Replies to This Discussion

Permalink Reply by Karen Smith on February 1, 2011 at 1:26pm

I am so sorry for what you are going through. The alopecia while life changing will not stop you from having a great life if you don't let it. The pain is something else. Please find a good rheumatologist. My daughter-in-law developed RA after a bout with a virus and had difficulty walking from the bed to the couch. She is now healthy and athletic again. It took alot of pushing and a Dr. willing to go outside the "box". I hope that you can find the right treatment to get the pain under control. Just get a good wig and you can look great, my daughter sure does, so don't worry about "those moms". Alot of "those moms" are dealing with things that you don't know about. Everybody has some issues. I really hope things get better soon for you.

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Permalink Reply by Chefpam on February 1, 2011 at 2:59pm

Thank you Karen. Yeah, it's just too much at once I think. I can't deal with one for the other. I have seen so many rheumy's and derms that I stopped counting after 200. I am so fed up with them. The last rheumy was such a jerk he told me that he would be depressed if he were me but that there wasn't any options left for me. I tried biologics and they made me worse and caused other problems. So now, it's like I am the bad guy because my body doesn't respond to their meds. I have been on the Paleo diet and praying for change, but nothing yet. I would love to talk to your daughter, it seems we have a lot in common. I realize these Moms most likely have issues too it's just the ones I am dealing with are so obvious. I just pray I can overcome this and all my insecurities that keep popping up. Thanks again.

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Permalink Reply by Chefpam on February 1, 2011 at 8:05pm

Aw, thank you Alice. Wish I could give you a hug because you described this vicious cycle so well. I don't know how to relax anymore. Like the practicing medicine laugh-that's for sure..They've sure practiced enough on me to no avail. Hugs and prayers to you.

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Permalink Reply by Dominique Cleopatra on February 1, 2011 at 9:05pm

Chefpam, I'm so sorry for all that you're going through, to have all that pain on top of the hair loss it must be so frustrating! Have you considered some holistic options such as gentle yoga, mediation, prayer, talk therapy or chinese massage? Maybe just some time in nature, or something to help you reconnect with the spirit that I believe animates our physical bodies would be beneficial. Sending you Love♥♥♥

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Permalink Reply by Karen Smith on February 1, 2011 at 11:21pm

My daughter-in-law had the RA and pain. Embrel ended up being the answer for her pain. My daughter has alopecia but she is handling it extremely well. Let me know if I can help.

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Permalink Reply by Georgia Gardner on February 2, 2011 at 3:34am

I think the worst thing anyone ever told me was "it's just hair". followed closely by "at least it's not...".
These comments make you feel guilty for feeling what you're feeling, which just adds another emotion to the confusing mix of pain, resentment, and sadness that the loss of control over your self creates. And it is loss of control of yourself, not loss of the hair, that is scary. I was so young and so confused when i was told my body was doing this to itself. I hated it. And the more people told me my hate and anger wasn't warranted, the more guilt I felt, and the more hateful I became. Again with the "vicious circle".
I lost God when I lost my hair. I did the praying and the "why me?" and never got an answer. I eventually found it easier to not believe than to think someone willed this pain on me. I wish I could still believe, and I think that the fact you keep your faith shows you have the great strength, the "ability to push foward" that you mention. It's okay to hate. It's part of being human to feel. People who make you feel guilty for that, they can't understand. And that's okay too - because ignorance is better than malice. But feeling whatever you do, that's all right.

"At least it's not..." deminishes what it is. It is a disease which disrupts almost every part of your life. It is incurable. It is that big damn scary unknown. and it's ok to hate it. Because it's not just hair.

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Permalink Reply by Chefpam on February 2, 2011 at 7:28am

Yes Dominique I am currently seeing a fundamental practicioner. I gave up the biologics because they were causing me more problems. I take supplements, prayer, changed my diet...but I have trouble relaxing because of all the pain and anxiety. I live in the boonies and chinese medicine and accupuncture are unheard of here. I can't even do Yoga because I can't find a comfortable position with my fused neck and spinal pain.

Glad Enbrel worked for her Karen. It did for a couple of months for me and then I started having awful side effects from which I have never recovered. I think it triggered something huge with my immune system.

Yes Georgia I agree. It's just hair really doesn't help in ANY way. If it is why can't we all have it right? And I say the exact same thing every day: I have no control over any of this. My routine, spontaniaty, everything I have been robbed of. It makes me sad that you said you lost God. I pray that you will find HIm again. I could not imagine doing all this without Him. His promimse ensures me that this pain is only temporary and some how that keeps me going, as much as I am struggling. . And yes, very few people do understand this. I don't know but one single person in my area that has alopecia and she really doesn't want to talk for some reason. The "at least it's not" is a joke...pain is pain in any form. Thanks for all your support...it means a lot. Hugs to all.

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Permalink Reply by Karen Smith on February 2, 2011 at 10:48am

I am sorry that the Embrel did not work for your pain. Don't give up looking for answers. I will be praying for you. The immune system is so complicated and medicine does not have a handle on it. I am an RN and my middle son is in med school. I have read all of his books on the immune system trying to understand it. I have a really good rheumatologist in St. Louis. He thinks outside of the box. He has not been able to help my daughter with alopecia but he did help my daughter-in-law. Alopecia is awful and when my daughter lost all of her hair in highschool in 2 weeks I thought that life would never be the same. She is away at college and has beautiful wigs. She knows she is gorgeous, has a boyfriend and gets asked out by other guys every time she goes out. Her friends and boyfriend know about the alopecia. People stop her when she is out and compliment her hair. She just says thanks. It doesn't have to stop you from having a full life. She says you have to learn to be happy no matter what happens to you. That inspires me.

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Permalink Reply by Chefpam on February 2, 2011 at 10:58am

That is awesome Karen! There are no good drs. here. The last 2 I have had literally made fun of me. The one I am seeing now told me at my last visit that he would be depressed if he were me. It seems that any medicine they give me backfires and then they get mad at me for it not working. So I have pretty much given up on western medicine. Your daughter sounds like a gem and you are truly blessed.

I know Stacey! Listen to me..I just said to my husband on the phone, NONE of these Mom's care about me why should I care what they think? I know this yet I still let it get a hold of me and start comparing the fact they they work, have their hair and health, etc. AND I know it gets me nowhere but more upset..yet I can't stop doing it. This morning has been awful. I argued with a nurse because my holistic practicioner (who isn't a MD) wants them to order a pet scan to rule out any cancer or anything else because I am not getting better despite all my changes and they won't order it. It's always an argument with drs it seems. Then I look outside to find our pet cat of 7 years dead by the mailbox. I can't stop crying....I want to be stronger...I want to be an inspiration, afterall I always told my special needs kids you can do anything you want...What kind of hypocrite am I? Why can't I get that grip that others do? Yes, I still have some of my mind but I can't remember things like I did. Everything has been effected by these diseases. Please pray I make through this day and find peace. Thank you for caring enough to respond to me. I know it's hard to not just say, "snap out of it."

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Permalink Reply by Karen Smith on February 2, 2011 at 9:42pm

I am so sad about your cat. I am also sorry that you can't find good medicine where you are. My son quit his job in California and moved back to St. Louis to work for his dad so that we could get my daughter-in-law on good health insurance and get her treated. We were so frustrated with the medical community in California that would not take her seriously. I understand how tough that is. I brought a 22 year old home in a wheelchair and they were telling her to take advil. She is great now. Don't give up.

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Permalink Reply by Tuesday on February 2, 2011 at 11:21am

Hi Pam. I'm also a member of the Wig Support group and I remember you from that board too. I think Stacey gave some great advice. I am going through (like many of us here too) a full plate of health issues. My arthritis has destroyed my feet and is working on the rest of my body. Not only am I no longer to able to do any sports I once loved or walk very well or even run after my children if they are in danger, but I have facial neuralgia, hyperacusis and a host of other issues in addition to alopecia universalis. I am waiting to get my joints fused or replaced on my feet but apparently that won't be a perfect solution.

So, yeah, I do get angry and feel sad. But, it is what it is. Life isn't fair and some people don't seem to have the health issues and challenges that others suffer. But, it's simple - the best thing to do is count our blessings. I have my eyes - I can read and think. I can listen to beautiful music and sounds of nature. I have lovely children. I am able to work my fingers well enough to learn to play beautiful music on a classical guitar. I may have crappy fingernails that interfer with the technique, but, it's better than nothing.

Sometimes I envy another woman and then I chat and find out - okay, she has hair, she has no arthritis, the family have no money issues - but the perhaps her mom died when she was very young. Or, another person with a "perfect - looking " life - her son has leukemia or perhaps her brother was murdered years ago. These are all things I've discovered in the circle of moms I know. There's just no point envying others (even if it's hard not to, some time) because we don't know the crosses THEY bare either.

You're young, you have a wonderful family, you still have some hair, you have a vocation you like - you are intelligent and have a good heart. The hair loss and other issues - may not be fixable - but that's life. So, perhaps focus on radiating a really strong loving soul every day and think positive and look at those blessings of yours. A journal might help.

I can't say enough good things about meditation. I do yoga (mostly kundalini but some traditional hatha). I work around my disabilities and do what I can. But, I find just sitting and meditating really calms me and helps my anxieties and anger. I'm a converted Catholic now but I don't follow anything Christian - it's actually meditation from a Ravi Singh and Ana Brett dvd. I might spend 5-20 minutes doing their meditations - the music is beautiful and I feel calm. Many times I find the pain in my body "turns off" while doing meditation and yoga.

Nurture yourself and make the most of what you have. I am not trying to wave my finger at you, Pam. I'm talking to myself as well! I had a really bad day - crying a lot. It was NOTHING to do with hair. It was the discovery that my feet are utterly destroyed and even surgery will not fix them. That's not nice news. I cried all night and then I got up in the morning and listened to Yo-Yo May play a beautiful Bach cello suite and thought, "Okay, that's beautiful. I'm okay. I still have ..... ". You must cling to positives if not life's negatives will just BULLDOZE you.

I think Stacey has given very wise words of advice here. :) Take care! :) (((HUG)))

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Permalink Reply by Chefpam on February 2, 2011 at 11:40am

Thank you Tuesday. Yes, I remember you and we have talked before. Thank your for sharing your story with me. Sounds like we too have a lot in common. I realize all the things you say and I am so grateful for my life. I make a list every day and thank God for all the good things in my life. I know everyone has problems and I am not the exception. I just feel like I am frozen. Soon as I wake up the pain hits me, then fighting with the hair(yes I have some left but it burdens me so bad with the clumps that still fall out and it's not stylable) so I wear the wig that hurts my scalp and then I get a headache...and so on...I know it could be that I am putting on my legs. I know no matter how bad it is it could be worse. I just don't know what is wrong with me that I can't move forward. That's what I have been trying to say...it's like I am paralyzed in this.I don't know how to get a new routine..I am so scattered whereas before I had it all together, my routine anyway. I so appreciate everything you have shared with me and am so sorry for your pain. I have to find a way to reconnect with society as much as I fear it. I have tried to do Yoga many times and just can't. I would love to find that "turn off" switch. I know you are not waving fingers. I remember how sweet you were to me before and I am grateful for that and all of you. Just pray I can get tough. And yes, Stacey, like many of you, is an inspiration. Love to all.

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