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  • #16
    Kara.. I think you are just thinking ahead.. Try not to do that because it will only depress you more..A job would only make things worse on you and you could be jeopardizing your disibility.. Take a big breath and rethink all what you are saying...((((((((((hugs)))))))))))

    Ronda
    Hugs
    Ronda

    ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


    Link to Patient Handbook:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

    Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

    Meds I have Tried:
    Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
    Lexapro< Bad reaction to this med!
    Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

    Dx With IC in Nov 2006 with Hydro/Cysto
    Hydro/Cysto Caused Bladder to Rupture.

    Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



    ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

    Comment


    • #17
      I was told you can try to work for a year without fear of losing disability. Also, you are allowed to earn up to $800 or so above your disability? Is that right?
      http://www.TheCraftyEwe.etsy.com

      Comment


      • #18
        Kara- I am in the same predicament as you are. I haveto fly from VA. to L.A. for the best urologist in the u.s. to do my cysto/urethrectomy. Stay in the hospital -UCLA for 1 wk, then at about $100 per night stay inthe hotel across from the hospital for 3 wks, then fly home. Thank the Lord that he is covered by my health insurance, but everything else I have to pay for. But because I am very sure that this will be the end of i.c. for me, I am very willing and ready to do it, and have saved and worked as hard as I can to do this. So just think about the life (a better one) you can have after this is over and the surgeon has repaired you. Just trying to support you, this is all very hard. The advantage you have is a husband, parents, siblings who care about you. I have the Lord and a few friends, nothing else. But I believe help will come. your friend, Aileen

        Comment


        • #19
          Hi Kara, I'm so sorry to hear you have yet another symptom....I know what you mean....that's why you're moderator of this "complex cases" section, right? Yours is for sure a complex case, and if you think of it, everything IS connected really...

          Regarding working, personally, if you can get by without it for now, I would wait, you have soooo much going on! Plus, you'll have to be out for a while with your surgeries.

          I just got a part time job (probably only under 10 hours to start) a standing up job as a Sales Associate. I'm hoping and praying first of all that I am ABLE to do it, and secondly that it does not affect my disability claim....but they DID tell me that you ARE allowed to make up to $860 per month and still be considered eligible. Seeing as you're already on disability, if you feel you really, really HAVE to work, it shouldn't (?) affect your disability much...but I just don't know!!

          I hope you're feeling a bit better today, I'm gonna give you a call this weekend when my minutes are free. I love you and pray for you (and all of us) every day!

          Love, Chris
          Thank You all so much to everyone here for all your sharing, caring and support!
          < My "Bear"
          CurrentTreatments:
          Started herbal teas 6/2/06 Marshmallow root, comfrey root, and catnip. 6/25/06 added Mullein Leaf Powder to tea.
          IC Diet
          Hydroxyzine 50 or 100mg at night (Is restarted)
          Zoloft 100mg 4/8/07 (Is restarted)
          Klonopin 1/2 mg 4 X Day (started 3/17/07)
          Past Treatments: Amitriptyline, Neurontin, Hytrin, Heparin instills (was Dc'd after 5 weekly tx's due to severe urethritis), Superior hypogastric plexus block, E-stim, Elmiron instills (started 4/18/06-Dc'd 5/30/06 due to severe urethritis/infection requiring foley cath @ home 4 days), Oxycontin (oxycodone) (4/18/06)-pain (Dc'd 5/31/06), Levsin S/L (hyoscyamine) (3/17/06)-antispasmotic (Dc'd 5/31/06), Elmiron (1/24/06)-(Dc'd 6/25/06), Prelief, Zanaflex 4mg for PFD (Dc'd 10/1/06), CystaQ 1 in am & 1 in pm with food(started 5/12/06-increased to 2 in am & 1 in pm 9/20/06---Dc'd 10/18/06), Lyrica (started 10/26/06 up to 600 mg-Dc'd 12/4/06 due to urinary retention), Vicodin (hydrocodone) ES PRN for pain (Dc'd 1/4/07); Cymbalta 30mg (start 1/17/07) up to 60mg in am (1/26/07) (D/c'd 3/17/07); Ativan 1mg(Lorazepam)- PRN Anxiety (changed to Klonopin 1/2mg 4Xday 3/17/07); Pyridium (phenazopyridine) PRN-bladder analgesic; MSM (6/12/06) 1000mg after breakfast & dinner (Dc'd 3/15/07); Acidophilus (Natrol) 100mg. 1 capsule 1/2 hour before breakfast (5/20/06) (Dc'd 3/17/07)

          Added BACK in - Atarax (hydroxyzine) (started 4/6/06 Dc'd 5/31/06) Restart 50mg at night 8/18/06, up to 100mg at night 1/4/07. Zoloft 100mg-Depression (Dc'd 7/25/06) Restart 4/8/07) 100mg.
          Dx'd: Dec 05 (Positive PST in November and positive cystoscopy in Dec) Symptoms: Pain, frequency, urgency & retention


          My Myspace page - http://www.myspace.com/42620225

          Comment


          • #20
            You should post the cities/locations you are looking at for surgery. Who knows, maybe someone has a vacation home or mother-in-law apartment not in use.

            Comment


            • #21
              Hi Kara,
              If your surgeon is in Houston you can stay with me.....I am serious. Please let me know.
              Miss Bessie

              Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

              Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

              Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

              Comment


              • #22
                The Surgeon is in New Hampshire. (Nashua/Manchester)
                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                I also have some journals of my journeys, past and some present at:
                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                Comment


                • #23
                  I know that you know that there is no way you could possibly work in your condition. It is just one of those irrational thoughts that comes in our heads sometimes when we want to do something to help, but dont know what. But, you and I both know, working isnt it!

                  HOWEVER, AFTER your surgery and recovery, who knows?!! You may feel so much better that you actually might be able to go back to work part-time for a while and if that goes well, who knows, you may be able to go back full-time after that! It is of course, just hard to say how far reaching the PNE and VV is, until after your surgery. It may be much more far reaching than you or your Drs. ever realized. And if that's the case, you may recover and feel better afterwards than you ever dreamed possible!

                  Right now, you only have to take a minute at a time, an hour at a time, and a day at a time. I know that's what you have been doing, but that's also what you have to keep on doing until this surgery and recovery are behind you. If there are still other issues to deal with after that, then we will deal with them as they occur. But right now, you have SO much hope that you havent had for a LONG time! You have been waiting for YEARS to even get the PNE, VV, and Clitordynia d/xed, and then, waiting and waiting for this surgery. I really, truly believe that you are going to be helped more than you can even imagine by this surgery! So, please just hold on a little longer.....you are almost there!

                  I hope that the minutes, hours, and days start passing more quickly until it is time for your surgery!

                  Sending love and hugs,
                  Amy

                  P.S. Octoberfarm, that was so very nice of you to offer her a place to stay in Houston (if her surgery was there.) Not many people would do that for someone that they had never met. You really have a big heart! Though her surgery is taking place elsewhere, your offer was very kind. Though her surgeon is in NH, I think one of the other 2 Drs in the US that do this surgery IS in Houston! So, if for some reason things dont work out for NH, it is good to know that she has that option. I know we would ALL feel better knowing she was with one of "the family". Again, that was very, very nice of you to offer! Hugs to you, Amy

                  Comment


                  • #24
                    Kara, I am sorry to hear you are having such a rough time. I know you have had more than your share of troubles. It does't seem fair. I hope you start feeling better soon. I will keep you in my prayers.

                    Hang In There
                    TexasHoney
                    TexasHoney

                    Let's keep praying for a cure.
                    IC Symptoms began in early 2001
                    Divorced : Sept 2002 (Partly due to IC)
                    Diagnosed with IC in April 2004
                    Most recent injury - Rupurtured Left Achilles Tendon
                    Wed Jan 28 2009
                    (Ice Storm Accident)
                    2nd Achilles Tendon Surgery - May 28, 2009 after re-injury on May 17
                    Other Injuries
                    Broken Left Ankle - July 2004 ( fell off ladder)
                    Broken Left Ankle (Again) - May 2005 (car accident)
                    Sprained Left Ankle - November 2006 ( fell off my aunts porch on Thanksgiving Day)

                    CURRENT MEDS
                    Elmiron, Pyridium

                    Comment


                    • #25
                      Kara, I'm so sorry you are still in so much pain - you need this surgery so much, and you are so brave for pursuing it. I wish I knew someone in New Hampshire or had a place there. I feel so bad that you are having this worry about how to pay for the hotel stay, on top of everything else. I hope things will work out okay and that you won't have to work or anything or risk your disability benefits.

                      Blessings,
                      Lori

                      Comment


                      • #26
                        One door closes, another will open!
                        Love you Sandra
                        "Never Give Up."

                        To view pictures of my creative interests and Maine Coon kittens click here: http://www.flickr.com/photos/[email protected]/

                        My Photobucket Link:
                        http://s237.photobucket.com/albums/f...ramack_photos/

                        Comment


                        • #27
                          Kara

                          I feel awful for you..you must be in so much discomfort to say the least, I've had my own days where I've laid sprawled on the bed with the fan pointed my way...

                          I was looking at SS and going back to work, just their rules, b/c i am going nutz. In reality, if i sit at a desk I will be found unconcious and drooling but if I am moving I will do ok. I get so depressed b/c i have all this education but can't do anything with it. And, I'm ADHD with drug brought on narcolepsy...how's that for irony? Anyway...from my reading and what they do to encourage you to work is allow you to work (with pay) for a year without losing your benefits or medicare. After 9-12 months they cut your beni check/medicare...but if within 5 years you have any problems related to the original reason you were put on SSDI you go right back on. THAT is my understanding. Of course...the government reinterrupts stuff like an art critic at an abstract art show...one person will tell you one thing about the rule, another will tell you his interpretation. (you generally get stuck with the ****tiy interpretation..'oops bad word and bad spelling) Anyway read on the website and look at their ticket to work program...personally, that doesn't flip my dress up. the jobs look like entry level envelope licking but they are supposed to have vocational people to help you match your skills and abilities.

                          Again...sorry you hurt. Thanks for being so helpful to me. I just ache inside, as usual...husband and I got to go away for an entire 2 nights this weekend (first time in 10 years) and made up for it in, well, intimacy....lets just say I needed W-D 40 and a lot of talking between the two of us as to what our problems have been. It has been 3 years since we last tried this. I feel as if I have been riding bareback....naked. and everyonce in while a thorn got through. Not saying it was bad, but I am paying now. We went to an art show in Seattle yesterday and were going to go to the Music Experience and Pike Place Public Market (home of the original Starbucks....Every caffiene addict's holy shrine) however we've been there before...went to rest in hotel and well... left when we had to check out today. So my, uh, clitoral area has an ice pack and a fan blowing as I type, and a heating pad over my belly. Poor hubby, worries the entire time he is hurting me...if I even make a noise that slightly sounds owieish he stops.

                          Kara..You've been so kind to everyone else on this board and helpful...I guess maybe I told you about that to try to make you smile a little.. I hope i did. We are all in pain, some worse than others...you've got it bad. I can't even imagine a paper cut on my clitoris. I would be sobbing. My husband would havee to commit me. I admire your bravery and nonchalance with this!

                          Tracey
                          I.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.

                          Medications I CURRENTLY take:
                          90 mgs Ms contin (45 mgs Am/PM)
                          Percocet as needed
                          Topomax 100mg day
                          Ambien 10 mg bed
                          desipramine 25 mgs




                          If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
                          Albert Einstein

                          Comment


                          • #28
                            I know right now u feel lost due to the money end of it...and I would too. But do you belong to a church or do u have close friends???

                            I only ask cause maybe they could start a fund raiser for you. Find out how much your lodging would be and then figure in food and whatever else u would need and go from there.

                            I mean it is alot better than losing your disablility....maybe u or a friend could call the local paper.

                            It's worth a try...and if don't try then u will never know.

                            The other thing is do u have any family....or does any of your family have friends that live whereever this DR is?? I know it might be strange to stay with a stranger but if that person knows that other person and says they are good people....u might find a place to stay for free.

                            Just a thought....I would hate to see you not be able to get the help that u need.

                            Also depending on where this DR is....see if someone has a timeshare close by. If someone does then u would only have to pay for that and it can be free to very little in the price....I used to have one.

                            See if any friends have any "points" on the their credit cards and if they would get a room with their "points"

                            Those are the only ideas that I have. Sorry I don't have more.

                            Many hugs coming to u. Take care and keep us posted
                            Live your life to YOUR best, and Love to YOUR best!!!



                            DX in 03 with Shingles
                            Removal of Left ovary due to Cyst in 2005,
                            I have had cyst since I started my period as a child age 12
                            Hysterecotmy December 06
                            IC DX March 07 by PST
                            2 "rescue" instills in March 07
                            Cyco May 07 confirmed IC
                            Uro study June 07
                            1st Pain Block July 17,08
                            Hydro/Cysto Nov 11, 2008
                            12-11-08 was told I had alot of inflamation

                            Meds: Allergic to 6 things
                            Premarin......taking the gen cause I get it at Walmart for 4$$
                            Presique for my drepression :woohoo:
                            Abilify for my depression
                            Adderall ...found out I'm ADD...makes sense now
                            Kolopin for anxiety
                            Noroco for my pain
                            Valtrex for my shingles as needed

                            Sorry if my spelling is off on the meds [/FONT]


                            http://community.webshots.com/user/s...host=community

                            Comment


                            • #29
                              Kara

                              I have these exact symptoms and I am just starting lycria. Its horrible isnt it but you are not alone.

                              i have been suffering with clitodyina for 2 years now
                              x
                              Started with symptoms 2004 after a severe infection.
                              Was diagnosed with IC Feb 2006 after cystoscopy.
                              Diagnosed with vulvodyina and PN in july 2006.
                              Dignosed with ME and IBS Oct 2006.
                              Currently taking Amytriptaline 50mg, regular pain killers and birth control!
                              Also doing IC diet and regular use of heat packs.
                              Still struggling with IC and controling my symptoms so looking for some help

                              also recently had abnormal pap, CIN III and just had LEEP done 2007

                              Comment


                              • #30
                                I will take everything you all suggested in and try to find a way to do this without losing my Disability. Thank You all for caring so much about me and lending some very helpful support and ideas.

                                You are all in my heart and prayers.

                                Love and Hugs to you!

                                Kara
                                Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

                                "One hour at a time, this was NOT my American Dream but it has to work out somehow."

                                I also have some journals of my journeys, past and some present at:
                                http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

                                Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

                                Comment

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