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OK I guess this is a personal diary because although I am extremely active politically I find myself lately at point non plus specifically for personal reasons.

I have Crohn's disease and I've had a major relapse, or what I call a "spectacular crash and burn" where despite warning signals and many attempts to avert my exact situation nothing worked. Yeah, I saw the wall coming, I hit the brakes hard, even the auxiliary ones and yet SPLAT!

So I eneded up in the hospital loaded to the gills with dilaudid for pain, Prednisone for inflammation and various vile potions to get my "sewage" problems under control so that an X-ray could see inside and give my doctors a better idea of why yet again I found myself in a place that I hated.

I don't hate the hospital because it has no purpose. I'm a nurse and generally I prefer to be on the opposite side of the stretcher helping those that need it. I really hate being on the side of the stretcher needing that assistance. No, more than that it is difficult for me to admit I need help, never mind actually taking it.

But this visit I determined that I would behave. I would be the patient. I would listen to the doctors and nurses rather than argue with them about the details of my treatment. Well it worked! Kinda, sorta but mostly except when they decided (in the absence of my GI doctor- who had the nerve to be off for Memorial Day!) to stop my Humira.

What is Humira? And why would they stop a main part of successfully keeping me in remission for years. Let me explain: there is a class of drugs called biologics including enbrel ,Remicade , and Humira.

They all have one aspect in common they are anti-tumor necrosis factor blockers. Because of my Crohn's disease, as well as my Rhuematoid arthritis, I have too much circulating tumor necrosis factor. So what the heck is that when it's at home. The simplest answer is that it is part of a normal response that your immune system, in this case your lympohocytes produces to keep you from developing tumors and other assorted health disasters. Cytokines are normal proteins that assist in this process.
Tumor necrosis factor alpha.

So what's the problem? Well in the case of someone (moi) in the throes of an auto-immune disease such as Chrohn's, Rheumatoid Arthritis, Lupus, psoriatic arthritis, Reiter's syndrome etc... we all have too damn much circulating TNF factor and it attacks our joints, our GI tracts, our eyes and our skin - believing that we are the enemy. These cytokines leave much damage in their wake.

An overly hyped ctyokine response was responsible for many of the deaths in 1918 from the Spanish flu pandemic and a "cytokine storm" or a severe immune reaction to the unknown quantity of new virus did its damage before science had quite caught up with it yet. It did of course, and this is how life has changed from someone who lived on high doses of Prednisone and a combination of low level chemotherapy using Methotrexate, a drug used in high doses for certain cancers and given IV on a protocol. I take it weekly orally, at a dose of 15 milligrams because it is thought of as a "bridge" drug between the biologics I take, and as they lose effectiveness over time the MTX provides some coverage until the next dose. That's right the drugs like Humira etc...are only effective for varying amounts of weeks before your immune system goes right back to producing still more tumor necrosis factor. Blech! So some are taken at home subcutaneously and some are given IV over several hours - the doctor and your response determines which one you use.

I used to have a Remicade party at my Rheumatologists every 6 weeks with people in a similar position as I, most had straight up RA, others had psoriatic arthritis etc...but we were all there in our lounge chairs for 3 hours with blankets ( it can make you pretty cold and sleepy) and we brought our lunches and chatted on diverse topics often cheering on the newbies who were unsure if this would even help them. It was great and Remicade gave me my life back. I exchanged three hours of time ( and some down time later at home) for a pretty much symptom free six weeks, and best of all no Prednisone!

So what happened? Well, Remicade was a fairly new agent in 2000, not widely prescribed because the patient had to meet many criteria to get insurance or Medicare approval. But I met the criteria and so I was put on a regimen that eventually worked very well for me. BUT...Remicade is a chimerical drug made up of part of mouse DNA and part human DNA. My doctor worried about this, but I hushed him because I was fine, I was doing well ...why worry?

Indeed. In 2008 the whole party came screeching to a halt and before I could even say "Oh, Noes," I had crashed and burned. Nausea returned full bore, I was fatigued, my abdomen swelled to a convincing 6 months or so pregnancy belly. And I was placed on high dose steroids in an attempt to avoid the hospital.

So follow me over the fleur de kos for the rest of my journey.

I have often supplemented all of these medications and doctor visits with managing stress.  Part of that management is that I go to a great acupuncturist who keeps me in balance, along with a bodyworks therapist who does massage but also visualizing stressors and helping me plan a better response to the everyday little annoyances that inevitably fill your life when you have young kids and a busy life( or whatever else). Guided imagery with Belleruth Naperstek has helped me immeasrurably getting to sleep, letting pain go, and general immune system affirmations.

I'm not linking to her because I think that's up to other people whether they believe in, or are comfortable with, other avenues. My insurance pays for the acupuncture but for none of the other things I do that is not medicine related. If anyone is interested in the comments I will supply that information for you.

So I was once again admitted to my hospital and tests were re-done. To make a long story short, I was now "immune" or had built up antibodies to the mouse part of Remicade. The party was over. I was switched to Humira SQ, once a week and very slowly I began to come out of relapse. But not soon enough, not before I had lost all my hair except for a few wisps, and my toenails and fingernails. Oh and I grew a beard! The Prednisone had caused me to gain 35 pounds! Along with the other symptoms this was a very low point for me. Eventually the Humira began to help, I had my beauty parlor wax my beard off - nice moustache as well! Eventually my hair grew back and I've kept it pretty layered and short since that. The nails grew back, but it's the kind of thing that you really never forget. I told my Rheumatologist that I looked like a middle-aged man with a beer belly.  I think he laughed, but I kind of meant it. The Prednisone alone gives you this rounded "moon face."

The biggest challenge however was getting insurance approval for weekly injections instead of every other week. They refused it twice even though my GI doctor and my Rheumatologist wanted it. So What? pretty much summed up their response. It took a lot of writing.

So in 2010 back to the hospital I went for another extravaganza of "roto rotoring", CT scans, ultra sounds and vile potions to drink. Of course the diagnosis was the same: Crohn's disease and Rheumatoid Arthritis. Recommended treatment : Humira 40 mg Subq every week. So this time the insurance company gave in - with ill grace but gave in nevertheless. My Senator Barb Mikulski helped by sending a letter of inquiry to Blue Cross.

So i was set, or at least I was until April when I hit that wall and I'm still not back yet. When I say I try to manage my stress I lied. There is just some stress that you don't plan for and you don't see coming. Oh I was stressed, I had just been through the second year of college applications this time for my son. SAT's, ACT's, common apps once again became my life, campus visits, you name it. So I was feeling sorry for myself about my upcoming empty nest syndrome. Well, while I was looking one way trying to plan what to do, something really bad happened,

My 18 month old Lab Jenny got her collar caught on my 6 month old Labs collar and my son who was alone at the time could not separate the collars in time. So Jenny died in his arms and Lily barely made it. I came around the corner and tried to resuscitate Jenny but it was too late.

I am grieving as is Philip and we try to support each other but I've had him to a grief counselor and he is working through it. Aside from my own shock and grief I just could not deal physically with my feelings and so I relapsed. I tried to hobble around with it, trying to rest, trying to convince myself that this wasn't bad enough for a relapse.

But it was, and so yes, I ended up in the Hospital feeling a failure again. I needed pain meds, hydration, rest and a plan. A Plan how not to do this again. My GI doctor told me point blank that I wasn't taking care of myself. That I needed two days every month to do a cleanse and that if my family couldn't give me that time, then I needed to check into a hotel and do it that way. Otherwise, I was going to keep this up and we were going to have to keep meeting this way. I respect him very much and he's right so I promised him I would. The payback was that I had to drink a gallon of this vile Miralax in order to give him a clear enough X-ray or I wasn't going home. So I drank the whole thing, one of the more hideous experiences of my life!

So at the moment, I am working sort of from my laptop at my own pace. My employers understand, they want me back so they're giving me time.

My idea or main reason for publishing this now, is that I know quite a few people who are having health issues where the reasons aren't clear or the struggle is day in, day out and its success is questionable. I wanted to give "us" a place to discuss these things, ask questions or just plain grouch about what a horror life has been lately. Despite the added misery of seeing Mitt Romney and pictures of him in his Mom jeans.

I have one thing to add, two very kind kossacks gave me great help, both concerning the extreme nausea that was sapping my will to live:

Both are Rescue Rangers, as am I, so they heard me whining about my nausea and they jumped in with some wonderful advice:

The first one instructed me to get sublingual zofran (Odnesatron) it's an H2 agonist and is not mood altering, it just lifts the nausea. IV works great but you need a hospital for that, the oral  dose does nothing for me. So I tried the sublingual and there was sweet relief. Best thing my doctors have no problems prescribing it since it's not addictive. You have to have your fun somewhere and this is pathetically one of mine.

The last is a simplistic recipe for bread pudding given to me by a brave woman who has suffered cancer and all the debilitating nauseau that chemotherapy can throw at you.

The key here is those needing it, can't cook for ourselves, the thought of food repels us and yet we need nourishment. My 19 year old daughter has made it for me three times and each time she gets better at it. She is quite proud that she is helping her Mom through this rough patch. So here goes:

And, with no more ado, the bread pudding recipe:

Old Fashioned Bread Pudding


1 package (4-serving size) Jello Vanilla Pudding Mix (not instant--you want the kind that you cook)
1/4 cup sugar
3 cups milk
1/4 cup raisins
2 Tbsp. grated lemon rind (optional)
1 Tbsp. butter
1/2 tsp. vanilla
6 slices (or more) cubed bread, dry.
1/4 tsp. cinnamon
1/8 tsp. nutmeg

Combine pudding mix and 2 Tbsp. sugar.  Add 2 cups milk, blend well.  Add raisins and lemon rind.  Cook and stir over medium heat to a full boil.
Remove from heat, stir in butter and vanilla.  Set aside.

In a medium bowl, pour remaining 1 cup milk over bread cubes to moisten.  Stir into the pudding mix.
Pour the whole mess into a 1 quart baking dish.  Combine remaining sugar and spices.  Sprinkle over pudding.
Run under the broiler until the sugar/spice mix is browned and bubbly (around 4 minutes)

Serve warm.  Extra good with heavy cream, and damn the calories!

That is the recipe as I received it.  Here are my personal changes:

*I don't add the lemon rind usually, although it provides a nice flavor twist (good for when you're not queasy)
*I also use a half-cup or more raisins.
*The choice of bread is important.  My best results have come from dried French bread--it holds up to the pudding better and provides a satisfying substantiality to an otherwise soft food.  I usually add more than the measly 6 slices.  My great-aunt used to use stale cake in hers, but we never have cake long enough to let it go stale.

Usually I eschew mixes--cake, pudding, or otherwise.  This is the one recipe I'll use a mix for.  It always turns out well.

This particular bread pudding probably saved me from IV nutrition, and after the bone marrow transplant, it was the way I worked my hyper-nauseated system back to accepting food.  So there's a therapeutic component to my advocating this recipe.

For those of you in crisis I wish you peace and love. To those of you in pain, I can stand with you and I can listen. To those of you who are in an undiagnosed hell - just hang in there and persist.
Tomorrow will be kinder.

Originally posted to vcmvo2 on Fri Jun 22, 2012 at 10:59 AM PDT.

Also republished by Community Fundraisers and PWB Peeps.


How many of you have a chronic illness?

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15%6 votes
27%11 votes
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| 40 votes | Vote | Results

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Comment Preferences

  •  Regarding acupuncture, (10+ / 0-)

    how did you go about finding one?  Actually, finding them is easy, how did you decide on this particular one?  Mrs grog is still casting about for some additional pain management help vis a vis her two lower back surgeries and blown discs.

    Your story comes at a convenient time giving the anticipation/dread over the Soooopremes and the ACA.  I mean clearly you have not only good health insurance but a job that's provided you with the flexibility to "be ill".  I shudder to think about someone in a similar situation to yours with no or lousy health coverage.

    "I'm not writing to make conservatives happy. I want them to hate my opinions. I'm not interested in debating them. I want to stop them." - Steve Gilliard

    by grog on Fri Jun 22, 2012 at 11:14:40 AM PDT

    •  OK the acupuncturist (6+ / 0-)

      Came highly recommended from several medical sources and the holistic health center where I get a massage referred to her. The medical sources where my rheumatologist ( they I think are the most open to alternate pain management) and also an excellent physical therapist in town who helped me rehab a blown disc.

      Someone pulled a chair out from underneath me and I hit the floor hard.

      The health insurance is from my husband's job. He has 19 employees and one of the things that he has always insisted on is that they have good health benefits, time off for caring for a new baby or sick parents. He gives them dental insurance and a bunch of other benefits. And he covers for them when they are sick or having problems. He's an ideal employer but it usually means he's not here when I'm sick. So there is that.

      I work PT as a fundraiser for the Hospital here and the community college. They don't pay me so I think it's nice that they don't whine.

      I shudder all the time about people here who have no insurance or non-understanding employers. One of the best things that I helped fund is an "Access Carroll" program staffed entirely by volunteer doctors and nurses to take care of the uninsured. No questions asked. We started out on a shoe string but we've had to open new and larger quarters because it has been such a success and so well- supported here.

      But don't have your wife go to any acupuncturist. I'll ask mine how to get a ref in your area.

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 11:31:56 AM PDT

      [ Parent ]

  •  Your diary reminds me of the wise words of my (14+ / 0-)

    grandmother, who lived to the ripe old age of 94 despite a host of bizarre and never-diagnosed ailments. She would admonish us: "Never go to the doctor until you are absolutely certain what's wrong with you"

    and she was married to a brilliant neurosurgeon (who just happened to have a PhD in Greek Philosophy as well!)

    Diagnosis is so crucial, and in this age of overspecialization, something that doesn't seem to have enough academic and research focus.

    I send every good wish your way for those in whose care you find yourself to dig deep within themselves and bring their "A" game to your diagnosis, care, and follow-up treatment. Thank you for taking the time to share your story with us.

    Some drink deeply from the river of knowledge. Others only gargle. -- Woody Allen

    by cassandracarolina on Fri Jun 22, 2012 at 11:21:36 AM PDT

  •  Thanks for this Vicky (11+ / 0-)

    I knew how sick you were but the details make it so much more powerful.  I'm glad you're on the mend.

    "What the cynics fail to understand is that the ground has shifted beneath them"

    by ItsJessMe on Fri Jun 22, 2012 at 11:23:45 AM PDT

  •  wow, what a journey! (7+ / 0-)

    and it's great of you to share this for all of us.  i have been tweeting and facebooking this diary.  

    kindness - wee mama has it right.  

    hugs and stuff, and hooray for your daughter for feeding you!  

  •  ((((((vcmvo2 )))))) (5+ / 0-)

    Thank you for sharing this important information & blessings to you, my friend.

    "For what profit a man, if he gain the world, but has to pay taxes on it?" -ontheleftcoast, The Book of Paul

    by MsGrin on Fri Jun 22, 2012 at 11:45:37 AM PDT

    •  right back atchya! (4+ / 0-)


      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 11:51:44 AM PDT

      [ Parent ]

      •  We had Chronic Tonic going for a couple years (6+ / 0-)

        ...for exactly this sort of sharing.  You've written so beautifully about your experience.  I believe a great deal of healing comes from opening up about the experience and having others around who hear and can relate.

        I'll go ahead and link Belleruth Naperstack's page here since she's fabulous... I've heard her speak and I've long studied imagery and hypnosis for healing.

        My only critique is of your poll... there are tons of us flailing around who go for years without getting a diagnosis, fixable or unfixable.  In my case, I was thrown in the 'depression' pile and sent to two years of medical trials with SSRIs... funny, but they didn't help, which made sense when a bacterial infection in my central nervous system and brain was finally suspected and I was tested (yes, for those who note this sort of thing, by a CDC-standard for Lyme disease and several co-infections).

        Of course I'm grateful for your sharing in general and I wish you the very best, but I am also grateful for those who will read this and find encouragement and seek their own voice in their healing.  Your speaking up encourages others.  ;-)

        "For what profit a man, if he gain the world, but has to pay taxes on it?" -ontheleftcoast, The Book of Paul

        by MsGrin on Fri Jun 22, 2012 at 12:05:57 PM PDT

        [ Parent ]

        •  yes Chronic Tonic (4+ / 0-)

          i felt more home there than i do in kosability diaries.  

        •  Ooh thank you! (4+ / 0-)

          Belleruth has given me the courage to speak my own truth when I wanted to say, "Why yes of course even though I have horrible abdominal pain, of course it's all in my head."

          I went the SSRI route, the toughing it out, the we can't find a cause so we'll call it Lactose Intolerance etc... ad infinitum.

          It was until I met my current Rheumatologist in 1998 and after listening to my medical history for an hour, looked up at me and "said I know what you have. You have HLAB27+ which causes you to have Chrohn's disease and RA, you also have arthritis in your hips."

          I was amazed! But I said, "yeah right, I bet I don't and another thing of all the joints that  hurt my hips are the only things that don't bother me!"

          So snotty but he was 100% right and he was responsible for putting me on the proper course. One of the best things about him is that he really listened to me!

          In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

          by vcmvo2 on Fri Jun 22, 2012 at 12:22:30 PM PDT

          [ Parent ]

  •  Please take care of yourself (6+ / 0-)

    Nothing much else really matters.

    I hope that the quality of debate will improve,
    but I fear we will remain Democrats.

    by twigg on Fri Jun 22, 2012 at 12:19:50 PM PDT

  •  best to you (5+ / 0-)

    I hadn't been on the site for literally years - too burned out to come back.  But, I came and your diary touched me.  We are going through my husband's chemo treatment for chronic leukemia.  We are exhausted, terrified, etc.  It isn't easy.  You shared so well all the challenges involved.  Even your tragedy with your dogs.  Two days before my husband's chemo started our vet opened our young cat to investigate a mass in her abdomen and discovered she has an uncommon genetic disease, severe polycystic kidney disease, and probably has weeks to live.  (7 weeks so far.)  We mourn her while we try not to think too much of my husband's mortality.

    All our best to you and may you recover quickly.

    Distrust all unreasoning fanatics - even those who agree with you

    by Anti Fanatic on Fri Jun 22, 2012 at 12:29:36 PM PDT

    •  argh, PKD! (2+ / 0-)
      Recommended by:
      vcmvo2, watercarrier4diogenes

      Didn't know there is a feline version.

      "For what profit a man, if he gain the world, but has to pay taxes on it?" -ontheleftcoast, The Book of Paul

      by MsGrin on Fri Jun 22, 2012 at 12:33:54 PM PDT

      [ Parent ]

      •  Yes, cats as well (3+ / 0-)
        Recommended by:
        vcmvo2, MsGrin, watercarrier4diogenes

        I remember when I read up on it that I found lots of material on the human variety of PKD.  It's certainly nasty, whatever species.

        Distrust all unreasoning fanatics - even those who agree with you

        by Anti Fanatic on Fri Jun 22, 2012 at 12:38:39 PM PDT

        [ Parent ]

        •  ... (1+ / 0-)
          Recommended by:

          I've been diagnosed with it, but I'm skeptical it's what I have - there's no family history and my renal situation has improved (from its low point) which is pretty much unheard of with PKD.

          "For what profit a man, if he gain the world, but has to pay taxes on it?" -ontheleftcoast, The Book of Paul

          by MsGrin on Fri Jun 22, 2012 at 01:13:35 PM PDT

          [ Parent ]

          •  I have no experience with the human variety (2+ / 0-)
            Recommended by:
            vcmvo2, watercarrier4diogenes

            All I have done is read about it online.  On the cat, I can feel her massively enlarged kidneys, like a tennis ball in her abdomen.  I have seen the pictures of what the vet found - kidneys full of visible cysts - and the liver function tests show some decreased function.  I'm not sure of the diagnostic tests for humans - there were none for felines until UC Davis developed one very recently.  For felines there are some things which can relieve the stress on the kidneys and result in slowing the effects, although the cysts remain.  Sometimes the cysts are so slow growing there is never really an effect.  Sometimes they grow rapidly - seems to be random luck of the draw.  

            As others have written in the posts to this diary, the diagnosis is often the hardest thing.  Whether your doctor is correct or not - who knows?  And until the diagnosis is correct, it's just dumb luck if you get the right treatment.  Good luck to you.

            Distrust all unreasoning fanatics - even those who agree with you

            by Anti Fanatic on Fri Jun 22, 2012 at 02:32:30 PM PDT

            [ Parent ]

    •  I am so sorry! (3+ / 0-)

      It is just such a nightmare. Your husband has enough to deal with as do you with the caretaking, but the kitty as well?

      Please look up at the Belleruth Naperstek link, she deals with chemo, PTSD, grief and her wisdom has never failed me.

      You can download it now to your mp3 player as opposed to waiting for the CD! There is one called betrayal, abandoment and heartbreak that I am using now that really has helped me at least express feelings that were just too hard. The whole tragedy with my dearly beloved Jenny is just so hard to explain to others.

      And listen to the that song "tomorrow will be kinder" do what ever you need to do, however you and your husband need to do it. Most people won't understand but it's what you understand and what you need that's important. email me anytime. It's in my profile or kosmail me. Let me know how your kitty manages. Peace.

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 12:44:27 PM PDT

      [ Parent ]

    •  Anti Fanatic, you may want to check out (3+ / 0-)

      the group at the Monday Night Cancer Club (right here on Kos--just hang around on Monday evening and join in).  This week's official subject is going to be about caregivers, but really its an open thread for sharing information, resources, and great shoulders to pat or cry on, as the case may be.

      Best of luck to you and your husband.  Chronic cancer can wear you down and wipe you out, and mortality--human or feline--can be hard.

      "I speak the truth, not as much as I would, but as much as I dare, and I dare a little the more, as I grow older." --Montaigne

      by DrLori on Fri Jun 22, 2012 at 05:17:24 PM PDT

      [ Parent ]

  •  Well, I feel a little bit of your pain. (4+ / 0-)

    I don't have Crohns, but I have Colitis.  I've been on and off of steroids, and luckily right now I'm in remission.  I also have Psoriasis, and have had some of the arthritis in my thumbs.  By some miracle the arthritis left me about 5 years ago, and hasn't returned.  I've also had a herniated disc and two surgeries to my spine.  Why two?  Well, because the doctor didn't get it all out the first time.  I was in bed 7 months for that.  Actually, right now I'm feeling pretty good, and keeping my fingers crossed.
    You've had a really tough time of it, and I wish you all the best.

    I am a work in progress. Still.

    by broths on Fri Jun 22, 2012 at 12:56:31 PM PDT

    •  Actually colitis (3+ / 0-)

      is now being accepted as treatable like Crohn's - a flip side of the same coin. For instance my problem generally is on my right lower side near the Large Intestine but I had my appendix out because it was retrocecal. Now I have adhesions from an obstruction 10 years ago. I also had a temporary colostomy because of it.

      Ulcerative colitis is generally a small intestine inflammation.  But really they seem to be mirrors of a very similar disorder.

      If you ever need to get your blood checked just have them add on a check for HLAB27, if you're positive it may explain a lot - my Dad had Psoriasis and eye inflammations. He was HLAB27+. It's not an expensive add on test. It's just routine.

      And your spine may be related. Colitis is considered one of the ankylosing arthospondyleses especially when psoriasis is connected to it. Let me grab a link for you.

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 01:23:49 PM PDT

      [ Parent ]

    •  One link from the NIH (3+ / 0-)

      Colitis and sacroiliitis.

      Ulcerative colitis

      It's all part of Inflammatory Bowel Disease, and it is just such a mixed bag. See what you think.

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 01:33:23 PM PDT

      [ Parent ]

  •  Thank you for sharing your hard earned wisdom. (3+ / 0-)

    Wouldn't it be nice if those of us living with chronic health challenges could relapse into being well!

    My best wishes for a speedy return to good health.

    Love is the lasting legacy of our lives

    by princesspat on Fri Jun 22, 2012 at 01:17:02 PM PDT

  •  holy hell, vcmvo2 (5+ / 0-)

    That's a ton of hurt, and you're a hell of a woman for troopering through it (and for those of you on the outside, she's one of the two or three people who keeps the madhouse of Community Spotlight running smoothly.) My grandmother has pretty bad Crohns, but she also has my parents living with her, so she can focus on taking care of herself instead of family, kids, etc. Nothing like all this. You are awesome.

    Saint, n. A dead sinner revised and edited. - Ambrose Bierce

    by pico on Fri Jun 22, 2012 at 01:22:55 PM PDT

  •  Beautiful diary (3+ / 0-)

    I admire your willingness and ability to "walk" with your illness.

    Coming from a sickly bunch of people with multiple chronic illnesses, including rheumatoid arthritis, I have some understanding of what you're going through. I consider myself extremely lucky for my good health.

    Much peace and love to you, and thank you for this.

  •  I'm so glad you made yourself write (3+ / 0-)

    about what you've been going through.  The only Chohn's patients I've ever known were either extraordinarily reticent about their symptoms or had light cases.  I knew a little of what you've been enduring, but didn't have good grasp of the full range of awfulness.  

    You're amazing.

    Your adventures with prednisone made me smile at the memories of a summer I spent essentially in the hospital, between courses of taxol and cytoxin, along with massive prednisone injections that made my student assistant, who brought me some work, go back to my dept. and say, "I think they're feeding her too much."

    "I speak the truth, not as much as I would, but as much as I dare, and I dare a little the more, as I grow older." --Montaigne

    by DrLori on Fri Jun 22, 2012 at 05:24:18 PM PDT

    •  Well it's such an icky subject (1+ / 0-)
      Recommended by:

      grog gave me the words "sewage problems" Heh!

      But you lady, you inspire me everyday. You fight your cancer and recurrence with such courage that it gave me strength when I just found I wanted to whine and cower in a corner somewhere.

      And that bread pudding, a real lifesaver.

      That's funny with the prednisone IV injections. Whenever I have them I'm like "ut oh, here it comes. I bloat up faster than a sinking ship."

      I once had an exchange with a ride operator at a fair when my kids were younger. Philip wanted to go on a ride but he was too young that he needed me to go with him. But the ride operator said, "Hey Lady, I'm sorry but pregnant ladies aren't allowed on this ride. " I replied, "I'm not pregnant." He said, "Hey it's OK if you're pregnant but you can't go on this ride!"

      Well, I drew myself up to my full 5 foot height and I said, "Listen Pal I am not pregnant, I am just fat!" To which he replied, "Oh well if you're just fat go ahead and get on. " So I did. Gave me a moment of real levity. My son was mortified though, "he said Mommy you are not fat!"

      I love that kid! :)

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Fri Jun 22, 2012 at 09:13:15 PM PDT

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  •  You have my enormous sympathy and hugs. (1+ / 0-)
    Recommended by:

    I've had to take Prednisone twice for allergic rashes when normal antihistamines (I live on them) failed.It wasn't just a few hives. My hives merged so I looked like I had either a bad, swollen sunburn or the Plague It is nasty stuff.  My reaction to it is to get nauseated, bitchy as hell and not  sleep for the first couple of days.  Luckily, it was short-term.
    I also get steroid shots several tiems here during the GA summer--I am allergic, as the Hopkins specialist put it, to grass and trees, everything green that grows ont he Eastern seaboard (now enlarged to include the Pacific RIm after 7 years in Japan).

    That's my worst problem, and it's livable with.  That and a mild scoliosis and facet joint syndrome, where my back spasms, and hyperextension of my ankle ligaments and thanks to the allergies, chronic sinusitis. I am soooooo lucky it's nothing worse!

    The last time we mixed religion and politics people got burned at the stake.

    by irishwitch on Sat Jun 23, 2012 at 12:06:57 PM PDT

    •  Thanks for your kind wishes (0+ / 0-)

      But you sound like you have been through the wringer yourself! I have regular allergies but I have known people who just live in hell with all the symptoms.

      Prednisone can help and when you need it, well what else is there that works so well? but it comes at a steep price.

      I was once so hyped on it that my husband found me dusting the bookshelves at 3AM! Something I don't usually find a compelling activity. He was not amused!

      I don't know iw but that scoliosis and facet joint syndrome sounds pretty bad to me. I hope you can find some help - acupuncture may help you at least as an adjunct to whatever else you do. This allergy season has been really bad according to several friends. I hope it gets better.

      In our sleep, pain which cannot forget falls drop by drop upon the heart until, in our own despair, comes wisdom through the awful grace of God ~RFK

      by vcmvo2 on Sat Jun 23, 2012 at 08:30:09 PM PDT

      [ Parent ]

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