I have to say that I owe alot to my illness. Before the diagnosis I was very confused.  The mystery behind the bumps, lumps and being very ill, left me angry and in limbo many times.  

Now that I have a name for the illness, I now have a place to start with my health.  Unfortunately it took a long time.  There were many years of frustration as I attended numerous medical appointments each year. Each appointment left me feeling defeated.  But I would let that defeat subside and take another run at trying to discover what ails me.

The experience has me quite humbled, I am sure many others out there can relate, regardless of illness.  

I have also learned alot about myself.  Good and bad.  Now I have a direction to fix the bad.  I had issues that needed to be dealt with and I am enjoying that journey...to my surprise.  

 As I have also learned that I am fixable..lol. I am human as well and I should cut myself some slack.  

Right now..right at this moment...I am very comfortable with my illness, who I am (how I wish I had this knowledge in my 20s!..LOL), and loving the good relationships around me.

It just feels great to feel comfy with myself..and I had to share that. :P

May you all have a great day. 

Just had to say that I wish all the mothers out there a very happy day this Sunday.  New moms, older moms...:P All under the rainbowtitle of Mom...you all do great work.  

Let your kids hug you..or surprise them with a hug.  

We all know that mothers never stop being moms, all year round.

But enjoy your dedicated day. :P

Well this is a big step for me. But I feel safe here at this site...so here it goes.

I have always had a very tumultuous relationship with my mother.  She struggled and just couldn'tcope therefore we had a very poor relationship.

In my teens our situation was really bad.  She was verbally abusive but also physically abusive to me as well. To the world they saw a lovable woman ( a nurse) who was the life of the party but in private had broken many of my bones and my heart as well.  

It got to a point where we were separated by the courts.  Not by my doing either, the school had no choice but to intervene. Ever since then she walked around as the victim and never once took responsibility for her actions.  

The result was me living away from her for 2yrs.  During those two years, I stayed with strangers (foster home) and attended counseling.  Oddly enough she was supposed to attend and the courts let her get away with not attending.  

She cried crocodile tears to have me back, so I returned after 2 1/2 yrs.  Then about 3 months later , just out of the blue while I was visiting a friend, she told me to not come home.  She has a horrible temper and I was a 1/2 hour late for my 6pm curfew.  I missed the bus. Called her at work and those were the words she uttered to me.  After name calling etc, she just said you are not my problem anymore. (Words I have heard all my life from her)

I never drank or did drugs, I was always on the honor role at school along with an all-star athlete title, a thriving artist-which she never acknowledged, despite the praise from teachers who thought I could go on to a great art college.   Now poof..I was out with no where to go.  Thank goodness my friends were helpful.  I was allowed to stay ...but I got my act together..got a job for that summer and my own apartment.  Been on my own since then and did well for myself.  Something my mother is in denial about.  She lies all the time...just one of many selfish acts. 

When I had my HS surgery in 2005, I decided to call her. I remembered her having problems in the same area as me.  Now I had a name etc to the illness, I felt she should know.  We would do this over the years..not talk then talk.  My mother was great at denial. LOL.

That surgery did not go as planned and scared me , hence the call to her.  She fooled me again, faking interest and then come here and make it all about her.  She saw first hand as I got daily nurse care and needed assistance.  Which my loving hubby was very glad to assist with.  

I think it really bugged her that I had a very loving home, loving relationship etc.  Stability as well.  She has a string of relationships with all the wrong people and would always come running to me.  Then she started up her selfish acts here in my home.  Broke promises again etc. just so she can "have her fun" as I laid there in bed, unable to walk. Some days I lost my sight as well.  All that and she still hated me getting attention. Absurd!

So I did something I never did..I stood up to her and told her off.  Her crazy theories and lies..I told her to get out.  I have not seen her since 2005.  

As I go through counseling, I realize I was nothing like she said. It was all her own fears and selfishness.  No one else around me sees what she sees..if anything it surprised my hubby and friends.  

It is unfortunate but it was needed.  Right now I am no longer held back by those mental chains she had on me.  I have a good foundation of understanding that I am a good person and I have done well for myself.

Too bad she will never know.  

Sorry this was not more uplifting..but really it was not with a sour note.  Every Mother's Day I would get teary eyed, knowing that I cannot even say hello.  Because I let her go..I am not nostalgic about this Mothers Day.

I say its her loss!

I shall post a mothers day note for all. 

Well...I had a HS bumpie come up and it was painful. By last Saturday, it was getting worse and I put on my disguise of "I am okay", on my face. Sunday it was unbearable, the location is in my left pelvic area, so sitting was a challenge.  I did the normal things I do to take my mind off of the pain.  Anything to distract me.  Hobbies, games, etc.  Nothing did the trick.  

Monday I was pale, and winced everytime  I had to breathe or sit forward. All this week I could not get to what I needed, tending to cleaning the place.  Anyone who is ill would know this predicament.  

Tuesday the HS bumpie burst and bled.  I was sitting there thinking why do I feel really fatigued and sick? You would think that since I have been through this countless times, I would be used to it. No...it just gets disheartening.  

It continued like this Wed as well. If I sneezed the bumpie would bleed.  So it didnt take much.  Relief is slow to feel and that left leg and thigh numb from so much pain , that I cannot feel the blood running down.

Today I can move a little more and there is less blood.  On the other side of things, a couple of years ago, this bumpie would stay for months before it decided to bleed/burst.  Now that I did my routine of soaking etc, it brought the relief sooner.  

 Right now the last four days have been hell.  My stomach is nervous from the golf ball of pain as it pummeled the whole left side of my pelvic area.  How odd that I needed a cane on Monday to move and today I am moving on my own.  So many people are in disbelief about my illness and what it does.  If they could only walk in my shoes for a day , four days, or a month! Lol.

I guess if we all could walk in someone else's shoes..there would be alot more understanding in this world. 

Well in the past few weeks..I have had a good friendship of mine tested...unruly tennants next door and HS pain that was overwhelming.

As I rode the emotional rollercoaster of all those events and I didn't want to allow myself to trust anyone, there was a hand that came through the clouds.  It restored my faith in the human race.

Prior to the HS diagnosis I was like many others, working , juggling responsibilities and very involved in sports (hiking/biking/camping/canoeing/kayaking/tennis..etc you get the picture. LOL. ).

Every time this year, since my HS surgery in 2005, I always debate as to whether we should sell our kayaks.  They are stored locally downtown.  Right on the waterfront.  Great way to not have to leave town each weekend, we can kayak near home.  

 The people at the kayak storage place are always friendly.  They hold BBQ socials each week, offer safety courses along with courses to keep up or improve your paddling skills.  Don't own a kayak/canoe?  Then you can rent one from them.  You can take one on one classes, or a group class to save money.  

It was in 2007 that I started asking them to just keep an eye on our kayak slots.  My hubby is so bogged down with being the main bread winner/cook/errand runner/grocery shopper..then come home and be my nurse.  I wanted him to not worry about the kayaks.  Not wanting a hand out but just to let them know, at this time the kayaks are not being used.

In 2007 the wife of the owner gave us a big discount.  They even forgot to collect our fees from us and I sent the cheque and reminded them..LOL.I was flattered and red faced from embarassment as stated before, I just want eyes on the kayaks, not a hand out.  I expressed my gratitude and was touched by their kindness.  

This year when the membership dues issue came up, we sent our cheque.  I also let the owner know that we won't be kayaking this year, please watch our spots.  He then sent an email and said he had our previous email in the files.  He asked what the doctors were saying etc.

My reply was to give him a small account of what I was going through so he understood our lengthy absence.   Everyone remembers us from the socials and our volunteer times down there as well.  He didn't realize I was having a little battle of my own and reimbursed the whole fee for the yearly storage.  

I was taken aback. I won't lie, as I read the email, I cried.  I just busted out with big sobs.  I have been through some tough moments lately and I never shed one tear. Then this very generous action gets me sobbing.  

It touched me deeply to have such generosity come our way.  After the HS surgery we were thrown in the deep end and left on our own.  I am sure many of you can relate, regardless of the illness.  To have this hand come through the clouds...has restored alot of faith.  

What I will do is make sure that I keep working on getting more mobile.  If I cannot paddle next year, then I will head down to their office and volunteer.  I will keep volunteering for them as well.  They are always a happy group and kind..but they have gone above and beyond.

I also came here, at MDJunction and had my faith restored.  That was mainly due to Carmen- leader of the HS group.  Such kindness  is including those I have met within the HS group and the other groups I am joining. 

I have never felt lucky and now I do.  Thanks for the warmth everyone...and the hand through the clouds.  

The least I can do is return the favor. This is why I am contacting those within our HS group and letting them know they are not alone.

Hugs and smiles all around.  

Every HS person knows how hard it is to lose weight.  Especially if your HS wounds are active with ooze etc.  Currently Ibattle physically and emotionally on just trying to lose 5lbs.  The reality is I need to lose more weight than that.  But as an HSer, 5lbs might as well be 50lbs.  I am sure others with other illnesses can relate.  While ill, your immune system is low, your body can barely cope, so weight loss is desired but cannot be done.

 With HS, everyone around me seems to believe if I lose the weight, the HS wont be a problem.  This includes medical personnel who have no clue.  Well all my life I was always involved in sports.  My weight was always just right.  Except for when HS would get a grip, then I would have unexplained weight gain, but I could still play all those sports and eat right. 

Along time ago, I dropped 50lbs with no gimmicks.  Went back to my sports, ate right, kept my stress levels low.  Not easy as breaking my habit of emotional eating was not easy. Here is where you deal w/past/present demons that held you emotionally.  No mysterious pea size bumps either.

Then one day those bumps came back and no matter what I did physically, the weight was piling on ..and fast.  Nothing changed, I was still eating and being physically active.  What was going on...?  It was HS ramping up for the big one.  The one that led me to the surgery.

Okay..back to where I was going with this ..lol.  I have been making dietary changes.  Within the last year there has been great success.  To others on the outside, they would hardly notice.  But to the HSer its big.

I have been able to calm the belly bloat.  I am not that tall and to have my belly expand so much made me look like something that should float above a parade lol.  Not to mention the fact that my clothes were not fitting.  As a woman with monthly bloat, I have a few different sizes to accommodate.  Even those sizes were not cutting it. 

I have the bloat cut down, my weight is a little lower as I head into my monthly time and I will take it!  With HS the weight would always go back up to a certain number.  Losing one pound was difficult.  Harsh reality with HS, but it is what it is.  Now I am bouncing back to a number but it is 5lbs less than the other number..woohooo!

 The only thing I have learned throughout my HS ordeal, is that its all baby steps.  Am I cured? No.  But the inflammation & weight is down, allowing me to feel good and have more mobility.   Feeling good while ill is no easy task, no matter what illness you have.  

So yes..I will take it.  Celebrate every little thing I accomplish while having HS.  I can see it...slowly my body is winning over HS.  

I rather not have to measure my healing process in years, I would rather months or even minutes ..lol. The reality is ..its not going to happen.  But as long as there is healing and small celebrations, that will only mould me into a better person.  I now stop and smell the roses and enjoy all things big and small.

Today I feel better mentally, about my friends visit.  I saw the signs etc.  

I am now being told that since I know of her lazy ways etc, I should not have expected much.  I thinkwhat this person telling me not to expect much, is for my own good to establish boundaries.  This way I can keep selfish people at bay.  Therefore protecting myself mentally in a better way.  

 I think that was what the person did mean..LOL. The person in question is my counselor.  

 I did discuss with  her  (my friend) that I am not well and tending to her would not be an option.  This was discussed prior to her purchasing a plane ticket.  She reassured me at the time that she won't be expecting anything.  The problem here is that she has no memory.  Lets just say she polluted her brain too much in the past.  Now she claims memory loss/ignorance to stating such a thing.  

 So I set some boundaries for this friendship. It is the only way I can trust again.  

I don't know if I mentioned this but I had the instincts that she was taking stuff from my cupboards without my permission.  That was a big breach of trust. The kicker is I gave her the whole weekend after her visit to cop to it.  Nothing.  When I confronted her, she finally admitted to it.  

I have helped her so much, turned my back with trust to her and let her into my home.  I had others do this previously, while within my home.

So this was a big kick in the teeth.  As I did not expect this kind of  behaviour from her, nor should I have been suspect she would have acted this way.  All that on top of her being too lazy to even take her own dishes to the kitchen. 

Live and learn.  Back to the drawing board in terms of trust issues..lol. 

Well I just had a friend of mine visit.  She was there before I was diagnosed with HS. She was there when my surgery didn't go as planned as well.  We meet up online to talk every andgame every weekend.  

She comes here while I still have 9 HS sites.  My fear was that I would have to run around etc. and this was relayed to her and my hubby. Both calmed me by hubby saying its good for my morale.  My friend saying I don't need much..don't worry.  In reference to another friend she visists regularly, "when I go there I help out".  So don't worry about it.

 Well when she got here, I had to wait on her.  My HS flared and by 48hrs later I was exhausted.  She was here for 7 days!  I was ready to slap her and show her the hotel listings.  Not only that...I haven't been able to work and she is working.  Granted she is not working , not the best wages.

But since when did her vacation become my workload?  This is a 31yr old with no clue.  

Right now I am telling her I am too ill, not far from the truth, to hang with her like normal this weekend.  

I developed a huge HS lump thanks to her stay.  This week I cannot move thanks to all the movement of last week.

I struggle to stay strong and make it through the pain.