When Life Gets in the way of chronic Illness

You’ll have to forgive me, as this is going to be a mash up of topics post. I’m so tired, my eyeballs feel like they’re bleeding.

I have had so much to tell you about! And then my Son was very seriously injured at work.

I cannot say when or if I will be able to Blog during this time. It’s been a delicate balancing act and at the end of the day, there’s just nothing left.

To tie up some other things in my blogging world, surgery has been canceled. After numerous meetings with my team of Doctors and a rather arduous decision process, it has been decided that surgery could be pretty risky for my fragile body. Instead, we will be doing every three month MRIs to monitor the mass on my ovary. It’s a little scary to think it could still be cancer, I’m not going to lie. But all of my Doctors agreed that three month MRIs would catch the mass growing and if it comes to that, we will proceed with surgery. This has been a really great lesson in self-advocacy, because as soon as I brought up all my concerns of having surgery, the Doctors quickly agreed they were valid and that we could carefully monitor what was happening with MRIs, instead. Good thing, too. My new surgery date was five days before my Son fell. I shudder the thought of my being completely down when he needed me and how impossible it would have been to properly advocate for him.

I did a quick post about deciding to try Gabapentin for my Neuropathy. At times, I really fear I will lose my grip on my sanity with the level of pain I experience. Well, turns out the pain is nothing compared to the Gabapentin. I was started out on 100 mg, once a day. The normal starting dose is 300mg, three times a day. Knowing my sensitivities to medicine, my Primary Care and I decided to be super cautious. And thank God we were. Despite such a low dose, I had severe psychological side effects from it. I immediately became agitated and irritable, but I didn’t quite notice, other than to say why am I so crabby? By day six, I knew something was very wrong. I was feeling agitated, irritable, aggressive and extremely angry. Come day 7 (still only 100mg once a day), sudden depression began to kick in and I went from being ready to strangle the closest person to then sobbing over how awful I was. Thankfully (am I really saying thankfully in this context???) I have experienced these same side effects after not being properly tapered off of Prednisone and I stopped taking Gabapentin. The real kicker is, it was working. I had finally been able to sit and sleep comfortably. But no amount of comfort is worth the horrendous psychological effects I experienced. Even knowing what it was, it was once again a terrifying experience and one I can do without. The strangest part of it is, even though I knew it was a medication side effect, the profound depression and aggression were my reality. I couldn’t outthink it or reason through “it’s just the medicine”……..The change in the brain chemistry is far too powerful. It makes me sick to think of people less familiar with this medication rodeo that may not recognize that these changes are medication derived. Sigh…….

I wanted to quickly mention an issue I had with a Reader, in the midst of all of this insanity. A new Reader left some really awesome comments on a Blog Post of mine and with all that was going on, I didn’t get to respond to them in a timely fashion. I inadvertently offended her and hurt her feelings. Thankfully, she emailed me and I was able to explain my delay, but I wanted to reach out to all of you and say that your readership and your comments are very important to me. I always read what you say, but because I struggle physically, as well as with Fibro Fog, I don’t respond to comments until I feel I can give them the attention and response they deserve (nevermind I need to be able to be coherent). When any of you comment, I know how much that takes……we typically feel crummy; both mentally and physically. Some of you need to work up the courage to post comments on a public page. Oftentimes what you all comment on is private and personal. I want you all to know that you are important to me and you are the only reason I write this Blog. What you say is important and has value. If I do not respond to your comments in a timely manner, please know that it is due to my health or in this case, due to the severe injury of my Son. But I will always get back to you and I will always try to make you feel heard.

I wanted to end on a very positive and extremely grateful note. I have been nominated, by you, for two WEGO Health Awards and I couldn’t be any more humbled or honored.

The biggest thing about this is not the opportunity to win the actual award or prize money; although that would be really great. The biggest thing to me about this huge honor is that I have accomplished my ultimate goal: I helped someone. At the encouragement of a beloved (now passed on) friend, I began writing this Blog because I had to make getting sick be about something more than just that. I couldn’t let getting sick be only about getting sick; I needed it to be worth something and have a greater purpose than just stealing my life. So I decided to use this experience to help other people suffering. Because truthfully, it immensely sucks, as we all know. To whomever nominated me, thank you. I am tremendously grateful. July is voting month and I would be grateful if you would vote for FightingWithFibro.com

You can find my profile and voting option here: https://www.wegohealth.com/48159362/awards

I have been nominated for Best Kept Secret and Advocating for Another.

For now, I cannot say when or if I will be blogging. I may try to just do quick posts, to say hi……but truthfully, writing a post typically takes me hours and I’m just not sure I’ll have the time or bandwidth to do that just now. In the coming days and weeks, I will be putting all of my advocacy into the care and recovery of my Son and doing what we all do: fighting.

I miss you all and ask for your thoughts and prayers. And votes! LOL.

Much Love, Stace

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Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

12 thoughts on “When Life Gets in the way of chronic Illness

  1. Stacey,
    I am so sorry you are going through all of this and that Colton was injured so severely. Will be praying for his healing and recovery and also that your ovarian mass does not grow! Hang in there and know that your readers all support you!

    1. Thank you so very much, Gail. It’s one thing when I suffer, it’s another thing, entirely, when my Son is. Thank you for the prayers, they’re all that’s keeping my going. xoxo ❤️

  2. Oh my goodness, poor Colton. What a horrible thing to have happen, that must have been terrifying. It’s hard to say ‘it could have been worse’ because what’s happened is bloody well bad enough. A bad time for anything health-wise to happen with the virus and so many services reduced, and it seems you’ve found. They can’t leave him like that for over a week without seeing the surgeon, surely. The comp I’m not surprised about; insurance and claims get such a bad rep for not helping clients and customers, those that need the help and money the most. Dirty and underhand slime balls. It’ll be a tough ride to get it but I know you’re a fighter, Stace, and you and Colton will do all you can to get there with the hospitals and the comp.

    That sense of humour will see him through too. And no, I hadn’t realised Oxytocin’s plus morphine could equal continual hiccups, how odd!

    Isn’t it strange how things work out though? Your surgery would have been just before Colton’s injury, and both of you would have needed support neither of you would be able to help the other out. And you would have desperately wanted to help your son but probably wouldn’t have been up to it, or actually able to.

    I’m sorry you had a bad time with the Gabapentin. I went on Amitriptyline recently and the pains in my lower legs vanished, it was incredible and blissful just to have that little bit of respite. But the side-effects weren’t worth it and I was waking up hours late each morning feeling drugged out of my mind. One day, there will be a medication that doesn’t cause another problem or two of its own!

    I commented on your Facebook earlier to say I’ve been able to endorse you on Wego now, hurrah! It’s so exciting that we’ve both been nominated, we’ll be Wego sisters. I’m keeping my fingers crossed for you!

    You, and your family, have had a terrible time of things go rather haywire, but I have to believe that things will work out, and that there will be better days. Hang in there, and I’ll be sending lots of positive thoughts Colton’s way and hoping that he gets the care and surgery he needs asap.

    Sending love,
    Caz xxxxxxx

    1. Thank you SO much for the positive thoughts ❤️ I need them. I am SO excited to be your WEGO Sister! EEK! I LOVE that. 🤣 I will be certain to vote for you by the end of the month! Your nomination is so beyond well deserved! Your Blog and shining personality help so many people!
      xoxo Stace

  3. Oh Facebook?? Who knew?
    Okay Stacey, the comp thing. I’m not sure if I ever wrote you my story, but I was diagnosed with fibro BECAUSE of my comp claim! Go straight to his employer and let them know you are not getting a good response. They should be helping him navigate the comp arena. I have the background of being in the medical profession and also having a brother who has an Occupational Medicine practice. I did billing for 8 years and as a transcriptionist, I knew the need for documentation for comp carriers from medical records. There is NO REASON he should not have seen an orthopedic surgeon, they should have called one into the ER. Are there a shortage of doctors in your area? Completely unacceptable! Did the employer give you the required information and paperwork on their end? He should have a claims person assigned to him. OMGoodness this just gets me so upset!

    Okay the gabapentin. I am so sorry. I take 150 in the morning and 300 in the evening along with amitriptyline 30 mg in the evening to help me sleep. I just finished a 24 hour drug holiday and woke up this morning with everywhere hurting…..ugh. I immediately took a pain pill with my coffee and look forward to a normal day instead of yesterday when I would do something for a few minutes and run back to my recliner and heating pad. I am a type A so I chose July 4th because my husband left very early in the morning to drive 3 hours to drop off the food for his best friend’s daughter’s wedding. We were supposed to attend, but COVID…..went to just immediate family only, but of course my husband still made the food for the 20 people. We also own a car wash in the town that he recently took over management so he was going to go ahead and spend the night to get some work done there. It is my youngest daughter’s wedding anniversary, but they could not find an open restaurant for dinner, so I did not get to watch the granddaughters. I thought perfect, I would be alone and would not bite everyone’s heads off!

    I just feel terrible for you that you can’t take gabapentin and this is the same exact reaction my very sensitive sister has with it. She was misdiagnosed with rheumatoid arthritis for 5 YEARS!!! Unfortunately she is a mess and the only thing that really helps is prednisone and Vicodin (which gives her a migraine). You don’t ever have to explain to me the nonresponse. I get it! Take care and call the employer first thing Monday morning to have them advocate for your son. Also a worker’s comp lawyer doesn’t hurt either. It was the attorney I consulted after I was offered a settlement that informed me the California laws changed so that if you have an underlying disease too bad so sad about a settlement. I had a frozen shoulder that when unfroze seemed to bring on the widespread pain. So my settlement was less than $5000 for an injury that basically changed my entire working life. I could no longer do medical transcription, which I had one for 32 years, was really good at and loved it!

    Take care of you and your son. God Bless.

    1. Thank you for the very helpful suggestions, Cheryl! I truly appreciate them. A nightmare doesn’t even come close to describing this situation. I would truly appreciate your ongoing prayers and thank you for your well wishes xoxo ❤️ Stace

  4. I’m so so sorry to hear about your son’s terrible accident and your cancelled surgery. At least the WEGO Health Awards are a bright spot in all this bad news and it sounds like your don makes a great patient, at least. I will be thinking of you all and hoping for quick resolutions and the best outcomes possible. Xx

    1. Thanks Michelle! I would appreciate all the thoughts and positive energy I can get. I really need it. I’m SO excited for you and your nomination!

  5. Wow, I had never heard of that type of reaction to Gabapentin, especially on such a low dose! That must have been scary. I was prescribed Gabapentin over a year ago. I made it up to 300 mg of Gabapentin, but I also started to experience some depression. I’m not entirely sure it was the cause, but the timing made sense. I continued it for many months, but it didn’t really do much for my pain, and due to the fatigue it caused I couldn’t increase the dose. I ended up stopping it earlier this year.

    I’m very sorry about your son. I hope he is okay.

    1. Ugh. Right? They never warn you what the meds can do-even if it’s only a slim chance.
      At one point I was on Topomax, which worked for the migraines, but I was having episodes of peeing blood. I went through the ringer, multiple Specialists and told it was likely bladder cancer. When they said exploratory surgery, I started to dig further….sure enough, peeing blood was a little known side effect of Topomax. I stopped the med, it all stopped 🙄
      Ever since, I’ve been a crazy person with knowing and understanding all the drugs can do. And somehow, inevitably, all the “slim chance” side effects are the ones I experience. My Therapist said she knew Gaba could do that, but hadn’t had anyone else affected that way. Looks like now I have you!!
      Another med crossed off my list. Except it worked!!!! Grrrrr. At least for the Neuropathy.
      Overall, besides the pain meds and the migraine abort med, most drugs don’t do anything for me-except give me side effects. It seems to be that way for most of us, unfortunately.
      I’m sorry it didn’t work out for you though. We never get many options for help 😞

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