Hair loss: my story (long)

WaileaWailea Posts: 14Registered Users
Hello ladies,

I am usually a lurker, but I decided to share my story. I don't have any advice to give, but I know that in my case it has always been comforting to read other ladies' stories and to see the similarities in our struggle.
I am a 36 year-old biracial women. My hair has always been my pride. I've always had long, BSL, shiny, well defined corkscrew 3c curls. I used to give the name of this website to all the curlies who would listen, since it helped me so much!
Then it happened. One day I woke up with one hive. Then 2. Then 3. A few months later, I barely had any normal-looking skin left. I was covered in extremely painful, itchy welts from head to toe. Then the swelling appeared. First my lips. Then my hand. Then the sole of one foot. Every day I would wake up, wondering which part of my body would be swollen. I was completely disfigured. To make a long story short, I was told that I had an autoimmune disease and I had to wait it out. It lasted 7 months. 7 months of pure hell. Just the feel of fabric on my skin would make me cringe it was so painful. I am now in remission (yeah!). In order to be able to somewhat function back then, I had to take a very high dose of a cortico-steroid (prednisone), and I now suffer the consequences:

I lost 50% of my hair volume. I used to have to buy the biggest jaw clips I could find. Now I can use my 3 year-old daughter's hair accessories with no problem:sad7:. My hair also became extremely brittle and started breaking. For the first time, I now have split ends everywhere. I quickly lost a 3rd of my length. I recently got a very crappy haircut to try to even it out, but now my hair is chin length, see-through, still damaged, dull, and frizzy no matter what I do.
I have shed many tears over this, and I still do. No matter what my DH says, I don't feel pretty anymore. When I look at myself in the mirror, I don't recognize this person. Not only has my weight ballooned up due to the steroids (I'm working on it), but this rat's nest that is now my hair is not me. My hair was my crowning glory. I pampered it so much, but now it's gone and in terrible shape no matter what I do. My dermatologist informed my that due to the amount of stress my body was under during my illness, not only did my hair fall out, but very little nutrients probably went to my hair as well.
What I really need to do is to chop it all off and start fresh, but I'm not ready for that. Kudos to all the women who BC. I know it will grow back, but achieving length with 3c curls takes so long!!! I tried wigs but it looks silly on me. I tried braidouts and twists to achieve length, but it makes my hair looks even more stringy.
I am so depressed over this. I am fully aware that, in the grand scheme of things, hair issues are really not that important. So why does it affect me so much? I think about my hair all the time. Am I the only one?
I spend hours on the Internet trying to find a miracle cure I know does not exist...
What should I do?

Comments

  • GreatcurlsGreatcurls Posts: 1,784Registered Users Curl Connoisseur
    What was the cause of your hives?
    Mod CG-Naturally Highly Porous and Dry
     *This list is not exhaustive...
    CoWash: various
    DT: various
    Leave-in: 100% Mafura butter, Shima Hair Leave-in 
    Stylers: MoroccanOil Curl Defining Cream, various
    Spritz/Sealant:not now
    *experimenting and loving it!
  • curlypearlcurlypearl Posts: 12,219Registered Users Curl Connoisseur
    Wailea wrote: »
    Hello ladies,

    I am usually a lurker, but I decided to share my story. I don't have any advice to give, but I know that in my case it has always been comforting to read other ladies' stories and to see the similarities in our struggle.
    I am a 36 year-old biracial women. My hair has always been my pride. I've always had long, BSL, shiny, well defined corkscrew 3c curls. I used to give the name of this website to all the curlies who would listen, since it helped me so much!
    Then it happened. One day I woke up with one hive. Then 2. Then 3. A few months later, I barely had any normal-looking skin left. I was covered in extremely painful, itchy welts from head to toe. Then the swelling appeared. First my lips. Then my hand. Then the sole of one foot. Every day I would wake up, wondering which part of my body would be swollen. I was completely disfigured. To make a long story short, I was told that I had an autoimmune disease and I had to wait it out. It lasted 7 months. 7 months of pure hell. Just the feel of fabric on my skin would make me cringe it was so painful. I am now in remission (yeah!). In order to be able to somewhat function back then, I had to take a very high dose of a cortico-steroid (prednisone), and I now suffer the consequences:

    I lost 50% of my hair volume. I used to have to buy the biggest jaw clips I could find. Now I can use my 3 year-old daughter's hair accessories with no problem:sad7:. My hair also became extremely brittle and started breaking. For the first time, I now have split ends everywhere. I quickly lost a 3rd of my length. I recently got a very crappy haircut to try to even it out, but now my hair is chin length, see-through, still damaged, dull, and frizzy no matter what I do.
    I have shed many tears over this, and I still do. No matter what my DH says, I don't feel pretty anymore. When I look at myself in the mirror, I don't recognize this person. Not only has my weight ballooned up due to the steroids (I'm working on it), but this rat's nest that is now my hair is not me. My hair was my crowning glory. I pampered it so much, but now it's gone and in terrible shape no matter what I do. My dermatologist informed my that due to the amount of stress my body was under during my illness, not only did my hair fall out, but very little nutrients probably went to my hair as well.
    What I really need to do is to chop it all off and start fresh, but I'm not ready for that. Kudos to all the women who BC. I know it will grow back, but achieving length with 3c curls takes so long!!! I tried wigs but it looks silly on me. I tried braidouts and twists to achieve length, but it makes my hair looks even more stringy.
    I am so depressed over this. I am fully aware that, in the grand scheme of things, hair issues are really not that important. So why does it affect me so much? I think about my hair all the time. Am I the only one?
    I spend hours on the Internet trying to find a miracle cure I know does not exist...
    What should I do?

    Don't feel so badly, sweetie. Hair issues that make you look very different can make you feel like you aren't yourself anymore. Losing hair is very upsetting - it happened to me. Have you been to an endocrinologist to see if your thyroid is doing its job OK? Can you use Rogaine?

    I know you are hesitant to do a BC but putting up with crappy looking long hair may just make you feel worse. Starting fresh, even if its short may be better than screwed-up long hair. After I had brain tumor surgery, I had to cut off a lot of my hair - so I sympathize. Good luck and let us know how you are doing!
    2/c Coarse hair med. density.
    Highly porous. Color over grey.
    I love all the Curl Junkie products. Still experimenting with gels and curl creams. Still hoping for 2nd day hair....
    Every day is a gift :flower:
  • WaileaWailea Posts: 14Registered Users
    Greatcurls, the cause of my hives and swelling was never found, so they just say "autoimmune" when they cannot pinpoint the reason. I'm very lucky it only lasted 7 months.
    Curlypearl, Thank you for the encouragement. Are your curls growing back nicely?
    I am going to make an appointment with a Deva-trained stylist 2.5 hours from here to have my hair cut short. I made the sad decision this afternoon. I also made yet another appointment with my doc. He's checked my thyroid before, but I read that there are more than one level to check to really make sure, and since there is a very strong history of hypothyroidism in my family, I will insists he digs deeper or refer me to someone who will.
    I don't really want to take Rogaine as it would be a lifetime commitment, which I am not ready to make yet. So for right now I'm just taking Biotin, MSM, a good multivitamin, flaxseed oil, I upped my protein intake and exercise 5 times a week. Unfortunately that has had no effect so far. :-(
  • curlypearlcurlypearl Posts: 12,219Registered Users Curl Connoisseur
    Hang in there Wailea. It gets better! Cutting your hair off really short is like ripping off a bandaid - ouch! but it's better than slowly trying to cut it piece by piece (ripping the bandaid slowly).

    I'm very happy with my hair now - thanks for asking. I hope your curls grow back quickly. Hair on everyone grows more quickly in the summer, so that's helpful for you because we are heading into the quicker growing season - rather than going into winter. Let us know how it goes!
    2/c Coarse hair med. density.
    Highly porous. Color over grey.
    I love all the Curl Junkie products. Still experimenting with gels and curl creams. Still hoping for 2nd day hair....
    Every day is a gift :flower:
  • SuburbanbushbabeSuburbanbushbabe Posts: 15,402Registered Users Curl Neophyte
    The hives sound so painful. I hope that things are better now.
    My blog - http://suburbanbushbabe.wordpress.com/
    My FOTKI - http://whatsnew.fotki.com/suburbanbushbabe/
    comic-p.jpg

    Playing with my hair is a hobby. Fluffy, fine natural 4a. Goal= Healthy, beautiful hair that retains its length.
    Hear that crash? It's me falling off the CG wagon.
  • NancyV908NancyV908 Posts: 108Registered Users
    I am so sorry for all the suffering you went through. I think your feelings about your hair are completely understandable, on many many levels.

    I cannot speak from experience, but I must say that as I read your story, I did think that the best solution would be to go short. That is brave of you to have made the decision. Let us know how it goes!
    My properties
    Fine, normal porosity, normal elasticity

    Leave-in Suave Naturals Tropical Coconut; looking for a replacement for the no-longer-CG Garnier Fructis Triple Nutrition
    Gel Looking for a replacement for the discontinued LAL blue gel. Also thinking I need a low- or no-humectant gel for high-dew days, but haven't figured that one out.
  • WaileaWailea Posts: 14Registered Users
    Thank you all for your kind words!
    This morning I made an appointment with the famous Tiffany/Struttswife in St Petersburg, FL for next month. I will see what she suggests in terms of cuts. It really looks like she knows her stuff, so hopefully, I will finally have a decent shape in my hair.
  • NancyV908NancyV908 Posts: 108Registered Users
    Ooh, Tiffany! You are lucky. If you have to do this, she's a great person. That should make it easier to contemplate....Good luck!
    My properties
    Fine, normal porosity, normal elasticity

    Leave-in Suave Naturals Tropical Coconut; looking for a replacement for the no-longer-CG Garnier Fructis Triple Nutrition
    Gel Looking for a replacement for the discontinued LAL blue gel. Also thinking I need a low- or no-humectant gel for high-dew days, but haven't figured that one out.
  • GreatcurlsGreatcurls Posts: 1,784Registered Users Curl Connoisseur
    Wailea wrote: »
    ... So for right now I'm just taking Biotin, MSM, a good multivitamin, flaxseed oil, I upped my protein intake and exercise 5 times a week. Unfortunately that has had no effect so far. :-(

    It takes about 3 months of keeping to a supplement schedule before you see results. Hang in there.

    Have you been to a dermatologist or a trichologist?
    Mod CG-Naturally Highly Porous and Dry
     *This list is not exhaustive...
    CoWash: various
    DT: various
    Leave-in: 100% Mafura butter, Shima Hair Leave-in 
    Stylers: MoroccanOil Curl Defining Cream, various
    Spritz/Sealant:not now
    *experimenting and loving it!
  • WaileaWailea Posts: 14Registered Users
    I am on my 6th month of supplements now. They haven't affected my nails either, they are still just as weak.
    My GP sent me to a dermatologist, who seemed completely clueless to be honest. She was very young, and did not take my distress very seriously. Since I have curly hair, the thinning is not as obvious, although I brought before and after pics, but she did not seem interested in seeing them. Unfortunately I cannot afford to see another dermatologist at this time since I am currently without health coverage. I hope that, with lots of patience, and hopefully a good cut next month, I will be able to recover some of the pretty curls...
  • wavysheilawavysheila Posts: 3Registered Users
    hi, i have been through a very similar experience, and delurked just to respond.

    i actually started going curly and found NC bc after my hair started falling out in hunks i freaked and thought that not blowing out or using straightening irons on my hair would help.

    i went to a dermatologist who specializes in hair loss. she said that what i had (hair loss after illness/trauma/hormone thing etc.) is called telogen effluvium. you might google, it sounds very much like what happened to you. every day i would find new bald spots on my temples, top of head, etc.: sooo depressing.

    so the advice the fancy derm gave me? just wait it out, it'll grow back. i'm not sure you're missing out on much not being able to see another derm!

    for me at least that's been true, i hope it will for you too!

    i went out and bought these insanely pricey phytologie vitamin/supplements at sephora. maybe its just the placebo effect, but i swear i feel like they're helping.

    hugs!
  • seleneselene Posts: 11Registered Users
    Hi wailea,
    Please consider reading up on Vitamin D and its impact on the body's health. You can even get books from the library (free!) about this. I recommend The Vitamin D Solution and The Vitamin D Prescription.

    Keep in mind that Vitamin D is, technically, NOT a vitamin, but a type of hormone that is rather important to many facets of the body's health. You may want to add a D3 supplement to your arsenal of vitamins.
    Vitamin D Council | Understanding Vitamin D Cholecalciferol

    Also, when the day comes that you have health insurance again, consider going to see an endocrinologist (Endocrine System Diseases, Symptoms & Treatment: The Hormone Foundation) and ask the doctor to check your vitamin D levels if they draw blood.

    P.S. What is "BC?" :?:
    Curl Type 2A
    Lone HG product: Jessicurl Too Shea Conditioner
  • crimsonshedemoncrimsonshedemon Posts: 2,098Registered Users
    selene wrote: »
    P.S. What is "BC?" :?:

    big chop
  • WaileaWailea Posts: 14Registered Users
    Selene,

    Thank you for the Vitamin D recommendation. Right now I am taking a calcium with vitamin D supplement, but the amount is fairly low. I found out that my city has a program for the uninsured, and I just got my first referral to the endocrinologist, as I have an array of other health issues that needs to be addressed. I will definitely bring it up to him.
  • willamatthewswillamatthews Posts: 10Registered Users
    instead of using so many productsonce consult a tricologist so that your problem will be solved easily and you can know the reason for your hairfall.

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