When I hit the big four oh, I found that my body started to fall apart one piece at a time. My warranty had expired and there was No Extended Warranty available! This is the story of my struggle to keep it all together using spare parts and baling twine.
Showing posts with label duragesic pain patch. Show all posts
Showing posts with label duragesic pain patch. Show all posts
My crop circle of hives/freckles on my nose is very shiney and noticable today. I feel like the end of my nose is HUGE. I am extremely tired, extremely sad, extremely irritated, extremely itchy, extremely ouchy. I want to go to bed, but I can't sleep. What's worse I forgot to fill my pain medication (duragesice patch 25 mcg/hr) before coming home and I won't be able to purchase the refills until tomorrow morning.
I will try and take some benedryl soon and see if it does double duty as a sleep inducer and as a hive reducer. More hives are popping up as I am typing. It's been that kind of week/month/year for me.
My pain is increasing as the medication slowly leaves my system. The Belly AND The Legs AND The Headache. Hoping some of the other meds take part of the load. I have too much to do tomorrow to worry about how bad I will be hurting. Just hoping I won't have physical withdrawal. On top of this I am running a fever and am nauseated, so feel very sick all over. Blech!
An interesting day at work, a frustrating and upsetting day otherwise. Hoping my spirit bounces back as I have excised as many outside irritants out of my life as I can today. I am trying to simplify what I can and block out what I can't tolerate and get down to where I only have to worry about the basics of life. I am hardly able to handle that!
I used to say my life was like living in a lower apartment and waiting for the next shoe to drop and my upstairs neighbor had a bigger shoe obsession than Imelda Marcos (I guess you have to be my age to understand THAT joke). One problem gets solved, three more jump up to get in line to be next. Big Sigh!
I haven't been blogging much this month because my Mom has been taking a lot of my attention and energy. She had her gallbladder removed laproscopically a week ago today. Seven huge gallstones were stuck in it AND it had adhered itself by all its edges to her liver because of adhesions from her colon resection a few years ago. One other issue solved by the operation - her constant runny nose seems to be gone. Wonder if gallstones can make your nose run??
Mom is 81 years old, and did not bounce back from this operation very quickly. Her blood pressure was too low for her to receive pain medication for hours after the surgery so she and I stayed the night at the hospital. I told the nurse at about 6:30 PM that I was uncomfortable taking her home in too much pain and so far away from the hospital. Mom was feeling better about one or two in the morning, and I was feeling worse. I am way past the age where I can comfortably sleep on two chairs pushed together! The Legs and The Belly and The Headache were determined to keep me awake, in addition my back needed a right angle in the middle of it to make me fit in those chairs! I stayed with Mom, determined to keep her oriented as to where she was and what was happening, and helping with technology like call lights and cell phones.
We made it home Friday afternoon, and it took Mom until Wednesday morning to feel close to normal again. I finally had to make her walk walk walk to get all her innards to work again. Even with pain medication I am sure it hurt, and I hated to do it, but things were not progressing because she just wanted to sleep and not move. After walking and drinking lots of liquids she started feeling better. Today she was as grumpy as could be, a sure sign of improvement. Unfortunately she was also grumpy Saturday Sunday Monday Tuesday and Wednesday!!! But grumpy is improving both in the frequency of the complaints and the substance of what she is complaining about, so I am glad she is grumpy. Next week we return to see the surgeon and then on another day go to see the vascular surgeon about the aortic aneurysm.
More ill health has hit members of the family since I last wrote. We have absolutely no luck in health related issues. I am wishing the tide is turning and better health and more energy are coming our way!
I saw my PCP today, and he is increasing my fentanyl patch from 12 mcg/hr to 25 mcg/hr. This is because I am still having significant pelvic, leg, lower back, and abdominal pain not to mention break through pain from The Headache. I was asked what parts of my body are working OK, and I put my hands at my eyebrow level and said from here up I'm at 100%, everything else is toast. Got a laugh but I really wasn't kidding!
I was able to wander into work today, and actually felt useful. I was able to help several co-workers with some problems and work with a client on what they need to do to set up and bill for new services at their location. Healthcare is never easy. Something you would think is simple is extremely complicated, and something normally complicated in any other type of business is generally almost insurmountably terrible and mixed up with state and federal regulations that are unbelievable.
Other countries do not have this hopelessly convoluted system we have developed here in order to capture cost and get reimbursement for services. I don't think healthcare reform will ever touch this either, as there are entire industries devoted to special areas of healthcare management and reimbursement. I guess its good that my company is very flexible - an advantage to being small, it is very nimble and able to make large changes very quickly. It is one of the things I truly love about how they/we work!
Thinking of work, I am praying that the increased duragesic (fentanyl) dosage will allow me more pain free hours and increased functionality. My PCP said today what I had already figured out - pain relief is not going to change the physical problems like weakness and leg cramps and foot cramps (I didn't know how far my feet could curl downwards until I started having these about a year ago - OUCH!) and inability to stand/walk for long distances or periods of times. Big Sigh again.
I go on April 9th to see Dr. House at Washington University in St. Louis to see if there is any unknown metabolic or other bizarre lurking illness to blame for my leg problems. I told my PCP I am not quite sure what I am going to see Dr. House for because all I can get is bad news or worse news, there is no possiblity left in my mind for good news. Just another shoe dropping from my overhead neighbor to anticipate!
Hoping you have all had good days since I last looked. I will try to get caught up on my reading in the next couple of days - I feel so disconnected. I have just not had the energy or the will to do much in the last week. Hoping for better things next week and the week after!
Went to work today for a half day. Yeah!!! I would have had MORE than four hours work but it took me over two hours to drive my normal 45 minute commute. I would drive a couple of interstate exits, and then I would have to pull off and sleep, then drive a couple more, and then pull off and sleep. Not entirely safe, although I felt I was able to judge the amount of sleepiness (I have had this problem before) and quit driving as soon as sleepy thoughts were crossing my mind. Going home I did not have this problem. Hoping tomorrow will be better.
My mom refuses to go to the doctor and she feels fine today so convincing her is even harder. I give up. I will wait for another time or other symptoms and see if I can get her to go THEN. Arghhh!
We had our weekly television viewing of Antiques Roadshow this evening. I don't know what we find so fascinating about that show, but it is the one television program we all enjoy watching. It is much more interesting to watch it in a group for some reason. We discuss different objects and comment about them like "I don't care how much that is worth, I wouldn't have it in my house" as if we have the type of home where you hang $100,000 paintings over the fireplace.
The duragesic patches are here to stay unless I have some drastic side effect that I can't anticipate. I know that the patch is part of my sleepytime problem. One of my bosses suggested I try working from home using Skype. Hadn't thought of that. Hoping my internet service stays up reliably so I can give this a try. My pain levels are up tonight but that is after three days in a row of increased activity, so bring it on I say! I'm so glad to get out and do something productive today.
Am hoping for two days in a row for getting to work. I'll be WooHoo'ing big time if I get that done tomorrow!
Today is rare disease day, and The Mastocytosis Society put together a really good video of what it means to have a rare disease, particularily Mastocytosis and mast cell disorders. I seem to have more than my share of strange, rare or unusual diseases so I am celebrating today as a good day to be alive!
The Patch I have a picture of the duragesic patch. It is tiny. I have some tegaderm patches I am putting over it to help hold it on, as the first one wanted to pop off (I think because it is so small). I tried also securing the tegaderm ends with some paper tape that is supposed to be hypoallergenic but I had to take it off as I started breaking out everywhere it touched.
It is amazing that this little bitty drug delivery system is helping me so much. It doesn't appear that it could hold enough medication to make a difference. Another benefit for me is this drug bypasses my defective digestive system entirely. I can't throw it up, or have it pass on through without digesting.
I have slept the night through the last couple of nights. I haven't been able to just lay down and sleep since I don't know when. Hoping I can get caught up on my sleep deprivation reservoir and be able to have some stamina again.
The Headache just seems to be ignoring the duragesic medication. It is still marching on with it's worse every three or four days pattern BUT the medication is not making it more severe than it generally is. WooHoo!
The Belly seems to like the pain relief very much. My shortness of breath has stopped, as has my rapid heartbeat. My blood pressure has dropped, not back to it's normal 110/70 but at least out of the stratosphere where strokes happen. My hives are a little better because I am not constantly aggravating them with pain medication they didn't like. The itchiness is there but is much less than it was with dilaudid. So far, the duragesic patch has been a winner.
I still have significant pain (probably why my blood pressure is still not normal) but I have stopped the kind of hurt I could not fight against. I did not have the willpower or strength left to push myself time and time again into the lavapit of pain that physical activity has become.
I am hoping that this relief will continue, and maybe this year I can actually put out flowers and a garden and maybe go swimming a few times. Last year I had dropped even these few pleasurable activities I had left because of pain issues. I hope I can increase hours at work, and dare I say it, travel again?? I had to give up going to church several years ago, and before that I had to give up the nursing home ministry I participated in. I would love to get some of that passion back in my daily life also.
A grey Missouri winter day, not too cold, and not too warm. A good day for trying to do some house work...I hope I will be able to sweep and mop the floors and dust the furniture. Not too much to ask of my body.
Hope you all have a great Sunday and a fantastic next week!
Had a great day today. The pain has been in the background, but I have been able to function much better today than I have in months and months.
I was able to cook lunch, go to the pharmacy, shop for groceries, put up the groceries, cook supper. This doesn't seem like much to most people but to do all those things in succession without having to rest for hours is something I have not been able to do for a long time. I am not even too physically tired tonight.
I wonder how much uncontrolled pain has cost me in energy and functionality over the last few years. I had to get to the almost non-functional point to realize that I needed to treat this seriously. I am almost floating with happiness at being able to function almost at a normal level. WooHoo!!
Hoping you all have a great day, and pain stays away in whatever form it manifests itself in. I am more than a little tired and the neurontin makes me really loopy for a while after taking it since I have been using the duragesic patch, so I hope this post makes sense and my spelling is not too bad.
Things are looking up a little for my family members who were having health issues so I very much appreciate the thoughts and prayers. Someone somewhere must have heard! Many hard days and nights left for them but any improvement in very ill persons is great!!! Hope you all have a beautiful morning tomorrow!
I have started on my second duragesic patch. I think I am finally becoming physically accustomed to this. Not sure why my eyesight is so problematic but I think it must be related to my very very high blood pressure going down. Most of the day I have suffered from a lack of depth perception. I tried twice to drive, once to the gas station about three miles from home, and it was not a great success. I decided to not put everyone elses' lives in danger by me driving on autopilot 45 miles to work. I think the curbs are thanking me, as I ran up on a couple at the gas station.
I did drive over to my sister's house this evening and we had a pleasant meal and watched a show on television with her and my brother in law. This has been a harrowing week in many ways for our family healthwise and since some of the problems are not mine to share just please keep us in your thoughts and prayers. We all enjoyed an evening where for a few moments we could relax and forget all our problems.
My mother has not been weathering all the stress (not related to me and my multiple issues - these are old hat for us!) well. I was glad to get her out of the house (and yes we took all our house doggies with us to play with my sister's puppy Gracie) to just wind down, have some tea, and chit chat.
With me out of commission much of this week, it seemed like the timing for other problems just stank. I guess there is no good time for bad news but if I was feeling well and mobile I guess I would have felt like I was more capable of helping. My mind has just been floating along most of the week. I think I have been typing some things I am not sure even make sense. Uh Oh, I just realized you might not be able to tell the difference between that and my regular writing!! Sigh.
I do think the duragesic patches are going to be a keeper. I'll let my PCP know Monday as he was concerned because of my uncontrolled pain. It seems to be semi almost (but not quite) controlled now - plus today The Headache went back to sleep instead of getting worse yet again. WooHoo!
Double Vision I think the pain control has stabilized with the duragesic patch, and I no longer navigate by lurching throughout the house. Today the problem has been double vision. Increase your screen magnification to the max and wear two peir of glasses to sorta see kind of double vision.
The nausea is off and on not very good, but the overall pain levels have gone from an eight to a six, which is huge for me. My PCP wants it down to a four but I don't think I want to try stronger patches just yet. I am thinking that I may be able to increase the neurontin again since the duragesic is slowing my digestion down a bit. I may give it a try this weekend.
I was super emotional yesterday, and almost chipper part of the day today. Rollercoaster emotions from this stuff - not used to mood swings like this. I didn't try to get to work. I spent a good part of the day sleeping again, but the nerve pain woke me up this evening so I am waiting for it to calm down again before I try to go back to sleep. The Belly is hurting too but hoping maybe everything will calm down at once. Sigh.
I'm ready to wake up tomorrow as close to normal as I can get. Tomorrow will be better! WooHoo!
Did not go to work today - tried driving but my coordination was not good. I did not feel right driving 45 miles when I was having a hard time driving just down the road. Then I slept for several hours, waking up with The Headache hurting quite a bit this evening.
I am quite nauseous. I am not vomitting which is a plus, but wondering if it is the duragesic building up in my system. I tried taking phenergan and a couple of tylenol and changing the programs on my occipital stimulator to help with the nausea and The Headache. The Legs and the pelvic pain is a little better under control which is a plus, but kinda hard this evening to think about eating anything. Glad the pills are staying down!
The shortness of breath is gone, so I guess my PCP was correct - it was from the systemic issues that come from being in severe pain. Just not sure how I am ever going to be able to balance The Headache against pain relief for nerve pain and stomach pain. Wishing life was just a tad bit less complicated.
I will try again tomorrow to get around and get myself to work. Hoping this calms down tonight, the nausea is a little better since taking the phenergan but The Headache is not cooperating. I'm ready for this merrygoround to stop and I can get on with my life.
Started my day with no pain meds in my system. I kept my specialist appointment (actually saw their PA [endocrinology])and the meds were in at the pharmacy when I got there after the appointment. The pain was godawfully horrid by then so I was glad to get the patches and relieved they are cheap.
The patches are tiny - about an inch long by a half inch wide. I also bought some tape/tegaderm to hold in it place since you wear it for three days. I took phenergan before putting the patch on my shoulder. I was glad I did because I got a chemical taste in my mouth and some dizzy feeling nausea. As the day went on I noticed these side effects less and less. No vomiting no hives so I am pleased.
The pain relief is not as good as a full dose of the dilaudid but I don't have the side effects either. It seems to take enough of the edge off so I can function. The pain has been so overwhelming that I have had great difficulty getting dressed or moving. The Headache seems to be tolerating it so far, and The Belly has calmed down a bit. Hoping this is the med that does the trick in stomping out the nerve pain.
A secret fear I have is one shared by anyone who has had cancer: what if this is cancer related pain? It seems so awful and unremitting that I find it hard to believe that there is not some dreadful disease process ongoing. I guess I will find out more answers when I see Dr. House in April.
Hoping that tomorrow the patch works as well as it did today. I feel confident I will be able to drive into work. Yeah!!!
