My war with Hidradenitis Suppurativa @lorihsadvocate-blog - Tumblr Blog

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#hidradenitis suppurativa #hswarrior #hsawareness

What a week! #tgif #catsofinstagram

Too good not to share lol. Repost #adamimmune

I am so thrilled I found #Blackbeanfiesta by #bushsbeans They are amazing! They stopped selling them where we used to live so I was thrilled when I found them here.

#blackbeanfiesta #bushsbeans

Rain

We’ve been having a lot of rain and storms lately so my fibromyalgia has been giving me a run for my money. My infections are getting better and my incisions are finally closing up. It looks like I will be having more surgery, though. I have a consultation with a plastic surgeon next week. My wound care physician and my primary agree that I need a panniculectomy. I’m seriously thinking about seeing if I can get some sort of weight loss surgery done at the same time. I’m not sure if I want to do that, though, because I’ve heard so many horror stories and I know a few people that had weight loss surgery and it really didn’t help. I don’t want it because I care what people think of me. I couldn’t care less what people think when they look at me. I just think that if I lost some significant weight, it might help my HS and that’s the optimal goal. Right now, I’m just tired all the time and don’t feel like going out or doing anything.

This is Jiffy. He’s 2 years old. He is 1 of our 3 cats. We got him when he was 6 weeks old from the guy we used to buy tires from when we lived near Birmingham. Jiffy weighs 18.5 pounds. He likes to eat...a lot. He also loves 📦 to play in and sleep on or in. Jiffy needs to diet. Jiffy needs a treadmill lol. #cat #catsofinstagram #cats #kitty #ilovemycats

#ilovemycats #cat #cats #kitty #catsofinstagram

You know you’ve reached adulthood when you get excited over a new vacuum cleaner. #adulthood #eureka #vacuum

#eureka #vacuum #adulthood

I know how easy it is to feel like an outsider. I know how it feels when you think you don’t matter but you do! You are a warrior! #hswarrior #hssupport #hsawareness #autoimmunedisease #hidradenitissuppurativa #iamhsaware #iwillnothide #depression #anxiety #mentalhealth #dontgiveup #roar

#depression #hssupport #autoimmunedisease #roar #anxiety #iamhsaware #hsawareness #hswarrior #hidradenitissuppurativa #iwillnothide #dontgiveup #mentalhealth

Ended up spending the afternoon in the recliner with a fuzzy blanket. Today was a rough day. I’ve had some nausea and dizziness. I’ve also had a lot of pain. I did get the chance to read up on some research, though. Always be your own advocate! #autoimmunedisease #hsawareness #hssupport #hswarrior #mrsa #pseudomonas #hidradenitissuppurativa #iamhsaware #iwillnothide #fibromyalgia #anemia #mdas #beyourownadvocate

#autoimmunedisease #pseudomonas #hidradenitissuppurativa #mrsa #mdas #beyourownadvocate #hssupport #iamhsaware #anemia #hsawareness #iwillnothide #hswarrior #fibromyalgia

Restocked! I started to take an actual inventory of all my medical supplies and figure when I would run out of certain items and set reminders on my phone to place orders but then I realized that was just taking OCD to the next level lol. I’m crazy but not that crazy lol. #autoimmunedisease #hsawareness #hssupport #hswarrior #mrsa #pseudomonas #hidradenitissuppurativa #woundcare #medicalsupplies

#autoimmunedisease #pseudomonas #hssupport #woundcare #mrsa #hidradenitissuppurativa #medicalsupplies #hswarrior #hsawareness

It looks a lot better than I thought it would. 6 days of daptomycin so far. The arm incision is now closed...finally. The chest incision doesn’t really look any better but I’m hoping for progress. This is why I try so hard to tell others with Hidradenitis Suppurativa not to take antibiotics unless your doctor can confirm with a culture that you have an infection. I spent years on antibiotics without active infection and now the antibiotics that I’m not allergic to don’t help because I’ve built up a resistance to them. #hidradenitissuppurativa #hopeforhs #antibioticresistance #pseudomonas #mrsa #hswarrior #hssupport #hsawareness #autoimmunedisease

#antibioticresistance #hswarrior #pseudomonas #autoimmunedisease #hopeforhs #hidradenitissuppurativa #mrsa #hssupport #hsawareness

Buying antiseptic cleanser by the gallon is just easier and more reasonable in price. I can’t use Hibiclens because of the red dye. This does not have the red dye. $44 a gallon is a really good deal. #antisepticcleanser #hidradenitissuppurativa #hswarrior #hssupport #iamhsaware #iwillnothide #woundcare #wound #autoimmunedisease #mrsa #pseudomonas #infection #infectioncontrol

#hssupport #wound #antisepticcleanser #infectioncontrol #iwillnothide #woundcare #iamhsaware #hidradenitissuppurativa #mrsa #autoimmunedisease #hswarrior #pseudomonas #infection

Snapped a picture of this graphic explaining the veins and arteries in the leg in my surgeon’s office. It looks like a map to Florida to me. #healthhumor #veins #arteries #florida #hopeforhs #fibromyalgia #autoimmunedisease #hidradenitissuppurativa #hswarrior #hsawareness #hssupport #chronicpain #chronicillness #laughter

#hswarrior #chronicillness #hsawareness #healthhumor #hssupport #arteries #veins #hidradenitissuppurativa #autoimmunedisease #florida #fibromyalgia #chronicpain #hopeforhs #laughter

My Mind Won’t Turn Off

I’ve tried relaxing, meditating, praying, and just laying in bed but my mind won’t stop. I’m worried that the insertion site of my central line is getting infected. It’s red and a little swollen and I’m having some pain. The problem is that I don’t know if it’s because I’ve only had it for three days or what.

I knew the risks of infection but this could be the one that kills me because it’s in my jugular vein. When the nurse came out on Friday, I explained to her that they said I could remove the neck bandage that day but I couldn’t take the chest bandage off until Saturday. I figured that she or another RN would come out to do a dressing change on it but she said that I could just change it. Well, it’s not like the thing came with instructions so I had to google instructions. I think we did it correctly but now I’m not so sure.

My regular nurse is changing jobs and I’m afraid that I won’t get the same quality of care now. My regular LPN is great and I’m glad I still have her but there are some things that require an RN to visit. I just feel like my wound physician and surgeon are giving up.

#healthissues #infection #hidradenitissuppurativa #hsawareness #hswarrior #hssupport #hopeforhs #autoimmunedisease #intravenousmedicine #groshongcatheter

I was able to remove the neck bandage today. Looks better than I thought it would. Still swollen and sore. My throat has been sore from the intubation tube. Trying to drink lots of fluids. I’ll be able to remove the port bandage tomorrow. Sorta dreading it. Started my daptomycin infusions today. #antibiotictherapy #groshong #hopeforhs #hidradenitissuppurativa #hswarrior #hssupport #hsawareness #iwillnothide #iamhsaware #autoimmunedisease #mrsa #pseudomonas #godsgotthis #roar #healthissues #positivevibes

#hswarrior #mrsa #positivevibes #roar #iamhsaware #pseudomonas #hidradenitissuppurativa #iwillnothide #autoimmunedisease #hsawareness #hopeforhs #healthissues #antibiotictherapy #hssupport #groshong #godsgotthis

Nothing like playing with artificially intelligent sarcasm! #funwithsiri #siri

#siri #funwithsiri

Hidradenitis Suppurativa is not a pretty disease. It steals everything away slowly and painfully. It attacks physically and emotionally. It’s destructive. It’s torturous. My HS is migrating to other areas of my body now including my face and neck. It’s getting harder to cover with makeup which makes me isolate myself. My health is failing. I have so much infection that I often have to take naps during the day. On Thursday, my surgeon will put in my Groshong catheter to try more antibiotics. If they don’t work, I’ve decided to stop treatment. It’s not a decision that I’ve made lightly but, since I’m allergic to so many antibiotics and Humira, my doctors are running out of options. I can’t keep up with treatments that are causing me to go into more debt. I’m battling depression again and yet I have peace. I’m anxious about Thursday. I’m just praying and trying to put it in God’s hands and leave it there. I’m just lucky that I have such an amazing support system but it’s hard not to feel like I’m failing my family and my community. #godislove #hidradenitissuppurativa #depression #anxiety #hswarrior #hopeforhs #autoimmunedisease #iamhsaware #hsawareness #groshongcatheter #antibiotictherapy #community #hidradenitissuppurativaawareness #iwillnothide #hsfoundation

#hswarrior #iamhsaware #hidradenitissuppurativaawareness #hopeforhs #antibiotictherapy #iwillnothide #godislove #autoimmunedisease #depression #groshongcatheter #anxiety #hsfoundation #hidradenitissuppurativa #hsawareness #community

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