Tag: Medication

Side Effects….again.

On By WendyIn Chronic Illness18 Comments
medication-safety
image source

I’m happy to say, for the most part, I’m doing well; but I’m having a heck of a time with side effects from one of my medications.

Normally I don’t mention the names of medications I’m having troubles with, but feel this would get confusing if I don’t use their names this time.  Please remember that medication side effects hit different people differently.  Some will have no side effects, others will be allergic.  Be smart about your medications.  Keep up with your side effects and discuss them with your doctor.

I’ll start from the beginning of this tale.

Last year my psychiatrist put me on Latuda for Bipolar Depression and it worked very well.  I was very impressed.  However, in January when I had to pay over $1000 every month for Latuda until my deductible with my insurance was met.  I decided to try a new medication.

Enter Geodon.  My psychiatrist had seen similar results from Geodon as with Latuda, so we decided to give it a try.  It didn’t help my moods as much, but I wasn’t on a high dose.  Then the muscle spasms started.  My back started hurting so much.  I could not get comfortable.  This can be a side effect of Geodon.  At this point I had met my deductible so I went back on Latuda.  I was sure all would be fine then, but it wasn’t.

It took me a while to understand what was happening to me.  I simply could not sit still.  It got worse, not only could I not sit still, I felt the need to pace.  I would pace the house.  I would exercise throughout the day.  I just had to keep moving.  It was driving me crazy.  I had a lot going on this past month so it was difficult for me to figure out it was Latuda causing my problems.  I just never suspected it, I didn’t have side effects when I was on it before, but evidently when you go back on a medication it can produce new side effects.  Finally I decided to look up the side effects for every medication I am on.  I wasn’t even going to check Latuda because I had no side effects before, but I decided to look them up.  One of the first side effects listed that you need to discuss with your doctor is restlessness.  I hate it was my beloved Latuda, but glad we figured it out.  I really have been going crazy.  Having to move all the time is overwhelming.

I told my psychiatrist how I was so restless and how it gets worse within 30 minutes of taking Latuda.  She said, “shit”.  She’s a really cool doctor, she was just saying what I was feeling.  Aw Shit!  Now what?  We decided to add a drug (Cogentin) that will help with the side effects instead of taking away the Latuda at this point.  Latuda has helped my depression so much, I hate risking my mental health by changing antidepressants, but I also hate taking a medication to stop the side effects of another drug.  Not a good place to be in right now.  I’ve decided to try the Cogentin for a while.  I may decide to change antidepressants in the future.  If the Cogentin doesn’t work, I’ll be going off of the Latuda if I want to or not.

I started the Cogentin yesterday and I have to say, I feel much more calm.  I’m a little antsy, but I’m not pacing.  I can sit still for a bit at least.  I hope it keeps on working and works even better.

20170319_134834
photo by w. holcombe

I had to drastically cut down on my knitting because my back was hurting pretty bad.  Today I’m able to knit more.  That’s a huge improvement.

I’ll close today with a short list of things I’m grateful for right now…..

I’m so grateful that most everything with my health is doing well.  I haven’t had a flare in quite some time, even though I pushed myself too hard recently.  I’m grateful that I have such a great psychiatrist, who listens and is willing to help me find the best solution.  I’m grateful that is seems the Cogentin is working.  I’m grateful I have friends I can reach out to when I’m not feeling my best and they “get it”.  I’m grateful for my blogging family.  I’m grateful I can knit again!

and….I’m grateful for you.

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Oh Poop! Side effects are they worth it?

On By WendyIn Chronic Illness20 Comments
image from clipartfest.com

On January 25th I wrote about A Visit to the Migraine Doctor, in it I mentioned that my doctor was putting me on a new drug.  Diamox.  I haven’t been tolerating this medication very well.  I haven’t been posting as much as usual, because of some of the side effects.

After being put on this medication I started having extreme GI distress.  I had acid reflux, nausea, and diarrhea.  These became increasingly worse.  The acid reflux and nausea made it impossible to get a good night’s sleep.  The diarrhea was worse, there were times I didn’t make it to the bathroom.  I had no warning.  As I started a new diet about the time I was put on Diamox I thought the GI distress was caused by the diet.  I was wrong.  I ceased the diet and still the GI distress continued.

My cognitive dysfunction has been much worse than normal.  This is the main reason I haven’t been writing.  I just haven’t been able to think straight enough to process my thoughts.

image from http://www.aids.gov

There are times you have to decide if a medication’s benefits out weigh the side effects, as this medication did not reduce my headaches (if anything they have been worse) I’d say it’s not worth it.  So I’m officially off this medication now.  I don’t know how long it will take for me to get back in the grove of things here, but I’m happy things are getting back to my normal.

There are medications that cause minor side effects and I’ve decided to stay on them because they were helping more than the side effects were causing me trouble.  For example, Topamax changed my taste of certain foods.  This was minor when it helped my headaches.  (Unfortunately it isn’t helping my headaches like it used to, so we are working hard to find a new one that does.)

Until we can find a new drug that helps my headaches I’m stuck.  When I have a migraine, which is most of the time, I can’t think straight.  When I was on Diamox my thinking was even more muddled.  Now that I’m off it, I hope some of my cognitive function is returning.  I always have a bit of cognition problems due to Migraines and Meniere’s.  Speaking of cognitive disfunction, I am having a hard time writing this post.  I keep reading it over and over and forget what I just read.  I’ve been trying hard to keep up with other’s blogs but my memory is not working as it should, so I’m not absorbing the information a lot of the time.  I’m confused.  I can’t think straight, even more than normal.  I stopped Diamox a couple of weeks ago, I’m feeling much better, but my brain is still catching up, I think.

You must decide for yourself if the side effects of a medication is worth the benefits.  Of course, this drug was not worth it, as it didn’t have any benefits.  However, even if it had been beneficial I feel the side effects would not have been worth it.  Trade less migraines for extreme GI issues and brain fog?  I can’t do it.

Are there medications you are having side effects from but you still feel it’s worth taking?

Have you stopped a drug because of side effects even if it helps?

 

A visit to the Migraine Doctor

On By WendyIn Chronic Illness, Headaches, Migraines16 Comments
headache
ocular migraine, by w. holcombe

You may recall from my last visit to the migraine doc  (a neurologist who specializes in headaches) that she’s tried just about everything and suggested that I look into studies.  Well, she hasn’t given up.

I saw her last week and it was a long visit.  I am always impressed when I go there that she never seems to be in a hurry.  I never feel like she is rushed to get to the next patient.  It’s amazing really, this is a doctor who is backed up over 3 months for an appointment, you know she’s busy.  During our visit, I was having slow vertigo, which made it difficult for me to follow everything she was saying.  I’m still asking Stuart some things, unfortunately he doesn’t seem to have much of a memory.  He must have been worried about me.  I did understand most of the visit, there are just little things I remember her saying that I wish I remembered.  Like she said that Melatonin was good for something other than sleep, but we can’t remember what…….well I just looked it up and it can help with a bunch of things, including migraines.  Who knew?  I don’t know if that’s what she said, but I’ll keep taking it.  It helps fall asleep anyway.

She is concerned that some of my migraines may be caused because my CSF (Cerebrospinal Fluid) is too high again.  I have fluctuating CSF, it tends to run high.  The migraine medications that I’m on help keep it lowered.  She felt that we need to put me on a drug that will increase this effect.  So I was taken off Topamax and put on Diamox.  I’ve been on Diamox  before, my CSF pressure did not remain stable on it either, we’ll see what happens this time.

She did look in my eyes, it was difficult because I had a bit of nystagmus going on at the time so my eyes were jumping, but she saw that it was bulging a little bit back there, a sure sign that my pressure is up.

The weird things is, if I have high CSF I should have a worse headache when I lie down.  Sometimes I have a bad headache when I wake up but often I don’t.  When I have a bad headache, it doesn’t get better when I lie down.  hmmmm.  Makes me wonder.  But then there’s the eye thing, she did say it was a slight bulge.  Well I’m just not convinced and I don’t want this drug to make my pressure go too low.  It’s a very strong diuretic.  I’m peeing a lot, but my body will get used to it I’m sure.  I’m a little more light headed, but that could just be me, but it could be the drug.   I feel very confused, this one has bothered me a lot, but it says it will go away shortly.  If it doesn’t I won’t be on this drug long.  I do not like being so forgetful.   I was angry at Stuart yesterday and couldn’t remember why!!  I don’t get angry at him often, you’d think I’d remember why I was mad at him.  I think this drug is making me grumpy, or maybe that’s just me.  I also think it’s reducing my appetite, as least that would be a good thing.

To sum up, I’m on a new drug (or back on an old drug).  I’m not sure about it.  I’m keeping an open mind though.  I’m keeping a journal of my headaches as always, I’m adding in other side effects I’m feeling and paying close attention to all.  I go back to the migraine doc in 2 months.

I can only say: Chronic migraines and New Daily Persistent Headaches suck.

Have you tried? Do you think ___ caused it?

On By WendyIn Chronic Illness, Mental Health14 Comments
butterfly color
Butterfly, by w. holcombe

Hello.  My name is Wendy.  I just turned 53 years old and I have chronic illnesses, including Meniere’s Disease.  Unless something amazing happens, they are not going to go away.  Sometimes I feel I need to make this statement before anyone speaks to me.

Recently I was asked a few things about my health.  This was not by people who see me often, or have much knowledge about my illnesses.  This is how I handled a few of the questions, some of it was good, some not so good.

Have you tried yoga?  It can really help your balance.  I used to do yoga regularly until the Meniere’s Disease got so bad and I ended up on my face during a class.  It can only help your balance if you have some to start with!  After having a disease ruin your balance system, yoga isn’t possible.  (ok, this may have been a bit harsh, and some people with Meniere’s may get some help from yoga, I don’t know.  However, anyone as advanced as I am, who has been through Vestibular Therapy and still has balance issues all the time, cannot do yoga.  And if you have had a disease the compromises your balance for as long as I have, do you not think I would have heard about YOGA by now?)  

I heard about these positions you can get in that will make vertigo go away.  Why can’t you just do that?  There are maneuvers you can do to help certain types of vertigo.  However, there are numerous causes for vertigo and what causes mine can not be helped by those maneuvers. (do people think my doctors would just let me suffer  this much if it was so simple to “cure” my vertigo?)

Do you think this could have been caused by all the drugs back when you were younger?  Okay, this one caught me off guard.  I thought, what the heck is she talking about?  I may have experimented a little when I was younger, but she wouldn’t have known that.  I must have looked shocked and said, “nooooo?”  She then explained, “All those psychiatric drugs they put you on.”  I was shocked.  How could someone think that the treatment I received for my mental illness caused me to get chronically ill?  I’m sure I looked shocked when I answered, “No.”  “Well I was thinking….”  I stopped and said, “I know many people with Meniere’s disease and really we have nothing in common except some of us have relatives with the same disease.  They have no idea what causes this.”  “That’s good to hear, I’ve been so worried about it.”  “Well there is no need to worry about that.  The medication I’ve taken for my Bipolar did not cause me to get ill.”   AHHH!

This last question has continued to plague me.  Is this one of the reasons people do not seek help for their mental illness, they are afraid of what side effects the medications may cause?

I have Bipolar I disorder.  I take medication for it.  I also try to keep a good sleep schedule, eat well, keep my stress controlled, and see a therapist…there is a lot more to taking care of yourself  when you have a mental illness than just taking your medication.

I have never been afraid of taking my medication.  Each time my medication is changed my doctor and I talk about it.  We discuss exactly what it is supposed to do, any side effects, if it will react with any other medications I’m on at the time, and if the side effects are worth it.  I don’t just take a medication not knowing what it will do to me.  No one should do that.  If your doctor does not automatically discuss these things with you make sure you ask BEFORE you fill your prescription and start taking a medication you are not familiar with.  I also advise you to read the information the pharmacist gives you about your new medication just in case your doctor forgot something.  It happens, doctors are human too.

I have decided to take a medication even though I knew there was a chance it could cause damage to my thyroid.  It did.  I now have to be on medication for hypothyroidism.  Am I upset that the medication caused this side effect.  No.  I went into this with my eyes wide open.  At the time there were very few medications to treat Bipolar I and I decided the pay off from the drug was worth the side effect that it may cause.  I’m still happy I decided to take that medication and have those years as a stable person.  Truthfully, I would take it again today if that was the only medication that would keep me stable.

I would hate to think that people would not seek out treatment for any illness because they are afraid of the side effects of the medication they might be put on.  Become informed.  Know what the medications will do.  Know how it will help you and the side effects it may cause, you decide if it is the right medication for you.

Many of you may be thinking that there are times that a certain side effect is unknown.  You are right.  There are many stories of someone who took a medication and had a severe reaction.  There are stories of people taking a medication and years later they find out that it hurt them in ways they never knew it could.   These stories are not typical.  We simply can’t live in fear and not be treated because of the “what ifs”.

I can tell you, if I hadn’t been treated for my Bipolar for all these years, my life would be totally different, and not in a good way.  I can almost tell you for certainty that I would not be alive to write this post.  I will never regret taking the medications that helped save my life.

 

Chronic Pain/Illness Photography Project

On By WendyIn Chronic Illness12 Comments

Starting on April 26th, I’ve been participating in a Chronic Pain/Illness Photography Project on Facebook.  It is a closed group, but I wanted to share my photos here.  By the way, if anyone wants to join the group, you can enter at any time.  You can complete the previous projects if you would like, or you can start of where we are now.  So far, it’s been a lot of fun, and a lot of support and camaraderie between between people who “get it”.

Many of these photos my long time readers may have seen.  Some are photos of my artwork.  (I can’t really get out and create many new photos right now since I’m recovering from hip replacement surgery.)

Day 1 – Hope

I made this for one of my doctors. She gives a lot of people hope. Unfortunately her treatment didn’t help me for long, but I always have hope, not necessarily for a cure…..Hope springs eternal.

Hope... for Dr. Gray by w. holcombe copywrite 2014
Hope… for Dr. Gray
by w. holcombe copywrite 2014

Day 2 – Loss

This photo represents losing my hearing, and much of my balance due to one of my illnesses, Meniere’s Disease.

 Fractured Ear manipulated photo - by w. holcombe

Fractured Ear
manipulated photo –
by w. holcombe

Day 3…Today.

Today I got my bandage off from my hip replacement, all looks good there! You can’t tell in the picture, but I have 6 stitches you can see, but mostly I’ve been glued together, it looks pretty cool.
I haven’t felt good today. The nerve in my back is acting up and my leg is in a lot of pain. I didn’t sleep much last night.
My monkey is guarding my hip that was just operated on so my dog or cat can sit on my lap. In this photo, Kiki is keeping me company. We rescued Kiki right when my hip/back started hurting. The doctors thought I’d just strained it when we moved. I had no idea I’d be hip replacement surgery just 7 months later because my femur head was collapsing because it was dying. Avascular Necrosis sucks. and mine was caused because of over use of prednisone. Doctors caused this disease by treating other diseases I have with too many steroids. If I’m lucky it won’t attack my other large joints. I’m 51, in the last 3 years, I’ve gotten 2 artificial ears (Cochlear Implants) and an artificial hip….no metal detectors for me!! haha.

I’m not complaining, honestly….it’s just the way it is.

and when my hip heals I’ll be able to walk!!
Woo Hoo!!

Wendy Hip Replacement Recovery - April 2015 photos by w holcombe
Wendy Hip Replacement Recovery – April 2015
photos by w holcombe
Day 4 – Self Portrait.
This looks a little depressing, but I’m not..not today. I just like this self portrait of me. I took the photo in the bathroom mirror, and manipulated it on Photoshop. It shows part of my cochlear implant.
Some days are better than others….this day was a rough day. Taking the photo helped me get part of those feeling out, and helped me explain them to others.
I still have a hard time with my cochlear implants at the time. My hearing isn’t supposed to fluctuate with them, but it does…a lot! I’m lost, often. People don’t understand why I can’t hear when I have these devices. For those who don’t know, when someone has a hearing aid or other hearing device, it does NOT allow you to hear like a normal person. We often miss a lot. Often HOH/Deaf people won’t tell you they are having a hard time hearing.
I speak up, but it’s amazing how many hearing people don’t hear me. 🙂
Wendy charcoalwithCI
Wendy with CI – manipulated photo  –                     by w holcombe

Day 5…Tool Kit.

(sorry I’m a day late, yesterday I had a 12 hour vertigo attack…yuck….happy I wasn’t alone, and the violent spinning didn’t last long, I spent most of the time in slow spins…it’s still miserable, but it could have been much worse!) I have a few tool kits, emergency kits…..I believe in being prepared. smile emoticon This is my medication kit.
Top left – all closed up and ready to go. Top right – top part is open, this is where we store my shots and things that are needed for that, and other little things. Plus my med list, with all meds I take listed, pharmacy, prescribing doctor…ect. I also have this list with me in my wallet too. (this includes supplements and everything) Bottom left – bottom part of container is open and top of pill bottles showing…..the “A”s stand for A.M. or Morning, “P” is P.M. or Evening, AP are pills to be taken in the Morning and Evening. If there is a number on the top then I take more than one. I line all of these up and fill up my pill boxes…you can see those on top of my medicine box Bottom Left. I have two morning boxes because I have to take 2 pills before breakfast and the rest after breakfast.

There’s more to keeping up with my meds, but that’s my medicine box. If I’m going out of town for more than a couple of days, I just grab my box. It really has helped me to stay on track, and know when I need to refill my meds, to buy more supplements….ect. It also helps me keep everything in one place. I love my medication kit.
So this is ONE of my tool kits.

medicine box
Medication Toolkit photos – by w. holcombe

Day 6….Acceptance.

One day after hearing me talk about how hard I had been fighting, a fellow Meniere’s patient told me that perhaps I should learn to walk with old Mr. Meniere’s instead of fighting him so much all the time. I had never even thought of that. I knew this disease had no cure, but it never occurred to me to not fight it tooth and nail. Suddenly it hit me, I had to accept it as part of me. I can’t get rid of it, some days may be better, but it will always be there. I accepted it. Once I did, things got much easier. I have a number of other illnesses, I’ve accepted them all. Meniere’s Disease was the hardest to accept….it comes packed with a lot of stuff….and mine is a very complicated case. (my doctors at Duke now say I have “more than Meniere’s”, they have no idea exactly what I have. I have a several complicated vestibular disorders.)

I drew this little doodle one day to show I think I’m perfect just the way I am.

I am (imperfectly) perfect - by w. holcombe
I am (imperfectly) perfect – by w. holcombe

Day 7 – Grieving:

This was a hard subject for me to figure out a photo for. I kept thinking of things more suited for loss. I wanted to show something that worked more for my grief over all the things I’ve lost…. I came across this entry in my journal, and a photo of a flower I took that I think work fairly well.

Here are the words on the journal page, I’m sure you can’t read them….
The tears have been shed.
The lines have been drawn.
Do we dare to cross.
Do we dare to dream again.
The tears have flowed line rivers down our face.
The mourning continues.
How do we hope again.
How do we believe?

journal entry w. holcombe
journal entry
w. holcombe
by w holcombe
by w holcombe

I hope you enjoyed my photo journey so far….you may have learned a little about me along the way.

There are more to come!

Remember, if you would like to join me in this photography journey, come join the Facebook group, there’s a great group of people putting out some great work.

The Bipolar Cocktail – when the mixture isn’t right…

On By WendyIn Bipolar35 Comments

Medication_cocktail_by_LaChixMany illnesses are treated with a cocktail of medications, Bipolar type 1 is not different.  For me, I must have a mood stabilizer, an antidepressant, an anxiolytic (anti-anxiety drug), and….I can’t remember if there is anything else.  I think that’s it.  Right now the mood stabilizer is working.  The antidepressant isn’t working, and the anxiolytic is trying hard to work but I have a lot of reason to be anxious.  (that’s what my therapist told me on Thursday anyway).   Of course, you could say I have a lot to be depressed about too, but I don’t normally let depression take over my life.  I’m fighting hard to keep telling myself, “This will get better.”, but it has been a bit overwhelming lately.

The tears, so many tears have fallen.  The words, “I’m sorry.” have passed my lips so many times I’ve begun to wonder if I can finish a conversation without saying it.  I’ve been told by professionals that I don’t “wallow”.  Oh if they could see me some nights, they might just change their minds.

Recently I completely lost control.  In a complete panic! I needed to leave.  I needed to get away from my husband before I hurt him any longer.  I know I’ve become such a burden, I’m not a fun person, I’m worthless, and useless.  I wish this wonderful, caring man had never met me.

How could I leave?  I can’t drive.  Where would I go?  I have no money.  What could I do?  The only answer.   Take the dark lady’s hand, I hear her promises to make it all better.  To help my husband.  To end the pain for both of us.  I reach out….and suddenly I stop!  NO!  This is my illness talking!  It will get better.  My husband loves me, and if I leave with her, he would be devastated.  I can’t hurt him.  “NO! my  lady I will not leave with you.  I’m stronger than you!” … at least for now.

I knew my resolve was weak.  I knew I couldn’t trust myself.  I grabbed my computer.  I searched and searched….I needed an inpatient hospital.  Somewhere I could go for just a little while.  Somewhere I could be made to not listen to the dark lady beckoning to me with empty promises.  I found a listing, I hit on it…..Site Not Found….What???  I went to the next place on the list…it wasn’t an inpatient facility…the next, same thing….again…again!  I threw my computer!

I was so livid!  And so…..I don’t know….I really don’t remember what happened immediately after that.   I know I ended up getting in the bath, (for those who regularly read my blog you will know how odd this is for me, I’ve become quite phobic of the bath due to my vertigo, but in the bath I was.) and my husband joined me.  He held me, and we just laid back in the water.  I talked, he could only listen.  (I can’t wear my cochlear implants in the tub, so even if he talked I wouldn’t have known.)  I cried, he held on tighter.  I told him everything.  He knew most of it already.  He did witness it.   When we got out of the bath, and readied for bed, I gathered all my medications and gave them to him.  I took out 3 pills that I might need during the night, knowing that even if I took the 3 together I would not cause myself harm.  I told him to lock them away, until I was better.  Only giving me the medications as I needed them.   (this happened a few days ago)

My cocktail will be remixed on Wednesday.  It will take a while to know if this mixture is working.  Until then, I will be cautious.  I’m still crying a lot.  The words “I’m sorry” are continuously spewing from my mouth.  I not only feel sad, angry, lost and riddled with panic….I feel sick.  My body feels as if it is fighting off an invader.  I keep running a low-grade fever, on and off.  I am hot….I am cold.  My head, throat, all of me hurts.   I had one of the worst asthma attacks I’ve had….ever…yesterday.  It scared me….suffocation is terrifying.   Once I knew my rescue inhaler was not going to work, we rushed to get the nebulizer up and running.  Luckily, I began to feel relief very quickly.  A trip to the ER was narrowly avoided.

Yes, I have an emergency plan in place now for my deepest levels of depression.  Of course, I have my husband watching my behavior.  I have all my medications that could harm me locked away to be given out only at specified times.  We have the address and phone number of an emergency psychiatric hospital.   At times I am thinking clearly.  Other times I feel so engulfed by the depths of depression I cannot imagine a way out, it feels as if I’ve stepped in a tar pit and it is constantly trying to pull me under.  I have to keep my mantra in my head….”I know it will get better.”   I’ve had problems with my medications before, I KNOW THIS WILL GET BETTER!

“Ow! Ow! Ow!”

On By WendyIn Chronic Illness15 Comments

I was awakened, after being asleep less than 2 hours, by hearing the words: “Ow!, Ow!. Ow!”.  Imagine my surprise when I realized the words were coming out of my own mouth.  Suddenly I realized just how much pain I was in.  My head was at an odd angle and my neck was screaming with pain, my head was throbbing, and my stomach and bladder were causing extreme discomfort.  As I hobbled to the bathroom I found the words, “Ow!….” continuing to come from my mouth.   (Funny thing, I can’t really hear me say it, but when I woke up it really did sound as if the words were coming from outside my body….strange how deafness works sometimes.)

I stretched my neck and put ice on it and it felt much better, my head was also starting to ease some.  The pain in my bladder and stomach were a different story.  My stomach literally felt like it was being eaten from the inside out.  Over production of acid is not a pleasant feeling.  I tried to eat a little something to calm the pain down, I took extra medication for my acid reflux, but it takes time to work.  I’ve never had it so bad before, I could not touch my stomach without it causing more pain.  I would love to have been able to take Maalox, it was always my go-to fix when my stomach was acting like this, but unfortunately I haven’t been able to find Maalox or any medication like it that I can take, they all have something that will cause my fructose malabsorption to attack.  I’m happy to report after a couple of days of a pretty bland diet, and extra acid reflux medication, my stomach is once again pain free…..for now.  I do try hard to not eat anything that will cause excess acid production, and I don’t think I did eat anything offending before this, however, stress can also cause excess acid production, and the pain from my bladder was causing me much stress.

When I first saw the doctor here I was having pain in my bladder and she tested my urine and found nothing, I have an irritable bladder and we decided it was just spasming.  So when this pain started I thought it may be the same.  Unfortunately, this pain kept getting worse and worse.  Every time I moved it hurt.  Sitting was very painful, so was walking.  I’m sure everyone who’s ever had a UTI will also know that I was having to go more than usual, but couldn’t urinate once I got in the bathroom…and it was very painful.  All of this started on Sunday, the 3rd, I had just finished my antibiotics and steroids for the bronchitis 2 days before.  I couldn’t believe I had an infection again. I upped my already large amount of water I drink, trying hard to flush things out.  By Thursday, the 7th, I was convinced it wasn’t irritable bladder talking, something was wrong.  So off to see the doctor again.  Unfortunately, the doctor I’ve seen before is out on medical leave. (I hope she is alright, I mentioned before that she had pneumonia last month, so I’m a bit concerned.)  I saw another doctor in the office.  Not someone I really want to see again  I felt like he talked down to me, as if I was not able to understand things.  Stuart thinks I’m a bit too sensitive, and maybe I am, but this visit started off wrong (and Stuart later told me that he didn’t have a good feeling about this doctor either).  I told the doctor I have profound hearing loss and could not hear him.  He raised his voice a little, but didn’t look at me when he was talking, it didn’t help when I did see his mouth as he had a lot of facial hair and I couldn’t see his lips well enough.  I had to rely on Stuart to tell me what was going on.  He asked if I’d been running a fever, I explained that my normal temperature is 97.4F, and it has been around 99F recently.  He said, that’s not a fever, everyone fluctuates. (Then why ask me??)  I told him about just finishing antibiotics and just couldn’t believe I had an infection so fast….he says that antibiotics don’t stop you from getting something else….but it was the way he said it, as if what I said was stupid.  I never said they did, I am just overwhelmed that I’ve been sick so much recently.  I asked him about a medication I have for irritable bladder that is expired and wanted to know if I should get a new prescription….he went into this long tirade about how medicines don’t explode after the expiration date, and how there have been studies that medication that hasn’t been opened is good for years after the expiration date. I was so confused at how he was talking to me….and yes I heard most of that.   I told him that I know different chemicals have different half-lives, and I didn’t know the half-life of this medication.  Well he just went on and on about how drugs are not food and they don’t just lose it because of the expiration date.

He did examine me, but I didn’t feel that he listened to me very much.  That’s ok, I talk too much when I’m nervous anyway.  He told me my urinalysis was negative, but that could be because I was drinking so much water it caused it to dilute the urine too much.  He said I had all the classic symptoms of a Urinary Tract and Bladder infection so he was going to treat me for it.  He gave me an antibiotic specifically used to treat this type of infection, and told me if I wasn’t better in 48 hours to call the doctor on call or I could wait until Monday and call him.  Yeah, that’s not going to happen if I can help it.  I’m feeling better.  Not well, but better.

On another note….I’m so very proud of myself today!!  I took a bath by myself!  I even washed my hair!  I haven’t taken a bath or washed my hair without Stuart’s help in a very, very long time.  I’m thinking over a year.  Don’t worry I wasn’t being irresponsible.  Stuart was in the house and on alert for my call.  He also just couldn’t stay away the whole time and came in to check on me.  But I did fine.  A little wobbly, but that often happens with temperature  changes (cool room, hot water).  Or it just happens any time….heck most of the time…so I’m getting pretty used to it and how to handle it.  Being extra cautious, have hand holds, non-slip surface under my feet…..

(at this point I got too hot while writing this and started to feel funny, so I had to put it down.   Today, Tuesday February 12th, is the first day I’ve felt like coming back to the computer.  I think I’ll end this post here  If I start where I left off I’ll be writing another VERY long post….so I’ll have to write more soon)

Miracle Cure – #HAWMC Day 20

On By WendyIn Chronic Illness1 Comment

Today’s Prompt:  Miracle Cure. Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer 😉

image is free clip art (forgive me I lost the site address I got it from)

My Miracle Cure would not be for a cure of a disease, it would be to ease the pain of so many….including myself, I’m not completely altruistic.   A world where chronic pain, and severe acute pain could be managed with ease.  No weird side-effects.  No matter what illness you have.  Fibromayalgia pain – no problem,  Pain from Cancer – gone, Chronic headaches – not any more, acute migraines – no worries!…… You can be helped.  This would be the miracle I would like to see happen.

This is a fake article.  Do not take this post seriously.

Breaking News: Pain Relief for All

FDA Approves Painfree –

First Non-Addictive Pain Medication – for the Management of Acute and Chronic Pain

HOPELANDS, England and JUSTINTIME, N.J., April 20, 2012 /PRNewswire/ — Panacea Pharma Ltd., and its subsidiary, Panacea Pharma U.S. Inc., today announced that the U.S. Food and Drug Administration (FDA) has approved Painfree (nomorsus) for the management of severe acute and chronic pain. Painfree marks the first FDA product approval for Panacea Pharma. Painfree is marketed as NoMorPain (nomorsus) in Europe, where it is presently available in five countries.

Severe Acute pain comes on quickly but lasts a relatively short time compared to chronic pain. Chronic pain persists over time and is often resistant to medical treatments.”Painfree is an important new option for patients with severe acute and chronic pain,” says Ivanna Ubetter, chief executive officer of Panacea Pharma. “Painfree, is designed to deliver medicine in a rapid, but controlled manner, and provides patients with an effective alternative to manage their pain.”

“As the first non-addictive pain management drug in the U.S., Painfree provides a new approach to managing the often debilitating and inadequately-treated episodes of acute and chronic pain that millions experience,” said Ibe Live, M.D., director at Paeon Research LLC., and clinical investigator for Painfree. “Current treatment options typically utilize short-acting oral opioid medications that cannot provide pain relief without many side effects, often leaving the patient with little quality of life. Painfree’s non-narcotic formulation is much better suited to help patients control their pain, and continue living the life they want.”

Ubetter said, “Panacea Pharma looks forward to working closely with health care professionals to ensure safe and consistent access to Painfree for the patients who are seeking relief from unbearable episodes of acute and chronic pain in.”



From the Heart ….#HAWMC Day 5

On By WendyIn Chronic Illness13 Comments

This is not from a prompt it’s from my heart.

This is on the ugly side.  Probably a post with too much information for some.  It’s very emotional, and I’m not exactly sure where it will all end…

"Turmoil" computer graphic
wendy holcombe - 2012

I’ve noticed a lot since I have been diagnosed with Intracranial Hypertension that my emotions are a bit out of whack, and I haven’t had the best filter on my mouth.  I cry a lot of the time, and try to be as strong as possible.  I feel alone and keep reaching out trying to ask for help, but just keep alienating people.

I continue to help others if they need to talk, if they need a shoulder…but my shoulders are just so soggy lately.  There are days I feel I have it all under control, my headaches are better, my vision is better, I’m getting around a bit better, so why am I a mess?  Why can’t I relate to people like I normally do?

I asked the doctor, is it the condition, the medication side effects, one medication mixing with other medication, do we need to adjust my bipolar medication???  I was told, “Yes. Maybe. It’s complicated.”  then I was told, “I’m sorry your condition is not easily fixed.”

Well that’s all well and good, but I’m losing everyone around me.  I feel like I’m going insane.  I’m so alone, and scared.  It’s getting to the point that the only one who will put up with me is my husband.  At least I think I do remember to tell him how much I love and appreciate him.

Then the terrors start.  I’m terrified of being alone, not all the time, just some of the time.  It’s more than that, I’m afraid of being without my husband. (again, not all the time, sometimes I feel very capable, then other times…Panic!!!)  What if something happens and he’s not here and I have vertigo and can’t stand up, and can’t stop throwing up, and ……  panic, panic….what if I’m upstairs and he’s gone and I can’t go downstairs and my blood sugar is too low and I need to eat, but can’t get down the stairs safely….panic, panic….what if….I Fall??…..what if…..OH remember to BREATHE!  There are just so many things he does for me, he has no idea how much easier he makes my life.  Often just by being here so I know if I need him, he’s here.

So, what do we do first…how do we sort this out?  Already 2 medication changes.  Soon another.  This week I see my Psychiatrist to see if there is anything we need to change there.  Is there any medication that is working against anything.  Should we add something to help ease some of this?  Will it help?

Does anyone really have any idea?

I do have bipolar I disorder, I know what it feels to not be myself.  I know I’m not going through a depressive or manic swing, but I know I’m not myself, and that tells me I need to back away.  Unfortunately, I wasn’t listening to that little voice when it first started screaming at me a few weeks ago.

Will I have any friends left at the end of this.  I admit I didn’t have many at the beginning.  Having a chronic illness for this long is not good for keeping good relationships.  No one’s fault really, it’s just very hard.  But I’d like to stop alienating the few people I do have supporting me.

Right now, I plan to finish this months writing challenge then take a Hiatus from my blog for a while and try to get this straightened out.  I don’t feel like I’m myself lately, and I don’t want to be putting words out there that aren’t really want I want to say.

I hope those of you who have been on the confusing end of my emotions recently can find a way to understand and forgive.  After the 1st of May, I plan to just take a break, I hope to see you soon.

A Rat in a Pink Inflatable Cage – and remember Next month will be different.

On By WendyIn Chronic Illness7 Comments
I had to try to do a quick drawing of this rat in the inflatable cage.
It's just a rough oil pastel. But it got me to drawing!
and hopefully, gives you a smile.
by wendy holcombe 2012 copywrite

The very first thought that came to my mind when I woke this morning after 4 hours and some odd minutes of sleep was,  “I feel like a Rat in a Pink Inflatable Cage.”

The next thought I had was, “Where did that come from?”  Then I realized, that is exactly how I feel.

I’m the clinical rat being tested on and pocked and prodded, trying to find the answers.  I’m living with that, I accepted it, authorized it.  I understand doctor’s don’t know everything, and not every person reacts to everything the same way.  But why the Pink Inflatable Cage?  That was a new sensation, well kind of, it does happen now and then.  I had the feeling I was just kind of in a big bouncy house.  Everywhere I moved things moved just a bit with me.  But the vision it was so perfect.  I had to share even if I can’t quite express it in the perfect words..

Now for why I had such a short amount of sleep.  I was put on a dose of steroids yesterday to help knock out my migraines.  I started them a bit too late in the day, so my last dose was a bit too late.  I’ve taken steroids before, but I’ve never had the symptoms so many warn you of.  The increased appetite, the restlessness, the bouncing off the walls!!!  Well I did find out I don’t quite jump off the walls quite as much if I eat with the dose, but I have to eat a good amount.  Whew!  But I learned this a bit too late.  I got to sleep around 6am, around 10am, I awoke to start the next days doses a bit earlier.  I really need to make sure I finish my last dose a while before sleep time.  So today I’ll be finished about 9pm.  Yay!  Hopefully, I’ll get a whole nights sleep.  Oh, I did happen to get a 2 hour nap.  So I had a little more sleep today.

*I wanted to remind everyone that I’m participating in The Health Activist Writer’s Month Challenge hosted by WEGO Health. Starting on April 1st.  So my posts may seem a bit different.  There will be some of my normal talk in there, but I’m going to follow some of their prompts to make it something different.  I’ve already written some of the posts, and I think you will find some of them enjoyable!  I’ve enjoyed some of them.  A couple I did enjoy, but I know won’t be the style of many of my readers.  I know you are thinking….”She’s already started?”  Yes!  I wanted to make sure if I had a day that I simply couldn’t post, there would be a post ready to go out.  I also wanted to make sure if there was a day I felt good and wanted to and have a happy day, I didn’t want to be concerned that I might not get a post in.  So yes, I’ve started.  No I don’t have the whole month finished!  But the first week is ready to go, and a few more are in the works.  Aren’t you proud of me???

Remember you too can join me, if you are brave enough…or crazy enough, I’m not sure which. All you have to do to join is sign up here: http://info.wegohealth.com/HAWMC2012 and you’ll be able to start posting once April rolls around.

I hope you enjoy the month, if you don’t please let me know and I won’t participate again.  If you want to hear more of my normal rants, let me know, remember these prompts are just suggestions, I can always post my normal way.  This blog has always been a way for me to express my feelings and to help others along the way.  I never want to stray from that purpose.  Please let me know what you think.  And keep in mind, this is just for a month, so let’s play if we can stand it, we might make some new friends, and we might learn a bit.

But I’m open- let me know what you think.

I’ll probably put up a poll at the end of the month to see what everyone thought.  : )