Daily Journal – May 12


The last couple of weeks resembles the “Great Science Experiment!”  I originally visited my doctor for a nerve on the right side of my face being sensitive to touch and radiating pain with even the slightest pressure. We had already decided on previous visits that 2017 would be the year to see an orthopedic doctor about the erosive arthritis in my right hand and to see if I could find relief through pain management for my SI injury. This has resulted in me feeling quite overwhelmed. It seems that there is either physical therapy or a doctor appointment every day. Take my advice and do not take a “grocery list” to the doctor! It is not conducive to an introvert personality to have so many appointments in a short time. As you read on, you’ll see how my story reflects my INTJ personality.

For anyone wondering (lol) the MRI did show that I have a brain – and, it’s quite normal! Imagine that! The MRI showed no abnormalities but also no reason for the nerve pain. The nerves are too tiny to be seen on the test. My doctor said it could be something as simple as a kinked nerve and it will straighten itself out – hopefully soon. It’s way past wearing on every other last nerve. Most facial movements cause it to either hurt or send a strange sensation down my face. The nerve originates at the brain and travels through the skull and separates into three nerves, each servicing a third of the face – top, middle, and bottom. It is the upper third that is giving me problems. So, it’s a wait-and-see type of thing. Wait and see doesn’t work well with my personality so it’s a little (lot) trying. I am not the most patient of people.

The back/spine doctor that I had an appointment was nice enough but wanted to give me an injection in SI for the pain. He was explaining how they use an x-ray to insert a tiny needle to inject the medicine into the SI. I will tell you right now that I DO NOT have a poker face. You can read my face as though it had words written across it. He stopped mid-sentence and commented, “that doesn’t appear to be an option?” Dude! You think? Nope, nope, and nope!

For those of you who do not know where the SI is located, I will explain (short explanation). If you look at a skeleton, it is between the hip bones. It separates to allow for the birth of a child. Knowing this information, can you imagine the look that must have crossed my face? My imagination was running wild! You want me to bare my ass (excuse my language) and you want to stick a needle into my SI? Uh…nope, nope, and nope! Now, I have no idea exactly how they do this, but my brain was telling me there was no way that was going to happen! Doc, come down off the ledge and let’s start at the bottom of the ladder!

He was kind when he mentioned that is what they do there (at the hospital). Imagine if you don’t think out the scenarios and just agree to what the doctor tells you. I ask questions and then more questions, and then follow-up with more questions (the personality thing.) He was also kind enough to tell me that it doesn’t always work and some people need a shot every couple of months. What was going through my mind was, you want to stick a needle in me and then it might not even work? Nope, nope, and nope!

I am not one to mask pain. I want to know and understand what is causing it and what can we do about it – sans the needle. I told him that I didn’t know if I should quit walking, go to a gym and work with a trainer, or do physical therapy. His answer was physical therapy and that is where I am with the back problem. I was in physical therapy last summer for four months with a concentration on dry needling, but with no exercising. I decided to try a different place and so far, I am very pleased with the results.

This time, during the evaluation, I let the PT know about my experience last year and what I was looking for – which is pain management and hopefully some healing through exercise and stretching. He listened very intently and answered all of my questions and during our sessions, explains what he is doing and how it affects the SI joint. The last PT I used didn’t like when I asked questions and really didn’t like that I did research when I went home. This PT has been very open and receptive, even giving me things to look up for information. I am finding relief through the exercises and manipulation of the muscle (that did not heal properly from my fall.) He also explained that dry needling is good, but only if followed up with stretching and manipulation once the muscle is relaxed. Information fell into place for me. I have to admit though, the 15 minutes of heat at the end of each session is my favorite!

I know this post is getting rather long, but here’s the story about my appointment with the orthopedic surgeon. You know it’s not good when the doctor looks at you like his last meal! First, I saw the nurse for the usual and when she saw my allergy to iodine, she remarked that might be a problem because the doctor used iodine at the injection site.  “?” It took a moment for my answer, “That won’t be a problem” to register. Geez! Why does everything involve a needle?!

First, he wanted to cut open my fingers and scrape what he referred to as bone spurs on my joints by the fingernails (if it has a name, I don’t know it), then fuse the joints. One-at-a-time. This would involve six surgeries! THEN, there would be a joint replacement of my index finger/thumb on my right hand (the one affected by erosive arthritis). I was in pain just listening to him. Once again, it’s like – come down off the ledge doc. When I burst his bubble, the next suggestion was a shot. Again – masking the pain. Nope, nope, and nope! We settled on physical therapy, which I will not begin until I work on my SI. Too many appointments!

The bottom line of that story is I may eventually have to consider these solutions, but not until I’ve discussed with my oncologist how surgery might affect my blood disorders. Any type of blood loss will affect my red cell count and platelet multiplication in a negative way.

This all happened after I made it to the hospital for the appointment only to have GPS route me out of the parking lot, a half mile down the road, u-turn, back to the parking lot I had just been in, and then tell me I had reached my destination. Say what?!

That concludes my “Lucy” adventures for the last two weeks. Thanks for stopping by!

Two rare blood disorders?

 Can you be diagnosed with two rare blood disorders?Apparently, you can.

On Tuesday of this week, I had a doctor’s appointment with my oncologist. Just the fact that I now call him “my” oncologist is a little unnerving.

     He added a second rare blood disorder to my original diagnosis of Essential Thrombocythemia. He attached Polycythemia Vera to my blood disorders.
     Essential Thrombocythemia causes the bone marrow to produce too many blood platelets. Polycythemia Vera is an elevated red blood cell count. One of first courses of treatment for PV is to have the person give blood to lower the red cell count. I cannot give blood because my blood platelets would think they were losing some of their friends and scurrying around finding (making) more. He called it a “double-edged sword”. Doc will also be monitoring my blood every three months for the immediate future.
     Hubby made the comment on the drive home that it probably had something to do with my menopause and as soon as that cleared up, everything would straighten itself out. I was thinking – but not saying – I’ll let you and the oncologist talk about that one ‘cuz I’m not touching that with a ten foot pole. Then, I thought, could he be in a larger state of denial that I am. Probably.
     Then, as I was sitting down typing, trying to wrap my thoughts around all of this new information, I looked at my arms – which happen to be the extremities that I can see as I sit here typing – and this picture show began playing in my head. I could see the bone in my arm and the little blood marrow elves were working so diligently at producing blood platelets that they are exhausted. I want to tell them to slow down and rest.
     This brings me to one of the symptoms – tiredness. I have been extremely, unexplainably tired for the last couple of years, so much so, that I began taking a B-12 vitamin and then a multi-B vitamin – to no avail. I take enough Vitamin B to give an elephant ADD. I’ve been so tired that when I actually wake up and feel rested, I want to sit up and say, “Wow! I don’t feel tired!” I am just tired of being tired. AsJeff Foxworthy would say, “Here’s your sign.”
     Then, another picture flashes through my mind of the little Keebler elvespulling on the icing bag and making huge, beautiful, red blood cells and them joining the already overloaded blood cells cursing around in my veins. Remember the Keebler cookie commercial where the elves pull down on the chocolate icing bag and chocolate icing plops down onto the cookies? Now you can understand why I don’t watch scary movies. My imagination has a life of its own.

     The doctor also told me that within the year, he would probably have to take a sample of my bone marrow and bone to analyze. He was also adamant about us NOT going home and watching a video of it on the internet. He does not know me very well. I cannot look at a cut without losing my lunch. Besides that, someone already told me about their experience having bone marrow extracted. It wasn’t a pretty sight. I do not need to watch a video of it. My mind is a terrible place to be on its own – without the extra help. Apparently, they are having a problem with people going home and watching videos of procedures and then they are hard to calm down. I asked him how much Valium they give. He made it a point of telling me that they use a local. So much for visiting Happy Land.Hubby, not being privy to the conversation I had about the bone marrow extraction, asked Doc to explain the procedure. Doc then asked me to sit forward and he poked me in the behind on my pelvic bone. My response was a loud yelp. He poked in the exact spot that I have had a pain for a few weeks. I explained what happened. As if that wasn’t bad enough, he said okay, and did the same thing on the other hip. He then proceeded to tell Hubby about the procedure (holding pressure on my nerve the entire time). Hubby – one thing – payback’s a bitch! That hurt.

     While we were sitting in the waiting room, a woman sat down next to us and proceeded (without prompting) to tell us her life story. She did not even introduce herself. I guess she needed to talk to someone. She told us about her diagnosis and treatment, and a lot more. Actually, more than I needed to know. Maybe she doesn’t have anyone to talk to. She did say something that I had not voiced. She said that she was angry and her husband did not understand why. She tried to explain to him that she was angry that her body was betraying her with the cancer. I could understand that.
     I feel the same way at times. I look at my arms or my legs and it is as though I can see my body at war with itself; and I get angry. I don’t act on it and I don’t tell anyone, but the feeling is there. Then, I just step back and tell God it is in his hands. I want it to go away, but His will be done.
     That is about all I have to ramble about today; other than, I finally organized all of the books that I have to review. They are all neatly placed on shelves with a sticky note with a number to coordinate them to my spreadsheet. I feel so accomplished! And, my sister dropped by and I unloaded most of my donate box to her. As she was leaving, she made the comment that she felt like a bag lady. I decided that my addiction to bags had finally come to the point where I needed to gift someone with those that I no longer use. Even though the bags are used, they have all been carefully chosen and lovingly cared for and, they are like new and therefore, are like gifts.
     I even did something I normally do not do. I actually gave away a few books! It is also fig season and I have been busy canning figs. There is a bird nest in my tree and for some odd reason; the momma bird thinks the tree belongs to her. She may be finally realizing that I mean no harm to her or her babies because she hasn’t done a fly-by lately. That was a little unnerving the first time it happened. I even managed a few pictures after I parted a bunch of leaves and the little birds opened their mouths thinking I had dinner for them. I hope you enjoy them.