WHY???

1.  I want to know why the doctors refuse to give me the medication that works the best for my panic disorder here, yet others seem to get it prescribed and turn around and sell it!  It pisses me off!  Alprozolam/Xanax is the absolute best medication for my panic disorder.  I was on that for over 10 years and that medication stops the attacks while also allowing me to feel completely NORMAL.  I Had tried many different medication, most that did not work at all.  I was originally put on Xanax down here back in 1995. When I moved back here, I was told they couldn’t give me that anymore.  They tried Klonopin, but that made me feel drunk and I don’t drink.  They put me on Ativan/Lorazapam.  This medication helps, but takes an hour to work at all and causes me to feel even more tired.  Xanax was made for someone just like me.  I was told that Xanax has a high abuse level and that is why they wouldn’t give it to me.  Let me tell you, I have NEVER abused medication, I have NEVER sold my medication and I have NEVER even shared my medication!!!  So, I am not allowed to be on the one medication that helps the most and allows me to feel normal.  WTF…

2.  Why is it that doctors never seem to give enough medication to actually cover the massive pain you live with every day of your life?  For the last 7 years I have been living with major intractable pain, that gets worse every damn year.  It took 6 years to just get on a medication that actually does help some.  After trying several different non-opioid medications that caused me to be severely depressed or suicidal or swell so bad I couldn’t walk at all.  Now the CDC is going after opioid medication like a steak dangling before a starved dog.  They are putting doctors in jail whose only crime was prescribing life saving opioids to patients in horrible pain.  The patients that are able to get up and go to work only because they have opioid medication to help them accomplish it.   The CDC wants ALL opioid medication gone by 2019.  That’s right, even the ones used in the hospital after surgery!  They are saying that we have an opioid crisis and people are dying.  The problem is they are grouping all the drug addicts that die from heroin and street drugs in the same group as chronic pain patients, because heroin is an opioid.  So what this does is take away the life saving medication from real pain patients.  Now these patients can no longer get up and go to work. Several have already taken their own lives, because the pain (untreated) is more than they can endure.  Many states here in the USA have adopted the CDC guidelines as rules and they have taken all the opioids away from the chronic pain patients there, or at the very least they have cut the medication way down.  This terrifies me, because if or when this happens to me, I will be one of the ones that is forced to just end my life.  Yes, you are going to see a massive increase in suicides over the next two years.  Just do a search online for “opioid crisis”. You will see the many things that the CDC has already started.  

3.  Why am I constantly being punished for being poor?  I worked for years and made very good money.  It is NOT my fault that I became disabled or that my ex-husband chose to walk out on me while I was recovering from  two major surgeries that saved my life.  Yet, every time I turn around, I am being punished for being poor!   If I had money, I would be able to pay the $100 for the Neurobehavioral Exam I need in order to obtain the Spinal Cord Stimulator, which may very well help with my constant intractable pain.  If I had money, I could get much better treatment and the best medications.  If I had money, I could afford to eat healthy, which would most likely help me on many levels.  But I don’t have money.  I struggle every month just to survive.  Let me break it down for you in my monthly bills and income: Mortgage-$482, Electric (budget billing) $158, Gas (budget billing) $42, Water-$90, RX copays-$30 = $802.00. My income per month is $813.00. That leaves me with $11.00 a month to buy toilet paper, personal hygiene items, etc.  I receive $200 a month in Foodstamps to replenish food items I need (like sugar,flour & condiments) and buy food to feed me for the entire month.  This is very difficult to do, so in order to have food to eat every day, I have to pick the cheapest options.  These are also the NOT good for you options.  My vehicle quit running two years ago and I don’t have money to have it fixed, plus I don’t have funds to pay for insurance or gas anyway.  My gas range (stove/oven) quit working over a year ago, again I do not have funds to have it fixed or buy a new one.  The dryer is on its way out as well.  Yes, I have tried everywhere here for any kind of help and there is none!  

Ok, that’s enough, I am feeling extremely depressed now………….

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That’s It, I Am Done…

My pain doctor said I had to get a letter from my other doctor that prescribes my anxiety medication in order to continue to get my pain meds.  The letter needs to state why I need to take the medication and that there are no other alternatives.  I am disabled with Panic Disorder and Agoraphobia, that alone should state why I need the medication.  For 22 years I have fought the panic with agoraphobia cycles.  Today, my other doctor told me that he won’t do the letter, because it will make him liable if I die.  After I explained repeatedly and cried telling him I have already been through every medication out there over the last two decades and I am on the only one that even slightly helps, he still refused.  Now my anxiety medication has been taken away and I am given antihistamines.  I already know this road.  First I will withdrawal which is horrible and then the antihistamines will make me tired and increase my major depression.  So by doing this, the doctor has now greatly increased the chance that I will end my own life…

I cannot deal with anymore crap.  I am already struggling to survive and barely able to leave my home for appointments.  My sister tells me I eat too much bad food and I will be just fine if I eat healthy.  Hey guess what, I have $200 a month to get what the household needs and feed myself.  I can’t stand long to really cook much either.  All she did was make me feel even crappier and more depressed.  I don’t know why I keep reaching out to my siblings, it is never supportive or loving.  I have three siblings still alive.  Not one of them can even comprehend what I deal with, since they have not ever gone through any of my demons.  They have never had panic or agoraphobia or depression or chronic pain, etc.  I read that people can survive even cancer when they have a good support system.  Guess what….. I don’t have a support system at all…

I am exhausted, warn out, too damn tired!  I can’t even see right from all the stress, panic, anxiety (yes, panic and anxiety are two completely different things) and crying today.  I have fought hard and long to survive, now it is time for me to rest!  I so long for eternal peace.  I mentally and physically cannot do another thing.  I feel drunk, yet I don’t drink.  That is what all of this has done to me just today.  I give up!  I shall sleep while I can, because sleep will be fleeting without my medication………….

8 days Post-Op of 2nd Surgery…

Today is day 8 of my post-op for the large abdominal surgery to fix all the complications from my radical hysterectomy. Yesterday was a bad pain day, but today I am doing pretty good. The pain changes like the wave of the tide. You can feel pretty good and then, wham, your hurting like nobodies business!

Yesterday I took a shower. After a major surgery, taking a shower wipes you out completely and increases pain levels. This seems to go on for weeks. You have to only plan on taking a shower and then a nap.

Today, my pain has been much better. I don’t have my incision screaming at me like it did yesterday. The catheter is still a huge problem. My entire abdominal muscles wrench up tight through out the day. Sometime while I urinate and sometimes I don’t urinate. The doctor called in a medication that is supposed to help that and turns your pee orange. Actually it’s an orange red color. The problem is, I am still wrenching up. Not as often, but it is still happening. I did, however, get seven hours of sleep last night, so the medication must be helping out some. My catheter bag was filled to the top when I woke at 7:30. I among supposed to lift anything and when that bag is full it is super heavy. Luckily, my mom was right there to carry it into the bathroom for me and dump it. It hurts up in my pee hole all the time. I think my body wrenches up because it is trying to get the damn thing out of me.

The Drain is still painful and I still get stabbing pains deep inside me where it is. It should come out tomorrow at my doctors visit though so that will all stop then. They are also removing my staples. I am going to beg for the catheter to be removed. Tomorrow is 9 days and that is plenty of time for allowing my bladder to rest from the surgery where they had to fix the hole in the ureter and reattach it to my bladder. The longer a catheter is in, the harder it is for you to pee on your own. He said I had to keep it in 1-2 weeks. My incision is very large, it goes a good 4-5″ past my belly button, but it looks very good. So far anyone who sees it is shocked at how big it is. No one has seen an incision this big. My doctor said he needed a lot of room to work and repair everything. They had to manipulate my intestines and clean out all the infection in my abdomen. That scares me, because that is what had to be done to my son when his appendix ruptured and he ended up with scarring on his intestines that would periodically cause blockages and he would be in a ton of pain, go to the ER and end up with an NG tube. I now understand why he hated that tube so much and said he was never having it again. It royally sucks!

I have had major swelling my in my legs and feet. I sleep with my legs propped up and I still have a ton of swelling. The doctor called in two doses of lasix to help expel all the fluid. I took one dose today. I take the other dose tomorrow. Hopefully the swelling will go down. It started on Saturday. They said I have the swelling because they had to pump a ton of fluids in me in the OR to bring my levels up. I was right at needing a blood transfusion. Then they also put a lot of fluid in me cleaning out the infection. Never in my life have I bruised easy or bled a lot, but ever since the hysterectomy surgery I have been anemic and bruise easy and bleed a lot. The doctor keeps saying I had to of been this way before, but is never was. I have some nasty looking bruises on my arms from I don’t know what. I just want to heal and be back to normal! Since I woke today my left hand has been numb and tingly.

I am 7 weeks post-op now from my first surgery. I should be pretty much back to normal, but nothing was right after the hysterectomy. I bled a lot out of my vagina and you normally just spot. This last surgery they closed the hole in my vaginally cuff and I am just spotting like I should of done to begin with. I am on HysterSisters site and everyone who had a hysterectomy in the same time frame as me posts under the same area. Everyone is back to mostly normal. One person had a few UTI’s during recovery and I am the only one who had all kinds of problems. It took my doctor way to long to find all the issues I had going on too. I basically had to tell him that I felt like I was peeing out of my vagina for him to find that I had a hole in my ureter, which most likely happened during my surgery and cause all the other problems, because it was not caught and treated quickly. Ugh… Makes me so mad, but I am trying not to keep dwelling all that negative crap.

I get up around 7am everyday and sit, take my meds and then occupy my mind with email and games for a while, usually two hours. Then I walk around the house slowly and then I have to lay back down with my legs propped up. Every few hours I walk around the house slowly and the lay back down. Often I fall asleep for an hour when I lay down. After major surgery the first 1-2 weeks you sleep a lot. This is my life right now. For 6-8 weeks I cannot do a single thing. Only walk out to the dinner table to eat, lay in bed or sit for a bit. I don’t know what I am going to do when my mom goes home. She is taking me to the doctor tomorrow and I imagine she will not stay here past this coming weekend. She has been here since last Wednesday. She takes care of everything for me. She even makes sure my catheter bag does back up with all the fluid coming out of me from swelling. No one else here would do that. No one even checks on me here. I want to go home with her, but I have a scan next week and another scan the following week and back to the doctor the day after that. I know she is bored out of her mind sitting around here all the time. Normally she golfs and does all kinds of stuff at home. My parents live in a huge and very nice retirement community in Florida called the Villages.

I need to go lay back down in bed, though I really don’t want too, but my feet are blown up like balloons. Guess I will take a nap took………….

Surgery Tomorrow…

Tomorrow is six weeks from my radical hysterectomy surgery. This last week my bowels finally began to work normally, every day. Due to complication, I will be back in the operating room tomorrow for a big abdominal surgery to repair a hole in my ureter, clean out a hematoma and close the hole in my vaginal cuff. This time I will have a large incision in my abdomen and that is what has me scared! Another 6-8 weeks of recovery, but this time with a large incision and more pain.

I have prepared myself as much as I possibly can for this surgery, yet my nerves are a mess. I am to be at the hospital at 11:30am and the surgery is scheduled for 1:00pm. I have been reassured that everyone is on the same page this time and I will be well cared for with good pain control. So I continue to pray that this is the case and all goes well and I heal with no other issues.

Today I can only consume clear liquids while I do a bowel prep. I have to end the night with an enema and I have to shower twice today with special soap that I scrub into my belly for five minutes. I also have to do this in the morning before I go to the hospital. My blood work is good, so that is reassuring.

I thought I was nervous before my radical hysterectomy with the robot, this is much much more intense. Just so you know, if you ever have surgeries with a robot or laproscopically, don’t worry about horrible pain. The worse I ever had from those were a couple of days of gas pains in my shoulders from the gas they blow up the belly with to see. This time it is the large incision that has me so concerned. I keep telling myself so many others have had it done and made it through just fine. The key is keeping relaxed!

After surgery I will have two days of an epidural to help get me through the first two days that tend to be the hardest pain. In this time I will be focusing on breathing deeply to keep my lungs clear. This prevents pneumonia! I also cannot have anything by mouth these two days, only through IV. When they remove the epidural and start me on oral meds, I will keep calm and get up and walk to get my blood flowing and help me heal! Support my incision with a pillow and be very gentle with it, as to not cause any further trauma to the area. It is extremely important to baby the incision area and the abdominal muscles for a full 6-8 weeks. If you are not careful you can cause a hernia which will result in another surgery and I am not having any more surgeries!

A hysterectomy is normally a very easy surgery to heal from. I just happened to be one of the very few that had something go wrong. What went wrong was not my surgeon, but the staff in recovery who left me in too much pain and did not give me anxiety medications. I went into a full blown panic attack which ripped the stitches inside my abdomen and caused the large hematoma, which caused the hole in my ureter and the hole in my
vaginal cuff. To think tomorrow I would be six weeks out from that surgery and being released from restriction and feeling back to normal. Ugh!

So, here I am today. Trying to keep calm. Get through this day and stick to my well thought out plan for recovery. I am beyond blessed to have my mother coming up to be with me on Wednesday and care for me while I am on strict bed rest with just a few short walking sessions a day for 1-2 weeks. Today I get to eat jello, broth and Popsicles…..lol!

Please, send up prayers and positive thoughts for a speedy healing and a perfect surgery………….

Even More B.S….

I went to see my doctor today at 10:00am. I had double checked when they called me earlier in the week and changed my appointment to today that is was today and at 10:00 and at the cancer center. Yes, they told me!

I arrived ten minutes early, at check in they can’t find me anywhere, even though I have been there several times, then discover I am not scheduled there. So I told her repeatedly about the girl calling me and changing my day and time. I had to sit for 30 minutes while a nurse tried to figure out what was going on. She tells me she can’t figure out who called me, but I am to go to my doctors other office at Augusta Oncology Associates (AOA).

So we drive over there and I sit for a half hour, then get called back, sit another half hour and have a intern taking my info that they have already taken every time I have ever been there, sit for another 20 minutes then get told to undress for a vaginal exam, sit for another 20 minutes waiting on the doctor to come in. I have the doctor, his 2nd in charge doctor and the intern all looking up my vagina. I told them they were going to have to start buying me dinner since they all crowd around and peer into my darkness. No laughs with that either! I notice the look on his 2nds face and heard her say to the doctor, is that _____________. He does an internal finger exam and I notice he feels something and says yes. I asked what it was but he refused to tell me until I was dressed and he came back in. So there I waited another half hour for him to come back in my room, completely stressed out!

The look on his face was not good. He said the stent that was put into my right ureter from kidney down to bladder had some how moved and was now in my abdomen and they could see and feel it through the hole in the vaginal cuff. He sends me over to the hospital to have a CT scan with contrast and tells me he will call me as soon as the results are in.

I go to the hospital and sit for two damn hours waiting to be called back. Finally I get an IV put in my arm, then sit another 15 minutes and I am called back. I get on the table and they scan me three times, then inject the contrast into my IV, which always gives me a hot weird taste in the back of my mouth and makes my crotch area very hot. Then they scan me two more times. Then I had to lay there for 15 minutes and they scanned me two more times and I was finally done. I left my house this morning at 9:30am and got home at 3:30pm.

I immediately called my mother and was telling her everything, when the other line beeped in and I said it might be the doctor so hold on. I click over and it is a lady from the other hospital here called University. She says she has me down for 8:00am surgery tomorrow. I said what surgery. She asked if I saw my doctor today and I said yes, what surgery. She asked what the doctor told me and I replied that he saw the stent on the other side of my vaginal cuff. She said, yes! Have you not talked to your doctor since? I said no that I was waiting for his call and again asked what surgery. She refused to tell me and said she would call them and have him call me back. There I sat, stressed in worry for over an hour and my doctors assistant called me. She said that I was NOT having surgery in the morning, but I was having surgery on another day. I asked what surgery and she said she did not know, but my doctor wanted me back in his office tomorrow at 11:45 to go over everything,

The only thing I can figure he would be doing surgery for is to repair the hole in the ureter and get the stent out of my abdomen. It is rushing urine into my abdomen which then runs out the hole in my cuff and I soak a depends every hour now. I don’t think it needs to wait until after the weekend though. I am terrified of having a large incision and the pain of it after. From what I have found, they go in either in your back or your side and it’s a decent sized cut, then they repair the hole. You can end up being in the hospital two weeks and usually are put on a pain pump so you know they expect a lot of pain! Yikes…. You have got to be kidding me! You are also on a catheter for at least a week. EKE…

How in the hell does a stent come out of the ureter and end up in your abdomen. Stents come out sometimes but it is always out through your urethra. I have been unable to find anyone else this has happened to, let alone anyone else that had both a hole in the cuff and a hole in the ureter after a hysterectomy and I also had sepsis and a hematoma that would not come out even through a drain. I almost died then. I do not want to deal with this. Everyone keeps telling me I need to talk to a lawyer because all of it together is just too damn much. I can’t deal with that right now, I have to get better first, but I am thinking about it. I feel I definitely deserve some type of compensation for the many errors on his part that caused me so much pain, suffering and inability to even do a single thing for months. I don’t know though, dealing with that will cause all kinds of anxiety issues for me. Though the money is desperately needed.

I really cannot take anymore bad news. I have had three surgeries before the hysterectomy and never had any problems with them at all. Healed well and no mishaps! My doctor is raved about being the best here by everyone. He never had any error or mishap before me. Why is it always me that the crap happens too anyway?

PLEASE PRAY FOR ME. FOR NO PAIN, FAST HEALING AND RECOVERY AND FOR IT ALL TO BE OVER WITH………….

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UGH…….

I have had the stent in since last Friday. The stent itself doesn’t bother me much but I have had some sharp bladder pains. I see the doctor tomorrow morning.

Last night I woke every hour to chunks of the hematoma coming out of me and having to go to the bathroom and change the Depends underwear I have to wear. I also had a lot of fluid and blood coming out from midnight until noon and went through six depends that fast. I feel like I can’t mentally take any of this anymore. I have had re major crying spells feeling like I have no life and I am going to snap, which must be due to hormones.

I am 30 days post OP for a radical Hysterectomy which then I got ill and ended up hospitalized and then found out I have a hole in my vaginal cuff, a serious infection and a hole in my right ureter. Enough is enough and I need to see some improvements! I have zero life. Rest and take it easy. Bored to death and sick of this damn house. I have gotten an appetite back in the last two days though and actually had a BM two days in a row, for the first time since my surgery.

I am on two antibiotics and one of them leaves a nasty taste in my mouth all the time. I finish them on Saturday, which will be two weeks of taking them. I am sick of it all damn it!

I will ask the doctor about hormones tomorrow too. I need more than anything for the stuff flowing out of me to slow down and stop. Living in Depends underwear for women since Tuesday July 15th has gotten to me! Not getting much sleep has gotten to me! Having pain in my bladder and very low back has really gotten to me! It feels like everything crappy that can happen, always happens to me. If I could go back I would not have this surgery and just live the rest of my life in the pain.

I do everything I can to keep my mind busy. I read, email, Facebook and play two different games on my IPad. I watch TV or movies. It’s just been too long with no improvements. It’s bad enough to deal with depressed and anxiety and chronic pain every day of your life, then all of this has just been way more than I can take. I have been tortured so many times between the surgery and being left in pain until I had a full blown panic attack to the drain tube being out I my low abdomen while conscious and then the tube put in my back and then taken out and a stent put in! I’m done! Something has to give…

Every time I lay down I do a healing meditation and I focus on the three major areas. The hematoma to get out of me, the hole in my ureter to heal and the hole in my vaginal cuff to heal. None of which can heal as long as fluid is constantly flowing out of it! I am terrified of having to have another surgery too! Please, send me prayer for healing and recovery, I need them so badly………….

I was in the Hospital again…

So, after two days of leaking out watery blood that was smelling horrible I called the office again, this time they told me to go to the ER. This was on Thursday. I went in to the ER and my BP was very low, blood in my urine, hemoglobin very low and high platelets. The called my doctor in and his 2nd came to the ER. I do not like this women! She did a pelvic exam, finally, she pulled out chunks of stuff and cleaned around inside and it HURT! She said there is a hole in my vaginal cuff and proceeded to say I had to of put something in there, when I did NOT! The stuff coming out of me is an infection and the hole in the cuff was letting it come out of me, which was good in a way. They made me drink contrast for two hours and then a CT scan. Scan showed also an infection abscess in my lower left abdomen, where it has hurt me since surgery. I was admitted to the hospital and started on IV antibiotics plus and oral antibiotic. My left urethra line goes right through this abscess too.

The hospital here sucks! I swear they try to kill you. They wouldn’t give me my regular pain meds so I had to have someone bring them to me. I was sick as hell and couldn’t sleep. They said they couldn’t understand how I could be walking and talking and not have a high fever. My BP remained very low the entire time in the hospital and they were giving me my blood pressure meds! Idiots! They made me sicker!

They wanted to put a drain into my abscess but the machine broke down so I had to wait until the next day. Machine was still down so I had to drink contrast for two hours again and get another CT. The abscess was still the same. I waited a couple of hours and they finally got the machine up to do the drain. They inserted a line into the abscess and it felt like they were scraping me inside. They could not get much out of the drain but hooked up the suction bulb and told me to make sure it keeps suction by opening the valve and squeezing then closing the valve. I wanted to go home and they said I could after the drain, but then they were freaking out about my blood levels being so low so I had to wait for more blood work. I would have to get a blood transfusion if it did not improve at all. My hemoglobin was 6.8 and the blood work came back with it up a little to 7.2 so they finally let me go home Saturday. I felt horrible there and I just knew if I stayed any longer they would of killed me.

I am still leaking fluid out of me and they said it would be two weeks. So two weeks of depends! Sucks! I still have blood in my urine. The horrible smell from the stuff coming out of me went away though. I take one antibiotic three times a day and another one once a day. I feel better being home and on all of my medications. I guess the infection is very bad and will take time to get better. They said I could of died easily. Why do I keep having so much crap happen to me?

The drain site is extremely tender and sore. Only about an 1″ of the abscess fluid has Come up in the drain so far since it was put in Saturday. The fluid is very thick like jelly and blood colored. I see the doctor on Wednesday and hopefully the drain will get to come out then. I need this all to heal and get better so I can get better. I can’t wait to be past it all and it will be just a memory!

If I could go back I would never have the surgery. It was supposed to help me with all the pain I am in and all it did was make shit worse and about killed me. I don’t know if the doctor screwed up and caused this or I just get to be the lucky 1% that crap happens too. Please, if you read this, send up some prayers for me to heal and get better………….