I have not been around lately, as much as I would like to be. I have been so sick with my IC (interstitial cystitis). I had an interstim die and had to have it replaced yesterday. This was the last of three surgeries in as many months.
After yesterday’s surgery I was sick to my stomach, dizzy and unable to function properly. They claimed it was the anesthesia. But I thought maybe it might be the volume of antibiotics they had to give me, which makes me weary of taking the antibiotic pills I need to take. The total of which will be 14 days worth.
The last interstim I had replaced, in October of 2016, was not this bad, but the antibiotic pills I had to take sent me to the emergency room because I was unable to stop throwing up and became dehydrated.
I would have ended up in the ER yesterday afternoon had it not been for my personal paragon paramedic. He was able to administer some anti-nausea medication with a single puncture of my skin. Something some nurses could stand to learn. It was gentle and I barely felt the prick. Afterwards, I began to feel the nausea taper off.
This morning, I am feeling a bit queasy and a lot anxious about taking the antibiotics. But I have to take them to keep my body from rejecting the implanted interstim. It is a vicious cycle.
They claim, (they being the researchers,) that IC causes pain comparable to what cancer patients feel, but since I’ve never had cancer, and pray I never do, I will not compare it to cancer. However, the upset stomach is comparable to a virus and we have all had those, it knots up in your stomach and then you toss your cookies…wonderful!
I will say that with this new interstim, I am already finding relief from my urgency and frequency of urination. This is a huge positive! Now to find relief from the stomach-ache associated to the surgery and to antibiotics that I take, starting today.
portion brassy imaginary distant uniform
A portion of me is ready for next Thursday, the day I have surgery to replace my Medtronic interstim. I had the left one replaced in October of 2016, but the right one still had some juice in it. By that, I mean it was still strong. They are actually batteries that send out electric pulses to my sacral nerve, stimulating it to fool the brain into believing the bladder is not in spasms. Having two means they work in unison of each other and are placed as far a distance apart as possible, one in each hip/buttocks area.
I do dread the pain afterwards, as it will be very hard to move around and do daily functions without severe pain. I also dread one part of the hospital where there is a brassy tech that I do not like to deal with.
None of this is imaginary, it is all science and super for interstitial cystitis, this disease where there is no known cause and no known cure.
I have not been feeling well lately. I’ve had to many doctor’s visits and too many tests ran. I feel like tired and weak. I will only have a week of rest after surgery before having to go to another doctor’s appointment. This makes me tired just thinking about it. I will do my best to sleep as much as possible during that week so my body can recover and hopefully not develop any infection. Though I do not know what antibiotic they will be able to give me, I had an allergic reaction to the last antibiotic they gave me, my arm was bright red and swollen.
Oh the fun of being me. I should wear a uniform all the time that lets people know I am ill, then maybe I wouldn’t get the looks of disgust I get when I park in a handicapped parking place. I do dare them to say anything to me, though.
I have no positives today, I am too tired to think of any. Please forgive my negativity.
Infuse, reprieve, survive – Daily Prompts
It has been nearly a week since I had my cystoscopy with hydrodistention. I was so concerned about going under, so afraid I would not survive this time. But as the time drew nearer, I had a reprieve in my thought pattern and realized I would feel much better after the surgery. After they infuse the bladder with the numbing medication, one would think you would wake up with no pain at all, but that is not the case, you are in extreme pain. Your bladder has just been reset, so to speak. It has been stretched beyond its limits and scar tissue has been broken apart. It has been taken out of it’s constricted state and reset to its normal state, whatever that might be for an IC patient.
I do not regret having the cysto/hydro, but I wish it had been closer to the date of my interstim replacement. The doctor had me scheduled for the 8th, but has bumped it to the 15th. He has to go out of town on the 8th. I will survive until then. I have my IC diet to keep my bladder calm until then. I have my IC diet to keep my bladder calm afterwards as well.
It is imperative that I maintain a bland diet to keep the flares away. I showed you what my bladder looked like in my last post. It was horrible, but maybe you did not get that all the blood vessels and blotches of blood were not supposed to be there because you did not see a normal bladder to compare it to. A normal bladder is smooth and does not have enlarged blood vessels or bloody blotches. While the IC bladder is riddled with bloody spots and enlarged veins and blood vessels. I will include pictures of both in this post.
I’m looking forward to the 15th, I will have a new interstim that should last at least 4 years, maybe 5 if I can run it a lower wattage. I really consider these things to be a miracle in the IC world, though some do not agree with me. For me, they have been a miracle.
I feel like an unmoored boat adrift in the sea. I have so much going on. This doctor, that doctor, this test, that test, this surgery, that surgery. I need a catapult to get me from one place to the other in time for my appointments. All of these doctors appointments are taking away from my blogging time! It is leaving a negative impression on my stats.
To top it all off, some want to change appointment times with me and that causes me to have to rearrange the rest of them. My next surgery date was for June 8th, but has been moved to June 15th. I had tests scheduled for then, but had to move them to earlier in the month so I can have the testing done by my endocrinologist appointment on June 22.
Too much going on right now. I also have my grandson’s 8th birthday coming up. I have no idea what to get him, he has everything. I may just give money this year. I don’t know what to get him, any ideas?
My Avon blog needs more followers and customers too. Or you can go directly to my Avon Estore and make a purchase, it would help me greatly right now with all of the traveling I’m having to do for doctors appointments, I could use the gas money. I don’t sell door to door, only online because I’m just too sick to go door to door. I want this venture to work, so any help you can provide would be great, sharing with your friends and family would be wonderful! I appreciate you in advance!
As you have come to know me, you have figured out I’m notorious for writing about my illnesses. I sometimes need to vent and this blog is a good place to do so. I do apologize to those that get tired of reading about it but it is not a farce when I descend into the depths of depression due to total fear.
Monday May 22th – Cystoscopy with Hydrodistention to try to reset my bladder and get it out of its constricted position. Break up some scar tissue and allow it to function better, which means going less often to the bathroom.
Between May 22nd and June 22th, I must have a thyroid ultrasound, 2 cortisol tests, a slew of blood work and make sure it all gets to my endocrinologist before my appointment.
But, on June 8th, I will have my right interstim replaced. This is a hard surgery to go through, it is very painful afterwards.
Now that I’ve told you my timeline, let me explain why I am so afraid. I have been put under so many times but never so close together. I was put under April 3rd, will be put under May 22nd and then again June 8th. I worry about waking up!
If there are any anesthetist out there that can reassure me that my fears are uncalled for, I would greatly appreciate hearing from you.
I am on the precipice of defeat. Tuesday my right interstim died, yesterday our air conditioner died. I checked my blood pressure at just the right time to see the numbers be way too high. But stress will do that to you. I had visions of the AC man not having the parts to make the repair, or the need for repair being so extensive that we wouldn’t be able to afford it, but it had to be done because I can’t live in the heat. My pounding headache is proof of that.
Let’s review: I have a surgery scheduled for Monday the 22nd. My right interstim died on Tuesday and they can’t do both surgeries at the same time, so I’m told. I have to see the Medtronic representative today for confirmation that the interstim is dead and to set up a surgery day. I’m seeing a new endocrinologist that needs a thyroid ultrasound and Cushing’s testing along with a lot of blood work, within a month. Plus he put me on a new medication that is making me feel weak. So after surgery, whether I’m feeling like it or not, I have to go get testing done for the endocrinologist the following week. I am overwhelmed.
And I’m not going to lie, I had to look up this word of the day. I had never heard it. I do enjoy learning new things, that’s my positive for the day.
I have some tests to get done before my next appointment with my endocrinologist. I am also scheduled for a cystoscopy with hydrodistention on the 22nd of May. But, and that’s a big but, last night my right interstim died. It is an implanted battery with wire leads going into my spine to stimulate my sacral nerve to control the function of my bladder and it helps me with pelvic floor dysfunction too.
So, I have to see a Medtronic representative to confirm that it is in fact dead before going under the knife. Hopefully that will happen this coming Thursday after I pre-register for my cystoscopy and hydrodistention at the hospital. Oh the things I have on my plate are numerous.
Depending on the time they can get me in to do a replacement surgery will depend on when I can get a thyroid ultrasound for the endocrinologist and the other tests he has me scheduled to do before seeing him again on the 22nd of June. And timing is key because the tests have to come back from the lab in time for my appointment with him. All of that along with eating correctly which is near impossible when I’m stressed because I’m a stress eater.
There is no positive in this situation. My blood pressure check this morning showed a high number, my blood sugar was nearly 300 and I’m freaking out about the time line and being put under twice so close together.
I usually don’t have any qualms with being put under, but I’ve never been put under close together before, it is usually 6 months at least. I was just put under on April 3rd, so this is sooner than usual on the 22nd of May and then the replacement of the interstim. I asked the nurse if they could do a collaboration and get them both done while I was under and she said no. Why? Because they have to flip me onto my stomach to do the implant surgery, oh the pain those surgeries cause.
This is my only positive, I managed to get yesterday’s and today’s daily prompt words worked into my writings.
While proofing this, I thought of my positive, I have a great support system in my husband and son. And since blogging, I have a great support system with my fellow bloggers. Thank you for your good thoughts and prayers.
Yesterday I was feeling sorry for myself and barely found a positive about having so much going on medically right now. I have to face up to the fact that not everything has a silver lining, but there are tiny things, if I search them out, that can get me through. For instance, the hospitality of the medical staff I am usually around. So many of the staff, nurses, doctors, etc. are ever rude or distasteful. I do have a couple that are, but I don’t see them very often. And the ones I have coming up in my overloaded calendar are all nice people. We chit-chat and I can ask them anything medical and they are kind enough to answer with detailed information. I found this true with my new doctor this past week too. Very thorough and thoughtful.
I think if one tries to be on their best behavior around their medical staff, they will be treated wonderfully. I always try to give good answers to the questions I am asked and I try to be polite and considerate of their feelings as humans, not just as workers.
It really pays off in the long run to be hospitable to those caring for you, no matter your situation or pain level. They get it and will help you if you are not nasty to them. So be kind to get it in return.
As if I haven’t been through enough, my diabetes is so out of control that my new endocrinologist was concerned as to exactly what medication might work for me since I’ve had so many allergic reactions. He carefully looked at my medical history that I provided. (My own personal sheet of paper I keep handy.) He commented I had been through a great deal in my life. I agreed. He also thought I was/am a prime candidate for Cushing’s syndrome. Not that I want to add another disease to my list, but this would explain my uncontrolled diabetes and high cholesterol. He took 2 medications away and added 2, increased one and put me on the very strict diet that does not mesh with my very strict IC diet.
Today is my first day on the new medications, one is pink, I have felt very tired and listless. I slept a lot and ate very little today, so far. I haven’t noticed any side effects from the new medications, but it is early yet. I always dread new medications because of the side effects.
I have to get a thyroid ultrasound, Cushing’s syndrome test and a lot of blood work before my next appointment in a month. I will already have gone through my cystoscopy with hydrodistention before I see him again, so maybe I will not have to be taking so many pain pills.
I have to say I’m tired, very tired. My calendar is full of tests dates and office visits. Adding another doctor to the mix really filled in my calendar and I’m one that hates to get out more than once or twice a week. It will be like a rat running a maze.
Final thought – I’m going to lose weight and get my diabetes under control. I will have to figure out a way to exercise without causing an IC flare, that is a bit scary but it needs to be done to complete the above goals. I wish I had more energy to be excited about it. Either way, it will have a positive outcome.
I have unfortunate news, the surgery I had last month did not do what it was supposed to. I have a very sick bladder, by that I mean a badly diseased bladder. It causes me great pain and discomfort and sometimes the cystoscopy with hydrodistention does not do the “reset” it is supposed to do. I only had a temporary two-day pain-free stint, instead of a years worth of bearable pain. I’m right back to the bad pain I had before the April 3rd procedure.
As it was explained to me today by my urologist, I have a such a diseased bladder that it is in a constant contraction, causing me to go urinate more often than one should go and it causes great pain because it is constantly contracted. The hydrodistention fills the bladder with fluid, stretching it out, breaking the contraction and causing it to reset to a normal function. The cystoscopy is just a camera taking pictures of the whole procedure and the disease in my bladder.
So I will have another cystoscopy with hydrodistention on May 22, 2017. Hopefully this one will reset my bladder. If it doesn’t, I could be going through it again in 6 weeks to 3 months. I’m not happy about it. I have to find a positive. What could that be? Here is one, I have a chance of having tolerable pain for a year with this procedure. I also get to see my nurse friends at the outpatient area of the hospital. They make me smile. More than one positive!
Over the years I could have become a very bitter person due to illness. I’ve been unhealthy most of my life. There was a short time during my 20s when I was at my healthiest, but it vanished rather quickly. And slowly I’ve become a very unhealthy person.
I do what I can to maintain what health I have. I’m not exposed to chemicals, or substances that would make me uncomfortable. Having IC (interstitial cystitis) can be trying when you are figuring out your triggers, and I have to say I was bitter for a while, but I got past it once I accepted that this is not going away.
Now I look for the positives in life. It makes things so much easier. I don’t dwell on those that don’t want to be around me because I’m ill and I don’t get upset because I can’t do things that I once could, I don’t need to think about those things because they don’t matter any longer.
Yes, I take medication for depression, those little pills help me keep a positive outlook. I think everyone that is diagnosed with a chronic illness should be on antidepressants at some point to get them over the hump of self pity. Mine is a little deeper than self pity as I also suffer from PTSD from witnessing violence. But I had a lot of self pity before discovering how positive thoughts help me cope.
Give it a try in your daily life. No matter your pain level, look around you and find a positive. The rain is washing away the dust and dirt from the beautiful tree leaves. The sun is nourishing the plants so they grow and bloom. Which ever way it is, it is a positive. They are all around us. They are called blessings. Everyone has them and everyone needs to be reminded sometimes that they are there. Don’t lose sight of them, they will get you through everything.
Yesterday was a difficult day. I felt out of control. I bought a new Dell computer with Windows 10 and it is still blowing my mind. I like things the way I like them, so I can find what I’m looking for easily and Windows 10 is a booger at letting me have things my way. I started developing a migraine last night and had to set it aside, but thankfully, the migraine did not materialize and I only have a mild headache.
I still have a problem with the new PC or Windows 10 as it is. I do not like the bar across the top that offers a search, or fast browsing and I do not know how to get rid of it. I googled it and followed those instructions without any luck.
If you can tell me how to get rid of that bar I would greatly appreciate it. So far Windows 10 is not my friend, but the new PC is very fast and I’m slowly getting it organized.
Couldn’t we all use an apprentice? Someone to take over our chores where we leave off, or learn from our verbal instructions. Not just a house keeper that comes in and cleans once a week, because they do the same thing each time, the things that I can keep up with.
I’m talking about someone who can follow my instructions and reach the high areas that have not been touched in a long time. The top of shelves in the kitchen, that I can not reach without getting on a step stool, which is dangerous for me with my illnesses.
I have had a house keeper. She did the normal chores, but would not do the extra work I wanted done, even with an offer of extra money. She did not want to get on the step stool either.
Being chronically ill really drags me down and my housework suffers. Having someone help me reach the areas that have gone untouched for way too long would be wonderful. As I am sure it would be great for all of us that are chronically ill.
I will reach that area of the kitchen one day, those shelves will get cleaned and I will rejoice, probably with a nap. Until then, I just try not to think about it, knowing my limitations, I will have to have someone here when I do tackle that chore. Apprentice or husband, someone will be here.
I have to be so careful with fragrances due to my interstitial cystitis (IC). It has amazed me how much they affect my bladder. I once wore perfume, but now I have to opt for lighter scents, like body sprays and they have to be very light in scent. The only thing I can be certain that will not hurt my bladder are essential oils. I use a lavender and argon oil mix on my hair after a shower to smooth out tangles and keep down the frizz, it also smells pretty.
I know, I’m selling Avon now, but that doesn’t mean I have to use all of their products. I use the ones I can tolerate and the ones I’ve always loved that have no fragrance or a very light fragrance. And of course I buy the purses and shoes. I must have purses and shoes! They don’t hurt my bladder at all.
I’m not going to lie, I had to look this one up. It suits me perfectly today I am absolutely knackered. I didn’t think I was going to make it through my shower. Standing there was wearing me out. It feels good to be clean, but it feels better to be sitting down.
I have a recliner that I sit in all the time, and a table next to me that holds my laptop on a lap desk. This is how I function. I can’t sit straight up or it hurts my bladder and I can’t stand long for the same reason. I can sit reclined and be fairly comfortable with the ability to write my blogs.
Yes, blogS, I have two. This one and https://avon365blog.wordpress.com where I sell Avon. Please stop by and see what wonderful products Avon has to offer these days. There are some wonderful men’s colognes and all sorts of women’s products. Drop by and visit or go straight to my Avon Estore to look at the brochure and place your order.
I have been unhealthy my whole life. As a child I was very ill, anemia was bad, which caused a bad heart murmur, and I slept a lot instead of playing. I had a pillow that I carried with me just about everywhere. Most kids have blankets that they love, but I had a pillow. It went with me on short trips and long trips.
My mom carried me around on a pillow after I was mauled by a dog when I was two, maybe that is why I chose to have a pillow as my comfort item instead of a blanket.
Our family took summer vacations each year and my pillow went with me everywhere. Unfortunately, I left it at a motel, and by the time I realized it we were way too far to turn back to retrieve it. Mom bought me a new pillow to carry around, it took me a while to get used to it, but it grew on me and I had it for years.
We eventually moved from our home in town to a home in the country with acreage. My pillow got lost in the move. I cried for days, but mom finally confessed and said she threw it out because it was so worn out it was deteriorating, and I was old enough to stop having a safety pillow.
Funny, I’m 54 years old now and I have a pillow. I don’t carry it everywhere, but I do use it for comfort when I am hurting, I hug it tightly to my lower abdomen in hopes of easing the bladder pain. I have the same size pillow in the car and one in my husband’s truck. They are not mental comfort pillows, but they do help my bladder and the bouncing of the ride in the vehicles.
On an added note, I love dogs. I was afraid of them for about 2 years after my attack, but I met one that melted my heart and I’ve loved them since.
How many of you dye your hair? You can’t let those roots show. You must run to the salon or do it yourself to keep your hair that nice bottled color.
Hair dye is a carcinogen.
Researchers have been studying a possible link between hair dye use and cancer for many years. Studies have looked most closely at the risks of blood cancers (leukemias and lymphomas) and bladder cancer. While some studies have suggested possible links, others have not
Most of the studies looking at whether hair dye products increase the risk of cancer have focused on certain cancers such as bladder cancer, non-Hodgkin lymphoma, leukemia, and breast cancer. These studies have looked at 2 groups of people:
- People who use hair dyes regularly
- People who are exposed to them at work
Bladder cancer: Most studies of people exposed to hair dyes at work, such as hairdressers and barbers, have found a small but fairly consistent increased risk of bladder cancer. However, studies looking at people who have their hair dyed have not found a consistent increase in bladder cancer risk.
Leukemias and lymphomas: Studies looking at a possible link between personal hair dye use and the risk of blood-related cancers such as leukemia and lymphoma have had mixed results. For example, some studies have found an increased risk of certain types of non-Hodgkin lymphoma (but not others) in women who use hair dyes, especially if they began use before 1980 and/or use darker colors. The same types of results have been found in some studies of leukemia risk. However, other studies have not found an increased risk. If there is an effect of hair dye use on blood-related cancers, it is likely to be small.
Breast and other cancers: Most studies looking at hair dye use and breast cancer have not found an increased risk. For other types of cancer, too few studies have been done to be able to draw any firm conclusions.
Many people use hair dyes, so it is important that more studies are done to get a better idea if these dyes affect cancer risk.
In my earlier years, I dyed my hair regularly. Once I was diagnosed with IC, I was told that there might be a link between hair dye and bladder cancer so I stopped dying my hair for a while. But eventually I had to give it one more try to see if it had any affect on my IC bladder. I must say, I will not be dying my hair again! I went into a horrible flare almost immediately after the dye was applied. I guess I’m doomed to be a brunette, instead of a red-head. Oh well, it’s all good.
I wrote on my other blog about how I am an avid purse collector. I love them and have way too many. I just ordered another from Avon that I can’t wait to get my hands on. I always look for purses that close all the way together on top, either a zip closure or a kiss lock. The kiss locks are hard to find. You might remember them from your grandma’s days. I wish I had my grandmother’s purses. She had some nice ones with kiss locks.
I’m currently experiencing quite a bit of pain in my right hand due to carpal tunnel syndrome, I’m wearing a brace to hold it steady. Hopefully the swelling will decrease if I don’t use it too much and release the nerve that is being disturbed. I need the brace to get rid of this carpal tunnel pain, it is not in harmony with what I need to get done on my blogs.
On a positive note, I have a new purse coming! All is well and good when I get a new purse. You should jump over to my Avon estore and purchase something so I can buy more purses and shoes, I’m certain I need more shoes too. 🙂
When I was young we had a mixed breed dog named Spike. He was part Pitt bull dog and no one knows the other part. He was such a loyal dog, comforting and always by my side if I was out side.
My fondest memory is when I would get home from school after a long school bus ride and he would be waiting for me at the end of the long dirt driveway to walk me the rest of the way home. He would chase grasshoppers and jump over weeds, there really is no telling how long he had waited on me. I would lug all my books and my slide trombone down the driveway, about a quarter of a mile and Spike would see me to the house. I had a fear of someone being in the house, so I would unlock the door and Spike would race through the house and report back to me that all was clear. I would lug everything in the house and make us both a bologna sandwich which we ate while watching Gilligan’s Island.
But one afternoon a strange vehicle came chugging down the driveway. I didn’t recognize it and Spike was on high alert so I got the gun that was my favorite of my dad’s guns, a 1911 .45 automatic. I was raised to respect guns, but use them when needed. This seemed like an appropriate time to have one handy. The man parked and banged on the door. He kept asking me to open the door and I refused. He claimed he was there to look at an old truck we had for sale. I told him to look at it and leave, he said that he was supposed to leave his number with someone, I told him to leave it in the truck. But he had no pen or paper. Finally he convinced me that I needed to open the door. I warned him that I had a gun. All the while Spike’s hair was bristled up on his back and he was ready to attack.
Yep, I opened the door and the man saw the size of the gun and Spike took off chasing him, he had to dive into his truck’s window because he had no time to open the door. From there we had a nice conversation. He said he would call again when my dad was home and I agreed that would be best, all the while Spike is jumping up trying to get to him. I loved that dog.
The man ended up buying the old truck and Daddy was proud of the way I handled things. He heard the story from the man before hearing it from me. I brushed it off as nothing, but I was so scared I was shaking.
You could say Spike and I were in harmony on how to handle the man at the door. Attack first and ask questions later.
I’ve been taking pain pills for a while now. I have chronic pain. I don’t take them as prescribed, I take them as I need them, as long as they aren’t too close together, in other words, the prescription ways every 8 hours, and I may wait until 10 hours have passed. I don’t want to fry my brain on these meds, but they do numb it quite a bit and this is affecting the way I handle my blogs.
I was looking at a draft I have for PTSD and every time I do, it gives me flashbacks. I’m going to have to just let it sit in the draft folder and work on something else for a while until I can come back to it without problems. The pain pills don’t numb my brain enough to work on that page, though I wish they did. People need information on this disorder, in my opinion.
Until I can over come my flashbacks, I will add different topics of interest. Nothing to chuckle about or maybe a little something every once in a while. But I want things to be clear not opaque. Yeah, I did it, I crammed three word prompts in one blog post again.
Now you can chuckle!