wings and things


on March 23, 2014

I have now tried every ointment, drug, vitamin, doctor, prayer etc. to no avail, so this week I will see a dermatologist for the first time. In a state of unblissedness today (when I woke up to see my hands still peeling and feeling sore), I solicited the help of my mother and Ming to visit Anthony so that I could do some serious research into what has become a chronic condition for me – pompholyx.

There is nothing like an unexpected disease to increase one’s vocabulary, research abilities, and empathy. One thing for sure is that I am a hell of a lot more knowledgeable tonight than I was this morning – and actually very reassured that it is not just me.

You see, the desquamation (peeling) of my hands is apparently the last phase of the pompholyx cycle, and the liquenification (bloody scabs caused by victim scratching), is also part of the last phase. Which means I am in the last phase for the third time.

How on earth do people with chronic illnesses, chronic pain, and chronic grief, continue on into every newly painful day?

65 responses to “Unblissed

  1. Julie this may or may not help. But a friend of mine has a friend who’s hands were doing the same thing for YEARS. She was given creams, antibiotic soaps and cleaners, neosporin, etc… Turns out…she was having an allergic reaction. TO ANTIBIOTIC SOAPS, HAND SANITIZERS….etc. Everything they were giving her because of how her hands looked, she was allergic too! Fortunately ONE doctor saw this and figured out the problem. I hope this dermatologist can help you.

  2. mimijk says:

    You know how people get through – you do it yourself, every day. I’m glad you’re seeing a dermatologist and hopeful that some options will be provided to make your hands better and yo can get back to bliss.

  3. Vicki (from Victoria A Photography) says:

    So sorry to hear your hands are still a problem, Julie. It must be so hard not being able to do all your usual routine, let alone things like washing your hair etc. Don’t suppose some of it might be due to Stress?

    Did you ever try the Bach Rescue Remedy cream I suggested? Or even dilute some lavender oil in some vitamin E cream and smear it all over your hands and puts some light cotton gloves on to keep the cream from rubbing off overnight?

    People with chronic illness either learn to accept it OR spend the rest of their life in a stage of anger, frustration; and constant anxiety. I’m not suggesting you accept this pompholyx as it’s a damn nuisance not being able to use your hands.

    I never learned to deal with my chronic pain until I quit my 16 1/2 yr job (which I’d grown to hate). Part of my problem was lack of time & freedom to go for a walk when my back, wrists, arms, shoulders & neck hurt. I had to sit at my desk and try to work. And …..I was only getting 2-3 hours of sleep due to lying awake in terrible pain every night, so I was constantly exhausted. Now, in enforced retirement, I go to bed late (which is not good), BUT I sleep in, or stay in bed, until I feel fully rested in the morning. I had to get up early this morning as my Father was coming over for lunch and I was nearly falling over and bumping into furniture due to fatigue. I couldn’t even think straight and ended up having a second cup of strong black coffee before lunch to be able to spend a few hours talking and listening this afternoon. Of course now, I won’t get to sleep tonight for ages (because of that second shot of caffeine). But that doesn’t matter as I don’t have to get up early tomorrow.

    • jmgoyder says:

      Thank you so much for this Victoria – I will read it properly tomorrow but please know how much I appreciate your input here. I am so down tonight but will rally tomorrow because you and other friends inspire me. Jxxx

  4. So sorry to hear your hands are once again peeling and scabbing — and I’m glad to read you’re going to a dermatologist. I think our bodies speak to us — and perhaps your hands are reminding you to take care of you — that you have been lifting a heavy, heavy load and need to give yourself the same grace you give to others?

    That said — going to the dermatologist is a great step in giving yourself the medicine you give to others — care, love, attention.

    Hugs — hope you get some relief my friend.

  5. Rhonda says:

    If I may…one thing I struggled with when I dealt with chronic pain (back) was depression. Another thing I noticed when the pain was under control and manageable, was the lack of depression. So have hope that when the derma doc finally helps you get this under control…you’ll see results in more than just your hands. Then you can recapture your bliss in the things you love about your everyday life…and you’ll cry when you want to or need to…no more sucker punching you every time you turn around. This type of depression doesn’t need a pill…it needs relief. finger’s crossed this doc will be the answer..xo

  6. I am sending you positive energy as always Jules 🙂 From what I have read, stress is a major factor in pomphlox; so I am hoping that the dermatologist will give you something to ease the symptoms and then you can concentrate on yourself and enjoying your bliss in your beautiful new writing room. I know that your life is complicated right now, but the most important thing for you now is to get your hands back on track so that you can enjoy and get the most out of your new private work area called the room of blissful writing. I think that if you have that small piece of personal space, the rest will become much easier. BIG HUGS 🙂

  7. FlaHam says:

    Julie, for me I just push on. Sometimes it gets to me, but usually I start the day grateful that I started the day. As the day progresses I look forward to the things that make me smile, and tend not to worry about long term BS. Short term setbacks I deal accordingly. The crap that has got you is going away, soon you will be your old self again. Just look and find that one victory each day, that one moment that makes you smile no matter what else has gone on. I am sure with a little effort you will see what I mean. Please take care, Bill, also remember if your really down, just think of me as the Pillsbury Doughboy, that’s got to be good for at least one chuckle. XOX

  8. What a powerful question Julie! Is it hope? A strong will to overcome? Having worked with some of the most vulnerable people in community, I’ve always been blown away by the strength and resilience of the human spirit.
    Diana xo

  9. I hope the dermatologist has a remedy for this, Julie. Wishing you well.

  10. susanpoozan says:

    Perhaps this final phase for the third time will turn out to be third time lucky so there won’t be a fourth time.

  11. Just like you do Julie, one day at a time

  12. Good for you going to derma doc, hope and pray he can help you gain control over this nasty stuff. Those who suffer daily Julie just keep putting one foot in front of the other with strength and hope, life throws many things at us chronic pain, grief suffering, mental depression and physical ailments but without hope and faith in something greater and for me a greater being …God… I could not go on. I pray you can attain the peace and health you so richly deserve.

  13. Judy says:

    I want to say something comforting. I can only tell you that I had a form of psoraisis that were on my arms – itchy, scaly, and unending. It came on during a crisis with my autistic son and wouldn’t heal or go away. I tried many remedies, but a dermatologist finally gave me a certain ointment that caused the condtion to retreat. I’m certain you’ll get a cortisone based ointment – but I had tried several before one worked. So don’t give up hope. You are on the right path to relief and it will be behind you one day. It is so horrible to be tormented by a condition when you are at such a low point. I am holding your hand, Julie (and not squeezing!)

  14. So sorry to hear it’s flared up again. About your question, I’ve lived with Lyme Disease for the last 10+ years. It’s finally calmed down enough that I only have a couple of relapses during the year. It’s one foot in front of the other and doing my best to keep a good attitude, (focus on gratitude when rashes, meningitis, cardiac stuff, etc. kicks in). But, advice is cheap and your/my experience is going to be what it is. Just have to ride it out. It’ll change.

    Has a scraping or skin biopsy (bx) been done to be sure that’s what it is? We had a secretary in the ER I worked in whose daughter had a rash. All the bright UCLA ER teaching docs diagnosed it differently. The bx from the derm doc showed a disseminated fungal infection which was then properly treated and resolved. Colleen also makes a good point because if it’s a allergic reaction or autoimmune reaction causing the problem in the first place and a hyper-immune response has been launched then anything put on your hands may create an exacerbation and something internal taken (prednisone, medrol dose pack, etc.) can better calm it down.

    Sending good thoughts that it does get resolved.

    • jmgoyder says:

      I had no idea what you had gone through – thank you for telling me, Paulette. I see dermatologist in 2 weeks who will hopefully do all of the above. xxx

      • I’m only just recently starting to open up about my own personal stuff. That’s been a challenge for me. Yours, so open and authentic, has helped me feel a little safer to do so. Lot involved in my personal discomfort but I’m not here to hog your post. I feel lucky for our connection. You, with all you’re going through, are an inspiration for me.

        Wish you didn’t have to wait two weeks to see the dermatologist. Sure do hope it calms down and a permanent resolution is found.


      • jmgoyder says:

        Sometimes I feel embarrassed at how much I reveal – thanks Paulette xxx

      • Believe me, I understand. I share a word and get a nervous stomach. There’s no escaping human emotions and reactions.They sure whack us about! But, trust me when I say this, your sharing–every word, emotion, cringe–just makes me like you all the more. And, feel a little bit more okay to feel what I do. Now to exercise a bit more courage.

  15. ksbeth says:

    here’s hoping you find relief very soon, jules. )

  16. janeslog says:

    Have you tried Witch Hazel?

  17. I “liked” your post, but not your suffering! I hope you get relief very soon. x

  18. My Heartsong says:

    Good question – i am amazed at some people’s struggles and tenacity.

  19. Julie, is this something that you did not previously have? Is it an allergy or sensitivity to something? is there any new soap, hairspray, bag that you carry often, handle that you touch, that you may have become sensitive too? Have you tried wearing only cotton and washing only in pure soap? Are there any dietary things that you have introduced in recent months? In particular the summer fruits are notorious for triggering or aggravating eczema-type conditions.
    I did much research in food and food sensitivities, in years gone by. It began when my own son was ill as a child but grew from there. The best place to go / get advice in Australia is the Royal Prince Alfred Hospital in Sydney, allergy clinic. They are a long way away but if you contacted them, they may be able to recommend an allergist / dietitian in your area who is conversant in their research.

    • jmgoyder says:

      Thank you, Elizabeth, for these wonderful suggestions. I have tried many of these and am avoiding all soap etc. (so I now stink!) – can’t wait for the dermatology apptmt – argh!

  20. Terry says:

    I am hoping this is the final phase for the final time

  21. dan4kent says:

    Pulling for you and your quest for relief. Please keep putting one foot in front of the other. The place you need to be will find you. Stay true. We’re counting on you. Dan

  22. I understand the ‘researching’ …. I have done so much of that in the past few months… and since the doctors seem to be having trouble with the diagnosis… I even sent a letter ..(the specialist) some suggestions for testing…… it’s a bit of a story BUT.. he is doing some extra testing … I think you’re right to do it Julie because when you go you’ll be well versed in the condition you have and can ask questions… lots of questions!…. Diane

  23. Even though I liked this post I do not like that your hands are giving you so much pain and problems I hope you find some answers soon and they improve

  24. Hope your hands (and foot) feel better soon!

  25. They just do, because they have to. But it does wear them down.

    Hope you never have to find out xxx

  26. Sending you thoughts of bliss and healing!

  27. some of us prepare ourselves with the knowledge of the cycle and when we will find relief again:) i am sending big hugs and love to you my friend

  28. URL says:

    … [Trackback]

    […] Read More here: […]

  29. Around here chronic pain is relieved by Vicodin, Percocet, or four 200mg tablets of Ibuprofen (prescription strength). Sending you positive thoughts and get well wishes.

  30. viveka says:

    Pain is the evil of evil, it effects us in so many ways .. still our mind and body will adjust to some of it – but not all .. and we except it. It saddens me so much to read about your pain.
    Because I had so little pain in my life .. my pain level isn’t very high and why should it ???
    I wish of all my heart that you will get some medicine that will ease your pain and make it more bearable, because if it will become chronic condition for you – you have to arrange your life around it – not easy … thinking of you.

    • jmgoyder says:

      I know you know how hard this is and you have a much worse condition Viveka – thank you for your support xxx

      • viveka says:

        Of course I support … the thing is the hopelessness that I feel when somebody is in pain – nothing we can do for each other .. more than being there.

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