Back from the dead

The first monthly anniversary of my Ileostomy đź’–

And I am happy to be here!

My recovery has been going smoothly so far, aside from being absurdly tired I have not had problems at all!

My stitches are removed, my scars are healed, I can walk short distances and lift enough to take care of my home and myself once again.

I have been able to taper most pain meds to half their dosage, and am alternating days with prednisone. The only actual pain I get is when I am active, but it is managable and considerably less than I dealt with during most of my Crohns flares!

My Ileostomy has been such a relief. No more running to the bathroom, no more sleepless nights, no more constant pain. I am relieved of a great burden.

It does not bother me that I carry a bag now, it has so many advantages that I can’t think of any reason to want to go back. The changing of the bag can be inconvenient, because I have to do it before breakfast but if that is all I have very little to complain about of course.

So yeah, 14-03-2018 is going to be a day to celebrate. My stomaversary is definitely a party!

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Morituri te salutant

Those who are about to die greet you. Sounds a little dramatic? It may not be exactly true, but a similar process is happening to my mind and to a larger extent my life as I have known it is coming to an end. 

I will soon undergo major, life changing surgery. When I wake up, my life will never be the same as it was before. If I do not wake up, well, the same applies. 

I can assume I will wake up though, and I look at this process as a chance to shed my old skin and burdens and exchange them for a new me. 

I see the surgery as a challenge I must face to rise to the prime of my ability and become the person I am now barred from being because of my Crohns. By facing the challenge I will take back the reigns and defeat what holds me back now. 

I will face a physical battle, my body will be challenged along with my mind, so I have adopted the mindset of a warrior. It is not death I fear, but a life not worth living. My abdomen is already covered with scars, I can take the pain of one more.

Because I fight to see a better tomorrow. 

What I am not going to do in 2018

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I love Wolves. Since as young as I can remember. So 2018 has got to be my year with this coming up!

But here is a list of five things I am NOT going to do in 2018.

  1. Lose weight. Because I get an Ostomy surgery, I will have to remain at my current weight indefinitely because I might otherwise suffer from complications or worse need to get a new Ostomy fitted. So for the rest of my life, I will stay at this weight. I will never be thin, EVER. Not that I am moaning about it, I have accepted my size long ago and I do not have any health conditions associated with being heavy.
  2. Make resolutions that I will not fulfill or that are social programming. I am supposed to want to lose weight,  I am supposed to want to work full time within a year of my recovery, I am supposed to start thinking about children because I hit the magical 30 etc. I won´t start doing any of those things. I never wanted kids, I want to work but probably never full time because I like freedom more than money and I can´t lose weight safely anymore.
  3. Tolerate people who are passive aggressive or have hidden agendas in my life. If I spot you, I just leave. I won´t call anyone out, but I won´t take any controlling behavior by anyone either. If my boundaries scare you, you don´t belong in my life. They are there for a reason, and PTSS is not only a disorder; it helps me identify people who are potentially dangerous for my health.
  4. Apologize for being different or ill.  I have Aspergers, I will have an ostomy bag, I will be looking and acting different from plain Jane the rest of my life. Not because I want to, but because I am wired to and because I have a serious disability. And that is OK. I am not going to keep ´sorry´ as my middle name for things I can´t control and didn´t choose. Whoever doesn´t like that can freely leave. I have apologized enough and it is time to claim my space in this world.
  5. I am leaving my teenage insecurities behind. It is time to step up and claim 30 as my official passport to adulthood, and allow the confidence that comes with it to shine. I have been through much, and I am a tough cookie. I will no longer try to please everyone and I am going to go my own way forward without fear. I will try to stop excessive worrying by meditating and through cognitive behavioral therapy  I am a strong, confident and happy person and 2018 is going to be my time to show it!

For it can only get better

614434b3ca3d3117c0d8745148fc685d1727693060.jpgMy life can only improve from here. Yes, it is at a crossroad. And yes, it is scary. But it is also liberating, because there is no more uncertainty.

I will have major surgery in the new year, and that is risky. Complications might occur, the worst being that I might die. Yes, that is possible.

But no, you should not worry. At least not more than you already do. Because I am getting the surgery for my colon, that does no longer work. You heard that correctly, my colon does no longer work. So if I don’t remove it, I certainly have only one fate. I might look ok, but I am not. Every day my situation can go from managable to fatal in the flip of a switch, and me and my medical team can only hope I make it until the set date for surgery without major organ failure.

Surgery gives me the chance to survive all that. And what’s more, it gives me the chance to reclaim my life. If surgery is succesful I will carry a bag on my belly, but that bag will give me freedom.

Because I won’t need to go to the toilet 10+ times a day.

Because I won’t be in pain every day.

Because I won’t lose blood constantly.

Because I won’t need prednisone and other awful medications.

Because I will be able to exercise without fear of embarrasing accidents.

There is so much to gain from this, that I am sure it is worth the pain and the recovery time.

That is why I am hopeful.

 

The time has come

And I am ready.  This is the Crohns & Colitis symbol, and this week is Crohns & Colitis awareness week.

How fitting that this is the week I am getting my surgery and likely, a colostomy. A week to remember for me, and I hope it will be week to remember for you too as a reader, in the future.

Because Crohns and Colitis are invisble illnesses, too little is known about them. Too many people think they are just incovenient bathroom illnesses, while they are severely debilitating and sometimes fatal diseases.

So far Crohns has almost killed me twice, and now I am up for life altering surgery. My colon & rectum will most likely be removed. This means that I will never have to use a bathroom again, but also that my body will be permanently altered and scarred by the disease.  

The cause of Crohns and Colitis is still unknown, and our medication does not cure our disease.  It can only repress it, which does not work for me. My body rejects the medication, which is what got me to this point.

 The only other option to possibly relieve me from a lifetime of severe illness is removing the part of my bowels that Crohns keeps attacking in hopes of changing my life for the better.  
And I am not the only one. About 75% of Crohns patients need surgery once or more in their lives. Yet, research is limited and funding is minimal because people do not understand how serious this condition is.

Please share my story or otherwise help people with this illness, we need a cure and we need a voice!

I´m 30. Now what?

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Ok. So I am 30 now. I have officially joined the adult club this August, so I am actually a bit late with this post. But that suits the post, because I seem to be late with everything. I thought most people had their life together when they reached 30. This post shows my more vulnerable side, please keep that in mind when you read it. I am not always strong and confident.

So I always had 30 as a milestone in my head, I told myself that if I didn´t have things together at 30 I would become a nun. Well guess what, I don´t have things together but becoming a nun doesn´t seem like a solution to it either.

I feel like I am stuck in a perpetual state of college life, I still live in a studio, I have friends but no children and no steady relationship. My life is resembling Bridget Jones diary more and more, but somehow I doubt I will end up marrying a millionaire when I am 35.

Really, how do other people do it? Most people I know are starting to have kids, building families, have been in relationships for years. They have careers, a good education, a loving family that supports them.

I have just started what I hope will be a career I can be successful in, but now it’s on hold for my ileostomy surgery. I have no clue how I am supposed to date anyone, when I was younger it seems like I just stumbled into a relationship wherever I went but now I don´t even know how to talk to someone I might fancy. It seems that with the years I have become less confident in love, not more confident and certainly not more stable.

I seem to have a more steady social life on the surface, but I always wonder how long it will last. The only friendship I ever had that lasted longer than five years ended this year. I can´t help but wonder what my social circle will look like in another five years.

I have been in therapy for the past 12 years, yet sometimes I feel like I am not getting anywhere. Many of the things therapy is supposed to do, I have not yet done. I am told I am mentally stable, and I guess I am because I am rarely depressed or anything despite the difficulties being chronically ill throws me. But that is only what happens in my head. I can have all the confidence in the world but if the results don´t show in my life, what is the point?

I know many of you who read this consider me a strong person, and I guess I am because I have not let my illness bring me down and I have battled through three extremely tough years without relying much on an anyone. But it has taken it´s toll, because I am now a 30 year old without proper education stuck between college kids without a solid family unit. And that sometimes brings me down because I don´t know what to do about it.

Being strong can be lonely you know. I face a battle every day with my body, which takes a lot of energy off what I want to achieve in life. Most of the time I am busy trying to get comfortable and not be in pain or tired, not busy working on a future. I don´t even know how to get to that future with all the things that are holding me back, and without a support network things are always so much more difficult.

I am also getting an ileostomy soon, which I hope will provide me with a fresh start and a new perspective on life. Maybe after all 30 IS just the beginning.

I am grateful for the friends I made this year, I do love you guys, and I am grateful that through my aunt and uncle I am getting some of my family back. But at the end of the day, I am usually doing things by myself.

If you got your life together at 30, can you please tell me how you did it?

You don’t have to be friends with everyone 

When you argue with someone and others get involved, they often tell you to be the ” bigger person” when you adress bullying behaviour. You’re supposed to sweep the issue under the rug because people like it more when everyone gets along well. 

I see this a lot in activist spaces, prevantly the ones that claim to be inclusive and against all forms of discrimination and oppression. I have been personally threatened several times, and when I adress this I am told to forgive the other person and move on, even if the person is persisting in their behaviour because calling out such things is uncomfortable for others. 

Well, I am sorry to say this but I have found that inclusive spaces are a fairytale unless you are willing to put on a facade of kindness and repress your true feelings in order to keep the peace.

I am not. I am not willing to sacrifice my personal safety or integrity to keep other people comfortable. I am not willing to violate my boundaries or principles because someone out there doesn’t like them. 

Inclusive spaces should crack down on abusive behaviour and not support it, but at the same time people providing such spaces should realise that not everyone gets along all the time and that it’s perfectly OK if people do not agree or do not wish to interact with each other.

A perfect world does not exist, even with the best of intentions. Whether you agree or not with someone’s decision not to interact with another is not relevant.  It’s not about you, and if you do like that person that is fine but you cannot negate or ignore the person who doesn’t just because you think differently.

That is not respect or inclusion, that is gaslighting. To tell someone that their experience is not valid is gaslighting, no matter how wrong they may be. If you disagree, just let them be. Don’t correct them for something they have every right to decide for themselves.

Activist spaces should realise that everyone has a right to think and feel whatever they do, and that as long as they are not actively harming anyone ( and choosing to disengage is not harmful behaviour) they should be free to do so. 

Not everyone can be everyone’s friend, and that is OK.