Surgery Scheduled

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Well, I finally have my surgery scheduled.  I saw my surgeon and she got the date all fixed and explained what is going to be done. Apparently, she is not only going to be taking a length of my colon out, but she is also removing my ovaries, my fallopian tubes, my appendix and possible my uterus. I was surprised that she was going to remove all those things. Then she told me she was going to repair my hernia as well. So basically, I am having four surgeries in one.

Why is she removing all those things? The reason is that I am a high risk for cancer so since I am post menopausal, it is important to remove those things as well. She did not think there was any cancer but will see when she is in there.

So, I am scheduled for May 20th in Lexington. I hope it all goes well. I will update when I know more.

Getting Ready Now

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Well, all my hurdles have been jumped and now I wait to find out when surgery will be scheduled. In the meantime, we are spring cleaning the house and having a huge yard sale this coming week. We have to get everything ready and done in a week so I can rest after surgery. I am planting all my spring plants in the garden and have seeds started for summer things. I am feeling the pressure of getting it done but hey, I can rest after surgery.

My picc line was removed yesterday and I am done with the every day IV’s I had to take. I am finally untethered and feel better. I was having side effects from the medication I was taking so hoping those are now gone.

Life moves forward though. My son and his family came to visit and it was lovely having them here. Family time is always good time.

I hope you are all enjoying warmer days and springtime! I will update you when we know more about when the surgery is. Thanks for all the encouragement!

More Good (?) News

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Well, I forgot to mention that when we saw our respective specialists this week, we did have some good news. You see, my husband has been having these tremors, and our pcp told us he needed a specialist to determine if it is Parkinson’s or even ALS (Lou Gehrig’s disease).  We were frightened but made the appointment.

Knowledge is power and not knowing what is going on is never a good thing.  He saw the top guy in Kentucky. After a lengthy visit and much scrutiny, it was determined that he has what are called “Essential Tremors”, not Parkinson’s or ALS. We were relieved to finally have some answers. The doctor started him on some new medications and they should help him to slow the tremors down.

On the flip side, his balance is really getting worse so I do not know what is happening there but we are rolling with it and he is using a cane now.

We had appointments on the same day In Lexington so it made for a very long day for us. However, we have some answers and are working on the plan to move forward with my husband getting some help and for myself getting infusions before surgery. We are not out of the woods yet, but we are finally making sense of it all. As I said, knowledge is power so we feel more in control now.

Thank you for all the prayers! We truly appreciate it very much!

Under Treatment

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I am officially under treatment. I have had several set backs from this diverticulitis and been hospitalized twice more. I was recently referred to a colorectal surgeon. While waiting to get in to see her, I was hospitalized for more treatment to help me along until I could see the surgeon.  I have seen the surgeon and I fit the criteria for removal of the section of my colon that has been inflamed since November.

I do not remember if I said this before, but I have what is legitimately called “smoldering diverticulitis”. It is a medical term. Go figure, the one time I am legitimately smoldering and it is my colon. Puts life into perspective…lol

Before I can have the surgery, however, I am home with IV medication infusions daily for 14 days. I had to see an infectious medicine doctor who had me fitted with a picc line in my arm and daily iv infusions of a powerful antibiotic to prepare my body to be as optimal as possible for surgery. They could do the surgery at any time, but they want me optimal for better results.

I am giving myself the infusions because my insurance does not cover home health care. It is fine because of my nursing background and it is going rather smoothly. It is far easier than driving over an hour each day to the hospital to get them, that’s for sure.

So, here I sit, infusing, and waiting for more ct scans and bloodwork when I am done. I am on day five of 14 days of infusions. I cannot wait to feel normal again. Well, as normal as I can feel.

This is how I used to feel when on so many meds for lupus. I am weak, tired and feel like crud. I want to be back to how I have felt for the last few years, with energy, and doing things that make me happy, like gardening. Soon, after surgery, I hope to be back to my perky self again. If not, well, I guess I will roll with what life throws at me.

I will update as I go through this process. I hope you are all well and enjoying the spring like weather!

 

Here I Go Again…

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**WARNING** images in post some may find graphic

Well, another day another hospital stay. Yes, again. My “smoldering” diverticulitis has not stopped and it required another hospitalization. I am seeing the colorectal surgeon on the 20th of this month but it seems my body has decided that it does not want to wait.

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By being hospitalized, it gives the doctor the chance for strong IV antibiotics to be administered to help me limp along until I see the surgeon. I was in for 3 days and got home last night. I am now on oral antibiotics and pain medication.

How much pain? Well, I am better now but while hospitalized, I was medicated with morphine. It hurt so bad that I cried. It was that bad. As a lupie, you live with a low hum of pain on a good day. This pain rocketed me to the 8 to 9 out of ten range. I have only used a 10 level of pain as an acute and life threatening level.

I was a bit of a baby though and it felt like I could die. Yes, die. The pain was horrendous and it stopped me from all activities. I could not eat because it would hurt. Even water became hard to drink. I became dehydrated which did not help either.

I called my pcp who sent me to the ER. There, the really great doctor took his time, listened to me and how I felt. They performed a CT with contrast and yes, it was not pretty. (I could have told them that, lol).

Anyhow, once we knew there was no perforation, I was admitted for close observation and IV infusions. This was an experience as well because the hospital was full and so I got the last bed.

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Here is the long story short version, I was moved the next day to another room. It was due to my roommate. Anyhow, I finally got sleep and they decided to let me come home the following day, day three.

I am home and on bedrest, eat lightly and soft foods. I am weak and tired. This is giving me so much grief. I eat right, and try to do the best but it seems like this has gotten the better of me.

Here is the part pertaining to lupus. You see, the doctors explained to me that lupus could actually be the root cause of all this. As anyone with lupus knows, lupus attacks anything it can. The doctors said it could well be the flame that lit the match as it were. So, a lupus component, go figure.

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I am home now and resting as directed. I see the surgeon soon and hope that soon this pain in the patootie will be resolved.

Winter Or Not?

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We have gone from the polar vortex and negative degrees in wind chill to today which the temperature topped out at 73 degrees. It is no wonder my bones ache! Our bodies are not designed to go from -10 wind chill to 73 degrees a couple of days later.

I think mother nature is bipolar. How is your weather where you live? Are you having this crazy fluctuation in temperatures? If it would make up its mind and stay either cold or warm then I would feel much better. As it is, I am aching and feeling the barometric pressure each new front.

I hope you are all doing well.

 

Polar Vortex? Major Gripe Too!

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Gripe alert, gripe alert, gripe alert…read at your own risk…

Well, tonight and tomorrow we are in the grips of the Polar Vortex. Those of you in the upper states and Canada are dealing with some temperatures that seriously are scary to even contemplate. New records are being set tonight and tomorrow. Not good records to set but nevertheless they are new records.

As a lupus patient, times like these are when I typically hunker down at home and do not go out for any reason. My body is already feeling the pain from the barometer dropping and the temperature dropping. My joints are giving me such grief. I hurt. All over.

I am using my new supplements regime, but I am adding a new player in the mix because of all this crazy cold weather. I am back to taking my lemon balm tincture. I am hoping this will help me deal with all these pains.  It will help me sleep so that is what I actually need. I have been having insomnia lately.

Why you ask? Well, let me explain. Our health insurance (a medicare plan) has decided that we now have a deductible factored in on January 1, 2019. We were not told of this. I asked around, and the doctors and pharmacists said the same thing, apparently this is another of the Obama doesn’t care plan phasing in. Last January it stopped paying for several of my pills. This year, we have a deductible when we had none before. I am only on one rx, thank goodness, but husband cannot be without his medication. EVER. So, I went to get his pills at the beginning of the month. Imagine my surprise when I was told that two of his pills, which on December 31, 2018 cost us $3.50 each, now cost us $200.00 for both. Oh, and lest we forget, his other pills were $50, $20, $20, $20 and $25. This is not including some he is not going to be taking anymore because he can take a supplement for it instead.  Oh, and they raised our premium too, so they are now taking out twice the amount for our premiums and not paying for pills until we meet the $5,100 deductible. Yep, they sure did. One more thing, they also said our local pharmacy is not in the network now so we have to drive 40 minutes to another town to get our meds now too.

We have been scrambling trying to figure our what to do. One of his doctors saw us and said she can give him samples so he has one med for sure but really, there is nothing we can do about the others. We make too much money (we are $10 over the limit on one agency to help us and $300 over another) to get any help of any kind. We cannot afford his pills and eat.

My husband has seizures, he is bipolar, and has some schizophrenic issues when unmedicated. Without meds, he will end up in an institution. Seriously. This is not a good scenario.

What did we do? We changed insurance companies beginning February. This insurance is cheaper and covers us like the old one used to do. We can see our same doctors and the premium is way cheaper, plus we have much better prescription costs.

You see, living in rural Kentucky, our county only offers PPO plans versus HMO. I was already paying out one third of my gross income for my insurance before this happened. In our county, there are only 3 medicare plans available because it is rural. So, we had to pick between the two remaining plans at our disposal. I hope we did good. Time will tell but I have been a mess worrying about all this stuff. Sadly, if we moved a few miles to the next county, we could have better plans available that cost much less. How sad is that?

Have any of you been hit with new “changes” too? We had to borrow money to get his pills this month so I am hoping next month is much better for us. Anyway, be sure to check your own policies and make sure of what you get. Since we like to eat, we decided to change things. I sincerely hope this will help us. If not, I do not know what we will do. It all just sucks, you know? It feels like they want sick folks to give up and just die already. If you have to choose, which do you go with? Eating or pills?