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, unretractable 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!

Getting Ready For Surgery, Part Two

Thanks for sticking with me on this adventure. If you’ve been following along, surgery is set for Feb. 7th for my Total Hip Replacement (THR) of my right hip. This has been needed since 2010, because of arthritis and because of something called Femoral Acetabular Impingement. The link takes you to some great information about why I’m having this surgery done – one of the other things I experience besides pain is the constant noise of my hip snapping, popping, clicking, etc. when I walk or move. You wouldn’t think it would be a big deal, but when you have to listen to it 24/7 for years, trust me…it’s a BIG DEAL!.
So, now that you know WHY I’m having surgery, let me tell you about some of the tests I’ve had done, including the surprise tests that happened, and then I’ll tell you about my surgeon, Dr. R. Stephen Burnett.
For any surgery, you have to undergo regular tests to make sure you’re healthy – blood work for various investigations (checking for infections, etc), an EKG to make sure your heart is functioning properly, a chest x-ray to make sure there is no pneumonia forming – those are the basics. The doctors like to have them within 3 months of the surgery date, so I actually had to have them redone. No big deal. Because I have Type 2 Diabetes, they also check my A1C blood sugar levels – an average of my blood sugar levels over a 3 month period. You generally want those to be under 6 and mine this time around were 6.2 which is pretty good. I use insulin to manage my Diabetes, injecting 14 units of it every night into my stomach or upper thighs on a rotational system. I admit, I often let my Diabetes take a back seat to all my other health issues, and I often forget to check my blood sugar levels on a regular basis, but overall, I’m keeping it under control, so that’s a good thing.
Now, in addition to these regular tests, I had a phone call from Dr. Burnett’s office, telling me they had set up a Bone Scan and CT Scan for me for Monday, Jan. 30th and that Dr. Burnett would want to see me to discuss the results of these tests prior to surgery. The only day he is available to see me? The day before surgery. Instantly, my stomach goes haywire and my brain goes into overload and I’m thinking “he’s going to cancel the surgery!!”.  I mean, I have no real reason to think this…it’s just more tests and there hasn’t been a recent bone scan or CT, but because I’ve waited so long for this, I’m wired to believe it’s not going to happen, because I was led to believe it was going to happen 6 years ago in Calgary, and it didn’t. There’s still a tiny part of me that is waiting for someone to say “oh, sorry…no can do…dreadfully grieved…move along now”.
Anyway, fine…I send a note to his nurse Angela, to see if she can find out why he’s doing these tests and is it going to impact the surgery, and her first response back is that she doesn’t see anything on his notes but she’ll try to snag him to ask him and get back to me in a day or so.
So on Monday, I went for the tests, still with no answers. The bone scan is a two-part test…in part one, you get an injection of a nuclear tracker that spreads throughout your body and several pictures are taken in a special type of scanning machine. After that, you’re allowed to leave for a few hours, to give the tracker time to spread throughout your body. You arrive back at your appointed time and undergo a series of pictures – I think it took about 10 minutes for mine to be done.  The CT scan is straightforward – there was no contrast used in my test, so no IV and no medicine that makes you feel flushed and like you’ve pee’d yourself. If you’ve ever had that medicine before, you know exactly what I’m talking about. All in all, the actual tests took about an hour – it’s the waiting in between for the nuclear tracker to spread that took up the most time. You can leave while you wait, but I live too far away and take the bus into town, so I just hung out at the hospital, ate lunch, drank my requisite 2 bottles of water, and played games on my phone.
On Tuesday, I heard back from Angela, saying she had received the results and passed them on to Dr. Burnett and also confirmed he was still going ahead with my surgery. PRAISE GOD!!! I have never been so relieved in all my life!!!!  I couldn’t wait to text Ray and my kids and my dear friend Charlotte, as well as share the news on Facebook. I simply could not stop grinning!!!!  This is really going to happen!!!
Now, a few words about my surgeon. Dr. R. Stephen Burnett.
burnett
I met him for the first time just a couple of weeks ago (remember, this was before the bone scan and CT scan) and thankfully had been warned that he didn’t have the best bedside manner. He introduced himself to me, I introduced Ray, and then he proceeded to share with me that my lab work looked good, so we were good to do. He told me that he preferred to use the ceramic head rather than the metal one that BC Health covers the cost for, so it’s a charge of $746.00 that I have to pay out of pocket, but it’s superior in function and long-term usage. He asked if I had any questions, which I did, and that was that. Ray and I arrived 30 minutes early for the appointment, waited another 30 minutes to see the man and we were done in 5 minutes.
He’s very much an “all business” surgeon, so it’s a good thing I wasn’t looking for the hand holding type. I did expect him to be more talkative (he wasn’t) and to share more information (he didn’t), especially about the artificial hip itself. He didn’t have my full file with him…he didn’t even realize how quickly my surgery was coming up!!! That being said, I’ve also heard from several sources that he is the absolute best in the business when it comes to hip surgery, especially with more complex cases, so I’m going with what a friend of mine said – I want a surgeon who’s all business and a Family Doctor who is more personable and hands on. He wasn’t rude, or anything like that…just not quite what I was expecting.
So, I will see him this coming Monday, Feb. 6th to discuss the results of the bone scan and CT scan. I did see my family doctor already this week though to get the results and to discuss any last minute issues regarding the surgery and things like my medications and when to take them on the morning of the 7th, etc.  Dr. Leong has been my Family Dr. for 3 years now and truly is the hands-on, caring Family Dr. so I was glad to have the chance to see him once more. He took the time to go over the test results with me, so if Dr. Burnett doesn’t go through them as thoroughly, I at least know what’s happening. And what is happening you might ask? Well, thanks for asking. 😉
What the tests showed is that in addition to the hip impingement we know about and arthritis we know about, I apparently also have severe arthritis in the lower lumbar spine which is the cause of my lower back pain. Now, keep in mind that I have bone spurs up and down my Thoracic spine and now we find out the lumbar spine is a mess – basically what the Doctors want me to be aware of is that after the hip surgery, if I still have pain, not to feel like this was a failure…it just means that we need to follow up on the back problems and start treating them. Oh yes my friends…with me, the fun never stops!!!
So, what’s next? Well, the last thing before surgery is what’s called “The Prep”.  On Monday night, I take a shower, using a special sponge called an Antibacterial Chlorhexidine 4% sponge. Everything gets scrubbed from top to bottom, then a clean towel is used and clean pajamas are put on and the bed is made with clean sheets. Nothing to eat after midnight, and nothing but clear liquids to drink until 3 hours prior to my arrival time of 6am at the Hospital – and that includes black coffee!!! Yay!!!  In the morning, I repeat the shower, using a different clean towel to dry off – put on loose comfortable clean clothes and shoes that are easy to get on/off and then we head to the Hospital for 6am. I am the first scheduled surgery of the day, which is fantastic – unless there has been an emergency that’s come in the night before, everything should run on time.
Once I’ve been admitted, I’ll be taken to my bed where I’ll be asked to change into a gown. At some point, required paperwork will be filled out, an IV will be started and things will start to move too quickly. Ray and I will be able to be together until it’s time to move to the pre-op area – but he actually has an appointment at the Hospital that morning for some Volunteer work he’s doing so he might need to leave before then anyway. Then, it’s off to the OR!!!  I will be having a Spinal Anesthetic instead of a General, so that will be administered. I’m opting for as little sedative as possible…I’d actually love it if there was a mirror where I could watch them replace my hip, but since I doubt that’s possible (and since they’ll take my glasses away and I’ll be blind as a bat anyway), I’ll just stick to listening. Once the surgery is over, it’s off to recovery and then eventually, my room. I’m hoping I’ll only have to stay for a couple of days and I’m praying that the surgery won’t cause a Fibromyalgia flare-up or a flare-up of my Trigeminal Neuralgia. I won’t get my hopes up…every surgery I’ve ever had has made my Fibro flare, to the point that I felt like a semi truck had run me over and dragged me a hundred feet. I didn’t have the TN back then, thank God!
So my friends…that is what the next steps look like. I will post a very short note on Monday night, and then again as soon as I can when I’m up to it later. In the meantime, remember the motto:
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ps: Geez, I almost forgot this part….on Thursday, when I was seeing my Family Dr., my cell phone buzzed (it was on mute) and when I checked the messages, there was one from Dr. Burnett’s nurse, asking if we had somehow forgotten to send her a copy of the invoice for when we paid for the ceramic head that he’s using. Yeah…the one that WE FORGOT TO PAY FOR!!!!!  Oh, my word…I couldn’t believe that we had forgotten to pay for the damn thing…I could just see it in my head….me on the operating table and the good doctor holding it in his hand, waving it at me, saying “would you like this???? It’s going to cost you!!!!!!!”
I paid for it on Friday. In person. At the hospital. And I took pictures of the invoice, marked paid and sent them to the nurse. WHEW!!!!!!!!
Remember, there is always hope!
 

Getting Ready For Surgery

Woo Hoo!!!!  Things have been super busy since my last post. As I said, Feb. 7th is my surgery date, at the Royal Jubilee Hospital in Victoria, BC.  Since I posted that, I have received a letter from Island Health, indicating that I’m the first surgery of the day – I check in at Admitting at 6am!! My Surgeon is Dr. Stephen Burnett (more on him in another post) who is apparently one of the best in the business!
My husband Ray and I have attended the mandatory Education Class for all patients undergoing a Total Hip Replacement (THR) or Total Knee Replacement (TKR). It’s a 2-hour class put on by Rebalance MD, the Physicians Group of Orthopedic Surgeons who perform all of the Ortho surgeries in Victoria. It’s lead by one of the Orthopedic Nurse Navigators – in our case, Britta Henly, and takes you through all of the information you need to know about your surgery, from things like the equipment you’ll need to have at home to help you get around the house to Physio appointments to maintaining the 90º rules so you don’t dislocate your new hip. There are three major rules you have to follow for the first three months after surgery

  • No bending beyond 90º
  • No crossing of your legs
  • No twisting at the midline

They don’t sound all that difficult until you realize how often you cross your legs without even thinking about it, or how many times you twist in your seat to get something. Even getting in and out of the car is a huge new task when you can’t bend beyond the 90º range. I’ve been practicing, and actually had my hubby Ray film me, so I was doing it properly and could look back at it to make sure it was right.
We’ve also gone ahead and purchased all the equipment I’m going to need for the surgery – a two-wheeled walker, raised toilet seat, bathtub transfer seat, long-handled reacher, crutches (I already have a cane), a 2″  foam cushion for in the car and for other seats to make sure the 90º angle is maintained when I am sitting, and a cryotherapy machine for icing constantly to keep the swelling down and to help with pain. My insurance company will cover the cost of the equipment and we thought it made sense to buy, rather than rent since I’ll need to have the other hip replaced, as well as likely needing knee surgery too. We can then keep and store everything, or sell it when it’s no longer required.
I’m also using a CPAP machine now since my Sleep Apnea really does need to be treated and the surgeon wants me using it in the hospital after surgery. It’s better for my recovery, and I can’t argue that, so I’ve bought a female-sized facial mask – with the nasal plugs instead of a full face mask – and it’s MUCH more comfortable to wear!! Unfortunately, I can’t use it when I have a Trigeminal Neuralgia flare-up, which happened a couple of nights ago, but I’ll do the best I can.
So, that’s it for the getting ready, equipment wise. Next post…the Surgeon, the tests, the unexpected tests, and the stress!!!!  I shouldn’t be worrying, but I am. I have to remember…
There is always hope!
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