Quick update: Things remain similar

Outside of days of nasty side effects (pain and puking), things haven't changed much.  I still go to treatment 3 times a week, but I changed my days.  0.50 seems to be my theraputic dose. It equates to about 5 mins and 40-odd secs.

Lots of pain and other happenings

I haven't updated because not much new has been happening. My left leg continues to ache, but the pain relief regime is helping a lot. Unfortunately, my right leg now aches. So I am doing the same things for that leg.

My GP did an Xray to rule out a fracture, and as expected, nothing was found. GP is taking a month break. I have enough meds to see me through until then, but I admit I like knowing that he is around when I need him. I will see him again after I see both the dermatologist and oncologist, which happens in early November.

I am basically at theraputic level for my light treatments. The last one was 5 mins and 48 secs. 5-6 mins is thought to be my limit. I will know for sure after my dermatology appointment.

Other news is that we have 60 days to find a new place to live. The owners are selling our house, and we can't get a mortgage. I don't need the stress and pressure this involves, but there are positives too. As Girl Child says, "Just think of it as an adventure." It sounds like solid advice.

Being Compliant

I have the memory of a gnat. I keep all appointments in a diary. I carry a notebook in my purse. If I don't write it down, it doesn't exist or happen because I will never remember.

Being compliant means remembering to take meds and apply ointments. Not great when you don't remember stuff. So I now have alarms set for all my meds during the day. So far, so good. If this doesn't work, I will have to go to one of those pill sorter things. I ain't ready to go to that... yet.

My leg still hurts

I complain a lot. I know this, but I am really sick of my leg hurting.  It is aching badly. I can't take anything for another two hours or so. If I take it now, I will be awake at 3.30 or something because my leg hurts.
I took Girl Child shopping this morning. We were only gone for about am hour or so. Still my leg was aching at the end. With Brendan's blessing, I took two Mersyndols and I had a two hour nap. It wasn't the magic bullet this time. Yes, it helped a lot at first, but now I can't take anything else. I am not sure it is the wonder drug I had hoped.

Kids gave a performance on the trampoline. I had to stand five mins or so... not long. I just came inside. My leg hurts badly, which is why I am regretting taking the Mersyndols.
Meh. I need to grab my heating pad. That should help.

Pain Relief for My Aching Left Leg

I did get to my treatment on Friday.  I wasn't sure, but we loaded everyone up in the car.  Brendan drove me. Treatment lasted a whole total of 4 mins and 29 secs.  Boy Child wasn't impressed.  He wanted to go on the train, and I don't think the light booth was as cool as he hoped.


I also had an appointment with my GP in the afternoon. I am proud to say that I drove myself.  For some reason, Girl Child came with me because she asked if she could.  Pain Relief was the only topic of conversation.  I have a list of other questions I want answers to, but I gotta get this leg pain under control.  I can't live my life because of it.


He asked me how my week was with the pain.  I told him the truth.  He did another physical exam of my leg.  Nothing he could find out of the ordinary.  He wants me to get an X-ray; not that he thinks that he will find anything, but he will would not be a good doctor if he didn't definitely ruled out a fracture.  That happens on Monday or Tuesday, just a matter when I have time and/or help to get to the place.


Since the Panadeine wasn't really doing anything about my pain, he stopped that and instead put me on Panadol Osteo SR 665mg.  It is slow release so it should last longer and it is stronger than regular Panadol.  I still take  Ibuprofen 400mg as well.  I am also to keep up with the heat and the support bandage.  I have to call later in the week to discuss the X-ray and if I need to come in to see him.


I take all my 'scripts to the Chemist (or a Pharmacy). I remember that sometimes when Panadeine couldn't kill my migraines that sometimes Mersyndol would work.  So I picked up some of that too, and yes, I listened to all the advice and warnings about taking it with the Panadol Osteo.  Mersyndol has Panadol (parcetamol) 450mg, Codeine 9.75 mg and something called Doxylamine Succinate 5mg, which has a calmative/sedative effect.  


My leg was killing me when I got home.  I took a Ibuprofen and 2 Mersyndol. After a half hour, the pain was gone.  Completely gone.  It was amazing.  About an hour after I took it, I had a 4 hour nap.  I was so sleepy; I couldn't stay awake.  With this med, I have the choice of being awake or being pain free.  It will be used in emergencies.  I still have to tell my GP that I am taking it.  


I started on the Panadol Osteo and Ibuprofen combo today.  So far, it does help.  The pain is still there, but it isn't as bad.  The real test will come on Monday when the kids need to go to school and I will need to go to treatment. 

My List of Meds with Pics!

Some older person in my life used to say that the older you get, the more medicines you have to take.  I believe them.  I take a handful of pills every morning.  Then I take 3-5 pills at noon and at bedtime.  I did this list to help me keep track of everything, but I thought you might be interested too.   This list includes everything I take for all my diagnosises: depression, anxiety and the cancer (I can't think of a better word at the moment, sorry).

If the pics are all messed up, let me know.  I am trying to get then fixed ASAP.

Everyday Meds:

For Depression:

Prozac (Fluoxetine) 20 mg

1 capsule daily

For Anxiety:

Valium (Diazepam) 2mg

 1/2 to 1 as needed

For Nausea:

Maxolon (Metoclopramide) 10mg

1 tablet 3 times a day as needed

For the Red Spots:

Mometasone Furote 1mg/g (Elocon Ointment 0.1%)

Apply to affected areas 2 times a day

For Pain:

Brufen (Ibuprofen 400mg)  

1 tablet 3 times a day

For Pain:

Panadol Osteo SR 665mg  (I take the brand name so this is it)

2 tablets 3 times a day

Sometimes Meds:

Temazepam 10 mg

1 tablet as needed

Mersyndol 

The magic bullet of pain relief, but not approved by my GP... yet

In Pain and Scared

I am really tired and my anxiety is acting up. If I ramble or jump from subject to subject, I am sorry.

My leg woke me at about 4.30am. It is aching, and I couldn't to back to sleep.  As I wanderer into the living room to grab my phone to check Facebook, it hits me what I have to get done today.

Again with a disclaimer: I am not a busy mom, but my mental health issues affect me. Anyway... I need to get to treatment, and I have no idea how to accomplish that without some sort of help. Kids are well, and they will be at school today, and again no idea how to do that without help. I have an appointment with my GP before school lets out. My day could be over by 4pm, if Brendan feeds us dinner (and he almost always does).

My pain was worst yesterday after going to see my psychologist. I am glad I went because some things became clearer. She also told me that I was coping well. Yay! Even if I don't believe it 100% myself, it was so nice to hear. Since I went out and had worse pain, I am afraid it will happen again. Pain is not my friend, and I wish it was like Facebook, so I could unfriend and block it.

Another reason I am scared is because I was researching Mycosis Fungoides (also known as CTCL) yesterday afternoon. The advanced stages are scary. My therapy session dealt mainly with how I was coping and dealing with my diagnosis. I told her about this blog, and she thinks it is a great idea because sometimes I think out loud on here (eg this post). But it gives me a chance to also process everything that is going on. She kept telling me to journal; well now I am.

I told her of my ideas to do summaries of the conditions; for two reasons, to explain to family and friends and for me to understand exactly what I have and what will happen. She thinks the summaries are a good idea for my own understanding and maybe come to terms to what that will mean for me. Knowing more banishes fear for me.

She warned about the dreaded "What if..." Monster. Because I am looking at the progression of the disease, I might begin to stop living in the now. Right now, it is manageable and likely to go into remission. Tumors aren't part of my disease for now. Yes, they might come, but I just need to continue all treatments and take new symptoms as they come. I will not What If... myself.

So, the pain will hopefully get some better management from my GP. The fear has lessened after writing this out.

Pain, Pain and More Pain

I have been taking my GP's recommendations, but I am not sure how effective they have been.  The heating pad has been the best.  The ibuprofen has had some effect, but I have been taking Panadeine at the same time. The codeine has been making me loopy; not sure how much pain relief it is offering, but I don't seem to care.

The support bandage got annoying and itchy after a while.  I wore it for days, even when sleeping.  Yesterday, I gave my leg a rest from it.  Today my leg aches more, so I will have to endure it for a while longer.

Girl Child (and to a lesser extent Boy Child) has been sick, and I have been unable to drive anyway.  Both kids have stayed home for the past three days.  I have a psychologist appointment tomorrow, so kids will be at school tomorrow, provided they feel better.  I don't know how yet, but I will get it done.

Treatments are also something that I haven't been able to get to.  I can't drive, and Brendan has been going into the city for his lawyering activities.  I can take public transport, but I have not been sure how I was going to handle standing/sitting around waiting for trains and buses.  Some stops have benches, but not all.  I could be in a lot of pain by the end of it, and I have been too afraid to find out.  Friday is my deadline.  I have to get to my treatment by then.  If I am in lots of pain then, I will have all weekend to recover.

I have been thinking of doing short summaries of what PPD and MF (both of my conditions) are, treatment options, prognosis, maybe even pics and other assorted stuff that comes to me OR anything you would like to know.  If you are interested, please let me know by commenting or letting me know on FB.

Speaking of FB, there has been so many people sending their love, their well wishes and their prayers to me.  Thank you so much for all the love and support!!  I love each and every one of you.  Knowing you are there for me is helping me a lot.

Red Spot Biopsy

This is my second oldest red spot. The dark red line is from the 2 biopsies taken for my diagnosis.

Pain Relief

My leg has ached for days.  The only thing that I was doing that was any help was using a heating pad and taking Panadeine.  The heating pad was more help because the Panadeine was making me more sleepy than anything.  Sure, it is taking the edge off, but I am currently loopy from taking Panadeine earlier.  It is like operating in a fog.

I saw my GP on Friday morning.  Brendan came with me.  He had strict instructions to make sure I stayed on topic of my leg hurting.  I was in a Panadeine fog for the appointment too.  So I gave my wonderful and patient GP a rambling, somewhat confusing account of my leg hurting.  Then I told him I wanted some pain relief, and asked, "So, you got any questions?"

He did have questions.  Did I remember injuring it? No.  What kind of pain was it?  That one is a bit more difficult to answer.  It aches constantly like a toothache, and the joints ache like arthritis pain.  He asked some other things, but I forget what they were.  There was questions about it being connected to the MF.  He also commented that I probably knew more about my condition than he did.  That is somewhat true.  I have been doing a lot of research.

He did a physical examination of my legs, and he was impressed with my flexibility.  I was proud of that; all those Dana-modified yoga stretches are still doing their job.  He seemed to accept that an injury had not occurred.

Then we began talking about MF and how this was probably a symptom of it.  That is what I suspected from the beginning.  We discusses compression stockings.  (They are really expensive.  Around $120 seems to be the going price.)  He didn't seem to think the expense was worth it at this point, and he suggested I get something he called "Tubigrip".  He also gave me a prescription for Ibuprofen 400mg to take 3 times a day.  I also got a sleeping pill prescription because the pain is messing with my nighttime sleeping.  He also told me to keep doing what I was doing: heating pad, resting my leg and Panadeine for breakthrough pain.  He wants me to talk to my dermatologist to make sure the pain isn't a side effect of the narrow band UVB treatments.

Off to the pharmacy and I put in my scripts. When I asked about the Tubigrip, the assistant had no idea what it was either.  After a brief description (that I stole from the doctor), she showed me a similar product. I am modeling the beauty of the thing in the previous post.

So far, the regime seems to be working.  I am in less pain that I have been in days.  I hope the pain is only a short term annoyance, and it will go away soon.

My lovely bodigrip

Part of the pain relief regime is a tubular support bandage. It covers my whole left leg, and it is ugly. Luckily, pants cover it up.

Aches and Nausea

Two of my side effects from my condition is nausea and aches.  In simple terms, I feel like I going to throw up most of the time, and sometimes I do throw up for no other reason than it happens.  My legs and joints ache a lot.  This happened the last time I had this condition so it was expected, but it is no fun when it happens.

For the nausea, I have a prescription for Maxolon (generic name Metoclopramide).  That is helping for the most part.  It is actually manageable.

For the aches, that is not so manageable.  My left leg is constantly aching, and my left hip aches occasionally.  I am taking Panadol and Panadeine (for Americans, think Tylenol and Tylenol 3) for the pain.  Neither one helps that much.  With the Panadeine, it helps me sleep and takes the edge off.  When I am asleep, the pain doesn't bother me, so it is some help.  Panadol isn't doing anything.  Nothing.  

I called my GP to get an appointment to see what he can offer me.  I can't get a guaranteed appointment until Monday, but I am hoping to get in to see him on Friday. (I call at 8.30 and hope I can get an emergency appointment for that day.)  Warmth seems to help.  I am going to be getting a heating pad to see if that makes any difference.  At the moment, I wear warm pants and constantly have a blanket on my knee.  

I saw on some MF website that compression stockings can help.  I will talk to my GP about that tomorrow.

So my activities are quite curtailed because standing for any length of time hurts my leg.  I am hoping a solution is found soon.  

Tantrums and Resolutions

On Monday, I awoke in complete combat mode.  Everything and everyone was wrong and against me.  For those who don't know, I have a diagnosis of severe depression and severe anxiety, due to childhood emotional abuse from my Vietnam Vet, PTSD suffering father, and I am currently disabled due to it.  Some mornings I wake up with almost no control over my emotions, but I can usually talk myself out of them.  On Monday, I couldn't.

I needed to get both kids to school.  Brendan wanted to go into the city to do lawyering stuff, which is vital to his career at this point; he needs to get all the practical experience he can.  I had to go to treatment.  That evening, the kids were performing in their school production.  For me, this is an anxiety-inducing day.  I didn't manage my anxiety well, so throwing a huge tantrum seemed like a great idea at the time.

After much bad behaviour on my part, I decided that I wasn't doing treatments anymore.  I deal with a lot on being there for Brendan and the kids.  I am not a busy mom by any stretch of the definition, but my illnesses make some normal, everyday activities extremely hard for me to deal with.  Now I have a new, scarier diagnosis to deal with on top of that.

The only thing I seemed to have any control over was my treatments.  Since I could control that, it was gone.  I even went so far as to do a search to see what would happen if I didn't do any treatments anymore.  Not good news -- if you treat my condition early, you can almost force a remission.  The later in the condition you treat it, the worse the prognosis.  Yeah, prognosis... it can lead to death.  I am still in the very early stages.  Treatment can and will make a real difference to my quality of life.  Now the question is: how do you eat crow with any sort of dignity?

The answer is you can't.  I didn't go to treatment on Monday because I was being petulant.  I picked the kids up from school and I had a long talk in the car with them.  I apologised to both of them and explained some things that I finally realised.  Thankfully, my kids are forgiving and loving because they both forgave me.  I even ended up at the school production and had a great time.

So what was behind all this.  Fear and nothing more.  I am freaking scared.  The more I read, the more scared I get.  I did a lot of research on Sunday night before bed.  I woke up after having processed all that new information.  My reaction was to freak the eff out and make sure everyone around me know that I wasn't happy with anything.

Advanced stages of this condition are scary and gross.  Tumours can erupt from the skin, and they can ulcerate.  Once you get MF, you have a 50% chance of it progressing to the later stages and all the scary stuff happens.  However, I have a 50% chance that it will not progress.  It will never be more than what it is now.  I like those odds.  I will take those odds, and I am betting that it won't progress.  On waking on Monday, I couldn't and didn't see the positive side, and I was terrified.

I went to my treatment on Wednesday, and I will go again on Friday.  I will go again next week too.  There are things worse than having a tantrum because you are scared.  Treatments can help keep those things at bay.

Fading spot

This is the oldest patch (or red spot) I have. I got it about 9-12 months ago. It has been responding well to treatment.

GP answers some questions

Based on reports and a letter from the dermatologist and oncologist, my GP said that I have cancer. Well, what he said is that I am being treated as if I have cancer, but it is really hard to tell when it is actually cancer and not still just PPD.

He also told me not to use the word "cancer" because of the emotional impact of the word. There is some truth there because I had to be told, "Yes, you have cancer" and being very disappointed and scared knowing that. In my head, I call it "MF" because that amuses me. GP suggested calling it a "skin lymphoma," but as Husband pointed out, "lymphoma" means cancer and most people know that. Call it whatever you want. It probably ain't gonna kill me, but it is still cancer. From what I have read, I have a 90% chance that it will only stay in my skin and not spread to my organs. So long as that happens, I will live to an old age to die of something else. Yay!

I am a firm believer in banishing with laughter. Banish evil; banish fear; banish sadness. All can be banished with a good laugh. The husband and I were talking about how I wanted to go to bed at 7pm. To me, it was pathetic and wanted Husband's validation that it was. He gently mocked me and I said, "But I have cancer." We both began to laugh. I proved I was being pathetic and cancer is a punchline. It can be laughed away. I am convinced of it.

Treatments

My treatment at the moment is application of a steroid ointment twice a day and narrowband UVB light treatments three times a week. I am still working up to the therapeutic dose. There is still some discussion as to what the final dose will be. It seems that around 5-6 minutes will probably be it. I am currently at 4 mins and 7 secs. It goes up a little bit each time. So I could be at therapeutic dose by the end of next week. I see my GP today. Hopefully some of my questions will be answered and I will have a better understanding of what is going on with me.

Recent Diagnosis

I am a 38 year old woman who was finally given a diagnosis. I have been waiting about 23 years to know what exactly was happening to me. I am not sure that I am happy with the answer.

The diagnosis is Pigmented Purpuria Dermatosis with Mycosis Fungoides overlap.

I am not sure what it all means yet, but so far I am scared. I have started treatment, which consists of narrowband UVB light treatment and twice daily application of a topical steroid. This is a pretty standard treatment, it seems.

I am being seen by a dermatologist and an oncologist. Hopefully, some of the questions I have will soon be answered by the doctors or my own research.