I'm still here, with issues

Msmoxie said:

I would still try the CBD oil for the pain and more

I am sorry that you are suffering so.  That doctor is cruel to disallow you the cannabis if that helps you with pain and appetite.  CBD oil is used (and does not get you high) by many people suffering various maladies.  It may help you too... worth looking into.  My niece takes the CBD oil for PTSD.... it may help with your anxiety and get you away from the pharmaceuticals that tend to have worse side effects.   I don't know where you are headed to in Florida but if it is anywhere near Gainesville, FL ... look up John French, LMT.  He has helped me sooooo much with his orthobionomy technique (most people have never even heard of this and I have not been able to find anyone in NJ that is practiced in Orthobionomy).  John French, LMT is a true healer ... and I am not just saying that.  Our chiropracter refused to work on my 82 year old mother once her bone density test results made him nervous about adjusting her at all.  John French has techniques that are supremely gentle and a healing touch.  Also, old fashioned Valium is the pain reliever of choice for me.  I have seizures on Tramadol and the other newer pain relievers have unacceptable side effects (including possibility of manic episodes.... like we need that on top of the suffering!!)... Because I have problems and bad reactions to many typical and common meds... my doctors are understanding and prescribe what works best for me.  Thank God for that because the suffering is unecessary.  

I believe that finding the right doctor will help you immensely.  I have ditched the doctors that don't understand and won't understand where I am coming from.  I have my primary care physician and a radiation oncologist (he knows that I will not accept chemo or radiation but willingly helps me with any request I have... I am thankful for kind and sympathetic doctors).

Maybe once you get to Florida you will have more open-minded physicians that truly want to help you... not themselves.

Sending you positive energy and strength : )

Moxie

Hi Moxie,

I looked up Orthobionomy, not sure it would help my pain issues which I've had for the past 18 years.  But thank you.  I think I will try to find a doc that uses CBD oil in treatment.  It's worth a try.  I'd love to get away from the pharmaceuticals.  I just don't know if I can at this point.  I take the pain meds as directed and they work for the most part unless I over do.  The packing to move has me hurting more, and the anxiety of finding a place to live has me in a tizzy.  We won't be near Gainsville....we are looking at Spring Hill, Zepherhills, Dade City area.  About an hour outside of Tampa, so that's probably where I'll end up going for medical treatment.  I just have to wait and see at this point.

Nice to be back!  I've been avoiding this site...denial isn't just a river in Egypt, right?  But lately I've felt the need to come back to see what 's going on with folks and to complain about my ailments..can't do that at home, nobody really wants to hear it.

I'm so glad you had a pain free exam!  I hope my next one at the end of April is just as painless.  My PCP ordered some vaginal estrogen...it's the tiniest little pill on the end of a tiny applicator`seriously, smaller around than a birthday candle, and I couldn't get it in without using coconut oil and it still hurt, that's one of the reasons I asked my doc to refer me for pelvic floor rehab.  It was great while I was going and I learned a lot.  I couldn't believe how many muscles are "down there."  But I have exercises to do, and they've helped tremendously with the incontinence.  I'm really glad I went, but it got to be too expensive to continue that treatment.  I went to Soul Source for the dilators.  I bought the small set.  No cheap date, that's for sure, but worth it in the long run if I can be intimate with my husband again someday.  I'm not rushing into that.  

I changed pain docs after the fiasco I had with my previous one trying to get my meds on time...their office staff really sucked.  BUT, this new doc does check for THC, so that's no longer an option for me.

At my appointment a few days ago I asked him about the Marinol, and he wrote a script for it, and told me my urine test would show THC, but since I haven't used it since the beginnning of August, he's confident I won't be using it again...lol.  The problem is getting it filled.  My insurance company won't cover it unless the doc tells them that it's medically necessary.  So my docs office faxed them notice that it IS medically necessary due to my weight issues that are directly caused by my cancer treatment, so keeping paws crossed that it gets approved.  I won't know for a few days.  It's REALLY expensive.  The name brand runs around $800 a month and if my ins. approves the generic, it will be $81.  Still a lot of money, but since I barely eat that much in groceries in a month, it's probably worth it.

I'm so tired all the time.  When does the fatigue go away?  I'm just always wanting to nap and any kind of exertion just does me in.  My husband just woke up and told me I need to use the Boost again.  UGH.  That stuff.  I can STILL taste it!  But I have it so, in order to feel better, I'll start drinking it again, since I'm obviously not getting enough calories in my diet.

Hugs to you.

mp327 said:

Wis

Thanks for the additional update.  I tried the vaginal estrogen for some time, but didn't notice much change with it.  I finally decided it wasn't worth the risk of causing additional cancers, so I discontinued it.  I hope you can get approval for the Marinol and that you can get some relief from your pain.  Fatigue--ugh!  I hear you!  I will go a couple of days and have the energy of a 20-year old, then the next day, I feel like a slug.  I do not like Boost either--tasting it always takes me back to when I was in treatment.  I have occasionally used a drink called Premier Protein, which I believe is available at Costco.  It tastes much better, IMO.  It's very high in protein, which I'm supposed to cut back on, due to my diagnosis of chronic kidney disease.  I miss my protein--I'm a bit of a junkie when it comes to protein, as I lift weights. 

Good luck with the packing and your move.  I hope being in Florida will lead you to the right doctor who can help you sort out all of your issues.  Please keep us posted when you can!

FINALLY got the Marinol.  It took a week to get it approved.  Finally, in tears, I told the 6th or 7th person at my insurance co. that my primary care doc told me that the malnutrition was going to kill me if I didn't get a handle on it.  He put me on hold (again) and came back and told me I was approved for one year.  So Yay!  Now that I've tried it for a couple of days, all I feel is high...no appetite increase yet.  I'm hoping it kicks in.  I'm not crazy about the high feeling...I didn't like it in the 70's and I didn't like it last summer either when I tried it then...the real stuff not the pharmaceutical.  I'll stick with it though on the chance that it will work.

I'm doing my best...muddling along with the packing.  My husband is going to take a truckload down to FL and put it in storage...all our unnecessary things.  We'll keep the stuff we really need for the next month and a half and then move the rest out when it's time.  Trying to find a house down there, working with a realtor.  Prices are going up in FL too, so keeping my fingers crossed that we find something soon.  I don't want to have to move in with my son and his family with our two dogs and two cats.  That would be a total fiasco.  A lot of the problem is that the closing on this house is 5/21...the kid we are selling to is a Marine...we live near two bases. And he's in training and unavailble to close until then.  Nobody wants to sell us a house with the closing so far away.  We need the $$ from this house in order to buy another.  What a mess.

Oh well, life is always exciting for us...we've never had a smooth road, why expect one now, right?

Hugs to you

Jane s said:

How are you?

Hi Wis

I haven't been on here in a while, went on vacation, spent a week in Hawaii with my 11 year old.  I was nervous about my energy level because we arrived at what felt like 10 pm and I had to pick up the rental car and drive for an hour.  But, I rested as much as I could on the plane and it was fine.  Then I just scheduled all our activities for later in the day, while still going to bed early.    My son is used to my need to stay in bed until late morning.   When we got back I hosted a memorial for my dad and step mother, which was really nice but I've been exhausted ever since.

Anyway, I've been thinking about you and meaning to check in.  Let us know how the move went.  And drink some calories!  The weight will come back if you stick to it, I'm sure, it may take a while, though.

Hugs

Jane

Hi Jane!  So nice to spend time in HI.  I lived there for a year when I was 18....such a long time ago.  Everything was expensive then, so I imagine it's only become worse since '79.

We drove down to FL last week and I'm still recovering.  I was in the car with my two Golden Retrievers, and my husband drove the 26' truck with the rest of our belongings and towed my Mini. It was a hell of a drive.  12 hours, and I still don't think I've recovered completely from it.  I had two bladder accidents because I couldn't get into the rest area bathroom in time.  It seems like once it starts, I just have no control.  Luckily there was a woman there who let me use her phone to call my husband (who was staying with the dogs)to bring me clean clothes.  I was mortified.  The second time, wasn't as bad, but still required a change of clothes, which I managed to do in the car.  Very embarrassing.

I'm surrounded by boxes still.  Most everything is put away, but downsizing has me wondering where to put things.  There is far less storage in this house, but it has a pool, so once it gets to the right temp, I'll be in there getting some exercise.  I still have a storage unit full of things from the first truckload down here.  All my crafting things are there, but my husband wants to make me a "She-Shed" so I can have a place of my own to work.  We already have the shed, it's just a matter of putting up drywall and painting it, and putting up my shelves and work area.  I'd really like to get back to making jewelry.  I miss being creative and productive.  All in good time, I guess.  I also want to get my bookshelves...3 big ones and all my books out of storage.  We'll need to rent a truck in order to do that.  The storage place is only 6 miles away.  What a difference it is here.  Coming back to civilization is like a culture shock.  No more target shooting in the back yard, but it's only a few minutes to get to the stores and that's really nice.  It used to be around 40 minutes just to get groceries.

I've left the house twice since we've been here.  Once to take my dogs to the vet. (Sadie had an allergic reaction to something here and got icky eyes). And yesterday, I went to the new pain management place to fill out paperwork, with proof of residency so I could get an appointment.  I'll see the new doc in a week. My pain doc in NC made note on EVERY office visit about my marijuana usage...calling it " recreational."  That pissed me off royally.  I did NOT take it recreationally, I took it to gain weight a couple of times.  I just hope that I'm not totally red-flagged, and that I can explain to the new doc the reason I used it, and that he will understand.

I'm going to do my best to get off these opioids.  I've been on them for years.  I don't think they actually even work anymore, I've been in a lot of pain from my neck and the sciatica still flares if I'm on my feet for very long.

Well, I've taken up enough of your time...I'm glad you had such a nice vacation. I still haven't gained weight, and my doc back in NC told me to take the Marinol at bedtime so I don't get the "high" feeling.  Please keep in touch!

Hugs to you,

Fondly, ~Wis 

mp327 said:

Wis

So good to get an update from you and I'm glad you are now moved, although you're still trying to get settled apparently.  It takes time.  I hope things calm down and you can get back to a normal routine in your life.  Finding new doctors is always a challenge, but I hope you'll find good ones who will help you with your pain issues.  I've moved quite a few times and one of the worst parts of moving is starting all over with medical care.  Take care and I hope you get to enjoy that pool real soon!

My first visit with my new pain doc went really well.  He is VERY pro cannabis, and is going to refer me to get a card.  He actually handed me a pamphlet about it and told me to google it.  He also sent me for a blood test and they took 7 big tubes and three small ones, so he tested me for just about everything.  Then he referred me to an oncologist and I just saw her yesterday.  She was amazing.  She asked me if I was tired...and my response was, "ALLTHE TIME!"  She said, no wonder, your cortisol level is very low.  They were able to get the bloodwork results before my next visit with the pain doc, and she ordered a prescription of hydrocortisone tabs, referred me to an endocrinologist and a GI doc, ordered a PET scan, mammogram...I'm a year past due for that.  She also had them draw blood there for a cancer test.  I can't remember what it was called right now....three letters.  No one has ever done that test on me before.  All of this is going to be done within the next two weeks before I see her again.  Both of these doctors were extremely thorough, and really put my mind at ease.  I feel really fortunate that I have these docs.