Conditionally Speaking…

Welcome back!

I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it. I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing. Of course, I have weird fingers anyway…which leads to another thing on my list.

Brachydactyly.  Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E.  It’s described as such, from Wikipedia:

Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenital syndromes.
Brachydactyly.svg
I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either.  You can see the flatness in the photo beside my hand.
PamFingers2  PamKnuckles
People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:
PamToes1
I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time.  The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.

Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):

Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked Dr Leong if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try and exercise a bit more.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! Dr Leong put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

The other few things on the list are all fairly minor. I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.

So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice to say that you have to be mighty strong to live like this, to get through the day to day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.

Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…

There is always hope!

🎶 I've Got The Lady Garden Blues 🎶

WARNING – INTIMATE DETAILS/PICTURES TO FOLLOW
I talk a lot about my health issues on this blog because that’s a huge part of my life….the various health issues I live with. I thought up until recently that things were going pretty well – my hip was recovering well from the replacement surgery, and even though I’d developed some issues with the Achilles tendon on my left ankle/foot, and my knee was still being a bitch on the right side, overall, things weren’t getting worse with my body. So when I found the mole in the Lady Garden, there was that instant sensation of “oh crap…this isn’t good”….and I was right.
Readers, before I go any further, I want to warn you that I’m going to be talking about intimate parts of my body. I will use euphemisms as well as proper body terms, and I am going to be laying things on the line. If this makes you squeamish, then STOP NOW. Go on over to Jenny Lawson’s blog and have a few laughs instead. None of this is easy for me, but I think it’s important to share this and to be honest, because if it happened to me, it could happen to anyone and I’m a firm believer in education when possible. Okay? Good. Let’s get started.
Now, I know every lady has their own preference for how they like to maintain “the Lady Garden”. I prefer to keep mine trimmed fairly short, but it generally grows quite long before I do anything. Then I have to trim with scissors before using a beard shaver to get it to the length I like. Ray doesn’t care one way or the other and in fact, probably prefers it longer than I do. I just can’t stand an overgrown jungle. It gets caught in my panties, it pinches and pulls and I worry about freshness and smelling good. So, I trim fairly short. Right before I had my hip replacement done, I did an extremely short cut because I knew I wasn’t going to be able to physically manage to do it again for a few months. When I finally WAS able to trim again, I was certain a parade of jungle animals would come sauntering out, the bush was so thick!!!!
It was early July when I set forth on this task and after using the beard shaver to get things to a more manageable level, I noticed THE MOLE (dun dun DUN!!!) for the first time. It hadn’t been there in February, so in only 5 months, it had developed and grown to a size slightly larger than a pencil eraser. It was pebbly on the top and when I scratched at it, not realizing it was a mole at first, it started to bleed along the edge. My heart jumped into my throat and my hands started shaking. This was NO place for a mole, and I am covered with them….moles, beauty spots, brownie kisses, whatever you want to call them. I’ve had several removed over the years, from my neck and my arms, and one lump from my face that turned out to be nothing of concern, but looking at THE MOLE, I knew immediately it was something to worry about, if only because of the location and it’s quick appearance.
Mole2
I phoned my family doctor immediately to make an appointment and on July 10th, I saw Dr. Leong. When he came into the examining room, we shook hands as always, and then I said to him, “okay, this is how things are going to go. I have a mole. You’re going to look at THE MOLE, tell me I’m an idiot for worrying and send me home”. I could feel my voice quiver and I saw his look of concern. He knows that I know my body well, and if I was worried, then there was definitely a reason to worry. He looked carefully at THE MOLE, using bright light, touching it and moving it and saw it start to bleed a bit. I could see the expression on his face change and when he was finished examining me and helped me sit up, he said to me “well, I can’t call you an idiot, but I don’t think it’s anything too serious. I’ll remove it and we’ll send it to pathology, but I don’t think you need to worry”.
Ah, the relief!!! I love Dr. Leong…he’s honest and straightforward and I know I can trust him. So we made a follow-up appointment to have THE MOLE removed and I left there a happy girl. Now let’s zip forward to July 27th – the day Dr. Leong removed THE MOLE. It was a super easy process…Ray came with me into the room. Dr. Leong froze the area around THE MOLE with local freezing, then did an incision about a half inch around THE MOLE, stitched me up with just a few stitches and we were done in about 20 minutes. I felt nothing and there was no pain afterward…it was perfect. He told me he’d call me with the results from Pathology but didn’t expect there to be a problem and sent me on my way.
And then I got the phone call a few days later, asking me to come into his office. It was too soon for the stitches to come out, and there was no way he was asking me to come in just to say everything was fine. Dr. Leong knows that I take the bus to get to his office and that it’s a 45-minute ride for me, so I knew the results meant there was a problem. When I arrived, the two gals at the front desk, whom I’m friendly with, where both SUPER friendly…like, way beyond normal, so that made me even more suspicious. And sure enough, when Dr. Leong came into the examination room, he handed me the Pathology report and the result was something called Vulvar Intraepithelial Neoplasia 3 – or VIN 3 – which is basically as close to cancer as you can get without it being cancer.
Dr. Leong told me he would have to refer me to a Gynocologist for further surgery because the pre-cancerous cells were still showing up on the edges of the removal that he had done. A bigger, wider removal would have to be done, to make sure that ALL the pre-cancerous cells were gone. I sat there for a moment, absolutely gobsmacked. Like, seriously? Do I not have enough crap going on in my life already? I just looked at him and shook my head and he patted me on the shoulder. He said “I know…it’s not what either of us was hoping for. Do you want me to write you a prescription for something for stress or do you think you’ll be okay?”  I told him I’d be fine, folded the pathology report into my purse and left the office, still trying to process everything.
Once I got home, I sent Ray a note giving him a brief overview, and then posted an update on Facebook, so that everyone who had been sending me love and support was up to date. A few days later, I received an appointment date of October 5th to meet the Gynecologist who would be doing the wide excision surgery, Dr. Sherri Hancock. In the meantime, I was busy with several Patient Voices Network engagements, including the speech I gave at the Information Governance Conference, which certainly helped to keep my mind occupied. I knew that otherwise, I’d be running to Dr. Google constantly, trying to find everything single thing I could about this condition, called Vulvar Intraepithelial Neoplasia 3. Finally, Oct. 5th came and I met with Dr. Hancock. She was very nice, easy to talk to and gave me a good overview of what the surgery would entail. 
Because of the size and type of incision that’s made and the area that this was located (right at the edge of the pubic area, approximately 1 inch from the clitoris), the surgery is done under either a general anesthetic or a spinal and sedation. I initially chose the spinal because it worked so well for my hip replacement, but when I met with the Anesthetist prior to surgery, we decided that a general was better because the surgery was only about 40 minutes long at the very most. She told me that I would most likely be given a surgery date in late October or early November and sure enough, I got the call that November 6th would be the day. I also received all the information on the dates for Pre-op appointments with Anesthesiology and to get Lab work done.
One lovely thing that happened in the middle of all this stress, and all the appointments, etc. is that Ray’s mom Lorna came to visit us for a few days! She stayed in Edmonton first to visit Ray’s sister Rhonda and her family – husband Tom, son James and daughter Paris. Then she came to Victoria to stay with us from October 12th to the 17th. I tried to conserve my energy as much as possible so we could spend as much time together as possible. We went to the Butchart Gardens which was lovely…Ray insisted I use my wheelchair so I wouldn’t exhaust myself and I have to admit, it really is the only way I can do the Gardens now. Unfortunately, at the very end of our time there, literally, as we were leaving, Lorna stumbled on the edge of one of the garden planters and fell almost face first, leaving her with a nasty nose bleed and quite a big bruise on her nose and under her eyes. It’s likely she broke her nose, but she didn’t want to have it checked. She had been suffering from a cold, so the nosebleed sure wasn’t helping!!  She’s a tough bird, I’ll tell you. There were people around her to help right away…we were ahead of her and didn’t see it happen, and the First Aid attendants from the Gardens were excellent (plus Ray is a trained First Responder). We spent about 30 minutes in the First Aid room there while her nose continued bleeding until she finally felt ready to leave. And then when we did leave, I had Ray drop ME off at the ER, as I’d been dealing with wrist pain all day, after scooping up a bowl of ice cream in the wee hours the night before. I heard a “pop” and felt a horrid pain shoot through my wrist, right where the knobby bone is (on the right wrist), and it was still a bit swollen and painful to the touch. I felt like an idiot when they were filling out the forms and I put down “scooping ice cream” as the reason for the injury. I was doing it on the patient side of the floor, not the waiting room side, so lots of people heard me and were laughing…me too. When I finally saw the Dr. there, he asked me “which ice cream place do you work at?”, thinking I did this for a living. I said, “no, no…this was just me at home”. And as soon as I said that, I could see him start to snicker. I couldn’t help but laugh again…it really was a stupid way to get hurt.
Anyway, he sent me to x-ray, and then another Dr. showed me the results – it came back fine, and this Dr. said it was probably just the ligament popping over the bone, which can really hurt but causes no harm. He sent me on my way and as I was leaving, the first Dr. leaned out into the hallway and said, loud enough for everyone to hear “take it easy on the ice cream Sweet Stuff”. Lots of people were laughing, because they all knew about the scooping…man oh man…I don’t embarrass easy, but I’m sure I had a red face!!!
So…Ray came and picked me up…I came home to rest and relax and that’s exactly what Lorna was doing too. She said her nose wasn’t hurting too much and that the bleeding had finally stopped, so that was good. It was such a shame to end the day like that but I’m glad it was at the end of the day, not the beginning!! The rest of her visit was quite quiet…she and I always have lots to talk about, so while Ray was at work, that’s what we did…we talked, we read, and in general, just enjoyed each other’s company. I love my mother-in-law so much and really miss her. She used to live closer to us, but now is in Ontario, and this was likely her last trip out West. We’ll have to do the traveling to see her from now on. We’ve always gotten along well, and she’s always made me feel like part of the family from the very beginning.
So, things moved along pretty fast after her visit and before I knew it, November 6th was here and it was surgery time:
IMG_3231
Does she survive Surgery??? Does the Lady Garden live to have another trimming???
I’m posting this now, and part 2 will continue shortly…so I guess at least one answer is yes. Thanks for reading so far!! I know a lot of you have already read all about this from my Facebook posts, but I still appreciate those of you who are following along!
Remember…there is always hope!