Next surgery...

Had my pre-op appt. today. My next surgery won't be until March 1st. Its a good thing! I was rushing to do my next surgery because the resident surgeon that I adore is leaving at the end of Jan. However, she has agreed to come back on March 1st for my case, and may even be getting a permanent position at MCV. I'm so happy! The reason for the delay is I was supposed to have a double mastectomy. I was literally losing sleep and it truly scared me. She told me at the beginning of my appt, that she was going to do everything she could to prevent that from being reality. She took pictures of my chest, and went to talk to some other surgeons. Luck have it, the HEAD of plastic surgery at MCV was there. He looked at the photos and said he would take my case with her. They came up with a plan, and they will be doing a different procedure. Basically they will remove the lower part of my breast, and the center area, then they will remove the fat from my upper stomach area (liposuction) and pull the skin up and form that skin into new breast. I will be deformed looking and have horrible scars going across my breast, but I will still have a shape to look closer to normal in clothes. Its going to be a pretty radical surgery, but its a heck of a lot better than removing them. I'm still terrified, I have no idea what to expect, but its comforting knowing that the head of surgery and my favorite resident will be working on me. I'm nervous now, I can't imagine how I'll feel in Feb!

She also looked at my botched last surgery (which she didn't do) and said she is going to make sure it is taken care of. Which means 2 reconstructive surgery sites to fix what the last surgeon did. The way it has healed is why I keep getting ulcers on the incision. I really hope she gets the permanent job there, she really has my best interest at heart, which is rare with me and doctors, and this damn HS.

Here are a couple pics of the BOTCHED job.



Not a great angle but you can see the "fold" in the arm pit, which is where the ulcers keep popping up.



This is my arm at the front where he sewed me together and it left a large lump, there is also one on the back on my arm, which I obviously can't take a pic myself..lol.

3.5 week post op

I'm a little over 3 weeks post op and after a trip to the hospital a couple days ago, I'm feeling much better. I was having a rough time so they removed my last drainage tube. OMG did it hurt. I've had several drainage tubes removed now but when they pulled this one out, it seemed like a eternity, I know everyone in the hospital heard me scream, when I looked at it, it wasn't like any of my other drainage tubes, it was square, huge, and it was about 9 inches inside of me, I seriously hope I never have to get a drainage tube like that again. But now that it is out, its amazing how much better I feel. I'm still extremely sore, and hurt, but overall, I feel like a different person. Where the tube was inside of me I was having pain, they had it positioned going up my back, and boy my back hurt, I'm still sore on my back, but it is def. getting better. I have quite a few weeks left of healing, but I believe I'm over the hump. I drove today, not well, lol. I had to go get my prescription from the drug store not even 5 mins from the house, but it hurt, and I won't be doing anymore driving for a while. I wouldn't be able to react quickly if something were to happen, it was painful, and just not worth the risk. I took my 2nd shower the other night, and did a lot better, so I'm going to start showering instead of bathing in the sink, which is nice! I go back to the surgeon in a few days, and hopefully they will think things are doing better. I have a small infection under my arm, they think its a yeast infection...haha...so I'm using creams and powders, but it itches like crazy. I've been taking 2 benadryl 3 times a day, so I'm very sleepy most of the time. Think I might drop down to 15 mg of morphine this coming week, but I'm not sure I'm ready for that, I want off of it, but I don't want to be in tremendous pain either. Hope my 5 week update will be even better.

2 weeks post op pic

2 drainage tubes gone, 1 to go.

1 week post op pics

SURGERY 2 LEFT AXILLARY AND TORSO

left arm torso

Surgery Tomorrow

I'm getting the nervous jitters. I was so scared for months for my first surgery but this time I didn't think about it much until the last couple days. All day today I had this gut feeling that something bad is going to happen, I didn't have that before. I literally thought about canceling surgery several times today. Everyone says listen to your gut, but this would be major to back out last minute, and I need to get it done. I just hate having this feeling the night before major surgery. I hope everything turns out okay, obviously. I can't believe its time to go through hell again already. I at least know what to expect now, but the first few days are incredibly difficult. Sometimes I wonder why I'm putting myself through this. The HS came back within 2 months before. I guess I just don't know what else to do and I feel I need to be proactive in treatment instead of just throwing in the towel and deciding to be miserable and in pain for the rest on my life. I'm not a perfect person but I don't think I deserve this hand I've been dealt.

I hope things go well tomorrow and healing is easier than last time.

HS wristbands. Show support.

I am VERY thrilled to announce that my HS friend Rhonda Cain-Smith made this vision reality. We are now taking orders for the new Hidradenitis Suppurativa wristbands. They have been ordered and will be available for purchase on June 1. You can place your order now, which would be great and then we will give you information on where... to send the money on June 1st. The cost is $1.00 per bracelet plus shipping! Shipping cost will be cheap and there will be no hidden fee. This is simply for the joy of doing something for the HS community. I hope you all will order several to share will your friends and family. This can be used as a educational tool.The bracelets are a beautiful TEAL color with the words 'Hidradenitis Suppurativa' written on them.

We discussed color and we thought this was a beautiful color that was unisex.

Sorry this offer is only available to US members at this time, if you live in another country, you can email me individually and we can try and work something out, but remember shipping would be higher.

Everyone please give a huge shout out to Rhonda for doing this!
You can email me at foxandsox78@yahoo.com if you have any questions.
Thanks, I'm super excited about this and hope you are as well!

COUPLE SURGERY PICS

arm

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.

Pre-Op w/ surgeon

I had my pre-op appointment today at MCV plastic surgery. Not much to say...they went over everything I will be having surgery on..bilateral ear lobes, bilateral axilla, bilateral torso, bilateral breast, bilateral lower extremities, and bilateral groin. They said the won't know until day of surgery exactly what they will operate on first but they are hoping for bilateral axilla and torso. They said it will take at least 3 surgeries to complete everything with other operations between for skin graphs. One of my major concerns was what I would end up choosing as far as surgery on my breast, today I told them I decided to remove them....I'd rather that then be dis-formed, they decided they would wait on that surgery till the last to give me more time to decide for sure since its such a big decision. STRESS. :) I will be in the hospital probably a week could be longer depends on how they can close each area. They will use staples to close some, "skin flap"(http://www.drugs.com/cg/skin-flap.html) to close some, and some will be left open and need graphs. When I get home they will set up a home care nurse to come out a couple times a week. They will have to insert drainage tubes that I will have for a little while, but they shouldn't be that big of a deal, just need to be emptied. Surgery is March 31...6am. I still have a couple more pre-op appointments, but nothing big (I hope) until then.

Medical Update: All things happen for a reason.

I've been out of the hospital almost 2 weeks now, and unfortunately things aren't progressing very well. I'm still dealing with pain and inflammation on the left side of my face/neck/ear. I go back to the doctor tomorrow for a follow up and more test.

This recent stint in the hospital has caused my surgery to be postponed to March 31. I was supposed to go under the knife in 2 days. I've awaited this surgery for months and months and was so happy the time was almost here...and now I sit...waiting, yet again. I have mixed emotions about this, I'm bummed, and I'm at peace. I know that doesn't make much sense, but I believe everything happens for a reason.

This infection was literally out of the blue, overnight thing, which is pretty rare...normally the infections take days to grow, and I have warning signs, I know my body and my disease...but this literally just popped up. I know you all saw me bitch and complain that I had 23 IVs in the hospital and they finally put a PICC line in. Well the reason I had to get so many IVs is because within minutes the vein would clot. Sadly the same thing happened with the PICC line, which is apparently rare...when they went to pull blood, it had clotted and they couldn't get anything. When I had my blood drawn at my MCV visit last week, it took 3 IVs because they would start drawing blood, then stop. They had 3 nurses/techs working on my IV...finally they got one, they drew one tube of blood and one of the nurses looked at the others and said "do you see this" as she is holding my tube of blood. One of them responded "shes clotting fast..looks like mud" this was within secs of them pulling it. They then stated no wonder I couldn't keep and IV. This is something I'm currently reviewing with my doctor, but it looks like I have a clotting disorder which is definitely new. The revelation of this explains a lot about how my hidradenitis suppurativa has been affecting me lately as well. My point in this long story is, I honestly feel this current infection was God's intervention to not have the surgery on Feb 3. I believe there are still some underlying medical conditions that could possibly be fatal to me on the operating table at this time. I will be undergoing a lot of blood work and test to find out why I'm still not healing, and why my WBC (white blood count) is still high, and why I am clotting so fast. I want to feel safe on March 31 when I have the surgery.

For those of you who are tired of hearing about my surgery, I'm sorry. I know my explanation of the surgery to every one is simply, I'm having my skin removed. I don't know how else to explain it simply. This surgery is very serious, and will literally consume my life for a very long time. I will try now and explain it in a little more detail. The actual surgery name is Radical Wide Excision Surgery. The first surgery they will be removing the skin under my arms, torso area, down to the muscle. They will also be cutting the "chicken flap" of my arm off, removing the diseased skin and stapling it back together. The torso area will be left open to heal, a large open wound. They are also going to try and do my breast in the same surgery, but they said it depends on how much they remove from the torso area, if they will be able to do it in the first surgery or not. If they are able to do my breast, there are two options. A. they can cut off the bottom half of my breast and staple it back together which will heal as "cones" (I'll have to pad bra's to look normal, and my breast will completely be deformed) B. I can have my breast removed. (This decision as a woman is very hard). They don't know how long I will be in the hospital but they said I should be able to come home quickly. I will then have a home care nurse to help with wound care. The doctor told me "You will be in pain, a lot of pain, there is nothing I can do or give you to make you comfortable" of course they will give me plenty of pain meds, but he was just letting me know if I decide to do this surgery, there is no easy way out. I'm going to post a couple pics, one pic is day 3 after surgery, the other is day 32...these are very small considered to what I'm having done...I'm having the entire torso on both sides removed, but they will give you an idea of what I'm up against. They are very graphic, please be advised.

2010

I had a wonderful night bringing in the New Year. I hung out with some old friends, and it was nice just to get out of the house and spend quality time with people. It was honestly the best New Years I've had. Just a good time, with no drama (which tends to follow me). I'm excited about this upcoming year and hoping it brings only good things. Although, I am nervous since I will be starting my surgeries Feb 3. So this year will be spent in and out of the hospital and recovery. However, I'm hoping this journey will be a start to a new life for me. Fingers crossed and prayers lifted it will all be okay. I'm ready for this battle in front of me, and ready to begin a new chapter in my life. I hope everyone has a great year, a positive year, and grasp the true meaning of living.