If you have been following my posts, you know that I took a month off of ALL meds. All of my tests are now back and none of them are good. (enter sad face here) My pain like I said last week has doubled, sometimes tripled. I guess in this case, the Dr was right when she said, “Stop meds and the disease will take over.”
So as you can imagine, this past week has been one I wish to forget but just in case you were curious, i will give you a readers digest version..
Thursday,July 13th I made an appt with a massage therapist named Kristin. She was amazing and for the first time in 2 weeks, I slept the entire night. However by morning, I was throwing up and this went on all day. The massage therapist said that because I was back on higher doses of chemo meds, my body was unable to fight all the toxins that the massage put into my blood stream. Why does NOTHING seem to go right?!
Saturday I was able to hold some food down but was still in a lot of pain. Sunday I went to work but by the time I left I was in so much pain, it felt like I could not breathe. At 10 pm I went into the hospital and did not get out till the next day. As you can see I was very thrilled to be at the hospital.
I was grateful however as the Dr on call did try and help me, as best as she could. A few hours after these pictures, i decided to go to work as I could not lay in a bed any longer. Besides two of my old coworkers stopped by to say HI. I look cute for being in the hospital all night. 😉 Make Up does wonders! Ha!
Tuesday was a complete blur, i slept most of the day. Wednesday I had two Dr appts. One of the Dr’s was great. He refilled my Permanent Spine pump and upped the dose in hopes that it helps with my pain. The other Dr just irritated me by telling me that my new Chemo/biologic dose was going to be higher than last week. I get so tired of all of this shit. It is so easy for the Dr’s to tell me these types of things when they are NOT the ones who have to take it.
Thursday night I did the higher dose of chemo meds and within an hour i was feeling like crap. Friday and Saturday were awful, I did not even want to crawl out of bed. The pain was ridiculous, just the sight of food made my belly sick and of course the internal bleeding started back up. I absolutely hate days like this because NOTHING you do is right. You just have to push through it all and hope you make it to the next hour and so on.
So that is how my last week went. Today I keep reminding myself that it is a new day and that I have to keep pushing forward. This past week has been extremely rough and there was times when I thought I could not go on. It really sucked that when I reached out to several people to help me at the hospital then got a million and one excuses the next day of why only a few got back to me. Look I know people have lives however the only people I reached out to were the ones who said, “Kari, reach out if you need anything.” So IF YOU DO NOT MEAN WHAT YOU SAY…PLEASE DO NOT SAY IT. My health is no joke and when I reach out, i really need YOU. I have no family here and sometimes I need more than Brian to help. Many of you may not understand what it is like to be so sick that you have to take all these horrible meds, be in 24/7 pain, see your Dr’s more than your friends and then watch everything that you have ever imagined your life to be disappear before your eyes, but I am here to tell you it sucks. With that said, I would like to answer some emails I recently received…..
1. How do you “push” through when all you want to do is give up? Am I normal to think of Suicide?
Good question! Truth is I scream a LOT. I Pray, I pray God to hold my hand and walk me through it. Sometimes I get in my car and I just drive. I drive until my mind stops focusing on the pain. I walk till my legs say no more. I just find something else to do and If it is a day where I can’t move at all, then I lay there and I scream, and I pray and I see it through. Some of the emails i get in regards to this subject talk about wanting to commit suicide. I completely understand why you would want too, i know it hurts, i know what you have lost while your body has turned against you, i know people have left you, i know, I am here with you. I am going through the same things, and you are not alone. I believe thinking about suicide is normal but I do not think that we really want is to die, i think we just want all the effects of chronic/terminal disease to end, the pain, the misery, the heartache, the loneliness etc. I think when we are diagnosed with chronic/terminal illness the Dr’s should be more proactive as far as making a plan for each of us. What i mean by plan is, after being diagnosed, there should be a “team” for lack of a better word, that is put into play. A team that is made for each of us as an individual.
In the Midst of Chester Bennington’s and the 3 Spoonies from my support group who committed suicide, I would like to take a moment and discuss Suicide and how I see it. The word suicide should not be one we fear. We should be able to talk about Suicide with our Doctors with out repercussions. I hear more often than not how chronic illness people are afraid to talk about how they feel because they are afraid of being scrutinized and labeled. I think this is something that we need to keep talking about. It is a very important subject that many of us are silent about. I once read that,” Suicide is not chosen; it happens when pain exceeds resources coping with pain.” I really love this quote and i find it very fitting for many of us dealing with chronic pain/illness/PTSD. I AM almost always available if anyone wants to talk or you can call the Suicide Hotline at 1-800-273-8255. Suicide IS real, and should be talked about, please do not Suffer in Silence.
2. Do you feel like a burden to those who love you?
The only good answer to this question is YES. How can any of us who are battling some type of disease not feel like a burden to those around us? It is very natural to feel this way. Sometimes I can barely walk to the bathroom, or walk down the hallway and i have to ask for help. I used to love going to the movies, or go out to eat, like sit and eat but no longer enjoy these things because I am either in to much pain or so fatigued that I just can’t spare the energy. This is WHY i always tell people when they come into my life just how sick I am because they need to know that it is a full time job just taking care of me sometimes. This is also the very reason many people who are sick are left by those who promise to love them. I am NOT just the girl people see at work or at HOG meetings etc……and you are NOT just the person you are when out and about. At one point in time, we all wear a mask. All of us must choose wisely who we allow onto our path……
On a side note, I just want to say thanks to my cat who passed away last July…..Haussen you were my best friend. You never used my health against me in fact you loved me through it. I love you everyday and you will be forever missed…….
As always thank you all for your continued support. I am so grateful to each and everyone of you. Remember to treat each other with kindness and know that EVERYONE is battling demons of some kind. Have a good rest of the week…..XOXO