Sick of It

Sick of It

I was supposed to be normal today (well, now yesterday, I suppose…) I was supposed to go to the Skillet concert with David and my endo sister April and her daughter. We had box seats and everything. Sort of an early birthday present. I love Skillet and I’ve never had the chance to see them live. And I was going to write an awesome blog post about how much fun I had and how great it was to do a normal activity for a change.

But do I wake up feeling well? Nooooo, of course not. My head was pounding (and going to a rock concert wouldn’t be the best cure for that.) My head felt like it was detached from my body. And the room was a little spinny. So I had to bail. But at least the three of them got to go and they had a great time (thanks April for the picture above!) And seeing my friends and family enjoy themselves gives me joy.

But I’m sick of it. (Ba-dum-tuss if you’re a Skillet fan…) No, I’m not sick of the joy part! I’m just ready to lead a normal life again. My surgeries are over. I should be feeling better. But I don’t. I’ve been starting to feel worse over the past two weeks. And I’m not happy about it.

See, this is what chronic illness is all about. You’re fixed, but you’re not. You’re simply managed. It’s chronic.

I had my endometriosis excised two years ago and haven’t had a problem with the endo itself since (because Dr. Sinervo rocks my world) but still needed another pelvic surgery due to something that possibly happened as a result of the excision surgery. Yet I still have daily chronic pelvic pain, because that’s sometimes what happens with endometriosis, even if there is no disease present (which I know there isn’t; my surgery in July confirmed that.)

It’s now been a month since my brain surgery. Yes, yes, I know, I’m still healing. It was a benign tumor, but not a benign surgery by any means. Healing from this will take a long time. The pituitary gland is the body’s “master gland” and some of it was lopped off during my surgery to make sure the whole tumor was removed, so it’s going to take awhile for it to resume normal functioning again. Hence the reason I feel like trash all the time; why I’m sleeping 12-16 hours a day and why my head hurts and why I’m so fatigued I can barely leave my bedroom and why I’ve started to have dizzy spells again. Hopefully my blood tests will indicate if I need to start taking hydrocortisone or increase my Synthroid dose due to damage to the gland that it can’t compensate for on its own.

But if that’s the case, these changes and new medications may be for life. The tumor is gone, but the effects of the removal may always remain. Everything comes with a price.

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I have to go back to work in two weeks. And I’m terrified. My third week back I’m working nine days in a row just to get Thanksgiving off. (Because it would be nice to, I don’t know, spend the holiday with my family for the first time since we got married six years ago?) Working that much is going to kill me. I’ll probably spend the whole holiday on the couch at my parent’s house. But work is hell, especially this time of year. It’s respiratory season, flu season can hit any time, and we have tons of kids come through with pneumonia and other icky things that need IV antibiotics and oxygen.

I honestly don’t think I’ll be ready. But there’s nothing I can do about that. Absolutely nothing.

I just want the old me back. The more durable version instead of this beaten up one.

I’ll just console myself with these awesome lyrics from my newest favorite Skillet song, Stars ✨ (which of course they played and I missed it!)

If you can hold the stars in place
You can hold my heart the same
Whenever I fall away
Whenever I start to break
So here I am, lifting up my heart
If you can calm the raging sea
You can calm the storm in me
You’re never too far away
You never show up too late
So here I am, lifting up my heart
To the one who holds the stars…

?ribbonrx

0 thoughts on “Sick of It

  1. I can relate, unfortunately. I have wanted to see Rob Zombie for years & everything I have a chance, something always cones up and I cannot make it. Its exhausting trying to keep up sorry life when you are always being “pushed back” over and over again. Then to top it off, constantly being let down because of an illness that is not seen but felt all the time. Where is the justice between the lives we want and the one we are living? One day, we will each make it to our concerts, if only out of shear determination!

  2. Hello Laura. I
    My name is Robin Zander and I am your father in law’s first cousin. So that makes me David’s second cousin. I’ve been reading your blog since you began. I have included you in my prayer circle. It saddens me that this circle just keeps getting bigger as more of us cope with chronic illness.
    I have SLE. I was diagnoses with Lupus in 1991 however I knew I had it much earlier than that. I’m a nurse but do you think I could convince my doctors I did without a positive ANA. No. It took a year before I presented with a positive ANA.
    I literally dragged myself to work when the fatigue was overwhelming. I saw a psychiatrist who on occasion ran interference for me with the head of the dialysis unit at the hospital. It was often that I prayed hourly to get me through my shift. Just let everyone get off that machine and leave to get home to their lives again. I would go home and crash until I had to get up and do it again.
    I have a high tolerance for pain and because of this when I had appendicitis I thought I had the flu and the appendix ruptured. The petitioners was so severe the surgeon actually left most of the appendix in me so I faced a year of recurring petitioners and an open appendix where the intestinal contents just leaked into my abdomen. I had numerous admits. 11 CT Scans, and everyone thought I was crazy. Since the chief of surgery did the “appendectomy” not one doctor would give me a second opinion. Finally a surgeon who was actually dying of thyroid cancer called me and saw me. Then he started over with a gastroenterologist and they ordered a UGI with small bowel follow through. There on floroscope they saw the barium flowing into my abdomen. The funny thing was that behind my the chief of surgery had silently entered the Room, saw this and silently left the room. He wore this ghastly after shave so we all knew it was him.
    I had a Hemicolectomy 1 year and 6 days after the original surgery. By then I had numerous admits including cholecystectomy. I received a phone call in my hospital room to tell me I had lost my nursing position in the dialysis unit. Talk about depression. I had sunk into the black hole.
    I did an about change and went into the nursing staff at MetLife. I switched to transplant case management and loved it. After 3 years I was recruited for a job at a small insurance company called Oxford Health Plans. It felt good to be wanted. I worked for them for 6 years while I was mostly in remission. Then SLE reared it’s ugly head and I finally was included in a large layoff. That devastated me.
    Chronic illness is truly not understood by people until they themselves have it. I agree with you about the chronically ill patient and the prescribing of pain meds.
    I was cleaning out 3 storage units my sister left here before she moved to Florida. I started having severe groin pain. I was taking Alleve and I was up to 36 per day. The Orthopedist I saw did films- nothing showed. He ordered PT. I saw my PVP because I feared Kidney or Liver failure. My creatinine was 1.5. She gave me 14 Tyelenol#3. I went to the Physiatrist the ortho guy sent me to. He ordered an MRI. I asked him for premeds because I don’t do well in small spaces and he said I would be fine. Of course I freaked out and there was no MRI. These doctors were in Norwalk where Doug’s mother grew up. I live in Stamford Two towns away from Norwalk. By now the pain was so severe I could barely walk. I had used a wheelchair at the hospital. Two days after the MRI fiasco I was standing in my hallway and the neck of the femur fractured completely. I had to crawl to bedroom to reach a phone and call 911. That whole deal was an entirely comical experience. Anyway I was taken to Stamford Hospital where I knew no one and had the best medical experience of my life. I went to a SNF for PT then home and developed cellulitis that gave me 5 weeks of antibiotics. I go to PT twice a week but I am constantly in pain at the incision site. I have a 10.5 inch incision and half of it feels like someone put a garden hose in there. Once again I request something for pain and get nothing. I can barely sit on this butt cheek. So I understand what you are going through. Did you ever see the movie The Doctor with William Hurt? That movie said it all for me. People in medicine are biased. Until they get sick they will judge you by the “norm”. Not as an individual unique case. You had your surgeries you had you normal post op recovery now you are SUPPOSED to be normal again. You had your routine 6 or 8 week recovery get out of that bed and get back to work and function at 100%. It just does not work that way and until the people who think that way become ill themselves we are misjudged. I think of you often I can really identify with the fear of heading back to work. For me the final result was going on Social Security Disability. I was approved without any hassle and that alone saved me Sure you live on a fixed income but you paid into that program and you need the system to work for you. I miss nursing but this solution was the best for me. You do not know me but I feel like I know you. Please know you are definitely in my prayers. I hope you feel better
    Fondly,
    Your cousin Robin

    1. Hi Robin,
      Thank you so much for sharing your story with me! It’s always great to know you’re not alone when it comes to things like this; plus you have the experience of working in healthcare too! You have been through so much! It really means a lot to me to be able to identify with you, even though we have never met. Hopefully we can meet someday! Thank you for reading my blog, and I hope you continue to enjoy it. David and I will keep you in our prayers and I hope you will be feeling at least a little better soon!?
      Your cousin, Laura

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