It isn’t easy living with a disease like Hidradenitis suppurativa, but it’s even harder when you have children to take care of. Most of us with HS are frightened to death that we’ll pass our HS on to our kids. We’re also overwhelmed with medical bills, depression, and pain, which makes it harder to care for others.
Our two winners today are mothers. Tara has received many emails from desperate moms, who are only hanging on because of their children. We hope that the information in The Hidden Plague will help them–and mothers everywhere–to overcome this disease and to regain their power. After all, we can’t properly care and give to others when we can’t properly care or give to ourselves.
My dear friend (whose husband is dying in the hospital right now), just emailed me this link to your site and told me about your book, of which I was previously unaware. I almost cried when I read the description of your book:
“Have you been plagued with boils, cysts, ingrown hairs, and acne-like bumps that take months to resolve, leave embarrassing scars, and cause considerable pain? Have you been to the doctor, only to leave with a prescription for antibiotics, few answers, and little to no hope? Hidradenitis suppurativa (HS) is a poorly understood skin condition that is believed to affect nearly twelve million people in the United States alone. Only a small fraction of those affected have been properly diagnosed, leaving many others to suffer in silence or pursue ill-advised conventional treatment methods that fail to address the cause of this painful condition.”
This describes my experience of the last several years perfectly! I almost cried with relief that there might be some hope for me, after all!
Three years ago, I started getting what I refer to as “boils”. They are very painful and unsightly and I find them very stressful and disruptive! I was worried and went to my doctor. The first few times I went to see her, she prescribed antibiotics and cited a potential ingrown hair or cystic acne. She sent me to a dermatologist who put me on a cycle of several different antibiotics, to which I began to exhibit allergic reactions. I received NO RELIEF, and finally stopped going to the dermatologist because nothing helped and in fact, he made it worse. Now, three years later, I try to avoid antibiotics and if and when I need them, I am in jeopardy of hospitalization and separation from my three children who still live with me (one is grown and in the Navy), because there are not many/any antibiotics I can take without constant monitoring and supervision for fear of suffering another allergic reaction. Clearly this experience has put my health at further risk.
As I said, the “boils” did not stop. I get new ones regularly. I have learned not to pop them or disturb them in any way. Depending on where they are located, they sometimes prevent me from wearing a bra, exercising or walking without pain, and they affect what clothing I can wear. They can be very, very painful and they are embarrassing and leave scars when they eventually heal. Healing takes a very long time. I thought this was because I am pre-diabetic. Most recently, last week, I went to the doctor because i have two huge ones under my right breast and I was concerned that maybe they were some type of cancerous breast lumps and wanted to rule out boils. The doctor said they may be a skin infection of some kind and suggested another antibiotic, which I am currently on. I am suffering from miserable diarrhea and itchiness from the antibiotic and the bumps are still there after 7 days of treatment!
I have tried doing a detox twice, and have tried various homeopathic remedies. I have started buying only soaps with pure ingredients and making my own washing powder. I have tried to modify my diet. I have tried antibacterial medical grade washes. I have tried doing research on my own. But nothing has helped. It is difficult to impossible to treat something when you cannot properly diagnose it! That is why I was so excited to read your description about your book, describing exactly what I have been experiencing!
I am a single mother with four children, and the youngest three living with me. I work a professional job and have become so worn down with pain and fatigue associated with these boils I can’t get rid of and for which I can’t really take time off, and so discouraged with the ongoing battle that it seems I’ll never win, that it is affecting my frame of mind and my performance. It affects every aspect of my life – exercise, self-esteem, crabbiness (when I’m in pain) with my children, mental morale and well-being, what I wear, my activity level, and prevents me from feeling like I can swim, or be intimate someday in the future. I feel like having a solution to treating this condition, having answers, knowing what might be going on, would actually “change my life” for the better and give me back my hope. I am only 45 years old but this, more than anything I’ve gone through in my life (abusive marriage, starting over with my children 9 years ago in a shelter, being alone, struggling financially) has really gotten me down.
I am not in a position to purchase things for myself at this time. I am struggling to manage a few things for my children for Christmas. I am behind on paying off about $900 in medical debt and have rent, car payment, bills, etc. like everyone, I’m sure, and I even try to help those around me who are faring worse than me. If I could get a free copy of your book for Christmas this year, that would be the BEST present ever! If I can’t, I hope many people are helped by the information and I will try my best to buy a copy, as soon as I can. IF I do win a free copy of your book, I will read it, share the information about your book on Facebook, and give my copy to my doctor (my GP for 16 years) when I am done so that lots of people can benefit from this blessing!
Either way, thank you for giving me the most powerful gift of all – information and the HOPE to keep keeping on!
-Kimberley, Shoreview, MN
Hi there. I am mom of almost 16-year-old beautiful girl, Faith.
Not quite sure where to begin. It’s a long story. Faith is the youngest of 5 children. Her only significant medical history is she had RSV when she was 1 week old. I believe she had some kind of steroid given to her for a week.
Starting about 3 years ago, Faith had a seizure. She had no other medical conditions at the time. She had 3 seizures in 4 months. All were at almost the same time in the morning, and about 28 days apart. We started with a neurologist who did an EEG, and gave her a prescription for anti seizure medication. As I was checking out of the office, I asked if they had any print out for the medication, so I could look at the risks, etc. The doctor, who was standing at the end of the counter, said, “You can look that up on the internet”. I was quite disappointed that he did not want to discuss any side effects, etc.
Of course, I went right home and started researching. After reading dozens of stories and testimonials on what is referred to as the “rage drug”, I was very scared about starting her on this drug. This all took place after her 3rd seizure. We did end up getting a new neurologist, who concurred that it was best to take the drug.I asked her about the correlation between having the seizures, and the start of puberty. Maybe there was something wrong considering she has had tests indicating her hormone levels are not right, and she has not had a period, but the seizures were all near the time that she could have had one. She has been seizure free and has recently come off the drug.
During this time, she also began to gain more weight, it was not evenly distributed, and gathered mostly in her midsection.I also noticed some discoloration on the back of her neck, and a kind of hump. Around this time, her pediatrician, during a regular visit, said we should get a consultation for PCOS. He said her weight gain, and the shape of her body indicated so. Faith was also starting to have an increase in body hair, upper lip, sides of her face, chin, neck, very thick and coarse on her legs. The first gynecologist was worthless. She said, I can’t do any tests on her until she has had a period for 5 years. As for the hairiness, she states , it should lessen when she gets her period. She had not had one at all yet.
We did consult a specialist in PCOS, who did ultrasounds, blood tests, etc, and said she did not have PCOS, but to take a pill that would jump-start her menses, and that should take care of the problem. She did not take the pill. We also consulted with an endocrine specialist, who said Faith had elevated liver tests. His advice was to not drink soda or juice for 3 months and to come back. Throughout this whole process, Faith was developing the cyst like nodules. I asked each doctor to look at them. They said, keep it clean, and put some ointment on it. We had Faith tested for MRSA (negative). Her blood tests showed she had increase in hormones, but doctors only say, wait for her period. I took Faith to a dermatologist, who gave her some soap for the shower, and told her not to take bubble baths. She has also been plagued with some type of scalp condition. It almost is like cradle cap that babies get. She has also been tested for diabetes (negative). Faith may also be developing some kind of IBS.
As of today, Faith has had several large cyst like bumps, mostly under her arms, in between her breasts, and a few at her waist line area, and a few in the groin area. It is very painful, has an odor, and has caused significant scarring , especially between her breasts. She is active and plays basketball and soccer, but is very self-conscious that these areas will be seen by anyone. I am so interested to read your book. I have read the reviews, and looked at pictures. I believe I have found what Faith has. I want so much to help her get rid of this condition, and for her body to heal. I feel that all her symptoms and conditions are related, but can not get any one doctor to really listen. I have read about surgeries, and medications, that seem to cause more harm than to help this condition. I would love to read about the holistic approach to clearing up this terrible unknown condition/disease.
-Robin, 47, Kenosha WI
***If you already have a copy of The Hidden Plague, it would mean the world to us if you could review it here, on Amazon. Just because your story isn’t on PrimalGirl doesn’t mean that it shouldn’t be seen. Share how reading The Hidden Plague has changed your life!