MJ-SHE-BEAST
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Can I Make Bald Look Good? - or - Hat Shopping Time!

Wednesday, September 11, 2013

Many of you know the health issues I've faced over the years. I've had a heart attack and stents. I have COPD from foolishly smoking, though I did quit almost 13 years ago. I have back degeneration and spinal nerve damage along with fairly severe Rheumatoid Arthritis, Osteo Arthritis, Fibromyalgia, and SLE (Lupus). I am also more than 100 pounds overweight. I weigh exactly double what I want to weigh. This didn't stop me from training for a year and walking 13.1 miles in January, even if I was the slowest and took much longer than anyone else. It was a triumph for me and proved that if you want it bad enough, you figure out how to do it. My health since January seems to have gone continuously downhill, though.

Lupus is an auto-immune disease where your immune system doesn't recognize the difference between healthy tissue, muscles, joints, organs, etc and germs or bacteria and just attacks everything. My immune system has gotten so far out of whack that it is destroying my already inflamed and arthritic joints to the point I often need support when I first get up in the morning and when I get up from sitting for a while or driving. My knees sometimes pop out to the outside or inside or forwards or backwards without warning when I walk because the cartilage is being destroyed by my immune system. I cannot stretch my arms out nearly as far as I could a few months ago. I'm also having some vision problems and severely dry eyes which the doctor thinks is lupus related or is possibly another auto immune disorder that sometimes occurs secondarily with lupus called Sjogren's (show-grins) Syndrome, which my youngest sister has. I'm seeing an ophthalmic specialist soon to determine if this is the case. There are other issues but I think you get the picture. I'm in severe pain and my joints and connective tissue are being destroyed to the point that I'm on my way to being chair bound for life if something drastic doesn't happen.

Well, something drastic is going to happen. With lupus, you can go into remission naturally after a time of big "flares" of the disease, or in severe cases where the immune system must be stopped from doing further damage in a hurry, there are chemotherapy drugs. Yes, toxins like they give you for cancer. Yes, you get all the gloriously nasty side effects like nausea, vomiting, bladder infections, you're susceptible to everything viral out there as well as other infections. You get severe fatigue and weakness and yes, with one of the drugs it is most likely that you will lose your hair. Sometimes as soon as a week or so after starting the drug. The hope is to destroy the malfunctioning immune system and when it regenerates it will be a properly functioning system and the lupus will be in remission. I start the drugs tomorrow.

I'm a little freaked. My first granddaughter is due to be born any day and I am going to be sick. In her first weeks of life I will be bald and sick. I won't even have eyebrows. I'm terrified I will frighten my three year-old grandson with being sick and looking so different. Mostly I'm just freaked because while I never pretend to be a beauty queen (though i am cute as hell!) I cannot imagine myself being even remotely attractive bald. I have a very round face. I'm very heavy. I'll look more like Humpty Dumpty than that hot bald chick in the first Star Trek movie or Sigourney Weaver in Alien or Demi Moore in G.I. Jane. Yeah, I've been dwelling more on how I'll look without hair than on the fact I'll be puking up my guts for the next 4-12 weeks.

But, you have to look on the positive, right? I don't have cancer. I need this to feel better even if it will make me feel like dying for a while. I'll lose my hair and my eyebrows and eyelashes but I can have a lot of fun letting artistic friends temporarily "tattoo" my bald noggin and draw wild eyebrows on my face with sharpie markers. Maybe I can sell advertising space on the back of my head! I can go as Uncle Fester for Halloween. I can buy matching hats and hair bows on elastic bands for me and my newborn granddaughter. When I stop crying I will actually think some of these ideas I'm poking fun at are kinda cool. I won't be hiding at home because I have NEVER hidden from anything so I have to face it and figure it out fast.

The She Beast is going to be sick for a while, my friends. I am not giving up. I am not giving in. I'll come back stronger than ever, just you wait and see. Right now I just need to come to grips with this chemo business and being a hairless She Beast. So many of you have faced this with family and friends and even personally have had to deal with chemotherapy and its cost to the body because you or someone you care about has had cancer. I'm thinking I should be more grateful and less whiny...and maybe hit some online stores and see what hats are like for Fall. As always, I love you all.
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Member Comments About This Blog Post
  • TRUEGRITS
    I am sending you all the positivity I can squeeze out of the universe to you. Its okay to vent out what you are feeling; its a very human being thing to do and you are a super human being. You are in my prayers and thoughts.
    1869 days ago
  • SPARKYWATSON
    Good luck to you and you have my prayers too.
    1890 days ago
  • CINDYBEL
    Good luck with the chemo. My oldest daughter was diagnosed with MS, relapsing remitting, at age 21. She went through chemo twice and has had NO MS symptoms and no new lesions in at least 5 years. I know it will be extremely hard on your body during the treatment but I pray that your will be as successful as my daughter's has been. emoticon
    1890 days ago
  • TRUE-NESS
    Many prayers for you and your family as they help/support you through all of this.
    1890 days ago
  • KALIGIRL
    Sorry you are going through this - might want to consider a healing henna?
    http://www.sparkpeople.co
    m/mypage_public_journal_individ
    ual.asp?blog_id=4897301
    Your grandson can join you while it is performed and join in the festivities.
    PS - not sure if your meds will be the same as chemo, but do not be concerned if you lose your eyelashes more than once - I'm on my 4th set.
    emoticon
    1890 days ago
  • GHK1962
    MJ - I am super sorry to hear you are going through yet another health thing. And it's okay to be a bit freaked out about it ... who wouldn't be.

    And yes, hopefully the chemo treatment will kick the lupus into remmission. It also sounds like you're planning ahead for some of the side effects...that's good. Besides wigs, I believe many of the sites sell head scarfs and hats specially made for chemo patients.

    Keep being strong MJ ... if there were something I could do from so far away I gladly do it.
    1891 days ago
  • LIVESTRONG2010
    You know lady you are one strong human being! I don't remember my daddy losing any of his hair when he chemo. I know you will come through this and be even better than before. David loves you for you so things will be fine with him. And as for you new little one she won't remember anything.

    You can always get a sexy wig if you to.

    I'm sorry that you are having to go through this but I also have another friend that's going through pretty much the same thing just that chemo isn't something she can do. I am here if you need anything.

    Prayers are with you and your family
    Love you lots my She Beast!
    emoticon
    1891 days ago
  • TAMARA6905
    Oh no! I am so sorry to hear this craptastic news! It makes me so angry for you! I love you dearly, you're one of my best friends, and I don't want you to have to go through this! At all!! You are such a good person, you in no way deserve this! But I know you, and you're not one for self-pity, for long anyway, and you will not let this get you down! You have Robyn to look forward to and though you may be bald and sick, you will be here for her and that is what truly matters! And if a few months of sickness kick your body into remission, then I guess It's worth it right? I love you, let me know if you need anything at all!!
    1891 days ago
  • EDDYMEESE
    I'm sorry...that's definitely scary, but as you said, it is to make you feel better. I hope it works and I hope you have some fun with your new look...you sound very spunky and if anyone can pull it off, I think you can :)
    1891 days ago
  • LAWANDMUSIC
    Hugs, prayers, and love coming to you. I cheer your attitude! Never let them get you down~~

    I have a good friend. She has lupus. No fun at all. But she is an amazing woman.

    I am sure that you are too!

    ONWARD!!
    1891 days ago
  • DAMEGRIS
    Well we already talked privately, but I just wanted to add here that I am thinking about you, and I'm hoping with every ounce of myself that this will help you. You're one of the strongest people I know, and I know you'll make ti through this.
    1891 days ago
  • HEIDIJUNEBUG
    MJ, I am so sorry. This is a tough one. Hang in there and let me know if there is anything I can do. The good thing is that this will only be temporary. Keep that in mind and direct your focus to the joy in your life, especially your soon-to-arrive little granddaughter. emoticon

    PS: You did not finish the 13.1 miles last. I did. emoticon
    1891 days ago

    Comment edited on: 9/11/2013 7:43:50 PM
  • HEALTHYHABITGAL
    hugs and prayers to you - let me know if you need anything
    1891 days ago
  • ISPARKLE77
    Wow, you have really had a lot of health issues hit you. I am so sorry. Sometimes life does not seem fair. Life can be tough at times. I am a two time cancer survivor. I have been cancer free now for 18 years. I had chemo, radiation and a bone marrow transplant. I lost my hair twice as well as my eyebrows, eyelashes, fingernails and toenails when I had my bone marrow transplant. I ended up going to a hair salon here in town that makes cute hats in all kinds of colors and bought two of them. She then took a piece of hair from a wig that was about the color of my hair before I lost it and she created bangs and she attached them to the hat with Velcro. I wish you the best and you are in my thoughts and prayers.
    1891 days ago
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