I’m supposed to get a massage at 1:00 pm today. I’ve been looking forward to it for days. It’s one of the only things that eases my Atypical Trigeminal Neuralgia pain which seems to originate in my neck from Degenerative Disc Disease, or so my pain specialist believes.
I had to miss work yesterday and don’t feel any better today.
I woke up to a stabbing, tearing, ripping pain in my lower left quadrant. It feels like my ovary is stuck to my lower intestine and my GI doctor said it probably is, from either Endometriosis or scar tissue and adhesions. Now I’m dealing with the gastrointestinal consequences and it sucks.
The fatigue takes my breath away. When they say that Endo can cause fatigue as severe as that experienced by those with end-stage cancer, they are not kidding. It is real. I can barely move. I have no idea how I’m going to take a shower, shave, and get ready for this massage.
I ran across this cute little giraffe at Aldi today and wanted to share my new friend with everyone. He is a warming buddy that you heat up in the microwave and use in place of a heating pad.
I know my Endo Sisters can relate to having the extra appendage of a heating pad. I also use heat and/or ice during facial pain flare-ups. I rarely leave home without a heating pad or ice pack. I use them every day and carry them back and forth between work and home.
I thought this little cutie might bring a smile to my face when I’m struggling with pain and battling the inevitable flare-ups.
I probably wouldn’t have splurged by spending $9.99 for myself but since my Mom was with me and will do anything to make me smile, I got to bring him home.
I look forward to trying him out soon.
I must once again apologize for my random absences, missed weakly features, and sporadic posts. Since our main topic is chronic illness and pain, I am confident that our followers can relate to and sympathize with my recent occasional bouts of being bedridden, feeling incapacitated, sick, in pain, and unable to post as frequently as I would like or had planned.
My editorial calendar is filled with interesting, educational, and helpful topics which would better appeal to the masses but my rather unexpected and new health issues which have developed over the past few weeks have taken center stage and caused my blog to take on more of a diary format for the moment. I am going with it for now, as I find it helpful and supportive to share our individual journey, as well as other topics along the way. Some periods of time may lean in one direction more than the other but our goal remains the same.
During my last update about my current GI journey, I believe I shared and explained some complications or side effects that I experienced for several days following my recent ERCP and pancreatic bile duct stent placement.
My gastroenterologist, despite him being highly skilled and me being forever indebted to him for most likely saving my life, seemed to be lacking in the area of follow-up care after the ERCP procedure. I was never given a follow-up appointment and did not know exactly what would be found or done during the procedure, which obviously will have an effect on a patient’s recovery. The issue of follow-up care has since improved but at the point in my journey which I’m describing here, that is very much how I felt.
I believe I spoke with both my doctor and another GI specialist (the latter two, three, or more times) after I woke up but we all know how the side-effects of heavy sedation or anesthesia can affect eliminate your memory. I have no recollection of speaking with my doctor and only remember two out of the three (or maybe four) times that I spoke with the GI doctor on-call at the hospital.
I have felt it on the horizon for days now and, without invitation, it’s here. The excruciating Endometriosis flare-up that is becoming more and more frequent and is the one thing that I can count on to stop me in my tracks and bring my life to a stand-still for a 3 to 5 day stretch every 4 to 6 weeks.
Don’t get me wrong, the Endo monster is very much present on a daily basis, in one way or another. However, flare-ups like this are a very different level of agony.
I am celebrating a small victory in the timing of this one, because it just so happened to start yesterday, which was Friday, at about 3:00 pm so it didn’t cause me to miss any work (yet).
At this point, I have made it 5 consecutive weeks without calling in sick. That may not seem like much to a normal, healthy person but to those who work each day with severe chronic pain, debilitating fatigue, and a plethora of other unpleasant symptoms, making it through 5 weeks of work actually IS an accomplishment.
Well, so far, this week’s score is 2:1 and Endometriosis is in the lead.
Yesterday I had the worst flare-up that I have had in years. I woke up in horrible pain, so I sent an e-mail to work letting them know that I would be a couple of hours late.
I took my meds, sat on the couch, drinking coffee and smoking cigarettes, waiting for the meds to kick in. As far as I could tell, they never did.
The pain continued to get worse, so I sent another e-mail telling my co-workers what was going on and that I would try to work the 2nd half of the day. This was very troubling to me, as my boss likes to take spur of the moment road trips and had hit the road the day before so I knew that he would not be in the office. For that reason, I had planned on going to work no matter what, but this situation was out of my control. I could hardly walk or even move without moaning in pain, let alone drive and function at my workplace.
Luckily I had my laptop with me and let everyone know that I could perform any essential functions from home, if anything urgent came up.
Within the hour things got even worse. Continue reading
Sometimes God works in mysterious ways. Over the weekend, my parents delivered an entire week (or more) worth of food; prepared, cooked, and ready to heat and eat.
Here is a photo of our feast, which includes chicken, meatloaf, vegetable soup, lasagna, breadsticks, beef noodle casserole, beans, organic salad, and more. YUM! Needless to say, I have been eating a lot more than usual this week, trying to replenish some of the nutrients that my usual poor eating eating habits have robbed me of.
As I have mentioned before, I often follow an anti-inflammatory meat, dairy, and gluten free diet. However, this week I will be treating myself to what whatever I want to eat. Honestly, I haven’t been sticking to my diet in quite a while. I think it’s OK to stray from the diet sometimes and if someone else is preparing a meal or we are eating out at a restaurant, I typically indulge on whatever I like.
I think my parents worry about Billy and I not eating enough, which is a reasonable worry considering the fact that I’ve lost 35 pounds since my chronic pain became constant.
They also know that both Billy and I battle with such severe pain and fatigue that, during an acute flare-up, simple tasks like cooking can quickly become impossible. Continue reading
If someone asked me what my greatest challenge was, with regard to living with an invisible illness and chronic pain, I wouldn’t even have to think twice before I answered “working.” The reasons are likely obvious to anyone who has a chronic illness and/or lives with chronic pain and those reasons are MANY.
We never know how we are going to feel from one minute to the next, let alone one day to the next. For me, something ALWAYS hurts. Not just a little annoying pain, but severe, debilitating pain. Luckily my brain seems to process primarily one pathway of pain signals at a time. This means that the most severe source of pain is what I feel at any given moment. Sometimes that is facial pain due to Atypical Trigeminal Neuralgia or Atypical Facial Pain (the doctors keep switching back and forth between these diagnoses) and TMJ/TMD, which feels like someone has placed a needle into my upper right teeth without ever taking it out. That pain radiates into my cheek, temple, head, and neck. Sometimes it starts in my neck and radiates outward from there. My other source of chronic, invisible pain is in the abdominal region due to Endometriosis, PCOS, Endosalpingiosis, and abdominal adhesions. I usually just refer to it all as “Endo” for the sake of simplicity. This is often the most debilitating pain of all because it is peritoneal quality pain, which has a tendency to affect a large portion of the body (stomach, abdomen, pelvis, lower back, and upper legs/thighs). Sometimes it is only a dull ache (my facial pain is usually more severe during those times), but other times it causes severe stabbing, cramping, ripping, crushing, and tearing pain which can bring me to my knees, cause nausea, severe GI symptoms, make it hard to breathe, and even cause me to pass out. Many compare Endo flare-ups to acute appendicitis or even labor contractions. It leaves the body in a constant state of inflammation and causes my abdomen to swell to the point of looking pregnant at times. All of this also causes a debilitating fatigue, which research has shown often reaches a level experienced by those with end-stage cancer. When that happens, it feels like my arms, legs, and other body parts are carrying around 100 pound weights (which is more than my total body weight). These are just some of the physical symptoms. The psychological and emotional symptoms are another monster all their own. Imagine trying to concentrate on work, completing complex or even mundane daily tasks, dealing with co-workers, attending meetings, managing stress, and meeting deadlines while feeling this way. Sound tough? It is. This is the best way that I know how to describe it but even these words don’t do it justice. Continue reading
I know the title of this blog post may seem strange. There is really no connection between the two words except that they are both present and on my mind.
Today is our 6th wedding anniversary. Billy and I have been together for 11 years now and our love is strong. We have been through challenges that would be hard to imagine and many that no one knows about except for us. Things that would test and destroy the most solid relationship but somehow our love has always pulled us through and prevailed. I am so thankful for my husband and the unconditional love that we share.
This should be a joyous day but I cried all the way to work. Yesterday and the day before, I cried all the way home. Last night I sat and cried on the couch but I don’t think Billy noticed. He has his own overwhelming struggles to deal with and I tried not to make it obvious. Throughout my years of participation in online chronic pain, Trigeminal Neuralgia/Facial Pain, Endometriosis, and PCOS support groups, I have read and been acclimated to the very real link between chronic pain and depression. I knew it could happen and the likelihood that it would is very high. I have watched my husband struggle with it for years, even before the wreck and his botched surgery, but so much more afterwards. It has been ripping him apart for what seems like forever and it appears to finally be taking hold of me. Continue reading
A little over a week ago, I made the decision to take a break from social media. Yes, I am now officially on hiatus from Facebook and Twitter. I may share my blog posts there but for now, I am sticking with my decision not to log on, check messages, etc. until further notice. Any comments on my blog posts will not be visible to me unless they are posted directly through WordPress.
A break from social media may sound like no big deal to some people but for me it has been huge. Since chronic pain moved in (uninvited) and decided to take up residence in my life, my contact with the outside world has diminished. I have never been a social creature, so that consequence of chronic pain isn’t all that devastating for me. However, when my life started to change, I found myself turning to social media for support, social interaction, education, and raising awareness for Endometriosis, chronic pain, and a few issues that go along with it. That part has been great and I have met some wonderful people along the way. Continue reading