Tear drops in blood.

A compilation of worries from the HS community.

I worry there will never be a CURE. I worry about dying. I worry about pain. I worry that my children will also get HS. I worry about my children who already have HS. I worry about having children. I worry if there's anybody out there that can help who cares. I worry about infection. I worry I let my friends down. I worry I let my family down. I worry about not being a productive part of society. I worry about all of the dreams I have and the fact that I can't do them. I worry about wearing a bra. I worry about blood seeping through my clothing. I worry about sweating. I worry about soap. I worry about swimming. I worry about walking. I worry about sitting. I worry about standing. I worry about my underwear. I worry about toilet paper. I worry about bandages. I worry about embarrassing myself. I worry about embarrassing you. I worry about not being here tomorrow. I worry about tape. I worry I will never be financially stable. I worry about wearing light colored clothes. I worry that I am seen as flaky or unreliable. I worry that I can't just wear a normal sleeveless wedding dress. I worry I won’t be able to dance at my wedding. I worry an open wound will come into contact with something fatal. I worry about not being here for my family. I worry about shaving. I worry about forgetting to not put on anti-chaffing/sweat powder. I worry about not disinfecting my skin. I worry about my weight and the negative health issues that come along with it. I worry because I can’t exercise and lose weight. I worry if tomorrow will be worse than today. I worry that there will be more bills I can't pay. I worry that I'll lose more feeling in my hands. I worry where else it will spread. I worry about sinking so deep into depression I never find my way back. I worry about not being able to play with my nephews and niece. I worry I won't wake up one day. I worry about my funeral. I worry how my mom will handle it if she has to bury me. I worry about losing my house. I worry that my dad won’t be around much longer. I worry about losing everything that I hold dear. I worry about not having enough money to make ends meet. I worry about not seeing my children grow up. I worry that I will never be able to play with my children. I worry that I will never be able to make the most of my life. I worry about making the right decision. I worry about making the wrong decision. I worry that every time my son or husband leave, they will never come back. I worry about being alone. I worry that I can't get through the day. I worry my disease will progress to stage three. I worry about losing my job. I worry about all the young sufferers. I worry about my clothes getting ruined and not having money to replace them. I worry about getting in trouble at school because a sore leaked and I smell really bad. I worry about getting MRSA again and having to be hospitalized. I worry that one day I'll have to have another surgery and I won't wake up. I worry that there is no end in sight and I'll have to live with this pain forever. I worry that people will see me as weak if I just sit down and cry. I worry about the meds I take effecting my heart and liver. I worry that they will discontinue yet another product I use daily to help me deal with my HS. I worry that friends and family will get frustrated and just stop understanding. I worry that this chronic pain will always have me at the edge of yelling at someone. I worry my husband will stop loving me. I worry about the gulf coast summer coming. I worry about being able to walk without people seeing my pain. I worry about shorts and comfortable clothes. I worry about my husband's back injury and if he will ever be able to work again. I worry about having to move out of my house. I worry about when I will have enough, and end it all. I worry that I can't clean my house. I worry that no one will take this seriously. I worry that I can't take medication because I have a tendency to get blood clots. I worry that this could lead to more serious complications. I worry that I am always a burden on the ones I care about and love. I worry that the medical community will never fully recognize this. I worry about not being able to brush or do my hair. I worry about my scars. I worry about what my friends think. I worry that I stink. I worry because no one can count on me. I worry because I can't count on myself. I worry about surgery. I worry about me. I worry about you. I worry it will keep getting worse. I worry that I worry too much but that doesn't stop me worrying even more.

Terrified

I didn't think I would be, be I'm terrified about my upcoming surgeries. Its literally been haunting me. I have nightmares that I can't shake, I'm questioning everything. I know in my heart that this is something I need to do, but my mind is getting the best of me.

I won't know until the day of surgery where they will be doing surgery. They are hoping axilla, torso, but they said it depended on how healthy my skin is, where they would do the first surgery. It is scary not knowing on March 31 if I will wake up not moving my arms, or not being able to walk. If I knew I could prepare for it, but going in blinded is getting to me.

I also don't know how long I will be in the hospital. At first they told me one day...then they told me at least a week. The weekend after my surgery is Easter and my family will be in town. I don't know if I'll be home or in the hospital. Part of me wants to be home, to be there with my family, I don't get to see them often, and I love spending time with them, even though they probably don't realize it, but part of me knows, I'll just be getting home, and I don't want to be a burden on their visit either, so maybe its best I'm still in the hospital. Its just the beginning of me realizing how much of an extra burden I'll be on family and friends while I go through all of this, and also the things I will miss out on.

*I wrote this blog and saved it as a draft 2 days ago. No one had read it. I reiceved a email from my brother yesterday saying he would like to come down the weekend before or after my surgery so that it would be easier on us all. How awesome is that...he read my mind. I'm hoping they come down the weekend before...it would def. keep me from losing my mind right before surgery...plus I want to hug and hold my nephews and niece on last time before I start all of this.

Going in circles.

I've had ties in the HS community for a couple years now, but in the past couple months, I've reached out to many people, and I'm so glad I have, although, my heart is as heavy as its ever been. I reach out to people because I remember what I felt like before I had support and it was a lonely, confusing place and I reach out to people because I remember how incredible it felt to finally have someone who truly understood what I was going through. I truly love everyone in the HS community, they are a support to me that I desperately need. However, it is extremely overwhelming to realize how many suffer, and how this disease seems to be getting worse and worse and I don't understand why. Am I just realizing how bad its been all along? It seems to me I'm hearing of more and more stage 3, crippling HS, and younger and younger children suffering. I just communicated with a woman who's son is only 14 years old, and is stage 3, at 14, and not only does he suffer from this debilitating disease he is also autistic. My heart hurts, my heart hurts to hear about this child "young man", and it hurts more because this is 1 I know of, which means there are hundreds of others. When will people take this seriously? It seems this disease is progressing ( I may be wrong ), when is enough, enough? When will it become important/prevalent enough that someone does something? My frustration is overwhelming me, and being overwhelmed is frustrating me. So again, I go in circles with this disease.