed mind. Came out thinking it was a nice massage.
          Next day, I woke up pain free.
          Amazing device.
          I even got work comp to buy a device for myself. If you think of that, only buy from that company. There are knock offs, but they do more harm then good.
          I cut down from 12 meds to just 4. Take 2 percs 2x a month now.
          Kos mail if you would like further info.
          Also Natural news.com has excellent advice on FM. He is kooky politically, but his disease advice is good.
          There are many Holistic advice too.
          Good luck

          OBAMA'S GUIDING PRINCIPLES: HOLD NO ONE ACCOUNTABLE. LOOK FORWARD.

          by snoopydawg on Sat May 26, 2012 at 08:56:16 PM PDT

          [ Parent ]

    •  Me either. Pot works. Testing positive. (5+ / 0-)

      So no problem getting it.  And if it works?

    •  Yes doc2 (1+ / 0-)
      Recommended by:
      cotterperson

      MMJ does make my body feel so much better.  There IS a reason why so many people with Multiple Sclerosis swear by it.  We have a symptom called Spasticity.... it is a tightness in your muscles caused by the messages going up and down your nerves being off synch.... For example:

      The nerves running down to your legs and the nerves running back up to your brain, are not in synch.  The body doesn't know what to do so the body part just stiffens up, not knowing which way to go.

      In my case, the nerve tests they have done show very little speaking between my toes and my brain.... in fact, my last test showed they could not even differentiate whether my nerves were even speaking.... they do some because I do have some function..... but you'd never know it from these tests.

      Anyhow, I timed my use to make sure I would be clean by the time I went in to the pain clinic..... and if I questioned whether I would be clean, I'd take an at home THC drug test.  Apparently, the tests they are using are more sensitive than the ones bought at the store.

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sun May 27, 2012 at 08:43:42 AM PDT

      [ Parent ]

  •  I'm so sorry this happened, Marcia (12+ / 0-)

    We go to the doctor to get better, and it really sucks when the opposite happens.  

  •  I'm sure glad they kept you away from the evil (7+ / 0-)

    weed. Hell, you might have hurt yourself.

    Personally, I think that we should all suffer all of the time, because I'm sure that that will make someone somewhere happier!

    There can be no protection locally if we're content to ignore the fact that there are no controls globally.

    by oldpotsmuggler on Sat May 26, 2012 at 02:31:31 PM PDT

  •  I hope all goes well for you (7+ / 0-)

    I'm so sorry you've gone through so much.  Best wishes.  

    I have no help to send. Therefore I must go myself. Aragorn

    by Old Gardener on Sat May 26, 2012 at 02:44:59 PM PDT

  •  Republished to KosAbility. (8+ / 0-)

    I had a much better experience with a Pain Clinic and Fentanyl patch therapy than yours.  I'm truly sorry you had to go through all that.  Unfortunately, finding a good pain doctor can often be a matter of luck of the draw.

    •  Thank-you (8+ / 0-)

      I have a dear friend who saw his doctor yesterday.  Board Certified Internist.  Told him about me.

      The doctor, who has a waiting list, told my friend to have me call  his nurse first thing on Tuesday, tell her who I was and that the doctor wants to see me ASAP, as in NEXT WEEK.

      Who knows, there may be light at the end of this tunnel.

      I do not want to be doped up but I also do not want to be living in pain.  I do know where my happy compromise is.

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sat May 26, 2012 at 04:14:55 PM PDT

      [ Parent ]

      •  Like I said, I was very lucky. (10+ / 0-)

        My pain management Doc's board certified in Physical Medicine and Rehabilitation, and so his background was one which gave him experience balancing function with treating symptoms.  When I was needed to assume the role of primary family caregiver for my Mother, and my meds interfered with my ability to care for her adequately, he worked closely with me to titrate down the dosage on the narcotics, augment them with less "fogging" analgesics and other modalities, including P.T. and neural stim, and ultimately I was able to withdraw from all narcotics entirely.

        I won't pretend I'm pain free, but with good and coordinated care, I can testify that life with chronic pain can get easier and more comfortable.

  •  Fentanyl (8+ / 0-)

    Thank you so much for sharing your experiences.  I have had MS for over 30 years and a small cluster of other autoimmune diseases such as arthritis, fibromyalgia and something that causes large ulcers on my tongue.  That one is so rare it does not have a name.

    My Neurologist told me that a lot of patients do have groups of autoimmune diseases. Fibromyalgia seems to travel with them a lot of the time.  There are many times though, that the pain is nearly unbearable, but I am my husband's caregiver after he nearly died of MRSA so I keep going.  I don't even know how, but it is worth it to me.  I love him very much.

    Your discussion of Fentynl resonated so much for me.  One of my doctors tried to get me to use the patches.  I bought some and got home with them and then read the package insert.  When it was describing how to put one on it cautioned the patients against touching "the poison" on the patch with their fingers.  I remember thinking that if the manufacturer was calling it poison, maybe they should be the ones to wear the patches.   I returned them to the doctor and presumably the doctor disposed of them.

    I'm sorry for everything you have gone through, and I hope you find something you can do to make it better. You have my best wishes and all of my good thoughts.

    If I have screwed up this post too badly, please give me a pass today.  It is a bad pain day and I am exceptionally clumsy.  

    Agita

    •  Thank-you for your story (1+ / 0-)
      Recommended by:
      cotterperson

      I too read the inserts the first time and hesitated but desperate times call for desperate measures.... and that was where I was at.

      And you are so right, I have had auto-immune problems my whole life as well.... very weird stuff too.  As a child, geez....  I had horrible cluster warts around every single fingernail, I mean they would have been the kind someone would take a picture and post on the Internet as an example, just to gross people out or use as a medical teaching aid.  it was a cancer cream that finally made them vanish in 3 weeks.  Kind of scary.  Skin problems, and allergies, some dangerous too, filled my childhood.

      I am slowly waking up from a slumber.  My memories of the past several years.... well, what I retained anyway are foggy.

      How quickly a person can fall.  For me, it took me 6 years but it finally happened and I am glad it did.

      Luckily, I am not one that craves narcotics, I do crave relief though.

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sun May 27, 2012 at 08:00:58 AM PDT

      [ Parent ]

  •  My state enacted a restriction on dosage (4+ / 0-)

    at the first of the year so I was forced to go on morphine which messes with my mind in a bad way.
    I have to go to a pain clinic and the first appointment I can get is in October.

    I have had to take pain meds sine 1999 and even when down to have strength after a bypass.

    Thanks to those who were abusing my kind of pain meds and the company constantly raising the price, I cannot  afford to get them now anyway.

    I don't want to end up brain dead, the f patch has been suggested but scares me.

    Guess I will just have to suffer through the morphine until the pain clinic sees me.

    It takes a lot of strength to quit completely, I did it after my bypass thinking I would be pain free, but after 9 months of pain dreams, shots in my groin 3 times a week and suffering I had to go back on the meds.

    Good luck. I hope you do well.

    •  So sorry for your struggles (1+ / 0-)
      Recommended by:
      cotterperson

      Morphine messes with my mind as well.  Like I wrote, I was hallucinating in the hospital and was fully aware that I was.  Don't want to go back to that ever again.

      You can at least get morphine or MS Contin (Morphine Sulphate Continunous) at generic prices, the Fentanyl patches, even the generics are quite expensive.

      I hope you get some relief.  Make sure the pain clinic is serious about helping you with your pain and not creating a monthly paying customer (i.e. addict).  

      I will tell you that I did get better pain relief from the morphine than the Fentanyl but..... the morphine, like you said, messes with my mind in a bad way too.

      Good luck.

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sun May 27, 2012 at 08:06:08 AM PDT

      [ Parent ]

  •  I had a similar experience (3+ / 0-)

    with pharmaceuticals for ptsd.  I went to a doctor (who was later forced to close his clinic for malpractice) who gave me mountains of drugs- when one wasn't working fast enough for him, he'd double the dose and add another one in.  Since I saw him every two weeks, this was a whole lot of doubling.  In six months I went from an active, fit and happy person with some vulnerabilities to an overweight lethargic and sick person who could not string two sentences together.

    No one new what was happening to me and just thought I was (????) "not trying"...but I was really bedridden.  Not in my right mind, when I realized it was the drugs, I got off immediately and by myself and had a small stroke. I was very lucky to have survived! But it took a good three years to be functional again.  There is no doubt in my mind that MMJ would have been far far safer.

    No ability to sue in my situation in Texas.

    I'm sharing my story with you Marcia, although it is a different one, to let you know that there are people who understand the loss, the unspeakable loss, caused by pharmaceutical when a little natural remedy would have been so very much better.

    I understand, and wish you all the best with your new doctor.  I know it is hard in Texas to find enlightened care.  

    (((((Marcia))))))

    •  Hey Lonely Texan (2+ / 0-)
      Recommended by:
      cotterperson, melo

      I'm from Texas too, so you we can't be too lonely.... :))

      As time went on, I was spending more and more time in bed, that's all I wanted to do..... And yet that just made me feel like a useless piece of human waste taking up space.

      Since I was 16, when I moved out of my parents' house, I have been a very driven person.  I worked and continued high school too.  Had a such a good paying job that by the time I was 18 and my friends graduating and leaving for colleges and new lives, I couldn't up and quit.  

      Even after I went on disability, I worked part-time and then did quite a bit of volunteer work for the MS Society.

      All of that, gone.  I feel I have to start over and am ready to.  At least I can think again.  

      -6.13 -4.4 Where are you? Take the Test!!!

      by MarciaJ720 on Sun May 27, 2012 at 08:16:53 AM PDT

      [ Parent ]

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