I am having surgery (update)

So something has happened to me and I thought I would talk about it.

A few weeks ago I noticed a little marble sized hard growth on my back. At first I thought it might be an ingrown hair on my back, but I wasn’t sure if it was anything I needed to worry about. I didn’t go to the doctor because the clinic we go to was having issues finding a doctor that would stay long enough to allow me to check in with them.

I was going to call them, but they called us asking if we would come see their new doctor because they wanted to introduce her to some of the less neurotic clients lol. I’m occasionally on the neurotic side. but I’m usually very calm, so I was a safe bet.

So we went and she looked at it and said it was probably an ingrown hair, which hello, I nailed. She gave me a antibiotic and said when you are finished in 7 days, we will refer you to someone to have it lanced and drained. Well, 7 days pass and I call them to let them know it’s time. By the way, it grew from that little marble and now it’s twice as long as it was.

I went to this general surgeon and was expecting him to lance it and drain it in that visit, but he told me that it looks like I have Kaposi Sarcoma. I didn’t know what that meant at the time, but it sounded bad and I went from excited to have this thing gone to feeling sudden dread. He couldn’t lance it or drain it, instead he told me they would need to do surgery to remove it, which will be this week on Thursday.

The next day the new doctor at the clinic called and wanted to know what he told me and I told her he said it was Kaposi Sarcoma. She told me that he didn’t write anything in his report about that, just that it needed surgery to remove.

Kaposi Sarcoma causes purple blotches on your skin and is a very rare cancer usually only seen in AIDS patients. Well, I do have the AIDS virus. I was diagnosed with  HIV in 1991, and then 2 years later I was diagnosed with Pneumocystis pneumonia, which the doctors said was a symptom of AIDS. Gradually over the years from 1993 to 2000 my t-cells had dropped to 50 and I was essentially dying slowly. When we moved to Bakersfield, the HIV/AIDS specialist doctor at the clinic I currently still go to changed my medicine. I was still taking AZT in 2001 believe it or not. Anyway, they changed my medicine and my t-cells gradually raised and I’m still alive and today my t-cells are in the 900 range and my viral load has been undetectable for years.

I told you that because the new doctor at the clinic told me that a patient who has a viral load and t-cells in the 50 range would be more likely to get Kaposi Sarcoma than me, so it’s unlikely that I have this rare type of cancer. Plus my back doesn’t have any strange colors. There is bruising on the skin over the lump, but that’s to be expected considering my skin has stretched a tiny amount and that this lump has caused a bit of trauma to the cell structure of the skin where the hair is grown. That spot has a open cell where the hair grows. I know this because I tried squeezing what I thought was pus out, and some did come out, but it was too hard and it hurt too much to come out.

So there are still a few more days until surgery and I will update this post if it’s a small enough update, but if it’s a lot to talk about then I will start a new blog post. Otherwise, I will keep you posted on the progress when it’s all over.

Update: Today is Thursday 8/31/2017 and I had my surgery. The doctor looked at the area that needed to be removed and noticed that the bruising was gone, and told me that he thought it was kaposi sarcoma due to the fact that he saw the purple color of the skin, and he realizes now that it was a bruise from the growth which was injuring my skin and causing it to bruise. So now he knows it is not kaposi sarcoma. So that’s awesome that he doesn’t think I have cancer.

He did the surgery and I am in a lot of pain, as I should be considering I had surgery lol. He said he will send it to a lab and find out what it was and he will let me know next time I see him. In the meantime, I’m not allowed to lift any weight or exercise for 2 weeks and I can’t shower for 2 days, which will be extremely difficult for me since it’s so hot and when it’s this hot, I usually take up to 3 showers a day. I absolutely cannot stand being sticky, sweaty and stinky. Luckily the right guard lasts a long time. We have some surgery wipes that I can use to at least clean my body.

So when I find out what the issue is, I will edit this post again with another update.

Update: Wednesday 9/6/2017

My follow up appointment with the doctor revealed that it wasn’t an ingrown hair, it wasn’t Kaposi sarcoma, it was an infected sweat gland. Who knew? So that’s a relief that it’s not cancer.

How I Beat Insomnia

insomnia

Insomnia sucks. You lie in bed in a dark silent room with your eyes closed hoping to drift off to sleep, but all you can think about is new ways to beat the bad guys in your favorite video game, or how you would design your tiny house layout. Maybe you are thinking of something that someone said and it is bugging the heck out of you. Perhaps you are having flashbacks of a time when you were treated poorly by someone or a group of people. Or fill in the blanks.

That’s been my problem for several years. I remember a time when I could barely keep my eyes open after midnight when Ghost Hunters was doing a live ghost hunt on Halloween, but for the last few years, staying up past midnight was a non issue. In fact, I was lucky if I was going to bed by 5am. Insomnia has been awful for me for a very long time. I was taking Ambien for more than 10 years, then the insurance stopped paying for it, or any other sleeping pills for that matter. I’ve been buying over the counter sleeping pills. Your body becomes immune after taking so many sleeping pills. One of my doctors told me to take Benadryl, and I did, but that too stopped making me sleep. I thought about buying NyQuil, but that can get expensive.

So how did I beat insomnia? I bought a FitBit earlier this year, and it has an alarm on it that vibrates to wake you up. I decided to start using it, so I would set the alarm for 8am. The first couple of days I would wake up and 8am, but press the button and go back to sleep. Then I decided to get up at 8am, but by 10am I was sleepy again, so I would take a nap. I tried staying awake as long as I could, and try as I might I would still fall asleep after noon around 1pm or 2pm. I tried my best to stay awake, so when I would find myself drifting off to sleep, I would sit up and drink something cold and get up and walk around. Sometimes I would get in the shower because washing your body usually wakes you up.

It might have taken me 2 weeks to finally get to the point where even though the alarm is set for 8am, I wake up at 6am. Of course I try to go back to sleep and wake up at 8, but there are days where I’m so awake that I just can’t possibly go back to sleep, so I just get up. Now when I’m watching my shows at night, I’ll start drifting off to sleep at like 9 or 10pm and I’m asleep all night until 6 or 8am. No more sleeping pills.

We have a new doctor who is Hindu and he told me I could try meditation and I have tried meditation in the past, but I’ve gotten to the point where it just puts me to sleep. I mean like during the day. I think trying to meditate at night when you are trying to fall asleep is a great idea, but I don’t need to meditate to fall asleep anymore since my body has gotten used to calling it a day by 9pm. So I don’t need medication, nor do I need meditation to sleep.

It’s a wonderful feeling when you are able to fall asleep at a decent hour, despite the fact that I don’t have a job to go to in the morning.

Schwinn Meridian 3-Wheel Tricycle

trike with 4 locks

I wanted to ride my new Schwinn Meridian 3-wheel tricycle to the store. I bought it a month ago and it’s been sitting in our back yard ever since. I haven’t been allowed to ride it because my partner is afraid I will hurt my leg, or perhaps get into another accident and break something else. I insisted on going to the store on the trike because I wanted to buy him a anniversary gift, and I really wanted to ride it. It’s like giving a child a cookie, but saying you can’t eat it, although in this case, I bought it and I’m being told I can’t ride it. He isn’t wrong for worrying because I’ve broken 2 bones so far on my bike.

The new Schwinn Meridian 3-wheel tricycle is very difficult to ride at first. I was on the right side of the street and I was quickly heading towards the sidewalk. I thought I was going straight, and in fact I held the handlebars like I was going straight, but for some reason I was actually going to the right. I had to quickly hit the brakes before I hit the sidewalk and the back of a car. That thing stops on a dime. I mean, literally, I squeezed the handlebars and it stopped so fast that I nearly fell off. I did actually, but I landed on both feet, thank goodness. I discovered that I have to veer to the left to go straight, which makes me think the handlebars aren’t on right, but they are. I even triple checked, and they are on straight.

I think that it will take time to learn the quirks of that bike so I will be comfortable enough to ride it when I need/want to. I reassured my partner that I won’t be riding that bike as fast as I normally would ride my old bike. I said I wouldn’t be racing, and he said YOU’VE BEEN RACING? I laughed and said no, I mean I won’t be going 10-12mph, instead I’ll go slow like 7 or 8 mph like an old man. When I cross streets I will walk it instead of riding it, which you are supposed to do anyway. I’ll also only ride it in residential neighborhoods instead of busy streets. Even streets with a bike lane have cars parked in them, so I end up with a very tiny amount of road. I prefer neighborhoods anyway.

I won’t be going to the gym until April 15th, so I still have a few weeks to heal, even though the doctor told me I was completely healed. I really look forward to going to the gym, even though I’m terrified to go on any bike now. I guess if I fear breaking another bone in my body, then I will be even more careful than I normally am, and so I shouldn’t worry about it. My commitment to Planet Fitness ends in September, that is if they didn’t add those months that I had my account frozen, if that’s the case then probably December. I really hope I make a big difference and lose a lot of weight by then.

Did you notice the picture above? I took a picture of it after I put all the locks on it when I got to the store. There is the U shaped lock that attaches to the handicapped sign with the steel coil attached to the front wheel. Then of course a coil cable attached from the seat to the frame, that way I don’t have to worry about someone stealing my seat. Trust me, it’s an issue lol. Then 2 more coiled cables attached to each back wheel. You think it’s paranoia, but if you think that, you’ve never come back to your bike minus a wheel or the seat. It happens more than you think. Trust me, it’s happened to me.

Fitbit Sleep

fitbit sleepI was diagnosed with Sleep Apnea in 2005. I visited 2 different aunts from 2002 to 2004 and they both told me that I snored really loud and that I gasped for air. In the summer of 2005 I was waking up in the middle of the night really gasping for air, I mean like I was struggling to breathe like someone had their hands around my neck and was choking me to death. I went to a sleep study and they told me I had severe sleep apnea and prescribed a BiPap machine.

I wore the BiPap machine mask every night for a decade, until I lost 70lbs and the pressure was too much and I couldn’t use it anymore. I didn’t think I had any sleeping issues with it, but I was wrong. I think I just didn’t want to continue to use it because I was sick and tired of having to be tethered to a machine for the rest of my life. Can you imagine not being able to go to bed unless you have a ball and chain locked to your ankle? That’s what it feels like. But in all fairness, if I don’t have that ball and chain locked on my face (in this case) I could likely die.

My mother died in her sleep from a heart attack and she was obese and I remember how bad her snoring was when she was alive. The doctor at the sleep study told me that I could die from a stroke or a heart attack in my sleep if I don’t have a BiPap macine. I believe that if I never went to that sleep study, I wouldn’t be here right now blogging about this.

I just bought a Fitbit Charge HR from Amazon to help motivate me to exercise more often so I can lose weight, and I knew it tracked my sleep, but I wasn’t as motivated by that until this very moment. When I saw my sleep from yesterday, I wasn’t that shocked by my sleeping patterns. It says that it took me 8 minutes to fall asleep, I woke up 6 times, I was restless 7 times and I was awake/restless for 30 minutes and I was only asleep for 6 hours and 6 minutes. The reason is because I set the alarm to wake me up at 8am. I want to wake up earlier than I do because I am trying to change my sleeping habits. I really hate sleeping so late. But then I went back to sleep because my body really needed it. I only slept for 1 hour and 48 minutes, but I was awake 4 times, I was restless 4 times and I was awake/restless for 27 minutes, which is basically half the time I was asleep.

Last night I decided to do an experiment and use my BiPap machine. I have gained half of the weight back that I lost, so I’m getting back into that zone where I really should start using the machine again. The air pressure wasn’t too high, it was the way it was when I was first diagnosed with sleep apnea, so that right there tells me I really need to be wearing my mask again every night. So last night I slept for 9 hours and 13 minutes which tells me I am catching up on much needed sleep. I only woke up 1 time, I was only restless 4 times and I was awake/restless for 8 minutes the whole night. What a huge difference a BiPap machine makes.

This Fitbit watch has really made a difference in my life in just owning it for 2 days. Not only will it help me (hopefully) lose weight, but it helped me to realize that I need to get more sleep and I need to use my BiPap machine every night, which I am going to do.

Fitbit Charge HR

Fitbit Charge HRIt finally happened. I was finally able to buy a Fitbit Charge HR. I bought the extra large because I didn’t trust that the large one would fit my fat wrist lol. I also didn’t trust that the band on the large would keep it on. I prefer a regular watch band.

I wanted to buy something like this a couple of years ago, but these are so expensive, and I just didn’t have the money. I bought The Spark from SparkPeople, which is a great product, but it’s glitchy. When I am riding my bike, it logs it as “General exercise” which means if I really burn like say 300 calories, it logs it as 94 or something. I don’t like that. I also didn’t like that it didn’t work with the bluetooth to connect to my phone, and this does.

When I lost 70lbs a couple of years ago, I used the Noom app, and to tell the truth I’ve been using it ever since, I just haven’t lost any weight because once my motivation goes away, I don’t lose weight, so whatever I am using doesn’t do any good. I have a new gadget, and I have some motivation to lose weight again, so I really hope I get my moneys worth with this new watch lol.

Of course I won’t be able to put it to good use for another month. My gym membership is frozen until April 15th, so on that date I will ride my new Schwinn Meridian 3-wheel tricycle to Planet Fitness. The physical therapist said I can use the exercise bike and the elliptical machine and to do some of the exercises I did at Physical Therapy. Until then, I will use the Fitbit watch and the Fitbit app to track my sleep and my steps and log my food. I’ve already walked 3,070 steps since I got it this morning. It wants me to walk 10,000 steps per day, and I’ve already walked a quarter of that so far. The day isn’t over.

I was going to wait until next month to buy it, but I was just dying to have it now. I’m impatient lol.

Physical Therapy

physical therapy

I have been going to physical therapy for my leg for probably a month and a couple of weeks. I went every Monday, Wednesday and Friday at 1pm. They gave me several exercises with balls and straps and a giant piece of rubber, which they gave me on my first day so I could do those exercises at home twice a day. When I saw the doctor, I asked about riding the stationary bike at PT and she said that I could, so they added that. They decided that I was ready to start putting pressure on my leg, so they told me to stop using the crutches and start using a cane, which I did.

The best part of going to Physical Therapy were the other patients, because they had 6 beds in a row, plus they had 6 chairs all in the same room that they called the gym room. Everyone came at the same time, so everyone started to get to know each other well enough that we all knew each others names, like Cheers. Every Monday we would discuss The Walking Dead since it came back, which was so awesome, because it gave us something to talk about.

Unfortunately, my medical insurance provider capped me (no they didn’t bust a cap lol) and so Monday was my last day. I’m pretty sure I am good now and that if I wanted to continue my therapy, I could, at home, but it was a fun routine and it was fun getting out of the house and having other people to talk to, you know? It gets boring just laying in bed or sitting on the edge of the bed playing video games. It’s fun to actually get out of the house and meet new people.

I have the tools at the house, and I know what exercises I should do, so I am pretty much set to continue my therapy on my own, but it would be nice to have more therapy. I think they should call it physical and mental therapy. Maybe the doctor will prescribe another couple of weeks for me, who knows.

Predicting the Weather

When I broke my arm a couple of years ago, my aunt told me that I might be able to predict when it rains because it will suddenly start to hurt where the bone broke. Well, that never happened. Today I had such awful pain in my leg where the screws are in my bone and I started to wonder if I was walking too much.

I took the dog outside and saw a neighbor named Pal. He asked how my leg was doing and I told him it was fine until today, and that it’s been hurting really bad. He told me that he broke his leg a couple decades ago and he has 3 screws and a pin. He said there are certain molecules in the air that just before it rains, it acts like a magnet and gravitates to your screws and gives you a headache like pain in your bone where the screws are. He told me that it will be like that until cartilage grows around the screws, which could take a couple or few years.

So that’s not good news lol. I mean, it would be nice to be warned that it’s going to rain just before I go to the gym on the trike, because if I’m having pain in my leg, then I won’t go. Other than the gym, I don’t see how this is going to help me if it just causes me headache like pain in my leg bone. It just sounds like a nightmare to me lol.

I’m all for having super powers, but couldn’t I have the power to heal rather than having the power to be in agony? It just seems unfair. Like my life isn’t bad enough, now I have to walk with a limp and scream in pain when it rains? Gee, thanks.

Ahead of Schedule

The surgeon who operated on my leg told me on January 28th that I could put pressure on my leg in 6 to 8 weeks. Last Friday, Paul, my physical therapist told me that he thinks I’m ready to start putting pressure on my leg now, and that he would like to see me using a cane instead of crutches. I’ve been using a cane since I came home that day, and have been using a cane ever since. I’m supposed to start putting pressure on my leg in 2 – 4 weeks, but I’m doing it now.

Of course I’m not jumping up and down or walking all over town, I’m just walking to the bathroom or the kitchen. We went to Dollar General Market a couple nights ago and I did just fine, except for when my partner kept stopping to look at labels, or to look a greeting cards. Every time I had to stop and wait, it put pressure on my good leg to keep me upright, which really hurt. I could have put pressure on both legs, but I didn’t want to put too much pressure on my bad leg.

I’m excited because I wasn’t expecting to be able to walk for another 2 to 4 weeks. It doesn’t hurt as much as I thought it would, but I do feel pressure on the top of my bone at the knee. I can feel the pressure from the metal plate (or rod?) and screws when I wiggle my toes. It’s a strange feeling, but I’ll get used to it, I’m sure.

I haven’t gone out on my new tricycle yet because I’m afraid I might have an accident if I go out this soon. I’m having issues with the fenders, because they feel like they are too close to the tires. The back fender is a little bent from shipping. I am also having trouble turning right, which isn’t that big of an issue because I will get used to it, and my body will get used to how odd it is and it will compensate, but for now I’m just a little afraid. I’d like to take it to the grocery store on a test run soon. I still need to buy more chains and locks to chain the seat to the frame and another U shaped lock to lock the frame to the handicapped sign pole. I would love to buy one with an alarm, but they cost a lot of money.

The one thing I am happy about is that I am no longer bed ridden. I actually have freedom again. I can go to the kitchen on my own with my cup and get my own drinks. I can make meals, do dishes and laundry and I can feed the cats outside again. It still takes me forever to get anywhere, but at least I get there, and that’s all that matters to me.

Back to a Normal Life. Sort of.

Walking_Cane

Yesterday I put my new Schwinn adult tricycle together by myself in the kitchen, which meant that I had to put pressure on my bad leg as I walked around the bike. I told my physical therapist what I did, and that last night I really paid for it because I was in a lot of pain. He told me I was in pain because my leg isn’t used to it, but he said that I’m ready to start putting pressure on it, even though I’m 2-4 weeks early according to my doctor. But I agree with him about being ready because it doesn’t hurt at all to stand only on my right leg. I actually did that at physical therapy with both hands ready to grab something if it hurt, and I didn’t feel any pain. I was more surprised than one of the girls that work there.

One of the therapists showed me the proper way to use a cane. Yes, there is a proper way, I did not know that. I thought I would use my right hand and extend the cane on the same side as my bad leg. I was half right. I have to use my left hand, and I extend the cane and extend my right leg at the same time. So it’s good to know. I used a cane when I came out of the hospital when I had pneumonia only because I felt dizzy. I didn’t have a specific leg that I had to use the cane with, so I just used it to keep my balance.

We happened to have a cane in the car, so when I was on ice in PT, I called my partner and asked him to bring the cane to me, and he did. I walked out with a cane and holding my crutches and the other patients were shocked that I was walking without my crutches. We see each other every Monday, Wednesday and Friday at the same time, so we’ve all become friendly and all know each others names heh. It’s like Cheers.

When we came home, I figured since I can start walking with a cane, it will be so much easier to start doing chores around the house again, like doing the dishes, taking out the dog, doing laundry etc. I took the dog out during The Ellen Show and I was fine. I just did the dishes the other day so we don’t really have that many dishes to do, so I’ll wait until tonight after dinner because I plan on making dinner tonight. I’m so sick of ham sandwiches for dinner lol. Oh, speaking of laundry, we put some clothes in the washer before going to PT and there are towels in the dryer that I have to fold, so I think I’m going to get started. My life has to start getting back to normal some time, it might as well start today.

2 Months

It has been 2 months since I broke my leg and had surgery. The picture on the left was taken last month  on 1/20/2016 and the one on the right was just taken on 2/18/2016. I wanted to show how it’s healing.

My leg still hurts from time to time if I twist my leg at the knee, but that’s about it. My partner was giving them to me every 4 hours like clockwork for the first month because he didn’t want me to be in any pain, which I appreciate. After so much time had passed, I guess he just forgot to give me the pills unless I asked for one. But that’s a good thing because I should only be taking them when I actually need them. They are so expensive that I’d rather only take them when I actually need them.

I go to Physical Therapy 3 days a week and that has helped a lot. I went to Physical Therapy at a place only a block away on the same street a couple of years ago for my back when I found out that I had scoliosis, and I didn’t like going there. I’m HIV+ and they didn’t want me to be in the open room with the rest of their clients, so they put me in a room by myself, which was very awkward because I had to ring a bell when I was done with my exercises and wait for the guy to come give me the tool for the next exercise. I didn’t tell this place that I am HIV+ because it’s not relevant. I’m not going to bleed or ejaculate on anything, so there’s no reason for them to fear me. That other place told me that they want to put me in a room by myself because they don’t want me to catch a cold from one of the other clients, but I’ve been going to PT at this new place for at least a month and I haven’t gotten since yet, and yes, there have been clients who were sick and I never caught their cold.

My doctor told me that I can put pressure on it in between the middle of March until the beginning of April. I wonder if I will replace the crutches with a cane by then. I sure do hope so. I am so sick of crutches. I will blog about that when that time comes.