HS Update

I recently (read 6 months ago) found out that I had HS. I posted about it here.

I had to go back to the dr last week as I had to get a repeat prescription but also needed him to look at my lumps and decide if he felt the medication is really working. For the last two months or so I have had lumps constantly. I was in pain every day. I was uncomfortable every day. To me it didn’t seem like it was working. I will agree that it has stopped in most of the places that they were coming up but I was still getting them under my arms.

He explained to me that as HS usually starts there it means that that is where the worst of it is. The fact that it has cleared up in some of the other areas is a good sign and that under my arms would probably be the last place it would start to get better. In other words once my arms start healing it means we’re onto a winner. He has decided to keep me on the medication for another 6 months.

I am not sure how I feel about it as the medication is really horrible. My skin is so dry that it peels – all the time. My lips are a nightmare. I need to put vaseline in my nose daily for dryness. I am always tired. My joints feel like they have seized up. I feel 90. I miss enjoying things. I miss being full of energy. Also the medication is very expensive and we’re paying cash for it as 2 months worth has pretty much depleted our medical aid. If it works though it will be so worth it. Except in the last two months I’ve been feeling old and tired and in pain. Hmmmm

He has also decided to put me on quartisone for a month. He thinks that will helps clear up the “infections” that are there now and not healing so that the medication doesn’t have to “fight” so hard and just do it’s job. He has also said that if in 3 months I feel it is still not working then we can relook at it.

The asthma pump that he has put me on 6 months ago though is an absolute winner. Usually during winter time I am the first to get sick and stay sick for about 2 months. It usually goes straight to my chest. I am very pleased to say that I have not been sick. I did have a bit of sniffles but that is about as far as it went. I am so happy. I used to think the I was breathing pretty well on my previous pump but since I’ve been on the Symbicord it feels amazing. I can’t believe I used to think I was breathing well. It is awesome.

So that is pretty much the update as far as the HS is concerned. Let’s hold thumbs that the meds work and I can get back to enjoying life again. Well enjoying it more I should say because my life is pretty darn good. I love my life….just not so much my body right now.

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